Perspective

As I sit in the PICU with Toby (he's sleeping), I figured there was no time like the present to update the blog.  If you read the blog I'm sure you probably know what's happening with Toby, but if not here's his caringbridge site
Last night I was a mess - literally felt like crawling out of my skin.  We had an excellent ER experience - it was long, but there wasn't ever a moment that something wasn't happening.  Then, we ended up in surgery and the ICU - this is not where I planned on spending my weekend.  The last time we were here for an extended stay - Toby was a baby and it lasted 30 days.  I forgot how much this place feels like the black hole - we are in one of the adjoining rooms separated by a curtain - where the screaming child next to us woke up Toby as he was trying to sleep.  It's days like this that I wonder how we made it 30 days - 12 hours and I'm ready to bolt!
It's November, though, and I'm trying to be thankful for the little things.  A friend wrote me that she was dealing with a skunk spraying her dog and then she opens up FB to find that Toby's just had major surgery - put it in to perspective for her.  (I don't think I could deal with that either - I would be struggling with skunk!!).  But, I am also learning perspective:
*Another family waited in in the surgery OR for their little boy - 3 years old - having surgery to repair blood flow to one working kidney, the other had been removed - Perspective!
*There is so much sadness here in the ICU - so many kids critical, sedated, not moving - at least my kid can talk and ask for water and food...even though it's EVERY 2 seconds - literally - that is NOT an exaggeration - Perspective!
*I am continually reminded that sometimes I don't like my life, but others would trade theirs for mine in a heartbeat (the picture of the starving African child's hand inside the American one) - Perspective!
*We live in America - a country whose doctors still embrace trachs/ventilators as ways to save kids' lives and give then normalcy - others don't - Perspective!
*My child isn't dying of cancer, going through chemo - painful as his surgery might be - Perspective!

I put my list of thankfulness on facebook today.  "In every thing give thanks for this is the will of God in Christ Jesus, concerning you."  It doesn't say that I have to give thanks for the surgery or the hardships - although some times I do. But in the middle of the situation to give thanks - to find the little things to be thankful for, and when you stop and look around there are MANY!   When I lament the fact that my son suffers so much and question why he should, God gently reminds me that His son Jesus suffered in ways I can't comprehend: a crown of thorns, beaten 39 times so that his body was beyond recognition that He was even a man - for no fault of his own.  My brain is so wired that things must be just and fair that I can't wrap my brain around that, except to believe as scripture says that it was because of God's great love for us - so we could have salvation through Him.  That's amazing love - for a God to love us that much - a person that has sinned and many times turned my back on Him - He still gave His only son for my salvation and desires to have a personal relationship with me...How's that for perspective?  I can suffer through this - as hard as it seems - "a light and momentary trouble that will be overcome when we get to heaven."  Our time on earth is just a tiny drop in the bucket compared to how long eternity will last - and we have the choice now to decide where to spend it.  If even one person comes to know Christ as a result of our testimony - it's all worth it..and that's the perspective I'm trying to have!

Unexpected Friends

Last month I entered Real Simple's Simply Stated Blogger Contest.  They wanted a 300 word blog answering the question "Who Are You Most Surprised to be Friends With?"  Well, needless to say I didn't make the top 10, but now that leaves me open to share this on my own blog.  To my friends and family that do not have children with special needs and have been there for us through all the ups and downs with Toby - this blog does NOT mean I treasure your friendship any less - I love you too!  I treasure all of you, but this was what I wrote for the blog contest!!

When I was expecting our third child, one thing I did not expect was a change in my circle of friends.  At twenty-one weeks we learned he had the most severe form of Spina Bifida and Hydrocephalus.  Several weeks later a college friend contacted me explaining that she knew another mom with a child with the same disability and thought it would be good for us to connect.  At first, I was appalled and in denial; I didn’t need this mom’s support.  I didn’t want to be grouped in with “those moms”.               

At thirty-eight weeks, our precious Toby was born and because of complications he spent several months in the hospital.  At three months old he came home with a tracheotomy tube, full-time ventilator support, a feeding tube, and private duty nursing in our home.  At this point I realized that I needed “those moms” because… I was one of them.   I joined support groups – online and locally.

                Now my circle of friends includes many mothers of children with special needs.  Whether it’s Jen in Fort Wayne, Cassie in Texas, or Erika in Columbus; they are my sisters walking with me in this journey.  A circle of friends, I did not want to join, but could not live without.  A desire of most people is to be understood, and these friends understand because they have walked in my flip-flops (as one friend so aptly put it!)  They are my cheering section celebrating Toby’s first walker and a shoulder to cry on when he’s still eating pureed food at age four.  They may have been unexpected friends, but unexpectedly their friendships are treasures of gold.

So - to all of my wonderful "friends" out there - some of you I have met in person, some of you I have not - we only talk through e-mail or the Spina Bifida FB group - sharing experiences, stories, advice, and support - this day is dedicated to you!

In Sickness and In Health

Today is Bruce and I's eleventh wedding anniversary.  It's also Bruce's birthday.  We did marry on his birthday and to answer the question everyone always asks, "No, it was not so he wouldn't forget our anniversary."  He doesn't forget things like that - truly he doesn't, it just ended up being the perfect date.  The day isn't exactly going as planned - Caris is sick with coughing and wheezing, and we took turns being up with her all night.  He did get to play golf this morning; we often have the fun discussion of how we will celebrate this fine day with "Well, it's my anniversary and well, it's my birthday!"  I had my whole morning planned to run errands - buy the perfect cards (no, I have NOT bought a birthday or an anniversary card yet - who wants to drag 4 kids into Hallmark!), get a cake, buy wrapping paper, and spend some time relaxing with the kids before our date tonight.  Instead I dragged Caris and myself out of bed at 6:45 a.m. to watch cartoons with a bucket in my lap hoping to catch her vomit (she's coughing so hard from the phlegm).

