A CHD Super Mom & Gerber Baby

 VOTE

My cousin. Its hard to explain thirty years of knowing someone. A quiet, reserved, smart, independent woman. A woman who took a leap of faith to meet and then marry an incredible man. We may not be BFF's and share all our secrets, but we have forged our own friendship.
How little I knew her until the pregnancy of her second little boy.

You see he was born with a Congenital Heart Defect. This photo of Heather and her brand new born baby is from the precious first moments before he was taken away. (Visit her Blog, The Sweet Geek's Blog Here)

While its not hard to agree to placing your baby in a lifesaving device like this one, knowing that your baby is going to undergo heart surgery in a few days... there are few words to express the emotion, but you can read the birth story of Aiden here.

The surgery went well.
That is to say they were able to close most of the hole and open up the blood flow.
He was a trooper.

His parents finally breathed.
Finally slept.
Finally hoped.
Months of waiting were over and months more were ahead.

5 months old and already a second surgery is being proposed - the hole has grown and the artery has shrunk. They will have to monitor him over the coming months to see if it will correct (it's only grown worse) or if they will bring in him for another surgery.
In spite of it all, Aiden is a very happy young boy. He adores his older brother. He laughs, smiles and loves to be held.
And my cousin, the beautiful brave woman that she is, is happy. She is happy that he is growing, that he is off the feeding tube, off the oxygen tank and mostly that he is such a happy baby.
She celebrates his life. All the little moments so many mothers forget about or want to sleep through.
To that end she entered him into the Gerber Baby Contest and I can't think of a baby or a family who deserves it more. Please take the time to vote.

She is also the second woman to be awarded the Super Mom Award!

To read what it mean to be a Super Mom - Please Click Here

Heather has done and gone through so many Super Mom Moments its hard to choose which one to award this too - but I pick putting her baby into the Gerber Baby Contest.

In spite of all the struggles and worries - they celebrate!

How amazing!

 

We will end this wonderful story, with an explanation of  Congenital Heart Disease

What is a CHD?
You passed me in the shopping mall…(You read my faded tee)

You tapped me on the shoulder…Then asked…`”What’s a CHD?”
I could quote terminology…There’s stats that I could give…
......But I would rather share with you…A mother’s perspective.
What is it like to have a child with a CHD? it’s Lasix,aspirin,Captopril…
It’s wondering…Lord what’s your will?…It’s monitors and oxygen tanks…
It’s a constant reminder…to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held her…(I’d waited so long)
It’s knowing that I need…to help him grow strong…
It’s making a hospital…home for awhile…
It’s seeing my reward…in every smile.
It’s checking his sats…as the feeding pump’s beeping…
It’s knowing that there… is just no time for sleeping…
It’s caths,x-rays and boo boos to kiss…
It’s normalcy…I sometimes miss…
It’s asking…do his nails look blue?
It’s cringing inside… at what he’s been through.
It’s dozens of call to his pediatrician…
(She knows me by name…I’m a mom on a mission)
It’s winter’s homebound…and hand sanitizer…
It’s knowing this journey…has made me much wiser.
It’s watching him sleeping…him breathing is steady…
It’s surgery day…and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)
It’s knowing that his heart… must be repaired…
It’s waiting for news…on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends… with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar… down my child’s small chest…
It’s touching it gently…and knowing we’re blessed…
It’s watching him chasing…a small butterfly…
It’s the moment I realized…I’ve stopped asking…why?
It’s the snowflakes that fall…on a cold winter’s day…
(They remind me of those…who aren’t with us today)
It’s a brave little boy…who loved Thomas the train…
Or a special heart bear…or a frog in the rain….
It’s the need to remember…we are all in this plight….
It’s their lives that remind us… we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.
And no…we’ll never be the same…
It’s changed our family…
This is what we face each day…
This is…a CHD

A Truly Super Mom

My BFF.
We have been best friends for 13 years.
In so many ways I have found her to be one of the most incredible, dedicated, hard working women I have ever known.

She could have won this award several times over, but today a day when she is tired, broken and scared.
Is the best of who she is.










This is her daughter beauty.
She is Autistic.
She is brilliant, sweet, repetitive, loves her Ipad, flowers and is amazing at spelling and reading.

In a few short weeks she will graduate Kindergarten.
Due to a few minor issues (not being potty trained, picky eating, issues with noise, lights - easily distracted ect.)
They (the school board) decided to place her next year in an S.E.L school.
In theory and on paper this seemed like it might be a good fit.
I had at least talked my BFF into giving it a fair, open minded evaluation.

That evaluation happened today under the terms of an "observation" day. Where Tired Mom and Beauty had a 1/2 hour appointment to tour her class, meet next years teachers, observe and ask questions.
Before I begin to describe what she told me over the phone I want to give her props for not screaming and running from the room - which I might have done.

The room was small. The teacher tall, thin and not very friendly or welcoming.
The sensory corner was a bean bag and a balloon.
The aide was stern and bossy - terms like, "I told you to sit." "Where did I tell you to be?" (mind you this is a 1st grade Autistic class of kids....)
They don't have or use a PEC's system.
They don't have a daily schedule or routine.
They use Conditioning Behavior. (treats for following instructions - discipline for not)
DISCIPLINE - they had a 3x3 gray BOX, that kids are placed inside of.
Not for when they are having sensory overload and put themselves in there - as a discipline.
Mind you this is a non-violent, verbal, mild/med autistic class.
This may have been ok in a different class room - but FAR overboard in this one!

 
Her response to this classroom? No way. Not my daughter. I will find her a private school, tutor, homeschool her, ANYTHING before I let her in that room!
So while my BFF is emotionally drained, tired and slightly defeated about this set back. I told her, to be proud and wear her Super Cape for the day.
So many parents don't take the time to inspect or question. To find the right fit for their child.
Beauty has made so much progress - come so far.
She is now spontaneous. Loving. Empathetic. The most amazing thing that she does now is free, imaginative play.
Putting her in a class with Behavior Conditioning - could and most likely would erase 2 years of floor time therapy to teach her to think, imagine and to do things for herself.
This class maybe wonderful for another child, not her.

Thus I nominate my BFF, Tired Mom to be the first recipient in the Super Mom Award.
Rules are very simple. Accept. Post the Award in the acceptance blog (and anywhere else you choose), tell your story about the event that prompted the nomination.
If you find another Super Mom - share the award - one at a time linking back to me so I can add them and their stories to my new Super Mom page.

As for my readers, followers and friends - I will be watching! The Super Mom Award will be passed on!