What We've Been Up To...

It's been awhile since I've had a chance to post.  Life has been crazy as Toby had two hospital stays in April. One for low lung volumes, atelectasis, and backed-up intestines.  The second was for VEPTR - Part II on April 23rd.  So far the rods are staying in place even though they you can visibly see them in his back, they aren't causing any skin issues.  I know prayer is keeping them in place.

So, what else is going on?  All the boys are out of school for the summer.  Toby finished preschool, and will start kindergarten in the fall. 

It's amazing how much he's grown.  This morning, I found him sitting up in bed for the very first time since his back surgery.  He also put on his pants by himself, and is very slowly becoming more independent.  One of my big focuses for the summer are his independence and participating in chores around the house.  We'll also work on keeping up his academic skills, small motor, etc.

The older two boys are also done with school.  Alas, I'm an awful photographer and forgot to take a photo of them on the last day of school (but I will soon, and then I'll have to pretend like it was the last day of school).  Conor won an award for his Regional Invention Convention.  He won a $50.00 scholarship for "Superior Product Innovation."  

The Friday of Memorial Day weekend.  Bruce took Conor and Garrett to the Indy 500 - to see the Firestone 100.  It's like the "Minor Leagues" of the Indy 500.  Bruce said the speedway alone is an amazing sight to see.  Then, the race itself was really fun to watch; it was something out of the first Cars movie, but in real life.  Here's the link:  Firestone 100- it had a really close finish, but I don't want to spoil it for you.  You really should watch it.

Toby also lost his very first tooth.  I was amazed he didn't swallow it.  I was also amazed that he let me pull it out so easily.  I was so proud of him, especially because eating, chewing and moving it around with his tongue have helped it come out so easily - all things that we are working on in getting him to increase his tolerance for solid foods.

We also planted a few flowers and a mini-garden - a few tomatoes, peppers, etc.

Last, but certainly not least, after much prayer, and light reading:

...We are going to home school in the fall.  At first we are starting with Conor, Garrett, and Caris will do some preschool activities too.  The bug bit me last fall when the boys went back to school.  I really missed them, and began to pray about it.  After around a three-four month wrestling match with God, I surrendered to His call.  The biggest reason: God is truly calling me to it.  The other reasons are to have more time with them - to teach them, disciple them, and truly know them. I feel like after they get home from school they are getting the worst of me, and I get the worst of them.  Where does Toby fit in with all of this?  Not sure just yet - kindergarten so far is two full days one week and three full days the next.  I'm praying on the other days, I will have time to do some home school things with him too, and maybe we can dive in with him the following year.  I want more time with him too, but beginning this home school journey with a 5th grader, a 3rd grader, and Toby's special needs felt too overwhelming - like diving into an ocean.  So, we are going to start off this way and then go from there.  I have more to share about this journey, and my new organizational planning for the summer to prepare us for the fall, but it will have to wait...my bed is calling my name.

God is able!

This morning in church it hit me like a ton of bricks.  I have serious doubts about whether Toby's next back surgery is going to work and not have complications as he did in the fall.  So many stopped us this morning asking how he was since his recent five day hospital stay and to tell us that they are praying over his back surgery.  One friend said something to the effect, "We're praying in faith."  I'm glad she is, because I have doubts.

Our pastor preached on Joseph, and the trials he went through.  Through it all, Joseph walked and lived as if he were 100% convinced of God's presence.    If you read about it in Genesis, you'll see that it repeats over and over that God was with him, and He caused everything in Joseph's hand to prosper.  Even when Joseph was thrown into a pit by his brothers, sold into slavery, rose to second in command, and then later thrown into prison on false charges when Potipher's wife tried to tempt him to sleeping with her.  He did the right thing and fled temptation and was still thrown into prison, but God was with Joseph.  God was fulling His plan and His purposes.  Joseph later tells his brothers as he reveals his identity to them, "...do not be distressed and do not be angry with yourselves for selling me here, because it was to save lives that God sent me ahead of you...But God sent me ahead of you to preserve for you a remnant on earth and to save your lives by a great deliverance." (Genesis 45:5&7).