Little did I know that 11 years ago when we said our vows, "in sickness and in health" would pertain more to our kids than ourselves, at least at this point!.  Between Toby's special needs, twelve surgeries total between two of our kids, three in glasses, and recently Caris' upper respiratory issues (or asthma - they did put her on Pulmicort today), it certainly has tested our faith!  Through it all, I am thankful to God that I married my best friend and he is the only person I would want by my side through these mountains and valleys.  He keeps me sane when I'm panickingl, he has me laughing when I cry, and he's the love of my life.  I love the quote from a book in the At Home in Mitford series by Jan Karon - a character named Billy Watson is married to Rose, his schizophrenic wife, and the main character asks him why he's stuck with her all these years, he says something like, "I gave her my word, don't ya know."  We gave each other our word and that's that!

Jut a bit ago, Bruce tore apart the car seat that is filled with vomit from our ride home from Caris doctor's appointment.  We had enough time to squeeze in some present exchanging - complete with his present wrapped in a cardboard box and a brown paper sack with no card (that's the Fabian way!).  Then we cleaned out the car seat, he took a shower, and he's off again to see a movie with Conor and Garrett.  I am ready for a nap after only three hours of sleep.  At the risk of shedding a few tear over the day not turning out the way I planned, I'll relate what his anniversary card said because it sums up today perfectly:

"Real love takes more than flowers

and beautiful words

It means keeping promises,

holding on when it's difficult

and supporting each other 

And despite the passage of time and change,

your love remains

quietly in the midst of it all

forever alive and real

forever beautiful."

Happy Anniversary to my sweetheart - I love you with all my heart! 

Piggy Tails

I've done it...I've actually been able to get Caris' hair up into a ponytail.  I'm often asked if she holds still to get her hair done, and she does...somewhat.  Usually I have to put a video in or hold her down with my legs, but she's fairly cooperative.  Having a girl has been an entirely new experience for me - more screaming, more emotions, but oh so much fun.  The hair is certainly a challenge, I'm used to not even combing the boys' hair - just running out the door on the way to church or school.  I cut their hair with clippers (buzz cuts), and so Caris's hair frightens me.  I can't cut girls' bangs to save my life.  I did try to snip them the other day and the front of her hair looks like I gave her a bowl cut - (I won't post pictures of that debacle!).

I ended up cutting them entirely too short.  One of our night nurses gave me some good tips on cutting Caris's bangs.  She said to twist her hair and then snip - I did that with the rest of her hair, so it did cover up the mess I made (but just a bit).  Here's a picture of matching pony tails - mommy and Caris.
She is also learning many new words - the latest one is very clearly "Shoes" - you can hear the "sh" sound and the ending "s" sound...definitely a girl - that her first really understandable word would be shoes!  Her favorite shoes are her generic crocs, and she puts them on and asks to go "side" - which means outside.  Girls are certainly a whole 'lot of fun!

Why I Run

I really do love to run.  There's something exhilarating about having an end goal and reaching it.  It truly is in my blood - have you noticed that people either love running or you hate it?  It started when I put my first pair of shoes on in eighth-grade track!  In those days (and through high school) I ran the two-mile relay, the mile, two-miler, and get this - hurdles!!  Yup - you heard me...hurdles - these short legs ran hurdles.  (My mom held the record in the same high school for awhile on the 100-meter hurdles - and we are the same height!).  I wasn't ever very good at it, never went to states.  I would place a few times, improve my times, but I doubt I'll ever place in the top-three in my age bracket in any race - even when I'm 60 and still running (hopefully if my knees don't give out!).  This year I've decided to run the Columbus 1/2 Marathon - my training is spotty at best (with 4 kids, a child with special needs, and a busy schedule it's hard for me to find the time to consistently run every day), but I'm trying!
I have a few reasons for decided to run this race this year. One is because this will be my first 1/2 marathon. I've ran a few longer races through the years - the Crim (10 miler) in Flint, Michigan, a few 5K's, and then ten years ago was my longest race - a 30K (18.6 miles) in Hilliard - it was a race that was a part of the Columbus Marathon Training circuit.  I haven't ever run a marathon, but my goal is to do one either next year or the following.  I've always wanted to run one, but the last nine years haven't been conducive to training for a race like that.  Finally, I think our kids are at an age where I might have time to train a bit!  
The second reason I want to run this race is that I am using it as a tool to raise money for Marathons for Moms.  (Please go to the web-site and read about their purpose!)

So this year I am running with a purpose - to raise money for M4M.  It's a fund-raiser that is close to my heart especially after having Toby.  When I was pregnant with him we found out at 21-week through ultrasound that he had Spina Bifida and Hydrocephalus, and ultimately a high risk doctor even presented us with the choice to terminate my pregnancy.  For us it wasn't something we even considered, but for many out there they feel it's their only option.  Many unborn babies, especially ones with special needs are NEVER given a chance at life.  Let's be honest, society doesn't exactly treasure children, let alone children that will need many resources (education, money, therapy) for their entire lives.  So in a way I run for Toby - because of God's grace, we had the knowledge and resources to have our baby and give him the best possible life.  I run for all those babies out there that need a chance, but ultimately I run for Christ.  I heard this song this morning while I was attempting a 7-miler.  It's by Barlowe Girl and it's something I am striving to do even though I fail miserably.  See the words below.  Also if you would like to support my efforts - it's just a $1.00 per mile donation (that's $13.10) and if you are a runner and feel led - you can also join the fundraising effort by going to the link that says "Marathons for Moms".  Any person can do it - in any race they are running (or walking too!!) across the entire nation.  Here's the link to my fundraising page. Carrie's page 

