Today is Becky’s 1st birthday.
As I’ve been thinking about this day, a Chinese proverb comes to mind: “The reward for hard work is more hard work.” I don’t know much about Chinese proverbs. I’ve never read any, save the ones tucked inside Panda Express fortune cookies. Years ago, I came across this one in a devotional and it has stuck with me. Because it’s so true. “The reward for hard work is more hard work.”
That perfectly sums up year #1 with Becky.
Here are my random thoughts and reflections on this very special day.
Sometimes I wonder if people notice. Because sometimes I don’t see it. I don’t always see Becky’s Down syndrome. When she was first born, I would stare at her for long periods of time in the NICU, looking for specific features. While her cardiac condition was the tell tale sign, I couldn’t see her heart and she didn’t begin showing signs of respiratory distress for several months. The official genetics report was outstanding for days so there was a minute possibility that she was chromosomally normal. And then I saw this picture.
I hate this picture.
Hate it. Hate it. Hate it.
It was the first time I saw Becky’s Down syndrome.
Late one night, I lay awake in my hospital bed, too weak to move but too alert to sleep. Sam had briefly found a comfortable position, his 6’5″ frame tottering on the edge of a narrow couch. So I scrolled through pictures on my phone, trying to piece together the events from the first days of Becky’s life. I had taken the shot in the NICU while Sam repositioned Becky one morning. When I saw the picture, I wanted to delete it but battled with my drugged-up self to keep it. I knew that it was an important picture and I would need to see it over and over again.
Somehow, looking at this picture helped our new reality to sink in. Becky’s arms were dangling at her side because her body simply had no strength to lift them. It was proof positive that our child was not normal. And there was nothing that I could do about it. In this moment, reality hit: We have a special needs child. She can’t lift her arms. She can’t breathe without support. And I have no idea what the future holds.
Looking back on the past year, that is what I am the most grateful for. Not knowing. God gave us the basics, a general contour to our future life. We knew Baby Ocho would most likely be born with Down syndrome and that she had congenital heart disease. That was it. If I had known any more, it would have knocked me down and paralyzed me. The gentle unfolding of Becky’s vast needs has been God’s grace in motion.
The stats from the last year are staggering: 2 open heart surgeries, 1 abdominal surgery, 1 ENT surgery, 7 emergency room visits, 6 hospital admissions, 3 extended stays for me in the Ronald McDonald House. I tried to count her lab tests, x-rays, and echocardiograms. I gave up when I scrolled past page 20. Our little girl has been through so much. It has been heartbreaking to watch. But there is beauty in suffering. And immense privilege in standing by her side.
1 year later, we have pictures like these. A friend did a photo shoot for us just last week. Amazingly, Becky began to sit unaccompanied for longer periods just in time for these photos. She was ready for her close up.
Over this past year, I’ve grown more accustomed to people watching us. Our family was already a three ring circus but Becky adds something more. I remember the first time we took her to Mass. It was quite the production with all of her equipment. After I received Communion, Father paused, took down his mask, and asked, “What is your baby’s name?” I said, “Becky”. He responded, “I will be praying for Becky.” The same scene repeated itself in the parking lot. A woman approached Sam as he was strapping Becky into the car seat. She wanted to know the baby’s name and assured him of her prayers for Becky.
As we drove home, it finally dawned on me. Becky looked sick to other people. The medical tubing hanging from her baby blue bunny pajamas. The nasal cannula resting on those juicy cheeks. The canister of oxygen nestled in a clear backpack slung over Sam’s shoulder. We had stopped noticing those things. They were part of our new normal. But other people could see her needs.
I realize now that when I look at other people, I tend to see the differences first. My imagination runs wild as I try to piece together a life for the person based on physical clues. I suppose people now do the same for our family. So I just put it out there. I tell people that she has Down syndrome. I give them a few tidbits about her medical history. I appreciate how people respond, the curiosity behind the questions. Even from behind a mask, I can see the smiles, notice the softening of the eyes. Sometimes I hear the person take a deep breath. Somehow, these day-to-day interactions with strangers encourage me to keep doing the hard work of caring for Becky.
Reflecting on the past year, I can tell you that is was nothing like I imagined. It has affected our family in ways different than I would have predicted. A day rarely goes by without a doctor’s appointment, phone call, or therapy. That commitment has affected my other kids. I simply don’t have the same time for them. I certainly don’t have the same energy. I’m much older now than when the older kids were little. I feel those aches and pains. I struggle with the fatigue. That’s hard. Because I want to be the best for each of them. And many days I’m just not.
But the Rowdy 7 are a resilient group. I stand in awe of each one of them. They have embraced Becky with open arms, proud to show her to the world. They each claim her as their favorite sibling. There is an ongoing argument over who gets Becky when Sam and I die. It’s really rather charming. They have asked tough questions, unafraid to voice their feelings and perspectives. How long will Becky live? What will we do when people make fun of her? Will Becky have Down syndrome in heaven? Can we get a handicapped parking pass? Can we give her a taste of mustard yet?
Having Becky has been a challenge for Sam and me. I’m not afraid to admit that. There is little time to attend to everything with the kids. We try to carve out time for each other. But we spend most of it discussing our family and hitting Home Depot. When Johnny was born, we had both turned 40. We restarted life and enjoyed being the old parents at school events. People think we know things. With Becky’s birth, we were approaching our late 40s. We have now rebooted life and have a very uncertain future, a path different from most people. But those vows spoken 25 years ago and the grace of the sacrament keep us moving forward. Imperfectly many days. But together.
I stand in awe of the medical community and the army of doctors, nurses, techs, and therapists who have joined Team Becky. I count many of them as close friends. I remember talking with Dr. El-Zein, one of Becky’s cardiac surgeons, late one night in the PCICU. He had stopped to check on her before going home. I thanked him for his work, telling him that I was in awe of what he and Dr. Vricella had accomplished in rebuilding her heart. Never taking his gaze off her, he gently patted her head and responded, “With God’s help. With God’s help.” I am thinking of all of these people, and moments like that, in a special way today.
Babies Charlotte and Sterling, as well as their parents, are never far from my thoughts. Their lives brought such meaning to mine. I am forever grateful for Maggie and Tim, Maddie and Kingsley, and our time together in the Ronald McDonald House. They never stopped caring for Becky and hoping for her positive outcome despite their devastating loss.
I would like to thank by name each person who has accompanied us this past year. But I would risk leaving someone out. We have been sustained by the love and support of our families, friends, and community. The meals. The childcare help. The rides for kids. The phone calls. The texts and emails. It leaves you humbled to be in such need of support. But it opens your heart to the most incredible friendships. Becky has enriched our lives in countless ways.
Now, dear Becky, we move forward into year #2. The hard work continues. But it is not without its joy. The rewards of simple moments and incremental growth. Smiles and coos. Cuddles and babbles. As your sister Greta observed, your delayed development just means we get to enjoy each baby stage a little bit longer. And to let the anticipation for your next achievement build.
We celebrate this 1 year mark, full of gratitude for God’s blessings, in awe of your miraculous heart, and brimming with hope for your future. The journey continues. This year, you will learn to walk. Then we will dance.
And when you learn to talk, we will sing.