Nora unknowingly opened a floodgate when she did not share some candy with Thomas one afternoon. He got super moody. I left it alone for a bit, but I could hear him trying not to cry in the backseat of the car. When we pulled in the driveway, I sent the girls inside and asked Thomas what was wrong.
“I don’t know.”
I had a feeling I knew what was wrong. The last year and a half has been the hardest stretch of our hemophilia journey. Thomas’s inhibitor resurfaced with a vengeance. He’s bled uncontrollably a multitude of times and has been hospitalized for birthdays and holidays. His pain has been unbearable and his mobility constantly compromised. He missed the entire first trimester of school this year. As a young middle school student, just as he was beginning to show signs of maturity that could lead to a sense of independence, hemophilia and inhibitors reared their ugly heads and knocked my boy down time and time again.
He was trying not to cry, so I said, “Thomas: Just cry. Scream and cry as loud as you need to.” That was all the permission he needed – he just sobbed. Absolutely sobbed for about ten minutes. I got out of the driver’s seat and crawled into the backseat with him.
I said, “You’ve had a crappy* year, huh.”
“Then scream that out loud, Thomas. Scream, ‘I’ve had a crappy* year!'” So he did…and then he just sobbed more. I didn’t say anything else. I just let him release all that pent up anger and despair.
After about another ten minutes, he started taking deep breaths trying to regain some composure. I said, “Let’s go celebrate surviving this incredibly crappy* year. Do you know what a pity party is?”
“I know what pity is, but not a pity party.”
“Well, a pity party is where we are going to eat cake and have balloons and party hats and noise makers and we’re going to celebrate how much hemophilia sucks. Want to try that?” I asked.
I’m pretty sure he thought I had completely lost my mind. But, with a little mischievous smile he said, “Yes.”
I ran inside and told the girls that Thomas and I were running an errand and we’d be right back. We went to the grocery store and I let him get supplies to make pizzas, cookies, party hats, noise-makers, and balloons. We walked around the grocery store and he realized I was completely into this idea, so like any wise 10-year-old, he capitalized on Mommy losing it. “Can we get soda, too?”
“Sure!” I happily chirped.
We arrived home and he went barreling into the house, excited to tell the girls what was about to happen. The girls were completely confounded.
And then…chaos ensued. We had a blast. We let loose. We popped confetti poppers, threw streamers, blew up balloons and ate total junk. For that hour or so, we laughed and smiled and didn’t think about all the challenges in our past. We celebrated our present. As we started to clean up, sweet little Natalie said, “This is fun. We should celebrate how much hemophilia sucks more often.”
A month and a half later, even after the excess of Thanksgiving, Christmas and New Year’s, the kids are still talking about the pity party. Much thanks to my friend, Lynley, who shared her experiences of having a pity party with her boys every once in awhile. I highly recommend throwing yourself and your family a pity party whenever you might need it.
Hemophilia may have knocked us down, but this was a totally liberating experience. We celebrated getting back up – our survival – not despite, but IN SPITE, of everything this disorder has thrown at us.
*I actually used a word not fit to print. It surely fit our situation though.
Sonji lives with her husband, Nathan, and three children Nora (12), Thomas, (10), & Natalie (7) 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.