"Keep Quiet"

Jesus, Jesus why's your name offensive Why are we so scared to tell this world You've saved us When all of the hope of the world's in Your name, yeah Why are we so scared to say Oh Jesus Oh Jesus If I avoid to speak Your name Tell me would You do the same to me If relevance becomes my goal Tell me will I lose You to its hold But if I keep quiet they'll never see I'm different Jesus, Jesus why's your name offensive Why are we so scared to tell this world You've saved us When all of the hope of the world's in Your name Why are we so scared to say Oh Jesus, Oh Jesus I'm sorry I cared about my name more than Yours I'm so sorry how could I hide You anymore But if I keep quiet They'll never see I'm different Jesus, Jesus why's your name so offensive Why are we so scared to tell this world You've saved us When all of the hope of the world's in Your name Why are we so scared to say Oh, Jesus Oh, Jesus Oh, Jesus

Sun, Sand, Sparklers, and Summer Fun!

Since we've had Toby, we haven't been able to go on very many family vacations.  Part of it is because traveling alone as a family with a special needs child really isn't a vacation, and some of it is the distance (can't be too long in a car or on an airplane)...other reasons are the mounds of equipment that must be taken, and his medical needs. (We did fly on a plane one year with Toby to Texas!)  Some days I feel quite sorry for ourselves, especially when I hear of all the wonderful things that other families are doing, and that's tough, BUT most days we just accept things the way they are and do the things we can.  Last year it was a short weekend to Indy to go to the Children's Museum, this year it will be "stay-cation" stuff around here.

One thing that we do almost every year is visit my parents and extended family in Michigan. Up until this year I would never (I mean never) have dared to take him to a beach: trach, water, and sand don't mix and the thought of it scared me to death.  BUT, this year we did it!  I think part of it was because I've met other families that vacation with their trach/ventilator dependent child in Hilton Head all the time, and I thought - if they can do it, we can do it.  Another plus is Toby is getting more independent, less fragile, and he can communicate his needs.  So this year we decided to brave the beach. You have to understand when I mean beach...I'm talking about the fresh waters of the Great Lakes. I grew up on these beaches - camping, swimming, running, etc. - I never knew salt water until my sophomore year of college (don't get me wrong, I love the ocean, snorkeling, etc.), but going to Lake Michigan or Lake Huron are quite fun.  I also was very excited to go with some dear friends of our family - Stephanie and Yolanda (an adopted aunt and grandmother).  We have been doing "Beach Days" with Stephanie since I was a little girl - they counted the years up and it's going on 24 years!!

This year we went to Tawas State Park - where you can walk out in the water for to your chest and still see your feet.  When we plan a day at the beach, it's an entire day.  This year we arrived at 10:00 a.m. and left around 8:00 p.m.  It was great (even though the water was cold - think 60 degrees - enough to make your goose bumps have goose bumps), and we did get in the water.  We set up our camp, and the beach had a nice boardwalk all the way out to the beach so we wheeled Toby to the end and then carried him to our camp.  Caris and Toby took naps on the beach (our wagon came in handy for that with Toby).  The kids loved playing in the sand building sand castles, and we bought an inflatable boat for Toby to get on the water, but not really in it.  If the water had been warmer I would have taken him in, but he sat in the boat playing with water in cups that I would give him while my legs froze!  (not sure why this text turned black instead of white - still trying to figure out this blogging thing!)

Our visit to Grandma's also included some swimming at the cousins' pool, campfires, s'mores, sparklers, playing in the pond, and fireworks!!  We have had a lot of fun together, and I'm so glad we ventured to the beach with Toby - we will definitely do it again next summer.

A Stranger in My House

There are strangers in our house - almost 17 hours a day, 7 days a week.  You know that phrase "you can't live with 'em, you can't live without 'em"...well, it describes them perfectly.  I wish we could "live" without them, but at this point, I can't.  Don't get my wrong, most days I enjoy these strangers - they allow me the freedom to get things done without having to be a full-time mom and a full-time nurse to Toby...but some weeks are hard.  This week has been hard, so I had to make a list of grieving - grieving over for life not being normal.

Here are a few grievances this week:
1.  One nurse pointing out the white spots in my painting job - claiming in her note that she "knows I was looking for them" (I was not.)
2.  Little privacy
3.  Someone watching and critiquing almost every parenting decision I make or...don't make
4.  Related to 3 - but someone watching me lose my temper when all three boys are fighting (which happens to be frequent as of late - is it time for school to start again yet?), or Caris is whining and screaming (oh how I forgot what it was like to have a "normal" toddler) for two hours straight.
5.  Watching me lose my patience in the library today while Caris screams, Toby is purposely getting in the way of us trying to check out and just sitting over on that bench watching us...
6.  The conflicts they have with Toby - not giving him enough independence 
7.  Knowing when to step in and ask her to please do his care the way we do it so there won't be any conflicts
8.  Almost answering my front door when clearly I can reach it...
9.  Feeling helpless to change the situation
10.  Frustration because I don't have the energy or presence of mind to take care of all 4 kids by myself 24/7 and sometimes she is Toby's "stand-in" for myself...
11.  Not being able to cry and throw a tantrum because she's here..in the house...and at 4:30 p.m. when she leaves the urge to cry will be gone.


Okay - that sounds really negative, but this is the reality of our life.  Most weeks they are wonderful blessings, but some weeks they are frustrating annoyances.  I feel like a chicken penned in by the restrictions of their charting, med sheets...please can't I just raise my child the way I want to - can't we cath him in his wheelchair without worrying about your back issues?  It may well be time for a change - not sure what kind of change, but a change none-the-less.  I know that already my mind is working on and praying through a plan of care system to help Toby become more independent.  He is getting older and doesn't need to lay down in his bed for every medication given, trach care, and straight cathing.  It's time - praying that I have the courage and discipline to plan this system and implement it after our break away from all nursing care next week (much needed -  I know that God has orchestrated the timing of that).

