Now that my husband is home from his mission trip, I thought that things would calm down a bit. How wrong can I be? I should have known, by the way everything has progressed that the storm was not over.
The day after Erica went to the hospital after the 10 year old boy beat her up, we had to head back down to the ER because she was complaining of vision problems. Everything was okay, she will probably need glasses at some point, but this is not big. This is a normal problem, and normal is good.
The next day I had scheduled too many appointments in order to have my husband attend some of these meetings. The family left for the visits at 7:00AM and did not return home until 9:30PM. The first appointment was with our geneticists. It lasted for 2 1/2 hours. The majority of the conversation was about what to do with my 6 year old and her pain. She has two separate issues in her spine that need attention in the short term. The first problem is that her cervical spine is no longer curved as it should be. The big problem with her whole body is that it is too hypermobile. The same is true for her spine. Her neck vertebrae are not holding up her neck like it should and it is collapsing. This causes pain, neuropathy and muscle spasms. As an adult that has the same problem, I can tell you it is unbelievable pain. The thought that my daughter suffers the same as I do is almost more than I can bear.
So what are we going to do with her and for me? Right now I am unable to do much. I cannot wash a dish, clean, or type (I am on a lot of drugs right now). The only option that I see right now is surgery. It is very difficult to pull myself out of the equation for my daughter. The doctor said that there are little options for my daughter other than surgery. If she had the surgery in the even the next 6 years, she would be the youngest person to have the surgery with the cause being Ehlers-Danlos Syndrome. This is all hinged on if the surgery would even give her relief. Physical therapy is not an option because the neck muscles are not designed to hold up a head, only move it. Once the neck starts to collapse, there is nothing that can reverse it, save surgery. If we wait too long to have the surgery for her, the nerve damage might be permanent.
She also has another spine issue in the lower back. This is causing her to have extreme leg pain as well as problems controlling her bladder and bowels. With this area of the spine there is more hope. She could wear a brace, work on core exercises and other treatments before even considering surgery. The problem is that she is in so much pain from the neck, that she will not do the physical therapy for the rest of her body. She continues to have hip and shoulder dislocations, finger, elbow and toe dislocations as well. If we cannot get her to do the exercises, she will continue to lose muscle tone and we are stuck in a terrible cycle.
No decision has been made for Erica, but I am scheduled for surgery on Aug 5. I am hoping to give Erica some hope by having it done first. It is a horrible thing to have your little daughter cry in pain and look to you for relief and you can offer nothing.
At the same time as all of this is happening, we have a death in the family. My youngest daughter's mouse, Bubbles, pasted away. The next day, our cat Oreo also died. The mouse was sudden. We did not notice any abnormal behavior with her. The cat on the other hand, had been suffering for some time. She had feline leukemia. We got her from the pound 4 years ago with one of her sisters. After her sister died, our vet told us that both cats had this form of AIDS. They suggested that we have Oreo put down at that time. We thought it cruel to do that without giving her a chance. She had 4 real struggles with viruses and each time she recovered with the help of forced feeding and drinking. This time was different and she could not recover.
My oldest daughter asked me why she had to die right now, with everything going so badly. I asked her why it didn't happen when we first got her; or when her grandpa died; or when her sisiter had her surgery; or when I had my surgery; or when she broke her leg. "I don't know why all of these things are happening in the way they are and I will probably never know. I do know that we are not being punished or tortured by God. We are being carefully molded and taught. For what purpose, I do not know. What I do know is that God will give us everything that we need to get through this time together as a family." Satan wants to destroy us, to make us pull away from God, but the harder evil tries to squash us, the stronger God makes us.
Without God's blessing hand in all of these events, we would have given up long ago. I know that I am not that strong, but I do know God is.
