My family still finds it hard to understand that I have to plan everything and even then there are no guarantees that I'll be able to function on that day. This disease is difficult for others to understand. It is not visible and some days we are flat on our backs and others almost normal. My son used to think i was angry and all he was picking up was pain signals. Our treatments are costly and that takes away from our families too! I don't have the energy or strength to take care of my needs let alone others. For those with families close by that has to be a big blessing. At least now more doctors recognize our illness and there is the Lyrica commercial that talks about fibro pain.
It certainly isn't fair--to you or to them. Of course, when it comes right down to it, no one said anything about life was fair--it is what it is. You just do the best you can with what you've got, and keep the lines of communication open so that as they grow they'll be able to listen and understand more.... and you learn to be grateful for the little things...
"The real secret of success is enthusiasm..." thanks, Walter P. Chrysler. I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!
Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL
Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called
I have been there. The girls are all older now (17 and twins at 19). They were very understanding when I was laid up at times. The girls were 10 and 12 when my major problems started. They still wanted to play and do things with me but understood when I said I just couldn't at that time. One of my daughters has CP and needed additional help at times and another had learning disabilities which I was able to help with her even though I felt to tired to do anything. I have learned that if I need to I can push myself through things to get things done that have to be done. But I suffer afterwords
I went through the same thing when I was 32 (I'm 57 now). My oldest is profoundly Autistic/MR and back then had 25 seizures a day. My back went completely out and I couldn't move for months. I couldn't completely bond with my youngest girl who was just starting to walk. I couldn't carry her. I was flat on my back on the sofa, completely disabled. I just taught her to climb up on my tummy and lay down on top of me so I could hug her. Luckily my family lived close by. And just before this happened, I and 2 other moms started a parent support group for parents of kids with disabilities. Those moms really came thru for me, cooked, cleaned my house (my husband was fairy useless, worked, came home and had OCD, and got lost in his obsessions), shopped for me. It was such a learning experience for me to let go and let God. I've always been a do-er. I became needy. It was humbling. I could only roll off the sofa onto my knees to crawl to the bathroom, do my business, and crawl back to the sofa. But I kept my sense of humor around the kids, saying, "Here I go again, being a slow-poke pony." Then I'd whinny. They'd laugh at me and I felt good I could still make them smile. The girls were 16 and 18 when I was diagnosed with fibromyalgia/chronic fatigue. My youngest really came through for me when I couldn't get out of bed. She took her autistic sister to school (got her drivers license early because of my disability), got her to her class and home again where she cooked simple meals for us and helped me bathe her sister. I learning experience for her (which she resented back then but understands now at age 27). My point: get help! Let your friends and family help you. Keep your sense of humor and share a laugh with your babies. Let them crawl on you but don't let them walk all over you. You are not alone. Your local MHMR or dept of aging and disability can help with your child with autism. You are entitled to that help. Its free. Make some calls. Don't give up hope. You are not hurting your kids by being disabled. You are teaching them what can be done even when you are labeled disabled. I wish you luck and love.
"People will forget what you said, people will forget what you did, but people will never forget how you made them feel." ~Maya Angelou
How have any of you explained to your kids what you are going through so they don't think you are ignoring them or not wanting to play? I'm so tired and in so much pain that I have maybe enough energy to make sure they are fed, taken care of but when it comes to taking them places I just can't. Its heartbreaking. THey are 3, 7 who is autistic, and 9 who suffers from extreme exczema. I try to do crafts and other things but my husband isn't home during the week. So by the weekend I'm so exhausted that he lets me rest. I feel that they don't understand why I must go lay down all the time. I certainly don't want to make their childhood memories be resenting their mom because she never did anything with them. I'm just worried Im not doing enough for them. I've tried to explain but I see it in their faces. Its not fair. Any suggestions?
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