I am going through a time of grieving again - grieving for what could have been, and for what has been lost - our life of "not normal"...I know God is there in the grief...and as my friend Jen reminded me through this scripture:
 
2 Corinthians 4:16-18 "Therefore we do not lose heart.  Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us and eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Thank the Lord that this is temporal, and the hope of heaven is on the other side....trying to remember that these trsome days this "normal" seems too much to bear.  It oubles are momentary - just a moment in the light of eternity.  Trying to remember that others are dealing with far worse situations than myself, I can't complain...but it can be so difficult. 

Mommy Tantrums!

(Bear with me - it is a bit long!)
I bet the title may have caught your attention, and yes I'm ashamed to admit it, but I had a bit of a mommy tantrum last week.  Let me back up a bit and give you a run down of the events leading up to my tantrum!
May 23rd - Toby is admitted to the hospital
May 24th - Garrett has a field trip - I miss it because alas Toby's in the hospital
May 25th - Toby goes under anesthesia for an extensive MRI
May 26th - Toby's discharged to his ENT appt. and we make plans for his 10th surgery
May 27th - Paint the kitchen - two coats; take Conor and Garrett to stay with Lynsey (my sister) for weekend!
May 28th - Paint specific living room walls, take Toby and Caris to park
May 29th - clean house, prep food for company, touch up paint!
May 30th - Cook-out with friends; their son falls on our slip-n-slide and breaks finger (is having surgery on his finger this week)
May 31st - Last week of school begins with end of the year picnics, parties, and chaos

By Friday, June 3rd - I'm exhausted and begin to have the "crash" that seems to happen after Toby's been in the hospital.  My sister and her fiance came into town the night before to help me divide and conquer for the last day of school activities.  They went with Conor and Garrett to the school pool party, and I went with Toby to his ice cream party intending on making it for at least some of C & G's event, but not really making it - I ended up there at the end..and we went home.  SO, here's the tantrum you've been waiting to hear about.  I left the pool party with the three kids to go home (Toby's at home napping with nurse) and decide to get ice cream to celebrate the last day of school. 

On my way, I need to stop at the library to return some overdue books and to fess up that Caris had ripped two of them.  (Keep in mind - I am headed home to pack the car to leave with Caris, Lynsey (my sis), and Anthony (my future BIL) to go to Michigan for the weekend for Lynsey's bridal shower on Sunday).  One book wasn't that bad - could have easily been taped and the other was a board book - should have been more durable, but I guess in the hands of a 16-month old - not so much!  Well, they inform me that I have to pay full price for both books, but that I get to keep them.  It was the straw that broke the camel's back and I had a meltdown - complete and utter 2-year old meltdown. I didn't rant or rave, just contested the hefty fine with a supervisor, and broke down into tears, explaining that it's been a rough few weeks, and this was the last thing I expected...(even though I know that they do NOT understand in the least).  Finally, I quietly paid the fine and left (and vowed to NOT return to that library for I'm sure that an alarm will sound next time announcing that the crazy lady has returned!)  Thankfully the three kids were in the car, but immediately saw me crying my eyes out and wanted to know what was wrong!

Later, I questioned why in the world I was having such a hard time these past few weeks and after much contemplation, I learned a few things about myself.  First, when Toby has an unplanned hospital stay - during the actual stay I do great because I'm running on adrenaline...which seemed to have lasted through the weekend and into the next week (hence house painted!), but later, I crash!  In the moment, I don't have the time to "feel, grieve or mourn" the fact that we aren't normal - our family isn't normal...we are raising a medically fragile special needs child.  In the moment, I have to be strong for him (so he doesn't fall apart while they stick him 4 times for an IV) and the family so we don't fall apart.  I'm still trying to keep things normal for the kids at home, while making major decisions that affect Toby's health, while being vigilant that he's getting the best care he deserves.  It's tough. 

The other thing I realized is that this has happened before - after Toby's March hospital stay, and I need to plan on it happening again.  I think it's okay to gear up, be strong, but I need to realize that afterwards when the adrenaline rush is over - the grieving will come.  Every hospital stay is a reality check that the "normal" life we have made exists, but not always...life isn't normal for us.  Sometimes it's very isolating...we have lost friends - new people are more reluctant to be our friends (at least some)...I'm not sure if it's fear of "it" happening to them or that we might be needier than most friends (which is true at times).  I also remembered that it's okay to grieve and not appear all put together which I sometimes do because it's the one thing I can control.  And in the end...even though it all may fall part or others may fail me - God will NOT.  He is trustworthy once again and I can trust HIM through it all.  The song below has been very comforting to me over these last few weeks - I in no way compare the grief I experience to the grief of losing a loved one to death, but I can certainly relate with many of the thoughts/emotions expressed by this song.

