Stress is defined as a state of mental or emotional strain or tension resulting from adverse or very demanding circumstances. As parents we know stress well. It almost becomes like a good old friend that you have reconnected with. It seems like we can’t escape it but, we can only minimize it. Raising a child is no easy task. Toss a bleeding disorder in the mix and it makes it even more difficult.
In terms of Nicholas’s hemophilia, he is well managed. We have had very few issues (knock on wood) and at times we almost forget that he even has hemophilia. It is not at the forefront of our minds like it was when he was a baby. He can tell us when something isn’t right and we can act fast.
Sending Nicholas to his first day of kindergarten increased my level of stress. I’ve learned since then, that in order to minimize my stress, I make sure that I have open lines of communication between Nicholas’s school and myself. I am always just an email or phone call away. I am always available to answer questions and help when I can. I hear from the school nurse on a regular basis. Sometimes it’s just that he came into the office for something minor and she wanted to let me know what happened. We have been so fortunate; my anxiety doesn’t rise when I see the nurse’s number on my phone anymore. Until that one day when it all came flooding back….
My phone rang and I noticed it was the nurse. I answered it and when I heard her voice, I knew that this wasn’t a “normal” visit to the nurses’ office. Nicholas had fallen at recess and hit his head. I immediately went through the time table of days. It was Wednesday late morning; he had last been dosed on Monday morning and he was due for his next prophy dose on Thursday. I knew I had to get there as soon as possible.
I think I made it to school in less than five minutes. I walked into the office and Nicholas started to cry when I saw him. I could see the huge goose egg on his forehead. I knew he was definitely going home with me because he needed a high dose of factor. He hadn’t had any issues with vomiting or loss of consciousness like is sometimes seen with a head injury but, he still needed factor. We walked out of the office to go and get his backpack to head home. He stopped in the middle of the hallway and said, “Whoa.” I immediately thought that was strange. He shared that he sometimes gets dizzy when he wakes up. Wakes up? He hadn’t been asleep. That was strange as well.
At that moment, I knew we were making the schlep into the ER! All of those new-mom emotions started flooding back. I was sweating, but not hot, I was turning beat red and breaking out in blotches on my chest. These were all a result of stress. I had to somehow get myself under control in order to keep him calm. I did everything I could to calm myself down. I got him home and went into robot mode. I had made sure I called the HTC from my home so, I wouldn’t have to wait in the ER and to get dosing recommendations. I packed up a bag and rolled on to the ER after giving him a good large dose of factor. On the way, I prepped Nicholas for the ER as best as I could. I shared with him that they were going to “scan his cat” and check everything out to make sure he would be ok.
After a few hours, a clear head CT, and some bloodwork, we were on our way home. He was diagnosed with a concussion. As a parent of child with hemophilia, this diagnosis, while so very common, took me by surprise. I wasn’t prepared for it. I was prepared for a head bleed. Due to stress, I went right for worse case scenario.
Fortunately, Nicholas has fully recovered and is doing well. While the concussion was not related to the hemophilia, this event was just a reminder that you can never be too comfortable. Hemophilia is unpredictable and can change at any moment!!!
Carrie lives with her husband Mark, and 6-year-old son, Nicholas, and 2-year-old daughter, Aleesia, in Maryland.
*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.