Tag Archives: disability



By Korrie Anne Everett

Here’s the story of my children. H, my youngest son, is 2 1/2 years old now, and has Down syndrome. My daughter, A, has chronic lung disease, and ADHD. R has poor vision due to retinopathy of prematurity. So far, she has not received a diagnosis of ADD of ADHD, but I have a feeling it’s not far off. My middle son, M, who will be 4 on Halloween, has ADHD and ODD. Each of my children has a challenge in this lifetime, but I try to help them see it’s what makes them special and unique. They take on it as a blessing and an opportunity. We emphasize that everyone is how they are because that is how God made them- that life would be boring if God made us all the same. 🙂

This week has been hectic for us with all 4 kids, a tummy virus, sinus infection, no sleep and the start of kindergarten!  I always thought I would be the Mommy hiding outside the classroom, peeking in the window to be sure the girls didn’t miss me!  It was such a special day for all of us- a day I never thought we would get to have; a day I feel so blessed to experience.

My daughters (A and R) went off to pre-k through the school district last year, and they even rode the bus. But, this year, I’m driving them. I was not thrilled with the idea of them being on the school bus with 4th and 5th graders. A is really upset about me driving her. She is telling me,”I am a big girl now, mommy!”

Five and a half years ago, my daughters, along with their triplet brother, were born 16 weeks prematurely at 24 weeks 3 days gestation. The “border of viability.” I will NEVER forget the doctor telling me what we could expect and what they would do to help the babies. Three days before I delivered them, the neonatologist came to speak to me about what would happen. He said, in all likelihood, the babies would not survive the cesarean section delivery. He gave us the option of having them delivered then just being with them until they died. We told him that it was NOT an option, and they would be doing ALL they possibly could to save the triplets. Then the Doctor told us that IF they survived (and their chances were less than 10%), they would most likely be severely retarded (HIS word, not mine). They could have cerebral palsy, they could be blind, deaf, developmentally delayed, and probably never catch up to their peers. He said, for them to survive *intact* (with no delays at all) or disabilities, it would be even less than 10%. It most likely was not a realistic possibility– they would be delayed. Well, I was already deeply in love with those 3 babies.  I knew their names, their personalities and what they would look like! There was NO WAY I was going to give up on them that easily!

Three days later, at 5pm, I was rolled into the OR, scared to DEATH, quite literally, and shaking so bad from terror. The babies HAD to come out. We were all dying– me from pre-eclampsia (high blood pressure), HELPP syndrome (organs begin shutting down), and pulmonary edema (fluid build up around the heart). My son, J’s sac had broken and the Doctor suspected he had an infection. In pre-eclampsia, the placentas begin shutting down too and they are obviously the babies’ lifelines.

At 5:24pm, J arrived weighing one pound and five ounces and 11 1/2 inches long. I heard a nurse said, “Oh my God! He’s trying to cry!”  The Doctors had warned me previously that the babies would most likely NOT cry or even make any sounds. They were still too tiny and sick. Next was R, at 5:25pm, weighing 1lb 6 ozs and 12 inches long.  She made a sound like a kitten mewing. Thirty seconds later, A, arrived at 1lb, 2 ozs and 11 3/4 inches, madder than heck and bellowing as loud as an 18 ozs baby can!!  It was still not much more than a tiny squeak, but it shocked the 35 medical professionals in O.R. that day! She’s a feisty little girl! 🙂

I got to see their tiny little faces under those little caps and all swaddled in blankets as they rolled them past me on the way to the Neonatal Intensive Care Unit. (NICU). To this day, I do NOT recall them being hooked up to ventilators but I’m told they were being “bagged,” and had the tubes in their throats already. All I remember seeing was those precious, itty-bitty faces with their button noses and eyes closed. They were so early that their eyes were still sealed shut. They did not open for another 11 days! They also had no eyebrows or eyelashes but they did have finger and toenails.

Ten days after their births, we had to say goodbye to J. He had had too many complications, and surgery had not been able to correct the one that would kill him. To end his suffering, we made the decision to remove him from life support. I held him while he passed.

The girls stayed in the hospital for 4 and 5 months. They came home that summer medically fragile and with no guarantees that they would develop “normally.” A had have a brain bleed-level 2 while in her early days there. It had resolved completely, but that did not mean that it had not damaged any parts of her brain. She had also died in my arms one day when her CPAP tube clogged up. The Doctor and nurse resuscitated her in my lap. We spent the next 3-4 years in many therapies: physical, occupational, and speech. R had laser surgery on her eyes while in the NICU.  She developed ROP, a common eye disease in preemies that can cause blindness. She is nearsighted and has worn glasses since her first birthday. A had a speech delay and refused to speak. She only wanted to use sign until she turned 3. Today, the child will NOT shut up! She even talks in her sleep!

