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