Tag Archives: 4q

Rose Colored Glasses?

Apparently, I am determined to halt time in its tracks.

I have been touting for weeks how great RM is doing in her “new” glasses that she just got about six months ago. *ahem* But as I read THIS I realized yet again that it has really been twice that long since her last eye appointment, and that means the glasses are from A YEAR AGO.

I am SO ON TOP OF THINGS.

I started wondering why I seem to have such a difficult time with this crap.  From the moment RM was born, we have had appointments for this and that so frequently that I needed a huge schoolhouse-sized dry erase board in my living room to keep track.  But those days slowly faded away as she grew healthier and so faded away my own talent for organization.  I am kind of a mess these days by comparison.

I once had itemized checklists for our three major shopping stores – grocery, wholesale, and Target.  We always had one of everything in stock, we never ran out of anything.  My house was a well-oiled machine and we had real dinners every night.

I am sure I even had a Binder of Women.  [sorry, couldn’t resist]

Anyways, these days we eat whatever is most convenient at the moment because I never remember to take something out of the freezer, we are always out of everything, and me and the dust bunnies high-five as we pass in the hall.

Oh, and those glasses RM got last year? Well, no wonder they are warped and falling apart.

RM in her first pair of glasses. November 2011.

I thought I was being so proactive this time, seeking out a new pair of indestructible glasses for RM because she was now wearing her glasses all day at school.  I was so proud that it only took six months for her to get used to them.  Especially when her ABA program started out praising her for keeping them on for a full minute.

But apparently it has been a year.  A full year.  365 days.  Slowly inching from one minute to two to ten.  Now she wears them fairly consistently.  Never reads without them.

Did I mention she is reading now?

Reading at bedtime. October 2012.

Time sure does fly when wearing rose-colored glasses.

RM’s new sport goggles. 10/16/12.

Cheers, my friends.


It’s in the Details

 

Ironically, on the way home this afternoon from Boston Children’s Hospital, I spotted a license plate on a blue Beamer screaming by – “DETA1LS”.

It truly is in the details, isn’t it?

When I look at my beautiful baby girl, now five-years-old and full of life and possibilities, I see all the details.  Every time I look at her.  There is never such a thing as a glimpse of this child.

I see every new freckle that has taken up residence on the apples of her cheeks.  I see the speckles of gold and brown in her radiantly green eyes.  I see how every wisp of her thick brown hair falls across her brow.

I see every moment of pain, every scar on her chest and belly.  I see every instance in which that belly rumbled in hunger and jiggled in laughter.

I see the pride in her smile for every word she managed to form and was understood.  I see every wrinkle of her nose for every frustration when she was not heard.

I see ears that beckon me to nibble on them because of the way they stick out and pop right into my mouth when I hold her close.  I see little rosebud lips that worked for years to coordinate something so simple as blowing out a candle.  I see her little overlapping piggie toes that she sticks in my nose after a tubby so that I can tickle them and pretend to gobble them up.

And I see her one perfectly unique pinkie finger with a perfect hooked little nail that tells the world she is one of a kind.  And she is mine.

Today we took a drive up to Boston Children’s to see a Plastics guru we shall call “Doctor T” who has made a career of changing little lives with the most delicate precision of nips and stitches.  I knew of him by way of my sister who lost a fight with a lawn tractor a few years ago.  This was the surgeon who specializes in microsurgery and helped to save her leg.  While taking my sister to a follow-up visit way back then, she stopped to show me a side room in the office.  It was filled with shelves of castings of congenital hand and foot deformities that Doctor T and his partner had transformed.  It was amazing.  I felt an instant ease there.  Like it was meant to be.  We left the appointment knowing that I would someday be back to see Doctor T with my baby girl.

We’ve had our share of ‘specialists’ for RM.  Most have been total blessings that not only have cared for her, but have shaped our lives as a family.  They have sat with us through heavy times and listened to us and our opinions on how to best care for RM.  Today was a familiar visit, and we knew right away that we were in the right place with the right person to care for RM.

We talked about how her pinkie causes her pain when its nail is easily caught on things and tears.  We chatted about her adorable overlapping piggies and hammertoes.  We talked about options, about the importance of certain things that could wait until a time when RM could cognitively participate in the decision-making process.  There was never a moment of urgency or fear.  It all felt right.  There was no rush, the conversation was never hurried.  The details were all there.

We decided to take the most minimally-invasive approach to start.  We will let Doctor T remove a portion of nail-bed that appears to be nonfunctional and he will replace with a skin graft.  So tiny, but could make all the difference.  You know, details.  He heard us speak of the importance of keeping as much of who she is intact.

