Have You Ever

Have you ever?

  • Wanted to beat up that FB friend who complains about their “terrible” day that started with them sleeping through their alarm and missing their morning workout? When your terrible days all include doctors visits and maybe a short-term hospitalization just for funsies?
  • Been grateful to find out someone you know has a special needs kid? Not because you want their kid to be disabled, but because you’re happy not to be alone?
  • Giggled to yourself about someone else’s angst about their kid’s ear tube surgery?
  • Wondered “why me?” when someone you know gives birth to perfectly healthy baby number four?
  • or perfectly healthy baby number one?
  • Dreaded a doctor’s appointment so much that you made someone go with you for moral support?
  • Bit your lip when someone you love uses the r word because you don’t feel like bringing it up?
  • Skipped a birthday party because you just couldn’t deal?
  • Read someone else’s joyous pregnancy announcement and wondered if you could ever be that naive and ignorant again?
  • Looked at a picture of someone’s else’s “perfect” family and muttered to yourself, “at least my kid’s cute.”?
  • Been a disability snob? (example: Looking at someone using a scooter at Walmart like, “hope you know that doesn’t count?”)
  • Felt just a tad entitled, because Lord Knows you’ve dealt with enough already?

You are not alone.

**second edit because I’m still not doing a great job here. Many people are thinking that I am assigning value to another person’s disability or question whether or not they need the scooter. I guess the best way to describe the emotion is to say that it’s kind of like thinking, “We’re in the wheelchair club, and that, is not a wheelchair.**

Gonna go ahead and close the comments on this one. If it’s not clear, this was supposed to be a confession of horrible things that cross your mind sometime–not an endorsement. That said, I think a lot of people have mis-interpreted the words here—expanded them to include things that are not there. But I think we’ve all said enough. People think non-PC things sometimes. It’s not really a revelation.

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Comments

  1. Yep to most of these. Re, #1: Just did a “You think YOUR life is so tough?” post last week for 5 Minutes for Special Needs, inspired in part by my sister.

    And when Max was Charlie’s age, I also wasn’t able to take the birthday parties, either. Sometimes Dave would take Max, cause I coluldn’t deal.

    Someone used the “r” word at work the other day and I bit my lip, then wished I hadn’t.

    Only thing I’m not is a “disability snob.” If I see someone in a scooter at Wal-mart, I assume they need it….

    • Hey now! Never implied they didn’t need the scooter–just that it’s a different variety of disability. And I think we’re all snobs on some level–don’t you think some disabilities are worse than others?

  2. I love reading your stuff and thinking, yes, I feel that way too or I think that also. Since Sebastian is so young I really identify with the pregnancy/birth ‘have you ever’. I try not to but I just can’t help it.

  3. Oh, gosh, I’ve done all of those things except for being a disability snob, mostly because if you just look at us in the grocery store, and you don’t hear Stephen doing his dinosaur roar instead of actually, you know, SPEAKING, you would never know he was delayed. And here’s something REALLY sad – Stephen has NEVER been invited to a birthday party, and he’ll be 4 in December. Luckily, he’s really made some good friends, and I’m hoping that will change. Or at least we’ll invite them to HIS!

  4. I am to the point where I am glad that someone’s really bad day isn’t really bad, and I will post an appropriate “yikes” or “ugh” or something of the sort. What gets me when I post about a really bad day I don’t get the return favor — except by a friend who has a gradaughter w/ cp.

    I just don’t do birthday parties w/ Luke.

    I do get very frustrated when people (family) complain about how they (grandma, grandpa, mom, dad) had to take turns taking off work ALL week to take care of sick child, when I have done it numerous time w/ no grandparents (my parents have died) and no spouse. But heck, why do I need to save vacation days to really have some vacation?!

  5. Yes, yes, yes. Especially #3, as we’re headed into double hip surgery in a month. Or #1 when my “worst day” changed my whole life. And, I admit, I can be a disability snob at times too. Maybe I should work on that.

