I haven't updated in awhile. Mostly because I needed to take a much needed break from analyzing everything Maddy was doing or not doing. I just needed her to be Maddy and me to be Mommy and that was it. It's a luxury that very few families get when they live in the spectrum world.
I have much to tell about our recent trip to Walt Disney World and what an amazing time we had and I will. I promise you all a post about that. But not right now.
In the midst of being parents and raising typical kids, we lost sight of few of the legislative things that were happening in our state. Last night we had a brutal wake up call to just how terribly off course things were going. We may be able to take a break from analyzing our daughter but the greater responsibility of helping others can not be shoved aside.
Yet I do not feel up to writing an honestly very angry entry about how things are going in legislation.
What I do want to say is how thankful I am for every small moment.
Last night I was furious and frustrated about legislation and laws and bills and vouchers and all that garbage. I have never been one for politics and now after following them, I dislike them even more. I am not a debater. I don't like to argue for the sake of arguing. I avoid confrontations. I don't like any of it. Except when my kids are involved...then Mama BearKatt comes out.
Eventually I decided it would be best for me to just go to bed. I did all I could do. Emailed and social media'd all of the appropriate people. Time to just call it a night and trust that God was working over all of it. So in my night time routine, I walked into the girl's room to check on them before going off to bed. My girls all sleep in the same room - three little girls in a little room. Not because we don't have room for them to have their own room but because they CHOSE to be close to each other. It's pretty darn sweet.
I started with Eva in her daybed, covers askew and one leg hanging over the end like usual. I covered her back up, shoved her leg back onto the bed and kissed her forehead. Maelle on the top bunk with no covers but the one baby blanket over her face. That girl has slept that way her whole life. Super hot but has to cover her face. I remember how terrified I would be when she was a baby and she would shove that blanket over her face and be snoring away. And then Maddy girl on the bottom bunk in a tangle of at least 4 different blankets. She always wakes when I untangle her. Last night was no exception.
Her eyes fluttered and then opened. She looked at me and instant recognition rang to them and her mouth quickly formed a very huge and satisfied smile. Her eyes shined as she whispered, "Nigh-Night Mommy."
"Nigh-Night Maddy." I whispered back with a matching smile.
"Sweet dreams," she said, lazily.
"Sweet dreams to you too, I love you Maddy."
"I love you Mommy. I'll see you in the morning." and she nestled in with a happy smile while her eyes closed again.
My heart melted. It was exactly what I needed at that moment. Reassurance.
Today she practiced piano with her wonderful teacher and again I saw another moment of reassurance. Here she was learning to use each finger independently with music involved. It is a wonderful thing for OT. It challenges her finger strength and forces her brain to make each finger work independently yet together. She has the mental capability to do it...she already knows all the notes when you ask her. It's a matter of teaching her fingers to do it.
Would I have imagined 3 years ago that we'd be teaching Maddy how to play piano??? No. And each time her little fingers work hard at pushing those keys, my heart melts.
So even if the bigger picture isn't actually what I want it to look like, (the bigger picture being that MV has gone on to help other families get the treatment they need) at least we know and can be assured that what we did was worth it. That it works. That because of all that time and effort, we changed a life. I need to remember this when the bigger picture has so many setbacks. We didn't help Maddy overnight....we can't help everyone else overnight either.
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