Three Little Birds

Story of 3 little birds and one who soared above us all.

belated blog post

Belated blog update I wrote on the train last weekend during my Chicago get away trip (4/13/12):

“So I met someone on the Internet and am leaving the family for our first in person meeting. No, this isn’t the making of a modern day harlequin romance novel and no I haven’t switched teams on Clay. I do have a return trip scheduled to come back Clay and the kids. I’m meeting for the first time in person my kindred spirit friend Lindsay in the world of dragon moms with identical twin girls with shockingly complex anatomy. Our “keep the docs guessing” girls Lydia and Elena were supposed to meet in a far more glamorous fashion more typical of the end of a very touching lifetime movie where we’d look at the camera and scoff at every doctor in those horrible medical conference rooms that laid out the gruesome medical facts regarding our daughters’ lifetime survival as they went running along the beach with high pitched little girl giggles.  So it is a bittersweet reunion not having my little bird to tote along and someday I’ll bring along Wyatt and Ava for a Chicago style play date.

Just a little bit about Lydia’s friend Elena: she too was born with esophageal atresia and showed Lydia the ropes in the cool girls with a spit fistula, trach and gtube club. She has a healthy heart, although it is on the opposite side, one left lung and a mini el bastardo right lung (named by her mom) lying on her heart and some of the mini complexities that go into having anatomy that is not seen in medical books. In medical reality, she probably shouldn’t have survived the NICU or had long term complications due to numerous “codes” while there. But, she is also a trilingual (english, spanish and signing) almost 4 year old who dances a pretty mean robot and with a finger to the top of her trach can belt out some pretty tunes. She too has an identical and an older sister. Since there aren’t many moms of multiples with intense medical gear groups in the KC area, we’ve basically formed our own solo group over the past 2 years. I’m taking Amtrak to Chicago for our first meet up and for a long over due girls night out for both of us which I’m sure will be pretty tame in the world of GNOs. Rather than talk about hot guys and fashion, we can lament about the good docs versus the ones that are just giant asshats and the pros and cons of medical gear and suppliers. Another favorite topic to bash upon is overbearing mothers of stupid fat healthy babies.  Hey everyone’s got to get their cattiness out somehow.

It’s like the scene in the Band of Brother series (really should stop using war analogies one of these days) where a bunch of newbies come along to Europe and want the details and the dark jaded experienced ones just look shake their head and say you don’t want to know. We are some of the few dragon moms in the world of very complex and medically fragile children that have gone to the greatest lengths to fight for our children that should never have been here. Some of us with victorious moments and others with crushing defeats.

What exactly is a dragon mom? For the full explanation, I’ll refer you to a more touching article about a dragon mom whose son had Tay-sachsen disease.

click here to read the article

I felt more like the dragon mom on crack who while all heart procedures on Lydia were considered “palliative” held on to the naive optimism that medical breakthroughs would ensure a longer and fulfilling life. I foolishly believed a “70 year old functioning esophagus” was her best option and sent her across the country for the specialized Fucker   Foker technique. If a special berry plucked from the fertile grounds of some tree in Brazil with a large amount of antioxidants would’ve helped, I would’ve gone there too. Oh wait, I did try that in utero, thanks acai juice. Fat lot of good you were….

Since most of this is written on the train, I’ll post the orginal with updates added later. If you’re curious about the Amtrak venture, I’m still not quite up for flying unless there’s a vacation beach involved. 15 months of Boston flights and my wings are tired. I’m sticking to the ground for the time being. Plus, half price, less security to sneak the remainder of Lydia’s frozen pureed entrees  to Elena and plenty of time for napping and reading and the start of my new York times best seller.” from 4/13/12

So update: had a great trip. Lindsay was not an Internet serial killer and it never seemed like we were meeting for the first time at all; more like an old friend that I must have known from a past life. I got to spend time with my other set of girls: Evelyn, Vanessa and Elena, practice my hair braiding skills, do some shopping, have some great food at the Cary, IL best dining spots and have an enjoyable girls night out with some fun Chicago suburbanite gals.
I spent my last day making some fun veggie, fruit and quinoa blends for my favorite tubie girl. I barely started giving Lydia mini samples of real food in her tube and not just all processed formula from a can and it was wonderfully satisfying. Elena does a complete blended food diet and it was quite enjoyable to make her some nice meals. It’s like cooking by a 5 year old and far easier to cook for pure health rather than taste: throw everything I would want my kids to eat in a meal into a blender and push the button for a nice pitcher of healthy slop.

Elena taking a snooze in my lap and making a nice Ipad stand.

Here’s a link to Elena’s blog. Please keep her in your prayers as she continues to have ongoing struggles with blood sugar instability and scary fainting spells and is spending the week at Cincinnati Children’s Hospital for some additional tests.

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3 Comments

  1. christy

    Really glad you had a good trip. I am sure wonderful to put a face to what is clearly a long lost sister. I will keep her little one in my prayers. I will also pray for her. I can only hope that she continues to be a good friend to you. She might be the only one that has even a inkling of what trials you have had and will continue to overcome. I hope that she helped you find a little pease in a time when so little is found. Take care.

  2. Staci

    Glad you had a great time!! When I met Lindsay and Elena in person, it felt liek we were old friends as well.

  3. Amanda, I’ve been following your blog since pretty soon after it was created! I became aware of your story through associations with Soca Jukebox (I grew up with Jay Albright). Lydia touched my heart and I’ve been inspired by your family and your story. I have a link to your blog bookmarked on my computer and click on it often. I enjoyed the story of your trip to meet Eleana’s family. Even though you’ve lost your Lydia, you continue to inspire. I hope you’ll continue writing.

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