They have had more responsibilities around the house. I can't clean like I used to. I can't mow or do yard work like I loved to do. They really don't complain much with the extra chores. In fact, when I am vacuuming or washing dishes and start to get fatigued, one of my kids will say "Mom, you are getting tired and your face is red. Go lay down and I will finish it.". Pretty awesome for a teenager to notice symptoms and volunteer to finish a chore.
Ya know the days when the pain is terrible, the fatigue is kicking your ass or even when the depression and anxiety is up for no apparent reason... Ok, I will admit, sometimes I am not nice. Beeee-itch if you will. I know that I am hateful at times. I REALLY don't mean to be. Just some days, I can't handle the pain or the fatigue. I hate when I get like that. It is not their fault but I think they know, by now, that it is part of the illness. They have learned when to leave me be. I have even heard Sis say "Mom is not having a good day Jake, leave her alone. She is resting.". I Hate it!
I know that Sis worries when she has a softball game if the weather is going to be cool enough for me to go. I try my damnedest to make it to every game. Crappy part is her games are usually in July. July is tricky in Ohio. It can be 100 degrees or it can be 65 degrees. This past year was awesome! You actually had to have a blanket at game because we were so cold in July. That's Ohio for you...50 degree evening at the ballpark in July!
I do know the most important aspect that has changed in my kids' life is them wondering if I am dying. My children have come to me with tears in their eyes asking me that very question. (This was during the time when I just stopped working and it took everything I had to walk 15 feet to the bathroom.) This broke my heart. It broke my heart to know that my kids were hurting and I was the cause of their pain. We sat and cried together. I explained that I can understand that they might think I was going to die. This is the first time that physically my symptoms got the best of me. I reassured them over and over but I know that they still are worried.
Some days I feel like I am a bad mom. I feel so guilty for many things. Guilty because the "bad" pain days I snap at them. Guilty because I tend to isolate myself more . Guilty because I cannot do what I want to do and that affects them. Guilty because I am the mom and I am the one who should be doing the cooking, cleaning, working, going on vacations no matter what the temperature is outside. I feel guilty when I have to say "How much is it?" or "We only have X amount of money, find something a bit cheaper.". I know that money isn't everything and that it is a good thing for a teenager to learn but it still sucks and I feel guilty.
After all this being said, I understand that it's not just about me. My kids are living with chronic illness too. I am so very proud of my kids. I am impressed that they jump in and help. Find compassion and love. Having my back when I need it. (Sis demanding the doctor that she needs do something!) They find forgiveness when I am snappy, cranky and hateful. They are truly, truly amazing kids. They must have been raised right!!
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