Future Uncertain-Crystal Ball, Please!
April 7, 1999
Dear Heart Friends,
I have been keeping up with all the procedures our heart children
have been going through and revelling in their successes. It has been a joy
to see so many children making it through so many different procedures.
But I have also been in touch with some friends whose heart children
are not doing so well. And I felt compelled to write a note to all of you.
On Easter I was given a few minutes during the adult education class
and then during the service to talk about organ and tissue donation week
(thanks again, Kim!) Any time I speak publicly about Alexander I am once
again reminded of how far he has come and how far we have to go. But, worse
than that, I am forced to admit that I don't have a clue about Alexander's
future. During my speech about organ donation I had to admit that a heart
transplant could be in Alex's future. It's tough to come out of denial for a
while and publicly admit that.
Recently two of my friends have had to face issues with their heart
children. Both of these friends have enjoyed many healthy years with their
children -- years free from surgery, free from procedures (except routine
ultrasounds and X-rays) and free from the daily worry that comes from living
between surgeries. Now these friends are back to the daily routine of
wondering what each day will bring. It's a horrible way to live--something I
wouldn't wish on my worst enemy.
I wrote a post before moving to Florida about my last visit with my
son's PC--I was very disappointed with the way things had gone. At that time
I told you how I hated it when the doctors would say that they couldn't
really give a prognosis for Alex's future because they didn't have a crystal
ball. Well, I don't have one either--and I really wish I did!
These problems my friends' children are experiencing have taken me
back to where we were when Alex was first diagnosed. My friend today said
she felt that her son was a "timebomb" and she was so afraid he would die of
Sudden Death (an arrhythmia which ends in death) and she so desperately
wanted the doctors to do something BEFORE that happened. That brought back a
feeling of dread to my heart and a remembrance of the doctors talking to me
at the hospital after Alex was diagnosed with HLHS.
Our conference was in a classroom where diagrams of Alex's heart and
a normal heart were drawn on the board and words were said that I could
hardly hear for the fear in my heart and the strong urgency I felt to be with
Alex. We were told that the Norwood was Alex's only hope. He was too sick
to wait for a transplant. Our choices were compassionate care or the
Norwood. After we quickly chose the Norwood we were given more bad news: he
might or might not survive that operation, but then there were more to come.
And these doctors could not guarantee that Alex would make it through them
either. And as if the surgeries were not enough to worry about, the shunt
used to keep Alex alive (the B-T shunt) was very tiny and if it got a clot in
it, even if Alex were in the hospital and on a table in front of the surgeon,
he could not open Alex up fast enough to save him. In other words--Alex
could die even if he survived the surgery, even if he seemed to be doing fine
(this was the first time I heard "a walking timebomb" used with regard to my
son). And I have seen how those words have rung true, when dear friends of
mine have lost their babies after the Norwood. Every time it happens, the
words of the surgeon and PC echo in my head. And I cry for those mothers
because it very well could have been my baby.
Recently I have been feeling on top of the world. Alex is almost
four years post-op the fenestrated Fontan and doing great! He looks and acts
like any other healthy four year old. He is bright, funny and endearing.
And although a mother never truly "forgets" about her child's heart defect, I
can honestly say that I don't awaken and fall asleep at night with that
feeling of dread and fear on my heart that I did so many months ago. We have
been given a reprieve and I am so thankful for it. Life has been good.
Yesterday and the day before, we had company (another heart family--with a 12
year old girl with pulmonary atresia, hypoplastic right ventricle and ASD,
who is doing great, too!) and we spent the better part of our two days
together at the beach. It was so delightful to watch these two heart
children running around with their siblings, screeching as the cold water
touched their bodies, building drip castles and getting buried in the sand.
It did my heart good to see these two special kids acting like any other
normal kids. This is the picture I prayed for when I was wondering what kind
of life Alex was in store for after we found out he had a severe, congenital
defect.
What a bittersweet time for me! Here I am thrilling at the sight of
these two "normal" children even while my heart is aching for the friends who
I know are struggling everyday to bear the burden of uncertainty with regard
to their children's future.
I have a plea for all of you--please live each day to the fullest. Today may
be wonderful! Enjoy it. Savor it. Remember it. Tomorrow may be full of
uncertainty and concern, but that goes with the territory when you are the
parent of a heart child. And all our children's futures are uncertain
anyway--as are any person's for that matter.
Just the other day Joey was telling me what he would do if he found a
magic lamp with a genie inside willing to grant him three wishes. I would
wish for a crystal ball so that I could see into the future--but only if I
also had the power to change it if the picture was not as I would like! Or
maybe that would be a foolish wish and a better wish would be to have what I
pray for all the time--the strength to deal with whatever happens. Maybe
it's better not knowing too much because then we can live life like a
"normal" person for a while. Maybe it gives us the chance to give our
children what all children need--time to be kids, time to be loved, time to
just goof off if they want to. We might feel compelled to pack unnecessary
things in our days if we knew exactly how much time we had--when the things
we tend to remember most are the little things like snuggling up with a book
on our mother's lap, playing 'I Spy' in the car during a long (or short!) car
trip, singing songs and dancing to the radio, the smell of freshly-baked
cookies, the feeling of the sea breeze on our skin during a day at the beach.
Take time, my friends, to enjoy today. Treasure the little things,
but set goals for the future. Please remember to pray for all the children
everywhere who face daily lives of uncertainty and remember to pray for
strength for the families and friends who love those dear children. I will
be praying for you all.
Peace and joy,
Anna Jaworski
mom to Joey (7) and Alex (4; HLHS)
check out my new website!
www.babyheartspress.com
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