Sophie Update

I mentioned on Friday that Sophie was in the hospital last week. I wanted to share a little update and a few thoughts about it all. I hope you’ll forgive the pause in our regularly scheduled recipe posts.

As part of autism, Sophie often has some odd or quirky behaviors. Sometimes it’s talking only in a high-pitched voice. Sometimes, it’s avoiding eye contact, sometimes it’s repeating actions or phrases or games in exactly the same way. Two weeks ago, Sophie immediately dropped one behavior and adopted two others. They were repetitive and strange. Involuntary. We watched and waited over a few days, but things were progressing and concerning. On the worst day, our ABA therapist recorded how many movements she made, and there were 714 in two hours. It was enough for me to call the pediatrician, who sent us immediately to the children’s hospital ER to check for seizure activity.

We spent 8 hours in the hospital, shuffling from one test to another. We spoke with specialists, ran tests and exams, and took samples. We still don’t really know anything. We’ll speak to the neurologist this week and should get the results of several of the tests back soon. It could be a short road, it could be a long road. Mostly, we’re really, REALLY looking forward to answers.

It was awful and scary and unexpected. I feel like I haven’t slept in weeks. But, it was also another chance to witness miracles.

1. Being told to go the emergency room with a child has happened to me twice. Both times, it’s sent such panic into my heart I think it’s going to burst out of my chest. Sophie was calm and pleasant on the drive over. I prayed the entire drive to be calm for her. When we got to the hospital, we had to park a 5 minute walk away from the ER entrance (if there was EVER a time for valet parking…), and I carried her in the 100-degree heat to the door. As I walked, I felt peace and calm washing over me from head to toe. I knew it was going to be scary and horrible, but I felt peace. Even when the neurologist said there was a 50% chance of it being a certain tumor (that test came back negative, thank goodness), my brain felt terrified, but my body was calm. It was a little moment of divine help, and it got me through an extremely difficult 8 hours.

2. We were sent to a children’s hospital. The staff was all well-acquainted with working with children. There were TVs with favorite shows playing everywhere. There were playthings built into the walls and pictures on the ceilings above the exam tables. There were stickers, and decorated bandaids, and even free toys for after a blood draw. They spoke in soft or silly voices. It was a safe place.

3. Sophie was calm. I cannot begin to tell you what a miracle this was by itself. Last year, during the many tests for diagnosing autism, Sophie was NOT calm. There were lots of screaming, flailing, fighting tantrums that broke my heart to watch and which I was powerless to stop. This visit was almost unnaturally easy. I simply explained to Sophie everything we were doing, and somehow she understood. She understood things I don’t think she would have normally comprehended, but she DID. It was a miracle.

4. Have you ever tried collecting a urine sample from a toddler who isn’t potty trained? When I tried explaining what I needed Sophie to do, she looked right in my eyes and calmly, clearly said “Yes, mama” and did it. Successfully. The first time.

5. When she had to lie on a table for a 20-minute ultrasound, she hardly moved. She answered questions, we talked about what we were doing (“we’re going to put some funny jelly on your tummy and look inside”), she sang the Peanut Butter and Jelly song (“pea-yut, pea-yut buwwer… an jawwy”), and she was calm and cooperative, rolling onto her side, looking up at the ceiling, etc.

6. She didn’t shed a single tear during the blood draw. Our last blood draw involved a full body hold, three attempts at a stick, and horrendous bruising. They numbed her arm using a high-pressure numbing solution right at the stick point, and drew 7 vials of blood. All the while, she lay still on the table with me at her head, holding a little stuffed lamb and watching a little show. Afterward, they gave her a brand new My Little Pony figurine to play with and take home, which she was delighted about, and a princess bandaid , which she was even more excited about. It was a miracle.

7. I only had a few minutes to grab some things and head out the door after our pediatrician told me to take her to the children’s hospital, and I packed for a few hours, not 8. Sophie didn’t complain about being cold, thirsty, or hungry (even when she had to wait an extra 2 hours to eat because of her ultrasound).  After our 8 hour stay, we had only used 1 book and 1 toy that I brought. She didn’t need the rest of it. She was calm. It was a miracle.

8. She politely and happily remembered everyone’s name. Like I said, we saw 3 doctors, 8 nurses, and an ultrasound technician. She greeted everyone with a little “hi, Dr. ____” or “thank you ____” or “see you later ___. ” My personal favorite was the ultrasound. There was Chris performing the ultrasound and a student named Bridgett observing. As we left, she swung her legs off the table, gathered her things and said “See ya wayter Dr. Chris! Bye Bridge!”

Where we go now

It breaks my heart in ways I can’t describe to watch this beautiful girl suffer as a prisoner in her own body. I can’t imagine how frustrating it is to try to live and work and play and talk in a body that refuses to cooperate. To know what you want to do and how you want to do it, and not have other people understand or be able to do it yourself. I don’t know why Sophie has to live in this body or if I did something that caused it. But I’m grateful for the moments of clarity when I can see her inside and know that she’s in there. Her clear “yes, mama” from the hospital was one of those moments. I know she’s in there, being brave, and inspires me to be brave just a little bit longer.

It made me grateful for my little village–family, friends, therapists, doctors, specialists, teachers, church friends, and this little community. Thank you for your thoughts, prayers, happy thoughts, well wishes, and willingness to step in and help in any way you can. It means so much to me to know I’m not alone. As dark and hard and scary as some of these experiences are, I have so many wonderful people cheering me on and praying for me.

I wish I could tell you (and myself) what the future holds and what all of this means. We’ll be back to see the neurologist this week, and hopefully we’ll know more then. But in the meantime, we watch and wait and hope.

And, as always, I stand by the belief that God is good, life is hard, and love wins.