In 2007 our lives were changed forever by Rubinstein-Taybi Syndrome. What we thought would be devastating ended up to be the biggest blessing.

Saturday, September 6, 2014

Seven

Seven years ago on the seventh day of September you came into our lives. Your first experience in this world was fighting to live. For the next few years everything you needed to do was a struggle, a fight. Every fight, and every struggle I was there rejoicing in your success and crying through the setbacks. All that time I was there because you needed me. I was unaware of how much I needed you, how we all needed you. At first glance it may appear as though your hand is being, held, and guided through this life. But............

If we look deeper into the past at the changes that have occurred,  the loved ones that have come into our lives, the transformations that have taken place, and the paying it forward that continues to get paid. If we really look at what is,we see that it is you guiding our hand. Your consistent smile, your determination, your remarkable ability to see the magic of this world and not to be tainted by all the ugly. 
Seven years ago on the seventh day of September we were unsure if you would live, and if you would how hard things were going to be. Today, on your day I want you to know that holding your hand has been nothing but a blessing, and you little man are the one teaching, and guiding, with no verbal words  you are changing the world, blessing those around you, and setting an example. 

Happy golden birthday Alex. We love you. 

Friday, January 31, 2014

I've always been here.


WOW, who is she? So lost, and so so sad. I remember the feelings I had, but I am so far gone from there I almost can't empathize. I remember resenting the parents who were happy in Holland, I remember wanting to go back in time and not even get on the plane. I wanted everything to change. I felt abandoned by everyone. Lives so suddenly completely different, like oil and water, but that was just my perception through hurt sad eyes. I have to really travel back to understand. The thing is, things were always ok. When machines were breathing for him, things were ok. When his heart beat was 290 beats per minute, things were ok. When I brought him home with a feeding tube, and crooked thumbs, things were ok. I never did crash. I landed in Holland, but refused to look around. I was so angry, I kept my face buried in my hands. I, we landed in Holland as a family on September 7, 2007. It is the most beautiful place I have ever been...................................... 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.

WELCOME TO HOLLAND by Emily Perl Kingsley Welcome to Hollandc1987 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 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, dont 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 2007
mom to Noah 6, Joel 3, Alex 4mo RTS

Tuesday, December 17, 2013

Five years is represented in this picture.  Over 1200 signatures, pledges of 7th grade students pledging not to use the R word, and to stop others when they do. The future is changing...... In five more years will this social experiment be different?http://youtu.be/oc_K9c24R5o thank you Turner! I read every pledge, and will hang on to them! Change our future one person at a time.......

Saturday, December 14, 2013

Post Script

  Most people are good down to earth well meaning folks filled only with good intentions. It's not everyday you will run into someone who has every intention of ruining your day, and can't see the good in anyone or anything. These naysayers aren't misunderstood, they make their point known and it can not be mistaken.
 It is the kind folk who say something they think is nice, or don't know what to say so they try really hard to be sweet. For example a social classic "God won't give you more than you can handle", or " He knew what He was doing when He gave you a special child", and last but not least "I could never do what you do".                                                                                                                                 Why you ask do I bite my lip and draw blood when I hear these well meaning statements? They all stem from a place of feeling sorry. Yes indeed there was a time I felt sorry for myself for having a differently abled child. For sure it is still filled with daily challenges most people don't think twice about. Making simple plans is made harder, and extra steps are added to everyday routines. It is what it is. Don't be sad for me and my family. We got this!

P.S. You would too.............................................

                                                               

 

Friday, May 10, 2013

He's got the beat

When I was pregnant with Alex I played classical music to him with headphones on my belly every single day. When he was in the NICU he either heard me reading stories to him or more classical music.

I am certain that when Alex is an adult he is going to contribute to us all in some form of music. Music is his first love, and he has got the beat!

Just after 8 seconds on this video you will hear Alex, lets call it be bopping to the beat. Because he is non verbal I have not heard him use his voice with obvious intention, not including when he is crying or laughing etc........Lately though he has been "be bopping" or when "talking" with his dynavox he will squeal from start to finish that his talker is talking for him.

This boy has skillz! I am in love.



video