Blessed with Anthony: Getting Better

Tuesday, October 26, 2010

Getting Better

In the last post I stated there would be bumps in the road with putting Anthony in our neighborhood school and boy have there been some bumps!

Moving Anthony to a new school has been exciting and hard all at the same time. The first week of school was spent getting Anthony comfortable in his new school and helping him with the fears he had with being in a new school with all new friends and staff. Anthony cannot articulate his fears, instead he will try to escape a situation that is stressful and a new school was very stressful, so we saw many attempts of escapes. Once we got past the first week we started to see less behaviors and Anthony feeling comfortable with his new environment.

Today Anthony is having much better days, he is still having some rough days, but those days are becoming less. Anthony is coming home very happy and willing to talk about his day at school, which is a great improvement from last year and he is getting to be with his peers. The first time I heard one of Anthony's peers yelling his name "Hi Anthony!" from across the parking lot I wanted to run to that child and hug him! Since that day I have heard other children calling to Anthony and every time I hear his peers call to him I can't help but smile and celebrate what we are working towards......Inclusion = Included.

On the days that a rough days for Anthony, I try to figure what happened that may have contributed to his rough day, but focus on those great days. I know if we keep at it there will be a day we will look back and remember when we first started this journey. So, for now I will keep trying to find what works and what doesn't, it means we may have to rearrange, but that's what we must do to help Anthony reach his potential.

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The start of our journey

Our family was blessed to have seven beautiful, healthy
daughters. So our excitement was beyond the norm when we
were told through ultrasound that our 8th child would be a boy!Wow a boy! As a mom I was very excited about forming that special mother and son bond, the kind of bond my husband Don was forming with our daughters. April 25, 2003: life changed more for our family then we could have ever expected. Our son Anthony entered the world 4 weeks early weighing 6lbs, 18 inches. He was perfect in every way possible, stealing the hearts of his adoring sisters who couldn’t wait to get him home to join our family.
The first evening home turned bittersweet. It occurred to me that Anthony had not wet a diaper, he had no desire to nurse, he was sleepier than normal, and his legs were cold with a slight blue tone to them. We returned to Sacred Heart Children’s hospital where an echocardiogram was done, which showed us that Anthony’s aorta was closing and only open heart surgery would save his life! On April 29, at only 4 days
old, I said good-bye to my little boy as he was taken into surgery. The wait was grueling, five hours later Don & I were reunited with our son. The doctors were very guarded as they explained to us that Anthony was not out of the woods, the next 24 hours would tell. But when I saw pink toes and touched those warm toes, I knew he would be fine.
Seven days later he was fine; he was so fine that we were being moved from ICU to regular pediatric. But before we moved our doctor came into the room to tell us our son’s blood tests showed that Anthony had Downsyndrome. Down syndrome is the most common occurring genetic disorder in America. Approximately 1 in 750 babies are born with this disorder.Like most parents of a child born with a disability, Don and I dealt with grief and fear. What would the future hold for Anthony? What level of impairment would he have? Would I have those special mother and son moments? Would I be able to dance with my son at his wedding? Will my son grow to be a strong man?

The Creed of Babies with Down Syndrome

My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace

Rare Blue Lobsters

Daughter's a rarity to treasure
By David Falcone Boston Herald
Saturday, August 6, 2005

Couple of interesting items in the news the past few days that might have slipped under the radar but are worth further review.Both rarities for sure: blue lobsters and Billy Mueller.The blue lobster - one in 2 million - results from a genetic anomaly. An extra protein creates the cerulean hue. Like a golfer's hole in one, a blue lobster is cherished by any fisherman lucky enough to pull one out of the sea. A prince among lobsters, if you will, and often thrown back out of reverence.And Billy Mueller, the soft-spoken third basemen for the Red Sox. He works hard and produces and then goes home to his family and forgets he's a baseball player. He never complains. He does not seek attention by growing his hair too long or asking out of a game because he's having a bad day. He brings honor to a gathering of fools. What are the odds of that?And so I dream of what I will tell my 2-year-old daughter one day. How special she is. How rare - one in 1,000. An extra chromosome making three where there is usually a pair. A total of 47 in a cell where there are usually 46. An extra chromosome of perfectly good genetic material. An extra bit of life entwined on a helix that continues to mystify us all.How will I tell her that babies with Down syndrome every day are determined by doctors and mothers and fathers to be a ``mistake,'' a ``burden,'' a malevolence that must be eliminated.In fact, the American Journal of Obstetrics and Gynecology tells us that many pregnant women receive only negative information from doctors when a prenatal screening indicates the possibility of Down syndrome. Other studies show that the abortion rate of babies with Down syndrome is as high as 90 percent after such screenings. More babies with Down syndrome are being aborted than are being born.Out of ignorance we are killing angels. The knowing and loving gaze of these children with beautiful almond-shaped eyes is seen less and less because they will not see the light of day.That's why I sit with my daughter and watch baseball. Happy that she's alive and learning the greatest game ever invented, a perfectly beautiful game, with all its mistaken measurements and odd configurations, played by rare individuals.I read her books and teach her colors, such as blue, for instance. The sky is blue and the sea reflects its hope and promise. And beneath the sea's dappled reflections, an occasional rare creature that is a symbol of wonder and beauty we preserve rather than destroy.What will I tell my daughter when she is old enough to understand?I will tell her about blue lobsters and Billy Mueller.Just my thought. Our kids are fine it is the perception of them that is the problem.

Blessed with Anthony

Tuesday, October 26, 2010

Getting Better

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The start of our journey

Anthony

The Creed of Babies with Down Syndrome

Followers

Rare Blue Lobsters

Watch the video to see Helen's interview

One of Helen's favorite Down syndrome awareness videos

Waiting on the world to change!