I apparently have a face. A face that anyone from friends to loved ones to perfect strangers can say anything they want to me, without repercussion.
For example, just this week I was in the Supermarket. My cart was loaded down with the $1 Friendly Sundae cups. Now I realized I looked kind of ridiculous. I had plenty of salad fixings but then about 10 of the Sundae cups.
Anyway this woman in front of me says: Oh my, you must really enjoy those!
I wanted to reply: Look lady, I don’t even EAT ice cream. These are for the older child and her father. The one who will take a WHOLE gallon of ice cream to the fire station. This way they each get their ice cream at night. Oh and the older child can get her own serving. This leaves me more time to play Words With Friends. But I held my tongue.
Another example? Once day during Mass, during the moments when you give Peace to the individuals in the pew behind you a man replied: Peace be with you, with that one you will probably need it.
But the one comment, the one that really frosts me? The comment that makes me crazier than crazy warrior mom?
Excuse me… She will “grow out of it”? Let’s get this straight, people. Boo will continue to make gains. Boo will continue to astound us. But Boo will never be “normal”. Boo works very hard to be an almost-2YO in an almost-5YO body.
I am not trying to be Downer Debbie. I applaud everything Boo does. But I also am privy to the hard work it takes to get her there. Boo works harder at being Boo than a Harvard grad trying to get a minimum wage job in this economy.
I wish I could believe that Boo will “grow out of it”. But I cannot. The past two nights I listened to her cry herself to sleep because she doesn’t understand we are not in a hotel and Allie cannot sleep with her. I have watched her bang her head when she cannot have one more cupcake. I have witnessed her meltdowns, her laughter and her tears.
I have watched her hug Allie in one moment and swipe at her face the next.
Yes, Boo has come a long way. Such a freaking long way. She still needs a translator half the time to those who do not know her language. Boo still brings home art work that we know her aide did (trust me, her aides are much craftier than I am!).
And that, that one thing, is what really drives me crazy. That the people who love her the most thinks this is something Boo will outgrow. I know they mean well. These friends, family and strangers.
But Boo is never going to ‘catch up’. Boo will be all that she can be. Quite frankly that is enough for me.
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So let me know, what really drives you crazy?
PS–oh, one quick catch-up. Boo unfortunately will not be attending the birthday party. It is being held the same day as the NSTAR Walk for Children’s Hospital. Since Boo is our Team Captain she has to attend! But she was invited and that still counts.
(Un)Diagnosed and still okay 
The things that drive me sound so petty compared to your post here. I have just had a rough week, with my car getting hit, a flood in my bathroom and now my dad being sick and having to go to the doctor to find out today what is wrong with him. But seriously, 2 of my three definitely are fixable, but the third I am not going to lie is scaring me a bit and just hoping for the best now (fingers crossed).
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People are so stupid sometimes. That accounts for about 95% of what drives me crazy.
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People suck. Often.
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I tell myself people mean well. It helps me get over the stupid insensitive things they say. The worst, for me, is when they play it off as a cute joke and laugh at it.
Boo struggles as you say, but she's lucky to have such a great mom and a realist. Whatever happens, Boo will be herself and she'll see things a little differently than most. That, hopefully, will help carry her through.
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Thanks for the reminder that she really is working so hard. I admire both of you, heck the whole darn family! One day at a time and yes people can say things that we can't understand why they let come out of their mouths, but that is their problem not yours. Keep doing what you are doing my friend! 🙂 {{HUGS}}
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Oh honey, I get it! My mom asked me one time when Joe was going to outgrow his diagnosis? Seriously? The kid has autism!!! You *don't* outgrow it. Like you pointed out Boo will make huge strides but unfortunately you do not outgrow it.
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Hey you are allowed to be driven crazy by other stuff. And your dad being sick, that trumps everything.
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Thanks, Julie! Boo is lucky to have you in her corner of her world.
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Thank you!!! You know your mom loves Joe, but they just don't get it sometimes…
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They do mean well, which is why it drives me crazy. Because I feel guilty that I can't give them the wake up call.
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do strangers tell you the most absurd things about their life when you're in line, too? or is that just me?
normal is way over rated. the thing that keeps me going is knowing that at some point patty will be as good as it gets for her. i will be so glad when that day arrives. does that make sense?
