Monthly Archives: July 2011

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!

 

 

 


Still Workin’ for The Man

[Ed note: This was originally posted on March 21, 2011. I think it fitting to share again since the introduction of H.R. 2288 – Caring for Military Kids with Autism Act (CMKAA). This legislation would make autism therapies a part of TRICARE Standard, and therefore available to dependents of retirees.]

[Workin’ for a Livin’ by Huey Lewis and the News]

 

How do you look a battle-weary soldier in the eyes and say:

I know you are exhausted, My Love. I know it has been a long road through hell and back again –

More than once.

Yes. 25 years IS a long time.

But you cannot retire just yet, My Love.

Yes. You will have to deploy again – go through hell – again.

I’m sorry, My Love.

 

On the topic of our healthcare crisis in this country, there are so many arguments to be heard. So much talk about the costs; the political drama of partisan strategies and taxes, who should pay what and how should that money be spent.

When I think of the healthcare crisis in this country, so many faces come to mind.

I see the troubled face of a retired nurse of more than 50 years service in the healthcare industry. I have listened as she shared her experience in a rehab home recovering from a broken leg. “Nursing isn’t what it used to be.”

I see the tear-soaked face of a mother who has sat in a clinic waiting room for more than 2 hours with her screaming infant. With no place else to go, she prays her name is called before she has to leave because she cannot miss another shift at work.

I see the embarrassment on the leathery face of a day-laborer asking the pharmacist for just a few pills of his monthly medication, because that is all he can afford.

I see my daughter’s chubby-cheeked smile. I am terrified.

Do you see their faces?

Do you see your own? Or that of your child?

And there are so many more to see.  Folks who have beaten cancer, and those who have not.  The unemployed ‘wealthy’ who find themselves homeless because cancer was the last thing they could afford.  The working poor in this country that are served eviction notices because a week of the flu cost them so much more than a bottle of aspirin.

I also see the face of a brave and selfless soldier.

Whether the face of a Wounded Warrior who cannot get the care he or she requires and deserves, or a father of two who has served his country for 25 years and cannot secure his own family’s future healthcare.  It IS a crisis.

1 in 88 active duty military dependent children live with autism.

Only 10% of those children are receiving the autism therapies and care they require.

10%.

Though not an easy task, all active duty dependents are eligible to apply for autism benefits through the military’s TRICARE insurance and ECHO program, and therefore could theoretically obtain it. The access is sketchy at best for many of these families. With changes of duty station, cycling deployments, and inconsistent providers, even the most diligent parents fail to get what their child with autism so desperately needs.

Now hear this – the moment the child’s soldier retires – that’s it. Done.

No more ECHO. No more autism coverage.

Retirees – WHO HAVE SERVED OUR COUNTRY FOR 20 YEARS – are not eligible to access the autism therapies that TRICARE provides active duty dependents.

My husband is 43.

Our daughter is 4.

We are ONE YEAR into her autism diagnosis. My brave and mighty soldier is burdened with the weight of knowing that he must choose insurance coverage his baby girl needs over retirement he so richly deserves.

25 years of service.

3 wars.

Countless medals and citations.

It isn’t just autism, either.

The ECHO special needs coverage program is what we have relied on so many times throughout RM’s first years with 4q deletion syndrome. It covers durable medical equipment, respite care, supplies, formulas, and home nursing care.

THE MOMENT A SOLDIER WITH A SPECIAL NEEDS CHILD RETIRES – ALL OF THE ADDITIONAL BENEFITS ARE GONE.

Let’s do some math and then I’ll let you go.

Most career, active duty military members joined when they were just babies themselves, between 18 and 21 years old. Let’s say a soldier joins at 18 and has a child when he is 25. That child is diagnosed with autism at 3 years old when the soldier is 28. The soldier is eligible (and often forced) to retire at 38, when his child is 13. That’s it. No more autism coverage.

Did I mention that this soldier retired at the rank of an E-6 Staff Sergeant and earns a retirement check of just $1,815. per month before taxes???

 ♦

I love you, Honey. I know you are tired.

I know.

I’m sorry.

