We had a very interesting visit with our Perinatologist last
week. We really like her and she is the same doctor that gave us Miles’s Spina
Bifida diagnosis. This conversation was obviously different and we mostly
talked about how shocking it is that it’s all happening a second time. She said
our chances were less than 5% that it would happen again. She said she spoke
with some Geneticists she knows and they were all very surprised about our
family with 3 cases so close in a family. She recommended we look into some
studies and contribute our genes into research.
“How can I have a healthy child? I’ve always wanted to have
a girl.” I asked her.
“Keep having children! This won’t happen every time.” We
liked her answer. “I can’t wait for you to come back to me next time when you
are pregnant with your daughter.”
She commented that she had never seen a family so positive
and light hearted.
After that meeting, one of her comments kept coming back to
me. She said usually gets the hardest and most complicated cases. I imagine she
sees a lot. We felt inclined to send her the following letter.
"Dr. Kuhlman,
Bryce and I wanted to thank you for the way you handled our
diagnoses of Miles and Caleb. I know you must give hard news often and it is
very emotionally taxing for you. We felt like you are truly walking through it
with us, without making it seem too good or too bad. We also appreciate that
you told us to have more children. We have always wanted a lot of kids and this
has made it discouraging. Many medical professionals think we are crazy for
wanting more children, and maybe we are, but we love our kids all the same.
I also felt inclined to mention something that crossed our
hearts after our last visit. You had said that you often get the toughest
scenarios; the hardest ones to diagnose. I imagine you see parents in their
darkest points, making the hardest decision of their lives. We know that
feeling very well, times two. One thing we gained after learning of Miles’s
disability while pregnant, was that those horrible feelings of despair,
hopelessness and depression all go away. Feelings are fleeting and constantly
changing and it’s difficult to make a life altering choice in the midst of
sadness.
If there are parents faced with similar news as we have
gotten, we would love to offer to speak with them if they would like. We do not
want to influence their decisions or pass judgement, but simply be a listening
ear that knows exactly how it all feels, and also share our story. We have
gained a lifetime of wisdom in the last few years and the most important thing
we have learned is this: Just because life doesn’t turn out the way you
expected, doesn’t mean it’s not a good life. And just because the whole world
may not see your child’s life as worthy of living, doesn’t mean it’s not a
great life to live. We have been privileged to learn lessons that most never
get to learn and we have so much more joy because of Miles’s life, as we will
Caleb. We are the lucky ones.
Again, we don’t want to represent your opinions but it
helped me a lot to talk with other mothers that had heard the exact news that I
had. Also, my husband seems shy in our visits, but he is wise beyond his years.
I know that fathers have a whole different set of worries to consider and he
would be a great guy for another dad to talk to. He has still exceled in his
career, still goes golfing and still loves life. It won’t be as scary as one
might think.
If people aren’t interested in speaking to us, they can also
watch this video we had done when Miles was placed on hospice. It speaks into
how each of us were effected.
Here is another happy video of Miles.
Sincerely, Allison Lefebvre"
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