Strong Enough for Nina

Dated: 27 Jul 2010
Posted by Rachel Coleman
Category: Strong Enough
45 Comments

Last December I received an email with the subject, “I was her legs today. You had a part of it.” Ellen was writing to me from the Ukraine where she was in the process of adopting a little girl. Her email shared how my “Strong Enough” post had arrived in her inbox with perfect timing, timing that changed her family and changed their world. I was so touched, I asked her to please join me here as my first Guest Blogger. Here is their story:

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STRONG ENOUGH FOR NINA

After our youngest daughter was born with Down syndrome, we embarked in the most life altering journey of our lives. She had enriched our lives in meaningful and powerful ways. For this reason, I had spent almost two years looking at the faces of children on Reece’s Rainbow, an International Adoption Ministry for children with Down syndrome. I had fallen in love with many of them, praying that they would find forever families and wondering if any of them were meant to be ours. My husband Andy and I knew that adoption was in our future, but unlike me, he had not felt inclined to inquire about any of the children, so I waited. Occasionally, I would visit Reece’s Rainbow “Other Angels” page. These are the children with other special needs.

It was a late night in July, as I scrolled down the faces, I heard him say while he looked over my shoulder,

“Wait! Scroll back up a little”

I did.

“Right there” he said pointing to a beautiful smiling face, “That little girl looks just like a Stumbo.”

I stared intently at her face.

“Look at her eyes” he added, “She looks just like my sister.”

I got up to find our baby book. A small scrapbook I had made with our baby pictures before our oldest daughter was born. I returned to find him still studying the little face. I opened it up to the first picture and held it up next to the computer screen.

“Honey” I said, “She doesn’t look like your sister, she looks just like you.”

We stared at the photographs, blown away by the strong resemblance.

“You should ask what country she is from and if they have any more information on her.”

“Are you serious?” I asked excited.

“We have been talking about having another child, maybe our next child will come to us through adoption.”

“Does it say what her diagnosis is?” I asked

“Yes” he responded, “Cerebral Palsy”

Cerebral Palsy. The words were heavy, they fell on my heart and threatened to crush it. Cerebral Palsy? I could do Down syndrome, but Cerebral Palsy?

We decided to give ourselves some time to think and pray. We researched Cerebral Palsy and invited our close friends and family to help us sort through our thoughts and feelings. The fact that we wanted to adopt another child with special needs, did not mean that the time was now. I was scared about her disability and my ability to parent her. Could we do it? Could I do it?

As it is in many European countries, children with special needs are transferred from orphanages to institutions by the age of four. Once children arrive in these institutions, many die within the first year. We knew that time was of the essence, and if we were going to be serious about this, we needed to make a commitment to her soon.

It was during this time of “reflection,” that Rachel Coleman wrote her post, “Strong Enough to Be Her Mom.” It was a story about Lucy. Lucy, her beautiful daughter with Cerebral Palsy, her inspiration to be “strong enough.” Was she “strong enough to show her a word beyond sidewalks and ramps?” Would she be Lucy’s yes in a world of no’s?

Rachel didn’t know that the message she had shared in her story, was about to change the life of a little girl half way across the world. She didn’t know that she was asking me, “Ellen, will you be strong enough to be Nina’s mother? Will you show her a world beyond the walls of an orphanage? Will you be her yes?”

Tears started to trickle down my cheeks, they soon became a steady stream, and eventually the flood gates opened up and I was sobbing. I remembered what Andy had said earlier in the day, “She might have Cerebral Palsy but she still deserves a mommy and a daddy that will love her and believe in her potential.”

Talking about Rachel Coleman or Signing Time is common in our house. Our daughter walks around the house holding Rachel’s picture (sometimes she even needs to look at her while sitting at the dinner table) and constantly asks for a video or the music. We know all the songs, and almost all the signs. So when I told my husband I had just read Rachel’s last blog post and began to cry as soon as I said her name, he was sure I had had enough “singing time, and dancing time, and laughing time, and playing time.” But through tears I told him about Lucy and Rachel “I will be Nina’s yes, I will be strong enough for her” I said.

Four months later I held a sweet little girl with Cerebral Palsy in my arms. My daughter Nina.

