My MS Story began when I was a 9 year old child. How is that possible you ask? My mother was diagnosed with Relapsing-Remitting MS at age 19. Having Primary Progressive MS from the time I was about 9 years old and she was 35. I was the oldest with siblings, Lisa (1 year my junior), Mary and Paul - Twins -10 years younger than I. After going through Natural Childbirth with the twins she dramatically spiraled downhill. She came home from the hospital in a wheelchair and never got out again.
Growing up in our house consisted of doing laundry, cooking, cleaning, making sure myself or my sister Lisa was available to stay home with my mom and the twins when they were young if my dad was not home. I got my drivers license as soon as I could at 16 so I could help my dad with the trips to the store, doctors, school commitments etc... I was more of a mother to Mary and Paul than a sister. I didn't get to go over to a friends house after school as I had to get home to sit/care for my mother after the hired daytime caretaker left. And of course be there to watch Mary and Paul. Before I could make plans to do anything growing up I had to confirm that someone would be home to care for my mom and the twins - either my dad, my sister Lisa or a babysitter.
My mother's disability seems to have been an extreme case and at that time there were no DMD's available or any other drugs. Big moments that stand out in her health history with MS are:
- When she could not swallow and choked, turning blue and almost dying before the Ambulance arrived. And then came home with a feeding tube after a long hospital stay.
- A tumor the size of a grapefruit in her bladder that the doctor said where usually 99% cancerous and she was blessed and in the 1% that was not cancerous. A miracle indeed.
- Mom's health was always better and her MS in remission whenever she was pregnant with each of us. So after the twins were born and she went into a wheelchair and I was 10, I asked my dad to please get mom pregnant again. I'm not sure I understood how that worked at age 10, just that dad had to do something about it.
- Years of mom not being able to talk because she could no longer eat or drink anything because any food or liquid would go directly into her lungs instead of her stomach after the choking incident.
- Years of having visiting nurses come in and care for her bed sores, clean her, do her catheters etc...
- Years of that feeding tube pump making a Wrrrrring sound in the background.
- Years of walking into my mom's room during the night to see her lying there wide awake with insomnia and not thinking I should stop and talk to her even if she couldn't talk to me.
- Years of 8-10 times a year hospitalization with Pneumonia or other complications and several close calls. The nurses at the hospital knew us by name and honestly that hospital felt like "home" if you could believe that as we were there so often.
- Years of assuming that because she couldn't talk that she mentally was un-sharp. Knowing now that most likely that was not the case and she must have felt trapped in her own nightmare unable to speak.
- Years of hearing my dad completely exhausted and frustrated - crying in his bedroom asking God "Why Me". Nonetheless, loving her and never leaving her. Keeping her home with us and not putting her in a nursing home, but, having the nurses come to us as needed and hiring a FT caretaker for her. There is no better man on this earth than my father.
- Years of my dad juggling bills and money and having bill collectors call him constantly to pay medical bills. Fighting for years for disability payments.
- And of course Years of me being selfish and not understanding everything I am being forced to understand now.
I wish I understood then Mom what you needed like I understand now. I'm sorry. I miss you. I'm scared. I wish you were here.
My mom's picture is to the right in the sidebar. She was a beautiful, happy, deeply spiritual lady who handled this disease with such strength and faith in God. She always told me that God does not give us anything he doesn't think we can handle. At times I believe her and at time I don't.
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1 comment:
What a nice tribute to your mom. Her story mirrors that of a friend of my parents who died in 1994 from complications due to MS. Seeing what she went through was one of the reasons I was hesitant to date my husband at first, I was afraid to get stuck in such a situation. But we don't choose who we love.
Thanks for sharing.
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