My O Baby

Monkey See...Monkey Do

2008-12-07T07:58:00.000-08:00

Potty Training for Dummies

2008-10-23T16:42:00.000-07:00

This has been a great week. Jack - and toddlers in general - always amazes me. As a first-time mom, I had no idea what to do with regard to potty training. Many encouraged me to just wait till he was ready. Others said that the later I waited, the harder it was going to be. I noticed that Jack just did not care when he peed in his diaper. He didn't have any desire to sit on the potty. I assumed that he'd be 5 before he even made an attempt.

But I read a weekly parenting column in the paper, and the woman who wrote in said that one day she told her 2 yr old (who had no interest like Jack) that the diapers were all gone. She stuck him in undies. When he made a mess, she'd calmly change him and say "you feel wet, don't you?" but didn't make a big deal about it. In 3 days, he was accident-free. I decided, heck, let's just try it.

Last week, when I bought the underwear, he cried. All of Walmart heard him say "No, I want diapers! Pee pee in diapers!" I thought for sure this wouldn't work. Today is Day 4. He went from (day 1) never stepping foot inside the bathroom to (today) peeing and pooping in the potty. And having the ability to hold it in. It was a little embarrassing having him run around the car dealership today holding himself. He wanted so badly to not wet his pants, but he's not too fond of public bathrooms. Who can blame him? :)

Thank you

2008-10-21T07:30:00.000-07:00

I just wanted to say thank you to all who sent cards, emailed me, and called on Friday. Your remembrance of Bernadette on her special day meant the world to us.

Annual Trip to Pumpkin Patch

2008-10-13T13:12:00.000-07:00

An oopsie

2008-10-07T19:13:00.000-07:00

So, several months ago I posted a recipe for Cincinnati Chili, a favorite meal of ours. You'll notice the word chili, which usually means it contains chili powder. Yeah, well, I failed to type out that the recipe calls for 1 tablespoon of chili powder. Oops. So, if it tasted a little...blah, boring...it's not because we have horrible taste in food, but because I apparently stink at proofreading.

John Mark said I can blame it on pregnancy brain, but I don't even think I was pregnant at the time, so there goes that excuse. Hmm...

On another note, I can't believe it's October. A year ago last weekend, we made our trip to Baltimore. Two weeks later, our daughter passed away. The picture of Jack on my main blog page is from our annual visit to the pumpkin patch that we made a week before we headed north. (Yes, I know, I absolutely stink at updating photos.) We are heading there again this weekend, and I wonder how I'm going to handle it. I don't even know how to describe what it's like to be living in the season in which she died. It's just...strange. It seems impossible that a year has passed. Almost as if I'm in the movie Groundhog's Day, and I am pregnant with Bernadette all over again. I brought out some fall decorations from the garage and discovered the little candy bowl - in the shape of fall leaves - that was left at our house when we arrived home after her death. It held caramels left by our neighbors. I didn't cry when I picked it up...I just felt that ache that I sometimes feel when I find myself reliving those weeks last October. I see a pot of mums on someone's porch, and I am brought back to that day we arrived and saw mums on our own porch left by yet another neighbor (yeah, we live on a great street with amazing neighbors).

Fall is my favorite season here in the south. But I had anticipated a sort of dread with its (slow) arrival because of all the bad memories associated with it. But there's a nostalgia, in a way. The week following Bernadette's passing, we came home. This is where I healed, grew up, and learned how to live again. I have to admit though, that I look forward to getting through her 1 year anniversary, something that has been looming on the horizon for what seems like forever.

First drawing!

2008-10-03T17:25:00.001-07:00

Jack drew his first drawing! Yup, you guessed it - Thomas the Tank Engine, 3 wheels and all. I was just floored when I walked into the living room and saw a train drawn on the paper. I rushed over and grabbed the half dozen sheets he had drawn them on and hid them in my "Jack file" for fear of him tearing them up and sprinkling them all over the cat. OK, I admit, I also stuck one on the fridge to show it off.

I'm not quite sure why this milestone is so exciting to me. I shouldn't be surprised that he knows how to draw them since he has begged me to draw about 5000 of them in the past 8 months. Everytime I have a pen in my hand, he screams "draw Thomas! Draw Diesel! Draw Toby!" I'm sure the check out lady at Publix thinks my artistic shopping list is just darling. :)

Someday...

2008-09-28T19:55:00.001-07:00

I'll get used to a child vomiting all over me repeatedly. You can tell the difference between a new mom (me) and a veteran like my sister-in-law, Caroline. Jack and I were visiting her family this past weekend, and we almost went the whole trip without getting sick (I get sick easily when I travel). But alas, the last night, Jack woke up at midnight and threw up his dinner all over our bed. Then subsequently threw up whatever was left for the next few hours. His instinct was to put his face in my shirt and let me have it. Then rest his head against me...right in the mess. Having this happen at my own house is one thing. Having it happen when I'm sharing someone else's guest-room bed with my son is another. Oh yeah, and not having hubby with me to take care of the messy work. Thank God I was able to drive the 6 hrs home the next morning without showing any symptoms. I had the plastic bag ready just in case, but it seems like I was spared.

I hate seeing my kid suffer. I guess in a few years, things like stomach viruses and strept throat won't phase me. For now, I want to cry when I see how uncomfortable he is. Makes me realize just how difficult it would have been to watch Bernadette go through the dozens of surgeries she would have experienced if she had lived. I pray for all parents who have to watch their children suffer, especially those in the hospital and those with chronic illnesses. May God grant you peace and strength.

It's been awhile

2008-09-13T05:12:00.000-07:00

After my computer got struck by lightening last month, I kind of got out of the blogging habit. I just wanted to give an update on us, even though I doubt anyone is actually reading this anymore! :)

By the grace of God, John Mark and I have been blessed with Baby Bean #3 who is due on February 24. We just learned that it is a baby girl. Wow, I am the mother of 2 daughters - neither of which I've actually met, but it's still crazy. Jack is of course excited. With Bernadette, he was too little to get the whole baby-in-belly concept. He was more amazed at the morphing of my belly button. I'm trying to teach him that he has 2 sisters - one in heaven and one in my tummy - but I'm sure it's a hard thing to grasp for a 2 yr old.

She looks wonderfully healthy so far. I've had an u/s during each visit, and so far so good. All her organs are inside her body, and I even got to see her bladder, which was more of a relief to me than I thought possible. Yeah, there are just some things I will never take for granted again.

So, there are a lot of mixed and complicated emotions that are going along with this pregnancy. I had a particularly hard time during the first trimester, b/c another 9 months seemed like an eternity after the nightmare of the previous year. But I guess it's just grace that's allowing me to enjoy it. I don't sit around and worry about the what-ifs as much as I thought I would.

I'll keep y'all updated. There's still a long road ahead and a lot can happen in the next 5 months, but I'm just praying that I'll survive whatever is around the corner.

God Bless,
Michele

9 month anniversary

2008-07-18T06:14:00.001-07:00

Yesterday marked 9 months since our baby's heart beat its last. 9 months ago today, I delivered her. It's just unbelievable how time just keeps moving forward without me.

It's been awhile...

2008-06-21T17:42:00.000-07:00

So, it's been awhile since I've posted in my blog. We're doing well here. Jack and I are staying busy, although I make an extra effort to stay close to home b/c of gas prices. I have thought about how great it would be to live on a large piece of land in the country, and then I realize that there are great benefits to living in town. Everything is within a few miles of our home. Now, if only they would improve the sidewalks on some of the main roads, and we can ditch the car all together. :)

I recently read this list (below, in purple) of what to do/say and not do/say when someone has lost a child. I think it's hard for people to read me, b/c I often appear "just fine", when really, I'm a mess inside. Other times, I really am doing okay. I don't blame others for not understanding, but I can honestly say that one of the most difficult aspects of losing Bernadette is the feeling of isolation. Of people unintentionally saying the wrong things, of people not realizing what hurts. Of people not talking about this terrible experience b/c they don't want to make me upset. Or maybe they have forgotten. Again, I don't have the expectations that I once had. I've realized that I would be equally clueless if I had never experienced something like this. I do appreciate all of you who have asked me how I am doing. And I mean how I am really doing. I got off the phone with my friend Mandy a few weeks ago, and I just felt this huge weight being lifted off of my shoulders. I was so grateful for her honesty and willingness to talk about my loss. For being the one instigating the questions, not waiting for me to bring it up (b/c oftentimes, I'm afraid that the other person isn't interested if she doesn't ask about it). And for reminding me that she is always available to listen if I needed an open ear. Even though it's been 8 months, I still feel very haunted by Bernadette's death, although it isn't as constant as it once was. And I can't say enough how comforting it is to be able to talk about it. If it seems that I talk too much about it or if the subject is getting just plain old, I apologize. My loss is something that hardly ever leaves my mind, so it is a very natural process for it to overflow into my conversations. I am sorry if it feels uncomfortable or gets old. Hopefully, someday I'll be able to just keep my thoughts to myself. :)

I talk to several moms online whom I've become close to, and I've noticed that it is not uncommon for those who have suffered infant losses to have a VERY hard time around other babies. At first, I thought I was nuts, and I tried to force myself to be ok around other infants. But then I realized that it is very normal to have this reaction. I can't express enough how my heart crumbles into pieces when I see or hear about other babies who are close to Bernadette's age. It's not about jealousy or envy. It's about having the reminder of my loss being shoved into my face. The reminder of what is missing in my life. And I suspect this doesn't change even after having subsequent children. Undoubtedly, time will heal, but even after 8 months, it is still very painful. My baby should be making faces at her big brother, receiving hugs and love from him. She should be learning to crawl (ok, maybe not yet, since she will have spent much of her infancy in a hospital crib). She should be drooling and squeeling. Not buried 6 feet underground.

Anyway, here is the article. Maybe it can help those who have friends in similar situations as myself:

Written by Elspeth Ludemann. First published in "North and South" (New Zealand)
in March 1991).

My child has died - what can you do to help?

Please don't ask "how are you?" unless you really want to know the answer...
"How are you?" has become a meaningless greeting to which the expected answer is
"fine". But I am not fine. At best I'm a bit fragile and a lot of the time I'm
far worse - I feel upset, hurt, bewildered, angry, guilty. But these and other
normal feelings which follow the death of someone you love are not the things of
polite conversation. So if you are not prepared to hear about them, choose
another way to greet me.

Don't expect too much of me too soon....
If I'd broken my leg I'd have a plaster cast on and you wouldn't expect me to
get back to normal for months. You can't put broken feelings in plaster and you
can't see the scars. But they need time to heal and I need time to come to terms
with the realisation that "normal" from now on is life without my child.

Don't ignore the death or the child that died...
You wouldn't have any trouble talking about good news. If I'd just won Lotto it
would be the first thing you would mention. Bad news is different - you probably
don't know what to say or how to say it. But the death of my child is the most
important thing in my life and it helps to acknowledge that.

Be honest, and try to avoid platitudes...
"This is awful, I don't know what to say" is far more help than cliched phrases
that aren't true anyway. Time alone doesn't heal, the fact we've got each other
is irrelevant because two drowning people can't save each other and there is no
comfort in the thought of this misery being God's will.

Don't think that having, or being able to have, other children will lessen the
pain of my child's death...
A child who loses a favorite toy will not be placated by a substitute. And so it
is with people. I loved my child for who he was as an individual, not as an
interchangeable piece in a set and mourning for him, at least at first, will
strain rather than strengthen bonds with other children.

If you want to help, make specific offers not empty promises...
Saying "if there's anything I can do" might make you feel good, but I'm unlikely
to take you up because I probably don't know what I need and I'm unsure what
your "anything" means. However if you turn up with food, an offer to baby-sit,
or just a listening ear, your kindness will be gratefully accepted.

Practice, don't preach...
However weak or strong my faith, and whatever your beliefs, this is no time for
sermons.

Be sensitive...
I find it hard to believe life in the outside world is still going on when my
private world has collapsed. I hope my child's death won't leave me bitter. But
it will take me time before the weight of my own feelings lightens enough to
allow me to share your joys or sorrows.

Don't expect me to follow a prescribed pattern of grieving...
Denial, anger, guilt, depression and acceptance are all stages in the grief
process but no two people will go through them in the same way. I'll have good
days and bad days, sometimes I'll cope with a lot, at other times I'll be phased
by little things. It may seem illogical to you, but then feelings often are.

Don't confuse control with coping...
A stiff upper lip probably means I've got a tight rein on my feelings, not that
I have come to terms with them. You may not be comfortable with crying or
screaming but they are far healthier than numbness, which is a sign of denial.

Keep in touch...
I'll always be grateful for the practical and moral support you gave immediately
after the death and I know you have to get on with your life. But grief doesn't
end with the funeral and occasional phone call, note or visit will let me know
you haven't forgotten.

