For the Love of Ivey

22 and 3/4th years. Every word, and more. We were told in the first 2 weeks after Ivey was born, in the midst of the chaos of her and having two toddler boys at home - that our marriage would likely end in divorce. Most special needs marriages do. Special needs marriages are a section of divorce happening at a higher rate than most- yet, overlooked by most. Still, someone felt compelled that we know that information during such a life altering time. It was an added layer we struggled to process, along with many other devastating blows. It scared us beyond belief. We were clinging to one another. Over the years, we have pushed the limits, the barriers. We have slept in the same bed, for weeks separated by miles and hospital walls, with nurses in the next room in the sacred walls of our home, and now, with our daughter tucked away in her own bed in our room. We have hung onto thin air at times. And, we have held on to each other. We were told in counseling, in our darkest days,...

Top Sail, North Carolina (Camp Lejeune) with Taylor and Craig.   Frightening amount of huge shark teeth on that beach. St. Simons with the Griffeths'.   This is a handy-dandy gift from Santa.  She fits weight wise but she is so long.  But, good workout for the daddy.  I apologized to her in advance for the crazy hair.  I put sunscreen everywhere, so those curls get a little messy.  Snuggling with the brother.  (She is almost as long as he is.)  Standing in the stander with her new back brace.  Loves it!  Birthday party for our Ava. (Ava is the one in the construction gear.  All girl, but note she is the only girl besides Ivey, so she's just one of the guys. )  Again, St. Simons with the Griffeths'.  Godparents are the bestests!  (I know that's grammatically incorrect.)  Griffeths' amazing dog.  Would not leave her side the entire time.  And lots and lots and...

It is amazing the things we take for granted.  For me, and Matt, sleep was something we took for granted right up until the moment our sweet girl jumped into our lives. So it has been 7 1/2 years since we officially slept, real sleep. When you do without for a couple of nights, normally, you know you need it.  You get grumpy.  Complain.  Make sure you get to bed early at the first chance you get.  All better. This has been our first chance in years......years. It's amazing that the world really has started spinning slower.  Really.  time is s.l.o.w.i.n.g down. We smile more..... at each other. Our house is ours again.  We go to bed.  When we want to. We wake up...after 6:00 am. We miss our nurses.  Tremendously.  But we love our home. We were married just shy of five years before the sleep deprivation, only if you consider the two boys born before Ivey, then technically we were sleep deprived long before Ivey.  ...

Today we have been married 12 years. After 7 years we start into the next year, officially tonight, with no night nursing. None. We will have a nurse come 2 days a week for the next few months until Ivey comes up for review again.  But as for the nights, for the first time in 7, let me say that again, 7 years, we are on our on. Oh my.  How do married couples act without a nightly chaperone??  And, we have our girl to ourselves.  Are we ready?

I read a lot about children with special needs.  A LOT.  I read what I can find on mommas with children with special needs.  I re-read the same articles on marriages (surviving) with a child with special needs.  And of course, I read about the siblings.  But now, officially seven years into this, I am merely re-reading the same words over and over.  It is all the skimming the surface.  All recapping "it's stressful".  The stress of the day directs me to which topic I will Google for the day.  As for books, they all skip the surface too or they are the stories that tell of the hardships of the child. I am tired of going to workshops on special needs.  It is always the same old same old.  I have read the books that are sad (or mad) from parents living with a SN child.  I'm past that. I want to read something real.  Cut the crap.   (This has been brewing for a while.  I want to talk to someone who wi...

A day or a week, it doesn't matter, it goes way up and way down within moments.  And sometimes I really have to ask, is this normal?  Does everyone taste the bitterness amongst the sweet like this?  For the record, this has been Ivey's best summer.  In her Life.  Which also means it has been mine.  One of MY happiest.  Slow, steady...FUN...friends, beach, pool, spend-the-nights, swimming, play-dates, trips alone, trips with great friends.  Time Home.  Our Family.  Together.  No emergency rooms.  No hospital over-nighters. The world started spinning slower this summer. Another change this summer was our nursing hours.  Two nights a week we are on our own.  No nurses.  For the first time in six years...  At first we were scared and intimidated of nights alone with Ivey.  We sat watching the clock not knowing what to do with ourselves.  It is a very weird feeling.  Someone so small can...

That's the best I can think of ..... surviving has side effects .  If we sat down and evaluated the days, nights, weeks, months and now years, we most definitely have survived.  It makes me feel like running around like Gloria Gaynor singing "I Will Survive".  (On occasion - I have.)  And I surmise that looking in from the outside, we've done a fictitiously superb job ... of surviving.  But that's where things get a little gray and sketchy.  We have survived, which dang sure impresses most people. If fact even I am impressed.  I look back on some days and wonder how in the world did we ever get through that.....yet here we are as proof.  We survived. We, when in the company of our sweet girl, can appear somewhat intimidating.  Seriously, how many moms do you know who can monitor a seizure, vent a g-tube, administer Diastat, manipulate a feeding pump, call a neurologists, orchestrate two elementary age boys and not l...