May 29, 2015

Ordinary Miracle Today

Yesterday Evie sincerely inquired of me the question I often ask her, "What did you do today?"

I couldn't quite answer her with anything substantive.  There is not a sound bite that can sum up my day.

As I went to bed last night I was thinking of the beautiful lyrics to the song by Sarah McLachlan, Ordinary Miracle.  That was my answer to her question, I just had some "ordinary miracles." I am grateful for those days.  I have plenty of days that are extraordinary and many that are down right crazy.  My special ordinary days are every bit as miraculous to me.  I thought I would leave my blog open all day long and come in to the computer every hour or so and jot down my doings, as a record for the next time Evie asks.  Luckily, today was an easy day.  It was completely ordinary.  My kind of ordinary, a special ordinary. 

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Insomnia from 2-5:45am.  I finally pull my groggy face out of bed at 6:20.

Go into #4's room and do his morning stretches, change a very robust diaper and dress the big boy - threading his legs awkwardly into his shorts and holding his body up and attempt to put on his shirt as his body flops back down.  Lucky start - no screaming yet.

Clean around g-tube.  This one has been leakier than others. Check volume of g-tube balloon and add additional fluid since it is low.

Apply cream to his athletes foot in between his toes.  (a common side effect of wearing non-breathable plastic orthotics with no friction or movement in his feet because he doesn't walk)

Get #3 and #1 up for school.

Make fancy breakfast because #3 is sure her teacher told her to have a 3-course breakfast that morning to be in prime form for her SOL testing.

Transfer #4 to wheelchair.  Fit him with his orthotics.  Scrub down his glasses.

Feed #4 his breakfast one bite at a time while reading "If You Give a Pig a Pancake" over and over again at his insisting, blinded by the morning sun coming in the back windows.

Pack lunches for #1-3, remembering who will eat what fruit.

Feed dog.

Wake up #2.

Load up #4's backpack with changing supplies and two formulas for mid-day sustenance.

Wheel #4 out to his bus.

Sign forms for #3.

Hug for her and send her off to the bus.

Eat breakfast with #1.

Fill out more forms.

Send #1 and 2 back upstairs to brush their teeth.

Welcome sleepy #5 to the kitchen chaos with a big Good Morning hug.

Send #1-2 off to the bus.

Visit with husband and #5 as they eat their oatmeal together.

Check emails, respond to a few regarding end of year party and teacher gifts.

Kiss hubs off to work.

Write letter for #3's time capsule (that was supposed to be send in at the beginning of the year inside the time capsule but wasn't so teacher can sneak it in before she opens it)

Call (4th attempt) to the office that manages #4's disability benefits on a point of confusion.  Finally get a hold of the person that realizes there was a "filing error" and confusion is finally cleared and the annual administrative threat of losing all of #4's benefits is now dissolved until next year's same annual event.

Call pediatrician to make some appointments and follow up on a medical form for #4.

Rotate laundry.

Answer call from pharmacy telling me they still can't locate from their supplier an essential medication for #4 that he has been taking for over a year.

Call ortho for post mri followup for the broken foot of #2.

Poll Special Needs moms for specialist preferences for #4's hip problems and spinal followup.

Play hair and makeup with #5.

Do my Jillian Michaels Ripped in 30 dvd.

Gasping for breath, limp depleted to shower.

Renew car registration.

Run dog to his doggy neighbor for some play time.

Walk #5 to bus.

5 minute visit with another mom.

Pay doc's office for form fee (#4 comes with 6000 annual forms.  I think I fund their annual Holiday party with all of his form fees)

Take a friend to lunch for her birthday.

Do church-related visit.

Sit with another friend in her car and enjoy a blissful 10 minutes of girl talk with her.

Super fast grocery run.

Run into Hobby Lobby for some project supplies for girls.

Get homemade soup in the crockpot.

Realize I don't have critical ingredient for soup and put that in the fridge to continue tomorrow.

Throw together a quick baked ziti to cook tonight.

Call chiropractor for my back.  (I swore I would never go that route.  I'm clearly desperate now)

Email two potential caregivers for #4.

Make arrangements for driving van to Pennsylvania this weekend for repair. 

Pay bills.

Go through music options for cello duets I am performing with #3 in a few weeks.

Begin to transpose music options.

Give up on transposing effort that is taking too long.

Get muffin makings ready for after school snack (by promise to #4 to get him out the door without a major tantrum)

Email wheelchair equipment guy about brake problems with new wheelchair and discuss new shower chair since #4 just outgrew old one.

Call ortho who won popular vote above and wait on hold for 30 mins to make appointment.

Exchange texts with tennis partner about playing tomorrow in preparation for our tournament on Monday.

Deliver extremely overdue Time Capsule letter to teacher's mailbox at school.  She'll never know.

Chat with another special mom I pass in the parking lot as I leave.

Take dog out of kennel and potty him so he is ready to greet #4 when the bus comes.

Welcome #4 off the bus, take off sweaty orthotics and stretch smelly toes.

Welcome #3 and 5 off the bus with hugs.

Wash hands.

Change a large oversoaked diaper.

Wash hands again.

Have #4 make his requested muffins himself to get his home Occupational Therapy for the day.

Have #3 and 5 make some cranberry oatmeal cookies for a bribery, er, uh, positive reinforcement for the 3/5 of my children that hate baked ziti.  (really? how can anyone not like baked ziti?)