The death of my child has left me emotionally and spiritually shattered. It will
take time to put the pieces together again, to rebuild relationships. But when
things get really bad, knowing there is a friend who cares may be all I need to
tip the balance in favour of recovery.

~~~~~~~~~~~~~~~~~~

By the way, here is a video John Mark took on Jack's birthday. We had a low-key weekend, but Jack seemed to enjoy himself regardless...

I also have a bunch of beach photos and will post them soon.

Happy Birthday, my boy

2008-06-01T09:08:00.000-07:00

Jack turns 2 yrs old today!

Hon, you bring more joy into my life than I ever thought possible. Here's to the wonderful 2's!

I need a vacation...

2008-05-30T05:34:00.000-07:00

Nevermind, I just had one! Our family went to Gulf Shores with our close friends this past week, and we had a ball. John Mark's parents came on Memorial Day to hang out with us, and it was - as always - a joy to see them with Jack. I can't tell you how much Jack loved the beach. As soon as he saw the water, he ran to stick his feet in it. I thought for sure the first time he tumbled in a wave (which isn't hard to do when you're 3 feet tall, even when you're standing at the very edge of the water), he'd never want to go near it again, but it didn't deter him in the least.

Lessons I learned about vacationing with a child:

~The 30 minute rule was made for a reason. If your child eats a half pound of strawberries for breakfast, then immediately jumps in the pool, chances are those strawberries will come right back out. Luckily, he was on the "boat" (a big raft), and I saw the expression on his face before the strawberries made an appearance, so Daddy was able to push the raft to the edge of the pool before the red goo spread throughout the water.

~Sunscreen actually works!

~Feeding your kid junk food on vacation is great until they expect it all the time at home. Jack now looks at his sippy cup and is like "whaa? Where's my shiny silver bag filled with bright blue koolaid and skinny yellow straw to suck it down?" And "Cheerios in a cup aren't a snack, Mom. Snacks come in cute individual bags and are filled with lots of sugar and salt." OK, it wasn't that bad. Like I said, he ate a lot of strawberries.

Anyway, the trip was great. It was sad for me in some ways...although it was very therapeutic to be in the sun and to be away from our home for a bit, I could definitely sense the absense of Bernadette. I often imagined what it would've been like to have her there with us. In my arms while we lay under the umbrella. Her feet in the sand, while her brother builds sandcastles beside her. It's hard to believe she'd be nearing toddlerhood at this point. This was the first vacation we've had since her death, and I imagine that every vacation will be a little bittersweet for me.

Anyway, hope you enjoy the video John Mark made. I apologize for the poor video quality on youtube.

Rejoice in our suffering...

2008-05-14T18:06:00.000-07:00

As most of you know, John Paul the Great passed away 2 hours before John Mark and I received the Sacrament of Marriage on April 2, 2005. I was getting my dress on in my mother-in-law's office across the street from the Cathedral. I was alone. The bells tolled, and I knew. I knew he had passed. I remember just dropping to my knees and praying a prayer of thanksgiving that he no longer suffered. Praying for our Church who would undoubtedly feel the gaping hole which had been his great and wonderful papacy. During our marriage ceremony, while my brother Joe began the Prayers of the Faithful with a prayer that our Papa rest in peace, I cried because I knew how much we would all miss him.

I was searching for this song, Homesick, by Mercy Me, on youtube because it has spoken powerfully to me these past 7 months. Seeing this video of JPII hit home because I can see now just how united we all are in Christ. I can see now how Bernadette was welcomed into heaven by all the angels and saints, including our beloved pope. I can't tell you how much comfort I find in that.

One thing that a lot of my friends may not know is that my mother and father lost their first child hours after his birth. They were always very open about it, but being the youngest of six and having a very relaxed childhood, it was just a part of our family's history. I felt no connection towards Emerick, my older brother. I was very sad for my parents, but until Bernadette died, I never really got what it must have been like for them. My mother never even got to see her son. How blessed we were to be able to hold our daughter and say goodbye.

Emerick was also at the gates of heaven to greet his niece. To carry her home. Thank God for that. Thank God for eternity.

Falling Slowly

2008-05-07T17:27:00.000-07:00

From the movie, Once.

Shattered Hopes

2008-05-05T10:32:00.000-07:00

This video pretty much sums up our experience. It was very difficult to listen to this couple share their story - many tears were shed because the emotions I experienced during my 20 wk ultrasound and during the subsequent months were precisely what they were describing in this interview. The anger towards God, the fear to hope for miraculous healing, the feelings of complete loss of control. Shattered hopes.

I remember calling John Mark from my car with the news that our baby was sick. Not believing the words coming out of my mouth. It was such a slap in the face when the news just kept getting worse. I yelled at God - why are you letting this happen? What have I done wrong? I have been faithful to you, why aren't you faithful to me? And when she died, I just couldn't understand why he would take her from us when we had done everything we could to save her.

But there's always that quiet voice in my head that reminds me that this life is not ours. That we are called to serve him through every circumstance, every trial, every triumph. Why shouldn't I carry this cross? Since when was I told that suffering wouldn't have a place in my life? We should embrace it and get excited that we are able to participate in Christ's suffering. There is nothing but good that has come from her short life on earth.

Grieving is a very slow process. I am learning to trust again, but at the same time, I am still learning to accept that I have no idea what the future holds for me and my family. I still think about our daughter constantly and wonder what she'd be doing at this very moment if she were here with us. But I've stopped pinching myself, wondering when I'll wake up from this nightmare. I've stopped yelling at God, asking "why me?" A lot of wisdom has been gained...I no longer fool myself into thinking that I know what tomorrow will bring. Which is a marvelous thing really, because that leaves a lot more time for me to enjoy today.

1, 2, 3...

2008-05-04T05:10:00.000-07:00

Toddlers just amaze me. I was always a little intimidated with the prospect of teaching a child how to read and count (and I want to homeschool? Hmm...), but it's actually a lot easier than I had imagined. A month or two ago, I drew a "W" and Jack pointed to it and said "double do, double do!" A couple of days later, I drew "W" again with chalk on the sidewalk. He said "Mmmmmm!" I then realized that he was sitting opposite me and was reading the letter upside down. I was just amazed!

Today, he woke me up (way too early, I might add). When Bernadette died, for some reason, he started using a pacifier at night. So, now he just loves his paci. This morning, he had one in his mouth, and he walked over to "the spot" in one of our kitchen cabinets (i.e. the place where we stash them when he's awake) and he said "One paci...want two pacis." He even put the "s" at the end of paci. I handed him a second paci. He said "Two pacis...want 3 pacis!" I was just blown away that he knew what "One, two, three" meant. I mean, how do kids know that numbers are for counting and not just words that go together in sequence? Crazy.

Jack's best bud, Ben, who is 26 months has this thing where he will count to 12 (usually skipping 6 or 7) and then scream "Blast Off!" and run as fast as he can to the opposite end of the yard with his arms shot out in front of him. I'm not sure if it's just a coincidence that children in this town (home to NASA) learn how to count by pretending to be rockets. But regardless, it's to die for. These kids are irresistible.

Earth Day & Vocations

2008-04-22T13:12:00.000-07:00

This is what Jack thinks of Earth Day: not much. During Story Time at the library today, the librarian gave each toddler a dixie cup to fill with dirt and a junior sunflower seed. Know what Jack did with his cup? Poured it all over the floor. Yup, the only kid in the room of 20 to do it. That's my boy.

But, I still think he may be destined for the priesthood. He now blesses me when I sneeze. :-)

I wish it could just stop

2008-04-18T17:51:00.000-07:00

Yet another friend, Natalie, (from the Catholic forum I belong to) has lost her baby. She delivered him on April 17, exactly 6 months after I lost Bernadette, exactly 3 months after my friend Danielle lost her son, William. My birthday is on the 17th of August, but I'm beginning to seriously resent that day of the month.

So, please pray for her son, Benjamin, and for the consolation of his family on earth. Oh how she must be aching for him right now. It was only after I had lost Bernadette that I knew what a shattered heart truly felt like. It's such a nightmare.

My family has been through a lot this past year. Just to give you an idea, there were 5 of us cousins (including my sister and I) who were pregnant at the same time in 2007. One suffered a miscarriage, two of us had stillbirths about 6 months apart, one of them had an emergency C-section and almost lost her life (and her son had his cord wrapped around his neck several times but thankfully survived), and the other delivered twins, one of which has a disabled arm. The two cousins who had lost their babies are pregnant again, and I want to ask you to please pray for the safety of their precious children and for peace of mind of the parents. We aren't pregnant yet (we pray that someday God will give us that gift again), but I can only imagine how terrifying it is to go through the entire 9 months after having experienced such a tragedy. In some ways, I feel like my womb is not the safe place it should be. So much is out of our control as mothers, and those who have lost feel incredibly vulnerable and scared. I have strong faith that God will bless these moms with screaming babies at the end, but I'm sure that doesn't change the anxiety they must feel.

God Bless you both! I pray for you constantly!

6 months

2008-04-17T05:31:00.000-07:00

Today marks 6 months since Bernadette's passing. It's been the longest 6 months of my life, yet the most eye-opening and grace-filled ones, too.

I don't regret a minute of it.

Prenatal Partners for Life

2008-04-14T07:45:00.000-07:00

PPFL requested that I write our story for their website. The link is here.

Welcoming Pope Benedict

2008-04-13T18:42:00.000-07:00

In honor of our Holy Father visiting this week...

Jack and he have a special relationship (neither of them know it, however), because Jack's middle name is Benedict. Here is when he was a wee little lad:

I am in awe...

2008-04-09T10:32:00.000-07:00

I received the Bladder Exstrophy (ABC) newsletter in the mail today. It is usually too painful for me to read, but I took a random glance at the donations page. In memory of Bernadette, there was $525 donated! I was tempted to list the names of those who donated (they were printed in the newsletter), but I don't want to in case you wish to remain anonymous. But thank you all for your generous gifts. This money can do so much. Many families need to travel long distances to get the proper care for this complicated condition, and all donations help with their expenses. I remember the financial stresses being lifted off of my shoulders when I realized that ABC could help us pay for the flights to and from Baltimore if we couldn't afford them in the future. Obviously, that's not necessary for us now that Bernadette is gone, but knowing that other families will be helped in her name brings great joy to my heart. So thank you all! And God Bless,

Michele, John Mark, Jack, and ^Bernadette^

Paula Deen rocks

2008-04-08T18:20:00.000-07:00

If you can find a Boston Butt Roast on sale, I highly recommend buying it and making this recipe. It makes a lot, and you can freeze the leftovers and/or make BBQ pork sandwiches for the next day's lunch. John Mark and I both agree that this roast tastes a lot like BBQ ribs. Mmmm...Fatt Matt's! :-)

Paula's Smoked Boston Butt Roast
1 (5lb) pork butt
2T seasoning salt
4T house seasoning (see recipe below) (I usually just use 2T)
4T liquid smoke (I use about 3T)
1 medium onion, sliced
1 cup water
3 bay leaves
2 cups BBQ sauce

house seasoning:
1 cup salt
1/4 cup pepper
1/4 cup garlic powder

(obviously, you can cut this recipe in half or in fourths. :)

1) Preheat oven to 350 degrees.
2) Sprinkle one side of roast with 2 tablespoons of house seasoning, rubbing well.
3) Flip roast over and rub remaining 2 tablespoons.
4) Repeat process with seasoned salt and liquid smoke.
5) Place roast in large roasting pan (not on rack).
6) Place onion and bay leaves on top of the roast. Pour water over top.
7) Put in oven and cook ~2.5-3 hours or until 170 degrees.
8) Allow meat to cool, then slice and serve.
9) Serve with BBQ sauce on the side.

Note: I'm not sure if it matters, but I roasted this with the fat layer on top. I figured the fat would melt a little and would seep into the meat, thus making it more tender. Probably not the healthiest option, but...well, it's definitely yummy! :)

I served this with baked sweet potatoes and steamed veggies (to make up for the fatty meat). The next night, I reheated the pork leftovers and served it with baked fries and homemade coleslaw:

Coleslaw
1 bag coleslaw mix
3/4 cup mayo (I use light)
1/4 cup red wine vinegar
1 tsp yellow mustard (opt'l...we add it)
2T sugar
Salt and pepper, to taste

1. Mix mayo, vinegar, mustard, sugar, salt, and pepper with a whisk.
2. Mix with the coleslaw mix until well coated.
3. Chill and serve.

Baked Fries (adapted from Hillbilly Housewife's recipe)
A few potatoes (we generally do 1 potato each person, preferably russet)
Veggy oil (we use canola)
Seasoned salt
Ziploc Bag

1. Slice up potatoes to preferred thickness. We keep the skins on them.
2. Place in ziploc bag and toss in about a tablespoon of oil. Shake it around to coat the potatoes.
3. Spread potatoes onto a cookie sheet or pizza stone.
4. Bake at 450 degrees for about 15-20 minutes, depending on thickness.
5. Sprinkle seasoned salt on them. Serve with ketchup. :)

First uttered prayer

2008-04-02T19:26:00.000-07:00

Jack has been saying "Jesus" for awhile now, but today he's made great strides in his faith, LOL. John Mark was holding him in our living room near a picture of Mary with Child, and Jack pointed to her saying "Mommy! Mommy!" Wow, kids are just amazing. (And no, Mary bears no resemblance to me. I just make it a habit of pointing to Mary's statue at church and saying "that's our momma." I guess he really has been listening. :)

Anyway, 30 minutes later, we were saying grace before dinner, and he yelled "Amen!" We started laughing and making a big fuss, so he repeated it a few more times with a big grin on his face before he lost interest and starting chowing on his rice.

My boy is destined to become a priest. I just know it.

:-)

