The Devil is in the Details

Please pray for us. We are scared, Kate is scared and we are focusing on how we are going to respond. Yesterday, Becky was looking for a verse to focus on and came up with II Timothy 1:7: "... for God gave us a spirit not of fear but of power and love and self-control." This is now our family verse.

There is simply no easy way to say that my daughter is getting scleroderma. Even this last sentence sucks and ticks me off and makes me want to throw my slowing laptop. Yesterday, we went to Seattle Children's Hospital to see her rheumatologist and we knew it was going to be a tiring day. She had a pulmonary function test to start, then an echocardiography and her doctor appointment with a blood draw in there as well. The two tests went fine, the exam is testing our power and love and self-control.

During the examination, we saw Dr. Nanda's concern as she looked at Kate's fingers and when she told us that they are a bit shiny, Kate's face betrayed her fear. She looked to us for reassurance but we were not convincing; shiny fingers only means one thing, the disease we have prayed she would never see. This means that Kate is more or less in "pre-scleroderma," before she was simply "pre-something, maybe." Dr. Nanda began Kate on a treatment we have been holding off on, told us what the next step would be if things progress and Kate then had her blood drawn. Her fear got the best of her for that as I heard her scream in the lobby when she got poked.

After the appointment, we went to supper. The picture above is from our booth and it truly breaks me. You can see the utter fear in Kate's eyes. She is a smart cookie and could tell something is wrong. When we got back to Tacoma, I sat down on her bed and talked to her. At first she just asked about getting blood drawn, but she eventually asked the question I knew was inside: "Why did God let this happen to me?" I told her about Russell Wilson and Super Bowl XLIX, his conversation with God and the need to let people see him react to the loss while still praising Him.

Kate also asked what the disease was called, what would happen if they found bad stuff in her blood and what was going to happen. I told her its name and told her that what we are going to do is focus on what she has: rainbow fingers and skin that is shiny. I told her we will watch her fingers because they might get stiff and start to curl. She didn't sleep well, up past ten worrying about having nightmares about scleroderma. She doesn't know about systemic v. localized or anything like that, she knows what she has and that is what we are focusing on. We are waiting on the blood work, if it comes back positive for SCL70 or anything else, it means we are not in "pre-scleroderma" anymore but will be full-fledged.

As Becky laid next to me and cried last night, she lamented the fact that our eight year old girl grew up yesterday. We don't want this for her, we weep for her and we are all scared. This sucks and it is not easy to trust God, but we are and He is loving.