"I Will Trust You" by Stephen Curtis Chapman
I don’t even want to breathe now
All I want to do is close my eyes
I don’t want to open them again
Till I’m standing on the other side

I don’t even want to be right now
I don’t want to think another thought
I don’t want to feel this pain I feel
Right now pain is all I’ve got
It feels like its all I’ve got
But I know that its not
Oh I know you’re all I’ve got

And I will trust you, I’ll trust you
Trust you God, I will
Even when I don’t understand
Even then I will say again
You are my God
And I will trust You

God I’m longing for the day to come
When this cloudy glass I’m looking through
Is shattered in a million pieces
And finally I can just see You
God you know I believe its true
I know I will see you
But until the day I do

And I will trust you, I’ll trust you
Trust you God, I will
Even when I don’t understand
Even then I will say again
You are my God
And I will trust You

And with every breath I take
And for every day that breaks
I will trust you
I will trust you
and when nothing is making sense
Even then I will say again
God I trust You
I will trust You

I know your heart is good
I know your love is strong
I know your plans for me
Are much better than my own

So I will trust you, I’ll trust you
I trust you God, I will
Even when I can’t see the end

And I will trust you, I will trust you. I will
Even when I don’t understand
Even then I will say again
I will trust you, I will trust you. I will

I know your heart is good
your love is strong
your plans for me
Are better than my own
yeah your heart is good
your love is strong
your plans for me
Are better than my own

And I will trust you
You are my God
I will trust you

Our Crazy Week

So, it's been a really crazy week.  Last Monday, Toby began acting strangely and I was convinced he was in shunt failure; he had all the typical signs - lethargy, crying, complaining of headache, loss of appetite (nausea), and he was more out of it than I'd ever seen, so we called 911 and headed to the hospital.  I wasn't comfortable driving him there myself, he was limp, pale, and let's just say it takes quite a bit to rattle me now, and I was rattled.  It wasn't his shunt, or at least we're not sure - upper respiratory infection and an ear infection seemed to be the diagnosis.  It seems kind of silly to call the squad for an ear infection, but I've never seen him that listless with just "normal" childhood illnesses.  A very dear friend called me while Toby was in the hospital and reminded me that it's possible it was the shunt, but God healed him in the middle of it - that is very possible.  I know that sometimes I forget the power of prayer.

From top left to bottom right (like you're reading a book) is what Toby looked like on Monday at 4:00 p.m., that night in the ER, during music therapy on Thursday, and at the park on Saturday.  Quite a transformation for sure.  He did have some moments of perkiness in the hospital.  We had a great PCA a few days that washed Toby's hair with these caps that have the soap and everything all in one - and they are kept warm too.  After the washing, there's no rinsing so it's a perfect way to wash hair in the hospital (I wish we had some for home - especially on those days when I really need to get out of the house quickly).

So, Toby was discharged on Thursday to find out at an ENT appt. that he has a double ear infection; after one dose of antibiotics he perked up, but I will say that he runs out of energy quickly - I noticed that even today.  Between Lon Nell (Bruce's mom) and my mom they were able to keep life flowing at home with the kids.  On Thursday night my mom asked if I wanted to start painting the kitchen.  We've had the paint for almost two months, but I just haven't had the time to do it (go figure).  Conor and Garrett were previously scheduled to spend the weekend with Aunt Lynsey, so I thought "why not, might as well end a crazy week with a crazy weekend?"  So, we did - we painted the kitchen, and I was so inspired that I went ahead on Saturday and did the red painting we had planned on in the living room (including an 18 foot wall or so).  This is the before pictures:

And after:

We did manage a walk and a trip to the park with Caris and Toby.  I wanted to go to the pool, but Toby didn't really need to be over-taxed  by the heat, so we stayed inside, and managed to host company today on Memorial Day.  Our fun was cut short, though, by a trip to the urgent care - our friends' son was going down the slip-n-slide and broke his finger.  All in all, I guess you have to laugh at the comedy of errors of the week....and through it all I keep hearing this chorus in my head by Stephen Curtis Chapman (his Beauty Will Rise CD is my latest fix for music and much encouragement):

"And I will trust You, I'll trust You; trust You God, I will.  Even when I don't understand, even then I will say again.  You are my God, and I will trust You." 

Hoping this next week is filled with much trust in God, and is a little less uneventful!!

Seizing the Moment

So, Conor had to have oral surgery yesterday.  He had two extra teeth in his mouth that he didn't need.  We found this out after having a consultation/x-ray with the orthodontist a few months ago.  I had to laugh when I called Bruce and said "You won't believe what we just found out!"  He knew exactly - remembering that he also had an extra tooth around that age that needed to surgically removed.  I know oral surgery really isn't a big deal, but it will be his 2nd surgery in 7 (almost 8) years; it's not really anything compared to others or his younger brother Toby (9 surgeries in 4 yeas), but when you expect your healthy kids to be, well...healthy - it's unexpected!!  He had eye surgery when he was 3-years old, his eyes crossed and the glasses weren't really working, so they had to move his inner eye muscles.  It was a really crazy time in our lives - Conor was 3 1/2, Garrett had just turned 2, and Toby was about 8 weeks old and in-patient at Children's (having just gotten his trach, gj-feeding tube, and needing ventilation full time).  I laugh at the irony - we had one child in-patient and one child out-patient at the same time - sort of nuts.  SOOOO...all that to say I didn't take any pictures of  Conor's first surgery.  I think I was just too overwhelmed. I  remember when he came out of surgery - his eyes were bloody.  They weren't just blood-shot - they were bloody and he refused to open his eyes for almost 6 hours.  I finally got him to open his eyes bribing him with a PB&J sandwich.
Surgery this time was much easier, and I resolved to take lots of pictures.  I take pictures of all of Toby's hospital stays, tests, and surgeries, we might as well document this event too.  So, here are some photos of Conor's mouth!! (warning - a little gross).

When I went back to see him afterwards, he was still a bit loopy from being under and had the nurse cracking up with his large vocabulary!!  He was making me laugh too because he wanted to sit up even though he was very unsteady.  Only one dose of pain meds yesterday, and doing so well he went back to school today.  I was surprised by that.  I'm really glad I took the photos - he's growing up way too fast!

