Her blog is beautiful. Her family is beautiful. And the light radiating from within her is beautiful. Please join me in welcoming Heidi to our Sunday interview group!
Tell me a little about yourself and your family.
My name is Heidi. I am wife to my college sweetheart and have a
background in science. I quit my job to become a stay at home mom to
two boys. My oldest is an energetic preschooler, the Certain Little
Boy; and my baby has the screenname Blue on my blog. We live in
Pennsylvania.
Tell me more about Blue’s disabilities. Did you know when he was
born that he had disabilities.
When I was ~12 weeks pregnant with my second child, I found out that
he had significant bilateral arm differences. I had a quad screen
test which used ultrasound to make some measurements and the
technician noted the differences. The final test result showed a
high probability of either Trisomy 18 or Trisomy 21. However, genetic
testing showed a normal karyotype and ruled out both syndromes.
Later, high-level ultrasounds fully characterized the arm anomalies
and noted several other details while a fetal echocardiogram showed a
normal heart.
We were given several possible diagnoses, but none of them added up
when we extensively researched them. One night, just a few weeks
after we got the shocking news about the arm differences, my husband
found some pictures on the internet of kids with Cornelia de Lange
Syndrome (CdLS). He said, “Heidi, you’ve got to come look at
these cute kids!”
At birth, the doctors quickly noted Blue’s full head of hair and his
curly, long eyelashes. In that instant, we knew Blue had CdLS.
Within 24 hours, the diagnosis was confirmed by geneticists.
How did you go about making the decision to blog about your
children? What do you personally get out of blogging about them and
their issues?
I had been blogging for about a year when I found out about Blue’s
arm anomalies. I was quite shocked and unable to talk about it with
anyone without breaking into tears. Because I had known that the
blogging community is fantastically supportive, it was natural for me
to have this outlet and blog about my pregnancy, my baby’s
hospitalization and now his current challenges and successes.
Writing can be very therapeudic for me. It challenges me to really
think things through, which is the reason I started blogging in the
first place.
What is a typical day like for you and your family?
Our weekdays revolve around getting my husband off to work and
getting the Certain Little Boy ready for preschool and then turning
around to pick him up. We need to keep Blue’s feeding and
medication schedule and keep up with his numerous therapies and
medical appointments. On top of that, our cat is diabetic and has a
strict schedule of his own! I normally can get the housework
“done” during the day but I always do the shopping at night after
the boys are in bed. We LOVE weekends!
How have your child’s disabilities affected you as a person and as a
mother? What did you do right?
The simple answer is YES, in good ways that I can’t fully explain
yet.
One thing we did right is to involve the Certain Little Boy in
frequent visits with Blue during his long hospitalization. Sure, it
was hard for him to behave, but all in all, he loved the hospital
(and made friends with several of the cafeteria staff!) and loved his
brother and was more than ready for him to be home when that time came!
What do you want other parents to know?
I hope that other people know that they would be a good parent to a
special needs child too. The qualifications are the same as parenting
any child. Love your child and find the best possible medical and
therapeudic help that they need. All children are special and
deserving.
Make sure to visit Heidi at her blog, God’s Grace In Practice!
Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.