My Girl’s Goin to Disney World !

Anyone reading my blog who is friends with me on facebook, or in “real life” (What’s that? 🙂 ) knows that my girl Jordan was accepted into the Disney college program. And they also know that I am so very happy and proud of my girl! So if you are sick and tired of hearing about how happy and proud I am you don’t have to read further…I understand and would probably say “Dawn, shut UP already” if I were you. But I can’t help myself, I feel the need to document my feelings, and explain to anyone who cares to read exactly why I am so happy and so proud. And just maybe, somehow, someone may stumble across my silly little blog and be inspired by Jordan’s story. That would make me even more happy and proud.

I have written before about Jordan’s genetic metabolic disorder…please read this past post if you want more details of how Jordan came to be diagnosed with Very-Long Chain Co-Acyl Dehydrogenase Deficiency, or VLCAD for short. As I wrote, Jordan is deficient in an enzyme that breaks down fatty acids into glucose. So when she’s sick and can’t eat, or if she over exercises, her body can’t get enough energy and the fatty acids build up in her system and that causes many problems (and before her diagnosis, almost killed her).  The disorder is totally manageable now, she just has to make sure that she eats regularly and she probably can’t run a marathon.  She has learned what she needs to do to make sure she avoids trouble, and I think she would agree that on most days it doesn’t impact her life in any major way.

But, as I also wrote, she also suffered mild brain damage from the initial crisis. As I always say, Jordan’s IQ is in the average to high average range, and her emotional IQ is off the charts. And she has re-gained much ground from that dark time of her diagnosis. She’s just a little forgetful at times (aren’t we all?). Math is hard for her, as are most tests (more on that later) She has to work extra hard at some things, is all. Sigh. Even after writing all that, I can’t seem to capture, in words, all that I want to say about Jordan, and all that she’s been through, and why this Disney program means so much to her and to me. So this may sound jumbled, but I’ll try to just write from my heart, and try my best to explain…

Jordan in her signature pigtails with Mickey

Jordan in her signature pigtails with Mickey

I remember the year that Jordan was so sick, it was right after her diagnosis. Again, I will do my best to spare you all the gory details but she developed something called Eosinophilic gastritis. On top of the VLCAD Jordan also had multiple food allergies (we’re pretty sure there is a relation), and soon after her metabolic crisis it seemed that her food allergies “flared up” to the point that she became allergic to almost every form of protein, which caused the lining of her stomach to swell (the eosinohils), which caused the outlet to her stomach to close almost completely shut…she began to vomit almost everything she ate, which then triggered the VLCAD…it was a nightmare of a time and we ended up rushing her to the ER at Johns Hopkins (only several months after she almost died), and she spent over a month in the hospital, on an IV while they gave her prednisone to relieve the swelling of her stomach tissue so that she could tolerate this special formula that they developed at Hopkins.

After spending over a month in the hospital we returned home (I say we because I spent every night with her there on a “chair bed” in her room, except for the night in the ICU when there was no chair bed and I crawled under her crib because I couldn’t sit up anymore and I refused to leave her and a nice nurse gave me a blanket and pillow) and Jordan, who was almost 2, had to survive on this nasty concoction of formula mixed with this special oil and vitamins that she had to have for her VLCAD. No solid food. Eight servings a day.  So I made it a special time and let her watch videos while she had her “milk”, and she watched every Disney movie I could get my hands on. Over and over, she sat there drinking that potion that was keeping her alive, for months, holding on to her Goofy or Mickey or Donald Duck doll, until we went back to Hopkins and she spent another couple weeks there being reintroduced to food. (For those who are wondering, Jordan outgrew most of the food allergies, but childhood was hard, especially birthday parties because she was allergic to milk and eggs and she couldn’t have ice cream and cake. Sigh. So we’re thrilled that ALL she’s allergic to now is peanuts, which is dangerous, but compared to what she’s been through, a piece of cake).

Here she is on her 2nd Birthday, eating some nasty rice four, egg-less oil cake...

Here she is on her 2nd Birthday, eating some nasty rice four, egg-less oil cake…

And another Lion King themed party...pure Jordan face

And another Lion King themed party…pure Jordan face

So Jordan grew out of the allergies but never out of her love for Disney…she loved all of the Disney films, but the one that really resonated was the Hunchback of Notre Dame. Nope, no princesses for my girl, she loved Simba too, but the Hunchback was her fave.  I know that she definitely felt a kinship with him, with anyone who was “different”, Jordan’s “differences” weren’t visible and they weren’t nearly as bad as what others have to suffer, but I know that she must have felt different from the other kids in some way, and so she loved Disney’s Hunchback.

Jordan and her Hunchback, in Dalmatian wear...

