My son, Michael, has severe hemophilia B. He is soon to be 28 years old. Wow! That time flew by! I remember the day we found out he had hemophilia. He was 11 days old. We were shocked, scared and ready to take on this challenge life had given us.Â We educated ourselves and our families. We connected with the community as best as we could.Â There weren’t any cell phones or google. We had to search everything on the computer and email other families.Â There is so much more information available now and so easy to access.
Early childhood years were a challenge. Michael had developed an allergy to factor nine and developed inhibitors. His only option of treatment was factor seven. There were ups and downs with many surgeries and in and out of school. Michael graduated from The University of Findlay majoring in creative writing and a minor in philosophy. He is a brilliant young man with many talents; writing, art, guitar playing, podcasting, photography (just to name a few.) He always found a way around the obstacles hemophilia offered and succeeded.Â
Now, he is an adult. Life is full of so many “adult things” to handle, like getting a job, finding an apartment, adult relationships, paying for a car and insurance, going to the grocery store! But with hemophilia comes a few other issues: finding an apartment without three flights of stairs, finding and paying for health insurance, storing factor and sharing your diagnosis in the work force. So many stresses!
Stress and mental health are a very important topic and issue for everyone right now. Living through this pandemic is scary and stressful for us all. I can’t imagine living with a chronic disease and adjusting to our new normal life with all the changes it has to offer. Life with hemophilia has to be so challenging mentally when you are dealing with pains and bleeds on a regular basis. Michael’s bleeds are not typical and he lives with chronic, life altering pain. I think it is important to stay in contact and keep the communication open when your son becomes an adult. Encourage them to talk about their disappointments and fears starting when they are little and after adulthood. There’s a fine line between being a meddling mother and being a mom who will just listen and offer support. There are other options for coping such as journaling and even talking with a professional.Â Parents should watch for signs of depression. Mental health is a topic we all need to educate ourselves on.
We all need a little extra support and stress relief right now. We need to be there for each other and our families. Here’s to a better year, next year.
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.