The month of May can be an emotional roller coaster for many. Social media fills up with parents bragging about their children’s latest accomplishments — honor society, college acceptance letters, awards, and recognitions among them. It’s a great thing to have a network for connection and celebration of each other, but when your child is not receiving awards and honors, it can be hard.
Sometimes having a rare disease or chronic illness can put a damper on your plans. From having to change plans as you try to walk out the door for an activity to holding your child back a year in school as a result of missed time in the classroom due to illness, their path has changed and there is not much that can be done to alter it. I’m not saying that having a chronic illness is an excuse for a child or adult to avoid rising to the various challenges. Rather, I am saying that coming to grips with how your child succeeds can be very different from your own expectations. That is not a bad thing.
In my own life, I have seen my oldest son live through extreme bullying while in middle school and high school, and it caused him to spiral into a dark depression. His academic pursuits were not high on his list, but they were on mine. I graduated in the top of my class and never made zeros. I thought surely my children would follow in my footsteps.
I am sad to admit that I have dealt with a lot of guilt and shame for the lack of what I consider “achievement” over the years. I always thought people who were excited about high school graduation were a little crazy. Doesn’t everyone graduate high school? That was my mentality, and the truth is, no, not everyone does. I am extremely grateful that my son did.
I am not one to make excuses, but I have realized that hemophilia is so ingrained in my life that I forget it is a big deal. Not everyone knows what it is like to live in the hospital week after week. Many have no clue what it is like for their child to miss over 50 days of school in one year. And certainly many will never have an intimate relationship with needles the way my family does. It’s just what we do. It is definitely not the norm.
Has hemophilia hindered my children? At times, yes, and with long-lasting effects. Do some with hemophilia and related bleeding disorders succeed, while their disorder is only in the background of their lives? Absolutely. But chronic illnesses bring on many obstacles that can get in the way of what those without similar struggles will never understand.
I know that my sons have great things to look forward to in their future. I’m not exactly sure what those things are, but I do know that in their own time, and with some guidance, they will be successful beyond their wildest dreams.
For those moms and dads out there feeling as if they are not doing enough, give yourself a break, take a deep breath, and know that in the right time things will happen.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.