Tuesday, February 19, 2013

Blessings and Challenges

   Today, after weeks of calling, emailing, begging, and cajoling, I finally got to see the newest prospect for Noah's next wheelchair.  He has outgrown his current one in both size and functionality, so we are hunting for something completely different.  After countless hours of online research, I fell in love with the ThevoTwist by Thomashilfen.  It is a stroller-looking chair, which I love (as much as we try to ignore it, the constant gawking by strangers in public places gets old, fast).  I had high hopes for the dynamic seating sensors, which might reduced Noah's inclination to body-slam his wheelchair in seeking sensory stimulation.  I also longed for better postural support, as he slumps like a sack of potatoes in his current chair.  We had already tried several other more conventional wheelchairs, and I hated them.  They were heavy, hard to push, and were nearly impossible to fit in our van.  Noah already pushes my physical limits in moving and carrying him.  As he grows and gets heavier, I will need to rely on the wheelchair more and more to move him not just out in the world but also in our home.  I thought for sure this would be the perfect chair, and was racing the clock to get authorization from our insurance before March 1.  (In case you weren't aware, Congress has completely imploded and abandoned their fiscal responsibilities to the American public.  What this means to us, as a military family, is massive benefits cuts.  We've already seen the first round in the form of 40% cuts to home health care and a 30% increase in medication co-pays.  I know more cuts are coming on the 1st, and worry that might mean we can't get the equipment Noah needs if we wait.)

   Well, after all the rushing and stressing, the chair is no good, at least for Noah.  It is adorable and convenient and would probably have been ideal....about four years ago.  He is almost too big for it right now, and during the fitting he thrashed so bad I thought the thing was going to fall to pieces.  I think the rep thought that too!  The frustrating fact of life is that, as he gets bigger, our options for good equipment dwindle dramatically.  They just don't make awesome wheelchairs for big kids.  I was on the verge of tears.
   In the midst of this pity-party, I had to stop and realize exactly what I was complaining about...

My amazing boy, who wasn't supposed to survive birth, much less make it through infancy, is almost eleven years old!

   Yes, this means that he is bigger, heavier, and more challenging to move and position, and I wonder how these things will be accomplished as he gets older.  As he gets stronger, he hurts himself (and us) more often, and feel like there is very little information or support for this issue.

But, my God "knows the plans He has for Noah, to prosper and not to harm him, to give him hope and a future!"  Jeremiah 29:11

And boy, is Noah prospering!  He travels:

He explores:

He plays:

And even rides!

  Lord, help me to remember, on the days that being Noah's mom is especially hard, that it is a blessing and a privilege to do so, and to be thankful for every extra day I have him on this earth!

Wednesday, March 21, 2012

Moving On...

   They put a sign up in front of my house today, and I started to cry.  Don't get me wrong...I signed up for it.  It's time to sell our house, but I'm struggling with it more than I expected.  I'm not sure if it's this way for everyone in the military, but for me, I've never really been attached to places or stuff.  I figure, every few years the Army moves us away from the place, and every few years they lose or break some of the stuff, so I attach myself to the people I meet wherever we go, and I let go of the rest.  It's not hard to avoid getting attached to a rental house or government housing unit, and I truly believe IKEA was made for military familes (why buy really nice furniture just to have it fall off a truck or a boat somewhere en route?).  But this time was different.  We bought this house--our first ever home purchase--and we truly made it our own.  The paint on the walls is my taste, the kitchen is my style.  We've poured our blood, sweat, and tears into this house, and I'm finding it a little hard to let go this time.  We make memories everywhere we live, but I have so many memories tied into the very walls of this house.  My husband and I (after watching ENTIRELY too much HGTV), decided to completely renovate the 1962 kitchen right after we moved in...all by ourselves.  I got to design every aspect of the kitchen.  I tell you, you have never experienced IKEA until you've done an IKEA kitchen.  The clerks all know me by name now, as I think I made 372 trips to the store in the three months it took us to complete.  It was definitely a test of our marriage, and I still owe my hubby big time for the hundreds of hours of work he poured in to that room.  But the end result felt like it had my fingerprints and my soul all over it.  The same is true of the master bath, a battleship gray, cramped hole when we moved in.  Now, it is a very tiny version of my dream bathroom, with gleaming marble and sparkling glass tiles.  It was another test of marital fortitude--when you put two people in a 5x8 room and give them a task they've never attempted (tiling) and throw in slightly unrealistic expectations (mine), it can be a recipe for disaster.  I still laugh every time I look in the bathroom mirror.  We argued more over which stupid mirror to buy than anything else in our entire house!  I love the one we compromised on...it reminds me what a good team we are together.
   As I scrub and shine our house to get it ready to go on the market, and think about who might live here next, I get a catch in my throat.  I try to see my house through a buyer's eyes, to spot areas where I need to rearrange furniture or touch up paint.  But what rushes over me are MY memories here.  My son Noah's birthday party, with friends and family relaxing on the deck, and the kids playing on a bounce house in the yard.  Caleb on the tire swing, sitting there yelling for someone to push him when we all got distracted.  Tuesday night dinners, with our friends from church gathered around the kitchen.  My husband balancing precariously on the roof, hanging Christmas lights.  My band practicing for hours in the basement, fine-tuning a medly of bar-crowd-pleasing songs.  The Japanese maple tree in the front yard, the perfect climbing tree, where Caleb would perch between branches with a good book on a sunny day.  And my neighbors, young and old, whom I've grown to love fiercely.  I wish I could pack them up and take them with me.
   In this transient military life, it is tempting to keep things superficial and temporary, for you never know when the next move may come.  And putting down roots is not only hard work, it hurts when it comes time to rip them up and move on.  But we do it anyway, if only to be able to say that when we lived somewhere, we really lived thereI hope whoever ends up buying our house loves it as much as we do.  As for us, we will move on to the next adventure, and slowly, we will put down new roots.

