It’s been one year since a nurse last set foot inside my house. Many times since then, I’ve prayed for the return of nursing care, but according to all insurance guidelines, Fulton is just too healthy to need the assistance. I’ve modified our school days, tried to be consistent in my daily routine and just done the best I can over the last twelve months.

A while back several bloggers did “a day in the life” type posts where they detailed their lives down to every diaper change and runny nose. I have tried a couple of times to write such posts, but both times the days got away from me and I couldn’t remember up from down by the time I sat in front of my computer. But yesterday was one of our most relaxing days in a while, almost unusually so, and so I jotted notes as I raced through the morning, puttered past afternoon responsibilities and coasted to bedtime.  I had hoped to take more pictures, but it wasn’t that relaxing of a day.

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{funny}

So now, for the noisy, a look inside a day at our house where I try to manage homeschooling, homemaking, medical care and not dying while wearing clean clothes.

Lousy nights sleep the previous night so I skipped the 5 a.m. alarm (which my husband recently set to some horrible T-Pain song) and slept in until 7 a.m. Tony slept in too since he was going to the dentist before work.  All of this was made possible by Fulton and Teddy sleeping in.

No sooner downstairs then Teddy and Fulton screamed to be carried from their beds. I placed Teddy on the couch, then disconnected Fulton from his bi-pap and feeding machines and carried him onto the tumbling mat we keep on the floor.

Got coffee and realized we forgot to run the dishwasher, again, at bed. It had to wait until Tony got out of the shower. Pumpkin spice creamer soothes my pain and I quick trot back upstairs to get dressed.

At some point, the older children stumbled downstairs and got themselves juice and read books or tried to steal Tony’s attention from me. As we talk in the kitchen Addie came in, we asked her to give us a few moments alone so she stomped away only to try to sneak back into the dining room and eavesdrop on our conversation.

Tony leaves for the dentist and I carry Fulton back to bed to straight cath him. (Don’t worry, it’s not as uncomfortable as it sounds. He’s used to it. I mean, those first few times he screamed like a banshee and I wanted to die but now it’s fine.) I get him his iPad, elevate his bed and sit there at the mercy of his bladder for about 15 minutes or until it’s empty. Of course, five minutes in, Teddy screams that he needs to go potty.

I holler for Addie, who begrudgingly puts down a book and sets Teddy on his little potty and walks away. I finish with Fulton and empty the urinal in the toilet to find Teddy still sitting there waiting for his M&Ms. I take him off and put him in underpants and set him back in the living room.

I put Fulton back in a diaper, put him in his back brace and hoist him into his wheelchair. He drives to the dining table and we all have a mish mash of food for breakfast because we’re out of milk and I don’t want to make eggs knowing everyone will complain about eating eggs “again.”

Between 8:30 and 9 a.m. I assist the little boys with their meals, eat a gluten-free pop-tart and read a camera manual. Then clean the table with the older kids assistance. They unload the dishwasher. The older three also dress and come into the school room by 9 where Byron leads the Angelus and they started their school work.

Teddy played with Lego mini figures on the tumbling mat after a quick change of clothes and Fulton drove back to his room to get dressed, among a litany of other things which include getting meds and 180mL of fluid via g-tube. “Stop picking your nose! Do you need some suction machine?!,” works every time. Once dressed he’s also put back into his back brace and foot/ankle braces. By 9:30 we’re done and he’s parked at the computer to play a little StarFall while I correct some of Byron’s work.

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Fulton’s schedule; I still forget stuff.

I am seated for two minutes when Teddy screams to get on the potty. I rush to get up and get my head stuck in Fulton’s headphones cord. I break free and get Teddy to the bathroom. Fulton commences screaming because I’m not there and everyone stops working. A few minutes later, I yell at everyone for the first time and we regain order.

From then until 10:30, snack time, I alternated between checking work, helping Fulton and keeping Teddy’s pants on, which was a more impossible task that day for some reason.

The kids sense snack time by some internal clock and the older three all run for GoGurt like survivors in a zombie movie. (Because this is only the second time ever I’ve bought GoGurt and they’re loving it.) Teddy refused a snack, probably because he’s too busy taking his pants off again and I help Fulton eat some yogurt. My mom calls. We talk for about 15 minutes which was long enough for Teddy need to go potty again and actually take a poo. So we chat about stuff while I clean him and the little potty. She says she can call me back when I’m not busy but I assure her, that’s never happening.

