I'm Still Not Ready
I've been asked several times now if I could speak about Hudsyn's story to a large group of people. Sometimes a class of nurses, sometimes a church congregation...I've even been asked multiple times to write a book about our journey. I started to document her journey from the moment I could pick up a pen and paper in the NICU. But it was tough. In fact, most of the notes I jotted down were pretty fragmented and blurry (hello drugs). And then came the creation of this blog. It was an easy way for me to keep all of her "fans" updated, but also give me a way to summarize her progress without going into too much detail.
We have a very powerful message of Hope, Faith, Love and Healing. And, I get that...I really do. But to actually write it all down, from beginning to end presents two unique problems. The first, of course, is that I have to relive it. When I write, I'm extremely introverted in my thinking. My environment has to be quiet and because this is such a personal experience, it comes completely from within. That part of me during that time is still very fragile. I'm not really sure if I've EVER thought about it as one timeline...I've only written and, thus, experienced it in fragmented pieces.
The second challenge is that I don't feel like the story truly has an end. Hudsyn's journey has only begun. By writing a book, there has to be an ending somewhere and I just can't visualize it quite yet. Maybe I'm waiting for the sign from her that it's time. That she can communicate with us more than crying. That she can walk, or even move her arms in a controlled manner.
All I know is that someday I want to tell her story in full. Slowly, I've been making progress on this by writing notes, dictating my thoughts verbally while walking on my treadmill and allowing my mind to wander back there when I find myself particularly strong on certain days. I've been careful not to give myself any deadlines. It's too much pressure because generally I'm an overachiever and I'd beat myself up considerably more if I fell anywhere short of the expected, made-up date.
It's true, we have a "new normal." One that we never in a million years expected to be living. I have no one readily close to me who is experiencing parenting quite like we are. Sometimes that feels super lonely. But most times I'm grateful...because this experience has opened up an entire new world of friends, supporters and teachers that we would've never had if Hudsyn would've been born the "expected" way.
And that group is really the passion behind why I want to keep working toward writing H's story. There are thousands of people, just like us, who tomorrow are going to have a baby in a way they hadn't planned. And they, too, will go through trauma, experience absolute fear, feel loss and live through a very lengthy grieving process.
They will walk into restaurants with their special needs baby and feel the stares of those who know that "there's something not quite right" with their little one. They'll endure the comments from people in the grocery store who offer empathetic looks and make remarks like, "Oh, somebody's tired," because their child isn't very mobile but is still too young to be in a wheelchair. And they will reconnect with family and friends after that baby is born and realize that their conversations are different...that instead of talking about conquests at work or the latest social gossip, the entire table will want to ask questions about their experience, their daily life and the latest doctor's appointment. It will all center around this new, very special child.
While all of this is okay, it can be extremely difficult. And I want those new parents to know that they're not alone. That there is hope on the other side of this...and that it doesn't have to be their only story. That they should have Faith and to trust in God. (Hmm, maybe I've already started to write that ending I was unsure about.) :)
In any case, I'll get there...someday.