Hannah & Gage "Love Him Unconditionally"

Photography by Randy Bacon

There’s this boy. I’m completely head-over-heels for him. He has a way of capturing hearts with his smile. He is my first-born son.

My husband Evan and I welcomed Gage into our lives on my thirtieth birthday—the most amazing gift I could have hoped for! Shortly after his arrival and a brief stay in the NICU, we were thrilled to be home with our baby boy. That’s when we got a phone call with results from some blood tests, confirming the doctors’ suspicions and our fears; Gage was diagnosed with congenital cytomegalovirus, more commonly known as CMV. Except it’s not commonly known at all, which is not to say it’s not common. I’ve seen CMV described as “the most common virus that no one’s ever heard of.” Before Gage’s diagnosis, I was in that group of those who had never heard of it. More than half of adults over age 40 have been infected at some point in their lives, and it’s very prevalent among small children. For most, it presents itself with symptoms similar to the common cold. But when an expectant mother gets a primary infection during pregnancy, like I did, the virus can be passed to the baby and is much more dangerous.

Although there are some simple steps that can be taken by pregnant women to reduce the risk of a CMV infection, like frequent hand washing and not sharing drinks with young kids, for some reason it’s just not talked about much. At an initial prenatal visit to your OB, you’re sure to be warned about the dangers of cold lunchmeat and instructed not to change kitty litter, but far less likely to hear even a mention of risks posed by CMV. Ironically, there’s another virus threatening expectant moms that nearly everyone has heard a lot about in the last year or so, although it is far less common than CMV. The Zika virus can also be passed to a baby in utero and, like CMV, can cause microcephaly, or small head/brain size. Increase awareness about CMV is needed, and I’ve found that The National CMV Foundation website is a fantastic resource and wealth of information.

There’s a very wide range of outcomes for kids with CMV. Some may be asymptomatic while others have initial delays but end up being typical later in life. Some may have hearing or vision loss, while others are severely disabled and face a variety of other challenges. It can take on many forms and presents many challenges.

The early days with our sweet baby boy were filled with frequent doctor visits, weight checks, blood draws, hearing tests, ultrasounds, therapy, and medication. They were also filled with plenty of snuggles, 3 am feedings, dirty diapers and hearts bursting with so much love for a tiny person we’d just met. Since day one, I know that Gage has been in good hands by those caring for him, whether it’s us or doctors, nurses, therapists, sitters, etc. Most importantly though, I know that he has never left the hands of God, the ultimate caregiver.

Our journey with Gage has challenged and strengthened my faith and brought so much joy into my life. At first, I was blindly optimistic, thinking Gage would outgrow all of his challenges and end up being a regular kid given enough time. There were also times that I was filled with worry and fear when I read the worst-case scenario stories about other kids with the same diagnosis. Since he was my first baby, I didn’t realize right away that Gage was much different than any other child. I think that’s partially because newborn babies don’t do all that much and because I loved him unconditionally and didn’t notice any imperfections or flaws. I feel like that’s the way love is supposed to work.  That’s how God looks at all of his children—with a love that first and foremost sees our best qualities. However, as months passed and Gage wasn’t reaching developmental milestones, it became more obvious that his future would look a lot different than that of a “typical” child. As my eyes were slowly opened to this reality, I slipped into a slight state of depression. I struggled to balance denial and hope, not wanting to be unrealistic about what Gage could achieve, but wanting to keep believing that we could have the best possible outcomes. Luckily, I have an amazing support system of friends and family who helped lift me out of a dark and lonely place. I also have a loving husband, who just so happens to be the world’s greatest dad.  He has been my rock through all of our ups and downs. Learning and growing in faith, I’ve realized that the “best possible outcomes” may look quite a bit different than what we originally expected.

Gage is now 2 ½ years old. He doesn’t walk or talk. He only eats pureed foods and he still drinks from a baby bottle. He can’t sit up independently or use his hands very well. But he has that smile that can melt your heart. His giggle and belly laugh are absolutely contagious! He loves music, dancing and swimming. The first time he mastered rolling over on the floor, I cheered so enthusiastically you would have thought he’d landed a back flip. Gage’s milestones are very different than most kids, but I can say with certainty they aren’t any less celebrated. I feel so very lucky that he is part of our lives. I love the fact that he is able to express his happiness through smiles and laughter. Without a doubt, I am now more patient, empathetic, and compassionate than I’ve ever been. Of course, I still have many, many flaws and will continue to be a work in progress. But I’m grateful for the ways that I’ve changed since having Gage. I can remember a few years ago, praying for God to give me His eyes—to help me see people the way He does. It caught me off guard that becoming a special needs parent is how that prayer was answered, but I’m thankful. Even though sometimes it’s hard and really sucks, I’m thankful. Even though I’ll never stop wishing things could be easier for my son, I’m thankful. Even though I get extremely frustrated sometimes that Gage can’t tell me what he wants or what’s wrong, I’m thankful. I’m thankful that we get to be his parents and have him as our son, no matter what that looks like.

The blessings from Gage’s life don’t stop with Evan and me. One of my favorite things about him is the way he charms nearly everyone with whom he interacts. He is loved by so many and has a special place in the hearts of several friends and family members. He can make an impression on people who’ve only known him a short time.

