Tag Archives: 4q deletion

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.

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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)]


‘Appointment’ is a Four-letter Word

Someday, perhaps as I drift through the pearly gates in the EZ-pass lane, I will get the answer to one of my most burning questions: Why the hell is it that a single task requiring a single phone call to schedule a single appointment can be the most crippling and insurmountable undertaking for some of the most brilliant, capable women on the planet?  I am talking about myself herePardon me if my Snark font is broken. 

I have a ‘to-do list’ like everyone else.  It’s rather large like everyone else’s.  There is nothing too ridiculously overwhelming on that list of mine, unless you count ‘reshaping the world’ a remarkable goal.  I mean really, I would consider a federal bill to make autism therapies accessible for military families a rather cool objective to check off my list. 

I digress. 

I am pretty confident that I am not alone in my quest for an answer to the above.  I have met many incredible women who accomplish more in an hour than most do in a lifetime.  I surely wish I was so motivated.  However, there are these minor tasks on our lists that still manage to elude a great number of us – scheduling appointments.  

Maybe it’s the commitment implied by the word ‘appointment’.  Maybe it’s the going-to and hearing-about-that-too that we are avoiding. 

Lord knows RM has seen her share.  Those first two years were exhausting and we met more docs than I ever care to count again.  When you are claiming hospital parking fees on your taxes, you’ve been to ‘lots of appointments’. 

So I found out yesterday that RM hadn’t been to the eye doctor in three years.  The sheer guilt was motivation enough for me to sit down today and go through the list of specialists she is overdue to see.  Crap.  Neurology.  Cardiology.  Gastroenterology.  Plastics.  Orthopedics.  All overdue. 

Maybe when the everyday is fought so hard for just to get through it, then the rest seems like gravy.  Is it urgent that she see these docs tomorrow?  Well, not really.  Is it important?  Certainly.  

Maybe I just cannot take hearing one more time that my daughter needs something else

I made two phone calls today.  I scheduled neurology for tomorrow thanks to a last-minute cancellation and I requested an appointment with the plastics/microsurgery office about her pinkie finger.  

And then I was done.  

Two out of five ain’t so bad. 

Cheers.


Put Down Your Hammers

RM isn’t quite there yet.  Surely, she will always be unique.  But right now, at 5-years-old, she is safely tucked away at an outplacement ABA program that caters to exactly who she is.  There are only square pegs there.  From staff to students.  All square pegs.  It’s a safe space for her to learn how to learn.  Period. 

But someday, she will be out in the world; whether in an integrated classroom at the public school or as an adult in the workplace, she will need to fit somehow.

Stimeyland wrote an amazing post, “Not Even Wrong”.  And I want you to read it.  I want everyone to read it.  It applies to everyone.  It applies to me.  It applies to my neurotypical son who is not so typical and it applies equally to RM.

So please.  Read on.

“…It also perfectly encapsulates what I want for my kid—a place, an existence, where it is okay for him to be not even wrong. Because I love the way Jack’s brain works. I love the way autism has given him this unique perspective that lets him come up with some of the most amazing things. I adore his not even wrongness. I want him to find a way of life where starting from a fundamentally different point of view is an asset to him and where he can be valued for that.”

For the entire article, please go to Stimeyland.

Stimey is mom to Sam, born October 2001; Jack, born May 2003, and Quinn, born May 2005.  Stimey is a stay at home mom among various other part-time endeavors and jobs, including learning about parenting her autistic child (Jack).

Stimey also founded and runs AutMont, a website dedicated to autism-related events, information, and community in Montgomery County, Maryland. AutMont is also on Twitter and Facebook. Email Stimey at: stimeyland@gmail.com or follow her on twitter: http://www.twitter.com/Stimey


Whip Me Up

It was the first thing I noticed this morning as I dragged my weary bones out of bed.  That unmistakable autumn howl here in New England.  An eerie, echoing wind that is difficult to do justice if you don’t already know its sound.  

It whips around, weaving in and out of the cookie-cutter ranch homes on our street.  It lifts the reddened leaves from the pavement and scatters them elsewhere.  I can smell the wind slipping in through the cracks around our doors and windows and I think to myself that perhaps it will be a very cold winter this year.  

But today looks as though it will be a beautiful day – dotted high clouds and a sharp crisp in the air.  But I’m not buying it.  I am angry.  I feel battered and beaten. 

I know how to make good from the bad.  I have had lots of practice in the last several years.  I really do often fight the urge to complain, rather I embrace the suckage and try to find the silver lining.  That damned silver lining. 

We have had success at hockey games before with RM, but this time she unraveled right before my eyes – and so did I.  It didn’t matter what I had packed in to make her comfortable or whether I bought her soda – or a doughnut – or a pony at that point – it just was physically painful for her.  But we had rinkside seats yesterday that were a gracious gift from dear friends and The Boy had nearly shat himself with excitement to experience a game all up in his face.  So when RM began screaming NO!!! I took her out into the concourse to give her a chance to regroup.  It never happened. 

I felt like one of those color-streaked leaves being lifted and slammed onto the pavement – over and over again.  I can only imagine how much more painful it was for my baby girl.  

Silver lining.  Silver lining. 

Ok.  There was a silver lining to my baby’s pain yesterday.  Unfortunately for her, it was the joy that hockey game brought to her brother.  It was the small amount of time that The Boy and his Daddy sat together on the glass and watched two awesome fights break out right in front of their eyes.  It was the soda and popcorn and fist-pumping and cheering that The Boy ate up like candy.  

And it was the comfort I witnessed as The Boy took RM’s hand in the car on the ride home and just held it for a spell.  That damned silver lining was there in the moments of conversation that evening with The Boy and the opportunity to hear him recap the 2nd Period and how the glass shook from the glorious violence of a great game of hockey.  I watched and listened as his face glowed while he spewed all the gory details. 

 Then The Boy’s tears came and I panicked and my heart pounded as I thought Dear GOD, what next?  I cannot take any more suffering tonight!  “I felt so sorry that you and [RM] were stuck out in the lobby that whole time.  I’m sad that she hurt.” 

Silver lining.  Silver lining. 

“I get that, Snugglebear.  But you listen to me and you promise me something, ok?  Don’t you ever feel sorry for your sister.  Not ever.  She is happy.  And she is perfect just like you.  And she hurts sometimes, yes, just like you.  But don’t you ever feel sorry for her.”

I grabbed my son’s increasingly large and lanky body up into my arms and squeezed him so tight.  I felt so close to him and suddenly so relieved that this moment had come to me – a silver lining – out of a day of pain. 

The Boy loves his baby sister and I am really so blessed.  No matter the winds that howl around us and threaten to whip us up and batter our hearts – there are beautiful days ahead.  I will spend a little more time today being angry and feeling beaten because I am allowed to do so.  We all are.  But then I will step outside and welcome the sun once again. 

It’s what I do.

 


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


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