He listened to our concerns about recovery.  How would he cast her hand so that she couldn’t ruin his hard work?  You know, we’re talking about autism here.  It can’t be that easy.  “No problem,” he said.  He will cast all four fingers together so she cannot disturb the graft.  See?  Details.

When I asked where he thought he’d take the skin graft from he initially replied with the standard groin/hip area.  But then he stopped mid-sentence and said, “Well, wait – she has scars from previous surgeries, right?”  Well, duh, lots.  Pick one.  Aflutter with this whole process of actually talking about details it seemed my brain finally caught up to the conversation and I blurted out, “Her feeding tube site!  There’s a bunch of extra skin there, it’s like a second belly button!”

With a quick nod and a peek of RM’s belly it was settled.  “Oh yeah… That’s perfect right there.  And I can take what I need for the finger and leave just a nice little straight line.  You’ll barely see it.”

You see, her pinkie is something she was born with and to us it matters.  We love it.  It’s special.  But that ‘second belly button’ was something done to her and we have no problem watching it disappear.

And there you have it.  Those crazy little details.

RM gets a pain-free pinkie that is still uniquely her own and a chance at wearing a bikini some day.

Over the SGM’s cold, lifeless body.

But you know…. details.

 

[Ed note: Please don’t forget to lend your support to the Caring for Military Kids with Autism Act (CMKAA) HR 2288 –> HERE <–.  And remember, you can harass your Congressperson several times a day at no cost to you ;0)]


Reconstructed

 

Me:  These rocks are freaking HEAVY.

SGM:  It’s hot as balls today.

Me:  No kidding.

§

It was a surprise to have him home yesterday.  SGM had decided to take the day off and help me move some rocks in the backyard.  One of the many hidden treasures in this otherwise old and battered little ranch – a ridiculous amount of beautiful field stones, large and small, that we hadn’t noticed when we first came to look at the house.  Over the last nine years since, I had constructed a small rock wall that flowed along the front and side of the house containing a garden that I had long dreamed of growing.  Many late summer evenings spent tending to young blooms those first few years.  I was so very proud of all I had created – all I had poured my heart and soul into.

But hard times had come.

Prolific weeds had crept in and overtaken nearly every inch of breathing room between each of my precious budding flowers.  There just wasn’t any time or energy left at the end of the day to fight back.  I might grab hold of a single leafy weed or two as I passed by, barely noting the blooms being choked all around.  It was too painful to look more closely and recognize all that had been forgotten and neglected.  I was tired.  So tired.

Two Afghanistan deployments, 4q deletion, autism and family drama had choked the life out of my garden – out of me.  Out of motherhood, marriage and church, too.  There were days I felt hollowed and left to compost.

Those Dog Days Are Over now.  I have spent the last few months rebuilding, renewing.  Everything.  It started with a pile of rocks that I purchased three springs ago.  Dumped at the end of our driveway, it took me more than two years to place the gravel in the garden beds one barrow-load at a time.  Exhausting but rewarding work, it just took so much for me to find the energy among the chaos to get it done.  But this summer was different.  I was relearning what peace felt like.  Rebuilding, renewing.  Breathing.  Relearning love, patience and quiet moments with my babies.  Revisiting the love with my husband – what it felt like before and what made it new again.

Those weeds didn’t know what hit them.

The fury of which I ripped out the old and dying and replaced with new and exciting was dizzying.  But oh, how it felt so good.  Long summer days spent digging in the earth after countless hours wandering the local nurseries until I found just what I wanted to grow.  What I wanted to grow.

It was an amazing summer.  In so many ways.

The spaces between each of my precious buds are opened up once more, free breathing room to blossom.  Space for roots to be nourished, leaves to grow lush and for petals to welcome the sun.  As it should be.

Space in between my babies and me that can now be filled with sweet kisses and a thousand ‘I love you’s.  I feel the love for my children more fiercely and softly than ever before.  It hits me continuously like a freight train of feathers.  Like the moment they came into this world, there is nothing else like it – every moment, every day.  I can feel my heart once again booming, swelling, aching for them.  As it should be.

Now lies space to be Me again.  To be filled with time for reflection, personal pursuits and renewed confidence.  To feel passion again for the sun on my face and the earth in my hands.  I can breathe easy as I sway in the breeze with eyes closed and just daydream once again.

No more weeds.  No more chaos.  No more war.

All of which leaves me feverishly in love with the SGM.  It’s a new love.  It’s solid.  It’s hot.  It’s tingly and it fills me.  More than just a tag-team that survived the last five years, we are in love.  Madly.

