When I was asked to share my personal experience as a mother caring for a child with hemophilia and a woman living with a bleeding disorder, I was initially more than happy to. I planned to spend a few days considering what I felt comfortable sharing and how I would like to do that. As I was reflecting on my experience, I realized that I in fact did not have a completely successful experience to share. I am confident that when it came to our son’s care, we made the best decisions we could with the help of our care team. As a woman dealing with a bleeding disorder though I could have made better choices. Hopefully by sharing my story I can help women and mothers who are embarking on similar journeys to take a different path.
My journey officially began when I was about 24 years old. I had been married to my husband Tim for about 6 years and we had two beautiful little boys that were the center of our world. At about 18 months old our youngest son Kenneth was diagnosed with Severe Hemophilia A. More testing was done, and it was discovered that I was a carrier and had low factor levels myself. At the time, the fact that I too may need treatment never crossed my mind. My sons needed me, and my husband needed my reassurance that everything was going to be fine. I was exhausted, I felt guilty for passing this condition onto my son and I was terrified to bring him home. How would I care for him properly and my oldest son Tyson who was only three at the time? I remember standing at a distance watching my husband Tim wipe tears from his eyes as he looked down at our son sleeping in his hospital bed. I had to be strong. I put my feelings and fears aside and never addressed them or spoke about them. I withdrew from my support system outside my immediate family and focused solely on my kids and my husband. This is where I wish I had done things differently. Having these unresolved feelings of guilt and fear weighed heavy on me every day. I was scared all the time about Kenneth getting seriously hurt. I neglected my own health and ignored my constant exhaustion, frequent headaches, and dizzy spells. It was not until I ended up having a major breakdown that I realized that I could not continue doing things the way I was. I was suffering from severe anemia and my mental health was in shambles. After spending considerable time pouring my heart out t my husband and my extended family and friends, I finally felt the weight I’d been carrying around for years start to fade. I addressed my anemia and started to receive regular treatment to deal with my condition. I felt like myself again. I became a better wife and mother and was able to deal with the ups and downs of caring for a child with hemophilia much more successfully. I wish I had done this years sooner.
As mothers we often feel like we come last. We are the caregivers and people are depending on us, but we must take time to care for our own health as well. By caring for ourselves we will have the physical and mental health required to care for those that depend on us successfully. Self-care must not be neglected!