Parenting a Child with Hemophilia is a guest post written by a mother
who has a child withthis blood disorder. Her words are inspiration and important for other parents.
Jennifer Dunaway, the mother of a son with hemophilia, has kindly written the guest post below. My great thanks to her.
Coping with a Child's Hemophilia
When I was first told my son had Hemophilia, he was only 9 days old. Every parent wants a healthy, beautiful newborn baby, but that is not guaranteed. Sometimes you must learn to accept what is given to you, appreciate what you have and make the best of the situation.
After months of denial and finally acceptance, I dove into learning all I could about Hemophilia. Knowledge is power, and I desperately wanted control over the situation. I couldn’t control that he had this disorder, but I could control how I dealt with it.
I became an expert in describing to ER doctors how hemophilia is treated; most did not know. I bought books for my son so he could understand at his level what he had. I reached out to other moms, the local Hemophilia Association,( www.hemophilia.org) all to gain knowledge, understanding and why it wasn’t the end of my world as I knew it.
Hemophilia is a hidden disorder; my son appears completely healthy and acts that way most of the time. I have to educate others on why it can be deadly if he doesn’t get his medication. I also became an expert in portocaths*, specialty drugs, and insurance coverage, infusions, veinous access and how to poke a 5 year old with a needle every other day. I did not want to, but I had to gain the upper hand over this and to show my son that it is manageable, doable and would not hold him back.
He sometimes asks why he has this and complains about it; I tell him we all have challenges and problems and this is one of his challenges and it will make him braver, tougher and stronger than he already is.
*A portocath is a small, circular device doctors place under the skin. It has a small tube leading to the bloodstream to make it easier to have access to a vein.