This is Day 22. And I think that today is the day that I can finally “own” this miracle -- that I can finally say that it is real. That I can finally breathe out just a little. At least in this case.
Tommy is the baby of the family. Although
Punella is one week younger than Tommy, Tommy came to us from the hospital at 2 days old (
Punella was 6 years old). We had to sneak him out of the hospital, so I got the joy of riding out in a wheelchair, holding the baby, as though I had just given birth. No one but us and the hospital staff knew that all along our way, there were hospital guards and personnel standing and discreetly nodding, ready to respond should the biological mother realize that I had him instead of her. We got out and into the car without incident. And the baby came home.
And then he started crying. And he cried and spit up. He would only sleep with a pacifier in his mouth, and that pacifier often had to be held there. He was colicky, but it was beyond that. Projectile, constant spitting up. So bad that I had to put him to sleep on his stomach, a big no-no. So bad that many nights, I was up and down all night comforting him, sleeping trying to hold his pacifier in his mouth. He was miserable. I was miserable. But I loved him still. Oh, God, I loved him.
Other than his inability to digest, all of his “milestones” were normal. Everything was as it should be. We went right along until it was time for him to walk. He knew it was time. He had been working up to it just as any baby would. But he
couldn’t master it. With two black eyes from falling flat on his face, the pediatrician sent us to the orthopedist. The orthopedist made some diagnosis and ordered a walker. Before the walker arrived, Tommy
didn’t need it. We were ecstatic. He had overcome whatever it was.
But my mother had also said to me, “I don’t think he’s talking like he should.” So off to speech therapy we went. And we stayed. But speech therapy was acceptable. My now toddler was walking. We could handle a speech difficulty. Not being able to walk would be devastating. Mispronouncing some words was small stuff. He would overcome it.
And then I saw them -- the tremors in his hands. At first, I
didn’t believe it. But we all saw it. The doctors saw it. And thus began the round of visits to doctors. First the Developmental Pediatrician who found a condition called “
clonus” in his feet and legs -- when the toes are pulled upward by the doctor’s hand, there were extra beats or shivers that his legs made. It was a neurological indicator that something was wrong. And he was walking on his toes. Another big indicator that something was wrong.
Literally seven neurologists later, we had only a theory of a diagnosis. We had seen two neurologists in our city. We saw the pediatric neurosurgeon in our city. We had gone to the neighboring state to see a neurologist who tried
botox injections in the calves. Oh, he screamed and I died just a little when that happened. We’d gone to the upstate to see the geneticists who found nothing. Then to the low country to go through three more neurologists until one finally said, “White Matter Disease”.
White matter is the covering of the nerves in the brain and spinal cord, and the theory is that this “white matter” was somehow genetically damaged. I was told that it appeared to be grey matter sparing, which they explained that gray matter is the brain. Therefore, his brain, his learning, his ability to process information may not be damaged as well. By this time, he was age 3. He had stabilized. He still had tremors and still was toe walking but everything was progressing. Not like a “
neuro-typical child,” but progressing nonetheless. We were sent home with a plan, which was what I needed. Every six months, we were to evaluate to determine his condition. If he made progress, we were good. All was well. If we either made no progress or went backwards, we were to return to the neurologist immediately.
We lived for years with the realization that he carried a diagnosis that could be deadly. I had done enough research to know that at any time, he could begin to regress. And that the regression could be rapid. And that there were many diagnoses that fell under this umbrella of white matter disease where the regression was horrible resulting in the child dying a long, painful death. One where you want the child to die in order for him to have relief.
If that’s not the definition of living in hell, I don’t know what is. I’
ve lived with that in my life for more than five years now.
Fast forward to May 26 of this year. We were back at the neurologist. Tommy’s
IEP meeting at school, where his progress was discussed, brought the realization that he had begun to talk much less. Almost because he was not able to. He seemed to not be able to form the words with his mouth. Teachers noted tremors were increasing. I had already begun to take him to private speech therapy at the hospital where the therapist saw tremors in his mouth. The neurologist ordered an MRI, blood work and urine tests. Began naming possibilities of diagnoses. Apparently we were out of the woods of our previous fears of the long, painful death, and we had moved into the phase of trying to determine what the condition was and finding the treatment. One condition suggested would require a bone marrow transplant. One would require a trial of Parkinson’s medication.
In the meantime, he worsened. Simple things like getting toothpaste on a toothbrush was nearly impossible because of the tremors. Feeding himself was difficult. Writing. Anything using the hands. At age 8 he
couldn’t tie his shoes. He longed to wear “tie shoes” but had to ask for help if they came untied.
His mood had declined around age four and he was now at a point where we could not even touch him. Similar to the Tasmanian Devil in the cartoons. It was almost painful to him to be touched. He screamed. He raged. He threw things. He hit his siblings. He fell on the floor
tantruming. He was as miserable as he could be. And we just wanted to hold him and he
wouldn’t let us. He needed help with simple tasks, and he was frustrated with an already nasty attitude and he would not allow anyone to help him. He would fall on the floor in a heap crying because he could not do things that he once could do.
