I spent some time today cleaning out the HUGE stack (seriously… it was pretty bad) of papers on my desk that needed to be filed. It was a little bittersweet because a lot of the bills, documents and papers from Morgan’s hospital journey were in this stack… along with everything else that you would need to file away in a home office (about 2 years worth!!).
I stumbled across a great little story written by Emily Perl Kingsley that was given to me by one of the patient services representatives at Levine Children’s Hospital while we were waiting for surgery. It is called “Welcome to Holland”. She wrote a pretty awesome little story that really captures having a special needs child:
WELCOME TO HOLLAND
by: Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this….
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plan lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills…and Holland has tulips. Holland even has Rembrandt.
But everyone you know is busy coming and going from Italy… and they’re all braggin about what a wonderful time they had there. And for the rest of your life, you will say “yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…in Holland.
The above is an awesome little story to reflect on what it feels like when you find out that your child is special needs. Morgan had not only a heart defect, but she was diagnosed with Chromosome 22 deletion (DiGeorge Syndrome). The spectrum of this syndrome is so huge that it could have meant that the only “issue” caused was her heart defect. OR it could have meant major developmental issues over time could occur. Only time would have told us what we had in store. But we loved her so very much no matter what her special needs were. She was, and is still, our sweet precious Morgan Avery. We miss her incredibly – and want her to be here so bad. But we are only left with the blessings of her memory which we will cherish always.
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A Precious Gift from God…
Our beautiful little girl, Morgan Avery, was born on July 12, 2014 with a Congenital Heart Defect (CHD) that was undiagnosed before birth. Her defect is Truncus Arteriosis, caused by DiGeorge Syndrome.
Truncus Arteriosis is a rare heart defect that occurs in an estimated 1 out of every 13,000 births. Morgan was diagnosed within hours of being born and was airlifted to Levine's Children's Hospital in Charlotte, NC where one of the best pediatric cardiology teams in the country performed open heart surgery on her at a mere 4 days old.
On October 9th, 2014, Morgan went home to be with Jesus. She passed from Sudden Cardiac Arrest due to an Arrhythmia. It was unexpected and shocking.
Morgan is our 4th child and we truly believe God has blessed us with a special baby and he is trusting us to carry out her purpose in this world. In the wake of her death, we have been inspired to share our journey of mourning through this blog. We are also compelled and motivated to spread awareness of CHD and DiGeorge syndrome. We started the 335 Heart Foundation in Morgan's honor to support families and children with Congenital Heart Disease.