Our Keepsake Journal is Here! 🎉

I am often reminded of the inner strength and sheer maturity of spirit embodied by my 9-year-old son. He has a rare disease that will slowly rob him of his physical abilities. It’s a genetic difference, something as simple as missing three little exons on a particular protein strand in his DNA, but that little difference makes all the difference.

His diagnosis was not at all obvious to the untrained (or trained) eye at first. He appeared to be a “typical” baby and toddler. It’s just recently that those outside of our little circle can see any kind of difference, and sometimes only if they’re truly paying attention—enlarged calves (pseudo hypertrophy), a bit of a waddling gait, some mild balance issues, a labored effort to climb stairs, some difficulty getting himself up off of the floor. Honestly, at times, he just appears to be an awkward and clumsy kid.

Those outer, visible shifts have happened over time, but at the same time, much is occurring inside his small body—changes in heart and lung function, little by little, with constant low-level inflammation and oxidative stress taking their toll.

It’s a terrible disease. Muscle wasting, progressive, terminal—awful words, aren’t they? His dad and I read articles, attend conferences, and continue to educate ourselves and others. We connect with wonderful families living with the same diagnosis and fundraise for the cause. There is no cure. Very few treatments exist. We are well aware of what the typical timeline and progression look like. We anticipate (sometimes with hope, sometimes with fear and dread) what the future will bring.

RELATED: All I Can Do Is Love Him

We were aware of his diagnosis from the beginning when we met him at seven weeks old and knew then that we wanted to be as open and honest with our son about his medical diagnosis as we would be about the fact that he is adopted. Both of these topics simply became and remain part of the vocabulary in our home. We intentionally take all of this at his pace. When he asks questions, we do our best to answer in an age-appropriate way.

“Mommy, will I be able to use my arms when I get older?”

“I don’t know, bud. Some boys and young men can for a very long time. Others can’t. We certainly hope so.”

His response? “Okay, I was just curious.”

From toddlerhood, he seemed to innately know when he needed to take breaks. His self-regulation skills have been off-the-chart amazing from the very beginning. At four years old, he told little friends, “My muscles work differently and sometimes I’m more tired.” He educates and helps to inform his little brother (two years younger, living with the same diagnosis), “You know, someday we’re going to need to use wheelchairs, and that’s okay. You can still do lots of stuff in a wheelchair.”

He goes to physical therapy three times each week. He sees a whole host of specialists every six months to check on the status of his health and day-to-day function. He is poked and prodded—urine samples, blood tests, EKG/ECHO, pulmonary function testing, daily medications and supplements, frequent travel for a clinical trial he was fortunate enough to qualify for with more poking and prodding there. He participates in these not-so-pleasant things without complaint.

He sees others using wheelchairs and observes how people interact with them. He is aware of accessibility concerns—checking for push buttons to open doors and asking about space in oversized bathroom stalls. He already makes accommodations for himself on days when physical activities seem harder or he’s a bit more tired. It was his suggestion to put a step stool in the van to pull out and use to make climbing up that step just a bit easier.

His mode of transportation for long outings is a medical scooter (by the way, he’s an amazing driver!). On a recent zoo visit, we found the accessible ramp to check out the underwater viewing for the sea lions and headed on down. Once there, we discovered a two-tiered area with a set of steps required to get right up close to see the animals. He parked on that upper tier while the other three kids with us went right down to the window.

I hung out with him and he nonchalantly commented on the playful behavior we observed and elaborated on some of his vast animal knowledge. He didn’t seem bothered by the fact he was separated from the other kids. He chatted with me comfortably as we waited for the rest of our group to come back up the stairs.

RELATED: I Loved You Before I Knew You and I’ll Love You Forever

That same zoo outing led to a bathroom stop. He decided to drive his scooter in for the first time ever. I offered for him to park it along the wall and walk into the stall, but he said, “No, this is good practice for when I actually need it.”

At that moment, I felt such a mix of pride and sadness. Way to think ahead and be prepared, little buddy! At the same time, these kinds of experiences hit me right in the gut with sudden reminders that he shouldn’t need to be even thinking about such things—he’s a 9-year-old boy. He should be playing soccer and climbing at playgrounds, not thinking through scenarios in preparation for when his body betrays him.

It surprises me that he never seems sad or upset about such things. Yes, we have meltdowns over doing schoolwork or not wanting to take a shower, but he seems to have accepted every bit of this diagnosis with a dignity and wisdom far beyond his years. He takes his physical difficulties and limitations in stride, and it’s incredible to watch.

We know the everyday things of life will get more and more difficult as time passes. Our family will make additional adjustments and shifts to our routines and the way we get things done. We will support him in every way we can for as long as we need.

My young son has already taught me innumerable lessons about patience, acceptance, and going with the flow. I’m thankful for his example and hope to live my own life with that same kind of grace and ease. My son teaches me acceptance, dignity, and grace. He’s been a blessing to so many in his short time here on earth, but I know there will be many more lessons for all of us to learn as we navigate the future. I look forward to growing in love together.

So God Made a Mother book by Leslie Means

If you liked this, you'll love our book, SO GOD MADE A MOTHER available now!

Order Now

Check out our new Keepsake Companion Journal that pairs with our So God Made a Mother book!

Order Now
So God Made a Mother's Story Keepsake Journal

Christena Estby

Christena is a coffee lover, author, and a homeschooling, adoptive, special needs mama with four amazing kids. She is the household organizer, planner, calendar-driven lady who often drives her little crew nuts.

I Married a Man With Terminal Cancer—And We Lived a Beautiful Love Story

In: Cancer, Death of a Spouse, Relationships
I Married a Man With Terminal Cancer—And We Lived a Beautiful Love Story www.herviewfromhome.com

They say you can’t help falling in love with someone, like we really don’t have a choice, which may be true. But the real love story happens after the falling, when our feet hit the ground and we are presented with the choice to stay or run after realizing the love story contains our messes, our brokenness, our faults and mistakes, our desires and passions, our pain and deepest regrets, our darkest secrets and greatest triumphs. If you asked me if I would change my choice after hitting the ground with my husband Phil, I would always tell you, “No.”...

Keep Reading

I’m Supposed To Raise You To Be Strong, But You’re the One Who Strengthens Me

In: Cancer, Grief, Motherhood
Husband and wife in hospital bed with newborn, color photo

I dreamed of you before I held you. Curious eyes. A smile that lit up your face. When I saw the plus sign, I just had a hunch God was going to give us the same little girl who danced in my dreams. I was right. But I didn’t know the strength you’d give me. The strength you’d give to your daddy. You see, daughter, he was dying when we found out about you. He was trying to hold on. To grasp for any strength he had left for me and your big brothers, but the cancer inside was consuming...

Keep Reading

She Was Never Mine

In: Child Loss, Faith, Grief
She Was Never Mine www.herviewfromhome.com

The Bible talks extensively about stewardship. It is a concept that our worldly broken hearts have a very hard time reconciling with. What we have in our lives does not belong to us. We are temporary caregivers. We stand in place of the real owner. Much like managers who govern in place of a king. This analogy reminds me of a Lord of the Rings reference when in the movie version of The Return of The King, Lord Denethor, the steward of Gondor refused to acknowledge that the true king had returned to claim his throne. Denethor forgot who the...

Keep Reading