This was a really hard week for our family. We keep saying that we cannot take any more. We said it almost 2 years ago, and year ago and now. Each time we think things would start to improve, we are hit with another smack up side the head.

My youngest daughter had been sent home almost every day for the last two weeks because of spine issues. She was having "electric shock" feelings, inability to walk as well as problems with her bladder and bowels. I can understand why the people at her school are anxious about these episodes. She came home one day in such pain that she was soaking wet from sweating. She was in a cool room, but her body was under such stress that she could not deal with the pain. We gave her some pain meds and she slept for 3 hours.

We took her to see the spine doctor. Before we could tell him what was going on with our daughter, he told us about how he had presented a paper about her surgery. He said that her x-ray was two stories high and her story surgery stopped the international convention because so many doctors had so many questions. Then he said that the moderator interrupted the questions saying, "99% of you do not have the skill to do this surgery on someone so young and the other 1% that do, do not have the b%##@ to do it."

So, with that said, we explained what was going on with our daughter. He said that nothing could be done. She will continue to deteriorate because developmentally she is in a stage of little physical growth. With the onset of puberty, things will get worse. She would continue to have episodes where she cannot walk and be incontinent. He told us to use the wheelchair and the back brace.

As you can imagine, this was a blow. We always knew that things would not be smooth in the future, but this hit us hard. We began to re-evaluate our outlook on how we spend our time. We go to all of these doctor appointment thinking that we would find relief of pain for the girls. What we are hearing now is that a pain free future is not possible. The doctors can help with the symptoms but because EDS is body wide, we need a multitude of experts to handle emergencies and other problems.

We do not dwell in despair with this realization because at the core is a hope that cannot be crushed. We have three wonderful children. We cannot thank God for giving us these precious gifts ant then curse Him because they were not our idea of “perfect.” While we do try to keep a healthy perspective on daily events, it is very difficult when there are so many big issues we are dealing with through our family. There are some days that appear hopeless and some are more positive. We laugh when we can and allow ourselves to cry and question from time to time.

On Friday we saw a new orthopedic doctor. He saw both girls and we all felt more comfortable with this doctor than the other. He spent a long time talking about how we came to realize that the girls had this condition and what went into the decision for the C1-C2 fusion. He agreed with all of the doctors that my youngest has a lot of scary symptoms and she is in pain daily, there is little to be done about it at this time.

Then he left the room for quite a while. I think he needed to get his head out of the youngest daughter's problems so that he could accurately evaluate the oldest. He focused all of the time on her recent injury. She had not been able to return to school since she left in an ambulance. It took us 6 days to get a wheelchair and he wants us to get a different one because it was not fitting her needs. He also wants her to stay in bed, in a vertical position all the time. He ordered a potty chair to eliminate movement. She has already sprained the other ankle from hopping on it.

He scheduled a test that would give a better picture of her hip. The x-ray showed that the hip was not broken, however, it does not show damage to tendons. He suspects that she has a tear in the the part of the hip that keeps the joint together. She will have dye injected into the hip, then have an MRI to show things better. She will have to undergo general anesthesia as this is a painful procedure.

All of this means, in practical terms, that she will be out of school for an extended amount of time. We had to move her bedroom downstairs. Because my husband will be in and out of town for the next 3 weeks, I will have to take care of her the best I can. I do have family coming in to help with appointments, but it will be hard. I cannot lift her, push her in her chair, transport he by car or pick her up if she falls. I also will have to leave her alone if I have to go up and take care of my other daughter.

I know that I know that things will work out in the end. Right now I just need a little glimpse of the unfailing love of our Creator.