The joy of watching our children start a new chapter of life
As my son moves into a college dorm, I feel both excitement and worry
Every person is a walking compilation of stories that make up their book of life. As the mother of two sons with severe hemophilia, I have the privilege of watching their books develop. One of the most anxiety-filled chapters was when they first went to day care. Memories of little backpacks and tearful goodbyes are cemented in my mind, though the tears were soon replaced with excitement and joy.
The chapter I’m experiencing now is taking a child to college. My youngest son, Caeleb, just moved into the dorms at his university, three hours from our home. Caeleb’s journey with hemophilia A and an inhibitor has involved great physical pain and limitations, which have also taken an emotional toll. While his current treatment keeps him from bleeding into his joints, damage to his right knee and ankle from past bleeds remains problematic.
Instead of wondering if Caeleb will find friends and participate in extracurricular activities, I’m worried about his pain. While he enjoys riding his bike, he can easily overdo it. He does have a manual and a motorized wheelchair he can use, yet my worry is still overwhelming. My husband continually reminds me that our son will figure it out.
This chapter of Caeleb’s life is heavier than his preschool days. When he was younger, I educated his teachers about hemophilia. I taught them how to identify a bleed and, most importantly, to listen to my son. I didn’t want anyone to be afraid of “the boy with hemophilia.” But that boy who once clung to my leg is now a 19-year-old man experiencing life on his own. I didn’t realize how difficult it would be to let him go. Now It’s up to him to advocate for himself.
Caeleb has his medication and supplies on hand, but will he administer them accordingly? Will he neglect his care? When he was living at home, he wasn’t always compliant. When it comes to treating his hemophilia, will he have to learn the hard way?
These questions and fears race through my mind, and pangs of dread hurt my heart. I’m asking “what if?” about every possible scenario. But isn’t that what most moms do?
When Caeleb was admitted to the hospital in his elementary-school years, I immediately went into “what if” mode and planned for multiple scenarios. At the time, my oldest son, Julian, was a teenager, and my husband and I were both working. The logistics of a hospital stay are exhausting, but there’s also the physical strain of staying awake and alert, and the emotional strain of seeing your child in pain and feeling helpless. But my mom powers went into action.
Mentally, I’m still in that mode. But in reality, I’m no longer in control.
A reminder for other parents
To other parents of children with hemophilia, I understand your fears. I feel your anxiety. And I know how those hot tears that stream down your face (no matter how hard you try not to cry) feel when you see your child walk into school on the first day. After almost 30 years of parenting two sons with hemophilia, I do have a bit of advice.
Sometimes there’s no such thing as “one day at a time.” We’re often taking life one breath at a time.
We’re witnesses to the rich, beautiful chapters that our children add to their books. Some chapters are shorter than others, but often it’s their beginning that’s most memorable.
During this back-to-school season, let’s take a moment to appreciate each child’s unique journey. Whether it’s their first day of day care, kindergarten, or college, let us be the proud spectators with a bowl of popcorn in hand.
Celebrating new friendships, favorite teachers, and subjects that stir their hearts is a joy as a parent. These are the discoveries that shape their chapters.
The best part is watching them dream and conquer the world, one first day at a time.
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, and are intended to spark discussion about issues pertaining to hemophilia.
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