My Son’s Ability to Think Ahead Is a Sign of Independence

Sometimes a person must learn a lesson the hard way before making changes in their life. My youngest son, Caeleb, is 15, and he is discovering some truths about his body. Due to extensive damage in his right knee and ankle from hemophilia, simple things such as running and walking are not always easy. 

Caeleb visited friends over the weekend, and when I picked him up, he told me his Fitbit registered over 16,000 steps. His daily goal is 8,000 steps. I asked him how he was feeling, and he said he was OK — just tired. Then, he shocked me. Caeleb told me he was glad that he had taken some Tylenol in his pocket in case he needed it. 

I witnessed my son thinking ahead. Hemophilia was the center of his life for several years, but over the past five years, it has moved further down on his priority list. Of course, his bleeding disorder should easily be at the top of the list, but it no longer dictates every move he makes.

Caeleb thought about what he would be doing and knew from experience that in keeping up with his friends, he might risk aggravating his joints. Because he thought about what might happen, he was prepared.

It is a moment that makes a mama proud.

The lessons that parents teach their chronically ill children are repeated daily — sometimes, several times a day. Over the years of teaching my sons how to manage hemophilia, I often felt as if a brick wall would be more receptive than my boys. I am glad I did not give up.

I am the kind of person who would rather do something myself so that it can be done the right way, which translates to my way. While it may be easier for me to do the work, it does not help others involved. When it comes to teaching my sons about managing their bleeding disorder, I have had to sit back and let them make their own poor choices. 

When my oldest son, Julian, was 15 years old, he ordered his factor and supplies. I would give the complimentary nudge, and he would follow through. One time, after asking him numerous times to place his order, he ran out of factor. On a Friday afternoon, he developed a minor bleed and did not have factor. Fortunately, he was able to treat with RICE therapy and realized his mistake. I knew that if it was critical, we could get to the emergency room, so I let the situation unfold. He has never forgotten to order factor again.

While letting a child run out of factor is not the best option, it was a lesson well learned. In Caeleb’s case, he will live with chronic pain throughout his life. Knowing that he can look ahead gives me great hope for when he leaves home.

Teaching lessons is hard. Repetition is a great way to help children learn. When they understand the importance of caring for their condition, it makes the frustrating times worth the struggle. 

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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.