Tuesday, February 21, 2012

Not Amazing

   I think deployments are like long-distance races.  You prepare for them the best you can, mentally, emotionally, financially.  Then race day comes and he leaves.  And at first, you're feeling good (well, after the tearful goodbye, anyway).  You're thinking to yourself, "I can do this!  I am strong!"  And other people cheer you on, saying "We will help you!  We will be with you through this!"  The first few months you settle into the new rhythm, and you think "I AM doing this!  And I'm pretty badass at it! I can do a year standing on my head!"   And other people tell you "I don't know how you do this...you're amazing!"  And then, maybe halfway through, maybe two-thirds through, you hit that wall that runners face, when your legs start to feel numb and leaden, and your lungs are burning, and you're looking up at a long, upward stretch of road.  That's where I'm at in this deployment.  Nearly ten months into a thirteen month stretch, and still four weeks until he comes home on leave, and I've hit that wall.  I'm so tired.  And I feel anything but amazing.  My patience is thin.  I yell at my kids too much.  I'm not sleeping well.  My older son, who can't verbalize his stress, has begun beating himself in the face, despite my best efforts to calm and entertain him.  What I want to do more than anything is run away, and be alone with no responsibilities, preferably somewhere warm, with a book (OK, a LOT of books).  I know when people say that what they probably mean is, "I think it's amazing you haven't completely lost it and started eating paper!"  Or something like that.  I know that, between caring for a severely disabled child, helping out with my brother (wounded in Afghanistan), dealing with building a house 1500 miles away, and trying to get our house here ready to sell, by myself, it probably is a miracle that I'm not crouched in a corner, mumbling lines from Tarantino movies and eating my fingernails.  That I'm surviving.  But, I'll be honest with you...that sucks!  Surviving is not living, and it's not fair to my kids.  So here's where the hardest part of the race begins.  The uphill climb before the finish line is even in sight.  I can't give up, not just because I don't want to but because it is not an option.  Although I have fantasized about calling someone and saying, "Hi, Army?  Yeah, so this deployment is really sucking way more than the others and I'm just ready to punch out, so can you go ahead and send Hubby home now?  Thanks!"  (Don't worry.  After fourteen years in, I know better than to try any version of that little scenario.)  Instead, I will plant my burning legs one in front of the other and make it up the hill.  No advice from onlookers is necessary, but a little cheering on would sure help.

Wednesday, November 9, 2011

Come Walk With Me...

   The last few weeks have been an emotional rollercoaster of hopes, changed plans, and disappointments for our family.  I don't know about you, but for me it seems that the little disappointments can be harder to bear than the big drama situations in life.  So this morning, I started the day pretty crabby.  I'd just gotten confirmation that our exciting surprise from a few weeks earlier--hubby's unit coming home early from Iraq, by Christmas!!--was now just a cruel miscalculation.  As originally planned, he would be gone for a year, coming home sometime next summer.  I got the boys ready for school and shared the news, grumbling under my breath about Obama and the audacity of hope and brigade commanders and after-13-years-in-the-Army-you'd-think-I'd-know-better-than-to-get-my-hopes-up!  Caleb handled it much more maturely than I, twisting his little face in disappointment for a moment, and then asking if Dad would be home in time for his (Dad's) birthday.  "You can make him the best cake!" he said, eyes lighting up, "and we can have a huge celebration!"  I told him that sounded great, but I still pouted on the inside that it wasn't the same as Christmas...

  After walking Caleb to school, I usually continue walking around our neighborhood for exercise, pounding the sidewalks listening to an iPod loaded with Foo Fighters, Switchfoot, and Seether.  Today I decided to try the trails around the lake near my house.  We had finally had a break in the rain for several days, so I figured I might be able to complete my walk without mud up to my knees.  As I entered the woods at the marina, I pulled out my earbuds and soaked up the quiet of the lake in the morning.  And in the whisper of falling leaves, I heard another whisper--"You can't keep your eyes on the things of God until you take them off the things of man."  In all the stress and emotion and confusion and busyness and planning and....noise lately, I had forgotten to listen for the peace that God always gives me when I finally let him do some talking.  That's all He said, by the way, but it was all I needed.  I will change my plans...again...but this time I will do so with joy!  For God still has my back--I just forgot that for a little while.  I kept walking, finishing my loop around the lake and soaking up the gift of peace.  I took some pictures on my walk, so if you're in need of a little peace today, come walk with me...

