You see, there is this community that we belong to, for quite some time now, but officially let it sink in when Willow was diagnosed with hydrocephalus. That community is the special needs community. We have a few kids that have different needs in our home; but all of our kiddos at this time (because with Willow you never know when or if it could change), are high functioning within their own needs. I have one kid with Asperger's and Sensory issues, one diagnosed with a medical condition that comes with all kinds of different needs at different times, that being Willow and hydrocephalus. I also have another one with Sensory Processing Disorder, differently affected from the one mentioned above. The reason I struggle though is not really the typical day to day struggles with all these kiddo's; though that is there too. The bigger struggle I have is accepting my place, or role within that community. Most days, I don't think about our family as being a special needs family; mostly because our children are higher functioning and you wouldn't know it. I feel that I don't want to take a spot in the support group, or lecture for fear that someone may need that spot more than me because their kids have more needs then any of mine do. Or there is the thought that I can't possibly relate because of the fact that my kids are doing well, and of course the deeper fear of being judged.
Then there are the days where the light shines through. Days where I feel like I need to be joining those communities, because without sharing the stories of greatness, no one would have hope. When it comes to hydrocephalus, my goal is to raise awareness, it seems to be that there is more knowledge about the negatives that go along with this diagnosis than the positives. So much so, that even the medical community will tell women to abort the babies at the initial 19/20 week ultrasound, when diagnosis is most likely found. Now, when kids with hydrocephalus can have a chance to live active lives like Willow, why wouldn't I want to join the communities that we can easily get into with her diagnosis and share that information. Someone may need to hear it. As for the other kids, despite the high functioning, we too have challenges and they can wear on one person if there is no community to share it with. So, I am finding it a hard pill to swallow, but I going to look for the shining light, hold my head high and talk about all of my kids and their needs; because sometimes smaller needs can turn into big stressors.