For almost 4 years she had lived in one room. A room where she slept, ate, and played. Her life consisted of four walls. Even within the walls she had limitations due to her mobility. And while other children might have been taken outside to play once in a while, she stayed behind.

The first day that I was allowed to see her room my heart broke to a million pieces. It broke for the orphans, it broke for those children with special needs nearing their 4th birthday, and it especially broke for Nina.

I asked if I could take her outside to play, I could see other children on the orphanage grounds through the window. They said I couldn’t take her out because she couldn’t walk. I said I would carry her. They said it would be too hard, she couldn’t be carried like a “normal” child. I said I didn’t care. They said I didn’t understand. I said she was my daughter. They rolled their eyes, got her dressed, and put her in a wobbly, metal stroller.

After only a few minutes, I took Nina out of the stroller, it was impossible to maneuver on the uneven ground. I decided she could point and tell me where she wanted to go. As we walked around she would look at me and smile. The reality of her life continuing to sink in my heart. Her world was so limited not only because of being an orphan, but because of her CP. Her world limited to a room. Nobody was there to open her world. Nobody was there to be her “yes.”

I thought about Rachel and Lucy. When Rachel does not feel like running she still runs because she can and because Lucy needs her to be strong enough.

Nina had never had someone stand before a road, willing to explore, to walk, to be her legs. Nobody ever had, and in this place, nobody ever would. Would I be her “yes”? And when necessary, would I be her legs? Emotion welled up inside me, it needed to come out, to be released. So what did I do? I took off running. With Nina sitting awkwardly on my hip, we ran as fast as I could and for as long as I could. We ran, and we ran, and we ran.

Joy, there was pure joy in my daughter’s face! Because in that moment she had legs and in that moment she could run! It was pure bliss!

A worker shook her head at us. She wore a disapproving frown. But on that day disapproval was tossed away, and a child felt the cold wind on her face and ran! Ran with her mama!

That moment birthed determination in me. I will be her yes. I will be strong enough. And when necessary, I will also be her legs.

There are many children with special needs in Eastern Europe and other parts of the world. Reece’s Rainbow seeks to find families for these children. So just like Rachel challenged me, I will challenge you. Will you be a “yes” for one of these children?
Will you be strong enough?

Ellen and Nina

Ellen and Nina

You can visit Ellen’s Blog here: http://www.elliestumbo.blogspot.com

Strong Enough To Be Your Mom – Part 2

Dated: 24 Jul 2009
Posted by Rachel Coleman
Category: Crazy Little Thing Called Life, Strong Enough
76 Comments

Remember last summer, I was in Mexico having nightmares about a promise I had made to Lucy.
(If you missed that, read: Strong Enough To Be Your Mom – Part 1)

Anyway, last summer in Mexico I found an advertisement for a glass bottom boat. I thought it would be perfect for Lucy, because she is not a fan of putting her face under water. She has dysarthria<--- which came along as a sidekick to cerebral palsy<--- which came as a sidekick to spina bifida (Thank you very much).
Because of her dysarthria, snorkeling does not work for Lucy. It is tough for her to get her body to either breathe through her mouth or her nose.

I asked Lucy if she would like to see the fish, but do it in a boat and not even get wet! She loved the idea. I called the company to make the reservation. I asked them about wheelchair accessibility ;) there was none. A bus would pick us up and take us to the main location. We would board a speedboat and it would drive us out to a small submarine. Then we would transfer onto the sub go down a tight spiral staircase to our seats below!

No wheelchair. Not for any of it. We would be gone for at least 6 hours.

Could I do it? Could I carry all 40+ pounds of her? Could I carry her as I exited a boat, out in the ocean, and hopped over to a sub?

Was I strong enough to bring her to new experiences? Or because of my lack of physical strength was she literally “bound” to her wheelchair? Was I strong enough to show her the world beyond sidewalks and ramps? The worlds of dirt and gravel and sand and water and beauty? What would she think of me if I failed her? Worse yet… what would I think of myself?

My nightmares the night before included being dropped off with her in the desert, with nowhere to rest, nothing but sand, sand dunes and smooth rocky hills. After hours in the hot sun, moving her from piggy-backing to a side carry, to baby-in-arms hold, I frantically looked for anyone who might have a stroller. Even in the deep sand a stroller would give me a little rest and we could still slowly move forward. I moved her to my back as we bouldered across mountains of rock.
When I woke up I was exhausted, soaked with sweat.

