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Celebrating Moments Instead of Worrying About Milestones

Malcolm having fun in a ball pit
October 12, 2018

By Ashley Huffman
As told to Jennifer Clopton

My pregnancy with Malcolm was perfect. He was healthy at all check ups and nothing caused us any worry. I was 30, had delivered a daughter 9 years earlier and was considered low risk, and we were just excited when I felt our boy kick or have sweet hiccups. He even arrived naturally on his exact due date.

But his entry into the world took a very traumatic turn.

We first realized something was wrong when I was in labor. I developed a fever, couldn’t feel my arms, and got too weak to push. By the time Malcolm was born, he was blue, not breathing, and the umbilical cord was wrapped around his neck.  We kept waiting for him to cry, but he never did. And then, on his way to the NICU, he had several seizures.

The diagnosis – hypoxic ischemic encephalopathy (HIE) – brain damage from lack of oxygen and blood flow. The doctors promptly started Malcolm on a treatment called a “cool cap,” which can help prevent further brain damage – but it doesn’t reverse damage that’s already been done. After birth, our son was in a coma for ten days. We didn’t think he would survive. I spent hours pumping milk for him – not knowing if he would ever live to drink it. But it was the only thing I could control, so I kept doing it.

On the fifth day, Malcolm woke up, but doctors said there was nothing we could do to make him better. He needed a feeding pump and gastrostomy tube in his stomach to eat, and we were told he would likely grow up unable to walk, talk, or do much independently.

At first I withdrew at this heartbreaking news. I felt a tsunami of emotions – shock, denial, anger and sadness – and I kept wondering, “Why did this happen to my child? I did everything right.” It was a really tough and isolating time. Family and friends were intimidated by the diagnosis. We were alone as we tried to process the shocking and heartbreaking turn of events.

Thirty-five days later, we took our miracle boy home. We were happy and surprised to find that he was much livelier than he had been in the hospital. We celebrated his first bath at home by gathering his baby soap and personalized Superman towel – we enjoyed every bubble on his slippery pink body.

We didn’t really realize it at the time – but our approach to that first bath at home paved the way for how we would eventually live our life – celebrating each and every small moment as it comes. When you have a child with severe developmental delays, progress doesn’t happen at a “normal” pace. So if something is going to really change, it has to be your thinking and focus. For us that happened when Malcolm was about 2 ½ years old and we realized that as hard as we were pushing him with a variety of therapies, he wasn’t enjoying it and not much was changing. He was miserable and cried all the time. My husband and I were overwhelmed with worry, fear, and guilt. None of us were really experiencing life any more.

And that is when acceptance came.

We came to understand that there was no point pestering doctors with questions about what the future would bring or pushing our son with non-stop therapies that weren’t producing results. The brain is a complex organ, and neuroplasticity – the brain’s ability to change throughout our life – is still a concept the medical community is working to fully understand. Over and over, doctors and therapists kept telling us – “You’ll just have to wait and see.” And while at first that was frustrating, now we see it as freeing.

We realized that for us, having hope doesn’t have to mean dreaming of the day our child gets better or is cured. It can be about having peace and gratitude for what is happening now. It’s not about giving up, but instead, realizing there’s no benefit in worrying about the past or fearing the future. So we might as well live in the present, focus on what we can do, and understand that even the smallest things that most people take for granted can be a very big gift.

Miraculous Malcolm, as we like to call him, is now 4 and has another diagnosis – mixed quad cerebral palsy. And these days our family understands that we have two choices: we can either stress and worry about things that may never change, or we can stop, breathe, and enjoy what we do have. We’ve decided to do the latter.

So we’ve given up looking for milestones and now celebrate what we call “inch stones” – a smile, eye contact, delight when he plays with a balloon, or a contented look on his face as he splashes in the pool or bath. We have accepted Malcolm just as he is, and since we started doing that, he has become calmer and stronger. He even recently started sitting and kneeling. But anything that happens next isn’t something we are hoping for or expecting. It’s simply a bonus.

Sometimes, the best thing you can do in a challenging situation is find peace in the journey you are on – even if it doesn’t look the way you expected. We now realize we can survive anything if we just take it moment by moment. Being mindful and practicing meditation has helped us see that our boy has everything he needs right now. He was never worried about all the things we were concerned about. He just wants to feel comfortable, loved, and happy – and when we made that our focus as well, it healed us all.

You can learn more about Ashley Huffman and her family’s journey on her blog or follow her on Instagram. For HIE support, visit the Hope for HIE Foundation.

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