 

 

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


Keeping Our Cool in StimCity

RM just zoomed into the living room, circled the sofa three times and zoomed back down the hallway. 

The Boy is glued to Electric Company in the living room. 

SGM is in the garage. 

It’s a ‘typical’ Saturday morning.  Though here in StimCity, that is not so typical. 

First off – it is still almost unsettling to have the SGM here on a quiet Saturday morning.  He is not in Afghanistan, or at drill, or at training somewhere without cell service.  He’s actually HERE.  Amazing.  *sigh*  

I love him so much. 

RM just breezed through again.  This time making two laps around the sofa, flapping wildly with excitement and with a huge smile on her face. 

It was a record 102 degrees here yesterday and is slated to hit 99 today.  After a brief passing shower this morning, the sun is out and the heat is on.  But I’m tucked away in my nest, A/C on, sitting here relaxing.

Anyways, this is nice.  

We had plans today to meet up with a whole gaggle of other autism families at ‘Autism Beach’.  A state beach exclusively designated for persons with disabilities and their families.  In other words, ‘autism-friendly’ as Jess from Diary of a Mom would say.  But with the forecast calling for nearly 100 degrees and stifling humidity – I called ‘Uncle!’ and was the first to bail.  My regrets to bow out went something like this: 

“Putting this out there now – I don’t do the beach to begin with (if I haven’t mentioned previously, the SGM doesn’t because of the six months he lay in a sand dune in Kuwait) and I generally don’t do temps over 90 outdoors.  I am a pasty, redheaded Irish woman and my family is riddled with skin cancer.  I sweat profusely from mid-May to late October.  With that said, I also appreciate that you all won’t try to convince me to do something I won’t be happy doing – so I am giving the heads up now that I may put the kabosh on us heading to Autism Beach tomorrow.  If we miss you – know that I REALLY will miss you, but know that we’ll have other less sticky opportunities to chill out together (ha – get it?!) XOXO Love you ALL.” 

The rest of the gang soon followed suit.  Seemingly everyone was in agreement that it just wasn’t a good recipe for a bunch of hot mommies and stimmies running around in the blazing heat at a beach with a no-alcohol policy.  That combination wouldn’t likely be healthy for the daddies or the sibs, either.  We will have to make it to Autism Beach another time.

So here I sit.  On a quiet Saturday morning.  No particular plans.  Happy babies doing their thing.  And a handsome, sexy husband who is HOME, now sitting next to me. 

Oh – and my coffee is still hot.  This is so very cool.

Cheers! 

Rachel


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.]


Famous Last Words

“She waited for you!” 

My heart was POUNDING.  I was shaking from head to toe and literally thinking to myself ‘oh dear god I need to calm down or I am going into labor’.

I had just hung up with the Sergeant Major (SGM).  After several months deployed to Afghanistan and five long days of travel, he was finally calling home from a payphone on US soil.  It was ten minutes to midnight on Saturday, July 15, 2006 and he would be home by Monday afternoon – plenty of time before my scheduled C-section that following Thursday.

I sat down and still shaking, began to realize there was no going back.  I was now so excited at the thought of seeing my Love again that my belly was tightening and an overwhelming feeling of ‘this is it’ washed over me.

Within 30 minutes of that phone call my water had broken and I knew that SGM wasn’t going to make it home to greet her.

We were so close.  I fought back the tears and tried to stay calm.  I dialed my sister who was ‘on-call’ and told her she had just won a front-row seat to watching her Goddaughter being born.  She picked me up shortly after and off to the hospital we went. 

We knew RM was breech and I had been waddling my way up to the maternity department for the previous three months for non-stress tests because ultrasounds were unable to get clear pictures of RM’s heart and her size was slightly smaller than expected.  She also had an enlarged umbilical cord, so docs had wanted to keep a close eye on her.

 

Enter hotty anesthesiologist at 1am into a maternity room with solo Army wife and snarky big sister and it is a recipe for mischief.  I am pretty sure he was quite frightened by our obvious flirting and incessant teenage giggling – way inappropriate – but considering I was about to have a baby without my baby-daddy there to hold my hand, I figured it was like a free pass or something.  And I’m pretty sure (since she said so about a dozen times) that as thrilled as my sister was to be there with me, she felt enormous guilt that her brave-soldier-brother-in-law was missing it all.

