Tuesday, September 24, 2013

Miracle Myra is FOUR!

This is sort of an odd day for me.  Myra seems like she's been around forever, yet I can't wrap my mind around calling her four.  She is, in fact, a large four year old.  So, that I can assure you!  Carrying her 34lb- 40inch self is getting harder and harder for any period of time.  I loved carrying her in my sling or wrap.  I just cannot do it anymore.  So, in that way she very much feels like four.

But, I simply cannot believe her birth was a whole four years ago.  I remember that day so clearly.  It is probably the worse day I've ever experienced, yet that experience has changed the course of my life forever.  In many ways I wish I could take it back and change it.  In many ways I wouldn't dare, for the person I was fours years ago on September 23, 2009 is no longer living.  I sort of had a birth of my own on her birthday four years ago.

(If you don't know her birth story you can read it HERE.  Her step by step story is typed below her photo in the right column but you can also read more about her MRI results HERE and her diagnosis HERE and my perspective HERE and HERE.)

I'm almost as a loss of words today.  It's very hard to describe my feelings.  I honestly never thought we would be where we are four years later.  I truly believed Myra would be running around with her siblings and chatting up a storm by now.  Don't get me wrong, we celebrate each and every accomplishment - ask my Facebook friends!  And I've learned well that milestone lists are not what is important in life.  I've seen compassion for people who are different grow in my children, and that has been amazing.  I look at each and every child around me with a sense of wonder.  Their abilities amaze me, their speech, their laugh, their toddle as they learn to walk, their big noggins.  I see things through different eyes.  This I like.  I'm more appreciative.  More observant.  More in awe of God and His creation. 

And I feel like I can actually see through Myra, to her heart.  Through the cries, through the screams, through the protests during therapy.  She's a super sweet personality.  Very laid back, in fact.  She loves to observe, but if you involve her in something, she lights up.  She loves people, loves listening to them talk and interact.  She loves music- Celtic, country, lullabies, guitar, banjo, men's voices, bells.  Most people either see her crying or staring off into space.  But, she's listening.  She's interacting every way she knows how.  She may not react when you say 'HI', but if you just stayed a moment longer, often a smile will erupt just as you walk away.  Her reactions are delayed, but they are there.  She loves when kids play with her, play with her toys, touch her hands and face.  Many kids at church or on outings come up and ask about her hearing aids while touching her ear or start playing with her toy.  Most parents shoo them away, but she loves that.  They don't understand it's the only interaction with other children that she gets besides her siblings.  I can see her light up when her 3-year-old cousin comes to say 'HI' as she starts playing with her toys, touching her hands and talking to her.

Myra is the best cuddle bug.  She curls up in her dad's arms, my lap or envelops one of her siblings completely as they try to manipulate her as she's gotten so big.  She loves to listen to our heartbeats and is content for so long with that.  She feels safe.  Her vision isn't great, so when she goes for periods of time in her wheelchair or on the floor and she isn't hearing constant chatter, because the kids are outside or I'm cooking in the kitchen, she cries because she's lonely.  She is a people person.  I wish you could all know her like I do...

The fact that Myra isn't mobile or verbal stinks.  Truly.  But, the biggest heartache isn't that I can't mark it off a chart to say that she did it, but that she cannot express herself like the rest of us.  She's in there and can't tell us all she's thinking and feeling.  She's trapped in a body that doesn't do what it should.  When she's crying and we can't figure out why, I'm just heartbroken.  That is the biggest thing to swallow.  That no one else knows her like I do, and I don't even know her like God does.

