The Ripple Effect

Earlier this summer, Erin shared a beautiful reflection about her family and her son Patrick, who participates with DREAM Adaptive Recreation. Her words capture exactly why families are such an important part of our mission.

Here’s Erin’s Story:

Hello, my name is Erin Gilley, and these are my four children: Lydia, Maverick, Patrick, and Quinn.

To start us off, Patrick would like to tell you his favorite joke.

Patrick: Why does a squirrel float on its back? … To keep its nuts dry.

Now I have to tell you a funny story about that joke.

When we went to Patrick’s very first IEP meeting, I walked into the room having absolutely no idea what one of these meetings would look like. I walked in and was suddenly surrounded by the principal, school therapists, the occupational therapist, speech therapist, physical therapist, his teacher, and his aides.

So, naturally, I thought I would break the ice.

I asked Patrick to tell them a joke.

My five-year-old proudly busted out that joke, and my stomach immediately turned as the words started flowing from his mouth.

He was supposed to tell the pirate joke.

Immediately I’m thinking, “Well, here comes the CPS call.”

Turns out, thank goodness, teachers have a sense of humor.

After having our first child, my husband knew he wanted more. Luckily, I held him off for nine months. At our 20-week anatomy scan, I vividly remember lying on my back, looking up at the screen and wondering, “Why does the screen look like a mirror image?” That’s when Randy shouted from across the room, “Are we having twins?” The ultrasound tech pulled the probe off my stomach and said, “You didn’t know?” And from that moment on, those boys have continually kept me on my toes.

At 32 weeks, Baby B (AKA Patrick’s)  water broke, and we brought our identical twin boys into this world. Maverick was 3 pounds, and Patrick was 4 pounds. That was the first of many hospital stays our family would encounter. Looking back at myself as a 28-year-old mom with three kids under two, if I could have given myself any advice, I would have said, “Put your seatbelt on. It only gets more wild from here.”

The boys stayed in the hospital for 44 days and were discharged together as two happy, healthy babies. But as the twins developed, it became obvious that something wasn’t quite right with Patrick. At 9 months old, it was suggested that we get a CT scan of his brain to determine what was going on with our little guy The regular doctor who should have been handling this type of medical case was on maternity leave, so we saw a retired doctor instead. Let’s just say… he may have forgotten how to use compassion, bedside manner and poise. 

I was driving to work that day. I had six showings set up for a client who had flown in from out of town. I pulled into the office parking lot when the results of Patrick’s CT scan came through on my phone. I did what any modern-day parent does with medical results and immediately asked Doctor Google what was wrong with my son. The same words kept coming up over and over as I searched medical terms I didn’t understand: Cerebral palsy.

About five minutes later, Children’s Hospital of Colorado called. I took a deep breath and answered.

This particular doctor must have assumed I went to medical school, because he gave it to me straight using every medical term, I had no idea how to even pronounce let alone understand. Then he finished with, “Do you have any questions?”

As my mind was reeling, I managed to ask, “Do you think he could have cerebral palsy?”

His response was, “Oh, your son HAS CP.”

BAM.

A world of emotions took over me like a tidal wave that day. He basically ended the call by saying, “Call us if you need anything else.” So I did what any respectable 28-year-old woman would do. I called my mom and choked out the words I never wanted to have to say. We sat there in silence with tears running down both ends of the phone line. I knew in that moment that our entire family’s life had changed forever.

Then I called my husband and broke the news to him. After that, I had to flip a light switch, put on my big girl pants, and walk into that office like my world had not just been crushed. I had to make a lifelong choice right then and there. We could play the victim and let this diagnosis seriously affect our lives, or we could keep that light switch flipped on bright and choose to make something positive out of a really hard outcome.

Patrick is incredibly unique because he is an identical twin. And if Patrick has to sit out, then Maverick sits out too. As his mom, I knew I needed to create a lifestyle that would not be different from the way I wanted to raise my children. I didn’t want our family to become a family that stopped doing things and I didn’t want my kids to grow up watching one child be left behind at home with a babysitter. So off we went, seeking adventure.

One of my first big goals for Patrick was to get him to the top of a 14,000-foot mountain. If anyone here has hiked a 14er, you know how challenging those can be. He needed to be old enough to tell me if he was feeling unwell or getting altitude sickness, but still light enough that his mom could carry him on her back. At four and a half years old, we set a date and picked a mountain. That boy rode on my back the entire way, whispering in my ear, “You can do it, Mommy. I love you” and I thought I was doing this for him..  With each and every step, legs burning , heart pounding, fighting hard I made it until I was about 200 feet shy of the summit. My legs were spent. We were on a rocky face, I didn’t pack enough clothes so he was wearing all my layers, and I was in a tank top, the wind was ripping and it was cold! I didn’t feel confident enough in my footing to summit with him safely, but we were so close I could feel it. 

