It’s one o’clock in the morning and I just finished infusing Thomas for the seventh time in twenty-eight hours. We spent four of those hours in the emergency room for pain management and I’ve heard, “Mommy!” approximately 635 times today.
Â I. Am. Exhausted.
I had to keep Thomas home from school due to a nasty ankle bleed. He was cranky, in pain, and demanding. He was also stoically brave and communicative about his symptoms. I have tried to muster every ounce of strength and patience in my being. The patience wore out in the ER waiting room and I lost it on some random guy who rudely interrupted the admissions official as they collected our information. The strength wore out when I had to break the news to Thomas that we would have to cancel a long-awaited outing for tomorrow. The exhaustion set in as I parked the van in the driveway, the battery died on me and Thomas and I were stuck in the car until Nathan could disconnect the battery and disarm the car alarm from blaring as we crawled out of the van.
I. Am. Exhausted.Â
I am sad for my guy and I wish I could just plain fix it. These days of bleeding and multiple infusions due to an inhibitor are absolutely brutal. I hate to turn the focus off his suffering, I don’t mean to diminish his challenges, but straight up — this is hard on me, too. When he’s bleeding, it’s physically, mentally, and emotionally draining for me. Every bit of energy is just sucked right down the drain.
Â I. Am. Exhausted.
I do think he realizes I’m doing the best I can to make it better for him. I even said to him, “Thomas, I know you are hurting and this whole thing stinks, but I need you to understand I’m doing the best I can to help you. Please be nice to me. Please understand that this is hard for all of us.”
Maybe it’s wrong to lay that on him. Maybe it’s brilliant. I don’t know. All I really know right now is that bleeds are hard on mommies, too.
Sonji Wilkes was born and raised in North Carolina, where during high school, she developed an appreciation for volunteerism and community service. She graduated Magna Cum Laude with a BA in Behavioral Science from the Metropolitan State College of Denver in 2001. Sonji volunteers extensively in the bleeding disorders community and was selected as the 2006 National Hemophilia Foundation’s Volunteer of the Year. Sonji, her husband Nathan, and three children: Nora (11), Thomas (9), and Natalie (7), currently reside 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.