At the end of the service we sang a familiar song called "God is Able" by Hillsong.
As I sang the words to the song, the Holy Spirit convicted me that I am NOT believing that God is able to keep those rods in place; I'm not asking Him in faith to make this back surgery a success.  I know as the "Mom", I have to expect the worst, but hope for the best - to prepare myself.  We have had so many things go wrong through the years. Mental preparation is okay, I believe, but it also causes me to be more cynical and in the end have less faith.  I have come to expect the worst.

A few years ago, God brought to life the verses in Ephesians 3:20, "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us."  He convicted me that I need to stop doubting, but pray in faith that He is going to do immeasurably more than all we ask or imagine in our lives.  He has - if I take the time to look back and see what He's done in our family - how far He has brought Toby.  He has done immeasurably more - His power IS at work within us.

Tears ran down my face as the words to the song convicted my heart that "God is able."
Here are some of the lyrics:

"God is Able, He will never fail...He is almighty God.
Greater than all we seek, greater than all we ask - He has done great things!
Lifted up, He defeated the grave, raised to life, our God is able.  
In his name we overcome, for the Lord, our God is able.  

God is with us, God is on our side.  He will make a way.
Far above all we know, far above all we hope, He has done great things.."
God is for us - He has open arms, He will never fail us, He will never fail us."

He defeated the grave -- that alone is enough to know that He is able.  He will be with us through it all - and He will continue to do great things through us.

In ending - I have to share this photo.  After church on Sundays, I often make brunch - today it was yummy whole-wheat pancakes.  As I was making them, I thought - Toby can eat this - he should be able to eat a pancake or at least some of it.  He's been chewing much better lately - and he LOVES syrup.  So, Toby ate several bites of pancakes - ate what everyone else was eating at the table.  He didn't gag too much, he chewed - and 6 years ago when he had a G/J feeding tube (a tube that went into his small intestine), and he was hooked up to a feeding pump 20 hours a day, I never expected or imagined I would see this day, but we did.  God is able!  He is able!

He is eating pancakes!!!

A Week of Anniversaries

Yesterday, March 19th is an important date in our family.  It marks the sixth anniversary of bringing Toby home from the hospital  - a very different little boy than what we had expected Spina Bifida to look like for us.  He came home with "extras": a trach, ventilator dependent, G/J feeding tube, nursing care.  Here is a picture history.

I treasure this photo - because he didn't have a trach yet.

His first bath; that is a size 1 diaper - He swam in it!

Conor holding Toby for the first time.  Conor also needed eye surgery just a few months later.

I love those big blue eyes!

Very sick, holding on by a breath (see his respiration rate).

Just got a trach

Beginning to grow and feel better - on a ventilator full time.

Boy, he loved his pacifier!

Home sweet home!

First day home.

Just recently, I have had some spare time to work on Toby's first-year scrapbook.  I am six years behind, but oh well!   Last week, I found a notebook that I had kept while pregnant with Toby and afterwards.  It was amazing to see the questions I had for the doctors while we were expecting this little baby with so many unknowns.   I still have copies of all the encouraging e-mails and verses people sent to us when we first learned our unborn baby would have Spina Bifida.  He's been "Redefining Spina Bifida" ever since - paving his own path, doing his own thing.  I have heard countless times "it's just a Toby thing" when something has happened we can't explain.  That notebook also has a list of all the amazing people that gave gifts, money, and time during that long 64-day stay (the 2nd time around).  That notebook also has a list of practical things we would need for our house to bring Toby home with his ventilator, trach, etc.  My dear friend Erika helped me with all of that.  Tears streamed down my face as I read all of the journal entries on caringbridge of support we've had through family, friends, and our church.  Complete strangers that sat with Toby in the hospital who now live just a few miles away and both of our sons went to preschool together.  I see God's amazing protective hand through it all - strengthening, changing us, growing our faith.

This week of March also marks one year post ETV surgery (March 17th) and the horrible convulsive seizure Toby lived through (March 24th).  I still can't look at these photos without shedding many tears.  Again, Toby's redefining Spina Bifida!

Waiting for surgery - Endoscopic Third Ventriculostomy

After ETV - in recovery

Anxiously awaiting him to wake up after seizure.

He's awake!

In Rehab - doing therapy, he was so floppy!

