12 years ago, I took a referral call from the National Office asking if I could please talk with a mom from Arkansas who had a little boy with PWS and many of the same respiratory problems that David was dealing with.
I took the referral and made the call... and my life has been forever changed because of that call.
The mom Stephanie had a little guy who she had adopted who is 2 years younger than David. We hit it off on the phone and in the early years would talk 2 or 3 times a week sometimes... Theses days it's less often... but we always pick up right where we left off! I always smile when I see her number come up and I answer and hear her voice with its cute southern drawl say" Hey Girl!!" That's ALWAYS how our phone calls start! BTW.... she says I am the one with an accent!! LOL!
In the last 12 years we have held each other up through the good times and the really bad times... Stephanie was a single mom who over the course of the last 12 years adopted 7 kids with special needs; 3 with PWS, 2 with Downs Syndrome, One with CHARGE Syndrome and sweet ALlie Grace who had a stoke before birth and was severely brain damaged..... Steph was the driving force and support when we adopted Ben... I often say that if it weren't for her involvement Ben would not be our son.
When Caroline came along 2 years later it was Stephanie on the other end of the phone saying " You can do this!" Stephanie was the first person I called when we walked out of the courthouse after finalizing Caroline's adoption.
I remember a phone call from The Children's Hospital very early one morning... You see, Stephanies Daughter Reagan who has Downs Syndrome had a failing heart. Stephanie fought a ton of Red Tape to get Reagan on the Transplant list... in Arkansas they didn't believe that Reagan had the " quality of life" deemed necessary to be put on the list. Stephanie didn't take no for an answer... instead she went to battle... she contacted congressmen, she got the press involved she pushed and pushed.. she would call me and cry and I would tell her to keep fighting. But Reagans health was failing... then early one morning the call came that they had a heart... and I got a phone call from Steph saying that she was waiting in the ER for the transplant team to come in with Reagans new heart... we both cried. I had been trying to figure out how to get to Steph for a funeral... Now baby Reagan was getting a new heart... 10 years later that heart is still beating strong inside a beautiful young lady!
Steph didn't stop there though... she adopted Allie Grace who had a stroke before she was born and her prognosis was not good. Stephanie took her home and loved her. Allie knew the love of her family and lived a wonderful life. Sadly, Allie went to be with Jesus last year. Again... I got a call from Steph... I wasn't home.... and got the message "Allie Grace earned her wings." My heart breaks every time I think about it... sweet Allie Grace who I only ever knew through photo's and through Stephanie... Last night there was a beautiful video tribute to Allie Grace...there was not a dry eye in the house as her sweet face flashed up on the screen and you could clearly see Stephanies love and dedication to her and feel how missed she is. I a m still brought to tears thinking about her....Thank you Steph for sharing her with me... I am forever changed by knowing her.
You see... all this... this friendship... all this love... All Long distance. Stephanie and I have NEVER met in person... Until last night...
Stephanie... who has been single parent to this wonderful bunch of kids for all these years..met a great guy...and got married a month ago in a simple backyard ceremony. They traveled to Long Island to where Roberts family lives for a reception last night.
So after 12 years... and all we have been through... Steph and I finally got to meet in person!!! It was an awesome night! I traveled out with Jake, and David, Ben and Caroline to the reception...
I will let the pics tell the rest of it...
Ben and Stephanie... if he could only understand her role in him being our son!!!
David and Steph
Jake Cool
"Every party needs a pooper...thats why we invited you...." Poor Caroline was soo tired!
3 comments:
What an awesome story! I nominated you for a Lemonade Award, btw. I know you don't know me, but your blog has been an inspiration to me :)
http://isaiahupdates.blogspot.com/2009/11/making-lemonade.html
I'm so glad I came across your blog! My neice has PWS and it will be so nice to read throught your past posts to learn how to better support my family as she grows and changes (she's 2 now and almost walking! So proud!)
hi my name is kaylee hopefully you get on here and can comment me back. or even email me at kewikw@yahoo.com i hav been looking on the internet for other familys with pws. my sister has it and i really wanna know how life is with you kinda cool to find someone who doesnt look at you cray when you say pws haha ples write back :)
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