Organizing

Can I just tell you that I have fallen in love with the Container Store these last few weeks?  A friend of mine got me started (so Bruce can blame Beth!) telling me about some items they had and a spring sale!!  In the last two weeks, I've been there twice purchasing containers to organize our stuff.  It has been loads of fun, reorganizing bedroom drawers, bathroom drawers, closets, and the pantry.
Here's a sample:

We've also been working on reorganizing the boys' (Conor and Garrett) bedroom, and choosing paint colors and window treatments for our kitchen and great room.  I guess we're finally settling in the new house and making it a home.
I will need to be careful, though...and see if I can:

No Guarantees

Today, I got the phone call that I've been dreading.  I knew it was coming, just had a feeling, especially after the first phone call a few weeks ago from our home health agency (excerpt)

HHA: We have a few questions for you from your insurance company.
Me: Okay
HHA: Does the child go to school?
Me: Do I have to answer that?
HHA: Well....(long pause...I don't think he knew how to answer)
Me: 2 1/2 hours a day 3 days a week
HHA:  Does the private duty nurse attend school with him?
Me: Yes (in my mind, I'm thinking, "uh-oh" here we go, we're going to lose our nursing hours)..and the conversation went on a few more minutes. 

So, today I got the call from the home health agency that our insurance is inquiring into our nursing hours, and wants copies of all the nursing notes.  The doctor at insurance wants to know about Toby's apnea.  How long do his episodes last?  What is his oxygen during the apnea?  Both of those are actually really stupid questions - if the doctor had any clue, he wouldn't ask those questions.  Toby's on a ventilator for his apnea, so when he's sleeping, the apnea doesn't occur - and his oxygen doesn't drop...because the ventilator is breathing for him 12 bpm. 
Anyway, they are starting to question whether they should be covering our hours, especially when Toby goes to school.  Right now our private duty nurse goes to school with Toby because he has skilled nursing needs, i.e. a trach, suctioning, and a ventilator.  If the trach falls out and somone isn't there, he could die. I'm wondering if they are questioning the nurse going to school with him because it's supposed to be "HOMECARE" (I guess that means Toby never leaves home, even for doctor's appointments). We currently have approval through the end of April. 
For the last 4 years, our insurance has been covering most of Toby's nursing hours (not all); the rest are covered by the Ohio Home Care Waiver (Medicaid Waivers).  I should clarify that if insurance stops paying waiver should pick up those hours (hopefully), so I'm not fearful of that, but this is what I am fearful of:
In the past two years, they passed new regulations.  When a child on the waiver goes to school,  the school has to cover the hours (because the school is allowed to bill Medicaid, and it's considered double dipping).  Sorry, if it is confusing (I don't understand it all either).  So our nurse, the one we know and that is trained for Toby might not be able to school with him.
Bottom line - I'm not letting my child with a trach get on a bus by himself - with no nurse.  Sorry, I'm not sending him to school when a nurse isn't close by if something happens.  Most school nurses have no idea how to suction or put a trach back in, and usually rotate between buildings, so this could be very dangerous for Toby.
I know that it sounds like I'm looking at the glass half-empty; I'm assuming that insurance stops paying, that waiver says we can't send our nurse to school with Toby, but all of the above could happen, and I just don't like the fact that we are headed down that road - that insurance is questioning...it's what I've been dreading.

After the phone call with the HHA, I began making dinner and had this conversation with the Lord.

Me: Lord, what are we going to do?  
God: Trust me...
Me: But we might not know until April if we lose these nursing hours and if things will change, how can I stand the next two months with things so unsettled?
God: Trust me
Me:  I don't like it when things are so unsettled, when there are no guarantees.
God:  There aren't any guarantees, Carrie - but I ask you to trust me
Me:  No guarantees?  But, I'm NOT comfortable with no guarantees; I need things perfectly planned out.
God: I didn't call you to a life of comfort and things under your control - I called you to trust and walk by faith, to let me be in control...Will you trust me?
Me: Yes, I'll trust you
God: By the way, there are some guarantees...
Me: There are?
God: Yes, did you forget?  My love is guaranteed; Heaven is guaranteed; I have a perfect plan, I work everything together for good to them who love God; I love Toby more than you love him; I have your best interest in mind; My promises are guaranteed; I am faithful, I will be here for you - even if you feel like the bottom is falling out, or when things change(I know how well you do with change...) Will you trust me?
Me:  Yes, I will...I'm going to try to daily put this at your feet and wait (which I'm not very good at)..trusting...you'll help me, Lord, won't you?
God: Yes, because I guarantee I love you and I guarantee I'm always trustworthy.

So, pray - pray that God will work something out; the doctors will see that we still need these nursing hours, but more than that - that I will continue to trust in the middle of uncertain circumstances.

God's Comfort

First of all, thank you for your comforting words and prayers over us last week.  After a few days of thinking, praying, and talking to a friend, I realized that some of my grief came from comparing Toby to other kids with Spina Bifida.  Wondering why on top of having Spina Bifida, Toby got the extra stuff - like a trach, ventilator, and g-tube.  This is going to sound silly, but sometimes, I wish Toby had "normal" Spina Bifida like other kids...without the extra medical/health issues.  BUT, I also know that God has used this in special ways - my friend Erika and I have been able to really walk in each other's shoes (and if you don't know that amazing God story, I'll have to tell you it sometime).  We have an incredible support group of medically fragile kids, and I have been blessed to have wonderful mom friends not only in the Spina Bifida world, but also in the world of respiratory stuff...and it truly has been a blessing.

So on to what I really wanted to blog about.  God's comfort.  I am always amazed at God's perfect timing.  This week I finally got off the waiting list to join BSF (Bible Study Fellowship) in studying the book of Isaiah..and since I'm coming in to the study toward the end, I got to skip chapters 1-39 (talking about judgment), and came in to the second half of the book - talking about God's comfort. (yay!)  I felt like an emotional wreck on Thursday, just tearing up as others in my group were speaking about God's comfort.  One lady (also handed me a tissue) said she looked up a definition of comfort and it said that it does not necessarily speak of difficulties being removed in our lives, but having the strength (from God) to bear them. 

