As you will read here, the Ward family is facing a serious crisis to make all our other ones seem small. I’ve copied (with permission, of course) my wife Sara’s blog entry here. This is her account of what has happened to us. Before you read though, I’d like to add two things. At this point, I have had these confirmed in my life.
1. God loves us and doesn’t want sin, disease or death. Those were apart of the Fall and happened because Satan deceived us. In fact, God sent His son, Jesus, to destroy them and crush the Evil One.
2. Our Father has a sovereign plan for all of us. Part of his plan for Silas was to place him in our family. God knew he needed us. I wish it didn’t have to be this way, but through it all we know God will be glorified.
We’ve had a few things on our plate recently which happened to coincide with our move. I have debated how I want to say this or whether I wanted to put it on my blog at all. But it wouldn’t be too long before people would notice something different and then there would be awkward questions and the feeling that I was trying to hide this from people, when really I just didn’t want to deal with the questions. And it will help me to avoid being overwhelmed by phone calls and emails and conversations in the church lobby when I have two hungry grumpy children who just want to go home.
So let me start a few weeks back, at my son’s 9 mo. checkup at the end of July. He has been struggling with low muscle tone since the doctor noticed it at his 6 month checkup. She wasn’t particularly worried about it at that point, but he is floppy and not very strong and his head control is sometimes good and sometimes very wobbly. We began to get therapy for him through our state’s First Steps program which provides free or low cost physical, occupational, or speech therapy for children under three. The therapists noted his weak muscles too but said he was beginning to improve with his exercises.
At his 9 month checkup, his pediatrician became concerned. Even with some improvement in his tone, he still can’t sit up unassisted and his head control still wavers. She was also concerned that his head didn’t grow as it was supposed to. At that point she ordered a brain MRI. I was very upset by this. It suddenly seemed to indicate that there must be a problem with my little boy and I became very scared as to what it could all mean. I weighed the possible diagnosis with his signs: cerebral palsy seemed most likely, but it could also be muscular dystrophy. I was hoping by some small miracle that it would be none of those things. This is always a parent’s hope, that one’s child would somehow escape the worst and turn out okay after all. I related to a rabbi’s comment I once read in a book: “Everyone wants their child to be normal. Normal, but not average.”
The MRI was a mix of emotions. It was scary to see my child drugged and fall immediately into a deep sleep and then pushed into a giant cavernous rocket ship where all I could see were tiny toes sticking out from a paper blanket. He looked so small beneath the giant machine that pinged and rattled and clanged.
After what seemed an eternal wait for the MRI to be done, they pulled him out and as quickly as he had fallen asleep, he seemed to awake. We left the hospital feeling hopeful that nothing would come out of it (ignorance is bliss) and went home to do final packing for our move. We were closing the next day on our house.
A few hours later we received a call from our pediatrician. I’ve learned, since Sam going through cancer, that doctors never call quickly if a test result is normal. The doctor informed us that there were dark spots on Silas’ brain called acute necrosis encephalomyelopathy, which sounds like a bunch of gibberish than real words if you’re not in the medical world. But there was one word that stood out to me: necrosis. I knew vaguely what this word meant because of Sam’s cancer. Necrosis meant dead or dying tissue and the fact that they used this word in conjunction with Silas’ brain was scary. The doctor went on to say that the MRI report said it looked like Leigh’s disease.
What is Leigh’s disease? I asked.
The doctor who was on vacation in a remote area and did not have access to internet said she didn’t know (another sign this was serious, the fact the doctor called while on vacation). She’d never had a patient with it before. She recommended we see a pediatric neurologist the next day for a confirmation of the diagnosis. We were supposed to close the next day on our house, but we’d somehow make it all work.
Immediately after I hung up I looked up Leigh’s Disease online. I began to read through some very confusing information. It was rare. It was a genetic disease. It affects the brain. The mitochondria, necessary for human life, are messed up. There is no cure. His prognosis is poor.
