I have one particularly well-meaning friend who whenever complaining about her own kids' woes, inserts the disclaimer: "I know it's not anything compared to what you went through with Rose, but..." But what? Just because my kid has a chronic illness doesn't mean I don't understand your "regular kid" problems.
Hemophilia is a piece of our child's story, not the whole story.
When Rose was diagnosed at age 9 months, my world changed forever. When everyone else was planning their baby's first birthday, I was faced with the unfathomable possibility of my baby's funeral. Through the grace of God, Rose survived. We celebrated by hosting a 1st Birthday Blood Drive in an effort to give back to those selfless anonymous blood donors who saved Rose's life.
Our family dove into the bleeding disorders scene, attending meetings and devouring materials in order to manage what was our new reality. Infusions and bruises and ER visits became part of our life. But baby Rose had bigger things to conquer, like learning to walk, potty training and exploring her universe, just like all the other toddlers.
Preschool was around the corner as were playdates and parties. It wasn't easy educating the teachers about hemophilia or getting the inevitable "she was leaning back in the chair and hit her head" call. We navigated through these milestones with the help of hemo parents who had gone through this before. But the fact that Rose was the only student with hemophilia in school and in our everyday circles, meant that we had also to embrace her "regular" life and allow ourselves to lament and celebrate like other parents.
To all parents out there: you can complain to us about how your young child throws a fit about getting a haircut, that drives us crazy, too! No, it's not as traumatic as a six-stick infusion, but we can relate to everyday frustrations as well. We beam with pride when our little ones start helping with their own infusions, but we also are just as proud as you when our child learns to tie his or her shoes.
Rose is not just a person with hemophilia. Rose is now a freshman in college, and a member of the elite Yale Magic Society. She loves to scooter around campus (with helmet!), recently discovered she enjoys Thai food and is one of the newest sorority sisters in Kappa Kappa Gamma. Rose keeps her ties to the bleeding disorders community by volunteering as a counselor at Camp Little Oak (camp for girls with bleeding disorders), and by continuing to attend chapter events when possible. But mostly she is still a teenager who tests limits and can drive her parents crazy, just like all teens.
I learned long ago that just because your child has a chronic illness, this doesn't spare him or her or you all the other trials and tribulations of growing up. So be sure to seek support through your local chapter. There is nothing like another hemo Mom or Dad to help you through those dark bleeding disorder days. But also seek solace in all parents because the fact is:
Parenting is a tough job for everyone. But we hemo parents "stick" together!
Be safe, have fun
- Shari
Shari Bender has served on numerous National Hemophilia Foundation committees, including First Step for new families and Victory for Women. She cofounded the New York City Hemophilia Chapter and served as its first president. Shari and her husband Stephen remain active and helped raise more than $1.5 million to support the bleeding disorders community. This article is part of a 4-part series Shari is currently writing, "Parenting Tips to Help Raise a Happy, Healthy, and Successful Child with a Bleeding Disorder." Subscribe to NHF Notes to follow this 4-part series
The ideas expressed in this article are the author’s opinion and should not be, in any way, taken as medical advice. You should consult your own doctor if you need any specific advice about treating your bleeding disorder.