Infusing Love: Losing Myself

 
I love being a mom. Nothing makes me happier than cooking a great meal for my family, making soup to feed a cold, and even washing and folding their clothes. I am blessed to still pack lunches for one of my kids, while I watch my oldest one pack his own for his day at college. I am more than a little happy that he is still living at home…for now.
For many years hemophilia was just a nuisance in our lives, but when Caeleb’s inhibitor took over, hemophilia was truly an unwanted, obnoxious member of our household. All I wanted was for hemophilia to come and visit, but not ever to stay close by. When Caeleb was diagnosed with a high titer inhibitor, we lived in a rural part of New Mexico. The day-to-day happenings in our home were great as a mom – until we had to pack up and travel three hours to the hemophilia treatment center for port issues or a significant bleed. I felt like my life was ruled by hemophilia and when we did have a stretch of time where things were “normal” or even “boring,” it didn’t feel right. During the past year life has been wonderful as we are in the process of tolerizing Caeleb’s inhibitor. No hospital visits or bleeds, no more wheelchair or physical therapy…I have sometimes been at a loss for what to do:

“What’s it like to not have the clinic at school call a few times a week?”

“You mean I only have to access his port in the morning for one infusion daily?”

“Wow! He is walking and running! He is not in his wheelchair.”

For the first time in years I find that my family is adjusting to a new lifestyle:

• A lifestyle where everyone goes to work and school and comes home for dinner;
• A lifestyle where we all have time to do things that interest each of us without much interruption;
• A lifestyle where a bleeding disorder is not the main focus of our home and now we can focus on our family.

I’ve lost myself over the years of craziness with hemophilia and it’s nice to get acquainted with the woman I have become through chronic illness. I am not wrapped up in numerous infusions, talking to our pharmacist constantly, or scheduling and getting to appointment after appointment for physical therapy and blood draws. I have cared for my son in a way I never dreamed I would have to by being on top of questions and answers for the doctors, stepping out of my “parental box” and looking for solutions and being the strength behind some of the most painful situations watching my little boy suffer.
Call me crazy, but I believe that being a caregiver has made me a stronger person. When people hear the word “caregiver” they automatically think of someone who cares for someone who is sick or elderly. But as a mom I take care of my children…my 9- and 19-year-old sons. My oldest may not need me to wash his clothes or cook his food, but being able to do those things for a while longer makes me happy. My youngest does need me to wash and cook for him, and I even get a bonus by hearing him read comics to me. My children will be full grown adults one day and I hope I am around to love and spoil their children. Being a caregiver has changed my life for the better. Will I ever be too old to care for them? I don’t think so.
Cazandra lives with her husband, Joe, and sons, Julian and Caeleb, in New Mexico.

*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.