It's pretty amazing - this week in March marks many anniversaries of this journey - sometimes wrought with fear and sadness, other times joy.  Through it all God has been so faithful - I'm so thankful for His grace and mercy - that He answers our prayers.  It's not always in ways we would want or expect, but always for our good.

Psalm 40:1-3 "I waited patiently for the Lord; he turned to me and heard my cry.  He lifted me out of the slimy pit, out of the mud and mire; he set my feet on a rock and gave me a firm place to stand.  He put a new song in my mouth, a hymn of praise to our God.  Many will see and fear the Lord and put their trust in him."

Looking Back to Look Ahead

2012 was a really rough year for our sweet Toby.  In some ways, I was so thankful to say goodbye to 2012; and greeted 2013 with open arms.  Over the past month I've been going back and reading Toby's caringbridge site from start to finish.  The main reason has been to organize all of his medical information - I've been typing up spreadsheets by year - recording every doctor visit, test, x-ray, ER visit, diagnosis, surgery, hospital stay, therapy session, nursing visit, etc.

Am I crazy?  I just might be.

It's actually been therapeutic and helpful to organize all the information.  This way, I'll have it on hand for that next surgery or doctor's appointment.  It's also been amazing to see how far God has brought us - and Toby.

It's also difficult to look back.  After we've had a rough spell, I prefer not to stop and think about what happened or how bad it really was or could have been.  It's time to look to what's ahead - keep moving forward.  I remember seeing this saying on a runner's shirt that said, "Never look back unless you are planning to go that way."  (Henry David Thoreau, I believe).

The reality of Toby's next surgery is starting to hang like a dark cloud over my head.  We are anxiously awaiting the call from the doctor's secretary to give us a surgery date.  Over the past two months, I've blissfully been in denial and able to put it out of my mind.  Toby's back is healed, and so I have chosen not to think about what's ahead.  Just the other day Toby said, "Mom, I just wish my back was straight again."  I want it to be straight too, I'm just not ready to live through another surgery, hospital stay - I want to be on the other side of April, well into May or June looking back and seeing a "whole" Toby again.  I get weepy if I think about it too much.

He's been so independent these past few weeks.  We have been blessed with a wonderful new day nurse that is patient with Toby.  She includes him in his care - he is learning to do his own trach care, g-tube care, cathing, etc.  He's getting dressed and undressed on his own (well, when he's really motivated).  He's using his transfer board - getting in and out of bed to his wheelchair and back again.  It's been wonderful.  This surgery is going to change all of this.

Lately, I've been hearing Toby say this, "When I get bigger and don't have my wheelchair anymore, I'll be able to ________ (do such and such)."  He thinks he'll out-grow his need for his wheelchair.  He also thinks that every surgery he has will fix his body so he can walk.  Some days, I gently explain that on this side of heaven, he may never be able to walk on his own - he'll always need braces, a walker, etc. Other days - like today - I just let it go.  I don't like shattering his view of reality, life will do that to him soon enough.

Here is a picture journal of our fall.  Warning - there is a very graphic picture of what Toby's wound looked like below, so you may not want to look ahead if you have a queasy stomach or can't handle the site of blood/flesh. 

October 23rd, 2012 - Spinal cord untethering.

November 13th, 2012 - First VEPTR Insertion

Look at that boy - so straight and tall

November 28th, 2012 - Wound Vacuum Insertion (Warning - graphic photo of progression of Toby's wound from beginning through healing process)

 (Left to Right) 1.  Wound right after they removed the rod and took cultures 2. Wound with the vacuum attached.
3. Healing  4.Completely healed

December 11th, 2012 - Left VEPTR popped off rib cage, then surgery to remove all rods.  I've never seen him in that much pain.  He could barely make it every 4 hours for the next dose of narcotics.

I have no idea what this next surgery is going to hold for Toby or for us.  I know that God is God yesterday, today and tomorrow.  He already knows and is faithful.  Today, I am taking the time to look back and focus on God's faithfulness, and how He carried us through - knowing that His character does NOT change, and He will carry us through whatever lies ahead.

