When your future walks by

I have two modes: strong and weak. There is no in between and both are contrived entirely out of my own beliefs in how I should act or think or how I’m expected to handle a situation that comes my way. So when I let down my guard or show my emotions, I am weak, plain and simple, in my mind. I know that’s not the case and I know it’s only human to not be 100 percent strong 100 percent of the time. But pre-Mommy Mode and post-Mommy Mode is like night and day.

So the other day at work I quite literally saw my future walk on by, right in front of my unsuspecting self. I was standing outside the resort when for some reason, I felt inclined to turn around in the other direction. At that exact moment, I saw 10 seconds of a mother’s day-to-day life. The mother of a son with Down Syndrome. Her son was tall, thin, smiling a large smile, but clearly impacted greatly in several ways by Down Syndrome. He was hesitant about the stairs in front of him, confused about where he was heading and staring excitedly and innocently at the world around him, noticing the flowers in neat rows, the cars being parked nearby, the people standing on the porch. And his mother, graying hair, tall herself, reeked of patience and a heart that is still not whole. She guided him, one hand on his arm, talking to him even though he was much more focused on the task at hand. She looked at him, seeing 20-plus years of moments like this and 20 or so more to come, the two of them never to be equals, she always being his leader.

My throat hurt, my eyes filled with tears.

And as quickly as I started feeling bad for myself, I felt horribly unfair to Zack.

We don’t know what Zack’s life or abilities will be like in 20 years or 20 months. We don’t know what we’ll be like as parents at that time or what other obstacles we may have between now and then.

In the next month, we face two consultations with doctors. The first one, on Tuesday, is a yearly exam with Zack’s pediatric cardiologist. At birth, Z-Man had two holes in his heart that were (hopefully) going to close by his first birthday. At his last pediatrician appointment, though, the doctor thought he heard a murmur. Children with Down Syndrome are often impacted by serious heart defects.

Then in mid-October, we go to Children’s Hospital in Pittsburgh for a consultation with the pediatric urologist. Zack will likely be facing a surgery in the next year — killing two birds with one stone as we try to help his non-descended testicles (keeping them up can increase his risk of sterility and testicular cancer) and a hernia near his belly button.

I’m a nervous wreck.

When Zack was five days old, we left the hospital for the first time, heavy with a new diagnosis and exhausted from an extremely long hospital stay and traveled to the cardiologist’s office, where our nine-pound baby was attached to wires and coated with ultrasound goo as a strange new doctor with a heavy accent looked around his tiny heart. I cried so hard trying to breastfeed him in a private room afterwards, wiping the blue goo all over the doctor’s chair that it was the biggest failure of a feeding we had. I thought I had actually been feeling my heart break in two and I knew that this would be no ordinary parenthood.

I knew that life would never be the same.

But it’s still shocking when it stares you in the face. When a lanky boy with a beautiful smile has no idea how much his mother loves him, how much she would do for him. How much she has sacrificed, studied, learned, prayed.

Zack is getting a one-year evaluation from Early Intervention and we have already been warned by our therapists that we may not like the results and that we, a collection of his caregivers, may have failed him, becoming too comfortable with how we were doing things to encourage more and more independence, strength… success.

So, we endure crying while we force him to feed himself puffs and melts and pieces of cereal, we urge him to hold his sippy cup despite the fight he gives us and we fight right back, pulling him up to stand and letting him roam and crawl and explore. Because I’ll be damned if I ever let myself fail him. If I’ll ever let anyone fail him, give up on him or stop him from having every.single.opportunity humanly possible. I will never look back in regret; I will never wonder if we all did enough for him.

 

 

 

 

 

 

 

 

 

I will fight.

Because he’s a fighter.

Because he made me a mother, he made me a better person.

And when I forget that, I have an amazing support system. E-mails and texts that tell me they “get it,” upbeat quotes that always come at just the right time, compassionate words from c0-workers. And friends like Owen’s Mommy who spent the better part of an awesome playdate listening to me sharing my worries and babbling about exercises and yadda yadda, this and that… all the while, she’s instictively helping Zack to stand, rolling a ball back and forth to him and making him grab things on his own, all the while making me feel like the luckiest friend in the world.

 

 

 

 

I love how Zack and Owen have this amazing bond together. How they sometimes babble in their secret language to each other, sharing toys now, touching arms and pants and feet with smiles. I hope they are always friends and I’m grateful at the comfort knowing Owen will have such a wonderful Mommy who will teach him in just the right way all about his BFF.

 

 

 

It’s funny how life works out, what happens when you’re not looking or thinking or planning. It’s funny how even at the worst of times, there is still that deep-down feeling that you still have it pretty good and things will all work out just fine.

 

 

 

 

 

 

 

 

 

 

 

 

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3 thoughts on “When your future walks by

  1. This post touched my heart more than anything else has in months. My son is 21 months old with Down syndrome, and I know exactly how you feel. I feel the same when I see an adult with Down syndrome, EVERY time. And then I feel guilty because I’ve worked so hard to live in the moment with my little guy. I felt the same before all of Aidan’s evaluations and consults. It’s weird how “normal” all of the appointments and therapists have become in my life. And everytime I build myself up for bad news, I realize that it’s just something we will handle as we have all along, since we knew about Aidan 7 weeks before he was born.

    I appreciate your blogs and your honest writing.

    Like

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