But, can't you see her spunk?  :)

Our pastor shared a vision with us when she was only hours old.  He said she was around the age of three and was dancing at the alter with dark, curly hair and everyone could see the glory of God on her.  I have chosen to believe this vision wholeheartedly and have tried hard to not to put God in a box.  I'd like to think that this means she is healed completely of every single disability, but I know that that may not be true.  But, I am still waiting.  Despite the fact that she's now four, I'm still going to wait.  God is not one to break His promises.  But, I think of the possibilities if she is healed completely- the people I would tell, the story she would have, the vast number of people that would witness God's healing hand and how many people this could affect in their walk with God.  The truth is, she IS a miracle!  We HAVE seen God heal her in so many ways already.  I HAVE told many people and she IS affecting people's lives, just as she is.  So, all I can say is, even though my little human brain can make plans and see the benefits of a completely healed little girl, God often uses those of us that are broken to make the biggest statements and touch the most people.  And though I'm not completely ready to let my dreams of complete healing go, I can accept God's plan for her life. 

If I've learned anything in these last four years, it's been that His plans are greater than mine.

This song sings my heart....

"Even If" -Kutless

Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

Lord we know Your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

You’re still the Great and Mighty One
We trust You always
You’re working all things for our good
We’ll sing your praise

Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come

You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn’t come
Even if the healing doesn’t come

And even if the healing doesn't come in this lifetime, it is coming. 
I can rest in that.

I love you, Myra.  More than you will ever know.
But my love is incomparable to HIS.

Monday, August 19, 2013

Day 1 DONE!

Finished with Homeschool Day 1 and completed and graded everything by 2:30pm!  Now, we aren't doing our full school schedule, but doing chores and getting back into routine is taking quite some extra time.  We got done all I had planned, so I am pleased.  Despite feeling like I'm only half ready for school this year, we had a fabulous first day!

Tomorrow we will add in flash card work, poetry and scripture memorization and our Answers in Genesis apologetics curriculum.

Next week we will add in science, history and Character Quality Language Arts.  I still have lots of planning to do with these.

First Day of School photos, unedited and unplanned....

 Boo Boo's first day of 1st grade!

Angelica Pickle's first day of 2nd grade!

Princess Pea's first day of 4th grade!
 Sid the Science Kid's first day of 6th grade!

I also made over seven phone calls this morning taking care of a few things since I've been gone three weeks.  We realized last night that our monthly order for Miracle's g-tube supplies and formula hadn't arrived yet.  We have supplies for TODAY and that's it.  They had some excuse about Medicaid changing things, but it's ridiculous UNacceptable, no matter what excuse they have.  A local branch will bring us supplies to last a few more days as they work out insurance issues, but nothing will arrive before 10:30AM tomorrow.  I will have to throw some baby food together for her morning feeding to get us through the morning.  That added some extra stress to my day! 

Had to throw in these pictures from our church's carnival yesterday, they are so cute!  I think my 10 year old is too old for face painting, but whatever.

See other First Day of School photos at the Not Back to School Blog Hop 2013!

Friday, August 16, 2013

Day in the LIfe 2013

Well, I will post my schedule here for those of you who are interested to know what I do all day with five kids and how I fit in education, therapy and fun!  You can see my curriculum choices listed HERE from last week's blog hop!

6:15 Mom Showers - If I don't do this first thing, too bad... so sad stinky!

7:00 Devotions - It has always been a struggle to get into a morning routine for me, but I won't give up trying!  But, this often gets pushed to the late evening time, especially if I decide to sleep in.

7:20 Make Breakfast
  • Sid the Science Kid (10) collects the laundry before he comes downstairs.
  • Princess Pea (8) cleans the upstairs bathroom.  
  • Angelica Pickles (7) and Boo Boo (5) are supposed to tidy their rooms.  
  • Hopefully Miracle (3) is still sleeping at this point!

7:30 Kids up/Eat/Morning Bible together - This consists of reciting our Family Rules with Bible verses, reading a daily Proverbs and discussing, pulling up a worship song on YouTube and worshiping together and our Answers for Kids AIG curriculum. 

8:00 Helping Habits (chores for the kids), Mom's chores (laundry started)
  • Sid the Science Kid puts his dishes away, cleans the bathroom and brushes his teeth.
  • Princess Pea hand washes the dishes and brushes her teeth and hair.
  • Angelica Pickles puts her dishes away, brushes her teeth, wipes down the table and starts on copywork, Explode the Code and math flash cards.
  • Boo Boo feeds the cats, empties the trash cans all over the house and brushes his teeth.