Answered Prayers

Note from author:  So, it's been awhile since I've posted on my blogs (there is another one).  I have yet to figure out how I want to handle both of them.  I feel like this one A Joyful Journey, needs to be more about family - sharing photos, and updates, etc.  The other one "My Life as an Oxymoron" is how God is teaching me.  I'm still figuring it out, so that's why there are two posts today in two different blogs.

I can't begin to tell all of you how much it meant these past few months to have family and friends storming the throne of grace on our behalf.  Our fall was really rough - so rough I feel like I'm still recovering from it all, then Christmas and New Year's.  It's one reason why I haven't posted a new blog entry since November 30th!  The messages from family and friends that told us they cried when they heard the news about Toby's need to go back into surgery again and again and again.

"I am crying for you, Carrie"

"I am spending time on my knees for you today."

You do not realize what it means to have others sharing in our burdens asking for ways to help - sending texts or continually asking what we need.

It's a humbling place to be in.  I'm a fairly independent person, and it's difficult to depend on others, especially without any foresight as to how we can give back when we are in such a needy place, and may be for awhile.  I don't like being needy at all.  It's a struggle to always be a "taker" when you are wired to be a "giver."

I do have to share this amazing story about how God cares about the little things.  In the middle of the fall chaos, everyone was asking us "How can I help?"  Of course my house was not as clean as I would like (I tend to be pretty picky about it, though), but it's hard to ask someone to clean it, especially when there were week long breaks in between hospital stays when life was somewhat normal.  I just didn't feel up to cleaning very much.  Of course, I can clean it myself, and I did, but I'm one of those people who LOVES to have their entire house clean.  I function better, and am able to lay that stuff aside to do fun things (read this other post to understand why I am wired so strange!)  I am okay with asking for help with meals, but it just feels strange asking for something so personal.  Not to mention, it's humbling.  I am always afraid that our life group at church will see us coming and run the other way because we are always so "needy".

So, I began to pray about the house cleaning - telling the Lord, what I just told you.  Asking Him that if this is something we really needed that He would just provide it without my having to ask.  Again, I never felt like I should ask when I can very well do it myself!  Then, a friend showed up at my door one night and said, "I hope you don't mind, but I was thinking about what I would need if we were in your situation, so I thought of this.  I know a lady that cleans several of my neighbor's homes, and she's going to stop by at this time one day to see what you need done, and then this time on Friday to clean your home.  Here is her number if these times don't work."

After she left, the tears began to fall, because God is very good.  He showed me again that He cares, even about silly things like my need for life to be neat and orderly when the rest of it is in shambles.  This friend had no idea that she would be answer to my prayer, but she was.  It has taught me to always obey God's calling at the moment He says to send a text, or an e-mail of encouragement.  To make a donation for someone's adoption, etc.  You never know when you might be answer to someone's prayers!

So, this is my thank you post to everyone who has supported us these past few months.  We are thankful for all of you!

Did He Really Mean Everything?

Over the past few weeks, I have been contemplating thankfulness.  What does it truly mean to be thankful?
I chuckle to myself, as I am often quoting Philippians 2:14 to my kids "Do everything without complaining or arguing."  No one had to teach my kids how to complain or argue.  As soon as Conor learned to speak in complete sentences he was negotiating with me, and I think he was 20 months old.  As they have gotten older, they are even more skilled at complaining and arguing.  I have been trying to teach them thankfulness with our "thankful tree", and in various other ways, but then I was convicted.

This still small voice asked me:

"Do you model this for your children?  Do you complete every task without complaining or arguing?  What about the small "grrrrs....." your children hear?"  (I'm not always particularly fond of that still small voice.)  I realized that when our kids groan when they are asked to do chores, they are copying what I model many times - expressing frustration, angst, over trivial things.

So, today I went back to read the passage in Philippians.  "Did God really mean to do everything without complaining or arguing?"  I think I would have to say "yes" - it means everything.

During our time with family in Michigan for Thanksgiving, I realized how frequently I express my angst and frustration out loud at silly little things:

traffic,
the kids' rowdiness,
drying dishes that weren't clean and getting salad dressing on the dish towel,
the wireless internet not working,

I remembered the verse and realized that I'm not a very good example to my children, and the verse does say - Do everything without complaining or arguing.  The chapter goes on to say, "so that you may become blameless and pure, children of God without fault in a crooked and depraved generation, in which you shine like stars in the universe..."

