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.