August 6, 2008
Welcome To Our First Beyond Ordinary Blog Carnival!
I used to long for ordinary. I dreamed of it as I sat cradling our firstborn, her tiny form lost amongst a tangle of tubes and wires in a room that we had once planned to be a nursery.
My eyes roved around the room taking in the card table transformed into a makeshift nurses station, the IV pole, the yards of clear tubing snaking along the walls from the noisy compressor in the closet to the trach humidifier stationed next to the crib.
A lovely Beatrix Potter litho had been taken down from the wall near the window to make room for a prominently posted CPR poster and two clear plastic carts flanked the IV pole containing a myriad of medical supplies. Two large power-strips occupied the electrical outlet under the crib and each strip was crammed with black, gray and white transformers that powered the small army of machines needed to keep Jacqui alive.
The closet was filled with lovely dresses and adorable pink jumpers that Jacqui would never wear — they wouldn't fit over her neck mass, their collars rubbed against the sensitive skin near her trach or they didn't allow for easy access to her G-tube. Jacqui's wardrobe consisted of a small collection of utilitarian, snap-down-the-front onsies and sleepers that either had deep v-necks or had the top three snaps left open. No ruffles or frills or girly little dresses. Just me, Jacqui, her white onsie and a Tupperware bowl to catch her feedings that she threw up 10-20 times a day.
Week after week we would sit and rock in the same rocker, watching the turning of seasons through the same window. And I would wonder — what was it like to be ordinary? How would it feel to have a normal life?
I had no idea. Nothing was normal at our house, from our routines, to our sleeping patterns, to the strangers constantly trouping through our house providing therapy and home nursing support for Jacqui. I used to lament to my husband that Jacqui would never have a concept of what a mother was — that one day she would greet me with a wave and a grin, calling out "Hi Lady!" instead of Mommy.
I couldn't even begin to imagine an ordinary world or a normal life, so Jacqui and I would continue to rock and read stories in between pukes, trach suctioning sessions, feeding bag transfers, and diaper changes.
Five years have passed since we first brought our little bundle of medical anomalies home. Five years and our lives still aren't normal, and nowhere near ordinary. The difference is that now I pray they never are.
Something happened in those first few years as I sat rocking a child who tottered on the frail edges of life. I learned to appreciate the extraordinary. I discovered an ability within myself to do the impossible and to find joy in the improbable. I caught a vision of who my child is and the beautiful potential that her life holds. I pray that she may always be beyond ordinary.
What About You? What Would You Like To Share About Your Beyond Ordinary Life This Month?
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Filed under Beyond Ordinary, Day In And Day Out by Michelle
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17 Comments on Welcome To Our First Beyond Ordinary Blog Carnival! »
#1 - Shannon @ Gabi's World @ 12:37 am
I love how you embrace the life you've been given and view it as the blessing that it truly is!
#2 - Elizabeth Channel @ 12:45 am
You have blessed me with an important perspective. I can sit around and whine because my child doesn't fit in the box enough to attend a "regular" kindergarten. Still, my struggles are far different than yours.
Thank you for writing.
#3 - Leila @ 1:24 am
This is so beautiful.
Right now I have ups and downs, either longing for the ordinary or embracing the extraordinary. Hopefully I'll get where you are now. My boy is going to be 5 years old too, but we only found out he had special needs when he was almost 3, so it's still a little "new" for us. We're learning.
#4 - Trish @ 7:20 am
It is so wonderful that you have found peace and purpose in what you have been called to do for your daughter. Such an important lesson for all of us.
#5 - Debbie Yost @ 8:21 am
Beautiful. I love her superhero disguise. Ordinary is overrated. I'll take beyond ordinary anyday. Thanks for sharing such a touching story.
#6 - Danette @ 8:22 am
This is a beautiful post, and I love that picture!
#7 - Lori @ 10:09 am
That picture says it all! Thank you for the great post, I love this new idea!
#8 - Nicole @ 10:13 am
I so wish everyone could learn those lessons that you have incorporated into your wisdom!
#9 - Tammy and Parker @ 10:14 am
Michelle, I can so relate to this post. You know I sometimes just sit and look through the catalogs scoping out the TWO PIECE outfits that Parker will be able to wear after his next surgery.
