Thomas recently had a project at school that required group work over a few weekends. Another mom in the group offered to host the boys (for which I was grateful – I didn’t particularly want a group of five 5th grade boys in my house for several hours over the weekend.)
At the time, Thomas was just getting over a muscle bleed in his back. He had only returned to school for a week or so after missing much of the school year. His part in the group work was to help compose a music number, which he did using an iPad. Thomas brings the iPad to school daily because, otherwise, he develops a bleed in his hand or arm from taking notes in class. He had worked quite hard on the musical number and was pretty proud of himself.
As I dropped him off for the group work, I mentioned to the other mom that he was recovering from a bleed (she’s somewhat familiar with Thomas and his struggles.) I added that he could call me on his cell phone if he started hurting, and I’d come back to pick him up.
It’s a wonder no one had to bail me out of jail that day.
I took a deep breath and replied, “Well, as you know, Thomas has hemophilia. I don’t expect you to understand what that’s like for us. He also has an iPad and a cell phone. He handles both his hemophilia and his electronics very maturely.” With that, I thanked her for hosting the boys, told Thomas I’d see him in a few hours and to call if he needed me.
I really don’t expect others to understand what it’s like raising a child with hemophilia. I don’t expect them to know what’s it like, constantly living with your own cell phone attached at your hip because you never know when you’ll get a call from school or friend that your child is bleeding and in pain. I don’t expect people to understand that I sometimes have to stop everything at the drop of a hat to run off and apply skills in crisis management that I didn’t know I possessed until I had a child with hemophilia. I don’t expect any of that.
But I do expect a little leeway from people and would appreciate a little less judgment over the decisions we make as a family to help mitigate the unpredictability of this condition, and the actions we take to make our lives a little easier.
These judgments don’t come just from those outside the bleeding community. Plenty of nurses have made comments about Thomas being buried into a game during a clinic visit or hospital stay. I say let him play – if we can use “Angry Birds” to distract him during a bleed and avoid a narcotic, then by all means, play “Angry Birds” to your heart’s content. I’ll be the judge of when he needs less screen time — after all, I’m mom – I know best.
Are kids over stimulated with TV, Netflix, DVRs, iPads, Kindles, Playstation, xBox and more these days? Of course they are. Kids should get up, go outside, roll around in the dirt and grass and get some fresh air and exercise. But we need to remember that not every kid can do that, and in my opinion, our kids with bleeding disorders get a pass to play (video games), especially when a bleed is happening or there is pain.
Sonji lives with her husband, Nathan, and three children Nora (12), Thomas, (10), & Natalie (8) in Colorado.
*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.