Out of all my kids, Levi has been the most noticeably affected by Greg’s death. Levi also has vEDS. He was diagnosed when he was 5 years old, and we have tried to be open with him about his condition since he was diagnosed. However, we were also able to protect him from the scary parts of vEDS before Greg’s death. My older kids clearly remember some scary vEDS related events from the past, but Levi was young enough to be oblivious to the scariness. We told him enough about his condition that he would know how to take care of himself and stay safe, but we tried to avoid telling him scary things about it.
When Greg died, I was concerned about my kids becoming anxious about their own health, especially the ones who have vEDS. The social worker at the hospital told me to be honest with them, but to only tell them as much as they ask for. My kids asked enough questions to understand what happened and that Greg’s death was caused by vEDS. Think about how terrifying this information would be. To realize that you could suddenly die just like your dad. This is so much to process. It was very difficult information for Greg to deal with as an adult. For a child, it is just too much.
A few weeks after Greg died, Levi started having panic attacks. These panic attacks were very severe and debilitating. He would scream and cry and beg me to take him to the hospital. He would tell me his chest and back hurt, which is where Greg complained of pain before his death. He hardly slept, ate barely anything, and going to school was out of the question. Car rides and being in public made the anxiety worse. It was a very dark time for him, and for me as his mother. It is hard to see your child suffer. He is doing much better now, but still struggles with anxiety.
This kid has been through so much. In the past year, he has had an appendectomy, lots of illness, and a knee injury that will require surgery.
I have been thinking a lot about courage lately, and about how courageous Levi is. Some might see him as weak. He may see himself as weak. Sure, he has weaknesses, and he has had a very hard time, but courage is not the absence of weakness. The definition of courage according to the Oxford Dictionary (2022) is: the ability to do something that frightens one; strength in the face of pain or grief. This fits Levi perfectly. He is having to face his fears every single day. His goals for the past couple months have been to eat, sleep, and go to school. It seems simple, but he has had to climb mountains to be able to achieve them every day. He keeps going, usually with a smile on his face. That is courage, and that is strength. I am proud of this incredible kid, and I hope he will be able to see himself as the courageous kid that he is.