JACK'S STORY

I remember vividly, as if it was yesterday. I was sitting on my bed when we got the phone call from Dr. Schaefer. My husband John was in his closet putting on this tie to go to work. The children were riding their little tikes cars all around the wooden floor in our bedroom. The moment seems frozen in my mind like a snapshot.

Dr. Schaefer informed me that our oldest son, Jack, who was 8 years old at the time, had a diagnosis of Fragile X Syndrome. Sure, I had heard of it. I studied about it in nursing school. Then I promptly erased it from my memory, because I would never need to know that information again.
We realized early on that Jack had developmental delays and special needs. It is often difficult for medical professionals to pinpoint a diagnosis and we initially did have a misdiagnosis. But even that was a blessing, because we we were able to get him in an Early Childhood Intervention program by the time that he was two.

In some ways, the diagnosis was a relief. It meant that there was a medical reason for all of Jack’s struggles. As I watched Jack push his little tikes car with his feet, it was hard to see a son with Fragile X. Whether he had a diagnosis or not, what’s the difference? He was still Jack.

Then we had another decision to make. Do we test our youngest son Jacob? He was six at the time. He had an IEP at school, his own aide and received speech and occupational therapy. It was certainly a logical thing to do. But for me it seemed just as logical to believe that Jacob imitated Jack’s behaviors. It’s amazing the blinders you can put on as a parent. One month later, we decided to test Jacob. He, too, had Fragile X Syndrome.

Over a dozen of my immediate family are affected with Fragile X or are carriers of the gene. I can honestly say it has brought us closer together and I enjoy sharing this journey with them.

My children have taught me way more then I will ever teach them. They continue to do so on a daily basis. They know no strangers. They love unconditionally. They see no difference in age, race or creed. They are joyous and full of energy. The focus for their life is not how much money they can make, whom they will marry, what college they will go to or what kind of a great career they will hold. Their primary goal is to find the joy in each moment of each day. Our priority is to find their strengths and help them develop skills to become a functional member of society. That seems easy doesn’t it?

We want them to be self sufficient, polite, and love their fellow man. Shouldn’t we all strive to meet that goal?

I can’t help but think of the Dear Abby article my mother sent me shortly after the kids were diagnosed. It is a piece by Emily Perl Kingsley titled: “Welcome to Holland.” It says that raising a child with disabilities isn’t horrible-just different.

It compares the experience of raising a child with disabilities to that of planning a trip to Italy, flying overseas and then the flight attendant announces over the intercom, “Welcome to Holland”. “Holland?” you say, but I was supposed to go to Italy. All my life I have dreamed of going to Italy. Well, you are in Holland, and there you must stay…

So you must go out and buy new guide books, learn a whole new language and 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, Holland has tulips and Holland even has Rembrandts!

Everyone you know is busy coming and going from Italy, and they’re all bragging 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 go away, because the loss of that dream is a 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 about Holland.

Being a mother of two boys with Fragile X has been an incredible blessing to me. I sure wouldn’t have picked it for myself, but God’s ways are much higher then ours. He knows the plans he has prepared for us. My job is to stay the course, and strive to do all I can to help my children grow physically, mentally and spiritually.

I have met so many wonderful people along the way. I would not give this up for anything. Oh, you bet your boots, there are moments when I want a one-way ticket to Italy. But, then I would miss the very unforgettable, unbelievable, unmistakably fabulous things about Holland. And I love Holland now.

I am glad all of you are in Holland with me!

Megan Massey

 

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