Assimilating Maddie

Figuring out how to include Madelyn in our family, even though she is not physically with us, is a part of this grieving process. I’ve read that several times. I’ve heard it from all of my doctors and confidants. She has a place in our family and finding out where and what that is will help us to think of her without our hearts breaking. We will one day be able to embrace all of the moments where her life was pure joy and not be so overwhelmed by the hurt. At least that is the plan even if it is not where we are now.

I think that I’ve felt that I need to separate Maddie from her CDH in order to include her in our lives going forward. I often said during my pregnancy that I wasn’t going to let CDH define her life. That we would walk the CDH road and then, hopefully, get to a point where we could put it aside and just let her define herself. But I’m realizing that she was here such a short time and that her illness was such a big part of her life, that there is no separating the two. To mourn her is to mourn our brief home in the ICN. Our short friendships with the medical staff. Taking care of her involved some diaper changing and holding, but also involved hours of research, testing and immersing ourselves into a medical culture that would help us make the best decisions for her. We are slowly having to let all of that go.

Madelyn had her own life, her own spirit, her own body, all of which were, and will forever be defined by CDH - at least on some level. We know she was feisty and she was a fighter by all of the things she was able to overcome and pull through. We know she was alert and curious. We know she wanted to be loved and touched and demanded to be the center of attention. She was able to show us all of this through her illness, because of CDH, not in spite of it.

So I have to learn to process that. To really accept that there will be few times where I can remember Maddie and not remember the tubes, wires, sounds and smells of the hospital and that is ok. That it is ok for us to remember her exactly as she was and how she lived and not have to focus on the hard parts. If it were me, I wouldn’t want my last heartbreaking moments to stand out more then all of the wonderful, cherish-able moments.

I’m still struggling to figure out every day things. Yesterday I sent a birthday card and decided to include Madelyn in the signature block. I don’t know if I’ll always do that, but it felt right just then. I’m also rehearsing my answer for the first time someone ask me how many children I have or if someone asks me how my baby is doing. Although I don’t have the perfect words yet, I have a few scenarios and each time I run through them, the panic subsides a little bit.

i’m also writing for myself now. Well, technically, I’m writing to Maddie, for Maddie, about Maddie. And although I don’t edit myself much when I blog, i find that my tone is different when I write to her. Both methods are therapeutic, but my letters to Maddie are much more impulsive and abstract, disjointed. Although we still feel the love and support from everyone, the overwhelming display of it stopped about 10 days ago (3 weeks after she died). Incidentally, this is also when my milk dried up and when I started to feel like other people where silently begging me to stop talking about her and grieving so publicly. This last part may or may not be true, but my private journal has given me a place to expend all of that emotional energy without having to think about how it’s being perceived.

This morning was my postpartum check up with my regular OB. Without using as many words as he did, he was able to confirm what I already knew in my heart - we will be ready for more children physically before we are ready emotionally. He does not feel that we will need to manage my subsequent pregnancies as if they are high risks, although we will do more testing then a normal pregnancy just to reassure us all. He also doesn’t feel the need to put a limit on how many more c-sections i can have. We aren’t sure about how many more, if any, biologically kids we will actually have. But knowing that we aren’t limited, medically speaking, is reassuring in and of itself.

So I image when we feel like we aren’t just surviving any more, when the grief isn’t so big it takes up our whole world, when we can remember Maddie without falling apart and when we are strong enough to face another pregnancy and all of the associated risks of any pregnancy, we’ll start talking about having more kids. I don’t know if that will be 6 months or 6 years, but probably washing a sink full of dishes without melting down is a milestone that i will have to reach first.

This morning I sent off paper work requesting all of our level 2 ultrasounds, all of Maddie’s chest x-rays and her complete medical record. I also sent off paperwork to the milk bank authorizing them to donate all of the milk i pumped for Maddie to an ICN. Both of these things help me to validate her life. The records are something tangible and official I can hold. I can pour over and remember every day of her life. The milk proves to me that she had a life worth living and worth fighting for, and now, another baby will benefit from her life. Will grow and thrive.