Now that the gardens were tended to and made beautiful again, it was time to move forward.  I was ready to build upon what I have and make it new again.  I had always wanted to take the larger field stones and construct a fire pit.  I dreamed of a relaxing space for us.  Snuggling by a fire after a long autumn day of crunching leaves beneath giggly children’s feet.

So there we were, out in the yard working together to care for all we have built together over the years.  Appreciating the old, moving on from the tired, and constructing what remains.  Reconstructing from a solid foundation with an eye towards the future.  A joyful future to be lived in each moment and savored like a fine wine.

Our new fire pit made of old stones is perfect.  Last night after the children were tucked away, tuckered from a day spent in the yard and dinner served at the picnic table, SGM and I enjoyed the new Ranger TV.  And I told him – there was nothing I could want for.  I am so happy.

Thank you, My Love, for all of your hard work out in the yard with me this summer.  Thank you for the strength and love you share.  Thank you for each stone you labored over to reconstruct with me.  What we have built and continue to grow is beyond blessed.


#WordlessWednesday : Soothing Noodles

 

 

 

 

 

 


Breathless

 

It comes in waves. 

Crashing against my every effort to paddle through it.

Breathlessness paralyzes me. 

 

 

The feeling may last a moment – or a day – or for weeks on end.  Most often it is triggered by an event of sorts.  The other evening it happened to be a fair reaction to a bug bite of some kind.  The instant rash, screaming in pain for more than 30 minutes until the meds kicked in.  She never cries.  She rarely feels pain to any degree.  I was in tears myself watching her lay there completely wrapped in the sting.

Then calm washed over her and she took to sleep for the last hour of the ride home.  She never sleeps in the car. 

We get settled in for the night.  I have given her another dose of antihistamine.  She asks “RM bed?” 

“Yes, Baby.  Time for bed.  Climb up.”  I pull the blanket up, stroke her hair and we begin the whispered exchange, nose-to-nose, breathing each other in.

“Good night,” she whispers.  I echo her.  “I love you.”  Again I whisper back.  “See you in the morning.” Yes.  I reply the same and gently kiss her perfect, little lips. 

Will she still be with me in the morning? 

I lie awake adrift in a sea of familiar checklists:  

Who do I call first? 

Will they take her right away?  Who exactly will take her? 

Can I hold her before she leaves? 

Where will she go? 

What will she wear?  How do I get an outfit for her in time?  I imagine you have to order that kind of thing online.  Will they have overnight shipping? 

Will we stay in this house?  I imagine we don’t have to.  No more fighting the school districts, so theoretically we could live anywhere.  I don’t think I’d want to stay here.  But then again, I wouldn’t want to leave her behind here without me. 

Will I go back to work?  No reason not to now.  Will I be able to? 

Will I cry every day?  Forever? 

Will my heart continue to ache as hard as it does at this moment? 

I am being irrational.  I should just get up and go to her.  

Instead I pull the covers tightly around me and snuggle myself in a little further because I am not ready.  I am not ready to let her go.  I am not ready for that reality.  I do not want to go to her yet. 

I am not ready to find her – breathless.

♥ 

From the time she was born, every moment RM has spent in my life has felt like borrowed time.  I understand to my very core that by design every person’s time on this earth is meant to be finite.  God has given me this gift of her for as long as He sees fit.  That is why I love fiercely and try my best to enjoy each moment – good or bad – because I do not have a crystal ball and I do not know the road ahead for her.  She may live to 100.  She may not.  Children with chromosome abnormalities who survive those difficult first few years still have an unknown future.  Any number of disorders, cancers, syndromes or diseases lie in wait.

Love your children, love them hard.  Grieve the moments of anger and frustration with tears but keep moving forward.  Then when you have had a moment to breathe, go back and squeeze your kids.  Kiss them all over.  Zerbert those bellies!  Let them annoy you, tire you and make you belly-laugh until it hurts.  Listen to every blooming knock-knock joke and laugh at the ones that just don’t make any sense at all.   Teach them well.  Have the highest expectations.  Accept nothing but their best while remembering you truly do not know what their best can be so shoot for the moon.  Guide them to the road that calls them.  Appreciate the strengths they have that may not be well understood by most, but could prove to be universally beneficial to all.  Be a cheerleader by teaching them how to find pride in themselves.  And remember above all else – you have more to learn from your children than they shall ever learn from you.

So don’t panic.  Take another deep breath and ride that wave all the way in.  Don’t look back.  Another wave is coming in right behind you.  Keep looking to the shore and let it carry you closer.  Embrace it.  Ride it in.  Just ride it in.  It’s supposed to be fun!

 

 

 


Meeting My Baby Girl

Finally. 

