Home » Challenges » Benjamin Update

Benjamin has now been to Stanford twice and we are in the midst of paying for, scheduling and preparing for his next trip in two weeks. It’s a lot. I am overwhelmed and quite discouraged.

His pain management team has been unable to truly help him. He is dislocating his ankles, knee, shoulder, and sometimes hips and others. His stomach issues have escalated to needing Zofran regularly to keep food down, and he is back to having migraines most days of the week. The Depakote helped for a while, and it is keeping him from passing out, but that means he probably is/was having seizures.

They told us he was severely deconditioned and to avoid having to place him in a residential treatment program we have had to do a lot of exercises and walking. He has responded to that and is doing better in that area, but he still struggles with pain that makes it hard for him to be active. I also struggle to know how much pain he is truly in due to the autism and other behavioral things we work with that make his reporting skewed. I can see it is bad, but I have no idea how bad it truly is.

This trip we see a geneticist to test him for a connective tissue disorder, most likely classical or classical-like EDS, or Ehler’s Danlos Syndrome. He’ll have an MRI to try and detect a CSF leak, he’ll follow up with his neurologist and his pain management team. Thankfully it looks like Miracle Flights may be able to help us with flights there and if we’re super lucky we’ll end up staying in the Ronald McDonald House and be able to avoid the more burdensome travel expenses. It has cost all that we have to take him in the past and our car is dying and needs to be replaced desperately.

I am discouraged because a genetic condition like EDS has no cure, no solution and feels somewhat hopeless. I know many kids with it and it’s hard to manage. He already deals with so much, I cannot imagine him dealing with this all of his life. It also means that is probably what is wrong with me, and I am not ready to fact that yet. I cannot seem to find a way to truly help him, and having him struggle with pain and illness daily is wearing me out and taxing my limits of patience, endurance and mental health. I want him to be healthy and to have a happy, normal life. I do not want him to have to live a life of pain and illness.

I really have no idea what to do and I am super worried about our finances and the car. It’s making me sick so I need to turn this over to God and trust that we will find a way, but so much seems to rely on me and my ability to secure help, funding, appointments, and authorizations. It is many hours worth of paperwork, research, phone calls, research and so on. I struggle with chronic illness, pain and fatigue. This is too hard for me to do, yet it is my kid and my job. I feel like I am failing him and my husband because my illness does not allow me to work or do the things I need to do to truly help him. I am doing the very best I can, but it is frustratingly slow and insufficient. I feel very alone.

I have faith that there is a plan for us and for my son, that God knows us and will help us. I have friends and family that love us and support us as best they can. Sadly that seems insufficient right now and then I feel guilty and selfish for not being more grateful. I just want Ben to be ok and there may be nothing that will make this right for him short of many miraculous healings. I am doing the very best I can. I wish that felt like enough.

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