Happy 2021 everyone! With this New Year comes a lot of hope and promises. It was a long 2020 with many life changes and stresses.
I am the mother of a 28-year-old son, Michael, with severe hemophilia B and inhibitors due to allergic reactions to all factor 9 products. I know that sounds very stressful just typing those words!Â I feel like “mental health” is the new buzz phrase currently. With this pandemic and isolation, we all have had some depression and changes that we have had to deal with. Mental health and stress are not new to the hemophilia population. I think parents and patients deal with this every day.
I remember my son, Michael, dealing with stress and coping with depression most of his life. He wore a helmet when he was a child. He went to kindergarten and was still wearing one. He came home from school and was so upset because no one else had to wear one on the playground. My late husband and I contacted his HTC to ask for some advice. We had to make a choice whether to let him “fit in” or keep him as safe as we possibly could like we did at home. It became a mental health issue. He was not happy and felt like an outcast at school.Â We make those decisions to help them with their mental health and to make them feel as normal as possible.
I remember another time, so vividly. Michael had an iliopsoases bleed that took him out of the fourth grade for weeks. When it was time for him to go back, he needed to be in a wheelchair for several more weeks. I took him to school his first day back and helped him get up the steps. He had to scoot on his bottom while I toted the chair up the stairs. He did not want to go into the classroom.Â It took everything in me to make him go in. After I did, I went to my car and cried. I did not want him to feel different and an outcast. I made that decision and I knew it was best for him. We have to make so many decisions when they are young that affect their mental health.
I remember another time when Michael was with his Dad having dinner. He was upset and his dad asked him what he could do to make it better. Michael told him that he hated being a hemophiliac and that he hated wearing glasses. His dad told him that he couldn’t change being a hemophiliac but maybe he could help with his glasses. (Michael was very far-sighted.) We took him to back to the eye doctor and Michael wore contacts at the age of 8. He was very determined and we helped him change something that we could.
As Michael grew into adulthood, he began to make decisions that I knew were best for his mental health. My late husband and I were always grateful that he was so smart and talented. He found ways to release some of that pinned up depression. He focused on art, music, photography, writing and reading. He always had a few really great friends to stand by his side. He went to college and earned a bachelor of arts degree and graduated with honors.
It’s difficult for me to think about how much stress and mental health issues he has struggled with through the years including depression and anxiety. Finding a job he could do from home; struggling with insurance issues; living on his own away from home; relationships that work and then don’t work. You love them so much and want to keep that helmet on them forever. To protect them from the real life issues that causes depression and anxiety.
As a parent, it is hard to always stay positive and help them as they struggle through mental health issues. There is no one or easy answer. Always trying to find the positive can be stressful as a parent.Â Loving them and listening to them is the best answer I have as a parent. The struggle is real. For them and for parents. Staying in touch with others struggling with the same issues is important and finding support when needed.
Mental health issues are real for our sons/ daughters struggling with hemophilia and bleeding disorders. Stay close and listen. Provide love and understanding. Listen, love and support.
Karen and her adult son, Michael, live in Ohio.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure the accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provider.