Life after NICU and losing my baby girl

8 Painful months

on 03/13/2012

And it still kills me. I was talking to a customer the other day about you. He mentioned that he had to make food for a funeral. A couple was about to bury their child, who had died in an accident. I had to talk to him more. Some reason, it just felt…right. I’ve talked to him many times before. I just never told him about what had happened. For some reason, I was compelled to say something.

I had to tell him to send my condolences to the parents, as I knew how painful it is to lose a child (no matter their age, its just WRONG to bury your child), and that I would send up prayers for them (which I fall asleep nightly thinking about all the people in my situation, those I know and those I don’t). He gave me a very strange look and asked me if I really did know. I told him that I did, we had buried our daughter soon after birth this past summer, that’s why I was gone (literally, this guy comes in DAILY, at least once a day. We all knew him WELL). He asked how old she was and then started a heartbreaking tale of how one of his children very nearly died of spinal menangitis. I wanted SO BADLY to reach out and touch his arm or give him a hug. Not just for him and not just for me. Here was a man that had lived a harrowing experience in which he almost lost his baby. He KNEW. Yea, his baby boy had lived, but he KNEW the pain of the unknown and all the medical crap that surrounds a VERY, gravely ill baby. This was a man I could trust to know a part of my pain. Sadly, I wasn’t able to reach out to him and give him my touch (comfort to him or me, I don’t know) because another customer came in and I of course had to move on and take care of that person. But I think next time I’ll have to give him that comforting touch. Its something that you will never know unless you have a child that is very ill, no matter if they live or not. Dare I say, its almost like a secret society. We don’t really talk about it because it makes people uneasy around us and treat us like we are breakable and can’t be talked to about ANYTHING. But when we get together and get to talk about our children, we connect in a deep way that it doesn’t matter how well we know each other, we are together in a circle and able to lean on each other. I feel I can do the same with the NICU parents who have gotten to bring home their precious angels (Hi, Becca, Cyndy, Tanya, and others!). They know what I mean when I talk about the relief and fear when a dr comes in to the family gathering area. Relief that whatever is going on is over, but fear for what happened. Are the smiling? Are they on the verge of tears? Are they excited or are they scared? Are they carrying papers to sign or read, or coming empty handed? Any parent who has had a child in the hospital (and I mean more than just when they were born, I’m talking about an extended stay!) knows these emotions. Its an even more secret society when your child doesn’t make it. This is a society in which you’ve lost a child (no matter their age) and have wondered “Why did I outlive my child? Why didn’t I pass so that my child could live on, have a life, have children, grow old, everything? Why do I have to have my heart ripped out and put in a box? Why can’t I ever get to hold them again?”. Its really isolating. We can’t talk about our passed on children as easily as those with all their children living because it makes the person we are talking to start to pity us or start treating us like there is something really wrong with us.

I found this to be especially true this past weekend. We have been looking at houses to buy. We have one that we really like, but during our last walk through, Scott, Tammie, and Adam were downstairs checking out the basement while Anthony and I were up in the little boys’ room with the Realtor (Amanda), playing with their megablocks and legos. I thought it was (for some reason) a time I was comfortable bringing up Bailey. We had mentioned her name before, but she never asked and we never said. Anthony was trying to carry the blocks out of the room (which I refused to allow, those aren’t our toys, afterall) and I happened to say “What would I do if your sister was here? You two would have me driving myself up this wall and down that one!”. This piqued Amanda’s ear and she asked what the situation was. I gave her the super condensed version (“Our daughter, Bailey, was born with a very rare lung defect and died at 20 days old. That was this past summer”) and got the usual “I’m so sorry”. There was little else said. I felt that with someone we were going to be working so closely with during this homebuying adventure (and adventure is sure is!!!), it was time for her to know exactly what she was going to be getting into. I have no idea what she thinks of us now, but at least she knows the whole deal.

On the morning that would mark the 8th month since giving birth to that precious little girl, its hitting hard. Rather than thinking about party ideas, places, decorations, even more baby proofing, packing away more pink things for the next baby, and encouraging her ever growing curiosity (just like her brother), I’m thinking about the short 20 days I got with her. All the time I lost. All the stuff that has happened since she came and blessed our lives and left us wanting more of her amazing spirit, beauty, and strength. Friendships gained and lost. People come and gone. Changes made and things that haven’t changed at all. New things that have come along and wishes that she was there. I can’t help but think about where I was last year. We knew that something was wrong with her. We knew that everything was going to be VERY different this time around. We had hard choices to make, plans to put in place, and lots of dr visits coming our way. Looking back, I wish I hadn’t wished it along so quickly. I wish I had spent more time rubbing my belly and talking to her, telling her what an amazing beauty she was. I wish I would have spent more time embracing the changes in my body that were making her growing body stronger. I wish I hadn’t griped so much over the body pains. I wish I had tried to enjoy it more. This all changes with the next baby (God willing). I’ll stop complaining, and start loving. Stop wishing time away and start enjoying every little movement and kick (even the pains!). Stop complaining about the stretch marks and start calling them badges of honor. Stop hiding the marks that my children have left and embrace the beauty that pregnancy beholds. I pray I get to enjoy that feeling again and again. I pray that I’m not done having children. I’d love to have at least 2 more children. I don’t want Anthony to think that he doesn’t get any siblings that he can’t play with.

But, here’s to praying for the future. All the things that Bailey has done to change the world. More awareness. More material to help with answers.  More love and compassion for those with children and angel children. I’ve moved out of one limbo (well, I think I have anyway) and now its time to move out of the other limbo. I just wish I had more than one of my babies to bring into the new home (when it happens) and to allow to grow and play.

Baby girl, we love you so much. Papa and I have had many moments where this whole process of buying a house and moving from one step to another without you and break down. Give us the strength to pick up and carry on. Keep watching out for your wild older brother. He’s being such a pill lately, but sometimes I have to wonder if some moments aren’t you coming through to let us know that all really is ok. We love and miss you. I hope you enjoy the snowman someone made for you and get to play with it before it melts completely. Give the people who made it for you a sign of your and our thanks.
Sending all our love and prayers to you!

To everyone else still hanging in and putting up with all of this, thanks. It means so much to know that there are people out there who care enough to look past the emotions and will even sit down and cry with us. We also thank you for hanging around. It can’t be easy (we know it isn’t from our angle!) and if you have hung in, that means you are a true friend and really love us. Thanks.

Here’s to another month gone. The next 20 days will probably proceed like usual. Maybe one day I’ll speak on that more.


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