So, a few weeks ago, trying to be ahead of the curve a bit, we took the kids out to find some costumes. I wish we could make them - like what we did when I was a kid - but talk about work! So, that's out of the question. Of course Cooper didn't seem to understand what he was trying to pick out and with every suggestion his answer was "no." We decided we would recycle one of Murphy's costumes. For Harlie, I narrowed her selection down to Jessie (from Toy Story), a bumble bee and a cat. I wanted her to be a witch this year, but her school had some character parade on Monday, and they couldn't dress up as a witch (ugh). I wasn't going to buy two costumes. So, so much for the witch idea. Anyway, she choose Jessie. Murphy was easy. He's known for a while he wanted to be "Snake Eyes" (from GI Joe maybe?). Bought the costumes, and marked that off my "to do" list. Doing great and feeling like a good mom!
Then on Saturday, Harlie brought me her costume and wanted to put it on. And that's when I discovered that it was WAY too small!!! So, of course I take it back and there's no more Jessie costumes. I ended up buying the bumble bee and the cat costumes and brought them home for her to choose from. She choose the bumble bee. Great. Crisis averted.
So on Monday, I took Harlie to school and stayed with her all day because.... we found a new nurse! Can you believe it? Terri's first day was Monday, so I worked with her all day to orient her (they won't pay for two nurses at the same time so one can orient the other - which I think is terrible). Anyway, spent all day at school. Then as soon as school was out we went straight to Harlie's 5-year well check appointment. Then I had to run an errand for Halloween (Harlie needed black pants and I had to return the cat costume). Luckily Jennifer's daughter just outgrew a pair of black pants, so I stopped at her house to pick them up. So I ended up still being in the craziness of last minute shopping that I was trying to avoid! Never fails... Then I got home at 4:30 and realized I had NOTHING planned for dinner.
Murphy dressed himself (he's such a big help) and now I had to get everyone fed, dressed, pictures taken, etc. and hit the streets - all with a smile and in the name of FUN!
Whatever.
So, Tom got home and said there was a frozen pizza in the freezer. Great! I went and got that, preheated the oven, took the pizza out of the wrapper and put it directly on the oven grates, as directed. I even set the timer! Ahhh, I'm a good mom after all, I thought.
Pizza was done, I pulled it out and cut it. But, it didn't cut very well. I couldn't figure out why the knife wasn't going through. So as I cut I spread the pizza apart with the knife and that's when I saw the cardboard!!! Damnit! I didn't realize it had a cardboard bottom! So, the crust didn't cook very well at all. It was all mushy. And dinner was ruined!
And that's when I feel completely inadequate as a mom!!! My mind is so focused on Harlie's education (or lack thereof), nursing, scheduling upcoming surgeries, trying to find a surgeon for a 3rd opnion, etc. that I just don't have it in me to do the simple things. Like cook or have fun.
Tom and I ate the pizza anyway because 1 - we were hungry, and 2 - we didn't have any other choice. The boys got butter noodles and Harlie got a can of formula. It's a total Norman Rockwell kinda scene over here.
I did manage to buy a blond and pink wig for myself to wear, so I kept on focusing on that so I would look like a mom who knows how to have fun.
Amazingly, Harlie actually wanted to put on her costume, so I got her and Cooper dressed, put all the kids together and got a few photos. I would show you, however, we can't find our freaking camera. Nice. Luckily my niece, Maggie, came over. So, she took some photos with her phone. I'll have to get her to e-mail them to me.
I made a drink for myself, loaded the stroller up and we headed on out. I was so glad Maggie was with us! She made it way more fun and walked with Harlie up the driveways and to the doors.
And you should have seen Harlie. She wanted to be just like all the other kids - holding out her bag, letting them put candy in (or picking it out herself) and saying and/or signing "thank you." And for some reason, it broke my heart. I've just been feeling pretty sad lately, and to see her working so hard for something she was never going to eat... well, something about that just made me even more sad. She's just so darn sweet sometimes, it kills me.
