Blessed with Anthony: Too long between posts

Tuesday, April 14, 2009

Too long between posts

Wow, time sure does fly! I can't believe it has been 9 days since my last post! During the last nine days we have been busy.

Anthony, Don & I attend a meeting for the Little league that Anthony will be playing with. Anthony is so excited! He sat through the meeting like a little man and when we were done Anthony made his way around the room to greet the other children there. He went up to a boy in an electric wheelchair to say "Hi" and gave the boy a hug. The mom of the boy was very touched and I as Anthony's mom was very touched as well as proud of my little man. What a good reminder to me how much a little hug can bring to others as well as ourselves.

For Easter our family was able to make the 7 hour drive to be with our oldest daughter at college. We had the greatest time together. We spent Saturday at a park hunting eggs, playing on bouncy toys, including a wall climber, faces were painted and hot dogs were eaten (yuck). When we weren't out running around we were at the hotel playing in the pool and had a great time! We had Easter services at Kiersten's church and from there we were able to have dinner with Kiersten's roommate's family. Both families had a wonderful time and I was very happy to meet this family who are very kind to Kiersten. Monday morning came all too fast and it was time to say good-bye to our Kiersten, but we know she will be home next month for all summer.

Anthony returned to school today and I guess he was a little "spicy". He really likes to test the limits and push as far as he can till he is reminded that his teacher has limits in place just like we have at home. Hmm..... I bet he will do better tomorrow.

As soon as I get the moment I will post pictures of our family that were taken over the weekend. Happy Easter form all of us!

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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, April 14, 2009

Too long between posts

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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!