Monday, August 24, 2009

The little yellow school bus

Summer is over and school has started. But for me, it still feels like summer. I am sad. I am having one of those days where I miss Karissa a little "extra." Sounds silly but I will tell Mark "I miss Karissa extra today." Anyways, I keep seeing all the yellow school buses driving by my house. The regular ones and the short ones. It doesn't bother me to see the regular ones. It is the short buses that make my cry. They remind me of the fact that school has started but I no longer have my Karissa to take to school. No going back to school clothes or shoes. No pictures to remember her first day back at school.

The funny thing is that Karissa never rode the bus. I would have never let her ride the bus either. NEVER! Mark often asks me why I get so sad when I see the little yellow bus. Here is why: when I used to pick up Karissa from school, I would wait in line in the car. There were always 3 or 4 little buses waiting as well. I would get out of the car and walk up to the gate to get Karissa. Walking back to the car, we would always pass the little buses. On a few occasions, Karissa would try to climb up into the bus. I remember one of the bus drivers saying something like "she wants to ride the bus", or "mama, you need to let her ride the bus." I would just smile but what I was really thinking was "heck no!" I even remember the week before Karissa died that the school called to see if Karissa would be riding the bus that year.

So, seeing the little yellow buses all around town are a reminder of what used to be. And that makes me sad.

By the way, these picture were taken on Karissa's first day of school.

Friday, August 21, 2009

Welcome to Holland. Part 3

Raising a child is hard work. Raising a child with a disability is even harder. I don't believe that just anyone is cut out to do it. In fact, I know people that wouldn't be able to handle it. I will just leave it at that.

I never thought in a million years that I would be a parent of a child with special needs. While I wish things had been different, Karissa taught me more than I ever could have imagined and I would not change that for anything.

During her short time here on earth, Karissa taught me how to be patient. She taught me how to have an extraordinary amount of faith and courage. She taught me to be a strong person and to fight for what is right. To stand up for myself. She taught me that life is short and to never, ever, take for granted the simplest things.

While I did not get to experience Italy, I did get to experience Holland. It was a beautiful place and I miss it immensely.

Tuesday, August 18, 2009

Welcome to Holland. Part 2

"And the pain of that loss will never ever, ever, ever go away...because the loss of that dream is a very, very significant loss."

This statement from the poem so accurately describes how Mark and I felt when we came to the realization that Karissa would probably never reach many exiting milestones in her life. We did everything we could to help her reach her potential and "catch up." Weekly physical therapy and speech therapy appointments, twice a week occupational therapy as well as weekly home visits with a special education teacher and special day classes.

Coming to terms with the fact that we would never see Karissa jump, or kick a ball, or color or even stack blocks was a loss of a dream. A huge, significant loss. It was hard to take Karissa to the park and to Gymboree, playdates were even hard, not because I was afraid that I would compare her to her peers, but because it only made the loss that much more real. It was truly heart-breaking.

So I started rejoicing in all the wonderful things that she could do. The first time she drank with a straw I cried tears of joy. In fact the whole family rejoiced! I was so proud of the few words she did have and how she would try so hard to communicate using signs. I remember at her last P.T. appointment how happy I was that she had finally mastered a skill that would have been easy for most other 3-year-olds. She made me proud because she accomplished tasks that were so difficult for her. So very proud.

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.

Sunday, August 16, 2009

Welcome to Holland. Part 1

This poem was written by a mother of a child with a disability and special needs. It was given to me by a wonderful woman who has a son with Epilepsy. I am blogging about it for two reasons: 1) to help you gain just a tiny little glimpse of what it is like to raise a child with a disability and 2) to encourage those that are raising children with special needs.

Welcome to Holland

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 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 guidebooks. 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 catch your breath, you look around...and you begin to notice that Holland had 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.

By Emily Perl Kingsley

Saturday, August 15, 2009

My little traveler

Karissa was probably the most well-traveled 3 1/2 year old. Mark and I never thought twice about going on vacation with Karissa. We took her everywhere! Her seizures and special meals didn't stop us. No way!

Karissa was an amazing little traveler. Always content. Always happy. Better than I can say for myself. In her short life, Karissa traveled to Colorado (1st time on an airplane), Chicago, Utah and San Francisco. More local places included San Diego (on several occasions), Las Vegas, Palm Springs and La Quinta. Mark and I have so many wonderful memories of all the trips we took with Karissa.

Since Karissa has been gone, Mark and I have been to Manhattan, Virginia, Washington D.C. and Solvang. It is so difficult making new memories without Karissa. It is all a part of moving on I guess.

Just last Saturday, Mark and I left for a 5 day vacation to Paso Robles. While I was very excited, I had a hard time leaving. I remember telling Mark that I wanted to take her room with us. Silly huh? I was crying fairly hard and I was holding her little ladybug blanket. I ended up taking that blanket with us. I figured that at least her special blanket could travel with us even though she couldn't.