Heavy

February 25, 2011

Heavy

Sanfilippo is weighing me down tonight. Like a wave, the reality of what we are facing has come over me and I am finding it difficult to breathe. I just read about a fellow MPS mom whose daughter is in her final days. It is so painful to read her story, knowing it will one day be mine. I cannot bear the thought of watching my babies succumb to this horrible disease. Losing not one, but two children to Sanfilippo. Going through the unimaginable, only to know I will go through it all over again.

I am not a mother who has given up hope. I am a mother wresting with reality - wondering if a treatment is going to arrive in time to help Waverly & Oliver.

Can't. Breathe.

Comments

Kristy said…

I don't have words...but I just want you to know that I am praying for you right at this very moment.

February 25, 2011 at 11:39 PM

Carrie said…

I know exactly how you feel. I could have written what you just did, as I am dealing with those emotions exactly. Just a different disease community.

If you want to talk to another mom going through a very similar situation, I'm here for you.

February 26, 2011 at 1:45 AM

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 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.