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Expectations; we just started this chart this week and you’ll notice still no stickers. Not an oversight on my part.

I hang up, jump online to link up with Hallie and check Facebook before resuming school. Fulton looks at a book, but then I give him his iPad to keep him quietly entertained while I read to Edie and go over her CCD work. Byron works on Latin,  and Addie, an online writing program….with lots of complaining.

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{happy} Finally getting the ten commandments down.

I finish with Edie and Fulton drove back to his room for a change, which requires a complete new set of clothes. In the middle of doing so, Teddy screams he’s peeing so I leave Fulton on his bed (with rails) and stick Teddy on his potty before I finish dressing Fulton. “I got some pee pee outside the potty,” which is Teddy talk for I peed all over the floor in front of the potty and am wiping my feet through it. I clean up Teddy, carry Fulton to the mat and clean up the floor.

I sit down and have a seltzer with my iPod.

I crawl on the floor with Fulton and do some lower extremity stretches. I’ve been bad with keeping up with his stretches and he feels stiff. I feel guilty. Teddy and Fulton argue over mini figures.

At 12:30 I throw some meat, cheese, crackers, egg salad and cantaloupe slices on the table and call it lunch. We start talking about bento boxes and spend 10 minutes online looking at Star Wars bento boxes. Addie says she wants a bento box. I remind her that those fancy meals don’t make themselves. They eat an entire cantaloupe.

We cleared the table and waited for Addie to finish her math and Latin so we could leave for the library. I realized Fulton’s wheelchair’s battery was almost depleted so I loaded him into his stroller and plugged in the chair. We arrive at 1:50 p.m.

I picked up ‘Dad Is Fat’ which I placed on hold. I met the kids at the far end of the children’s section where Teddy’s “talking” is least disturbing to other patrons and spent ten minutes reading and shushing everyone before realizing Teddy had taken advantage of his travel diaper and pooped. I carry him to the bathroom and clean him up then promptly allow him to roll all over the floor while I wash my hands. We checked out about 40 books.

I still needed to pick up milk and cheese from our organic co-op so off we drove. Teddy napped, Fulton kept screaming for Addie to pick up the books he was dropping and Byron created a version of ‘Twinkle, Twinkle Little Star” where die rhymes with sky.

We were home around 4 p.m. and honestly, despite the mountains of laundry and numerous other chores, I just wasted time on Facebook and reading because I was beat. Family outings tend to do that to me. And since Teddy stayed asleep in the transfer to his bed, I enjoyed the quiet. Everyone enjoyed the new books, even Fulton from the mat where I laid him.

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{pretty} Is there a more beautiful sight than a child sleeping?

As dinner time approached I cleaned out our fridge for leftovers and my word what a ton of leftovers we had. Only downside to having a large fridge is all the food we forget about. Once Tony got home, we heated plates for everyone while he relayed the message that we’d have to switch pediatricians because our practice no longer accepted our insurance. I poured some wine.

After dinner, the older kids loaded the dishwasher and took showers. Tony went over Latin with them as well. I re-loaded the dishwasher and then took them each aside to show them the “proper way to do it.” I unpacked a couple of boxes of medical supplies I was tired of tripping over. Then I sat down and checked several days of Addie’s math. Usually this isn’t an issue, but I realized we needed to go over some things together and made lots of red notes for the next day.

Although we’re trying to get into the habit of saying family prayers right after dinner, we constantly forget, so after showers we sat down for prayers around 8 p.m.

The kids wanted to offer prayers for me. “We should say prayers for mama to not be grumpy and then tomorrow say prayers for mama again once she’s happy.” “Byron I’m not grumpy!!!” He then proceeded to imitate my grumpy voice and actions. I cut him off and we begin prayers. Teddy starts singing the Spider Man song .

After prayers I carry Fulton back to bed. Tony already got his meds and bag of fluid for overnight set up. I hear Tony try to read while I hook Fulton up to his machines, but Teddy isn’t a fan of Lord of the Rings. Tony carries Teddy back to bed and takes the older kids upstairs to read. I finish tucking in the younger boys and then sit drinking wine at the computer and kill time on the Terrible Real Estate Photos tumblr while constantly rolling Teddy over. (This is what happens when Teddy naps anymore.)

