Earlier today, as I was browsing one of the Facebook mom groups I belong to, I came across another mother’s heartbreaking post. Her daughter, a toddler like my own girl, had been battling cancer for some time. All I could think was that she was too little to have to go through so much.
She asked her mom, “I’ve been a good girl. Why did I have to get sick?”
Not knowing how to respond, the mom turned to Facebook to ask for help.
I felt her pain as I read every word of the post, because I probably wouldn’t have known what to say, either.
Three things came to mind when I saw that post. Firstly, I remembered the intense pain my mom went through during her own battle with cancer. It wasn’t an easy fight for a 56-year-old woman. How hard was it for a 3-year-old girl?
Secondly, I thought about my own daughter. Perhaps kids have the benefit of innocence. If they experience pain at an early age, would they be able to take each day as it is? Would they have the capacity to see their battles through the lens of imagination? Up to that point, they’d have no point of comparison with previous experiences yet.
Lastly, I remembered my husband’s condition. Even back when we were still dating, he would tell me of his own hardships while growing up with severe hemophilia. There were times when he, too, had questioned why he was born with a disease, and why of all people it had happened to him.
My husband, Jared, admitted he sometimes felt that life was unfair to him. At times, he would question why a supreme being would not have “punished” those who have committed mean acts in their own lives instead.
When I asked my husband what he thought of the mother’s dilemma I mentioned above, he told me it wouldn’t be easy for him to be in her shoes, either. If our daughter were to ask such a question, Jared would tell her that no one deserves to get sick. Bad things can simply happen to anyone, regardless of what they do or who they are, because that’s the way the world works.
Nowadays, my husband thinks he was given the life he has because he can handle it. He believes that every person has a unique definition of “normal” that is relevant to the life they live.
As for Jared, his “normal” consists of days when he is capable of doing most things, and days when he must rest. On good days, he can be Super Dad, chasing after our toddler, carrying her, rocking her, swinging her around, and doing chores around the house.
On other days, he must take breaks to nurse injuries back to health. And that’s OK, because that’s his life.
I believe the little girl’s feelings are valid. She has the right to feel scared. She has the right to be frustrated. She has the right to express disappointment.
My husband sometimes feels that way, too. He’ll admit “defeat” and tell me to simply let him be. But the next day, he’ll get up and power on.
In my heart, I believe that both my husband and the little girl are beacons of hope and strength. Life is certainly unfair to them, but they keep on moving forward.
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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