By the way, happy 3rd year anniversary John Mark! It's been a wild ride. We also say a special prayer of remembrance for John Paul II who passed away only a few hours before our wedding...Rest in Peace, Papa!

Chicken Fajitas

2008-03-31T16:04:00.000-07:00

I just made some yummy chicken fajitas, using a recipe I adapted from this one:
Here is my version:

1-1.5 lb boneless, skinless chicken breasts or thighs, sliced into strips
1 red bell pepper, sliced
1/2 large onion, sliced
1 garlic clove, minced (~1/2 tsp)
1 Tbsp veg oil
1 Tbsp lime juice
1/2 tsp of each of the following:
chili powder
cumin
salt
black pepper
~1/4-1/2 tsp red pepper flakes
8 flour tortillas

The toppings we used:
salsa
shredded cheddar cheese
lettuce
tomatoes
sour cream

1. Saute bell pepper, chicken, onion, garlic in oil.
2. Add lime juice and spices. Simmer for a few minutes.
3. Warm tortillas by placing a few on a plate in between 2 damp paper towels. Microwave for ~45 seconds to 1 minute.
4. Toss a scoop into a warm tortilla, then add your favorite toppings.

Choo-choo

2008-03-25T20:48:00.000-07:00

The weekend before Easter, we went on a train ride at the railroad museum. I have issues with celebrating Easter during Lent, but we put up with the Peter Cottontail theme and had a great time. Jack was terrified of the bunny. I mean, scared.out.of.his.mind. If you check out his frightful Santa encounter you'll get the idea of what it was like to be hugged by a giant mint green furry creature with massive eyeballs. And to answer your question, yes, he was the only kid on the entire train who cried. (We just tell ourselves that he's smart.)

Here are some pics:

And the photo below is what I was referring to in my previous post.

Happy Easter

2008-03-23T10:02:00.001-07:00

I'm mainly writing this to let y'all know that The Gaudet Family - our friends from Mobile - will be on Extreme Makeover this evening on ABC. I'm still wondering if Ty got a concussion from being tackled by the boys...on the news clips, it looked downright painful.

Holy Week has been spiritually exhausting for me. I think sometimes it's easy to just push grief and suffering aside, if only to catch my breath and to give my heavy heart a break, but I made an extra effort to meditate on my sorrow and experience Christ's Passion as I've never experienced it before. I used to go to Confession at the beginning of Lent...it's not one of my favorite activities, so I usually want to get it over with. But I waited until Holy Thursday this year. I had gone in December, but the sadness was still so raw back then, that I was sort of numb through the whole thing. There was a long line this time, and Jack was with John Mark at work, so I was able to focus all my energy on what these past few months have done in regards to my faith. It was painful, mainly because my current weaknesses and sin are all new to me - they are reminders of the person I had become the moment Bernadette's heart stopped beating. In many aspects, the new me is stronger in her faith - I have witnessed God's grace in so many ways that I simply could not deny him at this point. But at the same time, the temptations of envy, fear, pride, and hard-heartedness can throw swings at me so fast that I hardly have time to prepare for impact. As C.S. Lewis states in The Screwtape Letters, Satan will try to grab hold of you in the most subtle ways. The example I remember most is that of the faithful Christian who attends a Sunday service and becomes increasingly annoyed at the off-key singer behind him. The devil knows our weaknesses and will do anything to break us. And when a tragedy hits close to home, he'll do anything to use it to his advantage.

When something bad happens, I picture it like a railroad track that's about to split into 2 routes (can you tell I'm around train talk a lot?). There is a point in the track where there are 4 steel rails instead of 2, and they slowly split off into 2 separate tracks. Grief can sorta be that way. There is a bit of time where you can sometimes feel like there are 2 paths in one - you feel angry and alone. You push God away, insisting that he is not welcome anymore. But at the same time, you hold onto him and pray fervently that he will get you through this mess. Eventually, you must choose whether you will allow the anger to boil over and envelope your life. Or whether you will embrace his love, accept his grace, and trust that he has a perfect plan for you. I hope and pray that I can experience each day to the fullest in the spirit of our daughter's memory. She represents what life is really all about - sharing eternity with our Father in heaven.

Happy Easter.

In the Kitchen

2008-03-19T17:05:00.000-07:00

Today was a rainy day, and after playing in the puddles for a bit, I decided to make a couple of batches of this rice craft. It is so incredibly easy, and although it can make a mess (albeit a very easy one to clean up), Jack has such a great time that I like to do it for him while I'm doing the dishes or cooking dinner. He loves to push his matchbox cars around in it, spoon it into cups, and pour it into other containers (or all over the floor).

I absolutely love to cook. I am (very) far from a gourmet chef and I'm not very creative when it comes to designing my own recipes. But I love to try new things. The best online source I have found thus far is www.recipezaar.com. I have been using it for several years now, and some of my tried-and-true recipes are on there. I'm going to try to post some of my favorites on a regular basis. I don't know the rules in terms of copyright, so I will just post a link whenever possible.

Last night, I made Paula Dean's Asian Orzo Pasta Chicken Salad for the first time. I thought it was a clever way to get some vegetables into my family's mouth. Jack didn't care for it, but John Mark and I ate it up. It would be great for a potluck or a picnic. I thought it was a tad bland, so I added more soy sauce and a dash of salt. Chilling it overnight made it more flavorful, too. I have a hard time finding a big chunk of time to devote to dinner, so I always see what I can do the night before after Jack is asleep. I chopped up the veggies, thawed a whole chicken, and cooked the orzo pasta. The next day, I steamed the chicken using the method found at my other favorite website, Hillbilly Housewife. Pulled the chicken off, mixed all the ingredients together, and tossed the bowl in the fridge for later. So much less stressful!

Today, I made Cincinnati Chili, one of our favorites. I also cooked this for my whole family while we were at our family reunion in Pennsylvania. It's a great comfort food! And it's very easy to double or triple, which I did this time around to give to a family we know who just had a baby and another friend of ours who just underwent surgery. The recipe is below. I guess it would serve about 4 people, but I almost always double it (and in this case did x4), and whatever I have left we eat for lunch or I freeze. It freezes very well!

Cincinnati Chili

1 lb ground beef
1 onion, chopped
1 clove garlic, minced (~1/2 tsp)
1 T chili powder (edited to add this - I can't believe I forgot it!)

1 tsp all spice
1 tsp cinnamon
1 tsp cumin
1/2 tsp cayenne (I use 1/4 tsp to reduce the heat)
1/2 tsp salt
1.5 Tbsp cocoa (the powder stuff)
1 (15oz) can tomato sauce
1 Tbsp Worcestershire sauce
1 Tbsp apple cider vinegar
1/2 C water
16 oz box of spaghetti noodles, cooked and drained
1-2 C cheddar cheese

1. Saute onion, beef, garlic, and chili powder until beef is slightly cooked. (I usually fully cook the beef and it's still great.)

2. Add remaining ingredients besides the spaghetti noodles and cheese.

3. Reduce heat and simmer uncovered for 1.5 hrs.

4. Serve over noodles and sprinkle with cheddar cheese.

Yum! I like to serve this with a simple salad on the side.

Jeremiah 29:11

2008-03-10T19:05:00.000-07:00

For I know well the plans I have in mind for you, says the LORD, plans for your welfare, not for woe! Plans to give you a future full of hope.
When you call me, when you go to pray to me, I will listen to you.
When you look for me, you will find me. Yes, when you seek me with all your heart,
you will find me with you, says the LORD ...

Someone posted this passage on a forum I am on, and although I have heard it a million times, it hit me more than ever this time. I need to tattoo this verse onto my hand, place it on my dashboard in the car, and write it in big fat letters on my refrigerator door to drill it into my head that I am taken care of. That God has a plan for me. Sometimes I feel like I am really making strides in my healing, but then something random will trigger a setback (or is it really a setback at all? Maybe it's just part of the process.). I have been really struggling with letting go of my desires for that perfect family. OK, my definition of a perfect family probably doesn't equal many people's. But for me, it means children. Lots of children that make lots of noise. Chaotic love. Sometimes I feel like I am failing Jack because I know how much he enjoys other kids. I imagine that great bond between siblings and worry that it will be a while before he ever gets to have that (if at all).

But then I scold myself because I know just how foolish I am. I have two beautiful children, even though only one is walking this earth with us. I have a wonderful husband who works hard so that I can stay at home. We have a roof over our head, food in our fridge, and a brand new swing set to boot, lol. (thanks Mom and Dad!) Yes, we have a cross to bear - losing a child isn't something that one ever really gets over. But many people aren't able to have children at all, and some families don't have enough money to put food on the table. Wow, do I have it good!

So, I offer up my grief and frustrations for those who struggle with infertility, for those who have lost children, those who are without employment or have trouble making ends meet, and those who are struggling to understand God's plans for them. Live for today and relax about tomorrow. He hears our cries and knows what's best for us.

Have no anxiety about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. Philippians 4:6

Owwsi

2008-02-26T18:33:00.000-08:00

(Translation Jack-ish to English: "outside")

Jack's favorite things:
1. Choo choos (i.e. trains) and trucks, but especially trains. Sometimes I feel like this is all he cares about.
2. Books, particularly about choo choos
3. Thomas videos (I've only seen 1 at the library, and we pretty much have that one memorized. Thank God for youtube)
4. Food (he could live on strawberries if I let him)
5. Owwsi

We don't have a ton for the outside, so I'd like some feedback if you could. Should we build him a swing set? Mind you, I am cheap, so big purchases like this take a lot of thought. I usually talk myself (or hubby) out of anything over $20. Make that $5, unless it includes food or gas.

We have some push toys, a tricycle, a tree swing (thanks Mom and Dad!) that is about to break the poor tree limb because (ehhem, see #4) he's at least 30 lbs at this point. We definitely need to move it before our tree lands on our house. We also have a simple sandbox/trucks/shovels, which he loves. Add in some sidewalk chalk, a few balls, and a wagon, and that's about it for the outside. For someone who could practically live outside if we let him, I feel like there is something missing. But I'm finding that I have a fear (like my mom had when we were kids) that he'll never use it. So, for those who have one, do you recommend it? If not, what are your favorite outdoor activities for a toddler/preschooler?

I've also pondered the ever-daunting trampoline. I say daunting, b/c I am scared to death of those things. My parents probably vividly remember when I came home from a friend's house with an ankle so messed up (3 major tendons torn, including the achilles) that I vowed to never step on a trampoline again. But this is yet another activity that Jack loves and is a great way to get exercise.

On another note, I want to direct you to my friend, Mandy's blog. She posted some cute pictures of our kids playing. Jack had such a blast at their house! Usually it takes him 10 minutes to warm up, but he quickly left my arms and wreaked havoc on the poor girl's playroom. :)

The Real Inconvenient Truth

2008-02-23T19:19:00.000-08:00

The pro-life movement has been discussed and debated so much, that I think it has in some ways been desensitized. I, for one, almost forget what I'm really saying when I say I'm pro-life. Sure, I think abortion is wrong...blah blah blah. But watching this clip of Bill Clinton speak so strongly against the right to life brought me to tears, not understanding how this has gotten so out of control. Pro-abortionists are probably so used to seeing bumper stickers with "adoption, not abortion" or "xxxx million babies murdered each year" that they don't even think about what that means anymore. I sometimes hate myself for not praying about this often enough, for not standing up and saying "this is evil!" to those who don't agree.

This is a sensitive subject for some, a simple, non-emotional political argument for others. I have many pro-life friends, some of whom have had abortions in the past. I see the heartache it causes. I see the open wound that it leaves behind. Abortion doesn't just hurt the child, but it forever scars the mother. Why can't people see how devastating this is for our families, our communities, our whole world? Why can't people accept the consequences of their actions, no matter how inconvenient those consequences are? Why do we insist that it is wrong to watch a person abuse their children, neglect them, drown them in lakes, but say it's a woman's right to kill her unborn baby? I know what it's like to have a child who isn't "perfect" or who doesn't fit into my perfect little life. I know what it's like to be scared *out of one's mind* about the prospect of having a child who has special needs. I know friends who spend their nights in hospital rooms while their children are on ventilators, fighting for their lives. But, my God, they are no less human than we are! This is a holocaust that I fear has no end in sight, and I shake at the thought of what it really means. I feel responsible for not taking a stronger stance, for being fearful of offending others who don't think like me. Back in high school, our youth group would pray the Rosary in front of an abortion clinic in Pittsburgh - one of the largest in the country. I remember fervently praying for the women walking inside, for the clinic escorts who scorned and mocked us. The evil I had witnessed in the escorts' faces is indescribable. But now that I'm in my cozy little neighborhood, in my cozy little town, I too easily forget that this happens every single day, to millions of mothers and their children. I just hope and pray that my story can touch those who are faced with similar situations. And that God will use me in any way he can to reach out to scared and helpless women who don't know which way to turn.

On another note, I read on a forum this scripture passage that someone posted. I think it speaks well to those who have lost loved ones:

Hope in the Lord. My soul is deprived of peace, I have forgotten what happiness is; I tell myself my future is lost, all that I hoped for from the Lord. The thought of my homeless poverty is wormwood and gall; Remembering it over and over leaves my soul downcast within me. But I will call this to mind, as my reason to have hope: The favors of the LORD are not exhausted, his mercies are not spent; They are renewed each morning, so great is his faithfulness. My portion is the LORD, says my soul; therefore will I hope in him. Good is the LORD to one who waits for him, to the soul that seeks him; It is good to hope in silence for the saving help of the LORD.