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{real}

Eventually, I go upstairs, tuck in the older kids and crawl in bed to read. I set my alarm for 5 a.m. By 10:15 p.m. a nuclear explosion couldn’t wake me.

Today, I have a therapy appointment, laundry to catch up on and scouting in the evening. It will be all of yesterday (minus the library) with a bit more. And while absolutely everything won’t get done, I’ve learned to get most of the important stuff done. Thankfully, my older children are self-sufficient in many things. I keep hoping things will get easier but for now, I just pray to keep going.

If you’re still here, thanks for following along and ignoring my constant misuse of past and present tense. Any questions? Swing back to Like Mother, Like Daughter for concise posts from bloggers who took the time to take nice photos. Or check out Kendra’s link up to compare my homeschooling day to others.

{p,h,f,r} Just Another Day In The Life

13 thoughts on “{p,h,f,r} Just Another Day In The Life

  • 10/03/2013 at 10:55 am
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    Thanks for linking up Kelly. I love your chart. I’m pretty sure we wouldn’t have any stickers on it either. But it’s good to be aspirational right?

    Reply
  • 10/03/2013 at 10:56 am
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    The picture of you and your children is so beautiful! I can’t imagine having a child with so many health trouble, but I bet you couldn’t either before it happened 😉 I am inspired by your perseverance in this.

    Reply
  • 10/03/2013 at 11:55 am
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    I bet you get a lot of people telling you things like, “I don’t know how you do it all!” or “You’re such a SuperMom!”. And yet, I’m sure you don’t feel like some sort of SuperMom, day in and day out, regardless of how amazing you look from the outside (you do, truly). I don’t necessarily hold to the old adage that “God gives us only what we can handle,” because I’m not so sure it is Him who gives us hardships or challenges. But I do believe that God gives us the grace we need to handle anything.

    And I hate it when my kids call me out on being grumpy. I don’t want to be that mom, but some days… sheesh.

    Reply
  • 10/03/2013 at 3:23 pm
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    Thanks for sharing! How do your older kids deal with Teddy and Fulton’s extra demands on your time, and “extra” attention away from home? We are having a hard time with those issues and uor youngest who is ASD

    Reply
    • 10/04/2013 at 4:03 pm
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      When my older children were younger they went through spells of being jealous of all the extra attention Fulton was getting; mind you, this “attention” was therapists, deliveries of medical equipment, etc. I don’t know when, but eventually they got over it. Now they just accept that it’s how things are and that Fulton needs the extra attention. It’s only been within the last year that my older two seem to notice all the stares and attention we get when we go out as a family. Since Fulton’s wheelchair is “normal” they get annoyed when other people stare. As I spend a lot of time with my kids (homeschooling and all) I usually can pick up on when they’re having a hard time with something and we can talk about it. We’ve always tried to explain SMA and Fulton’s limitations to the kids in very basic terms, increasing knowledge with age / as appropriate. All I can say is give your other kids plenty of your time and help them to understand the differences between what they can do independently and verse what your special needs child can do, and let them be a helper for the younger child. That helped us a lot too.

      Reply
  • 10/03/2013 at 9:22 pm
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    Incredible! Your “real” photo really touched my heart. Your sweet little boys are so blessed to have such caring parents.

    Reply
  • 10/04/2013 at 12:03 am
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    “which was long enough for Teddy need to go potty again and actually take a poo”. Miss your poo-filled parasite days, do you?

    I love how real you are.

    Reply
  • 10/04/2013 at 2:21 pm
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    Did the grumpy prayers work? Were there prayers of thanksgiving the next day?
    Perhaps there was a little bit of teasing but I think it’s sweet that he wanted to pray for you.
    You and Tony are good parents.

    Reply
    • 10/04/2013 at 4:07 pm
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      I’m often amazed how unconditionally my children love me. My youngest daughter would offer our family prayers for me every night if we let her. When I see how forgiving they are of my flaws, it certainly motivates me to be a better, nicer mom.

      Reply
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