It's a month where I can get on my soap box and talk about stuff about SB without feeling so guilty.
I always ask myself though- why do I feel guilty for sharing awareness the rest of the year? Why not bring awareness 365/24/7?
I try to keep it a bit tamer the rest of the year because well- our family is more than just Spina Bifida stuff. There is homeschooling, and getting ready to welcome another baby, there is day to day life that often does include therapies and doctors appointments but also includes trips to the library or the park.
But there's also the fact- that sometimes- I feel guilty for burdening others with it all. We all face difficulties with our children, our families, our health- why should I unload mine on the world?
The truth is- I think I've struggled more this past year with everything than I have in awhile.
They tell you when you are pregnant and get the diagnosis that you will go through the stages of grief again and again throughout your childs whole life. Through your whole life.
You can love your child with all that you are- and still grieve what could have been.
There have been nights (far and few between these days) where I woke up from a dream where Kasey was walking and running and playing and I was in tears. Partially because I woke up- and partially because I felt guilty for missing what Kasey isn't.
There are a lot of conflicting emotions. There is a lot of growing up and adapting opinions. Sometimes there is anger, frustration, anxiety (ok, lots of anxiety- I'm an anxious person- I can't help it). Sometimes- there are days where it is all so overwhelming you feel like you are going to drown.
Something I've had to tell myself and learn to be okay with is- sometimes I"m going to have a day where its all just so overwhelming, just too frustrating, and I let myself be a bit down. There was a day recently where we had a bad appointment with a new PCP. She dismissed our plans for helping Kasey with some particular issues within 5 minutes of meeting us.
"Oh, that would be useless for her"
I cried on the drive home. I fed the kids lunch and then hid in my room and cried some more. It's hard to pinpoint exactly why. I was angry, frustrated and wondering what to do.
I let myself go through all that- knowing that tomorrow is a new day. A new day to fight all the battles that need to be fought. I reminded myself that you know what? The opinion of a neuropsychologist who spent a lot of time observing Kasey and an actual specialist in the field we're going to for help- they know what they are doing. If they've spent the time studying the paperwork, studying Kasey, talking to me (and dealing with some of my tears)- what they say trumps what another professional said after only 5 minutes with us.
Spina Bifida is a "snowflake" condition as some like to say. No two kids with SB are alike. Two kids with the same affected level may have completely different issues, different abilities, etc.
Upside to this- is there are times when it comforts me because it explains why doctors are sometimes a bit useless when it comes to knowing how to help Kasey. No 2 cases are the same- so you can't throw a by-the-book diagnosis at a kid and expect it to stick perfectly.
Downside is- even in the SB community sometimes it feels like not everyone gets it. However, I've been lucky to find plenty that do and I am blessed beyond measure.
This year- my SB awareness posts tried to focus on more than just the physical stuff that affects bladder, bowels, the brain, etc. I tried to touch on topics that really embody other things we deal with.
I don't know if I helped anyone to understand- but I know it made me feel like I did SOMETHING. Something to make the world a slightly more understanding place for Kasey.
So - I think I"m going to be sharing a lot more in the blog- both about our day to day stuff- and the things that are really impacting us beyond that.
Hopefully- I don't bore anyone to tears along the way!
The truth is- despite all the days that are hard or the battles that seem to never be won- I wouldn't change a thing. I wouldn't use a magic wand and make Kasey "typical." The world needs her. I need her. She's a beautiful soul. If the world was full of "typical" people- who would teach us the important things in life? The beauty of everything around us?
Life doesn't have to be lived standing up on two legs for it to be absolutely amazing<3