Hope, Loss and the Faith that Everyone Can Be Like Jordan

Hope.  There is really only one word that describes Hope.  Jordan.  I have been waiting for just the right time to talk about her.  Once again, wordpress must have known that I needed to write something special as their suggestion for a topic was just that, hope.  You don’t usually have to go far before you hear about her where I live.  She currently runs one foundation, volunteers for another, works two part time jobs and in her spare time, talks to children who are enrolled in Girls and Boy Scouts about how being disabled doesn’t make her any different on a social level and it shouldn’t to them either.

She is almost 25, has endured 45 surgeries, with one more coming this summer and more than 100 hospital stays.  I think its important to list her “defining descriptions” as she calls them, so that you will truly get to know her.  I will warn you that some of the links are to pictures of Jordan that are tough to see.  So that is why I put a link to get there.  Though she was in pain those days, trust me those moments got her to where she is today.  jody june 13 1986

Born on Friday the 13th, 1986 with the highest form of Spina Bifida one could be born with, sans death at birth, Jordan would have clubbed feet, a T-ten deformity, leaving her with no feeling from the waist down.  Hydrocephalic brain (Hydrocephalus) would leave her shunted.  This would also leave her with learning disorders that would plague her all through her years of education.  She had slit ventricles, Arnold Kiari Snydrome, a Nystagmus, no bowel or bladder control and worst possibly of all, an allergy to latex.  Not a small one either, one that would be anaphalactic and be what would almost be her demise, twice. She has Malignant Hyperthermia.  She would have asthma, allergies to medications and very few friends. Jody 7 days old  She would have a stroke when she was four, on the operating table and a Grand Mal seizure just after brain surgery when she was 16.  She would spend more than half of her birthdays in a hospital.

If you stopped to look up each highlighted item on the list above, it would take a full day or more to completely understand what Jordan would go through over her life.  To make matters worse, she go through a divorce of her parents, a remarriage and move with her mother and physically, would become a Type 2 diabetic and lose both of her legs to the hip at the tender age of 13, when having friends meant everything. She would miss almost the entire 6th grade and would have to lay on her stomache for six months straight.  We would actually take her out on a board, face down, so that she could witness and feel it snow.  Jody pre back surgery 99 It was this time in her life, that even she doubted life itself.  This was when her hope came.  It came in the form of two places in time. Jody depressed 99  This picture dominated my thoughts for many months.  Jordan couldnt hold her head up and gave up.  She didnt eat much and slept for all of about four hours per day.  I thought I had lost my daughter then.  It used to be easy to hold my tears in front of her when she was in trouble or pain, but during this year, it became my nightmare to face her with a strong and happy face.  I learned how to do it and to this day I don’t know how I did. But there were saviors.  These people gave me my “Jody” back.

First, John Stamos became her friend.  You see, Jordan was born on June 13, 1986, like I said before.  She shares that same birthday with the Olsen twins.  Same day and same year.  Even the same time of day.  I think thats why she watched Full House.  Her love of the show was immediate and if it was in syndicate, she found it and has watched every episode, at least five times.  Of course like millions, Uncle Jesse was her favorite.  On her 13th birthday, when a newspaper article would circulate about her recent hard times, John would find out about her love of the show and him.  He came to her house, spent the afternoon with just her.  Since that day over 12 years ago, they have remained friends and email and see each other when they can.  He was and still is a dramatic reason why she never gave up.  Im not sure these days who she loves more though as you all can guess, you go through agents to get to the “big guns” and Jordan has grown to love John’s.  He is just as compassionate and caring and just a joy to be around.  She gets just as excited when she opens an email from John’s agent as she is John, himself.  Its very special.

Dinner after Caberet

Then, Make a wish granted her a wish to meet her favorite NASCAR driver.  A life saver in itself for many reasons.  After she had lost her legs, she lost a large part of her friends.  Not because they were mean or anything on that level.  I always understood why they went their separate ways.  Girls were skating, bowling and beginning to date.  Jordan had harder times in social groups and cringed at boy talk and conversations of thongs.  It slowly happened that her closer friends became the “wave by” friends in the hallways.  They still cared about her, just didnt know how to relate to her anymore.  When she received her wish, it gave her the hope she needed to get through that tough time. 

