I have been “Infusing Love” into my son Marques for the past 18 years! I have not only been infusing him with factor, so his blood clotting levels are normal, but I have tried to infuse him with the education he needs to live a long life with hemophilia. I pray!
As hemophilia moms, we have to admit we take on a lot of responsibility having a child with a chronic condition. From the moment we were told we had a child with a bleeding disorder we have coddled them to ensure they had the best hematologist, best medication, best insurance and stayed doing the safest activities. We have taken them to every required HTC appointment and have called the doctor with every issue or question. I also have encouraged Marques to get to know others with hemophilia and participate in our local chapter activities. My personal goal as a hemophilia mom was to ensure that my son lived a better life than my father, who also had hemophilia.Â Â
However, now that my son has turned 18, all the decisions that I made for him are now his to make. A few weeks ago, he needed to get a physical to play basketball his senior year of high school. Of course, he needed my help to schedule an appointment because I have always handled these appointments. He had aged out of seeing his pediatrician and we needed to find a new doctor. I asked him, “so what kind of primary doctor do you want, male or female? young or older? How far do you want to drive?” My son didn’t care – he just wanted a doctor’s signature on his physical form so he could play basketball.
I explained to him, these are the things you should think about when selecting a doctor and most importantly they are part of the same healthcare system as your hematologist so they can easily share your medical records. I have to admit that conversation made me panic a little. Did I prepare him enough to take over his medical care?
He made the decision to just use the same primary doctor as his dad, mostly because it was easier. My son completed his own new patient paperwork, I gave him his insurance card and he drove himself to his first doctor’s appointment without me!
The moment was not lost on me! He went to a doctor’s appointment WITHOUT ME! He didn’t even call with a question. Then when he came back, he wouldn’t even entertain my questions.
I have to trust that over the past 18 years I have prepared him to take care of himself. I have to trust that he can talk to doctors and advocate for himself. I have invested a lot of time as a hemophilia mom into his care, so I have to assume some of it was absorbed! I know that we have built a strong enough relationship that he knows he can still come to me when he needs my guidance.
So, this brings me to the realization that I reached a new level as a “hemo mom.” I have an adult son with hemophilia. Over the past seven years I have shared my Infusing Love: A Mom’s Blog stories with you, but now Marques is an adult and his experiences are his to tell.
Also, I have come to the realization that these specialty pharmacy delivery boxes with medication and supplies that come every month are his to start unpacking as well! That may be the best part!
Lovee lives in South Carolina with her husband, Charles, and her children, MaRee’, Marques, Laithan and Layla.
*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.
Word From Washington