All I can tell you at that moment is that I went numb. It is one thing to be told your child has a condition. It is entirely another to find out your child has a fatal disease. I was in shock, like the blood had been sucked out of my body, like everything in the world seemed to drop out of sight, disappear, and all I could think of was this horrible disease killing my son’s brain and body slowly without any way to stop it.
I can’t quite describe to you how horrible it is to find out such awful news. We’ve been through it before, and until you’ve been through it yourself, you can’t imagine how sick you can feel, how utterly sad, alone, shocked, angry, and despairing it all feels. In good times, it’s easy to imagine yourself strong in such situations, but when it actually comes to pass, you realize how entirely weak and human you are. It’s not that you forget God’s promises, it’s more that you have to remind yourself that they are true even when it feels like you are completely alone and broken. God is still there. The world may be shaking, but God is still there.
The stuff that happened after this is rather a blur. We went to the neurologist the next day, who confirmed the disease, but did not have much experience with it. We then went from that appointment to our closing on our house and were forty minutes late. Everyone was very understanding. I felt very emotional, but managed to pull myself together to get all the papers signed. Somehow buying a house and signing a million papers felt easy after this. I didn’t even know what I was signing. I robotically scribbled my signature on each paper. What did it matter anyway? I couldn’t have signed anything worse than the news I had just been told. If I had signed my life away, I wouldn’t have cared at that moment. The truth was, I wished it was me. I wished I had the disease, instead of my baby. I wasn’t trying to be heroic. I would do anything so that he wouldn’t suffer. This is how every parent who loves their child feels. It’s begging at the feet of God, ‘Please God, don’t let my child die. Do whatever you want to me, but please, not my child.’
We moved the next day. The whole weekend was a blur. We found the distraction of being so busy a blessing in the midst of this diagnosis. It seemed to take our mind off things, at least for the time being and I felt so blessed by the people who humbly came to help us on a beautiful Saturday when they could have been doing a hundred other things. What a sacrifice. I hoped I could be as generous when people needed it.
On Monday, our pediatrician’s office called down to Riley’s Hospital for Children in Indianapolis. There is a neurologist/geneticist there who treats children for this disease. Coincidentally, he had a cancellation for the next day and we could take the appointment if we wanted. We jumped at the chance and on Tuesday we headed to Riley, less than a week after my son’s MRI.
Dr. Walsh was kind, brilliant and calm. We immediately liked him. He had a lot of information on the disease, but unfortunately not a lot of hope. Not that he was hopeless. His attitude was calm and upbeat about the patients he did have that exceeded the normal prognosis. Unfortunately, there is no cure, there is no medicine, no surgery, nothing they can do for it, except vitamin supplements. In our modern times when we have so much technology to help fight various diseases, they have nothing for this disease but different vitamins that are all considered experimental. Sometimes they help, sometimes they do not. If they do help, they might help slow the progression of the disease, but nothing really stops the disease. Silas had to get a lot of blood work and a urine test that will help them understand his particular case. There are no answers as to how this disease will progress in him. It varies child by child. Although the visit didn’t change Silas’ diagnosis, we felt a little better. At least there was one doctor who had experience with the illness and knew what to do. That made us feel somewhat better, especially since we felt so lost the last few days.
We don’t really know what the future looks like at this point. I often wonder about it. But then I get to worrying and it doesn’t really do much good. So I’m trying to concentrate on today. Silas seems happy and nothing really indicates that there is something wrong with him other than the fact that he’s behind with his motor skills. We’re trying to focus on God and his sovereignty and his control over the situation. Silas’ life is in His hands and we are praying for God’s mercy. This diagnosis is a new normal for us, just like every hardship is. We take it day by day. We ask for God’s help. We don’t understand it or have any answers for it. I guess we don’t need to right now. I just hope I can be strong for him. Silas really needs a good mama right now. I’m going to try and be one. For him. For all of us.
Pray for Sara. Pray for me. Pray for all of us. But mostly, pray for Silas.