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Mini is incontinent from permanent nerve damage, and I have had an alarming number of people ask or even tell me that she will grow out of it. You don't grow out of that! We go to the same hospital. 🙂 I didn't realize that Boo had tethered cord! Mini has had 4 detetherings so far (hers were complex since she has the spina bifida/lipoma).
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We console ourselves that people say stupid stuff because they just don't know better. Sometimes, I think people are just stupid.
Man, that was an uplifting comment, huh? 🙂
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Sometimes I wish people would just leave well enough alone and not say anything at all! I totally get what you're saying Kerri.
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I'm new to this party so I'm a little bit lost, but I totally get that people are assholes with big mouths. And the world sucks.
You should have told that bitch at the store that you're a teacher. She would have felt bad.
-The Insomniacs Dream
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Yes, they do tell me the strangest most intimate things about their lives. I am always feeling, hello I just want to buy some milk not talk about your affair with the milk man!
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She will grow out of it? People are complete idiots. And completely unrelated to that – they still sell Friendly sundae cups? I loved those! I worked at Friendly's when I was a teenager.
Thanks for the party update too 🙂
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I believe the most precious children are given to those who will understand and love them the best. Your Boo is one of those children. I'm so glad she has you. And glad, too that she probably doesn't (and maybe never will) understand the insensitive things that people may say about her. I have a daughter and a nephew with autism. And a niece who was born with only a brain stem. All are healthy and happy. And isn't that all that counts? thank you for this post. It was a definite wake-up for me!
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That would drive me crazy too. I have a cousin with down syndrome. He is 30 years old and has come a long damn way. It wasn't easy at all! I've seen what his abilities and applaud every damn one of them. I hate when we go out and people stare as if they never seen a man with down sydrome and ask all sorts of for lack of better words stupid ass questions! Uhh yes he can hold his own cup and drink like wtf? The freaking ignorance some people have! I am sorry I just got caught up in that moment. He will never grow out of down symdrome and that is fine. He is a man now that can do many things and yes we have to interpret things here and there but he is not stupid. He comprehends, just takes him a little while longer. Ok let me shut up I can go for days on this subject. I completely understand how youfeel. Boo will not grow out of it but she damn sure will be strong individual. You are doing a wonderful job with boo Kerri.
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Dear Lord, but I admire your patience and self-control! You know that saying that goes something like, “God only gives you what he knows you can handle?” Well, sometimes I think that God hasn't given me certain challenges because He knows that I can't handle prison. If someone said something like that to me — in CHURCH, no less! — I'd have gotten violent. And then, I'd have gone to jail. Hell, my temper is so nasty sometimes that I may have even decked the cow in the grocery store. And again…? Jail. You rock…people suck.
Visiting from Theme Thursday!
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OMG my number FREAKING one thing is do NOT tell me Tucker will grow out of it. Sucks sucks sucks. He won't. Like you said, he will gain. And he will grow further than he is now but this will not be something he just grows OUT OF. Gr.
Boo to Boo not going to the birthday party but awesome for her that she's doing something meaningful with you instead. 🙂
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Oh man do I hate when people say stupid things like that! When Bethany stopped having seizures for a few months everybody expected her to be “better”! Hello…she still had major brain damage. She still has moderate autism. And Seizure meds do not cure epilepsy!
People would say things like, “oh now you can teach her to cook so she can be more independent.” OMG!! What if she had a seizure while at the stove all alone? She still acts like a 2 yr old who has tantrums. Can you imagine her having a tantrum while chopping veggies with a sharpknife!? UGH!!
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I loved this from your post, “But Boo is never going to 'catch up'. Boo will be all that she can be. Quite frankly that is enough for me.” There are times I need that reminder for myself about Kayla, so thank you!
I can't believe that comment you got during Mass … why did that person have to go beyond “Peace be with you.” Ugh! What a rude thing to say!
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I am so glad that no one ever said to me that Sunny will outgrow “it”. It would make me probably sad and infuriated at the same time. Hugs, my friend!
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As much as my son will grow out of certain things (like pull ups–he's 8) and sleeping with his blankie (a blankie he's had since the age of six months) his Down syndrome will never go away, so I don't get those “He'll grow out of it” comments… but if I did I'd take notes from your blog! Great job!
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