8:15-9:30 Angelica Pickles' School (2nd)
  • Memory Verses
  • Princess Bible
  • Explain Math lesson (do new stuff together, leave review stuff for independent work later)
  • Review old memorized poems and read new poem 3x together 
  • Review All About Spelling Word Bank/Cards and do All About Spelling 3 lesson
  • First Language Lessons
  • I read aloud to her
At this point Angelica gets a 15min break and then finishes her math independently and does XtraMath on the computer. 

While I'm doing school with Angelica Pickles...
  • Sid (6th) is working through his school work independently with scheduled breaks.
  • Princess Pea (4th) is working through all her independent work and starting subjects, setting things aside as she needs my help.
  • Boo Boo (1st) is reading or playing on his own.  He does well with this in the morning.  He desires more attention and entertainment as the day goes on.
  • Miracle's nurse arrives at 9:00 and wakes her and starts her day.  I'll steal kisses and cuddles throughout my day, but the nurse will do her exercises, medicine, brush her teeth, etc.  This has been amazing for me to get done what I need to get done, but I will miss my long summer cuddles on the couch with her every morning.  The nurses often had to find things to do the first hour they came because I wouldn't give her up.  :)

Before I move onto working with Boo Boo, I change the laundry.

9:30-10:15 Boo Boo's School 
  • Sight Word flash cards
  • Handwriting
  • Leading Little Ones to God (I'll grab Angelica Pickles for this)
  • Character book like Help Me Be Good books by Joy Berry
  • Math lesson
  • Reading with Bob books, All About Reading lessons or just an early reader

While I'm working with Boo Boo...
  • Kyler is still working independently in the office behind a door.  Because at this point the cat and little brother are more appealing than the next thing on his list.  :)
  • Princess Pea is finishing up all she can do on her own and will likely get a few minutes to play with Angelica Pickles upstairs once Angelica finishes math and XtraMath.  They usually get along because they have such little time together.

10:15-11:15 Princess Pea's School

  • Math Lesson - I will check her work that's done and teach anything new or that needs reviewed.
  • Wordly Wise or Vocabulary from Classic Roots- These are always done different weeks.  I will be teaching VFCR but WW will mostly be done independently.  I'll just check her work.
  • Character Quality Language Arts - Depending on the day this is either independent or I teach.
  • Easy Grammar - This will likely complement her CQLA grammar for the week, so I should just be checking her work here.
  • Progeny Press - We will likely only do a book quarterly.  But I'd like to do this with her, even if it's mostly oral.  Or with Sid if they do the same book.

While I'm working with Princess Pea...
  • Sid is still working.  Poor guy.  He's a good worker, though.  And I promise, he has lots of breaks built into his schedule!
  • Angelica Pickles can work on Starfall.com or educational games on the iPad IF she did well during her school time. Meaning, finished it all in a reasonable amount of time, threw no tantrums and had a good attitude.  I guarantee this will be hard for her to earn.  School is challenging for her and her attitude makes everything more difficult.  
  • Boo Boo has the same opportunity for 15 minutes of fun.  Then he and Angelica will play together.

11:15-12:00 Angelica's School Again
  • Reading - This will be All About Reading lessons, Progeny Press, readers...PRACTICE!
  • JBQ - I will pull Boo Boo into this most likely.  At least at the beginning of the year.
  • Explain Language Smarts lessons - She will finish this first thing after lunch if we don't complete it together.

While I'm working with Angelica again...
  • Hopefully Sid will have a big break and be done with his work.  If he did well working all morning, he will get iPad time.
  • Princess Pea will complete any lessons we didn't finish together so all her individual school is done.  She will get 15 min of iPad or computer time, also.
  • Boo Boo can play with his Tag or play with Sid when he's done with school.

