A few weeks ago, our child psychologist described some areas of my toddler son’s development as “low average.” And we couldn’t be more thrilled!

Two years ago, I would not have thought this was good news. Two years ago, I was the mother of two healthy, typically-developing kids. They were both eaters and growers and met all age-appropriate milestones. They both, dare I say, have above average intelligence (at least that’s what this biased mom thinks).

I’ve read to them almost every day since birth and ensured they participated in adequate tummy time. I intentionally incorporated activities that enhanced gross motor, fine motor, and problem-solving skills. We visited the library weekly and significantly limited screen time. And I congratulated myself for doing a really great job as a mom.

Then our third child, Peter, came along as a sweet surprise in August 2018, and he’s been surprising us ever since.

Peter was diagnosed with a congenital heart defect at one day old and underwent a repair procedure soon after. However, as a result of endocarditis (infection in his heart), he spent his first eight months of life in the hospital with heart failure. He ultimately received a heart transplant when he was six months old. Peter’s start to life was anything but healthy or typical.

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Very quickly my preconceived dreams and expectations for Peter were challenged and seemed to disintegrate before my eyes. In the hospital, there was no tummy time for him, as he was too ill to tolerate it. The newborn pictures I had envisioned never happened. We never used the new bassinet set up in our bedroom. So many adorable 0-3 month outfits went unworn. Instead, there were PICC lines, breathing tubes, life support, grim-faced doctors, heart medications, pain medications, sedation and paralytic medications, IV nutrition, feeding tubes, and surgeries.

And fear and grief. 

Grief for the disappearance of my new baby’s normal life. Disappointment over missing the precious bonding time at home I expected and counted on before I returned to work. Despair over the deprivation of seeing him grow like his brother and sister. I was devastated that dreams for Peter seemed to slip further and further out of reach with each new briefing from our medical team.

The losses came quickly but were just as quickly replaced by fear of losing him altogether before he had a chance to really begin living. That was when I chose to set aside grief over the experiences and milestones we had lost and instead embrace and celebrate whatever Peter’s life looked like, whether it be long, short, typical, or medically complex.

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Before Peter, it never entered my mind to be excited when my child required “only a few” extra boluses of pain medications in a day or had successful surgery to place a gastrostomy tube (G-tube). I would not have thought it cheer-worthy if he merely smeared the smallest amount of yogurt on his lips (but refused to taste it) or exchanged IV sedation meds for oral meds. I would have felt exceptionally overwhelmed if my child needed therapies or ear tubes. And I would have been completely defeated that my child’s development measured in the low-average range. 

However, I now see Peter through the lens of how far he has risen to achieve where he’s at now. He has worked hard and endured so much more than a 22-month-old should. Our whole family has.

The struggle of this journey has taught me to celebrate Peter for who he is and where he is at, not where I wish him to be.

I’ve learned that the slowest progress brings the sweetest victories. I’ve realized that starting out behind isn’t a life sentence. No longer do I search for that ambiguous point in the future as when we will begin our real lives, or when times will be happier, easier, better, or normal.

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There is much joy in watching Peter discover his world and improve his abilities. We celebrate as loudly (or even more so) for Peter as we did his siblings in their growth. We avoid comparing Peter’s progress with others, especially his siblings. Comparison is the thief of joy, and it just isn’t fair to look at Peter’s skills side-by-side with a child who doesn’t have his medical history. Or even one who does. Unmet benchmarks are not a sign of failure. Arrival is no longer the goal. The journey, the process, is the reward in itself.

Progress is progress. Growing and learning, however slow, should be recognized and celebrated. Every child is different and goes at his or her own pace. And every person should be celebrated and cheered on for progress and victories in their own journey.

Erin Hernandez

Erin Hernandez lives in the heart of the Midwest with her husband and three great kids, the youngest of whom had a heart transplant. She enjoys coffee, reading a good mystery, and naptime.