The Waiting

The Overview

The Day it All Changed

I've begun to refer to the period between our perinatology appointment on February 11th and our pediatric cardiology appointment on February 22nd as The Waiting Place.  And just like Dr. Seuss says, it is a most useless place.  Anxious, obsessive, fearful thoughts filled my brain for most of the days, and all of the nights. 

What if it's actually worse than we think it is?
What is there's a chromosomal problem on top of the heart defect?
Where should we go for treatment?
How can I keep Jenna's life in a semi-normal state while we deal with all of us?

What if I go into early labor?
What if our health insurance doesn't pay for all of this?
Who will take care of Jenna while we are in the hospital?
Will I be able to go back to work in the fall?
What if I can't nurse her?

I hate The Waiting Place. 

So what did we do to pass the days?  Well, that first weekend we didn't do a whole lot.  We sat around generally looking stunned and feeling numb, and keeping Jenna close.  She wanted to have a new friend over for a sleepover, so we let her do that.  It was a nice distraction.  We slowly began to tell our immediate family the devastating news - well, Steve did most of that.  I couldn't bring myself to talk to anyone about it, much less on the phone (I have a life-long hatred of the phone).  I took several hour long showers and did a lot of staring out the window. 

We did have a nice Valentines Day -- mostly due to Jenna.  She had slaved over 30 hand-made valentines for her classmates and teachers, and Steve had helped her make a valentines box to take to school for her party.  As I've mentioned before, Jenna is sort of boy crazy.  She has several "boyfriends" and would get all goofy eyed when she talked about making valentines for Carlos or Logan or Axel.  I know I shouldn't encourage it, but I can't help it.  She's just so darn cute when she talks about them!  Anyway, I made a nice dinner, J and I picked out some flowers for Steve and we watched our Jayhawks on TV later that night.

A couple of really nice things happened in The Waiting Place.  In the darkness of night during that first weekend, I managed to reach out to an online friend Kathy, whose daughter Molly was born and died of a series of rare congenital heart defects.  She was wonderfully supportive and sent me all kinds of good resources to check out when I felt ready.  (Thank you so much Kathy!)

The other thing that happened is something that has continued to happen since this first time, and I am finding quite amazing on many levels and in many ways.  Let me give a little back story first.

My mom worked in the disability field her whole professional life.  First as a parent educator and then as a researcher at several major universities.  Her research area was always parent support.  My mom had a deeply held belief that the best support for parents with children with special needs were not doctors, or specialists, or university professors, or other experts.  The best support for parents are other parents who also have walked that road, and can offer a very unique kind of support.  The kind that only other parents can offer.  Thus, for the last 15 years of her life, she worked tirelessly with a movement called Parent-to-Parent, a program in which parents of children with disabilities could share information and emotional support with other parents through a one-to-one match.  (More on P2P here, if you're interested - including a really nice piece of my mom's involvement).

My dear friend Cheryl was the first non-family member I told about our baby's diagnosis.  She was devastated for us, as she's been on this road with us for the last five years and was almost as excited about this baby as we were.  Cheryl's mom is a pre-school teacher in the big city.  When Cheryl told her mom about our baby's special heart, her mom happened to mention that there was a little girl in her class who had a big scar on her chest and had had multiple heart surgeries.  Cheryl got the mom's contact information for me, and thus initiated my first Parent-to-Parent support contact.  I called the mom that first week post-diagnosis and we spoke on the phone and exchanged several emails. Over and over again I would get on the computer and peek at the picture she sent me of her perfectly healthy 4 year-old daughter who had experienced 3 heart surgeries and was thriving. It was wonderful.  For the first time, I felt hopeful that we could and would get through this. 

My Parent-to-Parent support opportunities have continued to grow - as I've also discovered two local families who have children with very similar heart defects.  Amazingly, both families live in my neighborhood! 

So, all in all, I guess The Waiting Place wasn't totally useless, but I sure was glad to finally arrive at February 22nd -- our pediatric cardiology appointment at Childrens Mercy.