Mr. Elliot has an afghan of his own and he couldn't be happier!





You can see more of Elliot on his blog,
Elliot's Expeditions!Elliot's mom, Michelle, wrote up this essay to tell us all about her son. Enjoy!
“I double dare you.”Elliot’s primary neonatal intensive care unit nurse gave me a figurine: an
angel, arms extended to the open sky, entitled “Courage.” She gave it to me
knowing that I would not need it for long. For she knew what I had really
been given. What an insightful woman.
The figurine sits reverently in the living room (very politely hidden just a
bit behind a trinket or two). Not everyone can see it; it does not matter
that it isn’t seen by all. It is seen by me. I look at it on good days. I
look at it on bad days. I look at it almost every day. I took it with me to
a nearby children’s hospital to hold my hand while I held Elliot’s following
spinal surgery. And, it saw me through. I know; I could simply pray (and
yes; I do that as well). I could do many things to augment my strength. But
why? All I need is the figurine…the figurine AND, so much more notably, the
look in my child’s eyes: the look of valor. Elliot can face adversity;
Elliot can face danger and misfortune. And, because of him, I can face
anything. I can face the world with renewed confidence because I have been
sanctified as a mother who was chosen to raise an astonishing child with
Down syndrome.
I have not always been a strong person. I was strong on the outside. I would
say the right things; I would act the right way; I would put on an
especially credible facade. I had to. My profession dictated that.
The facade is gone. No more false pretense. I am strong, and really, I think
that I always have been. It just took a wee bit of something (and someone)
completely out of the ordinary to show me just how sturdy I really was. The
strength was hidden inside – somewhere deep inside of my moral fiber. And
now, it is positioned reverently in my smile. Reverently. Just like the
figurine. I see it when I look in the mirror. I don’t care if others see it
as I once cared. I know that it is there.
Elliot will achieve. Elliot will learn. Elliot will become what Elliot wants
to be. Elliot will teach. And…Elliot has taught. Elliot has taught me a
great deal about courage.
He is not strong because I am strong. I am strong because he is strong.
I can look people in the eye, and correct them, when they refer to Elliot as
a “Downs child.” I am his advocate. I will not allow him to be called
“retarded.” Elliot has given me the strength to question the true definition
of the stomach-turning word (sickening in the way that it is generally
used). Well, yes; he is a bit dawdling from a mental standpoint. But I am
sluggish from a mechanical standpoint. I’m the blonde who cannot change the
light bulb. So, am I “mechanically retarded?” Well, probably. No, most
certainly!
As a public relations professional, my words and my correspondence have
always been canned…politically correct, I suppose. No longer. I say what I
think without any fluff. I no longer experience trepidation when informing
clients that their statements are inappropriate, and I won’t represent
inaccuracies and positions based upon anything less than appropriate morals.
Elliot gave me the strength to stand up to the people who actually foot the
bills!
Upon Elliot’s arrival, my mind was in a state of pandemonium. “Tell me a
lie; tell me a sweet little lie,” I hummed to myself over…and over again
upon hearing the words on the telephone from the neonatologist across town.
So plainly, “I know he has Down syndrome.”
I pictured my second cousin who was never placed outside of a corner
bedroom: a boy who could not eat on his own, who wore diapers and never
uttered a word. This was my memory of a boy (and now a grown man) with Down
syndrome. I was once again a scared little girl…five years old, quaking
without words in my second cousin’s presence at holiday time.
I waited for the ambulance transfer, just so I could see him. My son waited
for me, across town. I looked at him. I wondered where my flawless child
was. Who was this diminutive creature, staring up at me with huge eyes and a
microscopic, 32-week, 4-pound body?
He had the courage to say, “It’s me, Mom.”
“Elliot James.”
“Who, in God’s name, are you to think that I am not just as perfect as my
sister?”
“I’m here; so look out world, here I come.”
And, he did.
He showed the NICU staff that he would be bound and determined not to stay
until his due date eight weeks away. Less than two weeks and he’d had
enough.
He nursed. My baby boy, two months premature, and diagnosed with Down
syndrome at birth, NURSED. He blew those neonatologists straight out of the
water. Elliot arrived home, safe and sound, a mere twelve days after his
arrival into what he considered to be one great world, a world that is not
ready for him to be strong. He alters those erroneous perceptions on a daily
basis.
Catholics that we are, we arranged for the hospital’s resident Priest to
baptize Elliot in what Elliot thought of as an infirmary…in all of its
sterility. Originally, the Priest agreed. But, as a few days passed, he
indicated that he found it unnecessary. The dear Priest knew better. And,
Elliot knew better. He must have told him (in not so many words) that he
preferred the church.
The time came and went. When my Elliot was just a few months old, I became
pregnant again, to my surprise. And, believe it or not, I was aghast with
the perinatologists’ wishes; the pediatric cardiologists’ wishes, and the
wishes of all of the other “specialists,” when every single one of them
insisted that I undergo an amniocentesis. My courage said, “No; positively,
absolutely not!”
I had done this; I was doing this; and I would not be bothered one ounce if
“this” happened again. I refused. I refused with more audacity than they
wanted to hear. I gave birth to another son. Elliot and his brother are
thirteen months and one day separated by age. Elliot’s brother is of the
typical chromosomal make-up, but really, so what. As I stated, it did not
matter and it continues to not matter. It would have mattered before. Before
the familiarity, I would have been a faint-hearted, little lion.
I recently told an associate of mine just how blessed I was to have a child
with Down syndrome. She laughed. She said, “No, he is blessed for he is
perfect and we should all aspire to be so perfect…a pure reflection of God,
in all of his grandeur…more powerful than you will ever imagine, Michelle.”
“Learn by example,” she said.
She hit the nail on the head.
It sounds so cliché to anyone who has a child with Down syndrome, but your
child (if you are blessed to give birth to one with the almighty extra
chromosome) will teach you courage – certainly not courage in the typical
sense, but courage that you never knew really existed.
Elliot shows me daily just how important it is to be strong. His gaze can
make the most insensitive people smile. He can sense when someone is
staring, and plainly, he smiles at everyone, with confidence…with courage. I
have a feeling that he always will. And now, I will too.
Elliot is a hero. He overcame severe thyroid disorder (a multitude of
antibodies that he inherited from me); he endured copious blood draws
without shedding a tear; he kicked the dickens out of the oxygen tank; he
faces his hydrocephalus head on (no pun intended) and he let the
neurosurgeon open up his spine and now crawls with flying colors. I know; he
is not a school-aged child; he is far from adolescence. He is not even
three. In the mere two and a half years that he has graced the earth with
his fortitude, my child has taught me more about bravery and stamina than he
will ever know (but maybe, just maybe…he does know). Just imagine. Elliot’s
whole life is ahead of him. And now, so is mine, full of more spirit than I
ever thought possible.
And, as for the figurine, I may just put it away. I see it in the reflection
of Elliot’s eyes.
P.S. The meaning of Elliot’s full name, unknown to me at the time he was so
named, follows:
(Elliot – “The Lord Is My God”)
(James – “Strong, romantic, willing and smart”)