Lamentations 3:17-26

I can say at this point that I now remember what happiness is, thank God. I have restored hope. In fact, I feel more fulfilled because I know exactly what it's like to hit the bottom and to live in despair. Living in the moment is all I can do, and I'm really starting to get that. I love my family so much...sometimes I wonder how my heart is going to remain intact when I feel it swell with love for my son and husband. (Jack's laugh especially does a number on it!). And honestly, I give Bernadette all the credit. I miss her desperately, but I know it is because of her death that I have gained such appreciation for the life I have.

May she continue to intercede for us and for all those who have walked with us in this journey!

Our Lady of Lourdes

2008-02-11T20:28:00.000-08:00

So, today marks the 150th anniversary of Lourdes, where Mary appeared to St. Bernadette and identified herself as the Immaculate Conception. During my pregnancy with Bernadette, I drank water that John Mark brought back from Lourdes 9 years ago (we have a large bottle of it - it still tastes sweet and fresh!). As I drank it, I begged God to heal our sweet baby. Well, he did eventually heal her in the most perfect way possible - by allowing her spirit to rest eternally in heaven.

I have thought a lot about St. Bernadette and the immense suffering she went through during her brief life. Yet Mary came to her - a humble and poor woman - and through Bernadette's faithfulness and obedience, countless miracles, conversions, and healings have occurred. At Mass today, I came to realize just how simple life was. We are here for one purpose...to get to heaven and bring as many people with us as we can. We are called to love and serve God and his people. The End. All these bumps in the road are scary and treacherous, but if we keep our hearts and minds focused on Christ, we will get there (by the grace of God). St. Bernadette was poor, uneducated, and very ill. She died in her 20's. Yet God used her to move mountains, and in the end, that was all that mattered. So, I can sit here and complain that life isn't fair. That nothing is turning out the way I had wanted it to. Or I can allow God to lead me to where he wants me to go. I can stop worrying about what tomorrow will bring and just accept where I am today. He knows what he's doing.

St. Bernadette and little St. Bernadette, pray for us! Happy Feast Day!

Christmas '07 - Eating, of course

Being Thankful

2008-02-05T08:26:00.000-08:00

I have met some wonderful people through Bernadette's short life, some of whom I've already mentioned. Another friend of mine, who actually lives near me, is someone I met through a clubfoot forum. Her son has a serious muscle disorder, and I'd like to ask you to pray for him. He's in the hospital with RSV, which is scary for anyone, let alone a child who has trouble breathing to begin with. He's currently on a ventilator in the PICU. Her blog is here. She is such a self-less, down-to-earth mother who has given me so much support this past year. She is undoubtedly an inspiration to many moms who have special-needs children!

Jack and I are still in Mobile. John Mark drove his dad's car back home, but we stayed behind to get the car fixed and to have Jack play with his cousins. He absolutely loves it here. I am sick with a weird stomach bug, so I'm trying to hibernate and keep my germies to myself. We have been keeping up with the Gaudet's house. We went by last night (their neighbor behind them allows folks to stand in their driveway and watch) and were amazed that in a matter of 2 days, they already had the foundation, frame, and part of the roof already put up! At the demolition on Sunday, it was pretty funny to see people (particularly women) go nuts at having a celebrity in their midst. They kept screaming "Ty!!!" like little school girls.

Speaking of Extreme Makeover, we watched Sunday's episode about the girl who was diagnosed with brain cancer, which eventually spread to her bone marrow. Only months after their new house was built, she passed away on Dec 28, 2007. Her story really touched me because I know all too well that death and suffering are real. It's not just something that is reserved for somebody else. When they would ask her about the chemo treatment she received, she just said how sorry she was that other kids had to suffer like she does. That when you spend your days sick in a hospital bed, you don't get to live your life. They showed some kids in the hospital playroom who were there for treatment. These kids are forced to grow up way too quickly. A sweet boy, JJ, whose family belongs to our parish passed away last January from cancer. His mom is in a moms group I'm in, and she has been an inspiration to many. Joy just radiates from her, and it's so apparent that she is living her life to the fullest, knowing how easily it can be taken away.

So, my prayers go out to all children who suffer. For their parents who feel helpless and afraid. May God grant you peace!

Mardi Gras

2008-02-02T07:44:00.000-08:00

This weekend, we drove to Mobile for Mardi Gras. Lots of unexpected excitement!

1. Fifteen miles from Caroline's house, as we are driving on I-65, we hit a deer! I was driving in the right lane, and I saw the adorable thing coming from the left side. The car in front of us just missed it, but there was no way I could avoid it. :( If I had swerved, who knows what would've happened to the traffic behind me. So, I ran right into it. Our Guardian angels were clearly protecting us, though, because it could have been MUCH worse. It hit our hood, then ran right into the right side of the windshield. I muttered (well, muttered may not be the best word) "Deer...deer...DEER!" and as John Mark looked up, he saw her head come right at him. If it wasn't for the column between the windshield and passenger door, she could've easily killed John Mark. I stopped on the side of the road, and all of a sudden, Jack just started screaming. I have a feeling he will never be much of a hunter after this experience. When I got out, I asked "Where is the deer? Did he run off?" But of course, she was lying dead near the trees 100 feet behind us. :( So, that was a great start to our trip. BUT,

2. Friends of the Webers (The Gaudet Family) won Extreme Makeover Home Edition yesterday! We knew they were in the Top 5, but we didn't get our hopes up since it seemed so unbelievable. Caroline and her family used to live 2 doors down from them, and I wish they still did so we could witness the excitement. They have the neighborhood blocked off, and the cops won't allow anyone to drive through. They are allowing the public to witness the demolition tomorrow and the unveiling next weekend, though. Anyway, we are so excited for them. They are now in Arizona at a resort and are going to the Super Bowl! They have 8 kids all together. Their family is involved in the charismatic community that John Mark's family belonged to, and they have been friends for many years. We are all praising God for the wonderful gift of a new home and a better life for their family. http://www.al.com/news/mobileregister/index.ssf?/base/news/1201947350288250.xml&coll=3&thispage=2

So, I will post some pics of our car soon and keep you updated on the Gaudet's!

Prayers needed!!

2008-01-28T14:01:00.000-08:00

My friend, Jennifer and her family need many prayers! Mikey, her son, who was born with cloacal exstrophy and received a kidney transplant last year, is really sick. He's been in and out of the hospital this winter, and no one quite knows what is wrong. His birth story is here. She also has a website that she updates regularly.

Jennifer has given me so much support these past 9 months, directing me to the right surgeons, giving me advice, and preparing me for Bernadette's arrival. She even sent us a bunch of winter clothes for Jack while we were in Baltimore (the sweatshirt Jack is wearing in the pics below is one of them :). Her incredible strength and selflessness inspire me. I feel a special closeness to Mikey, even though we have never met. When I put one of his shirts on Jack, I ask Bernadette to intercede for him, and I silently cheer him on.

Please pray for the physicians caring for him, as well. That they may receive the wisdom to understand Mikey's condition and help relieve his pain and suffering.

Hail Mary, full of grace, the Lord is with you. Blessed are you among women, and blessed is the fruit of your womb, Jesus. Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen.

Get better soon, Mikey!

Jack

2008-01-28T07:07:00.001-08:00

Our neighbors took these photos of Jack yesterday. Enjoy. :)

New Life

2008-01-26T19:29:00.000-08:00

Today, John Mark, Jack, and I went to a wedding of our friends, Nic and Petra. They are such great, God-filled people, and I know God will do great things through them. I can't remember if it was during the homily or what, but Fr. Phil mentioned how through this sacrament, new life is created. Obviously, that could be taken literally, in terms of having kids and such, but I think in a way, you are transformed - become new - when you marry your spouse. Suddenly, you have the responsibility not only of your own salvation, but of your husband or wife's. You must lift him up in prayer, hold him accountable, witness to him, and honor him.

After losing a child, the vows said at a wedding have a greater meaning to me. Three years ago, when John Mark and I stood in front of the altar and committed ourselves to one another, we never dreamed that life would throw us this curve ball. I remember when my sister-in-law (sitting in for John Mark) and I were consulting with the Chief of Pediatric Neurosurgery at UAB. He said "Now let me tell you something. The majority of couples who have a special needs child end up filing for a divorce because you end up neglecting your relationship. Your baby is not the only important person in your life. You have other family members to care for, including your husband and your son." At the time, I was sort of shocked that he would bring up something so personal, but I eventually realized how easy it was to disregard everyone around you when you suffer a tragedy. I thank God for John Mark's steadfastness, wisdom, and devotion to me and Jack. I think he is one of the main reasons I am still standing and have not lost hope.

So, today, I pray for all married couples - those who are recently married, that they may receive the grace when faced with difficult decisions and heavy crosses in the future. For those struggling with infertility, child loss, divorce, illness, and the caring for special needs children. May the grace that pours forth from the Sacrament of Marriage give them the strength and courage to lift each other up and bring each other closer to Christ.

By the way, here are some pics...the one below (excuse the bad cropping job) was taken on our first - and probably only - snowfall of the year. I swear there are snowflakes there, you just can't see them. ;)

He has a thing for cups that are bigger than his head:
And this one, I'll entitle "Boogers":

Jack the Toolman:
The picture below was taken of our Dogwood after 10 hours of being hosed with water overnight in 15 degree weather. Our outside pipe was freezing, so John Mark let the water trickle through a sprinkler in order to create this masterpiece. We don't get too many naturally-formed icicles in these parts, so we work hard on creating our own. These pictures probably won't interest anyone other than our family living in the deep south where it hardly reaches below 50. My family in Pennsylvania will probably just roll their eyes and move on. :-)

And here are 2 pics from Christmas in Mobile, courtesy of Jen-Jen:

And I apologize for the fuzziness of this next picture (my camera is breaking), but I had to squeeze this one in...after a very hard day of working in the kitchen, Grandma settled down for the night with some Guitar Hero III. How cool is that? I have a hunch it wasn't all that relaxing, though.

Glory Baby

2008-01-25T05:46:00.000-08:00

As Danielle lays her baby down to sleep today, we pray for peace and consolation. The funeral is at 1pm, Mountain Time. I listen to this song almost every day to find strength (thanks Petra!), and I hope parents who have lost children find hope in the words.

I have been thinking a lot about Bernadette's funeral today, and I have vivid memories of laying her casket into the ground. Of not wanting to let her go. May everyone who is burying loved ones today find the strength to get through the day.

We miss you, sweet Bernadette.

Rick and Bubba

2008-01-21T06:32:00.000-08:00

Many prayers go out to the Burgess family for their loss. I was incredibly taken aback when I read in the paper about Rick's 2 yr old son's drowning. I was a devoted listener to their morning show until it was taken off the air here in Huntsville a few months ago. (Edit: just found out it's now on 100.3 - yea!) It's crazy how I keep learning about good Christians losing loved ones. So much is out of our control.

Even though I have experienced a loss and am surviving somehow, I look at Jack and am sure that I would lose my mind if he died. It makes me want to hold onto his hand, and never let him leave my sight again. But we must simply live our lives to the fullest and be grateful for every breath that we breathe.

Here's a link to a blog about a young girl's near drowning. I came upon it when I was checking out crock pot recipes - go figure! Her story is beautiful.

Please Pray!

2008-01-17T17:05:00.000-08:00

I was just about to write about how Bernadette's 3 mos anniversary was today, and that I felt that I was making great strides in the healing process. But then, I discovered that a friend of mine from a Catholic forum I'm on just lost her full-term baby today. I just want to scream with anger - why does anyone else have to go through this? It just isn't right! The horror of October 17 has just come flooding back, and I actually wish that I could go through it again so that she could have her precious baby back. My heart physically aches for her.

I don't even know what else to say. Please pray for her and her family. Her name is Danielle and her sweet boy's name is William Patrick.

little saint Bernadette, please pray!
Amen

Relinquishing Control

2008-01-12T09:23:00.001-08:00

Naive. That's the perfect word to describe myself prior to Bernadette's death. It's sad that my daughter had to die in order for me to grow up. I thought I understood what faith and trust in the Lord meant, but I had no idea. On The View this week, Joy Behar claimed that all the Saints were crazy, and we simply mistaken their craziness for holiness. Despite the absurdity of her comment, it got me thinking about all the Saints that have gone before us. Most of them bore tremendous crosses that the majority of us can't fathom carrying. Mother Teresa often felt as if she were abandoned by God. She, and many Saints, questioned God's existence during the dark trials of their souls. Yet they continued to serve the poorest of the poor, they witnessed to others, they walked their lives of faiths despite (or maybe because of) their crosses. I should feel honored to suffer, although this certainly isn't something I asked for. I shouldn't ask what I did wrong to deserve it; rather, I should ask how it makes me a better wife, mother, and friend.