Jordan and her Hunchback, in Dalmatian wear…

And for me, it was a balancing act, how to not be overprotective on the one hand, and how to not be in denial on the other hand. I remember the time in Kindergarten, Jordan was in a private (awesome!) school in Boston and I was looking into where to send her for elementary school – I had found this affordable hippie lefty school that I thought Jordan would love – and the oh so kind principal of her kindergarten, who loved Jordan, pulled me aside and said, in her crusty New England direct but caring voice “You really need to send Jordan to a public school -she needs special ed services and they won’t be able to accommodate her in any of the private schools here”. So that was the first time it really hit me that Jordan’s crisis had caused some brain damage, which was confirmed after many visits to neurologists and tests and mores tests, so many tests. She had IEPs and 504s and all of the other special ed acronyms all through school, documents that said things like “Jordan needs to sit in the front of the room and she needs cues to stay on task”. “Jordan needs to be allowed to go to the nurse’s office whenever she needs a snack”. “Please ensure that Jordan has noted her homework assignments”. “Jordan requires additional time on tests”. “Jordan should be allowed to write in the test booklet”…ahh that last one, we finally figured out why Jordan failed all those miserable standardized tests. She just doesn’t fit the model, and in our test-crazy society that meant that she really bombed on the SATs, which, combined with her average grades (I won’t get into how I feel she was let down by her high school, that’s a whole blog post on its own), pretty much meant that she had no choice but to go to community college. Which is a good thing, and many kids do that and I’m happy that she’t thriving there, but she missed out on the opportunity that so many of my friends’ kids had, which was to go live in a dorm with a bunch of other girls…it just wasn’t an option for her. But now, thanks to the Disney College program, she’ll have that opportunity…she’s already been in touch with several girls in the program and they have formed a nice little support system. They ALL love Disney and video games and all the things that Jordan loves. Wow.

That makes me particularly happy because Jordan also suffered from bullying, particularly in middle school. My heart still breaks open when I remember the time she cried over a really mean thing that some of the “popular” girls said to her. It still brings tears to my eyes, because despite all of that, despite everything you’ve just read (thanks for sticking with me!), Jordan has THE sweetest, THE happiest disposition of anyone I know. I wrote on facebook that if anyone deserved to be in Disney World it’s Jordan…she is the only person I know who could tell people all day long to “Have a Magical Day”, and sincerely mean it. I think that maybe that’s why she was teased, she has such a child-like joy in the simplest things, in just about everything.  She just said to me today: “When am I never smiling”? And I had to admit that I can’t think of many times.

When we went to the “real” Notre Dame in Paris last year, she was literally shaking with excitement…and it all started with that Disney movie: “Mommy I Hunchback, you be Frollo, chase me” she’d say, and she’d laugh and laugh as we ran around, me yelling “Come here Hunchback”…I have to be honest and say that so many times I’d think “Oh God, please, I just cannot be Frollo for one more minute”. But now, it makes me smile, and I feel so proud, so proud. Jordan, you are my hero, you with your non-cynical, accepting, non-judgmental nature…all those things make you the smartest person in the room as far as I’m concerned. You deserve this. You rock, and you are my rock…I love you forever, Mommy (aka Frollo)

Jordan as Simba...practicing for her future role?

Jordan as Simba…practicing for her future role?

Jordan and Ariel...led to this:

Jordan and Ariel…led to this:

and I should add: Major congrats to Jordan’s fiance Kevin, who is also goin to Disney World…he made the College Program too and leaves in August, YAY!!

Disney lovin lovebirds...

Disney lovin lovebirds…

13 thoughts on “My Girl’s Goin to Disney World !

  1. Wow, Dawn, your love and admiration of your daughter shine through in each and every word. That Jordan is the happy, optimistic person that she is, is a testament to your unceasing love and protection of her and a reflection of your own bravery, your own optimism, your own love of life. She’s got a truly awesome mom and she is a truly awesome daughter. I wish her all the joy in the world, she deserves it and she will have it! Love, Jo

  2. Thanks Denise and Jo (two of my favorite bloggers 🙂 I appreciate you taking the time to comment on my post, and I really appreciate your kind words and thoughts…love to you both

  3. That was such a touching blog my nine year old granddaughter has vlcad she has been hospitalized 9 times last year. I stay with her each time as her mom has 3other kids the youngest 2 1/2 and has to work being a single parent. Acacia is my sweetheart and is so brave. Thanks for your story and my best to Jordan gram Lois

  4. Thanks for writing Lois, my very best to your daughter and to Acacia…please know that it gets better, hang in there, all of you. I know that it’s hard, please feel free to reach out to me and Jordan any time. Hugs to all of you, Dawn and Jordan,

  5. This post was a pleasure to read. Your pride and the joy your daughter has brought to you is so obvious. I love when a story of struggle turns to a tail (fairy tail) of triumph. My daughter is 7 years old and has a medabolic disorder ( we are still trying to pin down her specific disorder). I look forward to sharing this post with her. She just loves hearing of other girls who are “just like her”. Elise also loves anything Disney and this will automatically give Jordan celebrity status 🙂
    All the best, Tami

  6. Tami, thanks so much for writing. It makes me feel really good that Jordan’s story inspires others,,,please tell Elise that Jordan says hi, and she says to tell her that everyone can achieve their dreams, and that she is just like her. 🙂 Best wishes to you all, I hope that you get a diagnosis soon…Dawn

  7. I am finally home long enough to read this! What a touching and inspirational story! I am so glad for your family’s Disney fairytale happy ending…which is really a beginning! XOXO

  8. Wonderful post, Dawn! So happy for both you and Jordan…she so deserves this wonderful opportunity and will do Disney proud! Hugs to you all!

  9. I have just now been able to read this and think that it absolutely so awesome. I wish Jordan the best of luck and success. I hope she has the best time and wish her all the magical fun and excitement of Disney. I believe she was meant for this experience since that “bad time in the hospital”. By allowing her to watch all of the Disney movies while enduring the not so nice stuff you were grooming her for just this opportunity. Congratulations to Jordan, you and her fiancee. Sending Hugs your way, God Bless you all….

  10. Jrdan and you are fine examples that good wins out if you just hang on!! I am excited that she will be at Disney Is it here in Orlando . If you and Doug come visit I’ll expect you!!

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