Jordan and the Liberty

For one week, she got to do things that nobody got to do and she needed that.  We all did.  She hadn’t smiled much that year, until that July, the Pepsi 400 and Dale Earnhardt, Jr.  Once again, these two met afterward, a few years later at another race and they sat and talked and that new moment gave her some hope again.  She was 18, graduating highschool and so much change was coming.

I hope that John, Make a Wish, Dale, The Liberty and all of the people that crossed her life when she needed it most, realize just how they impacted her.  I know she has expressed it, but to see her now, she is a different person.  How so?

Jordan Gala 2009 Co-Chair

Jordan started speaking about her wish when she was 17.  She continues to speak to groups today for Make A Wish about her wish and it’s impact on her life.  Quite a few of the children receiving wishes are younger and it is very hard to express how these wishes change them.  Jordan, like other older alumni members, are their voices of hope.  She has spoken to over 4,000 people to date and volunteers at events as much as possible.  She Co-Chaired the last two Gala’s for her Make A Wish chapter and received the  Lori Schultz-Betancourt Indomitable Spirit Award by Make A Wish National as well. Her most prized moment this year was giving the commencment address to the graduating class at Boces, Jesse Kaplan.

In 2009, she asked me to help her start her own foundation to help children in her county.  We did.  With the help of great friends, who became great members of the board, she started The Forever Jordan Foundation.  She feeds hungry children, raises money to give one child in her county a wish every year, awards scholarships and created “Project Hope”

Foundations First Pool Project Completion

Project Hope offers artwork, handmade gifts and handmade cards to children around the county.  Some go to hospitals, some to psychologists office and some to centers for healing.  Each package is to offer a child hope, who is going through a tough time.  This child knows that someone is out there and supporting them, on their level.

Jordan has become “hope”.  With all of her learning disabilities, she graduated college and is not going to go down lightly to her ailments.  She fights through them every day.  It takes her over 3 hours to restroom and shower and get ready for work.  She does this for a four hour shift.  She is still a social calamity and jokes run over her head like water on a ducks back.  She struggles to feel a part of any group and has one really great friend.  Yet she is hugged more than anyone I know.  When we go out, everyone knows her name and offers a hello.  Her co-workers treat her with dignity and her younger brother is now offering her rides to work.

She really has defined me, my personal desire to be like her and to absolutely never give up hope.  She is why I want to play Survivor, because of who she is and I want to win it for her.  I want to show her that she has taught me lessons, very good ones over the years. I can take so much more than I ever thought I could.  All because of her.

Graduation Day, College - May 2010

If you have some time, visit www.foreverjordan.org and just read about what she has started and how she took the hope she received and is giving it back seven fold.  Even if you don’t have the time, make the time.  It is worth it and if it does one thing, it will give you hope.





About wigsbabe

Never be the Mediator... be the writer.
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7 Responses to Hope, Loss and the Faith that Everyone Can Be Like Jordan

  1. Jody is the bomb! It’s my word of choice for your family for some reason this week! THE BOMB!! XXOOXXOO LOVE YOU Jody!

  2. Barb says:

    Sue, words cant express how courageous your little girl is and has been. Of course, she is no longer a little girl, but an amazing, extremely capable woman, more capable than most human beings. Kudos to Jordan, and to you for raising such a wonderful person. ❤

  3. Pingback: 10 Things… | wigsbabe

  4. Can I just say what a relief to find someone who really is aware of what theyre talking about on the internet. You positively know how you can carry an issue to gentle and make it important. More individuals have to read this and understand this aspect of the story. I cant imagine youre not more standard since you definitely have the gift.

  5. Pingback: A Bad Day for Haiku and A Mother’s Heart | wigsbabe

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