Days like these.

 (this is long and unedited. I’m not even reading it twice. much too tired)

Last night Abby screamed for a good six hours. She’s constipated. This is new, but not all that unexpected. Very common for kids with Down syndrome. Add to that an awesome lineage of family members with digestive issues, and well, it’s going to make for some fun times.

(So I’m not kidding about this. My little brother Jamey was digging through our geneology and found that one of our ancestors name was “Eystein “the Fart” I Westford Halfdanarsson King in Vestford” .  He died in 780. That’s a fun fact!)

So by 1 AM I found myself standing in front of my refrigerator, doors open, eating apple pie with my hands.  It tasted so good. It felt so good. Emotional eater? Nah.

By 2 she was asleep and I was too, sort of. I don’t sleep well. Ever. I wake up and listen to Abby breathe. I have nightmares, too. I’m full on crazy. The morning hours are when I sleep the best. I usually can go from 4 to 7:30 only waking when the kids come in. At 7:45 this morning I JUMPED out of bed and realized that I had to get myself ready for the day ALONG with my kids. Today was going to busy. I had to shower. Not just because of the smell, but there was quite an itch going on. 

Mornings SUCK at the Magnusson house. I shouldn’t really complain because most of the problem is me. I’m always ill prepared. Casey’s medicine doesn’t kick in for about 30 minutes or so, and until it does, he DOES NOT FUNCTION (actually, the same can be said about my ADHD meds…so basically, we’re screwed) And because I refuse to get out of bed until the very last minute, he usually doesn’t get his meds in any sort of time that would be helpful at home. I’m working on another post about a typical morning. Get excited.

Or I won’t. We’ll see. I don’t follow through.

Anyways, I threw some food at the kids and ran downstairs to grab their clothes. I notice a BATH MAT on my keyboard. Casey looks at me and says, “I’m so much sorry!” He had dumped a bottle of water on the keyboard. Not sure why. Not sure why he used a bathmat to clean it. Or hide it. Whatever. I get it cleaned up and get back to running around trying to get the morning over with. The entire time I’m watching the clock. The aid is supposed to arrive at 8. She’s NEVER on time. 8:05, not here. 8:15 nothing. 8:25 I get a text that says, “hey, I forgot that I had to take my dad to the airport, so I’m not coming today. Sorry!”  

The “F” word. I may or may not have said it. I may or may not have cried tears of rage (first one yes, second one, no).

It would have been one thing if this was the first time. It happened last week. She just didn’t show up one day and then the next day she was late. I had a dentist appointment for Peyton in the morning and HAD to have her arrive on time. Or even close. Nope. So I told her that I HAD to have her be more dependable. That she was great with Abby and that I really liked her, too. But if she wasn’t going to show up, I needed to know in advance. And that she needed to start arriving on time.

So I fired her. She acted like I was doing something so offbase. She said, “You told me to tell you when I wasn’t coming in, and I did!” THE MORNING OF?! AGAIN?!  I’m not sorry about it, either. She was starting to get WAY lax. She had the TV on freaking TEEN NICK all of the time. She was spending more time on her phone, etc. It’s a super sweet job, too. She was getting paid almost $12 an hour to play with Abby.  Plus, she didn’t have to do ANYTHING when Abby was asleep. $12 to sit on my couch and watch TV and text her boyfriends. The problem too was that I didn’t lay out the rules and expectations first. I was just so excited that I was going to be getting a break, that I didn’t realize that I was in fact her employer and that I expected her to do anything any other employer would. Be on time. Don’t skip work. Etc.

Anyways, I digress. This is going to be long and there’s no reason for anyone to read it, I just need to vent. Poor Melissa, she always gets to hear me byatch on and on about this crap. Now you get to, too!

So I had to be at the boys’ school at 9:30 for their “Curriculum Day (a day where parents come and see what they do in different classroom settings and whatnot) “. I told Casey I would be there. Just as I was leaving (no kidding, bag on shoulder, Abby in hand, etc) the Developmental Therapist showed up. I have ZERO recollection of making that appointment. I wouldn’t have. Wednesdays I keep free. But it’s not beyond me… I guess…  It would have been fine, too, if the damn aid had shown up because the therapists aren’t coming for ME. So I invite her in but tell her that I needed to end early. I could miss the first part of Curriculum Day…no harm in that, right? I love our DT. She’s awesome. I byatched at her about the morning, too. We had a super fast appointment during which I spilled a huge container of bubbles all over my pants. Awesome. After it was over I threw Abby in the stroller and RAN to the school. On the way, I had to reschedule Carter’s dentist appointment for later because I no longer had a babysitter to go get the other boys from school. That was fun to do while running.

