When I began writing this blog, I envisioned it as more of an instrument to share successes than the journal of intimate feelings that is has evolved into being. I hoped, and maybe even believed that by this point, my sweet daughter would be making all sorts of noticeable progress, and that you all would be amazed at her triumph over her autoimmune disease and autism. But life is not a fairytale, and despite thousands of dollars, and a whole lot of therapy and effort... Avery remains in her own world most of the time, and is still very much impaired, non-verbal, and held back in many ways by her diagnosis and disability.
In fact, if you would have asked me a week ago if Avery was on the verge of any big gains, I would have smiled and politely told you how much I love my child unconditionally, and how she has enabled me to understand how to happily live without expectations, but that, no... nothing was right around the corner. She was still a long way from making any giant leaps. I love when I am wrong.
All that being said, I am very proud to announce, that Avery is using the toilet. If that doesn't seem like any big deal to you, then you don't know Avery. Because, this is HUGE news. Avery cannot use a fork. She cannot pull her pants up or down. She cannot say a single word consistently. She cannot respond to most verbal commands. She cannot run, or jump, or skip, or drink from an open cup.... but she CAN and IS using the potty. It's not 100% yet, and she can't initiate that she needs to go. But miraculously, when I put that sweet little girl on the toilet... she knows just what to do! Elated, shocked, overjoyed, and astounded don't begin to describe how I feel right now. I should make up a new word.
At first I thought it was a fluke. One of our many therapists was here and Avery walked into the bathroom and touched the potty. I checked her diaper and she was dry but I knew she had had quite a bit to drink, so I said "maybe she needs to go potty." The therapist didn't miss a beat, and said, "let's put her on there." So we did and within a minute, Avery peed! I immediately teared up and started laughing. Shock. We alarmed Avery we cheered so loud, and promptly gave her a whole book of stickers. I hadn't even attempted this before as I saw NO signs that she was anywhere near ready. Again, I love when I am wrong. That day she went 4 times, and is doing better all the time. She is starting to go on the potty at school, and even went in public three times while we were out of town this weekend. Unbelievable.
I know I say it all the time, but I am so grateful that I have Avery to help me learn not to take things for granted. Every look, every interaction no matter how seemingly small or insignificant, every skill learned, every sound... I am appreciative. And not just for the gains Avery makes. Watching Kaylin blossom is so much sweeter, and knowing how it can all be lost makes me soak up every minute.
So finally, something isn't impossible. Every single day Avery gives me at least a moment where I see a glimmer of hope. That hope looks different today that it did two years ago when I prayed that by now she would be "on track." Today that hope lives in the moment. It exists in the present, and enables me to love and adore Avery for who she is right now and the amazing things she CAN do.
My heart still aches from time to time when I project long term, but I am so delighted to be able to have clarity. To see beauty in a glance, in the slightest noise, and in the softest tinkle.
I've been researching mastocytosis since 9/18/09 when my baby was diagnosed. Will was born on 2/9/09 and started getting spots on his head at 5 mths old. I keep reading about children with mastocytosis and autism. I would love to talk with you about your little girl and figure out what I need to do for Will now to prevent or help reduce the damage his mast cell reactions are doing to his brain/body. My email address is firstname.lastname@example.org.
That is so great for Avery!!!! Good Job Avery!!!!!
Bryan's KU friend in KC
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