When The Time Comes


Our children face difficult things in their life on a daily basis. We teach them, we guide them and then pray it all works out.
When they are little, we can control situations and speak for them when we believe we know our children better than anyone in the ER. We are the MOM! We have seen that ankle blow up like a balloon and we know what to do. We give the ER nurse the information and tell her what needs to be done. We decline the x-ray and tell the doctor and nurse that our child needs treated. We speak for our children and make sure that everything is done like it should be.
My son, Michael, is 27 years old.  He has had a really tough 2020. Until this year, he had not been in the hospital for over 10 years. He has severe hemophilia B with allergy to Factor 9 and inhibitors.  In January, he had a knee bleed that was out of control. He lives 1 ½ hours away from me. He asked me to come and help him infuse because he was in so much pain. We ended up going to a hospital near him. It was not his HTC or his usual hospital. In the ER, Michael answered all the questions and gave his own history. I sat there thinking, I really don’t need to talk for him any longer. He was admitted for pain control. The hematologist notified his HTC, and treatment and pain control was provided. I stayed at his apartment so I could be close to him and make sure he was taken care of. I know he is an adult, but I had never left him in a hospital alone. He was discharged about a week later.
In February, Michael texted me and told me he thought he had an iliopsoas bleed. He told me he was alright and treating at home. He knew I was working late that night and there was a bad snow storm. I worried about him, but he told me he had things under control. Because he knew I couldn’t get there, he called his cousin who lives near him. They went to the same local hospital ER. Michael told the doctor what he believed was going on. The CT scan proved him right and he was admitted again! After hours in the ER and after he was finally admitted to a hospital room, he let me know what was going on. I’ll never forget that conversation. It started out with, “I’m ok Mom, but I’m back in the hospital. Please don’t freak out.” I realized then that he didn’t tell me that night before because he knew I couldn’t get there.  After I hyperventilated for a bit, I felt so happy and proud! He took total control of the situation and really didn’t need me. I know that he didn’t want to worry me and definitely didn’t want me to travel in the weather.
I felt a lot of different feelings after that. I was so happy and proud that he could do this on his own. No one knows better how they feel than our children. We need to sit back and let them talk, even when they are young. We can be their voice when they need us to, but the day will come when it is all up to them. It’s a good day but a sad day. They grow up and learn to speak for themselves. I know my job as being the person who speaks for my son is gone. He speaks for himself and I couldn’t be more proud.
So, let them talk and share their pains and feelings. The day will come, way too soon, that they will be an adult and need all the guidance we have given them. We will always be “The Mom”, but we will also get the call that they have handled it all on their own. It’s a bitter sweet moment, but certainly a proud one.
 
Karen and her adult son, Michael, live in Ohio.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure the accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provider.

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