The Game Changer

The day began with my husband and I explaining to Elizabeth that the doctors cannot find a way to surgically repair her hip right now. Chuck and I had known this was probably the outcome of the inquiry of other surgeons, but we had a little hope. Apparently Elizabeth had a lot of hope and was devastated when we told her. Chuck quickly tried to cheer her up, which just send me into a fit. She just learned that no one can help her hip feel better and she will only get worse. This did not seem to me to be the time to expect her to look on the bright side. My anger did not help the situation. I did tell her that this non-fix answer is not acceptable and we would continue to ask and push for a good solution.

I checked my email this afternoon and there was an article from EDNF (Ehlers-Danlos National Foundation). The article was about a young woman that was a star basketball player. She hurt her hip and had a couple of unsuccessful surgeries until the doctors realized that she had EDS. It is amazing how God can use so many ways to comfort us when we are low. I printed out the letter for Elizabeth to read. She wrote a letter back immediately. This is what she said:

Hello, my name is Elizabeth Schulze. I am 11 years old and have the same condition. I have a tear in my hip and found out today that they can't fix it. Your story helped me get through the bad news by knowing that someone else understands what I feel. Thank you for letting me know that I am not alone and neither are you.

I had been emailing all of her doctors and Erica's most of yesterday, so I intentionally did not do much today. It was 7 hours of almost no stop communication with doctors, therapists, insurance companies and bill collectors. By the end of the day I was physically ill with worry. Of course, I had received the news about the hip yesterday. I was also waiting on an answer about my mom.

Here is the deal, back before my C1-C2 fusion, I had a really bad spell where I was passing out, disoriented and so on. I was hospitalized a couple of times and the doctors found a lesion (bleeding) in my brain stem. There were many theories about why and no one really wanted to tell me much other than it was there. I know I did not have this problem 16 years ago because I had a MRI done after I was in a bad car accident and no bleeding was shown on that brain MRI.

My mom had surgery last summer and was in ICU for 18 days because she did not have the drive to breathe. The doctors insisted that it was not neurological. Well, she had another surgery this summer and she did not breathe again after surgery so finally they decided to get some answers. Mom got an answer today. She also has a bleed in her brain stem.

A few weeks ago Dr. Tinkle talked to me about the possiblity of Mom having a leision as well. I asked if this then could be connected to EDS to which he replied, "It would be a game changer."

Mom told me the news on the cell phone as I was in a restaurant with my family celebrating the 16 anniversary of our first date and my birthday tomorrow. I looked across the table at my kids. They are so beautiful and fun. We were all laughing and talking. The thought that at any moment I would not have the privilege of seeing their smiling faces, made that moment all the more sweet.

To be honest, I am more relieved than upset. My dad lived to die. He got a deadly diagnosis and died long before his earthly body did. I will hope to never do this. I want to enjoy and love and live every moment. Through all of our trials and tribulation there have been extraordinary times of joy, peace and love.

Do I think that I am going to die anytime soon? No. But I do want to enjoy all the time that I can. I want to make the most of the time that I am not in pain or in a doctor's office. I want to remember that this life is not the end. This is not our home. Our home is a place where tears are not shed and pain is not felt and debt is not remembered.

I am not sure what the outcome will be from this news. I do not know the implications that this will have on my daughters. I don't think the doctors even know. I do know that this illness is not who I am and not who my mom is or who my girls are. We are not broken. We are what we are supposed to be and not mistakes of a gene. We are loving, caring, strong, intelligent females.