We had planned to drive 2 hours to Nana's house for Spring Break. With an okay from our doc we headed out. By the time we arrived...early afternoon Isaac could not walk at all. The swelling had moved into his knees- they were huge! And Isaac was in pain. This was the first time I really heard him complain and be upset by the pain. And it wasn't like the growing pains we had dealt with in the past. He did not want me to touch his legs. It was scary. I called the doc who called me right back and told me not to panic. We gave him a huge dose of ibuprofen and waited.
It occurred to me that the 2 1/2 hours in the car had allowed the swelling to settle-in. Now, the swelling is going to settle-in anyway, but sitting for that long period with little circulation made it settle-in quicker and it the pain was intensified.
Advice: Keep your child as physically active as they can handle. This played out so many times over the next two months.
That evening, once the kids were in bed and asleep, I felt the stress and anxiety just come down. I was angry. Very angry. Why was this happening to my child? Why couldn't anyone help with the pain and swelling? Why was the Internet information so generic and worthless? Why did that mother send her sick child to school? I really needed to blame someone even though I knew it was wrong. But then I was thankful that the chances were high that he would get out of this unscathed. It wasn't cancer after all and he wasn't in the hospital. Time to count blessings not compare greivances.
Advice: It's okay to feel angry and sad, overwhelmed and frustrated. Find a few good friends or family to talk to on a regular basis. I regularly felt that my docs (though amazing) and posted literature underplayed the pain this disease causes. Seeing your child in paralyzing, debilitating pain is not easy to experience.
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