One of the things that I struggle with is not knowing what the future holds. I look at families with multiple children and become frightened that the yearning in my heart for a large family may not be God's plan for us. My pride makes me wonder if God thinks I can't handle it. And instead of directing my energy towards prayer during this difficult grieving process, I spend my time worrying that we may never have another child. It's a dangerous road to walk, because it only leads to more anger and less acceptance of God's will. So, lately that has been my plea...that somehow, I may surrender my will and know that we are taken care of. And most importantly, to be thankful for my devoted husband and my adorable son and daughter.

Suffering

2008-01-01T19:43:00.000-08:00

One of the many things I dwell on is whether or not Bernadette felt pain in the moments before her death. I remember when Jack was very young, and we were visiting John Mark's parents. He was asleep on the bed upstairs, and as the rest of us were eating breakfast in the kitchen, I faintly heard his cries of terror. I ran up the stairs and found him on the floor, screaming in fear. I remember feeling so helpless and horrified that I allowed him to fall off the bed. There's nothing like watching your child get hurt or fall ill. So, I think about that day in October and wonder what it was like for her. Did she die in her sleep? What if those last kicks I felt before I left for my ultrasound were of her struggling? (Sorry, I know these images aren't exactly pretty, but I'm trying to be honest about the futile battles I experience in my mind.) Anyway, something I've come to realize is that the past is just that - the past. Regardless of whether she felt pain, she certainly isn't feeling it now. I need to transform my image of her death into what it truly is - a new life, an eternity in heaven. If only I could accept the fact that she's better off there, instead of in my arms. I imagine it's nearly impossible for any mother to accept that.

On a completely separate note, I wanted to ask you all to pray for a woman named Tricia who I found out about from a forum I frequent. She has Cystic Fibrosis and was preparing for a lung transplant when she discovered she was pregnant. She is currently 24 wks along, so the transplant has been postponed until the baby is delivered. Please pray for the physicians who have to help decide how long to go before performing a C-section. The longer they wait, the better chances the baby has of surviving. But the longer they wait, the greater the risk for Tricia. Her husband's blog is: CFHusband.Blogspot.Com

Edited to add: Tricia's website is http://65roses4pattysue.com/

A New Year

2008-01-01T18:57:00.000-08:00

As painful as 2007 has been for me, it is hard to say goodbye. It's as if I am walking further and further away from my daughter, leaving her behind in some place that I am forced to abandon. But in actuality, I've got it all wrong. Fr. Phil, our priest, stated it so well in his homily today: those who die become more fully human, more complete, than we ever knew them to be on earth. They are closer to us, even more so than the people whose hands we can physically touch. As I sit here at my desk, I imagine Bernadette's perfect hand on my shoulder. She is praying for me in my sorrow and knows how much I love her. She watches me sleep, she watches me kiss her father and big brother as we start our day together. She watches Jack get into trouble, she laughs when we laugh, and wipes away the tears that we cry. How beautiful that is! She's as much a part of our family as she would have been if she were alive. She is our patron saint, our intercessor, and I feel so blessed to have her ever present in our lives.

I know this sounds ridiculous, but something I have a hard time with is when someone asks how many children I have. On the way to John Mark's parents' house for Christmas, we stopped at a Waffle House. The woman sitting behind me asked if Jack was our only child. I hesitated, but finally answered "yes". I regretted it as soon as I said it. How dare I leave Bernadette out of our family! The next week, someone in Kroger asked the same question, and I just quietly answered "he's my only living child." Along those same lines (well, not really), I hear a lot of moms who have experienced still births say one of the challenges is having the body of a post partum mother, yet having no baby to show for it. You're leaking milk like crazy, painfully engorged, your abdomen is flabby, and you are 20 lbs heavier. It seems superficial, yet insanely cruel at the same time. I remember taking a shower in the hospital before being discharged, and I refused to look down at my belly. I felt so ugly, knowing the dramatic changes my body had gone through, and it felt like it was all for nothing. So, if you know someone who is going through a still birth or loss of a newborn, make sure you tell her how beautiful she is, despite the rolls of extra skin, the bags under her eyes caused by the sleepless nights, and the gigantic boobs.

Burdens

2007-12-21T23:17:00.001-08:00

I think most of us realize that our society thrives on convenience. For those who know me, you know how nutty I am when it comes making things from scratch. I never seem to take the easy road (which is often the smarter road, mind you)...why not make all the centerpieces for our wedding instead of hiring a florist to do them? And forget frozen chicken fingers, steak fries, chicken broth, and pizza. I'll just make it all to save a few dollars. Canned soup? Whatever, I'll just spend 3 hours making my own batch.

I imagine that many people think that the fact that our daughter died is sort of a relief. It's so much more convenient now that we don't have to live away from home, spend hours lying awake in the hospital. We don't have to worry about wheel chairs, physical therapy, or feeding tubes. But when it comes to your child, none of that matters. No, I can't speak for those parents who have sick or special needs children - they have it hard, and I can't pretend to know what it's like - but I can assure you that they don't think twice about what is "easy". All they care about is their children's health and well-being. I would move to the Sahara Desert if it meant that Bernadette were with us today - convenience just isn't an issue when it comes to your own flesh and blood.

I think that's what our society is missing in a way. We're always so quick to find solutions to a life of happiness and ease, and suffering is avoided at all costs. We're forgetting that suffering only leads to a deeper love for others and appreciation for our lives. I think that's one of the things I love most about my Catholic faith - the idea of redemptive suffering. So much grace flows from the crosses we bear. Souls reach heaven, sick people are healed, the dying are comforted through the pain, sorrow, and sacrifices we make. How beautiful it is that we are all united in that way.

So, please please pray for moms who are faced with the decision to abort their babies because of adverse prenatal diagnoses. They need to know that their children are worth fighting for, and that so much good will come from their lives, however short or long that may be. Taking the easy way out just isn't worth it...when you see that sweet child's face on her birthday, you'll realize that nothing else matters but the love you have for her.

Beautiful in God's Eyes

2007-12-17T08:23:00.000-08:00

There's nothing that says Merry Christmas more than being handed your daughter's autopsy report. Sorry for the sarcasm...this just seems so unbelievable at times. It's hard to describe the guilt that I feel as a mother. Bernadette lived within me for 9 months, and I can't understand how and why I couldn't do anything for her. It's crazy how complicated her condition was, yet at the same time, I am angry and hurt that no one told me what a high fatality rate is associated with it. No perinatologist, besides the one I saw the week before her death, suggested that she would die. I'm not sure if they just didn't have a full understanding of her anomalies or what, but I wish I could've been at least a little bit prepared. The report states that she had omphalocele-exstrophy-inperforate anus-spinal defects (OEIS) complex (which I pretty much knew), "which is almost always fatal". I made the mistake of googling OEIS just now, and the first research article that was listed described the postmortem exam of an aborted baby. She was so beautiful, and I guess since I'm so used to seeing photos of exstrophy kids, it was easy to overlook her problems and only see a sweet little baby who died too soon.

So, the autopsy report states that Bernadette's cause of death was due to multiple congenital anomalies. You might be thinking "well, duh", but since almost none of the doctors I spoke to
suggested that she wouldn't live to see her birthday, I was concerned that her death was caused by something like an abrupted placenta or a blood clot in her brain. Something that "just happens". Not that that would've made me feel any better, but as her mom, I felt quite unsettled not knowing how she died. The list of abnormalities is overwhelming, although most of them we already knew. However, I didn't realize that she was missing a gall bladder or that there were anomalies in her thoracic spine. Or that her liver had an extra lobe. She did have 2 ovaries and fallopian tubes, and her uterus was split in two. Her kidneys, pancreas, lungs, stomach, heart, and brain looked beautiful.

No matter how emotional this is for me, no matter how much my heart aches when I look down at this 8 page report or when I relive her death in my mind, she's at peace. She feels no pain. She is with all the saints and angels, praising the One who created us. She is with God. And for her, everyday is like Christmas.

Reliving

2007-12-03T18:05:00.000-08:00

There will always be triggers that will cause me to relive October 17. When I went in to get my wisdom teeth extracted last week, just having the nurse administer my IV brought me to near tears. It was like I was in L&D all over again. Going to my OB's office for my post partum checkup today was obviously painful, but honestly the hardest part was taking the elevator up to the 4th floor and opening the door that I've opened up a dozen other times. Except this time I wasn't anticipating hearing my daughter's heartbeat on the Doppler or getting my belly measured.

I am often afraid that my friends and family are tired of hearing about my loss, or at least will if I continually bring it up . Jack doesn't ever seem to mind, so I'll often talk to him about how much I miss his sister and how much fun they would have had together if she were alive. I hope he grows up knowing and loving Bernadette. She is such a great intercessor for him and our family, and I really want him to understand who she is and how much she means to us.

It's funny how the emotional ride that I am on can be so unpredictable. Often, I find myself getting into the groove of my old routine, then it hits me all over again. The past couple of nights I have spent just aching for my daughter. My chest feels weighted down, like she is in my arms and I am holding her tightly. The little lifeless body on the ultrasound screen flashes in my head repeatedly, and it's as if it were yesterday. I wish I had some warning when the hopelessness would overwhelm me, but at the same time, I'm glad I am able to enjoy the good moments w/o worrying whether I should feel sad or happy. I will experience both emotions. A lot. And it's okay if I enjoy life one minute, then the next, bawl my eyes out.

Well, there really was no point to this entry except to post a picture of Bernadette's burial plot. I plan to call Johns Hopkins tomorrow to see if they ever completed the autopsy report. I will update everyone if I hear anything.

Down the Road of Bittersweet

2007-11-21T16:13:00.000-08:00

It's funny who you meet when you are faced with a major tragedy. A friend of a friend of a friend heard about Bernadette when we first found out about her condition and emailed me. She also experienced a scary prenatal diagnosis - her daughter was found to have Trisomy 13. Her beautiful little girl was delivered at 35 weeks and spent 50 precious minutes with her parents before she passed away. Her story and those of other families have really helped me realize that I'm not alone in this. Their testimonies can be found at a great website, Prenatal Partners for Life, which is for parents who discover that their unborn babies have serious conditions that are either incompatible with life or will require extensive treatment. There is little support out there for moms and dads like us. Doctors ask or may even encourage the parents to terminate their pregnancies. Surgeons may refuse to perform certain surgeries if the child is known to have a fatal birth defect. Almost all cloacal exstrophy kids are aborted, even though those who do live (it has a 90% survival rate) live full, rich lives. So, I'd like to encourage parents in similar situations to find support and talk to those who have been there. Please know that you are not alone. You will get through this, and there is a purpose for your baby's time on earth, however short it is. You may never understand why you have to carry such a heavy burden, but know that there is hope. Not a day goes by that I don't wish with all my heart that Bernadette was here with us today. But at the same time, she is here. She resides in me and my family and those whose lives she's touched. I know she is interceding for us at this very moment, and we are a stronger family because of her.

The title of my blog entry is that of a song on the Prenatal Partners for Life homepage. There is no better word to describe the past year. Bittersweet. I am so thankful for the 9 months I had with Bernadette. So much good has come from her short life. And although the grief I feel is often unbearable, I don't regret for an instant this road of bittersweet.

One month seems like forever

2007-11-16T06:25:00.000-08:00

Tomorrow is the 1 month anniversary of our baby girl's entrance into heaven. A month that seems like an eternity to me. (No pun intended.) Sometimes I wonder if it has truly hit me that our baby died. I mean, I think I get it, but it is such a horrific reality that I wonder if maybe my heart just hasn't grasped it yet.

The ultrasound still haunts me, the memories of labor and delivery still wake me up at night. But now that we are several weeks past my scheduled C-section (Nov 1), I am starting to think more about what might have been. I can idealize...I can imagine her here at home, soundly sleeping in my arms. But the reality is that she would've been in a hospital crib, hooked up to a respirator while she recovered from surgery. She would've been eating through a feeding tube, not from my breast. I would be spending hours watching her breathe, hours spent away from Jack and John Mark. It wouldn't have been a vacation by any means. That of course isn't to say that I wouldn't give anything to have her with us right now. But something that John Mark brought up with me yesterday is that this whole grieving process started 6 months ago. It's a pretty big wakeup call to find out that your child is sick. Really sick. That her condition is so rare and complicated that our best option is to pack up and move 700 miles away to get her treated. Every time we drove to Birmingham for an ultrasound, we were in for even more hard news. We gradually discovered that our lives would be changed forever. But the problem was that we never had a chance to grieve that reality. We were too busy preparing for her arrival. So, when she passed away, it was like we had climbed to the highest point of Mount Everest only to get buried in an avalanche. All the pain from that climb was still present within ourselves, even if it seemed insignificant compared to the pain of her passing.

