A Magical Milestone
August 5, 1999
Dear Friends,
My heart is practically bursting tonight. Two beautiful, happy posts about
two children doing well makes my heart feel light. On top of that, my own
sons' birthdays are right around the corner--and I feel especially moved by
what is about to come.
When my son, Alexander, was diagnosed with HLHS, I wondered if this time
would come for us. Alexander was born in 1994 and even though that may not
seem like such a long time ago, for a child born with a congenital heart
defect it is.
When Alexander was diagnosed he was already in congestive heart failure. The
odds that he would survive his Norwood were not good. I remember the surgeon
giving him a 20% chance to survive. My father, who was in the same meeting,
remembered the surgeon giving him a 5% chance to make it. Neither odds are
very good. Certainly not the odds a parent wants to hear two days before
their child's chest is to be opened up.
The one sentence that the surgeon said that still echoes in my head was said
after my parents asked the doctor about Alexander's quality of life. Of
course the doctor was unwilling to make any guarantees, but he did say,
"Only 25% of the children who make it through the first surgery make it to
age five, but it seems like the children who make it to five seem to do well
after that."
While Alexander was in the operating room having his Norwood, my family and I
were in the waiting room planning his five-year-old birthday party. We knew
that Alexander's fifth birthday would be a magical day. We were smart enough
to know that Alexander's heart would not be magically fixed on his fifth
birthday, but we knew that reaching that age would be a magical milestone for
him.
Alexander's birthday is August 11th. I am so happy to say that he will be
five years old on that day. And like the two other posts I read today, I
have good news to share. Alexander's heart is functioning well. His
activity level is good, his color is good and his quality of life is like
that of any other child his age.
Our time is a magical time right now. He's still small enough to let me
cuddle and sing to him, but big enough that he can put his own shoes on.
He's young enough to let me kiss him in public without embarrassment and old
enough to be able to express his own feelings to me. He's young enough to
give a piggyback ride to, but old enough to know I can't carry him that far!
He's young enough to let me kiss his owies to make them better, but he's old
enough now that the owies are not made by a surgeon's knife. We are four
years post-Fontan. Life is good.
As this magical milestone approaches I had to write and share my happiness
with all of you. So many times I wondered if this time would ever come. For
the longest time the oldest heart child I knew was only two years old. I
wondered what an older heart child looked like. I wondered how older heart
children felt. I wished so badly to meet a healthy five year old heart
child, to know that he did exist and that he didn't suffer or live in pain
and anguish. I wanted to know that older heart children didn't hate their
parents for putting them through surgeries. I wanted to know that my own
heart child would grow up and give me the answers to those questions.
My prayers have been granted. Alexander is my proof that miracles do occur.
He helps me believe in magic and miracles. Many people mark a child's fifth
birthday as important because they start school. Alexander's fifth birthday
is a magical milestone--not because of school, but because of Life.
I hope all of your children enjoy their magical milestones, too. Thanks to
all for sharing such happy posts. :-)
Sincerely,
Anna
mom to Joey (HH; 8th birthday on 8/14) and Alex (HLHS; 5th birthday on 8/11)
Baby Hearts Press
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