Welcome to Holland

This past week I totally played hooky! I got on a plane and flew to London with just my husband. For six glorious days I didn't once hear, "Mommy, I Need ______ (fill in the blank)." Steve was in London for work so I literally spent hours with just the thoughts in my head. So dangerous, I know! Honestly, before getting on the plane I was afraid that the thoughts would turn against me and not let me enjoy this once in a lifetime experience. I wanted so badly to just forget about the past few months, soak up this brand new place, and simply remember who Mitzi (not mom) truly is...

London Calling!

I believe it is safe to say that more tears were shed the week after Jack's diagnosis then I have ever shed before in my life. Always waiting for night to fall so that my precious little bugs wouldn't know that mommy was sad. What would become of them and their lives? Not just what will Jack's life look like, but how will having a sibling with Fragile X affect Nolan and Neva? I know, just by watching them with Jack, even before the diagnosis, that they would continue to be two very compassionate people. An amazing trait to have. But what else? Would they ever feel restricted? Left out? Would kids not want to play with them because of who their brother was…and how would they react to that? Would they resent him? Every night these awful questions would flood my head. I would try to push them aside and tell myself to focus on tomorrow. Just worry about tomorrow. One day at a time. Then the absolute worse thought enters. It's definitely still there….lingering…just waiting for me to remember hundreds of times throughout the day. This is because of you. You passed this on to him. You did this.
Its a guilt that I think will never go away. You see knowledge is power, and I am so happy that we know what it is that has taken hold of our Jack. But knowledge can also be horribly shocking. I am a Fragile X carrier. And women who are Fragile X carriers have a 50/50 chance of passing on the mutation to each of their children. Although I had no idea that I was even a carrier, it is true when I say that it is because of me that he has Fragile X.

Okay, well, that was intense. And that is basically how my grieving period went. Intense but short. Don't get me wrong, I still cry from time to time but I was ready to make sh*t happen with Jack after about a week into his diagnosis. We were going to take this bull by the horns!


We switched neurologists and had him begin this intensive 12 week developmental "bootcamp" called Pediatric Minds which was created by Dr. Hannauer. His new Neurologist.  I know how lucky we are that Jack is verbal, a lot of Fragile X kids are not. But he definitely could not communicate well. His words were limited and worse was the context in which he used those words.

"observations" were helpful, but tough!

       

Jack and his amazing teacher Celi
working through a tantrum.

Conquering the tantrum!

After completing the bootcamp (which he graduated the morning before we flew to London…friggin amazing day!) he can say well over 100 words and is putting them into 3-4 word sentences! He asks for help when he needs, he verbally makes requests and from time to time when I tell him I love him, he will respond with "I love you mommy!!!" My heart literally melted the first time I heard that!

Jack on Graduation Day with his Wita

At this moment, life is really good. Its not always easy, but it is good (I am not just saying that because all the kids are asleep and I am enjoying the quiet while sipping a glass of Chardonnay)! And you will all be happy to know that the demons did not enter my thoughts once while in London. I thoroughly enjoyed my time there. Huge shot out to Wita (my sweet mama) for watching the minions for 6 days. Gracias mami!

When I first entered this crazy special needs word the poem below was given to me. I read it but it never really resonated with me until receiving Jack's diagnosis. I hope it helps give you a glimpse into the world that was once completely unknown to me….XoXo

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
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 plane 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 Rembrandts.
But 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, 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 ... about Holland.