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.
Wednesday, November 21, 2007
Friday, November 16, 2007
One month seems like forever
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.
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.
Sunday, November 11, 2007
One moment at a time...
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.
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.
Sunday, November 4, 2007
Donations
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!
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!
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