I don’t think most people would say that they like to be stuck with needles on a regular basis. I have heard stories of big, manly, tattooed men on the brink of tears when a needle approaches, but those of us with children who have a bleeding disorder know that we have some of the strongest kids in the world.
My eight year old, Caeleb, has developed a debilitating fear of needles over the past few years. It has definitely been a journey filled with fear, frustration, anger, anxiety, and pain (not just for him, but for our entire family).
Over the last two weeks my husband and I have been preparing Caeleb for his first shot of a new Â injectable drug that we are hoping will help conquer his allergy to Factor VIII.Â To prepare for this shot, Caeleb has watched his Dad give himself shots of insulin while we explained that his infusions of factor were into a vein.Â Caleb understands the difference of shots versus an infusion more than most adults, and he seemed to be prepared.Â
When we finally got into our room in the clinic, the hematologist came in, sat directly in front of Caeleb and looked him in the eyes and said, “Caeleb, this shot is going to hurt.Â It’s like pushing peanut butter.”Â Well, at least he was honest. I laid on the bed with my son, holding him close, his Dad at his feet, the hematologist near his ankles. Two nurses were making sure his hands did not get in the way and there was another nurse administering the shot.Â I had a bird’s eye view of what my mighty warrior was facing.
It’s scary being surrounded by people with a needle coming at you! I don’t care if they are familiar faces, it is not in a person’s nature to relax. My eyes were opened a bit during this visit. I had a clear picture of what things truly look like for my son when he is being infused or given a treatment.
As a hemo mom, I am determined one way or another to make sure my son gets his medication. If it means holding him down and letting him cry, scream and fight; I will do whatever I can to make sure he gets his infusion. Knowing that factor bypassing agents are his lifeline, I find myself putting a wall around my emotions for my son’s wellbeing. Some people would think that I must be hard and cold, even unfeeling.Â But the truth is that when you have to weigh what is best for your child against not wanting to upset him, what is best always wins.
My emotional wall came down a little bit yesterday when I was physically on his level and saw the needle coming with everyone surrounding him. I understood his fear a little bit better.
Regardless of that barrier coming down, I won’t stop trying to do everything I can to ensure my son has the best life he can despite his hemophilia and inhibitor.
I won’t stop.
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