I get to the school and go straight to Casey’s class. Before I went in I saw his Special Education teacher sitting in the cafeteria. The look she gave me I recognized well. It said, “uhm, things sort of suck right now”.  I walked further into the cafeteria to find Casey laying on the floor, socks and shoes thrown about. I wasn’t there when he thought I was going to be there and he freaked out. He threw a shoe at Mr. K. Tried to break his name tag. This on a day that TONS of his classmates parents were there to watch.  I apologized to his WONDERFUL Sped teacher and before I could finish I was nearly in tears. The lack of sleep makes me vulnerable to human emotions. I hate human emotions. We (mostly his teacher) got him to calm down and took him to apologize to Mr. K. I’ve spoken ad-nauseam about how great his teachers are, but not enough could be said. They have the ability to change his ENTIRE day with the decisions THEY make. It’s been a lesson for me. As we were walking to the door, the teacher noticed and came out and gave Casey a big hug and told him he was so excited that he was coming back to class. I tend to get stuck. Sometimes it’s *ME*, not Casey that can’t turn it around. I learned a big lesson right there. Casey still had to apologize, but from there, Casey was fine.

I got to do one rotation with Casey. Casey’s class LOVES Abby and are super cute with her. It was fun having her with me and they were sad when I had to take her away. After that rotation I tried to find Carter’s class.

No luck. Again, Carter gets the shaft of having a mother that’s insane and siblings that require a lot more out of me than he does. That is a battle I don’t know if I’ll ever come close to winning and definitely one that screws with my sleep about as much as Abby’s breathing.

I ran back and found Peyton’s class (after wandering around in the wrong class like a asshat for entirely too long). Peyton was cute. He saw me and gave Abby the biggest hug. He adores her. When parents would come up to marvel at Abby’s extreme cuteness he’d say, “that’s my baby, Abby, she has DOWN SYNDROME.” The way he says it is so cute. Like it’s not sad or anything, it’s just what it is. But he kind of yells DOWN SYNDROME like he’s announcing a monster truck race. Abby kept signing “more-food” while we were there so I gave her a squeezable apple sauce hoping to unplug her system a little. She took it from me and with both hands SQUEEEEZED as hard as she could. Applesauce all over me.

The event was over and as I was walking out I got stopped by the special needs preschool teacher. She LOVES Abby. She took Abby right from me and said, “you’re going to PE with us.” Love her. I walked down with a little boy with Down syndrome who is 5. He’s ADORABLE. If it weren’t against a bunch of rules and probably a law, I would have taken pictures of him to send to Melissa. He reminds me so much of her son. Those kids are JOY. They are HOPE to me. They’re talking, walking, being silly, etc. Being around them makes me so happy. I needed that so much this morning. Another moment of perspective as the day trudged on.

I could only stay for a little while because I had an appointment with my shrink, Apu. I can’t ever remember his name. He looks JUST like Apu on the Simpon’s.  Mustache and everything. I keep hoping that after our appointments he’ll say, “Thank you, come again!”.  I’ve been thinking that the ADD meds are not helping with the insomnia. Four minutes. He spent FOUR minutes with me. So glad I drove to the freaking other side of Arlington for a FOUR minute appointment.  SO glad he got paid $150 for FOUR FREAKING MINUTES. Time to fire him, too.

I get home for the sweet sweet five minutes before I have to pick the kids up from school. The front of my house is COVERED in stink bugs. One of them attacked me. After I got back from picking the kids up from school I took some detergent spray that the internet had promised me would kill them to the outside of my house. Turns out, it just pisses them off. And they FLY. I must have angered a nest of them because they were EVERYWHERE. It was a 100% Alfred Hitchcock “I’m going to get eaten by bugs while my children watch” scenario.  I played the part well, too. I screamed and ran inside. They were ON ME. I threw off my jacket and REALLY REALLY wanted to just climb in the shower and cry and suck on my thumb like Jim Carrey did in Ace Ventura (here’s another fun fact, did you know that Jim Carrey used to write funny notes to Tupac while Tupac was in prison?). But I had to get Carter to his dentist appointment.

Carter didn’t even need a freaking appointment. It’s because that kid’s system is so freaking sensitive that the new crown he had put on on Monday didn’t “feel right”.  He said it hurt him. But not when he was playing basketball or running around. He had gone to the school nurse twice about it. I basically  took him just so that I could say I did.

Upon getting out of the car to go inside, one of the kids kicked out a pile of trash right into the wind. Awesome.

If you’ve never taken four kids to a dentist appointment, let’s just say it should be on your bucket list of amazing. You can take my kids for the full affect. “Fred the Movie” was on in the waiting room. So Casey screamed and hid under the chairs. That other people were sitting on. No joke.  I couldn’t blame him though, that movie is quite possibly the worst thing in this world. Carter was in the dentist chair for a LONG time because he was refusing to let the dentist touch him. The hygenist finally called me back to see if I could help with the process. I grabbed Abby and just as I did dumped the entire contents of my diaper bag. So much trash, old beef jerky and cinnamon bears. Gross (kay not really, I was saving the cinnamon bears…and to be perfectly honest with you…the old jerky). 

We get back there and the dentist melted when she saw Abby. One of those people who just LOVE kids with Down syndrome. It was super cute. She immediately asked if she could hold her and held her the entire time we talked AND while she was talking to her next patient. So so cute. Carter was fine so we made our way out. Casey was standing on the chair pleading for me to buy him a train. I had forgotten that I had told Casey that I would buy him a new train after his next appointment if he didn’t need to be knocked out. A savings of $350! Uhghghgg. He thought it was his turn to get his special toy. It wasn’t. So he freaked out. I drag him out while I was carrying Abby.

