Thursday, August 25, 2016

What Does Disability Look Like - An Open Letter

“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 teen not seeing her mom in the stands at her volleyball, basketball or other sports events.
  • 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.

Please like us on facebook so you can get updates, new giveaway listings, and more

64 comments:

  1. Disability definitely isn't always visible in the ways people expect. Thank you for sharing so honestly.

    ReplyDelete
  2. Thank you so much for sharing this. I always think it's important to see personal stories of people and their journeys.

    ReplyDelete
  3. And to that, I have to say, you have nothing to be sorry for! We all do the best we can with the limitations we are given. I'm sorry I'm not always the most compassionate friend. Love ya chica! -Paige

    ReplyDelete
  4. it's not always easy and I agree you don't have anything to feel sorry, some things are out of our control and we can only do the bet we can do. This was well written, thanks for sharing.

    ReplyDelete
  5. Thanks for sharing, couldn't have been easy! I am always mindful that not everyone has a visible disability. You never know what one is dealing with or going through, so people need to chill out. I always remind myself this, daily. - Jeanine

    ReplyDelete
  6. This was moving. I never know what a stranger is up against, so I try to dole out extra kindness when dealing with others.

    ReplyDelete
  7. Thank you for getting personal with us! This post serves as a reminder that we should all be kind, as everyone is fighting a battle of some kind.

    ReplyDelete
  8. Love this post! It is so true that many people suffer with things and outsiders have no idea, especially when there's no physical signs. My mom has Lupus and has had some really, really bad days, but most of her physical symptoms are on her feet, which look horrible, but she hides them so people would never know she has it. It has affected her heart, joints, and since her immune system is compromised, she gets things easily and takes her 4 times longer to get over something that most of us are over in a week. Good luck to you! Hugs.

    ReplyDelete
  9. I'm so sorry, Katrina. Sending lots of hugs.

    ReplyDelete
  10. I'm so sorry, Katrina. Sending lots of hugs.

    ReplyDelete
  11. Love you Kat! I know you always do your best no matter what. I'm always happy when I can help and am so glad you are so much closer so we can visit more often. You are a strong person and I'm lucky to have you as a friend.

    ReplyDelete
  12. What a heartfelt letter. I am sorry if you are in any pain or if what you are going through is affecting your personal appearance. It must be frustrating with trying to operating to the best of your abilities but your loved ones still cant empathize. Hopefully everyone who reads the letter can see a little more that you are trying to function and be a little more understanding. I know I am more empathetic towards you.

    ReplyDelete
  13. It's never easy to deal with disability and I'm sure your family and friends understand, especially the kids and your husband. I think you're very brave for sharing your story and your feeling. You don't have to apologize.

    ReplyDelete
  14. I am so sorry Katrina, and wishing you strength. Thank you for sharing this important journey with us.

    ReplyDelete
  15. Oh, I am having a heart break. I hope everything will be fine. Stay strong.

    ReplyDelete
  16. This was eye opening and important for me to remember that disabilities aren't always visible. Thanks for sharing your heart.

    ReplyDelete
  17. This is a beautifully written and very truthful post when it comes to living and dealing with chronic illness. It definitely hits home for me, too, because I deal with several chronic illnesses on a daily basis and I do feel sad and guilty about canceling plans, not being able to do things, etc. As much as I KNOW it can't be helped it still hurts your heart.

    ReplyDelete
  18. Katrina you are such an inspiration. You are a devoted Mother, wife, and daughter. You are a very special friend. You always take time to check on others even when you having a rough day. Your friendship means the world to me. I'm so bless God placed you in my life.

    ReplyDelete
  19. So touching. I'm sorry you have to go through this, but I'm sure your family understands. <3

    ReplyDelete
  20. This is such a beautiful post and I appreciate your transparency.

    ReplyDelete
  21. I have m.s.,Parkinson, and fibromyalgia.. I know exactly how you feel.If I go out I need my chair,i can't go in Dunkin and have a treat with my stepson they don't have access,i love McDonald's, unless my fiance is with me, it's frustrating to not see people sorry you're going through this

    ReplyDelete
  22. I have m.s.,Parkinson, and fibromyalgia.. I know exactly how you feel.If I go out I need my chair,i can't go in Dunkin and have a treat with my stepson they don't have access,i love McDonald's, unless my fiance is with me, it's frustrating to not see people sorry you're going through this

    ReplyDelete
  23. Such a heartfelt emotional post. Thank you for sharing and for saying what so many people want to say.

