Meeting "Old" Friends for the First Time
November 3, 1998
Dear Parents and Friends of the Heart,
First of all, let me say "Thank You!" for the wonderful re-introductions
and introductions! It's so great to catch up on all of our great kids and
see how everyone is doing. Of course, the best way to catch up with each
other is to meet in person which leads me to why I'm writing tonight....
For the last two years I have been online meeting many terrific parents.
We have shared triumphs and tragedies, concerns and joys, fears and hopes.
We've watched each others' children and our own grow up, lose teeth, learn
karate or gymnastics, get glasses or PE tubes, struggle with weight gain and
grow taller. We are more than acquaintances - we are friends of the heart.
Some of us correspond with each other more than we do our own family
members. We certainly understand each other better than most of our friends
or relatives could ever hope to. And so when we write to each other, the
words are taken to heart. The encouraging words are repeated over and over
in hospital waiting rooms while email messages are passed from one parent to
the next. Sometimes we call each other and then have a voice to match to the
written words. But without a doubt, the best time is had when we meet face
to face.
This last week I had the priviledge of meeting Carol and Bill
(SelfC@aol.com) and their grandson, Ben who has HLHS and was operated on by
Dr. Norwood. I met Jeanne and Ron (MattcoInc@aol.com) and their son, Matt,
who has been an inspiration to many of us on the list. I met Linda and
Robert (Leftheart@aol.com) and their darling sons Michael (HLHS) and Bryan.
I met Steve and Pegi (SM838@aol.com) and their adorable children, William
(HRHS). To finally meet them was an incredible experience.
I also had a chance to meet an ACHDer, Laura (Bleepb@aol.com) who has a
left-sided heart defect. Even though I had never talked with Laura before,
we hit it off right away, and so did our boys! Alex and Jed were both dragon
slayers for Halloween and they had so much fun together in their costumes.
There have been some regional meetings conducted in different parts of
the country (PA, TX, FL, CT) and all of the parents I've spoken with who take
the time to attend are so happy they did. It is so neat to meet others who
have traveled down the same road and who know the fears we know. It's great
to meet others who rejoice in our children's triumphs, no matter how small
they may be to another parent.
A while back I was asked to be a guest speaker at a support group meeting
and I wrote a poem especially for that occasion. I won't write out the whole
thing here (because it's long - of course!) but I thought I'd just share a
few stanzas...
What It Means to Be the Parent of a Child with a Heart Defect
What does it mean to be the parent of a child with a heart defect?
It means going into your baby's room a dozen times a night just to check and
see if he is breathing;
It means standing over the crib and watching for the chest to rise and fall
and when you don't see it move you begin to panic and put your head down
close to the baby's face to try to hear him breathe;
It means that when you don't see the chest move and you don't hear the
breathing (because your own heart's beating is drowning out any other sound
in the room) you put your finger under the baby's nose to feel the warm air
on your finger - until you wake the baby and he stirs - and you're thankful
that he's still with you
What does it mean to be the parent of a child with a heart defect?
It means waking up with a start every morning, jumping out of bed and running
to your baby's room wondering why he isn't up crying yet;
It means feeling a huge sense of relief when he hears you and opens his eyes
and smiles;
It means saying a prayer of thanks for another day
What does it mean to be the parent of a child with a heart defect?
It means checking his nailbeds against your own to determine how blue he is
today;
It means asking your husband, your mother, your sister, "Do his lips look
blue to you?"
It means snuggling him in an extra blanket for fear he won't be warm enough
What does it mean to be the parent of a child with a heart defect?
It means knowing that everyday is a blessing and a gift;
It means knowing that you are the luckiest person in the world just to be a
parent;
It means cherishing every moment, every breath with such an intensity that
you feel tears come to your eyes for no apparent reason
What does it mean to be the parent of a child with a heart defect?
It means your own heart knows a pain no parent should know;
It means feeling weak and helpless and angry and depressed because your
child's fate is out of your hands;
It means feeling strong and determined and brave because you know you have to
be
So what does all of this mean?
It means we are all united by the same feelings;
It means that we all know the mixed-up emotions of living with death - but
more importantly of living with Life;
It means that even though we are strangers we are more to each other than
friends could ever be.
by Anna Jaworski
(from Hypoplastic Left Heart Syndrome: A Handbook for Parents)
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