After we got home I do what I always do- I checked on Kamryn. I had gotten a letter from Kelli this morning, but hadn’t had a chance to read her updates. Just as Abby started to cry and my stress was rising, I read this:

“Last night I woke up to the soft sounds of a baby crying. It was my baby. I got up and comforted her, she settled down and looked around for a while. My heart was filled with joy at her small voice. Oh, I’ve changed a couple of diapers too.”

She hasn’t heard her cry in a long time because of the tubes for the ventilator. Imagine that. Being filled with joy at hearing your baby cry. Being able to change her diaper.  Perspective again. So I grabbed Abby and held her for a long time. And cried. Happily.

As I did, I scrolled through the status updates and learned that Charlotte’s family is FULLY FUNDED! And I cried again.

Days like these. Today wasn’t bad. It was hard, but it wasn’t bad. I learned a lot of things that  I wouldn’t have otherwise if things had gone as planned. And because A LOT of it was really tough, it made the good parts SO MUCH BETTER.  Kind of a one day analogy of life. Right?

17 thoughts on “Days like these.

  1. I like it a lot. You are a trooper and I'm really glad you enjoyed the good parts of your day. I was a little jealous when I read about the dentist holding Abby. I think I've only held her once which is largely due to the fact that I always had a 300-lb. baby in my hands. And by the time you get back, I will be holding another.

  2. I'm so sorry you had such a LONG day! I had a crappy day and listening to the rendition of your day did make me laugh out loud (and I'm sorry for that!) Thank you though…it helped put me in a better mood and put things into perspective. I cried too when I heard about Charlotte's parents!

  3. what does it say about me that the thing that stands out the most is that you actually walked to the school? People actually do that? like, don't drive?and I was waiting for you all last night…and your life? sounds like mine…you know, without autism thrown in the mix

  4. I want to hug Casey's teachers. They sound absolutely amazing. I'm with Jill, I'm a little jealous of the dentist getting to hold Abby, too. I'm so glad that your friends have had success. That is the best thing I've heard all day.

  5. I read it! I liked It! It's always nice to get a little perspective. I like you and I miss your stupid face, too. I emailed you all the pictures I've tried to text you.

  6. Kelly, I'm sorry for standing you up for our creep fest. My kids want to go to Dianeyworld this summer, I want to toilet paper your 'neighbors' house with you. I only freaking walk to school because it's easier than trying to find a parking space at the school. I refuse to parallel park my Sequoia. Plus, every time I open any door to the truck, a mountain of trash falls out.

  7. What a day. My goodness. I'm sure you already talked to your doctor about Abby's constipation – did they talk about Miralax? (most do reccommend it) I'm currently working with Grant to find the right dosage for him. He's not constipated in that he goes pretty regularly, it's just more difficult. But I've been reassured that Miralax is something we can give him often – that it won't mess things up in the long run which I was concerned about. And I love that you could just fire that unreliable aid. I'm such a pansy wuss about things like that – I would have let her walk all over me and paid her for the privilage. I love it when I see the 'I don't take crap' attitude in others because it's something I definately need to work on. Of course, if the moment is right (read: PMS) I can usually speak my mind better, but then it makes me cry and then I just look like a fool. I'll just call you to deal with stupid people in my life, okay?I'm glad to hear that baby Kamryn is doing well! I remember Grant being intubated after his esphogus surgery – when they finally took it out he gave a hoarse, pathetic cry but it was kind of wonderful since we hadn't heard anything from him since he was born. Your a good friend to that family!

  8. your day! yowzers! and applesauce to loosen up? really? isn't it part of the brat diet when kids have the runs? i'm just confused about all that stuff. my little tate has the hardest poops. we have to help pull them out. TMI i know. well bless you x100 lexi. you're a trooper. and soooo glad to hear kamryn is doing well. definitely puts life into perspective when you read something like that.

  9. Hey how does anyone manage with more than one child! Can't even imagine….Glad you found me somehow. How old is your Abby? When Kayli was little I gave her exactly one prune/shot of prune juice per day and when she started solids We began making homemade split pea soup with ham, potatoes, carrots- very thick- which she loved so much she ate it everyday until she entered Kindergarten! This regimen kept her pretty regular but even so she was always an every other day popper :)Now we're friends after that little intimacy….Thanks for stopping by and I'll keep reading too.

  10. Doesn't applesauce contribute to constipation? Apple juice would help get things moving, but there's something about the difference in constitution that makes applesauce do the opposite.I enjoy your blog while in constant wonder of where you find the time and energy. Keep writing!

  11. I learned of your blog today am so glad I stopped over… my life is not nearly so eventful as yours and I can't relate in a lot of ways, but I've really enjoyed reading a few posts and feeling almost like breathing a breath of fresh air as I do. Your blog inspires me to be more honest and down to earth on my own and with myself! Trash falls out of my car whenever I open the doors too 🙂 Glad to have found you- thanks for sharing yourself and your family! PS… an autism Mom I enjoy reading (doesn't look like it's in your sidebar) is Nicolette at Momnivore's Dilemma 🙂

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