    ReplyDelete
  24. That is why I am kind to any mother I get acquainted with. I know hat everyone of us has our own battles.

    ReplyDelete
  25. This is a very touching open letter. I love your honesty and sincerity.

    ReplyDelete
  26. So beautifully written. A great reminder to all of us how tough it is, not only physically but emotionally and mentally as well. Thank you for sharing, it couldn't have been easy. Continued prayers, God never promised life would be easy, but He promise to be with you. Love you.

    ReplyDelete
  27. Thanks for sharing this. I have chronic migraines, and I have days that are lost completely due to a migraine. I feel horrible for the things I've missed too. All anyone can do though is their best.

    ReplyDelete
  28. What an inspiring post. You have a beautiful and supportive family.

    ReplyDelete
  29. It's never easy and I really admire you for sharing your story. Because of this, a lot of people will understand and will also be inspired. I hope you stop apologizing though, it's never your fault and you never wanted anything like this to happen.

    ReplyDelete
  30. This was sad and moving! Thanks for sharing your story! It just a great reminder of how lucky we, who don't have any such problems, are and how often we just don't appreciate that.

    ReplyDelete
  31. Many people have invisible disabilities, but your article shines a light on what many of us go through.

    ReplyDelete
  32. Disabilities definitely aren't always visible in the ways people expect. I had no idea......Thank you so much for sharing it!!

    ReplyDelete
  33. This hits so close to home for me. I wasn't able to lift my youngest out of his crib for the first few months, so I had to get my husband to do it. Also, I get tired so easily that I cancel a lot of plans, so now I just stop making them. It's difficult for others to understand our pain if they can't see any external ailments. Thank you for your strength!

    ReplyDelete
  34. Disability can be such a hard thing to explain to people. It comes in all sorts of shapes and forms. Thank you so much for sharing this.

    ReplyDelete
  35. So sorry. Living with a chronic illness is hard on the whole family. It sound like you have good support.

    ReplyDelete
  36. I am sorry to hear that you are going through this! I know having a disability is SO hard! I have chronic issues myself. Keep doing what you can and your will always have the love of your family to back you up!

    ReplyDelete
  37. This is an excellent post! Disability doesn't always LOOK like anything.

    ReplyDelete
  38. This post is both so personal and informative. You are a brave person - thank you for sharing your story.

    ReplyDelete
  39. Thank you!! This not only opened my eyes to knowing what people are going through, but it helped me to understand and remind me that disabilities come in all ways!

    ReplyDelete
  40. It is so important not to judge people. You never know what that person is dealing with. Sometimes a smile and a helping hand can change someones day.

    ReplyDelete
  41. You never know what people are dealing with. A lot of disabilities are not visible.

    ReplyDelete
  42. Thank you for sharing this with us. Disabilities come in many different forms and can't always be seen.

    ReplyDelete
  43. I'm sorry you have to go through this. Your letter was beautifully written and really choked me up.

    ReplyDelete
  44. I love how open and honest you are. Disability can be one of those things that you don't really understand until it hits you. My cousin was a troop leader for his sons for the scouts and lost his foot due to infections. I bet his son feels the same as your daughter does. It's tough but we make it through. This was a rough read but really opened my eyes.

    ReplyDelete
  45. What people don't realize is that disability is in all shapes. I believe anything that hinders you from soinf what you want with your life even depression can be a disability. I applaud you for sharing this. You are strong for your kids as best you can be.

    ReplyDelete
  46. Thank you for your honestly and sharing a part of you. Though sometimes we would love to extend our appreciation and affection to loved ones, our disabilities hinder us but that doesnt mean we love less.

    ReplyDelete
  47. So sorry you have to deal with this. :( One of my best friends does too and it is hard. As someone on the outside I just want to help but I can't :(

    ReplyDelete
  48. You've managed to to turn that all into a lovely heartwarming thanksgiving message and I believe that's how all people should strive to do. We've all been there, being the sick one and being the one who was left alone. It's all a matter of understanding and trust.