  6. I’ve experienced most of those!!! I felt bad because we went to the store the other day and someone pulled into the disabled parking spot I had my eye on, so I found myself watching them get out of the car so I could think to myself “Oh yeah right, you really NEED a disabled parking permit!!” But then a little girl about 10 years old got out of the car who obviously had some kind of CP, and it looked like she had recently had that tendon lengthening surgery or something because she had bandages on one of her ankles, and my reaction to that surprised me! As her family helped her walk across the parking lot, it made me happy to see her and even though I don’t know the girl from Adam, it made me feel so proud of her and her accomplishments!! Having a special needs child definitely makes you part of a community that NOBODY else can understand or appreciate, even if they THINK they can.

  7. Oh, Katy! You did it again!
    You have a direct line to my thoughts, girl!

    Yes to pretty much all of them!!!!!
    Particularly “the scooter doesn’t count!” Omigosh! Took Eli to Walmart the other day – and could NOT find a wheelchair spot! DO YOU KNOW HOW MANY THEY HAVE? And there wasn’t any available.
    Ticks me off…anyone can get a placard now-a-days!

    I finally parked on the line of two spots. I refuse to load and unload my kid where a car can whip in and hurt us. I put my placard on my mirror and hope people understand!

  8. Have you ever confronted anyone directly about using the “r-word”? That is something that has been on my mind constantly. I just don’t know what I want to say, and I want to really make my point and to reach them, not come off as preachy.

    What would you do if a guest in your house used the word (and in multiple conversations in the same night)? What do you say? It bothers me so much when people use it, and I feel like if I do confront someone I will just be lashing out because of bottled-up frustration. A family member of mine uses this word constantly. He even calls his daughter by the word (as a “joke”). I just can’t believe it. Why do some people find humor in making fun of the less fortunate?

  9. Okay, can’t really say yes to a lot of these, but I want you to know that reading your blog over the past several years has really opened my eyes. So thank you for that.

  10. To all you moms of special kids – I am in awe of your strength and coping skills and happy you are speaking out in this safe place. My work at a facility providing services to kids with special needs brings me in contact with champions every day – it is a blessing and privilege to witness small and large triumphs on a daily basis. God Bless You all!!! You are my heros!

  11. I HAVE felt many of those same feelings…particularly the “skipping the birthday party” and “been that naive back then” points.

    BUT somehow seeing them written down was a bit of an eye opener for me. Especially the “disability snob” comment. My little girl looks “typical” and the idea that someone, let alone another mom with a SN child, is judging us for using an accessible parking space makes me feel sick to my stomach. We (I am just as guilty) complain so much about the judgement of others when it comes to our kids disabilities and differences. But how judgmental and ignorant is it to assume that we understand someone else’s disability is or whether they in fact need that scooter. Going through everything that we’ve been through with my little girl has made me realize that most people have struggles and until you know their story, you just DON’T know what they’re going through.

    Ultimately I think one of the “good things” to come out of all this is learning to be MORE compassionate, LESS judgmental and being able to step outside of yourself for a moment…enough to understand that you don’t know everyone’s story.

  12. Wow! We do need to be able to articulate this stuff and you do it well. I am working on my r- word speech for the future because it is so hard to stuff the feelings down anymore. I am afraid I am going to have a really dramatic reaction if I keep doing that! It is easy to come up with things to say in my head, but it shocks me each and every time I hear it. “That word hurts so many feelings and it is SO going out of style,” is my sentence of choice lately.

  13. Yup to most of these! And definitely to the “at least my kid is cute” one!

  14. Hi! I know you didn’t mean to imply someone doesn’t need the Wal-Mart scooter… I think I was just reacting to the word “snob.” Yes, obviously, some disabilities are more significant than others, but that to me doesn’t seem like a “snob” thought, just the facts of life. I do sometimes compare Max to other kids who have cp and/or strokes.

  15. Yep, yep, yep, yep. I have to most of those. The baby thing gets to me…It’s gotten easier, but I still look at pregnant women (and those with newborns) with a sort of wistfulness. I miss that innocence. I hope to have more kids, but I know I’ll never look at pregnancy the same way again and sometimes I miss the happy-go-lucky me…the one who knew nothing bad would ever happen to her. She’s gone and that’s kind of sad.

