The hidden grief I experience as a mother of sons with hemophilia
While sorrow sometimes seems to lessen, it can also appear out of the blue
Imagine a large pickle jar, the kind you might see at a movie concession stand filled with pickles. But inside this otherwise empty jar sits a large ball that’s pressing against the sides and all but filling it. Then imagine that this ball symbolizes grief.
Many believe that grief diminishes with time, but it’s we who grow around our grief. In the beginning, the ball of grief is a huge part of the jar, much as it dominates our lives. As time goes on, however, the ball doesn’t necessarily shrink, but the jar grows in size, much as our lives expand around grief. The ball has become small enough, relatively speaking, to roll freely in the jar.
Though grief remains part of us, we continue to grow and create space around it.
Grief is often associated with a tragic event, such as the death of a young person, loss and trauma after a mass school shooting, or lives taken by a drunk driver. Grief is also a common and too-often ignored emotion that parents and families encounter when they’re told their child is diagnosed with a rare medical disorder, such as hemophilia.
I’m not saying that having a child with a rare, chronic condition is a tragedy, and I don’t consider the hemophilia diagnosis both my sons received to be tragic. My sons, after all, are the joy of my life, just as they are.
But I do grieve for them, I admit. I keep this grief hidden from most, but it does appear at times.
Hidden grief is present but not always seen or recognized, even by ourselves. While we may carry on with daily life, building careers, families, and hobbies, this grief remains tucked away, often surfacing at unexpected moments. It might appear as a sudden wave of sadness, a memory triggered by a familiar scent or song, or an ache that comes with milestones we thought we’d moved past.
A new chapter
This year, my youngest son, Caeleb, started college, and with this milestone, I found a deep sense of grief — and it caught me off guard. It’s not the grief of loss, but it is one of transition, of watching him step into adulthood with all the challenges still before him. The memories of hospital stays, joint bleeds, and surgeries linger in my heart, and I grieve for the ease denied my sons that so many others take for granted. I grieve for what my son has had to endure and the lasting impact it has on his health.
I grieve when I watch my son unload his wheelchair after arriving on campus. Caeleb quickly assembles the chair, gathers his bag, and takes off. I sometimes see people look at him and shake their heads. They don’t understand Caeleb’s mobility issues or his long history of damaged joints and pain.
His academic life has been filled with struggle for many years, so I’m happy to see him enjoying a new sense of freedom at college. But my grief, which had been dormant, resurfaced with Caeleb’s new mobility challenges in this new environment.
I often find myself mourning what could or should have been. I’d hoped my children would excel academically, discover their passions, and approach life excitedly. I don’t want to imply that they aren’t looking forward to the future, but I wish things would be easier for them. The complications of hemophilia have been significant and have dramatically affected Caeleb in particular.
But even amid this hidden grief, I also feel immense pride. Caeleb’s resilience, courage, and ability to rise above what many would consider insurmountable obstacles testify to his strength. While grief remains part of my journey, it’s accompanied by a deep sense of gratitude for the lives my sons are living.
Grief, in this way, isn’t about something being broken. It’s about honoring the complexity of life and recognizing the blend of sorrow and joy that comes with raising children with chronic conditions. Grief doesn’t diminish. But it becomes just a part of who we are, a quiet companion that reminds us of what we’ve faced and how far we’ve come.
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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