Contributor: Amanda & Jeremy

Amanda & Jeremy

Nurturing your child's dreams

Asher was infatuated with superheroes when he was little. He could not get enough of superhero action figures or costumes and his affection grew tremendously when he met a “real life” superhero at a local event. Asher was only four years old when he enthusiastically and confidently stated, “A superhero is going to be at my birthday party.”

“And so it began, the parent journey of helping our little human realize his big dreams.”

A most memorable six-year-old life-sized dream came true when we took Asher and his sisters roller-skating. We knew our girls could physically skate, but Asher had never walked independently, let alone rolled on skates. That day at the roller-skating rink, Asher did not sit on the sidelines or sit in his wheelchair because he had bigger plans. So, with a lot of help from the business owner and a lot of muscle power from dad, Asher literally skated.

Recently, we watched a show where a main character was announced valedictorian. Asher, now almost eight years old, immediately asked what it meant to be a valedictorian. When the word was defined for him, he said without hesitation, “I want to be a valedictorian.” To which I replied, “I bet you will be, buddy.”

The same way we figured out how to bring a superhero to Asher’s birthday party, or how to help Asher skate, we will figure out how to help Asher become the valedictorian he wants to be.

“We will figure it out together, with encouragement and love.”

And we will welcome those who come along, like that business owner or that “real life” superhero, to help us make Asher’s dreams come true, one dream at a time.

Amanda & Jeremy

I am stronger
because of my son

I find myself around mile 30 of a 50-mile, seven-night trek on the Jon Muir trail in the high Sierra Nevada mountains.

How did I get here?

I’m the model of a modern, domesticated husband and father. Admittedly, groomed for the finer and simpler things of life. Nevertheless, here I am.

Today, I’m mentally broken, dodging mosquitoes and longing for home. “Only” 20 more miles. “Only” two more nights. I miss my family terribly. I want my bed and a shower. An egg sandwich with coffee sounds delightful.

“But the only way home is the same way I got here—one step at a time.”

As I surrender my thoughts to the reality that there is no quick or easy way home, I can’t help but think about my son’s journey with spinal muscular atrophy (SMA). Every day, I watch my son tackle simple living tasks as if he were scaling a mountain. He has no easy way in this life; yet, he tackles every challenge without hesitation, taking one step at a time.

I’ve wanted to cry since the start of my hiking trip from mental fatigue and physical exhaustion, but tonight the tears finally roll down my face.

“Each tear confesses that what I have previously defined to be difficult as a 21st century man does not compare to what I am experiencing as I scale this earth and it certainly doesn’t compare to the challenges my son faces.”

As I reflect on my son’s steadfast and hard-earned strength, I am able to conjure the courage and perseverance to overcome my newfound brokenness. I can wipe away my tears and push on, knowing I am stronger because of my son.

Amanda & Jeremy

Supporting siblings:
our personal tips

As a parent, I have finite time to nurture my children. This is true regardless of having a disabled son, who naturally requires more of my time for his physical and medical needs.

“How I nurture each child in my finite time matters; that’s why being intentional is so important.”

It’s difficult to give each child individualized attention when they are often together, but I find expressing my attention in small ways makes a big difference. My middle daughter loves to hold my hand. Even when I’m with all my children, if I ask to hold her hand, she can sense my attention and love directed specifically to her. Although subtle, my simple intentional action is noticed in her little heart.

Individual time for each child is sacred, so the time deserves to be called something special. When I’m out with one of my daughters, I call it a “mommy-daughter date.” Highlighting the one-on-one time with a special name helps my daughter recognize the dedicated time just for her. Even if the time together is short, the impact is eternal in my daughter’s heart.

It’s important that my daughters recognize that their brother also needs to be nurtured and have quality time, beyond what’s necessary for his medical care. Just like them, he gets “mommy-son dates” too. Just like them, there are specific ways I intentionally express attention and love to him.

Being intentional helps me nurture well, regardless of who needs more of my time.

“Sometimes it’s just as simple as quality versus quantity. Giving my best in the little time I have with each of them.”

Amanda & Jeremy

Navigating Life as an
Interabled Family

An interabled family poses for a portrait on sidewalk in front of a brick building.

We navigate life as an interabled family in a moment-by-moment way.

“As parents, we recognize our limitations and that sometimes we can’t do it all, so we don’t try.”

We do what we can, when we can; but, more often than not, we choose fewer activities and fewer people. This forces us to be deliberate and be intentional with whom and how we spend our time.

We spend time with people who recognize our life runs at a different pace. People who consider accommodations so our disabled son, Asher, can be included in activities. People who are willing to help when things are hard. These are the people who won’t be bothered by coming to our house instead of a park when it’s the best accessible option. These are the people who will swing by on a moment’s notice to pick up our daughters, so they are not stuck at home when their brother is sick. These are the people who understand we can’t always do it on our own, and they are willing to be our village.

Our family ebbs and flows based on Asher’s health. When he is doing well, we are full steam ahead. This is when we register the children for a special activity in the community, we take a spontaneous family trip or we try something new. When Asher gets sick, everything slows down, sometimes to a standstill. We try to divide and conquer when possible to maintain activities for our daughters, but at the same time, we’ve learned that slowing down is a team effort, and as a family, we are in it together.

Activities often require a delicate balancing act. Asher usually needs modifications or extra assistance to participate in activities. Many times, his sisters want to do things that their brother can’t do. In spite of these challenges, we often celebrate our parental victories when we make the impossible possible. But there are times we help our children understand our limitations or their limitations literally make some things impossible to do. Limitations are hard for children to accept, but it helps to reframe their mindset to think about all the times and ways they have and will push past the immediate limitation.

“As parents, we accept that it’s okay to teach our children that they can’t always do everything and yes, in fact, “no” is an answer.”

It’s not always easy to tell how our children are navigating through our interabled family life. We catch glimpses that show us they are doing just fine. Like the moment at a friend’s house when Asher’s sister pushes chairs out of the way to make room for his wheelchair. Or the moment Asher celebrates his sister’s accomplishment for something that he will never be able to do himself. These moments help our hearts rest a little easier. But it’s when we are sitting around the dinner table telling jokes or snuggled up in bed watching a family movie that we know the simplest and sweetest moments are the keys to their hearts – no matter what life they are navigating.