As Seen By A Hemo Mom & Daughter

Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.
I wish I could run on the beach with my Dad.
This thought went through my mind as I watched a father and daughter on the beach a few weeks ago.  As I watched the dad and daughter run into the distance, I started to feel sad. I never saw my dad run.  His knees were so damaged from repeated joint bleeds when he was younger; it was very painful just for him to get off the couch most days.
Yes, my father was limited in what he could do, but I never felt unhappy growing up with a parent that was crippled due to hemophilia.  I grew up knowing that my dad had trouble walking and it was understood that he could not make it to my school events.  It bothered me deep down, because over 25 years later I can clearly remember wishing he was at my middle school graduation, basketball games, and track meets.
Fortunately, in the early 90’s my dad had both of his knees replaced.  He still could not run, however, he was able to attend my college graduation!  I remember him walking from his car through Rutgers University huge athletic center to his seat.  I remember that moment clearly, but I cannot remember introducing our graduating class speaker.  Thinking back, I don’t know why my dad never had a wheelchair or scooter to get around.
Lovee_schoolawardLike many “hemo daughters” growing up during the 80’s and 90’s, I have seen the crippling effects of hemophilia on our fathers, let alone the effects of contaminated blood.  I think if we were all put in a room with a psychologist and shared our stories of growing up with a parent suffering from a chronic condition that was worsened by HIV/AIDS, hepatitis and kidney failure, that the psychologist would diagnose us with some form of traumatic emotional disorder.
I know in my own experience, since my dad could not work, my mom worked two jobs while I went to school.  Since I was the oldest, I had more responsibility like cooking dinner and helping my dad care for my little sister.  I tell my husband all the time, I can’t wait on you or make your plate – I did that for my dad and I’m now retired!
As a hemo mom and daughter, it’s incredible to now see how the new generation of children with hemophilia are living a better quality of life.  Now, don’t get me wrong, our community still has challenges like: inhibitors and fighting the high cost of insurance. However, as I sit here today and give my 5-year-old son his prophylactic treatment of factor, I am very mindful that because of treatment advancements (he will be God willing) to run on the beach one day with his daughter.  I feel like I am not just “factoring” him up to avoid bleeds today, but to avoid problems that bleeds can cause in the future.  I want to give my grandchildren something that I didn’t have: a father that is not crippled by hemophilia.
The sixty-year interactive timeline created by HFA, “Honoring Our Past, Building Our Future,” is such a great tool for me to pass that history down to my sons.  My father would have turned 64-years-old June 27th, so this timeline reflects his life!  I can go through this timeline with my 12-year-old son and show him how far the hemophilia community has come for a dose of “clean” factor 2-3 times a week.    Hopefully, as the timeline grows it will include long acting factor products, then to products requiring only a monthly infusion and finally a to cure.
Happy Father’s Day to my dad and to all the fathers out there living with a bleeding disorder!
Lovee’ lives in South Carolina with her husband, Charles, and her children, MaRee’ (16), Marques (12), Laithan and Layla (5).

*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 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 providers.