How am I shining light to others (especially my kids - because they see the real me)?  Is it through gratefulness?  I have to be honest, that personally I tend to weather the bigger trails alright, I struggle more with the the every day little things that I can control.

As I think on this even further, I realize that having an attitude of thankfulness means having an eternal perspective.  All of this stuff on earth will not last.  Laying up for ourselves treasures in heaven is what matters most.  As a saved believer in Christ, I (we) have HOPE - the ultimate HOPE of heaven.  We have salvation from our sins - we didn't have to die on that cross and suffer the ultimate penalty.  Jesus died in our place.  Even if we face death ourselves there's still hope - nothing we face, nothing is so bad that can take away that hope.

I sometimes feel that because of the many trials we have suffered with Toby, I have a right to complain - or eat more chocolate, or get a massage.  I have a right because I've suffered.  I might get someone angry for throwing this next thing out there, but when people say "Oh, no one should ever have to go through that.  No one should ever have to watch their child go through that."  Why?  What makes us so special that we deserve to never experience any type of hardship?  I honestly don't have an answer, but know that in our circumstances, if we had not gone through our times with Toby, I would not have learned to rely on God, trust Him, know Him intimately - His faithfulness, love and mercy because I would be relying on myself.

Jesus didn't deserve to die on the cross for sins he didn't commit.  He didn't deserve to leave heaven's perfection to be a man, and subject himself to being a human?  If anyone didn't have a right to experience sorrow and hardship it was Jesus.  He was led like a lamb to slaughter and yet He spoke not a word.  I have often wondered how martyrs can face death with such courage and bravery, and choose not to denounce the name of Christ or salvation.  How can they choose to die for their faith?  I think part of the secret is having an eternal perspective; this life is a vapor, and heaven is waiting for us immediately after we close our eyes in death.

Now let me throw in a bit of a disclaimer here - I don't think that the verse means that we never grieve, have sorrow, sadness, or even express constructive criticism in ways to improve various things.  It's the attitude of the heart and having an attitude of thankfulness.  I could go on and on about how we are blessed to live in America, we are so rich compared to other countries, but I won't - just to say this.  The fact is, we are blessed, our "needs" are usually not necessities.  If you have a chance, click on my sister Lynsey's blog and hear about living 3 months in Nicaragua - trust me, you'll never complain about doing laundry again!

In an effort to teach my kids not to groan, complain and mumble about having to do simple chores, I'm trying to model it in my own life.  When tempted to get bent out of shape because someone spilled sticky juice in a dripping trail across the floor, I try to change my mind-set and be thankful for having juice to begin with or clean running water for that matter, I am healthy enough to kneel on the floor to clean it up, I have children to make the messes and the list goes on and on.

I just finished reading this wonderful fiction book by Lynn Austin about three Swedish sisters that immigrate to the United States.  In the book, Sofia sings this wonderful old hymn - I will close with a few verses from the song: "Children of the Heavenly Father"

Children of the heavenly Father, safely in His bosom gather;

Nestling bird nor star in heaven, such a refuge e’eer was given.
God His own doth tend and nourish, In His holy courts they flourish

From all evil things He spares them, in His loving arms He bears them.

Neither life nor death can ever, from the Lord His children sever

Unto them His grace He showeth, and their sorrows - all He knoweth.
Though He giveth or He taketh, God His children ne’er forsaketh;
His the loving purpose solely, to preserve them pure and holy.

Wow, and that's reason enough not to complain.

My Mom - A Tribute!

I know that in writing this blog post, I'm probably going to embarrass her, but I just have to post it, and hope she'll forgive me later.  :)

Today, I need to write about my mom.  I am the oldest of three girls, and growing up I was a pretty independent, strong-willed, want my own way kind of kid.  I've always been headstrong, and when an idea gets into my head, it's pretty hard to change my mind.  (Hmmm..after typing that I realize where Caris gets it).

