Recently I was telling my Mom that if I could do it over again, there would be a lot of things I’d do differently. I think lots of parents feel they would do better the second time around. I only have one child, so I never got a do over, “mulligan”. Of course, I’m kidding, but it is true I would do quite a few things differently.
I think many mothers who are carriers shoulder a lot of guilt. For years, I thought Tyler, my son, had a spontaneous mutation which caused his bleeding disorder. Technically, I was the one born with the mutation that made me a carrier of hemophilia which I then passed on to him. We had no family history, so this diagnosis was a surprise to all. I really didn’t think much of it until Tyler had his first anaphylactic reaction and we were told he could not be on prophylaxis due to his inhibitor (Tyler has severe Hemophilia B.). This is when I think the guilt kicked in. The more complicated his case became, the more guilty I felt. Thus began years of spoiling and coddling.
It started with little things. I would say, “when he’s not bleeding, I want him to enjoy his time playing.” So nope, I didn’t make him do chores. I bought him so many toys so he’d have “some happiness” in his “hard life”. Then came the elementary school days and Tyler had mastered playing my guilt and, let’s be real, laziness too. It was easier to do things myself than argue with him, but I used his hemophilia to justify my actions to others.
Looking back, I was doing a huge disservice to my son. Hemophilia became the excuse for everything. Once kids are in school, they quickly learn how an internal bleeding episode which can’t be seen is an easy out for many things. This is where I feel I really let Tyler down. I wish that I would not have babied him so much and empowered him more. I thought I was helping him by getting him out of school days and assignments, but it turned out at times to be more than needed. I’m not saying that he didn’t have major issues for which he needed to be on bed rest and receive lots of love and support. However, I never found a balance.
So now Tyler is 20 and apparently he CAN do his own laundry because he shows up in clean clothes. He DOES clean at his place, but not because he learned from me! Our biggest issue is school. I advocated for such an amazing IEP/504 that he got off easy in high school. He had so many amazing teachers who loved and supported him and bent over backwards. Everyone was helping which required little from Tyler. Now he’s in college and I feel I did too much for him. At times he has struggled standing on his own two feet. His freshman year was rough because I decided he needed to be his own man, yet I hadn’t equipped him with the tools needed to do so. Now he’s a sophomore and he’s doing a much better job balancing bleeds and communicating with professors.
If I could do things over again, I wouldn’t have been such a “s’mother”. I know my friends will laugh at that statement because I don’t know if I truly could have stopped. But at least I know where it began and can write about how I’d do better. Babying these kiddos out of guilt or fear does not help them. If they are not having a bleed, of course they should do chores. Homework must be done and in class assignments not dismissed due to a bleed. It sounds uncompassionate, but it will bite you in the tushie later. I’m sure all my friends and neighbors will laugh that I’m acknowledging this now! I’d love to have a mulligan in the hopes that I’d actually do better.
*Disclaimer: Tyler did miss 100/180 days of school his freshman year of high school with compartment syndrome so I’m not dismissing his horrific bleeding history. Please know I’m not a monster.
Check out my Facebook page: Blogging About Bleeding Disorders
Blogging about Bleeding Disorders 