    P.s. I love you blog. I don’t comment all that often, but I’ve related to a lot the stuff you’ve written about lately. Charlie and Elijah are about the same age, so we’re going through a lot of the same things.. My little dude is starting preschool this fall and I’ve enjoyed reading about Charlie’s adventures (and yours) as you transition. :)

  16. I have to agree with all you have said here- even prior to the edit. I know I am one of the lucky ones because Anna can walk and is talking but we have still been through so much. What gets me about the Wal-Mart carts is the ones who use them because they are too obese to walk around. I could go on forever about that- espcially since most of them end up int he ICU where I work due to complications of their obesity. Sorry- tangent. Anyways, I love all you have to say, as always!

  17. Well, looks like I’m the odd one out here. I’ve never had any of these thoughts….I always look at Elisabeth and feel like I’ve won the lottery. Lucky me, lucky me.

  18. Will I ever feel like Lisa, just above me here in the comments, and think I’ve won the lottery? Well, I don’t know. I have the two loveliest girls to walk the earth, ever, given to me, but to go without the fear and worry that the metabolic disorder will cost her more than this level of CP, or the CP will cost her a lifetime of life that is harder than it is for others? That might my first child, born small, will likley not be five feet tall, despite the personality of a giant? Will I ever see these challenges as blessings as some of you do? I don’t know. I don’t know that I will. Right now I know I will spend the entire week, working full time, seeing four different therapists between M-H then Friday have double hospital procedure day while we have an MRI then dental work under a general because Hannah’s metabolic disorder makes her need a different IV, and no one wants to be the department who is responsible while she moves from one suite to another. It has taken thirty calls to set this up, and that is with everyone being helpful. Blessings? A blessing today was that when she wanted to feed me blueberries she was willing to try to do it with her right hand – a new way of moving it for her. Blessings? She is learning to say her name as “nana” with a blush and a giggle. But I am still stuck in the why me, why Hannah, why not some stupid crack whore who wouldn’t stop using? Why me, with all my love, and my my girl with all her innocence? I’ll be publishing a rant soon, can you tell? A special needs mom manifesto. Look out, perfecto family.

    • Hi GingerB —

      Will you get where Lisa is? Hard telling. Remember, you are Ginger and Lisa is Lisa. You are two different people dealing with different issues. Your motherhood journey will ebb and flow — sometimes good and sometimes not so good. I don’t see the challanges as blessings. I have learned lots because of the the challanges — so the learning is a blessing.

      I got some rest this weekend, a haircut, and a new sewing machine (my previous one was knocked off the table!) — so I’m not in a “why me” mood this morning. But don’t talk to me after hearing about how someone typical was “so glad they had a vacation because they really needed to get away”. My vacation days are spent at dr appointments, IEP meetings, w/ sick kids, etc., etc.

      Great blessings! I’m still waiting for Luke’s first words.

  19. Katy,

    I have had some of the same thoughts too. Charlie is young. You live and learn every day! Cj always has looked so normal and gorgeous (thanks to ABR) until his new diagnosis (It really is just his lip). He is going through a really tough time right now because he had to have his 2 top teeth pulled because of his behavior that goes along with Lesch Nyhan.

    We went to a party this weekend and saw some friends that have not seen him in 5 years. My husband brought him later in the day! I brought Ryan early and thought Cj should of stayed home because of his new issues.

    They were ALL so awesome!!! Each person (20+) took some time to hold his hand, talk to him like he had no problems and made him beam with pride! I was so happy my husband brought him!

    They all think we are blessed. Which we all are! I think almost everyone I know has some sort of issue with their child!!! Special needs or not!

  20. Moo so wants an old person scooter (mobility one). I’m not sure whether it’s the canopy or the captain’s chair. Honestly and realistically, he’s never going to be able to use one cause it’s not supportive enough. Let alone he’ll drive around in circles. I think I am a disability snob cause I see someone hop out of the scooter and walk into the loo and all I can do is sigh.

  21. I came across your blog from another… don’t remember which one.

    I hope I say things right. My child doesn’t qualify in the “disabled” sense. He has ADHD and please don’t snicker and think “that’s all?” He hits 8 out of 10 of the criteria. I know it’s pretty minor in the overall scheme of disabilities. He is a lovely child and has a smile that charms the socks off everybody. He’s 5 and doesn’t sit still. I put him in the grocery cart in the store because I know if I don’t he’ll RUN and since I have arthritis in my back – I can’t catch him!

