It's been a really long winter... It's taken us the entire winter to get Madilyn back to a relatively stable place after attempting school again last fall. I actually took her to the grocery store the other day to get a few things and it went really well and she was very proud of herself. I never imagined that running to the grocery store would bring me to tears.. at least this time they were happy ones.
We never ever thought this is what life would be like raising Madilyn. In some ways it is soooo much better than we ever expected and in other ways it's soooo much harder than anyone could ever comprehend. I always thought it would just get easier and easier as she got older and let me be the first to confirm that thought is a totally not even close to true.
On the good side she learned how to walk on her own last fall/early winter and is cruising everywhere in the house on foot now. That also means she's cleaning off tables and counters and she has this incredibly strange obsession with the window bench in our kitchen. It's not allowed to have anything on it. When she gets beyond the gate the first thing she does is throw everything off that bench. Then she moves on to the shoe carpet and if the door is open she throws everything down the back porch steps, and she's not happy until absolutely everything she can reach is thrown out there. Then it's onto the dog food dish... ugh, who needs a sensory bin when you've got a dish full of dog food?
I'm currently hiding in my dining room (on the other side of another gate) and she knows I'm in here and is mad. She stands at the gate and gags herself until she vomits in hopes of getting her way. The reality of it is I'm not even sure what she really wants. I never thought that in my 40's I'd be playing a never ending game of can you guess what I want? or how I feel? or what's wrong? Imagine spending you life with the never ending 1-3 year old.... right? You are currently thinking you'd probably go insane. Some days it feels like that is a distinct possibility and other days are wonderful. Cognitively we believe she understands way more than she is able to communicate. You can see the look of recognition when you tell her something but then you also get the absolute frustration, aggressiveness, anger and sometimes tears of sadness from both of us when I can't figure out what she wants or she can't figure out how to make me understand.
We are currently working on getting a distinct yes or no answer from her using green (yes) and red (no) bracelets. Every new skill takes an eternity to master for us so it's a constant work in progress but the hope is that it will at least give her those 2 definitive choices and eliminate a little bit of confusion and hopefully a few meltdowns.
We are hopeful that we can start getting her back into some "normal" little routines like being able to run to the grocery store again or maybe even the dreaded Walmart. She is back to doing very well at her outpatient therapies so now it's time to start trying to add back some everyday life things. Our hopes are that over the summer we'll get back to where we were before attempting to start school last fall. We are medical homebound for school next year so we'll hopefully be adding the teacher into our home once per week and eventually therapists. We have to go at her pace though because we can't spend every winter attempting to undo the medical damage and regression that we have had the past two years.
I won't lie.. I've always longed for her to be able to go to school and for it to go very well. The fact that it does not is really quite the grieving process to go through. We typically live in the moment with Madilyn, it's the only way to maintain our heads above water... but school was a huge dream for me and it's been shattered and the grieving process has been long and very difficult. As always though, in the end we adjust our thinking, reassess our dreams and be thankful for how far we've come and what we have instead of what we don't.
It's getting nice again and I'd love to say we've got some new little pink shoes to show off but we don't ... not yet (truth is she's still wearing the same shoes from 3 years ago)... but soon because after all.... life is all about the little pink shoes.
