Tuesday, March 27, 2007
Another "Best Day Ever"
This post is for my friend, Christina. She doesn't really know about my blog, but she is one of my closest friends - my next door neighbor.

We have known each other since the first day they moved in- just right after she gave birth to her second son - Payton. He is now 5 years old - and will be 6 in June. Her first son - Blake - is Perry's best friend and is also 8 years old. Their dad, Brian, is Perry's baseball coach and he spends so much of his spare time coaching the kids individually, as well as together as a team. He believes in their talent as a team and makes baseball season so enjoyable for the kids. Christina and Brian are like family to us and I rely on her as much as I hope that she relies on me.

She gave birth to her third son - Austin - 2 years ago. Austin is a handsome blue-eyed boy who looks just like his brothers. When Austin was around 6 months old, he was taken to our children's hospital and diagnosed with CDG - Congenital Disorders of Glycosylation. It is a very rare disease and most kids with this disease are not even diagnosed properly. They have therapists working with them on a weekly basis and Austin hits milestones. They are Austin's milestones in only Austin's time, but they are important strides for this little boy.

We were outside watching the kids ride their bikes this past weekend and just getting caught up from our week. It's finally spring here and we were enjoying it! She brought out some bubbles to blow for Austin. He loves bubbles and will open his mouth wide - as if he wants the bubbles to just float right in. It was very cute - and another milestone - because Austin hates to open his mouth. He is fed through a feeding tube and doesn't know how to handle liquids and solids at this time. But he was loving the bubbles near his mouth. Then Perry and Blake and Payton all start in on the bubble madness and it was so much fun for Austin. They got out a bubble machine, a puppy that blows bubbles and bubble wands that were the length of their arm. So many things that blow bubbles that I had not personally seen because I believed that since Perry was 8 years old, he was way past bubbles. But these 8 year old boys were having a grand time with the bubble machines and making Austin laugh.

And then out of his mouth Perry exclaims... "this is one of my best days ever!"

I just found this essay on a blog recently and I sent this to her. It is very well written and it just so reminds me of what they go through.

Every. single. day.

If you have some time, please send some prayers up for Christina and her family. She is going through her own milestones right now, and I so hope and pray for her that she will find out the many wonderful insights and beauty that is Holland, even though she planned on going to Italy...
And that I will be a comfort and strength to her whenever she needs me.

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.

- by Emily Perl Kingsley


Perry had also seen the beauty in Holland that day... and yes, buddy... it was one of my best days too.

Labels:


  posted at 9:24 AM
  Comments (4)


4 Comments:
At 4:20 PM, Blogger Jennifer said...

Yes, I love that essay. I also sent it to a friend of mine who has a daughter with Downs Syndrome, and she said it very accurately described it.

Yea for Perry for seeing that making others happy is a great way to spend a day.

 
At 10:17 AM, Blogger Katrina said...

Wonderful story and that essay is really good. I will pray for Christina and Austin (and the rest of the family).

 
At 4:08 PM, Anonymous Genny said...

Hi :) Just wanted to let you know that your post really touched me - we have a beautiful 19 month old boy who was just diagnosed with CDG - today I have been searching for info, beyond the typical, the blogs/medical journals/etc trying to find MORE info than the depressing stuff you find on the official CDG websites....Ironically, I just recently read the Holland essay, a friend passed it on to me on a message board and I was going to ask her to pull it up and post it again because I NEEDED TO READ IT TODAY......and here it is, how did I stumble across this just when I asked for it and needed it the most? And what are the odds that the Mom you are talking about has a boy with CDG, a disorder so rare? It's a crazy world.......you are an amazing friend, a real gift, and the time and support you give your friend has probably given her more than you'll ever know.

 
At 9:08 AM, Blogger Lori said...

Genny,
If you come to my site again, please email me. I would love to get you in contact with my neighbor.

My email address is plworden at comcast.net

 

Post a Comment

<< Home



About Me

Name:
Lori

Location: Missouri

I'm a 40-something gal living life in my comfort zone. I'm a wife to Phil and a mother to our 9-year old son, Perry.

Recent Posts

More Than You Need to Know About Me

Friends in Real Life

Books I Read in 2007

Books I'm Reading in 2008

TV Shows I Love To Watch

Archives

Credits
Blog Design by:


Powered by:

Miscellaneous

Search