My older two children are very fortunate to attend a support group. It is a group that offers support for children who have a sibling with special needs. It has been a great help to my children when addressing the special needs of their younger brother. Yet, what they don’t have is a support group for living with a chronically ill (and in pain) mother.
My children have helped me tremendously through the years. When I was first diagnosed with Mixed Connective Tissue Disease (Lupus and Polymyositis), Reynaud’s Phenomena, and Fibromyalgia in 2003, my children were 6 years and 3 years old. It wasn’t long before I was to weak to walk My neighbor came over and took my bed apart, placing my mattress on the floor. My 6 year old son and 3 year old daughter would lay a sheet on the floor beside the bed. They would then roll me over onto the sheet and pull me to the bathroom along the floor. They fed me and brought me my medications. The full burden of caring for me was on them for a very long time.
So, what about now? Do they need a support group now? With a loud, resounding yell I say “YES”. Let me tell you a little about our day.
First thing in the morning, my now 10 year old daughter comes to wherever I managed to fall asleep at (I sleep on the floor often due to the bed and/or couch hurting to much). She spends at least an hour working out knots in my muscles. She massages, puts pressure on, stretches and does whatever she can to ease my pain and get my muscles working somewhat. She has figured out through the years how to stretch a particular hard to reach muscle. She knows how to stand on me or sit on me to relieve pain and ease knots. She’s discovered how to use her body to help her in this process.
While my daughter is spending the first part of her morning working on me, her older 13 year old brother is attempting to take care of their younger brother. He’s trying to figure out what his 4 year old, sensory stricken sibling will eat for breakfast. He’s trying to convince him to take his daily medications. He’s trying to transition him into the start of the day, all while trying to keep him away from me (he likes to join in and jumps and climbers on me causing more pain).
Once the knots are worked out as best as they can be, my daughter helps me onto the couch in the livingroom. She then brings me a bottle of water, a soda, and my morning meds. After helping me take my meds, she then goes toget her own breakfast (I’m usually to nauseated from the pain to eat breakfast).
Both the older two children knock out chores after breakfast that most stay at home Mothers do. They clean up after breakfast and make sure the common areas of the house are clean. They start laundry and clean their rooms. About the time they are finishing up, I am starting to get to a point where I can move on my own. I start feeling a little less sick and ask one of them to make me something to eat. They then start on schoolwork.
There are several more things my children do in the course of a day that other children don’t have to. My daughter brings me my clothes each time I shower since taking a shower drains me so completely. She also helps me to put on my shoes when I’m unable. She combs my hair for me. Both of the children find items I misplace daily for me. They prepare breakfast and lunch most everyday and assist their father in preparing dinner each evening.
With our finances as they are, and my being unable to drive, the children don’t get to do a lot. They don’t have the funds to buy things they’d like, nor a way to get there if they wanted. Yet, they still help me.
Don’t get me wrong, my children are by no means saints. They get attitudes, roll their eyes and disobey at times. We have the same battles over chores that any other family has.
I am not always observant to their plight. I don’t always notice that, even though they didn’t get the chores done like I would have, they still took care of me and their 4 year old brother all day.
I would love for my children to have a support group that they could go to and meet with their peers. A place where they can talk about their lives, their frustration, and their feeling under appreciated. A place where they can talk about living with a mother whose memory is affected and often can’t speak what she is trying to say. A place where they can talk about how much they have on them, and meet other children in the same situation.
I am truly blessed to have the children I do. My daughter takes over getting our son ready to go to church each Sunday. Our eldest son handles most meals. Sure, the kids give me a hard time about keeping their rules cleaning and having to clean up after their little brother………..yet, they still take care of both myself and our youngest son without complaining.
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