**Last year we tried this iPad/computer time throughout the day when you earned it and it didn't go well.  I'm going to try again, but I won't hesitate to take it away until after dinner like last year.**

12:00-12:45 It's lunch! The kids have Helping Habits before and after lunch.
  • Sid and Princess Pea tidy the two main rooms and help prepare lunch.
  • Angelica has to tidy the kitchen and wipe down the table.
  • Boo Boo has to get vitamins and silverware for everyone.

We eat!  This is our "Character Hour" and we read a picture book, novel or Bible story centered on character.  In the past we've read through Storytime with the Millers, A Hive of Busy Bees, In Grandma's Attic, Hero Tales and other such books.  I'm planning to use Our 24 Family Ways as a guide and fill in books that complement character qualities we are studying.

Then we all put our dishes away and...
  • I fold laundry.
  • Sid washes the dishes by hand.
  • Princess Pea wipes down the stove and counters.
  • Angelia wipes down the table and Boo Boo helps me fold and then sits down with me.

Our afternoons don't always look alike because of Miracle's therapy schedule, swim lessons, co-op and dance class, but here is our general afternoon...

12:45-1:30 Boo Boo's School again

  • Explode the Code
  • All About Spelling1
  • Five in a Row books and activities
  • Language Smarts
  • JBQ- If he didn't already do this with Angelica earlier.

While I'm schooling Boo Boo the other kids are finishing up any work not completed in the morning, playing outside or maybe watching a video that goes along with our science lessons.

1:30-2:30 Tapestry of Grace Year 2 with the whole crew.  This is our read aloud time.  The older kids have additional reading lessons scheduled into their independent work, also.  We do mapping, crafts, cooking, etc.  It's hard to keep this to an hour!

2:30-3:15 God’s Design for Heaven and Earth with the whole crew.  We not only read the lessons, but watch videos, read picture books and do notebooking pages.

3:15-4:00 All About Spelling 5 with Sid and Princess Pea

Changes to our schedule:

  • Monday we leave early for dance so we don't do AAS.
  • Wednesdays we have ART DAY and spend the hour before dinner reading about artist and listening to composers, doing art projects and just having FUN!
  • Thursday we leave early for swim lessons most of the year, so we don't do God's Design or AAS and do Tapestry at Miracle's therapy session that afternoon.
  • Friday we have co-op 1/3 of the year, so we have a shortened schedule for everyone, skipping all extras and just finishing core subjects.  I keep this shortened schedule year-round so we can do things like Nature Walks, field trips, extra art lessons and visit Grandma.  On weeks we don't have co-op, our ART DAY will be on Fridays so we have more time.

And then, our day is done!  Well, school day.  The nurse leaves at 2 or 3, so sometimes the afternoon drags out if Miracle is cranky or wants a nap in my lap.  Such is life.  But, last year we stayed on schedule pretty well!  Grading work was my downfall.  I kept up the first semester, but by second semester I found other things to do instead of grading.  I'll need to just focus better this year so I don't get behind again.  Ideally I can grade if any child doesn't use their entire allotted time or during therapy, swim class and dance.

I have also scheduled in six 'make-up' weeks into my school year.  These are extra weeks besides the 36 I have scheduled to simply have a break from school. But, if lessons weren't completed the weeks before, those are caught up. Christmas week is our only scheduled non-make up week.  This worked great for us!  Even if the kids had two things to make up each day from the last 5 or 6 weeks, it was still a break from their regular schedule and they got to play a lot more, we went to the library, played outside, visited Grandma, etc.  Then, I wasn't constantly behind on multiple subjects.  How I accomplish this is, at the end of each week of school, I take all four kids' school check lists and highlight what wasn't completed.  The following weeks we just keep moving forward in all lessons.  The week of break, I take all those highlighted lessons from the last 5 or 6 weeks and divide them out over the week.  And, we are caught up!

I love homeschooling and can't think of anything better I would rather be doing with my time!

Check out other homeschool schedules at the Not Back to School Blog Hop!