The uniqueness of our experience is important when comparing myself to others who have lost loved ones. In other words, it's pointless. No one has the same story. Even if you just look at those who experience death of an unborn baby. One mother loses her child at 7 weeks, another learns at 20 weeks that her baby has anacephaly and won't live for more than a few moments after birth. Another mother is busy decorating her daughter's nursery...she is 39 weeks pregnant and her healthy baby is about to arrive at anytime. She has no doubts or fears in her mind besides the usual anxiety and anticipation of labor. Then, when she arrives at her OB's office for a routine non-stress test, they can't find the heartbeat.

All of these situations are different...these moms have all lost their children, they all grieve and mourn. They cry, they ask "why me?", they are scared that they will never find joy again. But the grieving process is going to be different for each of them. Not because one scenario is worse than the others - they all are terrible and tragic - but because the experiences up to that point are different. So, I can't compare myself to other moms. I have yet to meet someone who has gone through what we've gone through...not many people are faced with the decisions that we had to make. Also, we all have different levels of support. The parents who miscarried may not have told anyone that they were pregnant, so they may not even have anyone to pray for them. Many moms don't have strong faiths that keep them going. Others may have other issues like infertility that make them wonder if they will ever be able to have a child. For some, their stillborn baby was their first, and they have to deal with going back to work.

So, I can compare myself to other grieving moms and say "I have it so much worse because we moved to Baltimore for her only to come home with empty arms. I have it worse because I went full-term and had to deliver a dead baby after spending 9 months bonding with her." But it's not worse. I am blessed with an amazing network of friends and family who have completely overwhelmed us with love, prayers, and support. I am blessed with fertility, so God-willing, we will hopefully be able to give Bernadette more brothers and sisters. I am blessed with an amazing son who is like this beacon of light in my life. I am blessed with a strong and devoted husband who has a faith that can move mountains. So, like I said, what's the point? We all have our stories, we all have our own ways of dealing with our pain and sorrow. We all have incredibly heavy crosses to bear. I can certainly learn from moms who have "been there done that", but there's no reason to worry that my path to healing isn't just like theirs.

One moment at a time...

2007-11-11T18:40:00.000-08:00

1 weeks since Bernadette's funeral...3.5 weeks since her passing. Time moves so slowly as I learn to cope with her death. Staying busy helps, but I am finding that it's important to have that quiet time where I can be alone and think about her. Where I can remember my pregnancy, all of the mountains we had to climb to get us to 37 weeks, to remember that fetal echo where I discovered she was gone, to remember being wheeled into labor and delivery so that I could give birth to her. It's excruciatingly painful to remember those things, but it's important. Because if I bury the memories now, I won't have a chance to get used to it. I need to accept the fact that she is gone. I need to accept the fact that even though I can't think of anything worse than losing a child, things like this just happen. I will never understand why we were chosen to carry such a heavy cross. I will never understand why Bernadette had to die. But I have to accept it, learn from it, be a better mom because of it, be a better wife, friend, and Christian because of it. And I can't accept it until I get used to it. I need to deal with my emotions now. Deal with the pain, the helplessness, the anger, the sorrow. It sucks, and I'd give anything to be in the NICU right now, holding my daughter's hand while she lies there, recovering from surgery. I'd give anything to wake up every 2 hours to pump milk for her, to sleep on a stiff chair beside her hospital crib. But she's gone. I wish there was a word in the English language that could express just how much I miss her.

The nights are still the worse. If I wake up at any point, that's it. I might as well mow the lawn or organize the garage, because I'm not going back to sleep. I am now calling it my 'torture time' because it's pretty much when I relive the horrors of these past months. It's like this video that keeps replaying itself over and over, and there are no distractions to keep them at bay.

I can also see why people have a hard time with the holidays. I don't have any memories of being pregnant with Bernadette during Thanksgiving and Christmas, but since the focus is so strongly on joy, children, being together as a family...well, it's not hard to feel completely lost, like "hello, why is everyone so happy? My baby just died...how can you just get on with your lives and be so excited about some dumb turkey dinner and Santa Clause?" It's funny how I expect the world to stop and everyone to be as grief-stricken as me.

Now that I've totally depressed whoever is reading this, I will try to end on a good note. Jack and John Mark are doing a great job at keeping me from totally losing it. Jack gets me out of bed each morning by squealing from the other room, completely oblivious to the fact that no one in his right mind is this excited when the sun hasn't even risen yet. I am so blessed to have such a happy little man who keeps me busy by tearing apart the house and throwing sand all over the back porch. Suddenly, I find great comfort in the mess he creates. John Mark is always aware of when I need to get out of the house or when I simply need a shoulder to cry on. He has even gotten me hooked on Guitar Heroes III and Wii Sports. Nothing like a little boxing to take care of my frustration. And my friend, Leigh, has invested so much of her time in keeping me busy, that I find a lot of my day is spent laughing and enjoying the simple pleasures in life like Southern Living recipes and taking walks with the kids. Thank God for friends who keep me sane!

By the way, here is a picture of Ben and Jack with Santa. In case you can't tell, Jack is the one screaming bloody murder, refusing to believe that Daddy would surrender him to a scary, white-bearded man in a furry red suit.

Donations

2007-11-04T18:45:00.001-08:00

I wanted to thank our friends who generously donated to the Association for the Bladder Exstrophy Community in memory of Bernadette. This organization is the only one of its kind and offers tons of support for exstrophy kids and their families. If you would like to donate in honor of our daughter, go here. Their home page is www.bladderexstrophy.com.

Thank you to everyone who attended Bernadette's funeral. We were incredibly touched by your sincerity. I can't express enough how powerful your prayers and support are for us during this difficult time. May God Bless you all in your kindness and compassion.

We miss you, little one, and we are so excited for the day when we can finally be reunited!

Grace

2007-10-30T09:08:00.000-07:00

If I could have a lifetime wish,
a dream that would come true
I'd pray to God with all my heart
for yesterday and you.
A thousand words can't bring you back.
I know because I've tried.
And neither can a million tears;
I know because I've cried
You left behind my broken heart
and happy memories too.
I never wanted memories,
I only wanted you.

I discovered this poem and decided to post it, because it perfectly describes what I've been through these past 2 weeks. It amazes me how much I have changed since that moment I discovered our sweet Bernadette had passed. In an instant, I recognized our mortality, our lack of immunity against suffering and tragedy. It is only by the grace of God and many words of wisdom from other moms who have walked this road that I have gained hope that I will survive this, that our daughter is indeed in heaven, being held and loved by Our Mother and her Son. Without grace, I honestly don't know how I would find the energy to get up in the morning, let alone experience joy again.

So, hopefully I will someday learn to accept that I may never know why Bernadette had to die. I may never realize what graces have been poured forth into our family and into those touched by her short life on earth and in heaven. I don't think I'm there yet, but I am relieved that I am able to pray again, even if it's simple utterances of His name while I lie awake at night in darkness and sorrow.

I don't really know the point of my blog at this point. My original intention was to both educate other moms whose children have been diagnosed with cloacal exstrophy, as well as to keep family and friends updated on our situation. But obviously, things didn't go as planned. Hopefully, I will be able to continue sharing my thoughts as I grieve and heal from our loss. Maybe moms who experience stillbirth can learn from my experience...I know that much of my healing occurs from talking to others who have lived through such a tragedy.

Our Baby Girl

2007-10-29T10:39:00.001-07:00

We have a daughter in heaven - her name is Bernadette Marie.

I think we always knew deep down that it was a girl, even though there are many more boys than girls diagnosed with cloacal exstrophy. We got some of the test results back. Nothing is finalized, but her cause of death doesn't seem to be due to a chromosomal defect. I was shocked by my reaction - I wanted it to be chromosomal because that would mean her body just wasn't compatible with life - in my mind, I was beginning to accept that. I don't know how I'm going to handle it if I find out that it was something that just happened, that if she was delivered but a day earlier, she would be here with us right now.

It will take some time for the autopsy report to be finalized, but I guess I have to prepare my heart for the distinct possibility that we may never know why she died. Please pray that we may find some closure in all of this. Thank you,

Michele

Funeral Arrangements

2007-10-26T10:12:00.000-07:00

We scheduled the funeral for Saturday, November 3 at 2:00pm. A small reception will follow at our house. If you would like directions, please email me at michele.b.weber@gmail.com.

Edited to add:
Now that everything is finalized, I wanted to make sure y'all knew that the funeral is of course open to everyone. We will have a private burial at the cemetery immediately following the Mass, but we plan to head to the house right afterwards. Everyone is welcome to come, and like I said, you can either email me for directions or follow someone else to our house. It's about 5 minutes from the church.

A Bittersweet Goodbye

2007-10-25T15:03:00.000-07:00

Well, we made it home. I didn't think it was possible to hurt any more than I already did, but yet sitting there in the room she was to share with Jack, with her picture in my hand, I couldn't shake the sadness or emptiness I felt. Our little baby was supposed to be in that back seat on that long trip home, staring and babbling to her big brother, Jack. It was supposed to be January, and we were supposed to have gone through weeks in the hospital to help her heal and live a normal life. It's not supposed to be October, the infant seat shouldn't be stashed away in the trunk, empty. This isn't happening. Why haven't I woken up from this nightmare yet?

So, saying goodbye to Baltimore was a relief, yet I yearn to be back there, waiting for that moment to arrive when we would welcome our little one into this world. I feel like I left a piece of her there, I abandoned the hope and promise that she was going to be alright, that she was going to come home and be a part of our family. The pain is unbearable, and I ask for your prayers that I may be relieved of it if even for a few moments.

My neighbors have been amazing. We came home to a stocked pantry and fridge, clean bathrooms and kitchen, vacuumed carpet, and pots of flowers in every room. We couldn't ask for a warmer welcome! Its details like these that make me realize how much I've taken friendships and community for granted. Hopefully, someday, I can pay it forward to another family in need.

Thank you

2007-10-22T15:48:00.000-07:00

I wanted to say thank you to those who have brought us meals these past few days, who have offered up their prayers for our family, and who have contacted us with their concerns and love. It has been a difficult week. Much of the day, I struggle to put one foot in front of the other. I feel raw and angry. I want my little one back...I want to hold her, nurse her, tell her how special she is. I feel like my most cherished treasure - my own flesh and blood - has been taken from me. Unjustly. I know that our lives are not really ours...but I don't think I can ever comprehend why this little life could not be spared. I want to believe that she can see my face and know how much I love her. That she is resting her perfect little hand on my shoulder, comforting me in my sorrow. God, please let me meet my little baby in heaven someday.

We are still in Baltimore, waiting for the finalization of our child's cremation. I wish so much that there was some way we could bury her without cremating her first, but we need to bring her home with us, so that we are able to visit her often. I will keep you posted on any funeral arrangements. We plan to celebrate a Mass for her in the upcoming weeks.

Please pray for strength, as I struggle to find hope and peace again. And may God bless all those who mourn the loss of their children. May their tears be wiped away and their joy renewed.

God Bless,
Michele

A Joyful Day in Heaven

2007-10-19T10:22:00.000-07:00

Our little baby passed away on Wednesday, October 17. They induced me, and I delivered her at 1:48pm on Thursday. She was 5 lb 8 oz. We aren't sure of the sex b/c the genitals were ambiguous, but we will let you know once the kerotyping results come back in a couple of weeks.

I went in for a fetal echo on Wednesday, during which they couldn't find a heartbeat. I knew something was wrong as soon as the chest showed up on the screen with nothing moving or beating. It was the darkest hour of my life while I waited frantically for John Mark, who had to find someone to watch Jack before he drove 40 minutes to the hospital. I remember shaking uncontrollably, refusing to put my hand to my belly to search for movement. The baby was breech, but they chose to induce anyway. They started cervidil that night. I was 5 cm dilated by the time they started the pitocin 12 hours later, so it didn't take long before my water broke and I started pushing. I got an epidural at some point during labor, but it only numbed my right side. When I began pushing, I was convinced I was in hell. I was terrified of what our baby might look like, of coming face to face with my greatest nightmare, and I simply couldn't comprehend how I was going to have the strength to push this child out only to have silence follow. The pain was horrific - I really don't have any idea how moms go through natural labor willingly. Finally, the child's behind (he was frank breech), then legs, came through. The head was last, of course. John Mark went over to see our deceased baby, and the perinatologist discussed with him some of the anomalies that might suggest a chromosomal defect. He had 2 thumbs on his left hand, and his right lower leg was split in 2, with 2 nubs instead of a foot. His eyes were slightly slanted, and his lips were thin. Part of the colon was outside the omphalocele, and as I said, the genitals were split in 2, and it was too hard to tell if it was a girl or boy.

