Wednesday, February 13, 2013

Sometimes I Get Sad

Last weekend we went on a little we'resickofwinter/tiredofbeingcold/ifwe'recoopedupinthehouseonemoredaywe'regoingtogocrazy(er), mini-vacation to a local-ish waterpark. I figured since we can't afford it right now, I would use my vivid imagination to pretend my hard plastic chair was actually a stretchy knit hammock, the feel of splashing water was ocean waves on my toes, the sound of children screaming was actually seagulls gliding through the air, the stale gatorade in my Nalgene bottle was a mixed concoction of fruity tropical yumminess that I wouldn't even be able to drink right now, and the little boy yanking his pants down and peeing all over at the top of the waterslide immediately before my children immersed themselves in that very water was... well... that one was hard for even my imagination to explain away.

Anyways.. It kindof worked. To say that the boys had a BLAST would be an understatement.. 

In fact.. I love that this is the only picture I could get of Charlie going down the bigger slides because for at least an hour this is all I saw... a streak of orange shorts and a grin stretching from ear to ear as he ran back to the stairs to do it again. :)

This weekend we heard lots of giggles,

made amazing memories,

enjoyed some much needed down time,

and actually witnessed a few rare moments of brotherly love.

Even Ella was shocked at that!

But something was eating at me all weekend. It started almost as soon as we got to the waterpark. Upon arrival, we quickly checked into our hotel room, changed into our swimming suits, and hit the water. Well, most of us anyways.. Ella was out of sorts from the beginning. She was uneasy in our strange hotel room, uncomfortable in her swimming suit, and the noise at the waterpark was almost deafening to her. (She can hear!) She wanted nothing to do with the water (it was kindof cold..), clung to me the whole evening, and refused to splash and play. 

And the entire time I was holding her on the sidelines, watching my husband and kids play, I was also forced to watch other kids play. Other two year olds. Two year olds who could walk. And run. And talk. And play. And climb the stairs. And go down the slides. And have fun. And as much as I tried not to, I spent the evening watching these kids, wondering how old they each were. I would see the saggy diaper butt toddler waddling around and think "they must be Ella's age." And then I would realize that no, that child was more like a just-turned 1 year old. Ella is 2. What do 2 year olds do? So then I would search out an older looking child. The girl with bouncy pigtails who was excitedly telling her mom about the slide and climbing in and out of the pool all by herself... Surely, she couldn't be 2.. Not Ella's age.. could she? 

As I watched these children play, I was mercilessly haunted by images of what things "should" be like. If the small but oh-so significant letters CdLS would have never come into our life. We would have 3 kids splashing in the pool. Playing together. A little girl who could tell us how much fun she was having. A little girl who could run into the water and not be scared. A little girl who didn't even notice the loud noises because she was having too much fun. A little girl who was throwing a 2 year old tantrum because she didn't want to leave. A little girl who was a typical 2 year old.

When I say that I love my Ella girl just the way she is, I mean it. When I claim that I wouldn't change her for the world, it's the truth. When I write that her life has taught me more about love and faith and living than anything else ever could, I am sincerely honest. When I reveal that I feel beyond blessed to have Ella AND CdLS in my life, I'm truly not trying to overcompensate for my broken heart over her disabilities. It's just that.. sometimes I get sad. Sometime it's hard not to entertain those toxic thoughts of how life "should" be. Sometimes it's hard not to compare. Sometimes when I'm ripped from my comfort zone surrounded by Ella-awesomeness and forced to immerse myself in other people's typical lives, I have a hard time coping. Not all the time.. but sometimes. It's a complex balancing act of emotions trying to juggle being content where we are, yet yearning for something that is not..

I hate to even admit these feelings because part of my mission with this blog is to show people that having a child with special needs, a child who is different, is NOT the end of the world like I once thought it was. That there is not as much to be afraid of as you think. That there is incredible joy and happiness in raising these children. That they are unique individuals who have dreams and personalities and bright futures ahead of them just like you and me. That they are more alike than different... But another part of my mission with this blog is to be completely honest. And share exactly what I'm feeling in hopes that someone else might need to hear these very words to affirm their emotions. So this is where I am right now. 

I'm happy to say the weekend did get better for Ella and I. 
The water was much warmer on Saturday and the noise didn't seem to bother her anymore,  

and she discovered she LOVES splashing 

almost as much as floating down the Lazy River.

I am absolutely so happy with how Ella is doing and the direction our lives have taken with her. But I think it's normal to sometimes still feel sad. I thought this might be a good time to share a story I'm sure almost all special needs parents have read, but maybe not everyone else has called "Welcome to Holland." It might help those of you who aren't in this situation understand how we that are feel.. And help understand the struggle that I have with still being sad sometimes. I know I read it soon after Ella was diagnosed with CdLS and while there was a part of me that wanted to rip it up and throw it out the window and continue to throw my pity party, there was also a part of me who saw great truth in it. Throughout our journey I have found immense strength in it and have grown to absolutely love it. Enjoy!

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.


  1. That was a great story, and a wonderful way to explain what it's like to have a child with special needs. I'm glad Ella was able to enjoy the water park - she looks like an amazing little girl.

  2. That happens to me a lot. As a blogger, it's definitely tricky to walk the line between honesty and yet wanting people to know that this isn't a terrible life. You do a great job with that-always. (btw, your first paragraph was pure perfection. Loved it!)

  3. That was a great story, and I could relate a lot. I follow your blog because I have a sister with bad CDLS, and it encouraged me to know me and my family are not alone in our struggle. Thank you so much for sharing.