I haven't blogged in a while, we've been busy and I haven't had any major news to report. We are working on getting Karsen more support, which requires a lot of paper work and a lot of me being a squeaky wheel. Recently, I looked back at old videos of Karsen where he was saying "mama" and "baby" clear as day. It was over three years ago and through all of the appointments, injuries, ER trips, IEP's, therapies, EEG's, well... life as a special needs mom, I forgot there was ever a point where he was talking. It's raising a bit of a red flag. He's loosing skills, he only says one single word. It's something that needs to be brought up to his neurologist, I want answers, I need answers. We are also working on getting his insurance to supply a full time device for at home so he can effectively communicate at all times. Typically, the district will supply one but only during school hours, which is only 2.5 hours a day. That's not OK with us. That's where my handy squeaking comes in. We are also trying to get to the bottom of why we were ever discharged from alta when Karsen was three. (Alta is a non profit company through the state that supplies services for children with disabilities age three and up) We haven't really needed them so I haven't pushed to find out, but now that we are needing more support, more services they are the ones that should be helping.
Karsen's birthday is tomorrow, tomorrow people! This is his last day as a three year old. It's different this year. It's different having Karsen turn four. It hurts a little. Don't get me wrong, it's exciting for him to have a birthday, to be growing and enjoying the typical birthday traditions. There's this other side of his birthday. There's always been this gap, the gap of where typical peers are at and where Karsen is at. Each year that gap gets a little bigger and a little bigger. It's become very clear that he is not on the same page as other four year olds. Typical birthday parties are not a thing I am able to do for Karsen, large groups can overwhelm him, he doesn't like people singing to him, he doesn't understand what a birthday is or that he is turning another year older. As much as I can hold it together and always be real with myself about Karsen's struggles, it doesn't make these things any less painful. And with each birthday I wonder, at what year will people no longer find him "cute". He will always be cute, sweet, and snuggly to me, but at what point will other people look at him in a total different way? I can already see people making the gross face when Karsen drools, I already see kids point. I've witnessed people taking their kids over to another play structure because Karsen was there, believe it or not. The world is not all butterflies and daisies. I'd love to stay in bubble of peace and acceptance but sadly not everyone is in that same place. In the same breath, we've been touched my many people in our lives. Some have been complete strangers, compelled to ask questions about Karsen giving me the opportunity to teach, to educate. We've made friends with people we would have otherwise never met. Friends I've made that are dealing with the same exact situation. Karsen has made me so strong; strong for my kids, for my marriage. I have more compassion than I have ever had before, I have more patience (although I could use a lot more), I'm confident in my decisions, I am real, I am me and I know I was given Karsen intentionally. God chose ME to raise him, to protect him, to love him. I was given such a beautiful gift. The gift to see life in a completely different light, the gift of a tiny human so fragile that I've had the privilege to watch grow into a beautifully perfect child.
There is so much to celebrate, so much to be thankful for. So here's to you, Karsen buddy. The child that has forever changed me, forever changed my family and has made my heart bigger than I ever thought possible. Love you more each day. Happy fourth birthday buddy! Enjoy your day, your day filled with giggles, tickles, snuggles and ice cream.