God's comfort is very special to me because we have experienced it in a very personal way.  He has given us the strength to walk through some rough stuff.  I vividly remember looking at my 6 lb. baby boy in the Pediatric Intensive Care Unit - hooked up to a CPAP machine, PICC line, and heart monitors - watching his respirations go down to 8 (barely breathing on his own)...and knowing that God was there, holding me in my darkest of hours.  Here is a verse from Isaiah 40:11 "He tends his flock like a shepherd; He gathers the lambs in his arms and carries them close to his heart; he gently leads those that have young."  I know that personal touch of His arms carrying me through the grieving moments, the tough reality checks, the realization that surgeries are "normal" for us.  I have learned that God can take it - He wants to hear from me about all my emotions, fears, rantings, and ravings, but in the end trust Him for everything - and accept His love, care, grace, and mercy to live this special needs life relying only on HIM!

One of the points that the study made this week was, are you sharing God's comfort with others? I hope that I am. I pray that as God has brought me up out of the pit and clay, and set my feet on a rock, given me a new song, that "Many will see and will trust in the LORD." (Psalm 40:1-3).  It's only because of Christ in me - knowing Him as my personal Savior, that we have the comfort from God - by His grace, we have strength to bear each day, have peace in the middle of storms, and not just to endure in the journey, but have true joy in it!

Tonight, I was reminded of God's comfort once again - He has answered my prayers. Toby can talk, he can even sing. (see video). Just two years ago, he could barely make a noise. I remember watching the silent cries of my newborn - seeing it, but not hearing it..and praying so hard that he would learn to talk...and here we are. One of Toby's favorite things to do as of late is to sing while Grandpa (or myself) play the piano.  I wanted to share this blessing with you:

Yes, Jesus Loves Me..Yes Jesus Loves Me..Yes Jesus Loves Me - The Bible Tells Me So!

This Disability Has Me Down

It's been a rough week - I really wanted to entitle this entry as "Spina Bifida is Kicking my Butt"...but if the kids read this, they will reprimand me for using "potty words"!! :) Monday, it started with a problem that I noticed while looking through our EOB's (Explanation of Benefits) on our insurance web-site. If you really want to put yourself in a foul mood - look through your insurance claims! I am a fix-it type, don't like to have any loose ends, and so I spent two days trying to figure out why Medicaid is billing our Insurance for services they should be covering. It was enough to make me go insane, have stressed filled shoulders, and in the end, it's not really resolved, but I do understand a bit better what is going on. I will say that contrary to what most have experienced in the past, I spoke with a nice lady at Medicaid - she treated me like a human being, and explained things the best she could. I will also say that those reps can't even look at Medicaid billing statements, though, it's like Fort Knox. They told me that there's only one person in the office that can see who Medicaid has billed and how much they have paid out. His name is "Tommy". The situation is complicated, and we have decided to let sleeping dogs lie, especially since I think that all is right, but it was enough to make me nuts.


Then, Toby has just been challenging of late. He doesn't want to obey the nurses, and fights them on everything - from brushing his teeth, to when they do trach care, to whatever care they have to give him. I don't know how to handle this. I feel like the "husband" constantly having to back up the nurse and tell Toby to obey, cooperate, and do what she says. We've tried time-outs, spanking, privileges lossed, etc. (and while I'm on the subject - how do you spank a child who's butt is numb and can't feel it!)...Discipline is tough with Toby; I'm praying hard for wisdom to know how to get a hold of his heart, to mold and shape it to want to obey those in authority over him. I feel at a loss to know how - the methods we used with the other kids don't work...so we start at the drawing board once again.

This morning was the icing on the cake. Every morning (just about) Toby eats a pureed breakfast with waffles, bananas, vanilla yogurt, and milk. Most mornings we have to hound him to eat it, and this morning was no different. I don't know what I'm doing wrong - it's pureed, it's not lumpy, doesn't have chunks, why won't he eat it? The OT encourages me that it's a LONG road to getting Toby to eat/chew solid foods (don't we know that already), and that he's already made significant progress, be patient. I'm wondering if we should just give up, go back to all tube feeds, and be done. I tried discipline this morning to get Toby to eat, I tried ignoring him. Maybe if he didn't see/know how important it is to me (so we don't have to bolus formula through his tube) he would eat. Neither worked..I had to leave it to the nurse to deal with so I could get Conor and Garrett to school.

The icing on the cake was the pharmacist gently reminding me that his liquid solution of omeprazole is a compound, and CVS' policy is that it takes 24 hours for a compound to be made up. She wasn't overly nasty to me, but in that broken down place I was already in, it sent me over the edge and I cried all the way home...it's one of those weeks - special needs' sucks sometimes.

I don't want to leave you with a downer, so I want to share about some encouragement that has been picking me up. Toby received the new Newsboys CD for Christmas "Born Again", and several have been encouraging. Here are a few lines from some of the songs: (titles of song underlined)

Build us Back - "We've been crumbled we've been crushed, the city walls have turned to dust. Broken hands and blistered feet, we walk for miles to find relief. When the thief takes, when our hopes cave, you build us back, you build us back. Though the moutains be shaken, the hills be removed, your unfailing love remains. After all that's been taken, your promise still sacred, you build us back with precious stones."


Running to You- "When everything is broken, there's a door wide open, you'll find me running through, more than just emotion, my broken heart has chosen. Jesus, I'm running to you"


Our Your Knees - "When your heart breaks He'll hurt for you, dreams are out of reach, He'll pull you through. When you lose hope all you gotta do is get on your knees again. Not long now and you're gonna see, no mountain's too high for your or for me, or fall too far if you can believe, and get on your knees again....When you think about giving up, get on your knees"

These last few days, I've been stuck in a valley.  It's been another time of grieving, grieving dreams lost, grieving for a life that was supposed to be normal and predictable - with a child that could eat normal, talk, walk, run, and play - living in a world not made for a kid in a wheelchair...but God is there - He beckons me to my knees to lay it at His feet once again and experience the miracle of His mercy and grace.