But don’t worry, I had support. My sister took over, and together we got that boy to the top. Again, tears were streaming down our faces.

We did it.

That became the theme of Patrick’s life.

We did it.

Not always the way everyone else does it. Not always easily. Not always without tears, sweat, fear, and a lot of creative problem-solving. But we did it.

As a parent of a child with disabilities, it was easy to go into that dark room of defeat. It’s easy to blame myself for what I could have done different,  it’s  easy to highlight everything we might miss out on because we were raising a child with a disability. And for us, it goes far beyond Patrick. It flows through to all of these amazing children standing next to me. When one child is left out, the whole family feels it. When one child can’t participate, siblings feel it too. When one child has limitations, parents start mentally crossing things off the list before we even give them a chance. When the kids play at home, there is nowhere they don’t include their brother. I can’t tell you how many times I have looked out the kitchen window and seen our five-year-old pulling with every ounce of strength in her little legs on a rope tied to a tow-behind bike trailer, which was invented by his brother bringing him up from the pond.

We have worked so hard to frame our children’s minds around “Patrick can,” not “Patrick can’t.” They don’t see Patrick as a burden. They always make sure he is included.

And that is where DREAM Adaptive Recreation comes in. There is something so powerful about a supportive community with a “yes” attitude. Most people would look at Patrick, with his wheelchair and his sticks, and only see everything he can’t do. And is that list long? Yes. Is that going to stop our family from raising kids who love to be outside, play sports, ski, explore, and chase adventure? No. Do I need help? Well… maybe.

I like to think I can do it all, but when you find an organization like DREAM — an organization that continually jumps in and says, “We’ve got you. We’ll figure this out.” — that changes your life. It changes your life in ways I could never fully describe standing on this stage.

DREAM does not just give Patrick a ski lesson.

DREAM gives Patrick freedom.

DREAM gives him confidence.

DREAM gives him independence.

DREAM gives him the chance to feel the wind on his face and speed under his body.

DREAM gives him a place on the mountain.

And DREAM gives our entire family the gift of being able to participate together.

Your support for DREAM does not only affect the disability community. It affects the families surrounding them. It affects the identical twin brother who does not have to sit on the sidelines because his brother isn’t capable. It affects the sisters who get to grow up seeing inclusion as normal. It supports the mom and dad who thought they might have to throw all of their favorite hobbies out the window in order to put their child first. It supports the fuel that keeps the flame lit.

Being a parent of a child with a disability is essentially a full-time job. There are more doctor appointments, therapies, surgeries, medical bills, travel, planning, emotional strain, and worry than I ever could have imagined. This boy has had 6 surgeries, spent roughly 6 months in total in the hospital, had to learn to walk, crawl and move all over again at age 5 and most recently had both his femurs cut in half to realign his body.  But Patrick continues to have a smile a mile wide and a good attitude.

Stepping into these shoes of raising child with a disability has also been nothing short of amazing. I get to connect with the most incredible volunteers at DREAM, who love my boy like their own and wrap our family in support. I get to raise children who are aware, compassionate, and willing to fight for people who need the world to look a little different. And I get to see firsthand what kind of impact one organization can make when it decides that outdoor recreation should belong to everyone.

Today, you are supporting because DREAM is dreaming bigger.

They provide a place where families like mine can show up and know that someone has thought about us.

You are supporting –

More children.

More adults.

More veterans.

More families.

More people who deserve to feel what Patrick feels when he is on the mountain.

Because when DREAM says yes, it does not just change one person’s day.

It changes the way a family sees what is possible.

It changes the way siblings see disability.

It changes the way parents breathe.

It changes the way a person sees themselves.

For Patrick, DREAM is not just a ski and ride program.

DREAM is proof that he belongs.

It is proof that adventure is still his.

It is proof that the mountain is for him too.

And as his mom, I can tell you there is no gift greater than watching your child experience freedom in a world that often reminds him of his limits.

So today, I want to thank you.

Thank you for your support.

Thank you for your generosity.

Thank you for believing in Patrick, and in every person who deserves access to adventure, dignity, joy, and community.

And thank you for helping DREAM build a future where more families like mine get to say:

We did it.

Thank you.

-Erin, Patrick’s mom