I am angry

 We got home and I finally let myself get mad. I was giving Mike a recap of everything and I just laid there and cried. I just let it out. All of the driving and hospitals and working late nights, and trying to juggle life and all of these doctors who didn’t believe her. It finally broke me. 

I am just so angry that we have been fighting with doctors for answers for 10 years now. Ten years of excruciating pain for Ellie, loss of quality of life, missed diagnoses that seem easy for them to have found that would have made Ellie’s life better sooner. I am also just heartbroken. She is so much sicker than I ever realized. All of the doctors who told her to “see a psychiatrist” or “try yoga “. I could scream at them right now. How could they be this inept? Up to a few months ago, Ellie was probably on 10 or more prescriptions a day. Because that’s all the doctors wanted to do. Give her a pill to treat the symptoms, without finding a cause. 

She is 17 years old. This is not supposed to be her life. She missed all of high school. She missed out on cosmetology school and had to give up what she’s so good at and what she loves  because she can’t stand up for very long. She can’t drive or go away to college. She spends much of her time all alone with the dogs because everyone else is at work and school. It seems so unfair. 

The Dr told us that with all of her issues this won’t be a surgery and quick fix. The surgery may work or it may not. Ehlers Danlos is for the rest of her life. Hopefully the other issues won’t be. This could take years or even a lifetime. 

But then I think of Ellie and how strong she is.  And when I say she is strong and determined, oh my goodness. She gets her fight from me. (And her humor ). She knew something was wrong all of this time and would not stop. Even when I wanted to give up, Ellie begged me. She became her own doctor “Mommy, I think I have something called Ehlers Danlos Syndome”. “Mommy I think it may be a compression issue called SMAS.” “I need to find another doctor”. 

That’s all it took and I dove in head first. I joined a FB group for people dealing with these things. Which is how we found Dr. Cruz. We got worried because people were posting that he was cancelling appointments due to an emergency. Ellie was one of his last appointments yesterday before he got on a plane to travel. When we were at her appointment , you could tell he had already studied Ellie’s case. 

When I get angry I am looking only at the here and now. God sees the entire beautiful tapestry that he has woven together. I just know he will use this for his glory. And that is why I let myself have my moment of anger and heartache,  but now I will cling to the hope of Jesus and move forward to be there for Ellie. God has been working in my life and my heart over the past several years for this very moment. When I think I can’t do this anymore, He reminds me we don’t have to do this alone. One of my favorite verses is Isaiah 41:10

 fear not, for I am with you;

    be not dismayed, for I am your God;

I will strengthen you, I will help you,

    I will uphold you with my righteous right hand.