The Ugly Truth

A note received from my 5 year old this afternoon:

Mom usess mos uv hur tim toking on the foon.

(Mom uses most of her time talking on the phone.)

Apparently, someone is needing a little more attention...we read a book together and that eased the guilt a bit.

Welcome to Holland

I was given a copy of this in my speech class this week from another mother.
It gives a different perspective to the way I feel and made me cry just at the knowledge that other people have walked this road and feel what I feel. Don't get me wrong...I did already know this...just appreciated the reminder and the reminder to enjoy little M along with my other kids...which I already do...very much.

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.

The Never-Ending Yo-Yo

I was listening the other day to a children's CD in the Caravan with the kids. The boys kept asking me to play a song ironically entitled "The Song that Never Ends". It truly felt like the song and the drive would never end. I feel like that is similar to the emotional yo-yo of life with Little M. Little M herself is mostly joy...temper tantrums have added a few moments of frustration. However, I am so happy and feel so blessed to have little M. However, dealing with therapists and doctors and trying to work on goals often leaves me in this constant swing of emotional good and bad days. The pendulum has at least slowed down and I would even say it spends more time on the up swing than down in the last 6 months. However, just when I think I'm content and have fully accepted our life now, I realize that it is not quite accurate. After a speech session last week, the therapist said how pleased she is with M. To which...despite knowing better, I couldn't resist asking, is there any way we can know yet if she'll speak. That seems to be a consistent issue with chilrden with Trisomy 8, so it is one of the nagging unknowns that I'm eager to reveal. The therapist explained that unfortunately it's too early to tell, but we've got a lot of things that make her hopeful. She already at a 10 month level. Now I think that those words were meant to be a comfort. She's progressing. They certainly shouldn't have been a surprise. We've known for over 15 months that Little M would be developmentally delayed...but something in me what still shocked and saddened by the 5 month lag. I think it is because in my little bubble, she rocks! She's a superstar. She exceeds my expectations and is absolutely amazing. and she is. If only we could live in a world where she really was never compared. Where there were no base lines or standard achievement levels. I can be in that world at home, but like it or not, it's not the reality when we step out in the greater world. People offer advice...saying just focus on her and don't compare...but they are not faced with the barrage of assessments and tests and even just the simply reality of watching kids her age and being unable to not notice their abilities. I'm glad that I have a hope that goes beyond the daily experiences, or I'm not sure how long I would last on this ride...although as a mother, there is generally no exit options...but there are spa retreats.