Clean up the explosion from the above two items.

Feed kids muffins for after school snack.

Empty dishwasher.

Get #3 and 5 going on their chores.

Rotate laundry, fold and put away.

Write letter of medical necessity for assistive technology items for #4.

Update electronic forms for #4's respite lodge profile.

Email respite lodge about pending form needed by today for next weekend's stay.

Look online again at music and purchase music that is cello-ready. Download and print 57 pages.

Change #4's bed sheets and empty his diaper trash to try to eliminate horrible odor detected earlier.


Correctly identify source of smell and unclog #1's toilet.

Fielded three robocalls reminding me of different doctor appointments next week.

Go to bus stop and pick up #2 from stop so she doesn't have to hobble home on crutches.

Snack and chat about day with #1 and 2.

Get #1 and 2 doing their chores.

Get #3 practicing her piano.

Care for #4.

Call new pharmacy and wait on hold for 15 minutes to see if they have one of #4's meds that other pharmacy's supplier can no longer get.

Tend to a screaming melt down of #4.

Still tending and trying to get him to play with something.

Still tending.

Put casserole in the oven.

Get #2 on the piano to practice.

Change another large diaper.

Helped #1 with some indexing (transcription of images of genealogical records into a database)

Gathered kiddos for dinner.

Tried to convince #4 the baked ziti was just like pizza.

Perform finger sweep of his mouth to eliminate all traces as he retches.

Throw away magazine that was in front of him that took a direct hit.

Ignore #4 as he implodes into out of control tantrum about not being allowed a dessert.

Put his brakes on as he tries to flip his chair in tantrum.

Continue chatting to the others about their day as we eat and 2 diners mostly stare and fork around their food.

Excuse myself from the table and take the out of control screaming #4 upstairs to bed when all of us have matching jugulars popping out of our necks from the sheer volume.

#1 comes to help be my "getting ready for bed" assistant to #4.  (when he is like this, it takes two)

Tuck #4 into bed and lock up his bed gates and give him his ipad to sooth himself.

Text #1's friend's mom to see if he can join #1 at the hobby shop game night tonight.

Put #1 back on computer indexing and return to the table to encourage #3 to finish her dreaded ziti.  She has to reheat her plate because it is taking her so long to gag down each bite -- all 10 bites I gave her to begin with.

Spoke again with the pharmacy about #4's critical medication. Apparently the patent expired so it only comes in generic now and no longer from original manufacturer. Generic dropped the liquid form and only comes in pill.  Pills don't go down g-tubes. Pharmacist has to call corporate offices to get legal permission to compound the pill into a liquid so it can go down g-tube.  Will repeat this conversation on Monday.  Looking forward to it.

Left with #1 to pick up his friend and drop them at the hobby shop.

Came home and cleaned up dinner.

Checked on #4 who is quietly babbling -- the mode he uses to self soothe.

Cozied on the couch with #2, 3 and 5 with our usual Friday night weekend welcome of a Tetris tournament. (for the record, I am Tetris Queen, but they inherited my mad Tetris skills so there is some tough competition)

Ate cookies they made.

Prep birthday presents for back to back parties for #4 and 5 tomorrow.

Make treats for church potluck tomorrow.

Call husband and tell him to pick up #1 and his friend from the hobby shop on the way home from work.

Husband comes home from work for a quick hello to the other kids before they go to bed. He turns around to pick up #1 and friend. 

Read some Mary Poppins to the girls, have family prayer and tuck them into bed.

Rotate laundry and out of the wet load of whites find a peach glove entirely filled with tiny gravel bits, less the few hundred bits that were laying on the inner floor of the washer.  Left those until the next load.

Return to #4's room and play the maddening "I want that book" game -- he knows exactly what book he wants but you can't figure out what he is requesting to save your life so he just gets more and more upset.  Walked out before I peeled my eyeballs out.  Sent in Evie to be the cavalry.  She found the book.

Send #1 up to his room to get ready for bed and read for a while.

Went for a late night walk with husband and the dog.

I sit and chat as he reheats his dinner.

He eats without complaint.  That makes 3 today.

I get ready for bed and turn on some mind numbing HGTV.

Read for a bit.

Wrap up this blog for the night.

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This might seem like an incredibly dreary, ho-hum or otherwise exhausting day, (and it is!)  Everything that happened today is a beautiful, however ordinary, miracle to me.


It's not that unusual
When everything is beautiful
It's just another
Ordinary miracle today

The sky knows when it's time to snow
Don't need to teach a seed to grow
It's just another
Ordinary miracle today

Life is like a gift, they say
Wrapped up for you everyday
Open up, and find a way
To give some of your own

Isn't it remarkable?
Like every time a raindrop falls
It's just another
Ordinary miracle today

The birds in winter have their fling
And always make it home by spring
It's just another
Ordinary miracle today

When you wake up everyday
Please don't throw your dreams away
Hold them close to your heart
'Cause we are all a part

Of the ordinary miracle

Ordinary miracle

Do you want to see a miracle

It seems so exceptional
That things work out after all
It's just another
Ordinary miracle today

The sun comes out and shines so bright
And disappears again at night
It's just another
Ordinary miracle today

It's just another
Ordinary miracle today

Savor the ordinary.