So, when A’s sister, two brothers and I walked her to her kindergarten room, she ran in yelling ” Miss Hartrine! (She says her teacher’s name backwards!), where do I put my backpack?!” and left me with hardly a backwards glance or a goodbye.  I wanted to cry…  But I had one more tiny baby to deliver….. 🙂 She, too, walked proudly into her new kindergarten room, quickly found her new nametag and hung up her backpack on her hook while her siblings peeked around, then brushed me off just as quickly, to join her new friends. 🙂 The boys and I left. My almost 4-year-old asking,” Mommy, where’s MY new classroom?” THAT IS when I almost bawled!!

Today, again, I watched those tiny pigtails and strong little legs carrying the HUGE backpacks walk into school all by themselves because “We are big girls, Mommy.” I did not cry outwardly remembering the Doctor’s words, and thanking God for how wrong the predictions were!

Sweet Baby Boy   By Korrie Anne Everett

My “chubby delicious”

lavender scented baby.

Your eyes turn to almonds

when you smile your gummy smile at me.

I love waking to your babbles and hiccups;

seeing your fat, soft arms and starfish hands

reaching up for me.

You are the whole world to me,

and I, to you.

Your innocence

never to be lost.

One extraneous bit of DNA

was all it took

to render you

forever my baby.

Heavensent    By Korrie Anne Everett 

Little blonde-haired boy

pouting beneath the rose bush.

Looking so sad And so much

like your brother before you.

 I fold you into my arms

and you mold yourself to me,

The relief of my affection

loosening your limbs.

Your soul starved

for my love,

my magical middle son.



By AmySue Vogel

You asked me what the world should know about my child.

You asked me what he is to me.

You asked why he is special.

You asked me who he is.

I have one thought – one single notion

He is charmed.

My son is real magic.

His force is wild.                                                                                      

His effect is delightful.

His spirit is loud and it is bright.

He is filled with captivating wizardry.

And this –

can make you laugh from the bottom of your belly.

Look at my child.

Let him cast his spell.

His are eyes filled with alluring power.

One wave if his magic wand and you are entranced.

You just have to look to see the enchantment.

You just have to glance to see the laughter.

You just have to peek to see the tricks up his sleeve.

You just have to gaze to see the stars shine.

You just have to watch –

and you are bewitched.

Unless you come close –

You cannot know his magic.

You cannot experience his enchantment.

You cannot laugh at his tricks.

You cannot see his stars.

You cannot feel the sprinkle of faerie dust.

The world should look a little closer – a little deeper.                                             

This is no illusion.

This is real magic.

This is Maverick.

Jordan’s Story (www.4jordan.org)

By Jason and Sherri Hubbard

When my wife and I were approached to be part of this special project, we were first humbled and then apprehensive.  We were humbled because our lives, while unique to some, are just that, our lives.  As any parent realizes, you just do what needs to be done. Life will throw you a number of curves but as you look back on your journey, you see that through the grace of God, somehow you just got by.  So humility is what we have as we share in this endeavor.

We are apprehensive because of the magnitude of this effort.  It is our desire to do a good job.  As you read these stories, you will find parents that openly discuss their fears, joys, concerns and desires about raising or having raised a special needs child.  So for us, the best approach is one where we are sincere in our delivery.

Our son Jordan died at the age of three from complications related to a rare disorder called Spinocerbellar Ataxia (SCA), commonly referred to as ‘Ataxia’.  Jordan began life as a healthy child but it was around his 18th month that we noticed a change.  Jordan began to display symptoms of SCA type 7.  For his last 18-20 months, my wife and I became the parents of a special needs child.  At that moment, we joined a fellowship of parents who have many things in common. 

We had dreams, concerns, moments of joy and sadness; many of the same emotions that parents of healthy children have but for us, these emotions were tempered with a reality that life would be different.  Different in terms of society’s view and different because life is so much richer when you are the parent of a special needs child.

My wife and I remember the times when we would openly take Jordan outside with his adaptive equipment, fully embracing what life offered him.  We were so appreciative of other parents that came over and talked to us as opposed to simply standing by wondering.   It gave us the opportunity to educate others and it reinforced our belief in the kindheartedness of others.  We understood that it was awkward for people to come up and ask questions and more often than not, we simply got stares from the many onlookers.

The richness of life comes by realizing all that it offers; taking time to find and smell the roses.  In many regards this is a simple coping mechanism.  In an effort to maintain sanity, you search for these golden nuggets. When Jordan lost his eyesight, (a by product of SCA type 7) music became a dominant medium to stimulate his senses.  As a family, we sat around listening to his favorite songs, having fun and creating the memories that will last a lifetime.  As a person that enjoys music, I appreciated that opportunity and more importantly, Jordan loved it. 

In the following stories, you will find that parents of special needs kids are no different from those of healthy kids.  They all want the same for their children – to be happy, healthy, and accepted.  It is our hope that you continue reading with an open mind and a receptive spirit as you glimpse into life through the eyes of a special needs parent.  Hopefully, at the conclusion, you will realize that while the definition of life may differ; many of the hopes, desires and wishes are the same as those for healthy children and their parents.

Thank you for your time and support.