Kinda dumb, huh?
But with the trach, g-tube, ostomy bags, etc., trying to dress this kid has been rough.
And embracing the ordinary would be excellent if the ordinary was only the extra chromosome. But the health issues…..the never ever really gone from my heart thought of losing Parker…..is hard. Way hard.
Beautiful post!
#10 - Michelle @ 11:02 am
I'm so glad you all joined in this month and I have just had the most lovely morning reading through your posts so far
~Michelle
#11 - Michelle @ 11:27 am
Elizabeth - Just so you know, I've done plenty of 'whining' too — sometimes I still do
Life with these kiddos isn't easy, but it's sure worth it. We weren't able to do regular kindergarten either and have set off in search of another silver lining, so I understand a little of what you're facing right now. The down days are just part of the package. Don't beat yourself up for having them — you have lots of company 
Leila - I just want to hug you
You know, the only thing that allows me to write this post is time and perspective. I didn't feel this way five years ago. Five years ago I got through each day on fear propped up by faith. It's hard when it's new. It's still hard when it's not new. You just have the benefit of time and perspective to soften the sharp edges so that they don't tear into your heart quite as often. Hang in there — you'll get there. 
Tammy - Dumb? Oh, not even close! Hannah Anderson catalogs used to make me cry, so I totally know where you're coming from
And I know what you mean about the health issues. There was big chunk of time where losing Jacqui was a real possibility. I lost sleep over it, cried over it, shouted at God over it. I still have dark circles under my eyes and much more gray hair than I started out this journey with. You're so right. That one little thought of losing them — that's everything and it just tears at your soul.
For the record, I think you do a lovely job of embracing the little moments of joy and beauty in everyday life. Just like Jacqui, no matter how long Parker is here, he's made the world a more beautiful place. He's changed hearts, brought joy, and shared so much with so many people in his young little life. I know, because he's been an extra ray of sunlight in my life.
It's so hard Tammy, and it isn't fair. Just hang in there and know that your family is loved and prayed for. You and Parker are one of the best and most beautiful examples of 'Beyond Ordinary' that I know.
~Michelle @ 5MFSN
#12 - Stacey @ 2:38 pm
I never seem to be one without something to say…
So I hope you like my post!
Beyond Ordinary is just enough!
#13 - Kristenkj @ 6:30 am
I just came across this and really loved the idea. There are so many things that we, as parents of a child with special needs, see that we probably would have never seen had we not been given the gift of our children.
Michelle, you have done a beautiful job writing about your daughter. I was really moved.
I almost feel silly joining in, when what I deal with on a daily basis seems to shrink in comparison. But there are moments that are so heartbreaking, and there are moments that are so thrilling that I want to share…I hope you'll indulge me! I linked to something that I wrote a few days ago about my Henry.
#14 - Goldie @ 12:24 pm
Hey! Found you through "Everyday Adventures" and found her through Genevieve. I LOVE the phrase beyond ordinary! We say "not boring" at my house, or "platypus" (you will have to check out my blog to see what I mean by that, shameless self-promotion *wink*).
I would LOVE to participate in this awesome blog carnival! Anything special I have to do?
#15 - Goldie @ 12:29 pm
oops, I entered my name twice, could you please take the first one off?
Since I had to comment again, I thought I would tell you more about me-
Both my boys have Sensory concerns and display signs of being on the Autism Spectrum. Beyond that I feel a deep concern and care in my heart for children with special needs and especially their parents. That care seems to grow greater with every day.
#16 - Rhemashope @ 7:16 pm
Hi, just wanted to say thank you so much for this beautiful post. I can relate to it in so many ways. There are days when I still long for the ordinary, but your story helps me to be thankful for the gifts God has given. Although I would give anything for my daughter to be free of suffering, I wouldn't trade the lessons I've learned from our experience for anything. Thanks again.
#17 - profitable @ 1:54 pm
Thanks for the great post and the blog carnival idea. It rocks. My best to all the parents that also deal with the day-to-day problems that we wouldn't want to wish on our enemies. Please keep the faith and whatever is left of your sanity. If I had any left I would give you some of mine……
Kim Greenblatt, father to Arianna, Rett Syndrome, father to Jacob, husband to Sharren