    I look wistfully at these other children walking next to their mothers and the mothers just casually shopping and just glancing at their child now and then.

    I push my cart down the very middle so he doesn’t swipe things off the shelves.

    I see mothers look at us and I get the feeling that they’re thinking “can’t you control your child?” I feel like a very bad mother and I want to point at my 13 yr old daughter and say “see? I know how to parent – she turned out okay?”

    It’s just that he is exhausting. I love him so much. The child psychologist smiles at him and says that he is a Ferrari without a steering wheel.

  22. I wonder if the reason I don’t feel the same as you is because I have two other children who have no special needs. I think it may be because I was their mother first so I felt different when Lexie came into our lives. Don’t get me wrong though, I feel the same way about a coupIe issues. I think we all can safely say we all asked why us and not the druggie, but there is something different when you go from healthy children to a disabled child. I think that is why I don’t see humor in another parent’s concern over their children. I remember with my first having to be hospitalized for dehydration and that was just as scary as seeing Lexie after her surgey. Now those are two totally different situations but what it came down to is that I was worried about my child just the same. At that moment his dehydration was a big deal but right now in this phase of our life, it looks more like child’s play. So when a friend is complaining about getting ear tubes, I seem to have more sympathy because we all worry regardless how serious the condition may be. I remember reading your post about Charlie’s ghost and thought it was beautifully written but I just couldn’t relate. Lexie may just lay on the floor while all the other babies her age are crawling around but I just not bugged by them. I actually find the opposite, I am happy that my friends get to stay in that naive and ignorant phase. It does bug me though when I think of what my daughter would be like without her disability. I imagine if I were to ever meet Lexie in the form that I had imagined at the beginning of my pregnancy it would be exact feelings you described.

  23. Hi Katy…just getting caught up on my blog reading after vacation and have to comment on this post. I LOVE IT. And YES, I have thought EVERY SINGLE ONE of these.

    And I don’t think I’ve ever told you, but I love the new look of your blog! It’s perfect. And suits you so well.

  24. I would wonder, really, about anyone who didn’t ever have one or all of these thoughts…
    They all seem perfectly natural to me!

  25. Yes I hear you…and get you..

    and I get so jealous when I see people on family number 3 with wife number 4 and I couldn’t even have a child with my 2nd husband. I don’t look forward to baby this, and baby that, it makes me cringe. I have such a hard time being happy, when a part of me wants to scream I wish that it had been me.

    Jealous, heck freaking yes. Dealing with it? Some days better than others.
    Moving on, some days it just plain sucks..

  26. I think it is only natural sometimes to think this way. As it is okay to give into a wave of depression because of the lot that you and your child has been given.
    It is only natural.

    Hugs

  27. Just an hour before I read your post I was in Target with my daughter, who has ASD. We had to use the elevator because I had her twin siblings in their double stroller. Just behind us entering the elevator was a young woman in a wheelchair, and my daughter in her unregulated, non-socially aware voice said, “She’s in a wheelchair!” Silence reigned in the elevator as I said, “Yes, honey.” and nothing more, knowing that any further engagement on the topic might bring on a further torrent of inappropriate comments. I wondered silently if the young woman or her companion thought us both rude, unfeeling, uncaring, etc. The ever-present divide between visible and invisible disabilities smacked me upside the head. I didn’t know how to explain that contained in this elevator ride were two young ladies each struggling in their own way to make it in the world. I wanted to say that we had just spent a lovely weekend camping with another young lady in a wheelchair, and that had raised my daughter’s awareness, curiosity, and interest in these assistive devices…much as finding out that “Papa Krist” drives a convertible has lead to pointing out every convertible we see on the street or curb. I wanted just to disappear into the floor. Instead we moved on with the day. There really is no way to know what someone else is battling with, or thinking or feeling. A dear friend reminded me that we all struggle, just in different ways.

    This is not to say that I haven’t had thoughts similar to yours. Actually I look at my own wedding photos and think, “How could you have been so naive?” I have the most trouble fighting down rage and feeling compassion toward those who carelessly conceive and then discard their offspring, or as others have said damage them through careless neglect.

    The bottom line is I can’t let myself get caught up in these thoughts when they do surface because they generally are not helpful or energizing. I need to spend my energy in ways that will be beneficial for myself, my daughter, and our family.