July 7, we returned to the neurologist. And thus began the miracle. Or THE MIRACLE. The MRI came back normal, which I expected it to do. The blood work had indicated that the proposed San
Fillopos disease, the one requiring a bone marrow transplant, was normal. Urine tests were not yet back, but there was the possibility of trying the Parkinson’s drug. We had 10 days before he was to go to overnight music camp, and the neurologist set out a 10 day protocol for trying the medication. By Thursday, I had located the medication in our city. And Friday morning, we started the first dose.
And our Sally came home from camp with him and said to me, “I see a change.”
But I
couldn’t yet see it. I may have been there, but I
couldn’t do it. It had been many years of living with this fear that my baby would leave this earth before me, and I
couldn’t yet own the progress. I was holding my breath even harder than before and I
couldn’t let it go yet.
But the progress continued. Monday morning, Tommy went to occupational therapy where he brings his breakfast and practices eating without spillage. The week before, all the interventions the therapist tried brought about no positive results. His hand , holding a spoon and eating breakfast, continued to shake drastically. However, on THIS Monday, at 8:50, the end of the session, the therapist came to me in the waiting room with a look on her face. He had poured his milk on his cereal and eaten every bite without one drop. Without one tremor. And the therapist went on and on about his disposition. She laughed about his sense of humor. He had previously been so flat with his affect, but he was interacting, engaging, and laughing with her. And one little part of my heart opened up.
Days later, we were at the house. One of our usual evenings with 14 people at our dinner table. Some had finished dinner and had wandered off. And from out of nowhere, Tommy came running up to me, hugged me and kissed me. I grabbed him and screamed! For four years, my child had not initiated any affection with me. I wanted everyone to see. Over and over, I screamed, “LOOK AT MY BABY!!!”
And the smallest things have been such huge gifts from God. The other morning, he came around the corner after just waking up and said, “Good morning, Mommy!” Few know how long it has been since I have heard anything like that come out of his mouth. Three simple words that are not unusual for the other five to say to me. But I can’t ever remember hearing him say that. Never.
Today, again, is day 22. He’s taking the Parkinson’s drug, and he’s better. He’s talking so much. He interacting. He carries on conversations and tells me things about his day. Today in the therapy office, while waiting for his physical therapist, he voluntarily said, “Look, Mom. That sign says, ‘No eating or drinking allowed. Thank you.’” And on the way home, he began talking about his big sister and brother who are returning today from a week at music camp. He said, “I don’t want them to come home. They’re mean.”
And God, with his sense of humor and desire to make connections among us all, has someone working in my home right now who is on the same drug:
Sinemet. Milo is 68 years old and is Randy’s dad -- “Handy Randy” as I call him. Randy is helping Rex with his “Honey Do” list, and doing some alterations here and there to the house to make it more comfortable. Ruth comes each day, Randy’s mother, and we began talking about Milo. Milo has Parkinson’s and is so similar to our Tommy. He sleeps very little. He eats all night along but weighs 98 pounds, and he’s always busy. Always doing something. Prior to
Sinemet, Milo was hateful and depressed (
Sinemet contains dopamine, the happy chemical in our body), and now Milo, although he walks with a limp, is as happy as a lark. And he’s 68 years old and shows up here at my house almost every day. God’s way of showing me that there is hope. There are 60 years difference between Milo and Tommy, but I treasure those 60 years knowing that my baby might have 60 more good years.
The news is good, but the road ahead is uphill. It’s time to find the exact diagnosis. Especially since we have a clue of where to look. Tommy has surgery on Monday to determine why he vomits so often. It’s been treated as reflux, but it could possibly be related to the neurological disorder, so it has to be checked. Thursday, he sees the geneticists again. They still have his DNA banked, and there have been many advances in the past five years. The next week, we return to the neurologist who makes the plan of the tests he will need: likely muscle and skin biopsies and a spinal tap. Some here and some in Atlanta. Likely to be painful and difficult. But in hopes to yield an exact diagnosis and therefore lead us either to a treatment or a cure.
But again, I’m living in today. Day 22 of God’s miracle. His gift to me. That my baby who has been lost from us emotionally for four years, even diagnosed with autism, is back. He will walk in the door from camp today and not start hitting and throwing things. He’ll have something to share with me about his day. He’ll be pleasant to the people in our home (maybe not to the mean ones returning). His siblings will be able to play games with him like they have tried to do for six or so months now. He can wait his turn. He can enjoy playing. He can handle losing.
And I ask if you’
ve taken the time to read this, that you keep my baby in your prayers. That the diagnosis is easily found with little pain. And that the cure or the treatment is simple. And please do remember that God still does perform miracles. One of His miracles lives in my house right now.
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