Almost 4 years ago I lost my daughter. My beautiful and amazing, loved and wanted daughter. Congenital Diaphragmatic Hernia and Pulmonary Hypertension stole her from me. 4 years ago, I honestly had no idea either of those two things existed. How I wish they didn't. They stole so much from me.
Grace was the only of my 6 children to be born with anything abnormal. Grace was the only one who had CDH. Grace is the only of my children to have lost her life to CDH and PPHN. And yet, CDH has stolen from all of my children and from myself and my husband.
The day Grace was born was the day CDH began stealing. Her birthday is this month, 4 years, and it hasn't stopped yet. It honestly never will. But I pray it will one day be easier.
My 3 sons were 7,4, and 2 when Grace was born. She lived for 4 months and 13 days and CDH stole those 4 months and 13 days with my sons from me. I missed out on so so much with them during that time. I will never forget how much I missed them, aching to be with them and yet, unable to be able to leave her side. When I would leave her, I ached to be with her. There was no satisfaction. Either I missed them terribly or I missed her terribly, no matter who I chose, I yearned for the one I wasn't with. My sons lost 4.5 months of their mom, and of their dad. They went from having two parents always around, babysitters were rare and mom was always home with them during the day to always having a baby sitter and never seeing mom and dad at the same time. Life became so different.
Of course once Grace died, dad went back to work and mom just wasn't the same. The mom who used to play, who used to bake and let them help, who used to laugh and take them on adventures and playdates became the mom who just sat and cried or yelled. The mom who was drowning in grief but didn't want anyone to know that she wasn't ok so she pretended that she was.
Suddenly we are 4 years out, and the 7 year old who used to snuggle up next to me is now turning 11 this week and I don't know where he came from. The 4 year old is 8 and the 2 year old is 6 and can read.. Sometimes they will mention something from the last 4 years and I dont remember what they are talking about, it is all just such a fog and that makes me so so sad. my oldest sons childhood is more than half over and I can't recall so much of the last 4 years of it, when he transitioned from a little boy to a pre teen. CDH stole his sister. His sister that he prayed for every single night. The night she died and I had to tell him, I watched him shatter. I told my son that his sister went to heaven and he's never been the same. His innocence forever gone.
I had hoped the other two would be too young. Too young for what? To feel the loss? It turns out they felt it just as proufoundly as the one who understood immediately. 4 year later and we are just realizing the effects of this tragedy and realizing that time doesnt heal all wounds, that sometimes the pain is still so present but so well hidden and you have to actually DO something to work through it. Children aren't just resilient and can't just bounce back all the time. My heart is absolutely broken watching one of my children struggle as much as he is right now. A struggle that stems from three simple letters and all of the damage that they have done to my world. To hear an 8 year old tell someone through tears " I just want her back" about his baby sister is absolutely heart wrenching. I'd give anything to take his hurt.
We didn't just fight through 4.5 months and then plan and attend our daughters funeral and then go back to life as normal except for being sad here and there. What happened to us had a sort of ripple effect. Like a stone thrown into the water, it happened and then it just continued to spread and affect our lives further and further out, until hopefully the waters become calm again.
I won't give up, I will fight for that calm. I will fight and move forward until finally my family is no longer just staying afloat, searching for the calm. I will fight because Grace fought, she never gave up because things were just too hard and just to tiring for her. She didn't stop just because she couldn't find the hope to carry through. I won't stop either. My sons deserve total and complete happiness.