It was the longest wait of my life in that Recovery Room, but I was finally brought to a private maternity room on the floor.  Within minutes, a nurse was wheeling in my beautiful baby girl.  As she passed RM to me – I can still feel the sensation – my heart swelled with a new kind of love, one that would carry me through a journey I had never guessed was coming.

It would prove to be a day filled with mixed emotions, most of which I was unable to recognize at the time. 

I can recall purposefully not looking at the pinkie finger.  Instead I studied every other inch of her.  I can also admit that her overlapping toes were undeniable.  However, it was far easier at the time to believe that any kid who had spent the last several months literally sitting on her toes would be a bit scrunched up in that area.  

But then there was the matter of her very tiny, nearly non-existent chin and very tiny mouth.  She couldn’t latch on to my breast to feed and after failing to breastfeed my son, I really wanted to find success this time around. 

It was a no-go.  She just couldn’t do it.  

The nurse came back with a bottle and after several attempts at that – long periods of sucking that barely drew a drop from the nipple – panic was beginning to set in.  She would cry of hunger, but the cry was a sound I had never heard before.  Muffled.  Like there were cotton balls in her throat. 

Where the hell was my husband?  Why was I sitting here all alone with this baby and getting nowhere, having no answers and feeling that I was sinking into a dark abyss.  Call it denial, postpartum exhaustion – whatever – but I was not bonding with this child.  Instead I was terrified. 

I don’t remember much of that first afternoon into evening.  It would be 24 more hours or so before my SGM made it to the hospital.  In the meantime I was alone.  I had sent RM to the nursery so that I could rest.  But in reality, I think I had done so because I was unable at the time to process that my baby’s entrance into this world was a far cry from joyous. 

I only needed to make it through that night.  Then I would see my soldier again.  And he would make everything alright.

The next day, when my SGM walked into my room, my world was whole again.  He would prove to be the strongest, most faithful soul I had ever known – from that first moment he held her, he knew in his heart RM is perfect just the way she is.

A soldier who commits his life to serving our country innately possesses certain qualities that few of us civilians can fully understand.  SGM has never faltered in his belief that even when the mission is critically compromised, remaining steadfast and courageous can still get the job done.  Failing to follow through is not an option.  He has applied those same principles to RM, and in doing so has taught me to keep fighting. 

If you haven’t done so, please support the Caring for Military Kids with Autism Act – HERE

We cannot change the world without first being the change we seek.

Thank you.

Love,

Rachel


Recovery Room

In the O.R., she was presented to me for a brief kiss and whisked away to the nursery.  I was wheeled in the other direction to the Recovery Room.  With my sister by my side, it would be nearly eight long, heartsick hours before I would get to hold my baby for the first time.

While waiting to get my hands on her, I remained the lone patient in that recovery room.  Just me, my sister and my recovery nurse – an older woman in her sixties with a thick Irish accent. 

I kept asking, “Can I see her now?” 

This was my only C-section, my son was delivered naturally, so I was alright with the idea that obviously it would take a little longer for me to see my baby girl. 

Several hours went by – nothing.  I was told they were keeping me in Recovery because my room wasn’t ready yet.  My sister and I had long since run out of chit-chat.  I asked her to go down to the nursery to check on RM.  She did, quite a few times.  She’d return with yet another update that yes – RM was a cutie – and that the nurses were still cleaning her up, etc.  How messy could my kid be?

It took everything I had in me to push the words from my lips, each one like a cement block chained to my heart, finally – “Did you see her pinkie?” 

My sister smiled and said RM is perfect.  I replied, “but it looks like it doesn’t have a joint in the middle.” 

The recovery nurse turns around from her desk and says, “that’s nothing – look at mine!”  She holds up her right hand to show a pinkie finger that doesn’t bend.  Smiling, she continues by saying, “I was born with it this way and I’ve done just fine.”  My sister and I smile and chuckle along with the nurse and I feel far more at peace.

It would be a hundred more times over the next few years that I would remember that nurse – her sweet smile and her own perfect, unique pinkie.  I truly believe God sent her to me when I needed to know that my baby girl was truly going to be ok – through it all – through feeding tubes and open heart surgery, and autism.  On the darkest days, I remember His gift of her and the gentle smile she shared with me.  Without question, that woman was the anchor to my faith that would save me, encourage me and keep me focused on the beauty and joy that is my precious baby girl. 

But my heart was aching to hold her, and my soldier was still a day away from holding me and being my rock.  I was still waiting in the Recovery Room…

[Ed note: If you haven’t done so, please support the Caring for Military Kids with Autism Act – HEREWe cannot change the world without first being the change we seek. Thank you.]


%d bloggers like this: