One of a Chronically Ill Parent’s Worst Fears

I had a pretty good Mother’s Day. Jacques made chocolate chip pancakes and other goodies and Grant came over and of course there was Tyler with his precious Mother’s Day gifts! I had hoped to be able to go for a walk after brunch but I was too nauseous.

With me being nauseous since September, Tyler has had to put up with a lot. I’m in bed a good deal of the time and I usually nap for awhile to sleep through my upset stomach. Sometimes I can’t take him to Tae Kwon Do so Jacques takes him and sometimes I can’t bring him to school. It’s been a long time since I haven’t been queasy and able to do something with him, since February in fact. Sometimes he lies in my bed with me, just to be close to me, even if I am sleeping.

Yesterday Tyler had his last night of religion classes. There was to be a mass and then refreshments to mark the end of the year. Even though I was in bed when Tyler came home from school I guess he thought I was coming. Close to the time when it was time to leave he told me to get out of bed and get ready but I told him I was too sick to go.

It was the first time Tyler ever went hysterical over me not being able to share something with him. “You’re always sick!”, he said. “You’re never able to do anything with me!”

Tyler was so upset, I promised him I would try harder, that we had the summer coming up soon and we would have fun at the pool and doing other stuff. That seemed to make Tyler feel better.

But to be honest, I don’t know if I will be able to keep those promises. It’s easy for someone to tell me to suck it up and get over it, but they are not living in my body.

I’m scared to death that I will disappoint Tyler. Sometimes just standing up is out of the question. What will I do?

Tyler came home early from religion class because he told the teacher his mom was sick and he wanted to be with me. He apologized profusely for crying and yelling but really, why should he apologize? “I know you didn’t ask to be sick”, he said.

I’m worried that I am scaring Tyler for life. That these will be the only memories he has when he looks back on his relationship with me.

Tonight I am determined to take him to his Tae Kwon Do class. This means sedating myself so I can sleep through the nausea and drinking coffee so I’m not too groggy from the meds. I will focus only on getting him to this class. I have to.

Are your kids at the point where they resent you and your illnesses? How did you handle it?


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About mamasick

Emily Cullen is a pen-name. I suffer from chronic illnesses and diseases which include Bipolar Disorder, Asthma, Diabetes and Fibromyalgia. I had battled Lupus and Rheumatoid Arthritis but there is no longer evidence of me having these diseases and my Rheumatologist has declared them to be "burnt out" of my system. I am separated from my husband, “Grant”. Our son, “Tyler” was born in September of 2006 and suffers from tics and Obsessive Compulsive Disorder, and is delayed in fine and gross motor skills. In my blog I seek to let sick moms know that they are not the only ones going through this, and to educate people about what can happens when one becomes catastrophically ill. I also strive to break down stereotypes of what a “Welfare Mom” is like. Anything that I have gone through due to being sick, is written on the pages of Mama Sick.
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8 Responses to One of a Chronically Ill Parent’s Worst Fears

  1. Elizabeth says:

    My kids don’t resent me yet, but I have heard “but you always have a headache” (aka migraine from hell)
    I never promise something I can’t absolutely deliver on. I do however promise that I will try very hard to be able to do xyz. Or promise that my next good day is all theirs and we’ll have fun. I also try to find things that I am able to do for short periods of time even if it makes stuff worse later just so they can be a kid.
    Unfortunately and thankfully, my kids have only known this me, they didn’t see me when I could run and play and crank the music loud for a spontaneous dance party.
    Good luck. I’m sure as my boys get older I’ll hear the same things. But while your son is frustrated by the situation he also loves you and knows you didn’t choose this life

  2. mamasick says:

    I know you’re right about him still loving me, Elizabeth, but I know I shouldn’t have made those promises. The good days are just too rare. I do get a nausea break a few hours during the day, I guess that’s when we’ll do stuff!

  3. Bunny says:

    I wanted to let you know what helps me when I am feeling very nauseous. (I frequently get nauseous due to chronic pain — and also from migraines.) My doctor gave me a prescription nausea medication called zofran. Also, ginger chews, ginger candy, ginger tea, ginger gum – anything with ginger lol! I also used to keep coke syrup on hand – I am thinking maybe regular coke would do the same thing – but make sure to stir out the bubbles first (because carbonation may make the nausea worse!)

    • mamasick says:

      I’m drinking a ginger ale right now, and I do have ginger candies! I have coke syrup too. I’m on a Rx for the nausea that doesn’t help too much. The problem is that I can’t be on certain nausea drugs because of the meds I am taking and there weren’t too many choices.

      • bunny says:

        There are so many drug interactions. 🙁 . . . I wonder if Sea-Band Wristbands would help at all? I know some pregnant women swear by them. (It doesn’t only work for sea sickness.)

  4. Giftbearer says:

    I’ve found that creating special bonding time with your child even if it’s done lying in bed often makes up for what you can’t do in the way of going out. There may be quiet activities you can do with your son that will ultimately mean as much to him as your going to his extra-curricular activities. It’s admirable that you want to go to these, but it could make it harder for you to function and thus less available for the days following.

    When my son was younger and I wasn’t able to go to all his games I developed some games I could do with him indoors or we would watch a movie together, read, etc. We used to play scrabble quite a bit when he was younger and it became a regular thing that we both looked forward to.

    To this day (he’s now 32 years old) we have a very close relationship, and I also have found that because he also has health problems that brings us closer together too.

    Talking about these things can be a teachable moment and your son will probably come to understand that just like he has certain limitations so do you, and he’ll be able to empathize more and more as he gets older and know that what’s most important is the love between you; not required that you show your support the same way as other parents, but the quality of your time together.

    I can remember many times when my son and I were snuggled up in bed, talking about memorable experiences, playing scrabble, or checkers, and later, video games, or watching movies, listening to music, etc…and in the end he really didn’t feel like he was missing anything.
    Giftbearer´s last blog post ..PMC Bracelet, Fine Silver, Woodgrain Textured, Bezel Set, Opal Bracelet, Budding Vine, (Number 4) by Giftbearer

    • mamasick says:

      Thank you so much for your very kind words and advice, Giftbearer! We do a lot of reading and watching videos in my bed and I do make it to his most important stuff like when he tests for a new belt in tae kwon do. I think in time he will realize that I am doing the very best I can for him.

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