I didn't have the emotional strength to see the baby until they wrapped him up and placed him in my arms. I'm sure all of Labor & Delivery heard my sobs. He was the most beautiful little thing I had ever seen, with perfect reddish-brown curls on his head and a soft nubby nose.
I don't think I will ever forget the helplessness I felt during that moment with him. How could I let this innocent little baby die? How could I not have noticed the ceasing of movements on Wednesday? Why didn't they just rip me open and try to revive him? Why did it have to end like this, after we dropped everything to move to Maryland to try to make things right?

I must say, however, that the care and support I received at Hopkins was incredible. The doctors and nurses were always focused on making things as comfortable as possible for me. They were full of encouragement when I was convinced I wouldn't be able to go through with it. The nurses cried along with us, and I almost felt guilty that I had to put them through such a terrible experience.

I was able to come home today, October 19, b/c I only slightly tore and recovery hasn't been too complicated. It's John Mark's birthday, and I couldn't think of a worse birthday gift, lol. We both feel at peace b/c we are too aware of all the pain and suffering this child would've gone through if he lived (due to his condition). But the emptiness I feel is overwhelming. None of this seems right. So, please keep our family in your prayers. We are probably going to head home to Alabama in a few days, once I am able to sit up and walk more comfortably. We are having our child cremated so that we can bring him home with us and have a proper funeral and burial. They are currently performing an autopsy to determine the exact cause of death.

I will keep you posted on any updates. Thanks again for all your prayers and support!
Michele, John Mark, Jack, and our little saint

36 week update

2007-10-11T17:33:00.001-07:00

I apologize for the delayed update. We are getting settled, so I am finally able to spend a few minutes on the computer. John Mark drove us up to Baltimore last weekend, then flew back home on Monday. We are staying with friends who have so willingly taken the time to watch Jack and cook us dinner while I spend the days at Hopkins. A few weeks ago, I developed sciatica, and it has been really tough getting around and caring for our active little tot. So, John Mark decided to wrap things up in Huntsville, and he's en route as I type - yea!

I have been busy this week with surgical consults and prenatal checkups that left me emotionally drained and more anxious than ever to deliver this baby. Dr. Jallo, the pediatric neurosurgeon, stated that if she has closed spina bifida, we can wait to get it treated by Dr. Oakes in Birmingham. If it's open, they will fix it immediately. Dr. Sponseller, the pediatric orthopedic surgeon, prefers to do the osteotomies (readjusting the pelvic bones) when the baby is closer to 2 yrs of age, although Dr. Gearhart often likes to have it done when they are newborns. I was quite surprised by this, because it would mean a shorter initial stay and another longer trip later when our child is older. I imagine it will be very tough to deal with having our little toddler in traction for 8+ weeks, but I obviously trust their joint decision on this. I will keep you posted on what they decide.

My ultrasound wasn't super encouraging, b/c the physician that saw me (not Dr. Crino) was concerned that a chromosomal abnormality could be the cause of her condition. Her reasons were based on the fact that the baby's right leg was measuring very small, and she didn't think it was necessarily related to the cloacal exstrophy. She even claimed that the femur was measuring small, which was a new development. I refused an amniocentesis b/c any findings could potentially alter their decisions on treatment (i.e. they can deny to perform certain surgeries if she has a lethal defect). They also found only 2 umbilical cord vessels instead of 3. This occurs in 5% of pregnancies (and they might have already observed this in previous u/s, but this was news to me), but the doctor scheduled an echocardiogram for next week to make sure her heart is doing ok. I am also having to do non-stress tests 2 days a week b/c the baby is measuring small and they want to make sure her heart rate and movement are okay. I had my first one today, and everything looked great! I have been tempted to get really discouraged by this doctor's suspicions, but I really do sense that everything is related to the cloacal exstrophy and is not chromosomal. We'll find out soon enough!

My last appointment was with a perinatologist to do some basic prenatal care stuff. She didn't check my cervix, although when I was in Labor & Delivery a few days ago to make sure my back pain wasn't due to contractions, I was not dilated (my cervix was soft, however). Anyway, the baby is breech with his head digging into my ribs, and although that can very well change, she wanted to schedule a C-section for November 1 (The Feast of All Saints!). If the baby moves to the normal position before then, and I still haven't delivered by 39 wks, they will induce and I can attempt a vaginal delivery. She suspects that I won't go that long, but I'm not keeping my hopes up. Women in my family just don't deliver babies early. :)

Anyway, I apologize for not keeping in better touch with you all individually. Every moment I'm not at Hopkins, I am trying to spend with Jack or helping around the house. And since Jack has been blessed with his 2nd cold of the season, neither of us are sleeping much. (I am counting the hours until John Mark can be here and take over night duty! lol)

Thanks again for all your prayers, support, and gifts. We couldn't have made it this far without them!

Winding down...

2007-10-02T08:16:00.001-07:00

Well, our days in Huntsville are winding down. I feel hugely pregnant and wonder how I'm ever going to make it through 2 days of driving, lol. John Mark insists that we are stopping at every rest stop so that I can walk for 30 minutes. Is he nuts?! Maybe I can convince him that 10 min of walking is sufficient. ;-)

Anyway, I'm posting to thank our friends and family here in Huntsville who have helped us in so many ways while we prepare for our little one's arrival. Our neighbors who are dear friends of ours have offered to watch our house and our cat (who will surely be relieved of Jack's absence, lol). They have given us so much support during this waiting period, and I can't thank them enough! Jack will undoubtedly miss his buddy, Ben, and his big sister, Anna. Our families went to Tate Farms last weekend, and I honestly don't remember having that much fun in a long time. I am still finding corn in the laundry room and the sock drawer!

John Mark's aunt and uncle held a surprise baby shower/going-away dinner for us this weekend, as well. We were so grateful for the farewells and the gifts we received! Our pastor came to the dinner and said a special blessing over us...I was very moved by his commitment to minister to families like ours who can often feel like the cross given to them is too heavy to carry alone.

Oh yeah, another thank you...my hubby's company is being incredibly generous by allowing him to work away from the office for an extended period of time so that he can be with Jack and me in Baltimore. Despite the hours he will have to put toward work, I am so relieved that he will be with us...John Mark has the amazing ability to see the positive in every situation, and I know his sense of humor will keep us emotionally afloat during the upcoming months!

OK, enough with the mushy stuff. I better get packing...Jack is notorious for taking short naps when I have a long list of things to do. ;)

Take care,
Michele

Last trip to Birmingham

2007-09-27T07:46:00.000-07:00

I had my last ultrasound done in Birmingham (I've been going every month to monitor the baby). Things are looking great. There is a slight chance her right fibula is actually there, but the bones are really thin and the leg is short, so it's hard to tell. And he actually saw part of the bladder! That was the first time there was any evidence that it existed (albeit split in half, most likely).

Other than that, things are the same. He thinks he sees part of the liver in the omphalocele, but it's not a significant amount, so the size of the O probably won't hinder my ability to deliver vaginally. He may see a slight gap (or opening) in the sacral region of the spinal column, but it's too hard to tell. The fact that there are no abnormalities in her brain size or structure is a good indication that it's probably not open spina bifida. There is definitely scoliosis of the spine in the lumbar and sacral regions, as well as some hemivertebrae. Again, we can't know for sure the significance of that in terms of paralysis and innervation of the bowel and urinary tract. We'll find out soon enough.

So, in a week, we are off to Baltimore. I don't feel any contractions or anything, so I'm hopeful that we'll make it up there with no problems. We'll keep you posted!

Thank you!

2007-09-23T08:31:00.001-07:00

I just wanted to say a quick thank you to all who have so willingly offered to help us. It really is overwhelming. For those who are boarding Jack and I while we await our baby's arrival, who have offered to babysit Jack while I go to my doctor's appointments, who have offered frequent flyer miles, meals, winter clothes for Jack...I can't put into words how much we appreciate your generosity, hospitality, and Christian charity. It is certainly humbling to accept your gifts, knowing that there is no way we could ever repay you. Just know that you are in our constant prayers!

Michele, John Mark, Jack, and Baby

It's official!

2007-09-06T19:23:00.000-07:00

We're going to Hopkins. :) It finally hit me when the perinatologist's assistant called today to list off the numerous appointments I have the 2nd week in October. That's after driving John Mark to the airport and saying goodbye, with the expectation of not seeing him for possibly 3 weeks. It's going to be a long month.

The good news is that our friends who live outside of B'more have offered to house Jack and I until we deliver the baby! Wow, what an answered prayer! (Particularly after seeing the prices of extended-stay hotels in the area.) It will also allay my fear of bringing Jack with me to the hospital while I'm in active labor. To know that someone can watch him until John Mark and/or my folks arrive, brings infinite comfort! It's hard to accept such generosity, but I know that it's time to humbly say "yes" when others offer their help. I only wish I could repay them in some way.

I'm going to miss my home...I honestly don't really know how I'm going to handle being away for so long (probably 3 months or more, I suppose?). I wasn't too impressed with Johns Hopkins in the way of hospitality - there is no place for Jack to run around (which he needs to do on an hourly basis in order to stay sane), the food stinks, and there are a gazillion people going in every direction at all times. I hear that parents even have to pay for coffee on the pediatric floor. At many hospitals, I've heard of parents receiving free meals while their kid is receiving treatment. Looks like I'll be packing a lot of peanut butter sandwiches! I also really don't like that the hospital is surrounded by sketchy neighborhoods. Hopefully, we'll be able to find a trusty public library or playground to allow Jack to spread out a bit. :)

So, I'm in the process of getting my life in order...figuring out a winter wardrobe for Jack and I (winter is coming much earlier for us this year!), stocking our freezer with meals for John Mark, transferring files to the lap top, buying plane tickets for John Mark and planning our drive north. Making sure I pack everything I need w/o having to rent a Uhaul. ;-) This is so not a small task, considering how tiny our car is. Jack's stroller takes up half of the trunk! lol.

So, please continue praying for our family. We are so excited to have the opportunity to receive treatment from Dr. Gearhart and his crew. We pray that our little one stays warm and cozy in my womb until we are safely in B'more.

I'll keep you posted!
Michele

On to Hopkins...

2007-08-22T08:03:00.000-07:00

Well, we are back from Baltimore. If there is one thing I've learned this summer about traveling with a toddler, it's that you simply cannot leave home without a bag of lolly pops and a large package of baby wipes. Those 2 things can make or break your sanity. :)

Anyway, our consults went extremely well. We first met Dr. Gearhart, who was incredibly personable and smart. I immediately felt at ease about our child's condition when we talked with him. You just can't beat getting treated by someone who lives for babies with cloacal exstrophy!

We then had an u/s done by Dr. Crino. It was the best u/s yet b/c it didn't reveal any new problems. (That's a first for us.) Here is what we are dealing with:
1. A beautiful little one who loves to squirm and get into the worst positions possible while being observed on u/s. She's undoubtedly shy.
2. They cannot see an open spina bifida, although it was too hard to see in the u/s. They do see some scoliosis, hemivertebrae, and overall some deformity of the spine in the lumbar and sacral regions.
3. The pelvic bones are definitely spread out pretty widely.
4. The left foot is mildly clubbed, but the leg is measuring the correct length.
5. The right foot was too hard to see, but they are pretty sure her right fibula was missing. The leg looks a good bit smaller, as well.
6. She has a moderately-sized omphalocele (O) and exstrophy of the bladder, hence confirming the diagnosis of CE.
7. They still could not determine the sex.

A couple of great things that we learned during our visit with Dr. Crino were:
1. Her cerebellum looks good, so the chances of open spina bifida are lower.
2. She has 2 healthy-looking kidneys. Oftentimes with CE, the baby is only born with 1.
3. She was moving her left foot while we were observing it, and that indicates that she's probably not paralyzed - yippee!
4. Her heart was beating at a healthy rate - another yippee! Gosh, I can't tell you how wonderful it feels to see her beautiful 4-chambered heart beating.

He believes that since I was able to deliver Jack vaginally, that I can deliver vaginally this time, as well. They only like to perform C-sections for obstetric reasons, like if labor isn't progressing well or whatever. The O doesn't look too big to fit through the birth canal. Also, since Jack hung out in my womb until past my due date (I was induced 3 days after, and I wasn't even dilated at that point), the chances of me going into pre-term labor is small, so, he doesn't feel that there is a need to move to B'more before 37 weeks. Then, I will just wait it out and hopefully go into labor naturally. At ~39 wks, they will induce if necessary.