That was a year ago.

I was able to hold her as we stood in line, transferred to the boat, transferred to the sub and back to the boat. We had a great time together and I don’t think my daughter ever knew my fear… my fear that I would let her down. The fear that I might be just one more “No!” in a world full of people, who throughout her life, will simply look at her and tell her, “No.”
On the Boat Cancun '08

Something changed in me that day. I began working out harder at the gym, running faster and farther. I looked for better backpacks to carry her in.

With Lucy as our inspiration, Aaron and I signed up with a personal trainer and started training with him 4 days a week. I felt silly doing it, I didn’t want to tell anyone because it felt so “Hollywood!” (Um, YES! I TOTALLY have a personal TRAIN-ER!)
But I wasn’t going to be stopped by feeling silly or cliché. My reasons were bigger than that. When Jared, the owner of the gym, and Matt, our trainer, asked what our goals were, Aaron and I said, “We definitely need to be able to dead-lift 50 pounds, over and over and over again. Every single day.” I said, “I don’t care if I lose weight, but I need to get stronger. We have to increase our overall strength because we have an 8 year-old in a wheelchair and every day she is growing. We have to keep up with her!”

Jared Trevino, who owns our gym, Fit Forever, offered to come to the house and watch how we lift and transfer Lucy. He watched us load her in and out of her car seat. Then we loaded her wheelchair in and out of our car. Next we lifted her from her wheelchair and sat her on her bed, then moved her back to the wheelchair. Then we transferred her to her feeder chair at the dinner table.

I set her on her back, in the bottom of the tub. I stepped in, straddled her and lifted her out, stepping carefully over the edge, one foot at a time, like I do when she has a bath. (A maneuver that is much easier when she is fully clothed and dry.)

We put her in her small wheelchair and “bumped” her up and down the stairs. We put her in her stander and then pulled her out of it.

Jared then showed us how to do each of those things with correct form, giving us more strength, more control, protecting our lower backs and protecting Lucy. We had been doing it all wrong… but only for the last 9 years. :)

Our trainer, Matt Williams, says that very few of his clients train as intensely as Aaron and I train. I wonder if many of them have as much at stake as we do. We are Lucy’s legs. We are the wheelchair, when the wheelchair says “No.”

When we workout on our own, people literally stop and stare. They stop us to say that they are inspired by us and that they can see our determination. They assume we are in training for a physical, competitive event like a triathlon or marathon. When they ask what we are training for I say, “I’m training for my daughter, Lucy, who’s in a wheelchair. I’m training for our life.”

Lucy is my motivation. When I don’t want to run, I still run… and I run… because I can run. She may never run, not in her whole life, and I just won’t take my ability to do so for granted. I push myself physically so I can carry her. So I can run with her. I do it, so I can be a “Yes.”

A couple of months ago, Lucy asked, “Mom, can just you and me go to Disneyland sometime? Just you and me. Not Daddy, not Leah.” (In my mind I quietly, nervously, calculated the number of times I would need to lift her. Then I told myself to “STOP IT!” And I told my daughter, “Yes.”

Welcome To DisneylandEverybody say "Dumbo!"

“Mom, can I hike through Goblin Valley?”
“Yep.”
Goblin Valley, Utah

“Mom, can we hike all the way up to Delicate Arch?
“Absoultely!”
Delicate Arch - Moab Utah

Let’s just say it… there’s quite a difference in my physical appearance from Signing Time Series 2 to Baby Signing Time 3 & 4. Actually, I have been all over the scale map from the first show to the most recent.
wo8i2478_2dsc_5411_2

Honestly, I’ve struggled with my weight my entire life and finally, finally I’ve found something that motivates me. A reason to push myself. A reason to really ask, “Is that all you can do Rachel? Are you sure?”
One word- Lucy.

A few nights ago I carried Lucy down the hall to get her ready for bed. I placed her on her bed, so that she was sitting up and leaning against the wall. She smiled at me and said quietly, “Mom, I can tell you’re getting stronger.”

And that’s the best reward of all.

Lucy Coleman

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