This month started off a little hard. We had nearly two weeks where I didn’t write anything new on the calendar. I was definitely feeling discouraged with our lack of progress. We had been working on some particular communication skills for several weeks and it was not connecting. Or if it did connect, she couldn’t express it.
My oldest daughter, Anne, loves to read and shared a true story of a doctor who had a daughter born with cerebral palsy. Specialists told him she would likely never walk, talk, or be independent. The girl grew up and eventually held a position in the White House. She did everything “late” according to a typically developing child, but she was eventually successful. Anne told me how in the book, the family never stopped praying for the little girl to keep learning.
It struck me that I had stopped praying for more Heidi miracles. She had made so much progress from her early days that my desperation for God’s help had waned. And my oldest daughter, without realizing it, encouraged me to keep praying for miracles.
And God answered. I do feel the need to state that just because we pray for something, in faith, does not mean that prayer will be answered in the way or time we hope for. But when it is, it is imperative to give the credit where it is due. Yes, we do therapy multiple times a week and we work what feels like all day long with teaching and caring for Heidi. But I truly believe God is answering my prayers for my daughter. I do get discouraged and lack faith. I have always related so strongly to the scripture where the father is begging Jesus to heal his child and when Jesus questions him the father immediately cries out, “Lord I believe, help my unbelief!” (Mark 9:24)
The latter half of this month was full of Heidi miracles. They started off small.
She gained confidence to go down the stairs easily.
She started putting shoes on (though never her own).
Leaving the house is always a struggle since Heidi will walk around in her sisters shoes and leave them in the most random places.
Heidi played in the sand. For a child with sensory aversions this was huge!
Not only did she walk on the sand, she picked some up and rubbed it on her legs. She also started eating the sand so I had to intervene.
Heidi is still the sweetest snuggler.
(Ruth loves to have Heidi sit on her belly and bounce her. We all think it’s hilarious since they’re nearly the same size now!)
Then all of a sudden she had a break through. She signed “all done” and said “duh” at the end of our meal Friday the 26 of June. You could see the intelligence in her eyes and that she truly understood. The next morning I was out for a bit and when I came back she went to her chair and wanted in. I started feeding her some yogurt and when I wasn’t fast enough she signed “more” and said “mah-mah”. She did this several times. When I started scraping the bottom of the container she signed “all done” and said “duh”. Since that day she has kept both those signs and words consistently, using them everyday!
She also pointed to the picture of herself in the swing to show me she wanted to swing. So even though I really needed to get to an appointment, you better believe I first pushed her on that swing!
She also is comprehending and responding appropriately! Zoey asked if Heidi wanted to tick-tock (be swung upside down) and she literally ran to Zoey to be picked up and signed and said “more” over and over. We had been playing outside one day and I asked Heidi if she was ready to go back inside and she went right to the door. I asked if she had a stinky diaper and she waved her hand in front of her face like I do when I say “pee-yew!”
She learned the sign “help me”. And “jump”. And is combining more + jump.
She even colored for the first time ever! I was so excited I texted her therapists!
Before I paint the rosiest image, please understand in the midst of the joy there is still so much that is hard.
Our family loves creek stomping more than anything in the summer. And Heidi just absolutely hates it. She cries, clings, and cries some more every time we go. It’s so hard to have the most joyous part of our summer be changed into something stressful (for me). I don’t want to deprive our other kids of their favorite activity but I also don’t want to push Heidi too much and cause extra anxiety in her life.
(My sister, Audrey, holding Heidi the last time we took her to a creek.)
In fact, we were planning to go today but Heidi seemed a bit “off” yesterday so we didn’t go. I knew it would be too much for her.
We learned that Heidi hates, hates, hates fireworks. She scream/cried so much at my sister’s house on the Fourth of July that when left. She scream/cried so much at my in-laws that one of the other girls took her inside. Fireworks are kind of a big deal in our family. We are learning that they are sensory overload for her, and we’re trying to navigate our joys with her terrors. We don’t have answers.
She still cries at nearly every dinner. She typically does well at breakfast and lunch. However, dinner is currently hard. We’ve started letting her either sit on my lap to eat or even just get down from the table to play. This is something I would never (or very very rarely) allow any of our children to do, but we are learning to parent her a little differently.
I hadn’t realized how effectively I have social distanced Heidi until she finally had to go to the doctor this past week. I haven’t taken her anywhere that masks are required and she had never seen me wear one. She was freaked out when a nurse wearing a mask took her temperature, then she hated that I had one on, then she fussed for the doctor with his mask. To make matters worse, I absolutely had to stop at a store with her. As soon as we walked in the door the guy who greeted us had a mask on and she started sobbing. She buried her head in my shoulder and turned her face away, only to see a customer with a mask on. It was quite the horrible trip and there was nothing I could do about it. I was never so glad to leave a store as I was that day.
Yet through it all, Heidi is so brave. She has come so far and truly has bonded, attached to her family, and trusts us to care for her.
She is truly, such a joy!
(Signing jump)
Happy 10 months home, Heidi! We love you!