    ReplyDelete
  49. Disability comes in different forms and I know how hard it can be. Thanks for sharing and being strong!

    ReplyDelete
  50. This must be such a struggle. It's really hard to know if someone you now might be going through things like this.

    ReplyDelete
  51. Disabilities can really make life a challenge, especially for us moms. Thanks for sharing your journey with loyal readers of your blog.

    ReplyDelete
  52. It's not easy to live with disabilities. Kids don't understand, family don't understand, friends don't understand. You need a good support team of others going through the same thing.

    ReplyDelete
  53. Having a disability really sucks & you describe it beautifully here. It's not the fact you have a disability but what it keeps you from doing that is the worst. It hurts & disappoints so many wonderful people. Even something as simple as cooking a meal for your family is impossible at times (a lot of times). It's not lazy, it's pain. Pain that's on the inside when the outside looks fine & no one understands until they experience it. Just because we aren't crying doesn't mean we aren't hurting. Just going to the bathroom takes your breathe & strength away where others don't even think about a trip to the bathroom. Oh how I miss those days, where I cooked, cleaned & went to the bathroom without a thought about it. Thanks for sharing this & I pray that just 1 person who reads this will come to understand that not all disabilities are seeable & that we do our best not to let it show most of the time.

    ReplyDelete
  54. Having a disability really sucks & you describe it beautifully here. It's not the fact you have a disability but what it keeps you from doing that is the worst. It hurts & disappoints so many wonderful people. Even something as simple as cooking a meal for your family is impossible at times (a lot of times). It's not lazy, it's pain. Pain that's on the inside when the outside looks fine & no one understands until they experience it. Just because we aren't crying doesn't mean we aren't hurting. Just going to the bathroom takes your breathe & strength away where others don't even think about a trip to the bathroom. Oh how I miss those days, where I cooked, cleaned & went to the bathroom without a thought about it. Thanks for sharing this & I pray that just 1 person who reads this will come to understand that not all disabilities are seeable & that we do our best not to let it show most of the time.

    ReplyDelete
  55. Aww, I can understand what it is like to suffer from a silent illness. Not many people understand but I hope your journey can truly get easier.

    ReplyDelete
  56. What a beautifully written, moving letter. As someone who also lives with a largely invisible illness I can very much empathise with many of the things you touched on. Your family knows that you love them, that you are there for them, and that is ultimately what counts. Snuggles on the couch with your daughter is something she will treasure forever. Sending hugs xx

    ReplyDelete
  57. Sorry to hear you feel so sad due to your disability. Try meditating and reading positive affirmation. It definitely helps me a lot especially after loosing my mother. Enjoy the rest of your week :)

    ReplyDelete
  58. I don't know what to say. I will pray that your condition will improve and that you will be able to do all these things you dream of doing again.

    ReplyDelete
  59. This is an all too real post. My mom was disabled and not able to do too much with me so I know how that feels from a child perspective. Looking back I dont remember too much of what she wasnt able to do, I guess because she was always around, if that makes any sense. And I guess it did not bother me too much growing up as I did have family that did things with me...playtime at the park, walking me to school, church fairs, grocery shopping. I know it was hard for her not to be able to do things with me but she never really let that part show, not to me anyways.
    Do the things you can, and do them as well as you can. Dont let the things you cant do affect your ability or want to just be available for your family and friends.

    ReplyDelete
  60. What an inspiring article. Yes people nowadays doesn't seem to look at peoples disability. I hope someday people would understand.

    ReplyDelete
  61. Thank you for sharing. Its nice to hear your not alone and not the only one having a disability.

    ReplyDelete
  62. I'm so sorry you have to deal with this kind of disability and thank you for sharing with us how you feel so we could understand.

    ReplyDelete
  63. Thank you for sharing. So many suffer in silence.

    ReplyDelete
  64. I really appreciated reading this. Putting it into perspective, my disability isn't as bad as I thought it seemed. Anything to help[ me think the pain is less helps, so this was a nice inspiration.

    ReplyDelete

ShareThis