“D”-Day, Diagnosis Day

I remember the doctor’s specific words…  “the results will be back in 3-6 weeks, but with the holidays it could take longer.”  He also told me to call the office as often as I felt I needed to see if the test results were in, because it is easy to lose sight of them among the hundreds of papers on his desk.  He also said to do our best not to research things on the internet, it would only give us worse case scenarios.  How could it get any worse than this? NEVER EVER EVER ask that question…  NEVER.

It was December 17, 2014.  Just days before Christmas and a few weeks before our son’s first birthday.  Three weeks fell on New Year’s Eve, 4 weeks fell the day before his first birthday.  Oh what a joy the holiday season would bring this year…

Leaving the hospital that day was a haze, but the car ride home I remember vividly.  We agreed that in our hearts the test results would come back positive, but a small part of both of us prayed they were negative.  Our main concern was his heart…  screw the words Williams Syndrome, special needs, different, non-typical, etc…  I wanted my son to have a NORMAL heart!  I remember praying and asking God to please let him live to be two because I needed him to celebrate his first birthday and his second…  I needed more than that but I was trying to barter.  Who barters with God?

The next few weeks were filled with questions by our family including the question “should we cancel Christmas?”  I was almost offended by the question but quickly reminded myself they were only trying to do what was best for us or what they thought we needed.  But honestly I needed Christmas more than ever.  I needed NORMALCY.  So, I wrote my side of the family a letter to give the on the day we celebrated Christmas.  I asked them for 3 things:

1. Please do not treat us or him any differently.  He is the same kid he was a few weeks ago, a few months ago, and the same kid he was the day he was born.
2. Love us through all of this, because there are going to be times we just need you to be there.  No words, maybe a hug or just your presence.
3. Pray us through it, because we are going to need it.  We are going to need faith more than ever.

There was more to the letter but the listed 3 things were the most important.  I remember reading the letter aloud to them and also quoting a bible verse that had been passed on to me by family friend.  “Trust in the Lord with ALL of your heart, rely not on what you think you know, remember Him in EVERYTHING you do, and He will show you the way” -Proverbs 3:5-7

My letter was followed by a long silence until I decided to break the sniffles with cracking open a few beers, handing them out, and toasting the family into Christmas.  Again…  I needed to get back to NORMAL.

I called the cardiology office exactly 3 weeks and one day past the 3 week mark.  I knew in my bones the results were there and I needed 100% confirmation.  I needed to prepare for what was to come.  I needed to be in control, in control of something…  anything.  I needed to CONTROL SOMETHING!!!!

The nurse told me there were no results.  She didn’t even ask my name or my son’s name.  How could SHE know there were no results?  Was she psychic?  Was she omnipotent?  My response to her, as closely as I can remember, went a little something like this…  “I know you are busy and it is the day after New Years, heck you may be tired from all of the holiday fun you had with your family BUT, when I call back tomorrow and ask specifically for YOU would YOU please at least ask my name or my son’s name?  Would YOU at least put me on hold so YOU can pretend to care and check to see if his results are in?  Because I honestly plan to call daily and ask for YOU until YOU tell me the results are in and put me on hold to speak to the cardiologist for details.”  The phone went silent to the point I had to ask if she were still there and of course she started back peddling and apologizing…  The only thing I heard sounded like Charlie Brown’s teacher, “wah wah woh wah wah….” I politely stopped her and gave her my name so a return call could be made if need be.

Guess what!?  The cardiologist called an hour later confirming everything we already felt in our bones.  The test was 100% positive for Williams Syndrome, he had a slight narrowing in one of the main areas of his heart, he was going to need life long therapy and his heart would need to be monitored frequently because eventually intervention would have to happen for him to survive.  Again…  I heard Charlie Brown’s teacher…

By the time I hung up the phone, we had a follow-up appointment, a list of things I needed to get started on, and a timeline of doctor’s appointments, referrals, etc.  I had in my hands a piece of paper that helped me regain control.  Whatever that is…   Of course I sat in my car feeling paralyzed unable to move, unable to think because the only words resonating were “heart intervention to survive”.

More to come…