My little music man wanted to play his guitar and his drum. He was excited to sing “old MacDonald had a cow”. He likes to do the animal noises. I was showing him how to hold the little ukulele with his hands. I can’t even play a note, but I keep hoping that he will magically be able to figure it out from the instructions I am giving him. He has such a beautiful little voice and perfect pitch when he is using his voice and not trying to mimic a character from a video. I’m always amazed at his voice. When he was a baby I wanted him to understand the importance of music and the connection that it gives us to our soul. I would hold one of his hands on my throat and the other one to my mouth or heart. I hoped he would be able to hear my love shine through and the connection would soothe him, even if my singing was off-key. Today felt like a mountain I couldn’t climb and I tumbled down the other side. Regression is so hard to watch and I feel like I have no control over how to help him. He misses his life, who doesn’t, but he can’t even begin to understand why we aren’t going places. What he must be feeling inside overwhelms me. I try to calm him and help him understand I’m here for him, but it’s not the same as going out into the world and living. I used to be afraid to walk out my door because it was so hard on Owen when we would go anywhere. The meltdowns were huge and my heart broke in a million pieces every time we would walk out our door. It was emotional, it was demanding of my whole body, and now here we are again, for different reasons, but not walking out our door. It makes me sad for all the progress we had up to this point that now we can’t go when we need to go. All I can do is pray for the tomorrows yet to come. I have to protect my baby even if it feels like we are backtracking. I saw progress with his words today even though I felt like we were losing ground in other ways. I cling to that, holding on for dear life to that moment when I heard him say, “head shoulders knees and toes” instead of using the word “mes” for knees like he generally does. Life does not always go according to plan, but know this is one moment in time and keep pushing forward. Smiles to all and donut daze!
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