This Sunday will be two years from the day that our pediatrician told us Allie had cerebral palsy. I’ll never forget that moment.
We knew that Allie was having trouble moving her right arm and we had spoken with the doctor about our concerns in the two visits leading up to our September visit. We had made an appointment with the neurologist, which was scheduled for months later, but it was a “just to be safe” visit. The doctor had also put us in touch with our county’s early intervention program to see if we qualified for physical or occupational therapy, but they also took a lot of prodding to get someone to come out. A few people we knew told us about “pinched nerves” and other treatable ailments that their children had and worked out fine. We knew something was up but it didn’t seem scary.
The early intervention people finally came out on September 22, 2011 to do a brief assessment to see if they wanted to send out the full team to test Allie. The woman agreed that there was something definitely going on with her right arm but also noted a “tone discrepancy” in her right leg. I had never noticed any difference in her leg. As soon as she left, I called the pediatrician for an urgent appointment and was in her office about an hour later. The doctor did some brief stretching with Allie, looked concerned, turned the computer so I couldn’t see what she was typing, gave me a long stare, and then excused herself for about 10 minutes.
She came back prepared: a couple print outs about cerebral palsy, a few more phone numbers of people we should call, a list of calls and appointments she was going to make for us, and a box of tissues. I guess she knew I was not going to take the news well. She turned to me and asked if I knew what cerebral palsy was. I said not really but in my mind I was thinking about the wheel-chair bound people I had met throughout my life who had difficulty eating and talking.
She explained to me that when there is damage to a baby’s brain, it can lead to difficulty using muscles. There can also be learning difficulties and other challenges that come along with it, but that most people with CP go on to live meaningful lives. She told me about one of her other patients who is able to play basketball even though he has CP. In my mind I was thinking ‘Who the hell cares about basketball? Will my baby be able to talk? Read? Learn? Have friends?’
I don’t know if I even said anything after that. I think I may have just nodded with tears streaming down my face. Good thing she brought the tissue box.
Allie and I eventually made our way outside. I called Jonathan at work, told him to sit down, and regurgitated everything the doctor had just said to me. I was in such shock that I don’t even remember how I got home. Maybe I took the bus. Maybe I called a cab. I have no idea. The only other thing I remember from that day was staying up all night googling variations on “clinched fist baby” hoping that I would find some totally treatable thing that just looked a lot like CP. Instead, all I found were scary things that can cause CP and, before you know it, I was worried that Allie had a brain tumor and was going to die.
We had the MRI in early October, which confirmed a stroke. I remember asking the radiologist if it was a “big” stroke or a “little” stroke. He said that it was an “average” stroke, which I now take to mean an “ask your neurologist about it because this isn’t my area” kind of stroke.
We went through a month of having the exact same conversation with every person we knew and loved about how Allie was doing, what her next doctor appointment was, when were therapies getting started, what are we doing with the therapies, and—the big one—why did she have a stroke in the first place? By the end of the month, we couldn't remember whom we had told what to and people started asking why they were hearing about news secondhand when they had just talked to us yesterday. Right about that time, this blog was born.
Looking back, this blog gave us a chance to be normal parents. Allie’s disability slowly became a smaller and smaller percentage of what we talked about. Everyone knew what was going on and our burden of knowledge dissemination lessened.
I often scroll through these blog pages just amazed at how far Allie has come. The wheelchair bound person is no longer who I think of when I think of CP. Allie is developing wonderfully, has friends, can talk, can eat, and do all of things that I hoped she would be able to do.
The early intervention testing that we’ve been doing lately has really confirmed in my mind how lucky we are. That is not to say that Allie is without challenges, but right now they are manageable challenges. She is charming and endearing and I cannot imagine her any other way. She is a great example of determination and perseverance and I am lucky to be her mother.
Thank you for continuing to follow the journey of Allie growing up.