Special needs school of life – just keep going

Special needs school of life – just keep going

A few Saturdays ago, my husband Sergei and I took Polly and Evangeline, our two daughters with special needs (Polly has Down syndrome and Moyamoya, Evie has autism and Down syndrome) to play soccer in an AYSO program built for families affected by disability in Chicago. A friend from the girls’ school told us about it. “Just sign up. It’s great. It is an hour by the lake front and each child playing has a buddy or two to help them. Our family has been doing it for a couple of years. You’ll love it.” When registration opened, I took a deep breath and signed up my kids.

Special needs school of life – can I be honest?

I didn’t want to sign up the girls because I knew that even with buddies it would be challenging. Evangeline eats non-food items constantly, and seems to have an affinity for grass and dirt which would be a plenty in a soccer field. Polly has a tendency to run off and not listen. And Sergei and I are exhausted from therapy appointments, doctor visits, and a general quest to keep the girls happy and safe. But I knew we needed to sign up for soccer. Because we’ve let our family life get small.

Special needs school of life – don’t live small

When it comes to special needs, and I think other families know what I am talking about, it is way too easy to let our lives become small. I’m talking about small regarding new places to visit and new experiences. It is easier to stick to controlled environments, to places and situations where our whole family feels comfortable. It isn’t horrible in and of itself, except when you find yourself spending most of your time in your living room. So we signed up and went. And it was terrible. Polly was so excited when we got there that she immediately peed her pants. We let her run around the field with a dark imprint of her butt and legs on her purple sweats before changing her in the mini-van. Evangeline spent the hour bent over like a jack-knife stuffing fistfuls of dirt and grass in her mouth. Two buddies were assigned to her, sweet teen-age girls who had no clue how to get this kid to stand up and walk. Sergei and I stood on the sideline and wavered between helping and letting them figure it out, partly because we wanted to see if they could do it and partly because we were just too tired to move our legs.

Special needs school of life – it is hard

I watched my girls struggle on the soccer field as the sun warmed the top of my head. But I didn’t really feel the sun. I felt a winter coldness in my bones. Evangeline appeared to be the most delayed kid out there, a situation we often find ourselves in. I fought the urge to gather her up, dirt, grass and all, and run back home to our living room where she at least would be safe, and we could be happy with ourselves, and we won’t feel the sting of significant delays or the creeping thought that if we could just do better for her, for us as a family, we wouldn’t be in this situation. But instead I breathed and watched and prayed and helped here and there. We got through the hour and buckled urine soaked Polly and head to toe dirty Evangeline into their boosters and went home.

Special needs school of life – abundant life

At a conference in Canada a couple of weeks ago, Emily Colson, author of Dancing with Max and a dear friend talked about how John 10:10 helped her decide to have a fuller life with her son Max who has autism. Jesus says:

“I came that they may have life and have it abundantly.”

She challenged us to not only think of this verse in terms of eternal life but also to think of it and claim it for the here and now. Tears pooled in the corners of my eyes as she talked because there hasn’t been anything at all abundant about my life lately. Polly, Evie, Elaina, Zoya, Sergei, and I deserve to live abundant lives. Down syndrome, autism, and stroke disorders don’t get to rob us of life and experience and soccer on a sunny Saturday. I want our lives to expand. My kids deserve it. I deserve it. And it will be messy, and smelly, and difficult at times but it will be a whole lot better than existing in our living room.

Special needs school of life – just keep going

So we went back to soccer. Evangeline’s buddies figured out that if you hold her hands tightly as opposed to holding her under her arms, she is more likely to walk instead of bend. We watched our little girl who is seven years old but functions around eighteen months fumble the soccer ball ahead of her as she walked a bit. Sure, she still ate grass and dirt. We still had to give her time outs to wet wipe her down and give her a drink but she kept going, smiling the whole time. We had a change of clothes in the van for Polly and warned her that she could not run away or come see us until her coach told her it was break time. We watched our daughter, who at one time was temporarily paralyzed on the left side of her body because of Moyamoya, giggle and run laps with her team. She still came over to us too often, but she didn’t pee her pants. She kicked the soccer ball and made a goal. It wasn’t a perfect Saturday but I was able to feel the warmth of the sun.

“I came that they may have life and have it abundantly.”

With God’s help, I hope that we can claim this verse for the here and now, on typical Monday nights when dinner is late and we all are cranky, and when we get opportunities to sign up for soccer on Saturday afternoons because in the special needs school of life, I’ve learned that we just need to keep going.

What is something new your family is doing in an effort to just keep going? Share with us in the comments!

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Gillian Marchenko

Gillian Marchenko is the author of Sun Shine Down, a memoir about her daughter Polly's birth and diagnosis of Down syndrome while the family lived in Ukraine. She writes and speaks about special needs, depression, adoption, and deep belly laughs and lives in Chicago with her husband Sergei and their four daughters. Most Sundays, you’ll find Gillian in the back row of the church Sergei pastors, bouncing a toddler on her knee and giving the older girls the look. The world is full of people who seem to have it all together. Gillian speaks up for the rest of us. Check out her website at www.gillianmarchenko.com.

Latest posts by Gillian Marchenko (see all)

• For parents who aren’t ready to celebrate Down syndrome during Down syndrome Awareness Month - October 7, 2015
• Love pushes us to the front of the crowd, reflecting on a dual diagnosis - April 1, 2015
• Letting go of self-sabotage on the special needs journey - March 4, 2015