Wednesday, March 7, 2012

Our Hurdle

We've had our first real hurdle this week to contend with in raising children...finding out our child has a disease and it's out of our control. It happened Sunday evening. I was getting the boys out of the bathtub when I noticed a bald patch in Jack's hair. It was about the size of a quarter, right there on the top of his scalp. Needless to say, I was alarmed, and thinking of all the possibilities of what this could be. I asked if his hair got pulled..."No, mom." I asked if he played with my razor..."No, mom. I didn't." I asked if it hurt, if he noticed it, if he felt okay. "I feel fine mommy, I don't know what happened."
In the pit of my stomach, I had a feeling something wasn't right. Jon fixes his hair almost every morning, he would've noticed something like this. Brushing his hair, it was actually difficult to cover up. This couldn't have been there for a long amount of time. Someone would have noticed.
The next morning while getting Jack ready for school, I first checked his head to make sure I wasn't dreaming. Still there. I had been doing research on Google the night before about what this could be and I was almost positive this was Child-onset Alopecia. I hoped I was wrong. Technology can be scary, especially in situations like this. You almost wish you weren't able to get quick information at the touch of a button, online. Then, you worry yourself sick. Jon took Jack to school, and as I walked into our den, I saw it. There was the hair lying on the den rug. I'm not talking a few pieces of hair...it was a handful. There was no way this much hair could've been pulled from his head without him screaming and blood being drawn. This was a lot of hair! It would've taken a lot of force! I noticed all the dark roots were still attached to every strand of hair. His scalp was a perfect pale peach color...no roots showing. It was almost like the hair never existed there to begin with.
We got Jackson into his doctor yesterday morning. She took one look and said, "I was certain you were wrong, I thought this was going to turn out to be ringworm or something, but I'm afraid you're right." My heart sank. Jack was diagnosed with Childhood Alopecia Areata. It's an auto-immune disease where basically the body's immune system, for whatever reason, sees the hair as a foreign invader and attacks it, causing it to fall out in huge clumps. This disease is tricky to treat since it seems every person loses hair at a different rate. Some children may develop one patch and hair grows back, some kids have many giant patches all over their scalp. It can be in remission for years, and all of a sudden come back with a vengeance taking all hair on head, face and body. There's only three treatment options and the doctor said all of them are about as effective as pure luck. There's no cure for this and side-effects of medications bring in a new list of concerns. The good news seems to be that of all auto-immune diseases, this seems to be the least terrible. He's not going to be in pain or have other problems come along. His immune system won't weaken making it harder to fight off other illnesses or diseases. It's not going to kill him....physically, at least. This whole time, I've been telling myself, the worst thing that can happen is that he loses all his hair. But, as a mother...that's not the worst. The worst is that I can't fix this. The worst is that I can't keep people from staring or making fun of him. The worst is that I wonder how this will shape his life and his self-esteem and how he will overcome this hurdle.

Jon was tucking Jack into bed last night. I stood at the bottom of the stairs and listened as Jack said, "Daddy, I don't want to lose all my hair." Jon began telling Jack about the bible story of Job and how Job had it all and lost everything. He lost all his riches and became poor, lost his family, his health. He became covered with sores and was in excruciating pain. Satan tested Job in every way possible to see if through all of this disaster, if he would turn away from the Lord. But, Job didn't. Even in hardship, Job praised the Lord. Jon told Jack about his hurdle in life. Ever since Jon was a boy, he wanted to play baseball. He dreamed, and worked, and planned. After he got many college scholarship offers, he took probably the worst offer just so he and I could attend college together, in the same state. Injuries kept coming up one after the other and no matter how hard Jon tried to get stronger and nurse wounds, his body wouldn't let him keep playing. He was devastated about that loss of that dream. But Jon told Jack, how he knew that God was telling him that baseball wasn't what he had planned for his life. Jon said to Jack, "God allowed me to not succeed in baseball, so that I could marry mommy and have three boys to love. God had a better plan. "
I walked into the room and Jack asked me what my challenge was. I explained to him how I didn't have a great childhood and how I longed to be a part of a close, loving, family. My mom's mental illness has been my hurdle. We talked about kids in Jack's class. One little boy is in a wheelchair and still wears diapers. He will never walk. I asked, "But, he hasn't lost his joy, right Jack?" "No, Malachi is still really happy even though he can't run with us on the playground." I asked him to name someone else in his class, and what their challenge might be. He mentioned his friend who doesn't have a dad. "His dad lives a long way away and he has another family and he never comes to see him."
"So, everyone has a challenge right, Jack?," I asked. Jon chimed in, "And just like Job, we're going to praise God in easy times, and in the rough times."
Please keep us in your prayers as we are referred to a dermatologist next week. Hopefully, he will have some more answers for us then.

2 comments:

  1. Dearest, I don't know you - I just saw that my cousin's wife, Diane Wehmuller, commented on your facebook post with this link. Just wanted to tell you there is a lovely young girl I know who has this same condition. She is such a beautiful witness to the Lord. I want to put you in contact with this family. Hope it's ok if I send them a link to this article.
    Anna Belle Thornton (annthorton56@gmail.com)

    ReplyDelete
    Replies
    1. thanks so much annie! that's really sweet of you. I'll post an update on jack, soon.

      Delete