This was shown to us by a good friend and I love this lady's perspcetive. I feel we have been blessed to experience "Holland" and "Italy". Both are wonderful experiences and we wouldn't trade them for anywhere else. (Well maybe Alaska. Hum, how can I make that relate?)



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.

First Day of Preschool

The first day of preschool had finally arrived this fine sunny morning. For the past three weeks, Gavin would get so excited that he would actually shake when he talked about it. Primarily about the part where he gets to ride the big yellow bus. Well, as the story goes, after three weeks of being excited about riding the bus, Gavin now had second thoughts. When he woke up this morning he wasn't too sure he really wanted to go to preschool. When the bus arrived he "ran away". We finally talked him into trying it just one time. After a few tears, he consented and drove onto the bus ramp.

So, it didn't take long and he was ready to go with a smile on his face again! This was, of course, after dad had promised to follow behind in the car along with having his sisters and cousins waving and cheering him on (thanks be to the support/cheering squad).

...and so, as it turned out, he had a wonderful day playing outside, eating pizza and playing Duck Duck Goose.

On the way home from school mommy asked "did you make any new friends." He said, "no I didn't make friends, I meet friends." I think he wanted to make it clear to mommy that he can't "make" friends.

A little later he said, "I sure love preschool, thank you mommy for letting me go to preschool." I suppose sometimes our kiddos just need a little tearful persuasion.

"Brave"

We have a new song on our play list, one that brings back so many memories.

This song was there in the car as I drove down the freeway to see Gavin in the hospital, while I took time in the car to eat some lunch or just go somewhere comfortable for awhile, a refuge from the hospital. It was there when I drove him to and from all of his first appointments.

In the beginning of Gavin's life he and I spent a lot of time at Sacred Heart and Shriner's Hospital. Honestly I had many moments of feeling alone and scared. I remember sitting in the van one day praying and crying to God "I wish someone could be here with me, and I distinctly remember Him saying, in my heart, "I am here and I am all you need". Oh, I love when He does that. Around the same time this song became one of my favorites.

I dedicate this song to Gavin: he makes me want to be brave, he makes me not want to ever get caught up in the "status quo", he makes me want to let go and see what God is going to do.

If Your Happy and You Know It, Then Your Face will Surely Show It!

When Eli laughs it makes me laugh.
When we talk to Eli it makes him smile.
Life really isn't about what we can do, it is more about who we are.
Eli is a very sweet and pleasant boy that loves people.
It really doesn't matter that he can't really talk, or walk or even hold up his head. Those are things that make life more acceptable, but would Eli be happier if he could walk?

I heard a story of a family with a little girl similar to Eli. The family tried everything to help her get better, but the dad said something very profound. He said we are doing all these treatments for us, it is not for her, she is happy.

I want Eli to get better, but I have to think why?

I want him to get better because it would be easier if he could hold up his own head. It would be so fun to see him walk. I would love to hear him say mommy, but ya know what.

He is Happy and I Know it, Because His Face Surely Shows It.

On the Mend?

Well, we have about 25 hours to go before if is officially Eli's birthday. Yesterday, after 31/2 days of fevers, coughing and other yucky things, I took him to our wonderful pediatrician. She checked him over very thoroughly and said he had an ear infection, but his lungs sounded clear. He seems to have some upper respiratory problems. She started him on 2 IM doses of antibiotics and sent him home with the 10 day supply of "oral" meds. I am not usually thrilled about antibiotics, but he was so sick I just "knew" pneumonia was next. Today was still a very long day. He is still coughing a lot and still has a mild fever. This evening he is finally sleeping and I have been able to get him to keep stuff in his tummy. However he started a bad case of diarrhea and he is now on probiotics to counteract the antibiotics. I gave him a nebulizer treatment this morning and he smiled when he felt the cool air on his face. He even reached out with both hands and grabs the mouthpiece and pulled it closer to his face. He looked so adorable, but no pictures because Jeromy had the camera with him in Portland. Oh well, I guess it is a great opportunity to use your imagination.

So here I am late at night giving Eli his meds. I draw up the syringes and proceed to push them through his feeding tube only to realize they were coming out on the chair. PLEASE SOMEONE TELL ME YOU HAVE DONE THIS BEFORE . I do have an explaination. He was finally sound asleep cuddled up on the big chair covered with a blanket. I had him set up on his continuous feed earlier, but I forgot I unplugged it during his last choking episode. I didn't want to disturb him by messing with his tube so I slid the medication Y from the blanket and began pushing the meds. it was then I realized his tube was not hooked to him. Yah, my nursing instructors would give me a big "F". Oh well after two years of tube feeding that is my first one of that particular oops. So, I drew up the meds I had dumped, but 2 of them look very similar and have similar doses. After checking the dose and taste-testing I opted to dump the look a like and start over. I didn't want to risk any more oopses. I have overdosed him on Cyproheptadine before and I will not make that mistake again, I hope. I know I never stand to get a real nursing job ever again after this confession but oh well. I love my kids and "my job" and I don't want another job anyway.

Yah and Jeromy is home from Portland. Yeah for a safe trip, I am glad he is home.

HAPPY BIRTHDAY TO A BIG THREE YEAR OLD!!!

" I'm almost 3"

chillin in the swing


"Guardianship hearing, Eli is ours!"

trying to kiss daddy

around Eli's 2nd birthday

just before Eli's 1st Birthday

I truly hope it is a happy birthday for Eli. He has not truly had a happy birthday yet. Birthday #1 was just over a month from his injury and he was so overly stimulated he could not hardly handle being out of his room. Birthday # 2 he ended up really sick with a cold. We actually woke him up to sing to him and give him a present. He was in no condition either time to enjoy any part of his special day.

I had big hopes for this year. Eli has had so many good weeks, laughing and smiling and cooing. But this week after many weeks of great progress and nothing but smiles from Eli, he has once again fallen into a bit of a slump. Back to seizures, retching, holding his breath and turning blue. He has ended up with a terrible cold and had a 100-103 fever for 2 days. I am praying he will recover quickly and be ready for a little birthday fun. If he is feeling well he might even get a taste of his own birthday frosting.

We love you sooo much Eli and we pray God will bless you with peace and joy. You have brought such an amazingly unexplainable joy to our lives and we hope you have a truly Happy Birthday.

Love Dad, Mom, Kaly, Ayla and Gavin

The Royal Festival

Kaly and Ayla with flowers from Gma Becky and Gpa Mark!

The girls were able to participate in their first gymnastics competition, The Royal Festival. It was so exciting to see them performing the skills they have been developing the last couple of years. Kali started her team off on the beam. I knew very little about the scoring, so when I heard the man next to us say in amazement that the score on the beam was a 9.0. I said "really that was my daughter, is that good?" He said yes that is great. That started the night with a lot of excitement.

Kaly's scores:

vault-7.7/9

bars-8.7/10

beam-9.0/10 5th place in her age group

floor-9.35/10

all around-34.75 7th place in her age group

Ayla's scores:

vault-6.6/9 5th place in her age group

bars-8.2/10 5th place in her age group

beam-7.9/10

floor-8.9/10 4th place in her age group

all around-31.6 5th place in her age group

Ayla's floor routine.

Kaly's floor routine.

Grandpa Mark and Grandma Becky and a friend all joined us for the event. We had a great time trying to keep track of the scores and watching all of the girls perform. It was very crowded and hard to get great pictures so we went to my sister Aimee's for a little photo shoot.