Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

In Spite of it All

on June 2, 2013

 This weekend was the 11th Annual “Make ‘M Smile” event sponsored by Nathaniel’s Hope.

We attended this fun event, designed to celebrate “VIP” kids with special needs and their families, last year. (You can read about our visit in 2012 here.)

When we attended the event last year, Joss had just been diagnosed with hemimegalencephaly and had not yet undergone  hemispherectomy surgery. We were still reeling from the news and were completely unsure as to what the future held for her. I remembering stopping at almost every vendor booth and hungrily collecting brochures, business cards and flyers from therapy facilities and schools. We were filled with doubts and questions:

What kinds of therapies would she need after surgery? 

Would insurance cover them?

What if it didn’t?

Would she able to walk or would she need a wheelchair?
Would she be able to communicate with us? 
What if we didn’t get her the right kind of help?
What if we missed something?
Though we left the event that day feeling encouraged and fortified with far more knowledge than when we arrived, doubt and worry still plagued us.
One year (and five surgeries) later, we returned to “Make “M Smile”; wiser, more experienced and with a renewed sense of hope.
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(Joscelyn is making her “Let’s get this train moving here, People! Places to go, people to see!” face.)
After arriving, we headed right for the amphitheater, where “Ellis and Tyler” from christian radio station Z88.3 were hosting a concert and other performances. Ellis was leading the audience in a scavenger hunt and I won for having a receipt in my bag for something less than $2.00. (It was for a McDonald’s sweet tea, if you’re curious.) 🙂
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We were especially excited that Joss was going to have the opportunity at “Make ‘M Smile” to see Elmo live and in person! She adores Elmo and we were sure that meeting him would, indeed, “make her smile”. We weren’t wrong! 🙂
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She was thrilled!
I was crying, I was so happy!
Actually, I spent the most of the day crying. (Which you might think is rather odd considering the name of the event but there you have it. It’s been a tough couple of years. Sometimes, it doesn’t take much to get the tears flowing.)
As we were standing in line to meet Elmo, we heard Pat Benatar‘s song “All Fired Up”.
I was holding Joss, bouncing her to the music and singing the lyrics to her:
“Ain’t nobody livin’, in a perfect world,
Everybody’s out there, cryin’ to be heard.
Now I got a new fire, burnin’ in my eyes,
Lightin’ up the darkness, movin’ like a meteorite !
All Fired Up!
Now I believe there comes a time,
When everything just falls in line,
We live an’ learn from our mistakes,
The deepest cuts are healed by faith.” 
As I stood there singing and swaying along to the music, Joss just smiled and bounced right along with me,  snapping her fingers. I started crying right then, not just out of relief because my baby obviously has great taste in music but because we were enjoying the same music together. It was a typical, ordinary mother/daughter moment; mom introduces daughter to killer beats from 80’s rock legend and daughter totally gets where mom is coming from in liking it. 🙂 One of the hardest things about having a child with a disabling condition (especially a neurological disorder) can be the inability to connect with them or share experiences with them. As parents, we all have a desire to pass on our love of our favorite hobbies, activities, books, movies, cartoons, foods, etc. to our kids. When a disability prevents us from doing that for whatever reason, it hurts.
So, “Teaching my daughter to love Pat Benatar”- Check one more item off of my parenting checklist. 🙂
The park was filled with bounce houses, games and other activities for the kids. Joss and Daddy made their own fun, too.
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(Joss is wearing her, “I Train Neurosurgeons” shirt. I knew everyone at the event would appreciate it.)
On the grass near us was a mother sharing cotton candy with her son. He had Down’s Syndrome and they were so beautiful and happy together that I almost asked her if I could take their picture but I didn’t want to intrude. I wondered if on the day that the doctors told her that her baby had Down’s Syndrome, she ever imagined that she would feel such carefree happiness sitting on a grassy hill with him in the Florida sunshine and sharing a cotton candy.
More tears.
Then they started playing, I Believe I Can Fly” and I literally had to excuse myself.
“See I was on the verge of breaking down.
Sometimes silence can seem so loud.
There are miracles in life I must achieve,
But first I know it starts inside of me.

If I can see it, then I can be it!
If I just believe it, there’s nothing to it!

I believe I can fly! I believe I can touch the sky!”
Last year, I hadn’t been a part of the special needs community long enough to understand or appreciate what the children and families in attendance at this event go through on a daily basis. I was still an outsider.
This year, I truly felt like I was part of the family.
Every emotion of the last year- the grief, the hope, the defeat, the struggle, the determination, the fear, the uncertainty, the  joy and relief-washed over me. 
I looked around me at the sea of faces in the crowd and I thought that all of us owed a great deal of gratitude to the  founders of Nathaniel’s Hope, Marie and Tim Kuck.
Marie and Tim Kuck’s precious son Nathaniel was born prematurely on June 6, 1997. He was diagnosed with an undiagnosed syndrome which led him to have multiple birth anomalies including Duodenal Artesia and Craniosynestosis. The Kucks spent the next several years lovingly caring for Nathaniel in and out of the hospital until, at the tender age of 4 1/2, he, as his parents say,  “Relocated to 777 Heavenly Lane”. 
Marie and Tim could have retreated from the world. Certainly, no one would have blamed them. But instead, in Nathaniel’s memory, they committed themselves to reaching out to special needs families.
They could have easily turned bitter at the unfairness of it all, not only because of Nathaniel’s condition but also for having to say goodbye to him at such a very early age. Instead, they let their experiences as special needs parents soften them. They allowed their struggles with Nathaniel to make them more compassionate, more giving, and they continue to use their pain and their struggles to comfort and assist other families going through similar trials.
I was thoroughly and completely inspired.
By far, the most moving part of the day was the butterfly release ceremony held in honor of VIP kids who had passed away. 
Some of those children had attended the “Make ‘M Smile” event with us in 2012 but are no longer here.
I couldn’t help but think of Nick, of course.
My heart was already tender and to look up on the stage at the tear-stained faces of the bereaved parents, each holding an envelope containing a butterfly waiting to be released in their child’s memory, just wrecked me. I heard Marie say that while all of us were having so much fun at the event that day, it was nothing compared to how much fun our kiddos were having in Heaven. 
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As each of the butterflies were released, singer Heather Williams sang her powerful song, “Hallelujah” and gave her testimony which included losing her own sweet son to a heart defect.
Afterwards, she wrote the following:
“On my knees here I fall.
In spite of it all,
Hallelujah! 
And though it seems hard, I’m still trusting you Lord.
Hallelujah!”
In spite of it all…Marie and Tim Kuck held tightly to their faith and created a ministry that helps thousands of special needs families every year.
In spite of it all…Heather Williams continues to use her gifts and talents to bless and encourage others struggling to understand and overcome the difficulties and trials in their life.

In spite of it all…We can each use our pain, our disappointments, our losses and our struggles to bring hope and healing to a hurting world.

In spite of it all, we can help someone else find their “Hallelujah” again.
Hallelujah.

 

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4 responses to “In Spite of it All

  1. Jamie Reich says:

    Jennifer, you are one awesome woman! Your expressive abilities are beyond….. Keep smiling and healing Joss and so many others with your warmth, generosity of spirit and strength. I am honored to “know” you! Jamie Reich

  2. Nonnie says:

    typing through tears, I am in awe of you, your family and others who am moved through such sorrow in order to help others.

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