Between my mom and my two sisters, we have always had a close relationship.  Oh sure, we locked horns during the teenage years, I really liked to argue and be in charge.  Mom was always reminding me that she was the mother NOT me!  However, one of the biggest reasons why our relationship has withstood through the years has been just that - our parents taught us how to have open honest relationships - not perfect - but real.  They taught us how to be real with God, how to build our lives on the truth of God's word, and how to relate to each other.  My mom was always there, willing to talk, never too busy to sit in our room at night and discuss all of our triumphs, joys, and sorrows.

My mom is one of the most self-less people I know.  Through the births of all of our babies, she's been there.  Sometimes speeding through the 270 mile-trip to make it to the hospital just in time.  If mom's coming for a stay, you can count on the fact that she will cook, clean, do laundry, and clean - did I mention that my house is always clean when she leaves?  She's a gem!

After Toby was born, it was evident that we would need help more than ever.  He was in the hospital almost the first three months of his life, and my parents were there - either caring for Conor and Garrett at our house or taking them home to Michigan.  So, over the last month with both of Toby's surgeries, my mom has come again.  It was especially difficult this week because not only was Toby in the hospital, but both of my grandfathers have been in the hospital.  My Grandpa Fabian (my dad's father) had a major back surgery October 22nd, and my Grandpa MacGillivray (my mom's father) had his hip/knee replaced in two separate surgeries after the titanium rod just broke in two a few weeks ago.  Both of them have had a really rough road, and I can't imagine how hard it was for my mom to leave them to come to Ohio to help us.

I appreciate her help more than I can ever express.  Even though, we always have plenty of offers to help with the kids while Toby's in the hospital, it's hard to take up the offers when it would mean organizing dozens of people at various times, remembering who is supposed to be where and when while we stay at the hospital with Toby.  With my mom coming down, she's able to stay - keep the kids on their consistent schedule, and help maintain their normal lives - practice, homework, school lunches, etc.   One goal I've always had through this journey has been to keep things at home as peaceful as possible with the other children, so they aren't affected as much by the upheaval.  My mom allows us to do that.

She's had to give up a lot - change around her work schedule, although flexible, it means doubling up on her jobs in different weeks.  She gives up time with her husband, spending money on gas to travel, missing time with her own church activities to help us, and this time she's also been needed by my grandmothers to help them.

And this is the point where the tears begin to fall....If I could describe her, I would have to say:

Selfless, Loyal, Faithful, Servant, Loving, Kind, Full of wisdom...and the list goes.

She's an example to us and so many others of the Proverbs 31 woman: (vs. 25, 26, 28a, 30)

"Strength and dignity are her clothing, and she laughs at the time to come.  She opens her mouth with wisdom, and the teaching of kindness is on her tongue.  Her children rise up and call her blessed...Charm is deceitful, and beauty is vain, but a woman who fears the Lord is to be praised."  

I know I can call her for advice, she always listens when I need her, and sometimes just need to vent.  She also has amazing wisdom - someone that is willing to give me parenting advice in gentle ways, without being judgmental.  I appreciate her wisdom and the loving way she imparts it.

My only desire is that I can be a mother just like her, and I fall so short.

Looking back over the years, I can also see God's provision in an amazing way.  My parents were really young when they were married (really young) - facing an unexpected pregnancy they had many options, and yet they chose life, marriage, and then chose God.  I was that unexpected baby, and I'm so thankful they chose life.  They've been married 35 years, and though it hasn't been easy, they have allowed God to mold, break, cleanse, and change them - not willing to be stuck in their ways - but used by God - clay in the Potter's hands.

A few months ago it hit me that even in the middle of hard circumstances 35 years ago, God was making provision.  He knew that I would need young parents to help us during these times with Toby - to have energy to play with our kids, run them to practice, and help take care of us.  I'm so thankful that indeed "All things work together to those who love God."  He can take any circumstance and use it for His glory.

So, Saturday, Nov. 24th is my mom's birthday - and in a way to honor her, I write this post.  Thank you mom for all you've done, for all you do, and all you are.  I honestly do not know what I would do without you - and am so thankful to God that He gave me such awesome provision in your servant's heart.  I love you, and pray that God will use me in the lives of my husband, children, and others to bless them the way you have blessed us.  My prayer is that I will be able to imitate you in some small way.  Happy Birthday - I love you.