“Are you feeling better mommy?” this is a question I get asked almost daily by my 4 year old. I used to just say no, I’m not. She kept asking though, and it’s sweet, but I started to wonder what her meaning of “better” was. So, I asked her; “what would it mean if I felt better?” her reply hit me, and hit me hard. “It means you can pick me up, then we can go to the park or gym and play.” <Insert me trying not to cry>.
What does it look like to be disabled mom? For me it’s…
- A sad and confused toddler just wanting mommy to play at the park or walk behind her play on her motorcycle.
- A husband getting upset and disappointed because yet again date night was canceled.
- A friend getting sick of asking “how are you feeling?”, because they get the same reply each time “tired, sick, sore etc”.
- A Parent calling to check up and feeling helpless that they can’t help their daughter feel better.
- Siblings not knowing what to say or how to say they care.
- Me, feeling the loss of hope, seeing the sadness she causes others, the sense of despair.
I’m sick every day, all day. I don’t get a day off from being sick, no vacations. My body doesn’t say “ok, so today you will be 100% fine, but watch out for tomorrow, tomorrow will suck”. It doesn’t work that way. Some days I will feel better than others, but never a day where there is NOTHING going on, there is always something.
I have always loved makeup, but the reasons have changed over the years. When I was younger, I liked it because of the colors and it made me feel pretty. Now, it seems I like it and wear it like war paint. It covers up my blotches, makes my eyes brighter, and covers the bags of little sleep. It’s a mask, and it can hid how I feel. There are days that sitting up is a challenge and takes most of my energy. So if you see me with makeup, please don’t assume I’m not sick or in pain. I am, I just want to cover some of it up. I just want to look “normal”.
I want to say sorry. I want to say sorry to my family, my friends, and to you. And this is what I want to apologize for:
To my youngest: I’m sorry I can’t always be there. When we go out, I have to use my cane, or a wheelchair, so places are limited. I’m so sorry that I can’t lift you up, I can’t go play in the park. What I can do is snuggle on the couch or in the bed with you watch TV, or read a book.
To my teenager: I’m sorry I can’t always take you shopping, can’t be at all your games. I can help you with makeup, or your hair and listen to how your day went, how many points you scored or what project you have coming up.
To my husband: I’m sorry, I can’t always go on date nights, or even a drive. I’m sorry pain and sickness get in the way of being in the mood. I can talk about your day, rent a movie on demand, and I’m really good at ordering takeout or delivery.
To my friends and family: I’m sorry I’m not the best daughter, sibling, or friend sometimes. I far too often focus on how I’m feeling to see what you need. I’m sorry I cancel plans all the time, or can’t come see you making you come to me. I can however text, video chat, talk on the phone and makeup for it with awesome products I get for review.
Lastly, to strangers I have yet to meet: I’m sorry if I seem impatient at the store. Mainly because I don’t feel well enough to be there, so I just want to get in and get out.
And finally, I want to say Thank you. Besides my family, I have a few amazing friends that I wouldn’t trade for the world. They have seen me on good days, and bad, and yet they are still by my side. I couldn’t do it without them. I may be strong willed, but I know my limits, and I wouldn’t be here today if it weren’t for them, my family or a kind word from a stranger now and then.
So, you may be wondering “well what can I do?” Of course every person is different but, I think understanding is something everyone wants across the board. Understand that we want to do things that we used to do, but can’t now and it’s out of our control. There is a saying I heard, and I think it’s so good. If you see your loved one having a bad day say to them (and please mean it, if you say it) “what can I do to help make your day better?”
- Children: Try to stay quiet or offer to pick up, and of course listen, just listen.
- Husband: Cook/pick up dinner, take kids out to the park or a walk. Understand that your wife, may not have gotten anything done that day but that doesn’t mean she doesn’t care.
- Friends: If possible, ask to take the kids to school (I know, not always possible). Send a text saying, “I know it’s probably not a good pain/med day for you, but I’m here to listen if you need to talk”. A kind word goes a long way.
- Parents: just keep being the best parents you can, even though it’s hard seeing your kids sick.
- Siblings: call, text but also don’t be upset if it takes a while to get back.
- Strangers: Please be kind. Don’t stare, don’t laugh or mock, just be kind. I’ll use the word again: understand. Understand that people with disabilities are just like you and have feelings, we just can’t do things that you can do.
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