This news was huge for me. If the above paragraph was all I heard on Monday, it would've made all the inconveniences of traveling to B'more this week worth the trouble. Our plan is actually to arrive at 36 wks, since it will be a long drive, and things like sitting in a tiny Honda Civic is getting more and more uncomfortable everyday. The Children's House at Johns Hopkins, which is a place for families to stay while their children are receiving treatment (at a much lower rate than a hotel), will not allow us to stay there until after we give birth (and that's only if they have space), so I'm in the process of looking for extended-stay hotels outside the city. My guess is that John Mark will help us get settled, then fly back to Huntsville and work, so he doesn't use up all of his vacation time before the real fun begins.

OK, back to our consults...our last visit was with a neonatologist, Dr. Woods, who was a tremendous help in our understanding of our little one's stay in the NICU. We also toured the NICU, and although there were no babies with O's or anything, we were able to see what the feeding tubes, IVs, and ventilators looked like. She said that obviously, we don't know for sure everything that will be done and in what order, but we should expect our child to have her initial surgeries within the first couple days of life. When she's born, they will take her away, cover up her O and bladder with a bag to prevent the area from drying out and from getting infected. They will make sure she's breathing and all that jazz (minor details, right?), then get her ready for surgery. The initial surgeries will probably involve 1. repairing the open spina bifida, if there is one, or other neurological issues, 2. fusing the bladder, 3. placing all her organs into her abdominal cavity if possible, 4. fusing the pelvic bones and placing her on traction. She will be highly sedated and will have to be intubated during the surgery and recovery period. After about a week or two, she will be transferred to the infant floor, where she will have a private room...this will help us b/c the NICU doesn't have much privacy (at all), and this way, one of us can spend the night with her. She will probably be in traction for weeks, which I already know will be one of the hardest things for me to deal with. I can't believe how much I took for granted all the time I spent holding and cuddling with Jack when he was a newborn. I guess we'll have to replace all that with lots of kisses (eew, nevermind, it'll be flu season, lol) and hand-holding.

So, as you might have guessed, we pretty much decided to go with Hopkins. When we arrive in October, we will meet the neurosurgeon and orthopedic surgeon, as well as see Dr. Crino for continual monitoring. My prayer is that she feels comfy enough in my womb to make it to 37 wks, so that we don't have to worry about transferring her from Huntsville or B'ham.

One of the most rewarding parts of our trip (even though I wasn't present, since I was in the middle of the u/s) was when Dr. Gearhart brought a 6 yr old boy and his mother up to meet John Mark and Jack. The boy has CE and fibular hemimelia, has gone through 26 surgeries and counting, but plays and acts like any other boy. He was in B'more to get a bladder placed in his tummy (he was born without one, I believe). He also got his belly button! (Babies with O's don't have them unless a surgeon artificially creates one.) He was born with a very small foot on the side that had the missing fibula, so they simply fit a prosthetic over the area - no amputation was necessary. Although I wasn't able to meet him, it brought infinite comfort to know that our child will get through this and will eventually be able to be a kid. She won't remember a thing about having her legs stuck up in the air for 8 weeks, and she will look at her colostomy bag and catheter and think nothing of it. It certainly beats having to find a bathroom while hiking in the mountains, right? :)

Birmingham Surgery Consults

2007-08-10T06:48:00.000-07:00

Well, earlier this week, I was blessed to see 3 surgeons at Children's in Birmingham. My sister-in-law took notes for John Mark (who had to work) while her family entertained Jack. It was one of the most overwhelming days of my life, and by the end, I was simply numb from all of the information that was thrown at me. We are discerning at this point whether to deliver and get treated in B'ham or travel up to Johns Hopkins in Baltimore to get treated by Dr. John Gearhart, a pediatric urologist who specializes in cloacal exstrophy . He sees about 5 to 6 new CE patients each year, while most urologists only see 1 every couple of years or more. I feel very confident that if we go there, we will receive the best treatment, but the logistics of it all is intimidating. Very often, CE babies arrive prematurely, so even if we schedule a C-section for 37 weeks, the chances of me delivering unexpectantly here are high. We are flying to B'more next week to have another u/s done with a perinatologist, Dr. Crino, who is very experienced at diagnosing CE. We are also meeting with Dr. Gearhart and a neonatologist who would be treating our child while in the NICU.

So, the gist of my meetings with the B'ham surgeons are described below:

Dr. Scott Doyle, the Chief of Pediatric Orthopedic Surgery, explained his roll in the initial treatment, which usually involves adjusting and realigning the pelvic bones and placing the child in traction. Later down the line, we will need to address her clubfeet and right leg. Her leg, which is missing the fibula, is measuring 11 weeks behind, so our options will probably include amputating part of her leg and fitting her with a prosthetic. They can also lengthen her leg. Considering the dozens of other surgeries that she will have to go through, I imagine that amputation is probably the best option for her. She would probably have it done within the first year or two of her life, when she starts learning how to walk (if she is in fact ambulatory and not paralyzed). The leg lengthening is much more drawn out and sounds really painful, so in my heart, I feel that amputation would be best for her. Obviously, it's too soon to tell. Her left clubfoot doesn't appear too severe, but since there is a high chance that these deformities are a result of nerve under-development, they may have difficulties treating it conventionally (via the Ponseti Method) w/o resorting to surgery.

Dr. Joseph, the pediatric urologist, was very awesome, and did a wonderful job explaining what was involved in CE surgeries. It is an extremely complicated birth defect b/c it involves so many organs, and there is much that we won't know until she is born. He discussed the possibility of kidney dysfunction (our child's kidneys look ok, thank God), and the surgery involving the bladder fusion and genitalia. There is a big chance that she will remain incontinent, but that's not something we will know until later down the line. There's also the issue of gender. Since we haven't gotten an amniocentesis done, we aren't sure whether we have a little daughter or son. It will definitely be more complicated if it is a boy, but again, we're just going to worry about that when the time comes. In regards to her bowels, it is almost always the case that these kids have inperforate anuses. Therefore, she will most likely have a colostomy for the rest of her life. Oh yeah, and I almost forgot about her omphalocele...it was 3.8cm last week, but all we can do is pray that it doesn't grow much bigger.

Dr. Oakes, the pediatric neurosurgeon, explained to us that oftentimes, the perinatologist cannot see an open spina bifida, so we should not rule that out. If she does have spina bifida, hydrocephalus is a very common result, which will require a shunt to be placed in her brain to drain the fluid. Normally, they will drain it into the abdomen, where there is a good bit of space to add extra tubing. This is necessary b/c as the baby grows and lengthens, there needs to be enough tubing to grow with it. But in our case, since her abdomen is kind of in shambles, they will need to drain it into the heart, which does not allow for extra tubing (smaller space). So, as she grows, they will need to cut her open and add extra as needed. This is a scary prospect, but I appreciate him preparing us, b/c I was not aware of how common hydrocephalus was for spina bifida patients.

Sorry...lots of information. There is a ton more, but I'm exhausted just thinking about it! Please keep our little one in your prayers. She has a long road ahead of her, as you can see. And please pray for us as we continue to discern where to get her treated. Hopefully after our trip to Hopkins, we will have a better idea of what to do.

Love,
Michele

26 weeks...another update

2007-08-01T14:04:00.001-07:00

Well, we just got back from B'ham, where we had another u/s done. Good news first: her heart and brain still look great. And it doesn't look like the liver is inside the omphalocele. Bad news: her condition may be way more complicated than we had originally thought. The perinatologist thinks she has cloacal exstrophy, which is a very rare congenital birth defect. We aren't even sure if it's a girl (hopefully it is, b/c things sound way more complicated if male genitalia are involved). The reasons the doctor suspects it's cloacal exstrophy is b/c her pelvic area is wider, as if during early development, that area didn't fuse together properly. It was even apparent to us on the u/s when we looked at the spinal column. As it reaches the sacrum, the parallel vertebrae curve outward. Omphaloceles are also a result of this condition. She cannot see the bladder, which she suspects is because it is split in two. We saw no opening through the skin, so spina bifida is not probable.

In regards to her extremities, the left foot doesn't look severely clubbed. The right foot was too hard to see, but she is banking on it being severe and irreparable, mainly b/c her fibula isn't present. (Yes, a slightly minor detail they failed to notice at the last u/s.) Without a fibula, obviously her Achilles tendon and whatever else can't function properly. Her right calf is also smaller than her left, so she assumes there is less muscle mass, as well. I can't exactly imagine what not having a fibula is like, but the likelihood of her having use of that leg seems minimal.

So, our priorities are to safely deliver her and have immediate surgery on her omphalocele (although, this may not be possible...her abdominal area is measuring small, so there may not be room initially for whatever organs need to be squeezed back in). In addition, they need to fuse the two halves of the bladder together (this also needs to be done to the uterus, clitoris, penis, or whatever else is involved). Our other major concern is making sure there is proper urine and bowel output...often with this condition, the rectum is closed, and there are issues with the nerves controlling the lower urinary tract. The clubfeet will definitely take a back burner until she is stable.

But on a brighter note, she looks beautiful. We saw a wonderful profile of her face, and she looked just like me. ;-) I feel her moving around constantly, and we are so anxious to finally meet her. We will most likely deliver in B'ham b/c they have the only pediatric urologist in the state. It will be nice to have a pediatric neurosurgeon available, too. I asked the perinatologist if there are any physicians in the U.S. who are more experienced with this type of diagnosis, but she thinks it is too rare for any one doctor to be considered an "expert".

So, please keep praying. I'm sorry if my post doesn't make a lot of sense. Hopefully, we'll have more concrete answers soon, although I'm guessing we won't know what's really going on until she is born.

Thanks again and take care,
Michele

24 weeks and counting...

2007-07-16T18:22:00.001-07:00

I just wanted to give a synopsis on my family before I started posting updates on our current situation. My husband, John Mark, and I have been married for a little over 2 years, and we have a beautiful little son, Jack, who is 13 months old. We are devout Roman Catholics and hope that we can raise our children to be holy and devout disciples of Christ. John Mark is an electrical engineer and is studying for his master's degree in network security. The ultimate computer nerd! :) I am a stay-at-home mom, and I love every minute of it (well, most of the time). We are both graduates of Franciscan University of Steubenville. I went to graduate school at Emory University to study molecular pharmacology, until I felt called to move to my hubby's town a few hours away to get married and raise a family.

Jack is the most wonderful little guy! As a baby, he was incredibly laid back and independent. At this point, he looks, walks, and acts like he's 2, so I constantly have to remind myself that he's barely a year old! He really is the most amazing blessing in our lives...I had no clue how fulfilling it would be to be a mother until he landed in my arms. I often find myself staring at him in wonder and awe while he plays, flips through his books, dances to music, or chases the cat while laughing hysterically. I'm sure most parents know what that's like.

When Jack was about 8 mos old, we found out we were expecting again! Our little girl, Bernadette, is due on November 7, 2007. We are currently 24 weeks pregnant. At around 18 weeks, I had a standard ultrasound (u/s) scheduled. My OB noticed a slight arrhythmia in her heart rate, which is actually relatively common, so I only freaked out a little bit. He scheduled me for another u/s 3 weeks later and had planned on referring me to a perinatologist to study the heart for any defects or malformations. I went to my next appointment a little nervous, but hopeful that her heart was strong and healthy. And I was right! However, my OB then noticed that she had a protrusion around her umbilical cord that he believed to be an omphalocele. I was pretty shaken up by this information, not really knowing anything about what this meant for our daughter. We ended up seeing the perinatologist in Birmingham to confirm the diagnosis. And we got even more hard news. Oftentimes, a baby with an omphalocele is found to have other birth defects. Thankfully, her heart, lungs, and brain appeared normal, so the chance of it being chromosomal was slim. But he discovered that her sacrum, or tail bone, was small and poorly formed. He also noticed that she had clubfeet. The omphalocele appeared to be moderate in size and included her intestines, part of her liver, and possibly her bladder. I guess only time will tell how severe her condition is and what can be done about it. We don't know if she will ever be able to walk...if there is nerve damage at the base of her spine, which is likely since she also developed clubfeet (her feet are controlled by sacral nerves), she may be paralyzed and/or have bowel and bladder issues. Needless to say, the wait is excruciating. Simply waiting until the next ultrasound feels like an eternity.

We are incredibly blessed to have so many faithful people praying for Bernadette. And we have undoubtedly received so much grace from those prayers. This is certainly the most difficult thing we have ever gone through...I have felt so many mixed feelings - from anger, to sadness, to fear, to joy that she has made it this far, to more fear...

So, keep praying! We will keep you posted on the upcoming ultrasounds, consults with surgeons, and any other news that we hear.

God Bless,
Michele, John Mark, Jack, and Bernadette