   Christmas this year may be a little bittersweet, but I will try to remember and hold on to today.  Six more months of walking through these woods is hardly something to complain about!  And, just for good measure, I tried to capture the sound of my walk this morning to share (the "rushing" sound is actually the stream flowing under the bridge I'm on, though in the video it sounds like recording noise).  Please bear in mind that this was three miles in, and I was squatting down on a gravel path, so my videography skills leave much to be desired.  Maybe just close your eyes and listen....:)

Sunday, May 22, 2011

3,285 Bonus Days

  Today is my son, Noah's ninth birthday.  I know I'm biased, but he is kind of special.  He has lived more than 3,285 days longer than any doctor expected he would before he was born.  When I was pregnant with him, we discovered through ultrasound that his brain and spinal cord had not formed properly. He had severe hydrocephalus (fluid accumulation in the brain), multiple malformations of his vertebrae (and some were apparently missing), an Arnold-Chiari III malformation of the skull and an encephalocele (a "bubble" of cerebral-spinal fluid) high on his neck, and a brain malformation called Schizencephaly, which is a break or cleft in the outer brain structure.  He was also missing several interior structures, including the corpus collosum and septum pellucidum.  We were told all this when I was 20 weeks pregnant.  The only part that made any sense at the time was the prognosis--death at or probably before birth.  The term the doctors used for this combination of defects was "incompatible with life."  We were told there were options....

   Fast-forward nine years, through three months in Neonatal Intensive Care, multiple surgeries, bones growing where no bones had been, many days we thought we'd lose him, more days in Pediatric Intensive Care, six different hospitals, seizures and panicked ambulance rides, therapy and small victories, more medical equipment than I can keep track of, more medical training than I ever thought I'd have, and more joy than I ever thought possible....

   My sweet miracle boy is nine!!

   So this post is to you, Noah.  They said you wouldn't survive--you did.  They said you'd never breathe on your own--you did.  They said you'd never hear (they still say the tests show you're deaf!)--but you hear perfectly.  They said you'd never sit up or crawl or walk--you do.  They said you'd never be able to learn--you do.  They said so many things about your limitations--and you blasted through every one with that huge smile on your face.  You are my trooper, my tough guy, my sunshine boy, and I am blessed to have had you in my life for these past nine years!

Monday, May 16, 2011

Tough Questions

As most of you know, in February my brother Tim was severely injured in Afghanistan.  He is an explosive ordnance tech and stepped on an undetected IED while doing a sweep.  He lost both legs and one arm, and his other hand was shattered.  He is recovering amazingly well, but the first couple of months were pretty tough.  Once he was out of ICU, we took the boys to visit him.  Caleb, who's seven, had a lot of questions but seemed to handle everything pretty well.  We had no idea how much he was impacted until several weeks later.  We were talking about Rob's upcoming deployment, and Caleb got very teary-eyed.  We asked him what was on his mind, and he asked if Daddy would lose his arms and legs in Iraq.  We assured him that Daddy would be fine, because God would protect him.  "But God didn't protect Uncle Tim!" he sobbed.  Talk about a punch in the gut.  I took a deep, rather shaky breath, and we had a good, long talk about God, prayer, and divine protection.  God did protect Uncle Tim, we assured him, because he could have died from his injuries.  And if Rob were to get injured in Iraq, we trust that God would take care of him, and our family.  We know this because we've seen His provision in our lives in the past.  We've seen miraculous healing in Noah and watched him surpass every medical expectation.  We trust that God does work all things together for our good.  The harder truth is that God doesn't always "work things" the way we think is best.  The better part of faith is believing that the One who sees the big picture has our best interests at heart, even when the small view is terribly messy and painful.  For those we know whose desperate prayers were answered with a "no," who lost husbands and fathers and brothers, are they any less cared for by God?  As difficult as it is to see with our human eyes, we must trust with our hearts that the answer is of course, no.  God cradles those in the palm of His hand, and holds them close to His heart.  This is the God I know. 
   These are things not easily explained to a seven-year-old.  The irony is that he probably has an easier time accepting them than I ever will.

Monday, March 28, 2011


   I am always amused by the workings of my seven-year-old's mind.  Driving home from church the other day, we passed an area under construction near our house.  The identifying signage was typically vague and ill-placed, in my opinion.  I commented to Rob (my husband) who was driving that I thought we had missed the exit.  He jokingly said, "Well, I guess we'll have to drive all the way around [the Beltway] and come in from the other side."  Caleb, from the back seat said, "We have to drive all the way around the whole world??!!"  Rob launched into a sarcastic explanation of our new route home, complete with desert crossings and large watercraft to navigate oceans.  Caleb wondered how we would get our van across the water, and Rob told him we would take a ferry.  Caleb scoffed at this idea.  "That's imPOSSible!"  Rob challenged him, "you don't think I could drive all the way around the world in one day?"  "Of course not," said Caleb, "because there's no such thing as fairies!" 
   And a certain Veggie Tales song suddenly sprung to mind: Homophones...Homophones!