Our Complete Family

Toby just loves Caris.  He is a proud big brother and always wants to hold her, which he rarely gets to do because she's always on the move crawling everywhere!  On a rare moment on Christmas day while visiting my parents, I was able to snap these photos: 

When Bruce and I were planning our family, we had always talked about having three or four kids.  After we had Toby, he was definitely done with three. I never quite had a peace about it.  As morbid or as cynical as it may sound (in my "planning" mode), I was concerned that if we ever quit with three and something happened to Toby, we would only have two children left (and obviously I know there is no guarantee with our other kids too).  It may sound silly to think such a thing, but for us, I felt in our old and gray years, we would wish we had more.
Anyway, all that to say that God had a new and better plan.  Caris was not a planned pregnancy, but she has been the biggest blessing.  When I was pregnant with her, I was truly fearful of how Toby would react to her.  Whenever any little baby, crawler or toddler would come near him, he would scream and cry...NOT quite the reaction we wanted him to have with his new brother or sister.  We did not find out the gender of the baby, because even though Bruce and I are mega-planners, we like the surprise.  I truly had a feeling about this one, my pregnancy had just a few differences - not HUGE differences, but little subtle things that didn't happen with any of the other pregnancies.
When Caris was born, he just loved her - and has always loved her.  I think God knew that he needed to be a "big brother" and I know that as Caris gets older, she will "mother" Toby too.  Caris has been a HUGE blessing to our family.  She is the happiest baby ever, easy going, but also silly - with a fun sense of humor.  I have truly enjoyed all the little things about having a normal, healthy newborn, infant, and now crawler.  Simple things like zip up jammies, hearing her talk, watching her cruise across the floor - things I didn't appreciate as much as I should have with Conor and Garret, and didn't experience with Toby.  God has given me a second chance to really truly enjoy every stage.  And the day Toby met Caris, he was in love at first sight.  I am so glad that God's plans are not my own, and that He chose to bless us with baby Caris (who is one next Friday!!), the perfect completion to our family.

New Year's Rededication - Humility

Humility!
I hesitate to even blog about this because it means I'm really putting myself out there, sharing struggles...then again even thinking that someone would care enough to read I am writing sticks a knife in the heart of what I will write about - Think about it.  Why is blogging and social networks so important?  Because we feel important putting our thoughts out there knowing someone will read them - knowing someone will "like" them or comment on them.  At the root is it pride - wanting someone to read and comment, someone to care? O f course it's not all prideful, we are sharing - sharing our lives with friends and family, but these thoughts have caused me to pause before I just go venting about the latest problem of my day on facebook! :)

Humility - it is something that one of our pastors preached about a few weeks ago, and boy did it hit home.  I felt like he was speaking directly to ME.  He spoke about the Power of Humility..he said, "Humility is possessing such a complete spiritual awareness and comprehension that God is ALL, that I am brought to absolute and total nothingness before Him, and thus, the complete abandonment of self and self-will."  How do we get humility?  Not by striving, trying harder or having self-discipline...it's not something we can just work at - it's being alone with God every day, to know Him, so He can create humility in us.  Before we do anything or go anywhere, we go to the cross to get rid of our pride, and go to the throne for the power of Christ. When we possess humility, it is the key to possessing God's grace, posessing His mind, and possessing His hand. (by the way if you would like to hear an audio of the message, click here.  There are actually three messages in the series, the one that I'm speaking of is titled "The Power of Humility")


The part that really hit home is that our time with God needs to be more important than sleep, more important than whatever we stayed up late the night before doing (ahem, blogging or facebook!!)  that causes us to sleep in and not be able to go to the cross and the throne...I know that pride and selfishness is innate in the human heart, it's the root of most of the sin and evil in the world - think about it any type of crime you can think of, the root is pride and selfishness. 

So, my New Year's Rededication is to go to the throne and to go to the cross.  I know that I have wandered far too long.  I want purpose in the activities of every day - purpose in what I am teaching my kids, purpose in my relationship with my husband, not just flying by the seat of my pants, wasting precious time.  I was reminded this Christmas season through some very tragic deaths that life is short, life is too precious to waste, and people need Jesus - they need to see Christ in me.  The only way that I can do that is to be humble enough to give up "My agenda" "My plans" to see what God has for me today.  "Who does He want me to serve, want me to share Christ with?"  The task seems daunting at times, but I know that it's the only way; my strongest desire is to be used, to be purposeful, no regrets - all for the glory of God.

I have been reading "My Utmost for His Highest" by Oswald Chambers...and here is January 5th's post:  He was talking about the life of Peter and how the first time Jesus asked Peter to "Follow Me" it was easy in a way, he followed easily out of the fascination with Jesus.  Then he came to the place where he denied Christ and his heart broke.  Then, he received the Holy Spirit, and Jesus says again, "Follow Me"..."this time it was a following in internal martyrydom."  And this is the part I really needed to hear:

"Between these times Peter had denied Jesus with oaths and curses, he had come to the end of himself and all his self-sufficiency, there was not one strand of himself he would ever rely upon again, and in his destitution he was in a fit condition to receive an impartation from the risen Lord...No matter what changes God has wrought in you, never rely upon them, build only on a Person, the Lord Jesus Chrsit, and on the Spirit He gives."
I pray that I have come to the end of myself, that I'm not relying on the previous changes Christ has done in me, and I'm ready to humble myself before Him to change Me and make me useful for His kingdom...that is my New Year's Rededication.