Written by: Rita’s Mom Lee Ann
Rita was a beautiful baby. We couldn’t have been happier. It was a wonderful time for my husband and me. I was able to bring her to work for a few months at the small district office that I worked at. Everyone loved to see her and hold her. She brightened everyone’s day. She rarely cried, didn’t babble much, and she also didn’t gain much weight. I had a skinny baby on my hands and it was worrisome. She was also very floppy and couldn’t sit by 6 months.
I had never heard of hypotonia when the doctor told me that is what she had. After over a year of visiting specialists and running through a battery of tests, we received an explanation for the cause in motor delay. Rita received the de novo GNAO1 gene mutation diagnosis when she was 2. We wanted to find out everything we could but there was essentially nothing. It was devastating for many months. I don’t know how I kept going to work and dealing with intense feelings of grief and fear of the unknown. It felt very isolating. No one knew what to say to me. I didn’t have answers to basic questions and it hurt my heart. I withdrew from friends and family and I still do because it still hurts. There are so many unknowns that we face with Rita that it can be overwhelming.
The only treatment option recommended to us was a variety of therapies and we took Rita to as many as we could. We adjusted to our new path forward with Rita and she set the pace. She made a lot of great progress but very slowly. I always thought of it like molasses. We packed up and moved to a nearby big city and I changed jobs so we could take her to more therapies. She now gets six hours a week plus whatever they work out in preschool (they tell us by minutes per month which I think is funny because it comes out to something like 15 minutes a week). I can’t imaging keeping track of the minutes but Rita did really well her first year of school and enjoyed going and riding the bus.
We were able to find occupational therapy that incorporated riding a horse. We had been thinking that this would be such a great thing for Rita to do but figured we’d have to be on a waiting list or some other barrier would prevent it (getting doctors orders and insurance companies on the same page is a tiring process that we are all too familiar with). One of Rita’s specialists had described equine therapy as the therapy of last resorts because it is used when no other therapies are working. Rita was working hard at everything she did but her progress was slow.
Rita started occupational/equine therapy in late summer of 2016 at age 3. We explained to her that she’d have to wear a helmet in order to ride the horse. I figured this would not go over well because Rita doesn’t like things placed on her head, plus the weight of a helmet would be difficult. So for her initial visit, we’re showing her around the farm, showing her the horses, and telling her about riding. Rita was pointing, pointing, pointing (she’s nonverbal) to a helmet on a picnic table. This kid was ready to ride!
One night, after about a month of riding, Rita did something I will never forget. I had her in my lap. She looked up at me, leaned in as best she could, lifted her arm and set it on my shoulder. I couldn’t believe it. I got a hug from Rita! We have always hugged Rita but this was the first time she was lifting her arm to give a hug. I was overjoyed. I grinned for days. I double checked with my husband to see if he had the same experience (he did). I can’t believe how something so small, so easily taken for granted, has changed everything. It was a good reminder for us to appreciate what Rita can do and not to worry about what she doesn’t do.
I know it seems small; an arm on a shoulder, but so many great things started coming together after that. Her overall strength and endurance has improved. She started getting into a sit, and being more mobile and has since been able to scoot on the floor to get around. She was a flower girl in a wedding and loved being on the dance floor! I’ve learned that Rita will do whatever she can do, on her own time, in her own way. Her hugs are more of an arm around the neck now. All of Rita’s therapies are important but it felt like the equine therapy breathed new energy into what Rita was doing. It continues to help her and we are thankful for it. **Hugs**