Burdens

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

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

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.