6:01am on a beautiful Sunday morning, my baby girl arrived on the scene.  It was eerily quiet.  She was worked on by the nurses for what seemed like forever until that muffled cry began.  That cry.  It didn’t sound right for sure.  But I was exhausted and trying SO DAMN HARD to push the vision of my missing soldier out of mind and just keep craning my neck to get my first glimpse of my beautiful baby girl.

 

And she WAS indeed beautiful.

Happy Birthday, My Miracle.  May this next year be blessed a thousand times over by your gifts you share with others and your smile that lights the world!  Mama loves you, Baby.


Shorted on the Short Bus

Listen.  Autism involves a lot of urinary incontinence, poop-flinging and sometimes it’s just plain old messy.

I know this will sound crazy but I was blessed by a puddle of pee yesterday and I am praying you will read this and receive the good juju from it as well.

RM has been potty-training at school for the last month or so and has found a great deal of success.  However, toileting is a long process for many of our kids with autism so RM wears underwear during the school day but wears a pull-up to prevent accidents while she is riding the van back and forth.

The other day RM came home from school completely soaked.  She had left school in underwear instead of a pull-up.  A minor oversight.  Nothing to freak out over.

I sent a text message to the van monitor and asked her to check the car seat to see if it was wet.  It was.  The van came back by and I grabbed the car seat out of the back so that I could wash the cover before school the next morning.

By the time the van pulled away again I was shaking.  I had turned the seat over to take off the cover and on the label found the manufacture date – 1998!  My child had been riding in a car seat that was several years past expiration.  Did you know car seats expire?   AND I learned that my daughter was TEN pounds and FOUR inches over its limit.  I. WAS. PISSED.

I called the transportation company and spoke to “Candy”, the manager.  I had previously spoken to her about a proper child safety seat for RM way back in April, a week before she started at her current school.  I had given this woman RM’s height and weight and advised her that RM needed a 5-point-harness seat rated for up to at least 65 pounds.  She said, ‘Absolutely’.

Pay close attention to what I am about to admit to, because I pray no one else falls into this trap themselves.

From the first day the van arrived to take my child to school, more than 15 miles away through three towns and over two major highways, I had my doubts that the seat RM was riding in was the right one for her.  But I said nothing to the company about the seat she was given because I wanted to start off on a good foot and build a peaceful relationship with the folks transporting my baby every day.  DO NOT MAKE THE SAME MISTAKE.

Any persons responsible for transporting your child to and from school MUST follow all child safety seat regulations.  The seat must be the proper type, size and rated specifically to meet the weight and height of your child.  If your child is over 40 pounds and 40 inches tall – they MUST be provided a larger convertible seat (most this size can be used with a 5-point harness up to weights of 65-80 pounds or as a belt-positioning booster up to 100 pounds).  EVERY SEAT has a label usually underneath or along the side that lists the date of manufacture, the expiration date (usually about 6 years) and the weight and height limits.  All seats and vehicles being used to transport students should be equipped with the LATCH system.

PLEASE!  Check your child’s seating on school transportation and ALWAYS remain aware of the child safety seats you use in your own vehicles.  Does your child still meet the weight and height requirements?  Is your seat installed properly?  Are you securing the buckles and chest straps in the correct position?

If you are unsure of the child safety seat being used for your child, contact your local police department.  Most departments have at least one member dedicated to performing child safety seat inspections and you can request a free inspection not only for your personal vehicle, but for your child’s school transportation as well.

Do not take for granted that your child is being properly secured in an appropriate child safety seat.

I am so grateful for that puddle of pee.

Cheers,

Rachel

[Ed note: I failed to mention that after I ripped “Candy” a new one, I nearly choked when she spoke of her intent to ‘dispose of the seat when it is returned’.  NO WAY, LADY.  We threw that 13-year-old piece of crap seat in the garbage ourselves.  I shudder to think of the child it would have been used with next.  No way.]


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