All those stairs, and hilly driveways... all while wearing her PMV. That is HARD work for her!!!
After a few houses she got tired, so I put her in the stroller and went as far as I could go (up a driveway for example) before letting her out and she said, "Halloween" just as clear as a bell. Maggie and I both turned our heads to her and said, "Did you just say Halloween?" So, I know I'm not crazy. Maggie heard her, too.
She wants to talk so bad - yet she hasn't received speech therapy at school in over a month!!! But don't get me started...
The night ended up being good. I can't walk with Murphy anymore because he is way too fast for Harlie. So, he went with our neighbors. Cooper walked the whole time. He walked with me and Harlie on our street. And then when we passed our house, he wanted to stay with Tom and give out candy. After I got back with Harlie a little later, Tom took the boys out again for another trip.
And somehow we misplaced the camera. I've been having photo issues lately. I'm either missing the pictures or the camera. We can't win.
So, here's a picture I took a few weeks ago...
And here are some more...
Kids. They sure are funny.
Happy Halloween! Whatever.
~Christy
5 comments:
Oh Christy. I love the Norman Rockwell comment, it totally made me laugh! If it helps some, just know that there were thousands (if not hundreds of thousands) of parents scrambling last night to try and get it all done in time to get the kids out the door. Halloween on a school/work night is just insane. While you don't technically have an employer (ie: a job outside the home) - Harlie is your employer and you spend as much time tending to her needs as those of us who work full time at jobs in offices and the like. Please don't be so hard on yourself. Are you doing the best you can? Would you do anything in the world for your children within your power? The answer is yes. And no one -- not even you can ask any more of you than that.
All that said, I understand completely how you feel. So, I'm not trying to diminish your frustration and sadness, I just wish you would go a little easier on yourself. Life is chaotic without special needs kids, it's insane with them. You are doing an awesome job all the way around with all your kids.
Love ya'
Ann
You also got me on Norman Rockwell. lol. I love your realness. I love that you don't kid yourself into making something seem fun that really isn't. I love that you allow yourself to feel sadness in the moment even if it kind of ruins the night. That's okay. It's all really good. You have so much in your life and you juggle it all impressively well. There should be many more dropped balls, but there aren't. You are keeping things afloat. You are keeping things real.
It's also worth mentioning that EVERY holiday as a parent seems to not be nearly as fun as they were when we were kids! Parenting is hard, especially when there are big expectations!! I'd rather mother in the little moments than the Kodak ones!
Those pictures are so cute and so funny!! I know you don't feel like your life is "typical" and in many ways it's not, but those pictures show pretty "typical" happy kids and siblings growing up with lots of love surrounding them! It's awesome!! (and I love the picture of Cooper, clearly screaming, reaching for somethiing from Harlie...she looks like she's saying "I dont think so little brother!" haha, gotta love it! :)
Love,
Liz
Oh Christy. You are funny even when you aren't necessarily trying to be. I suspect your "not fun" is still funner than me on my "funnest" day. You're a great mom for so many reasons and you know the kids don't really care. It's Halloween! My mom didn't even take us trick-or-treating (or a lot of other things) so I think I try to overcompensate. Making myself miserable all the while. Holidays are a lot of work. Your schedule is already quite full. I love Halloween but my favorite part is always still when it's over. I understand about your feelings about it and Harlie and the things that always seem to go wrong. Hugs!
I'm so glad to hear you found a nurse! That's a relief!
Have you thought about instituting an annual visit from the "Candy Fairy"? The kids leave some/most/all of their candy out in a pile when they go to bed and when they wake up in the morning the candy is gone and a special toy or some other sort of present/surprise is found in place of all the edibles. This is something I've thought about doing every year and - despite not having half as much that I truly need to do as you do - I've never managed to pull off. It might be a fun way for Harlie to be able to more fully enjoy the holiday though.
And to echo the sentiments of others here...you're a rock star (even if you don't always feel like one)!
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