Monday, November 28, 2011

Bump......repost.......



Hi Turner students!
Thank you for coming here and learning about my Alex, and our journey as a family!!!!
If I could travel back in time and talk to myself. Let myself know that everything I was feeling then would heal. That knowing something wasnt "normal" with my child would one day be ok. The fear, the what ifs would all be gone 4 years later. I guess that wouldn't be life though. So while these feelings were very raw and real. 4 years later I wouldn't want anything different. My ALex has transformed me. After you are done visiting this blog if he has just transformed one of you, that is one step closer to where we should all be.


I wanted to share another moms interpretation of what she feels it is like raising a special needs child, many of the RTS parents have adopted this as there story too, below I wrote my own version of where I am at right now. (This was written in 2008)

WELCOME TO HOLLANDby Emily Perl KingsleyWelcome to Hollandc1987 . 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 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 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.Gloria, mom to Scott (19 w/RTS) and Lizzy 4



I haven't made it to Holland yet, my plane crash landed. No one around me can help, they never crash landed before, there flights have always made it to Italy, their life vests don't fit me, and no one has a rescue boat, but they say they will pray for me. I'm treading water, and the waves are relentless, sometimes I am swept under by the waves with all the tests, appointments, and pain my son goes through. Sometimes the wave of grief pulls me under for the longest time, so deep I cant see the light at the surface.My friends and family are flying above, looking down at me with sad faces, they don't know what to do or say, sometimes they don't say anything at all, I watch them living as if everything is normal, I guess it is for them, don't they see me drowning down here. Even God it seems just watches me fight to keep afloat. I can see Holland's coast, its not too far away, I know that its "coast guard" will be what brings me to my new home. Thank you to all of you, you know my deepest pain, you share my broken heart, I see hope in all your stories. The strength that me and my family will gain, the lessons to be learned. Right now I'm still off the coast treading water, the waves are still too high, but I will keep fighting to stay afloat, and I will be home soon.

By Jessica Pruitt 2007mom to Noah 6, Joel 3, Alex 4mo RTS

Thursday, November 17, 2011

In idle

Button placed (G Day)
4 years later














That was what she said......The wonderful Dr. Cox. Lets keep his g-tube idle. Not in use............NOT ACTIVE. We are just 3 days to the 4 year mark that we were re-admitted to the hospital for aspiration pneumonia which began the ball rolling on getting the g-tube placed. Now we have been given the green light, err I feel ready to turn on the green light and not use this miracle called a mic-key button. LOVE the button! That little piece of plastic kept Alex out of the hospital more than I can count on my hand. Kept him growing better than expected, and gave me a peace no doctor could give me.










Alex eats, and drinks enough that I and his doctors don't feel the need of relying on this plastic to keep him going.










Next goal to get the boy to pick his own cup up and choose to drink........For now, Ill gladly hold it for him, and the button will be idle.................

Saturday, October 15, 2011

Playing keep up

This is officially the longest have gone without blogging. I have never been busier. If I'm honest I have never been happier.
This blog started out very much as therapy, a place to vent the feelings that having a differently abled child brought.
From time to time I am reminded that Alex is different, sometimes it still stings, I guess. I just don't need to vent as much, and I could be wrong, but it doesn't hurt anymore.
I know that the future will bring new challenges that I wont even think about right now because I don't need to.
At this moment in life things are perfect.
Don't you think? Fall is here, school is here, and I have started working full time. It is an adjustment for all of us, but it was time. Speaking of time, I have none. I feel like I am always playing keep up. With the laundry, with the boys, homework, friends, husband, there just isnt enough time.


But, things are perfect.






And like Max is always playing keep up with his brothers, I will do my best here on the blog;) That is when I find the time!












Friday, August 19, 2011

Perspective

Alex no longer has a PDA!

After 4 hours of travel time total, and 3 hours at the hospital, with only 30 minutes of that time being the ECHO, we learned that Alex does not have a PDA, the surgery worked!











We were also told that the septum and his aorta are misaligned.


Basically the problem this could cause is a blocked aorta. However, the doctor who is rather good at what he does, is not concerned with the misalignment at this point. He wants to see us back in a year.


I am a little sad. Here I was hoping we would say goodbye forever.

Perspective though............

Alex is not sick. We are not in and out of the hospital, thriving and he is growing like a weed.

perspective.....








































Monday, August 15, 2011

Oh how I will miss you, let me count the ways....

So many different things I love about summer, the green grass, the warm sun, taking in the view


1. I will miss staying up past bed time....................



2.Sitting in the shade on the deck feeling your breeze.







3.Taking long walks through your parks, and zoos.





4.Cooling off in the water from your heat.





5.Basking in your sun.








6.Staring at your endless blue sky.





7.Tasting your treats only you can bring with someone I love very much.






8.Going out and enjoying your quiet summer sounds........






9.Snuggling in comfy summer pj's







10.Watching hours of baseball.






11.Waiting in line for roller coasters.






12.Picnics on a blanket.





13.Pool parties.






14.cook outs with family and friends.










15.floating






16.Fireworks






17.Running through the grass in my bare feet at top speed.








18.Priceless moments that winter cant match.






Oh summer, please don't go.................................



I'm not ready


School starts this week for my 4th grader, 2nd grader, and 2nd year preschooler, and life keeps moving.























































Friday, August 12, 2011

I could have sworn.

See, here's the thing...........................................









When you sit 10 hours in airports trying to entertain yourself with phone apps, and lots of reading.





Because your flight is delayed, again, and again.




But then you finally make it to that friend you couldn't wait to see.





Take red eyed pictures with her dog.




Eat fabulous yogurt with her circle of friends.




Get up early and go on a run.



Hit the road and head to Charleston, while singing, and consuming an insane amount of tootsie pops. I'm talking in the 20's easy, and that's just me.










When you can walk, and walk, and walk while taking in the sights, and talking about absolutely nothing important.



Play photo shoot in a historical alley.












When you can do this and not feel uncomfortable.


Run to breakfast instead of drive.








When you can ask strangers to take your picture.




Have another helping of yogurt





In a pair of these.



When you can wait out a rain storm without a care in the world of the time, just to sit on the beach for a bit.



Search for a new place to eat, and find the absolute best,



place to eat.








When you can wear a dress like this just to go get ice cream.




And walk King street a million times.






Or have cupcakes for breakfast.




and one is not enough.




So you share 3.






Then on your flight home you think, the funniest thing is that we both have a child with Rubinstein Taybi Syndrome like it is some kind of crazy coincidence, and not the only reason we met in the first place, cause I could have sworn we grew up together.




You know your friends for life.............................