It is a common refrain to hear medical professionals comment on how well Logan does with his infusions. This is usually echoed in a, “He is such a champ,” or “How did you get to be so brave,” or the sadder version, “I wish my older patients were this good.”
I am proud of Logan; I also think he is a champ and super brave. But it also makes my heart hurt a little when medical professional’s talk about the apparent lack of bravery in other kids. There is no need to compare my child to another; whether good or bad. I feel that we, as caregivers and providers, cannot completely understand what are kids are going through. For some of us, we don’t actually live with a bleeding disorder.
As adults, we forget that we are not experiencing the pain. We wish to take away the pain from our children; we plead to switch places with them, but we cannot. Kids need to walk that road, they need to learn when to grin, and, when to freak out or throw a fit.
As parents, we can teach our children to sit patiently as we stick them with needles, but sometimes our children require the space to decide that today this whole process just sucks. Because, frankly, it does.
I have never kept track of the number of infusions Logan has received. I could go back and count but I don’t have time for that; I know for certain that it would be a lot, including the constant drip of factor he received for the first two weeks of this life. At the age of four months he was diagnosed with an inhibitor and we quickly began Immune Tolerance Therapy (ITT). We stuck a needle into Logan chest every day for over two years, and now stick needles every other day. Most of those days he sits still and does not move. He looks around but seems indifferent. But it isn’t indifference — it is familiarity to have a needs go into his chest.
But what happens when the familiarity does not override the pain, the fear, the “but mama it is sharp?” What happens when your kid begins to fight, kick, cry, or talks constantly about the scary sharp point? It happened to us last week: The familiarity wore off and the reality set in. This is life. And as I battled the screams, kicks, and tears… I gave up. Deep inside, I wanted to scream. I wanted him to sit patiently and get his infusion like he had done the countless times before. I wanted to scream, “Why?” But I didn’t. I set the needle down. I held him. I told him that I loved him. And that today we didn’t need to do factor. That in this moment, what mattered was that I heard his feelings and that I was not going to force him to take his factor because that does not solve anything. Just because it went well the day before does not mean that today it won’t be scary or too much to handle.
Let’s remember that even though our kids are seemingly familiar with needles and pain, we should also let them know that it is okay to be upset and scared to not want to do it anymore. At least, once a month I am over it all too. I am tired of the process, the thinking, the being two steps ahead, and the pain and fear in my kid’s eyes.
But I also need to remember that Logan is brave. That he is learning to be brave in a way most children will never experience. He is learning what his emotions are: he’s learning it’s okay to be sad, and he’s learning a level of compassion rarely seen in kids. I take pride in that. I take pride knowing that in the face of everything he is happy and secure, and it doesn’t matter that he is better or worse at taking factor than another kid. He is his own person and we handle what today brings us.
Logan taught me this after our heart-to-heart talk last week. After some TV time and one too many M&M’s, Logan very bravely told me “I’m ready for my poke now.” We all need a little freak out from time to time. In the end, though, he got the freak out and the factor
Emily Boyer lives with her husband, Geoff, and 3-year-old son, Logan, and 1-year-old son, Ryan, in Minnesota.
*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.