I’ve met several families who have had preemies with similarities to Owen’s course. But I’ve never heard of a story exactly like his. That’s not because Owen is some sort of special case, it’s because EVERY preemie is a special case.
There are no two preemies exactly alike. The course of Ailyn does not predict Virginia or Charlie’s. The course of Jack does not predict Owen’s or V’s or Boy Boo’s or Tucker H’s. Not even twins, like Destroy & Search or T & K, who have the same parents and same length of time in the womb have the same course.
The same is also true for any type of special needs. Kerry’s Cerebral Palsy is likely different from Max’s Cerebral Palsy. Girl Boo’s undiagnosed special needs don’t look like Tucker C’s who has a kind of sort, maybe, not quite exactly, but a lot like diagnosis.
I know you know that every child – special or typical needs – has his/her own course. It’s not always easy for us as parents, but as a whole, I feel like this community really does a great job of giving our kids permission to end up in different places.
Where I would argue we don’t give that same permission is with ourselves.
It’s an interesting perspective being a blogger who is really open with her emotions through all of this. After two and a half years, our family is finally settling into some sort of groove. We are forever changed, but we are getting to a place that is more about moving forward and hope and joy and less about living in constant fear and simply thinking it’s a good day when all the meds and feedings were on time all while trying to figure why/how could this happen?.
Some families are wondering what took us so long to get here. Others are wondering how we could be here so soon. Just like our kids’ course and outcomes differ, the parent course and outcomes differ. And it doesn’t have anything to do with the course of the child. My husband, Kyle, and I have completely different perspectives on much of what happened. We have the same two preemie children and each experience effected each of us differently.
Just because I went back and toured the NICU, doesn’t mean that I think everyone should. In fact, my husband would probably rather do just about anything than to step foot beyond those doors again. Just because I choose to believe that there wasn’t a reason for any of this happening and that it’s just what happened. Doesn’t mean I don’t respect people who do feel this was part of God’s plan. Just because writing a blog that details every negative and positive feeling I have had on this journey works for me, doesn’t mean it’ll work for everyone…notice, I don’t talk much about Kyle on this blog? He knows it’s what I need and he respects that. I know he wants to keep his path private and I respect that. Same kids, same courses. Different outcomes. Both outcomes are okay.
Maybe I’m over thinking it, but I’ve received a few comments and private messages lately that made me think that my sharing where I am, made others feel bad about where they are. No one has come across as angry at me for sharing what I’ve felt, but it has seemed a few times, they have been angry at themselves for not being in the same place that I am. If you fall into that camp; I am sorry. It is never my intention to make someone feel bad (unless you gave me crap about being asked to wash your hands in my home). I do not think that my thoughts and experiences represent everyone. I’m only sharing because 1) I have this inner need to share this experience. I know no other way to try to make sense of it all 2) I still find the time to share because if every once in a while it makes other people feel better about their own experience, it’s worth the effort.
Most of the readers of this blog are preemie or special needs families. We are all brought together by what we have in common – beautiful kids that didn’t have the expected course. I love having this group for that support and also want to remind everyone that your perspective is not the same as mine, or each others on every point. That’s okay. We can still join together to remember those who had much too short of courses, encourage those still on an unexpected course and support each other as we heal.
Just like our kids,we parents have our own course too.
PS – check out all the links to see more inspiring preemie and special needs stories.