I often get caught up thinking about things I did not do for my sons, who have hemophilia. I worry about the many deficiencies I have, and how they affect my sons’ lives. Dealing with a bleeding disorder is more than enough to worry about, but do they feel like I contributed to the problem?
I suppose I’m not the only caregiver who suffers from feelings of guilt about what I might have said out of anger and frustration, or what I might have left unsaid. I fear that my boys will look back and say, “If only Dad would have been more caring.”
While I want to be truthful with them, I do not want them to know that sometimes I did not want to spend another night at the hospital. I wanted to show them my love without struggle or imposition. When I felt distraught, like I had nothing left to give, something deep within me gave me the strength to overcome my sense of desperation and focus my attention on their needs. My struggles to solve problems and get back to normalcy paled in comparison to the support that my stinky boys needed.
The truth is, they have hemophilia, and I do not. I will never know what it feels like to have a spontaneous bleed into a muscle or a joint.
My youngest son, whom I call “MacDonald the Younger,” told me, “It is like many needles poking into my skin, all at the same time. It does not stop, but keeps poking me. It hurts all the time.”
I sat beside him, giving him the best supportive face I could muster. Anxiety boiled beneath the surface as I bottled up my frustration from being unable to fix the problem. I hoped that my struggles did not cause him to blame himself. I did not want him to take on my issues as his own. He needed to know, and still does, that his daddy loves him and continues to be a calming presence in his life.
I catch myself to make sure I do not spend much space in the “if only I would have” universe. During the worst moments of a bleeding episode, I remember that I did the best I could, even if I didn’t always respond correctly.
When my son screams, my natural reaction is to move heaven and earth to get him to stop crying out. In my frantic search to find an answer, I might fail to see his immediate need. He needs my assurance that a bleeding episode will pass. Of course, he can’t understand that in the middle of an event. He needs my love, not my anxiety.
I must remember that I am human, and I stumble. I try to find ways to bring myself back to the center. Some people walk or run to gather their thoughts. I find strength in remaining still and meditating. I listen to my breath and look inward for the courage to do the next right thing. I bear my sorrows and anxiety in prayer, and by throwing my feelings out into the universe, a moment of clarity sweeps over me. I find peace.
Once not so long ago, my oldest son and I visited on the phone. While we talked, something came up about a struggle he had regarding infusions and needles. I told him I apologized for the anger I showed in moments of frustration. I said, “Son, I wish I had given you more help and less struggle.”
He responded, “Dad, I knew you wanted to get the medicine in me. I didn’t think you were upset with me. Thank you for wanting to help me.”
All this time, I had beaten myself up about the way I acted when in reality, he had been grateful. I hope both of my sons know how much I love them and want the very best for them.
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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