Last fall, we started sending Gage to daycare a couple days a week and I was apprehensive about this, to say the least. One thing that puts me at ease is that so many of the teachers and staff members have expressed how much they enjoy Gage. One even stopped me in parking lot as I was loading him into the car one afternoon to say that seeing his smile always makes her day. When I drop him off in his classroom, it warms my heart to hear the other kids greet him by name when he arrives. As proud as I am when Gage reaches a new milestone, it doesn’t compare with the pride I feel witnessing him impact others in a positive way.

God has been so faithful through each step of our journey. Our amazing boy has accomplished so much and overcome one challenge after another during his first couple years. Shortly after celebrating his second birthday, Gage became a big brother as we welcomed Caleb, a happy, healthy baby boy, to our family. Along with baby number two came another answered prayer. I became a stay-at-home mom. As much as I loved my job and all my incredible coworkers, it’s something I wanted so badly for a long time—a deep desire of my heart that I was afraid to even speak out loud at first for fear that it wasn’t a possibility. Now as I spend my days with my two sweet boys, I get so much joy from the little things. I love the way they share smiles and play together. Bath time is an absolute blast. Walks at the park and dances in the kitchen are part of our regular routine and I adore it. I don’t know what the future holds for us, or what Gage’s outcomes will look like down the road. I anticipate facing more challenges and tough times. But I’m also hoping and believing that we’ll experience more joy in the days ahead than we can even imagine.

Story Update: 10.23.19

When I first wrote our 7 Billion Ones story, my son Gage was just 2 years old. That seems like just yesterday, but now Gage is 5 and in kindergarten! I was in denial about it right up until I loaded him onto the bus for his first day. We’re now a few weeks into the school year, and he is doing amazing! I couldn’t be more pleased with his teachers, paras, school nurse and all the others caring for Gage on a daily basis. But what I love most is how much joy Gage experiences and exudes, no matter what the setting.

I shouldn’t be surprised, because Gage has shown me over and over again how that’s just the person he is. Even without words or the same physical abilities as others, Gage has a way of letting his light shine. The other day when I picked him up at school, another kindergartner stepped out in the hallway to say hi and give Gage a high five. It was so sweet and the perfect reminder for me that having Gage out in the world can be a win for everyone! Transitions to new schools or different therapy schedules haven’t always been easy for me, but Gage seems to take everything in stride.

These days, in addition to his time spent in school, Gage also does aquatic therapy and hippotherapy (riding horses) each week. He loves the water so much, he can hardly contain his excitement in the pool. Although hippotherapy got off to a rough start last spring, now Gage loves riding Johnny Cash, the pony in black. Over the summer, he worked hard during a session of intensive OT with no complaints about the grueling schedule – 3 hours a day, 5 days a week for a whole month. Gage also goes to speech therapy twice a week to help him further develop his skills with his communication device – a system that tracks his eye gaze so he can make selections on the screen. I’ve loved to witness his communication continually developing, whether it’s through gestures, technology or simply his sweet, infectious smile. He’s growing up and becoming more independent, and I couldn’t be more proud.

I’m doubly blessed in the proud mama department with Gage’s little brother Caleb. He’s three years old and full of energy and imagination. He’s clever and funny, and even at his young age, his compassion is one of my favorite things about him. He’s always had a special bond with his big brother “Gagey” and I look forward to seeing it grow throughout the years. Caleb goes to school a few days a week and loves all his teachers and friends there. Raising our two boys with my awesome husband Evan brings so much joy to my life.

Our first 7 Billion Ones story was called “Love Him Unconditionally,” a title chosen by editors from one of the lines I wrote. It seemed to fit perfectly that love was the underlying theme of that message. I wouldn’t describe the life we’re living as easy, but feeling an overwhelming love for my boys has never been difficult. If I could choose other common themes to resonate from our story, my desire is that joy, peace and hope stand out. Those aren’t always as easy to come by as the love that bubbles up inside me, but over the last few years I’ve tried to intentionally focus on these things.

Like I mentioned earlier, Gage exudes joy in so many scenarios. Whether we’re folding laundry or knocking over stacks of Legos, his squeals of excitement are contagious. I’m so grateful for the joy he experiences and brings to me and others. Where the effort comes in for me is remembering that joy can be present even in the midst of the challenges. That just because something is hard doesn’t mean it’s not good. And that it’s ok to let myself feel an overwhelming sense of joy and truly savor it, without waiting for the other shoe to drop.

It’s so tempting to be overcome with worry. We live in a world where so many things are out of our control and it’s hard not to think about what’s coming next—what other struggles lie ahead. Things will get harder as Gage gets bigger and his equipment does too. I dread the day when he’s not as easy to lift and carry. I don’t want the world to be a harsh place for my sweet boy, but I realize peers and strangers might be less accepting and kind as Gage gets older. The fear I must combat the most is that something terrible could happen, and I won’t be able to go on. The only way I know how to get past unending fears and worry is to pray for peace. With a peace that comes from God, a supernatural peace that passes understanding, we can face each day as it comes.

Focusing on peace and living in each day allows me the freedom to hope. I’ll never stop hoping for the very best for my boys, but I also don’t want to be unrealistic. About a year ago, I realized just how cynical I could be. I called it skeptical, but I realized that attitude was keeping me from being willing to try things and figure out what worked best. It was easier to just dismiss something that I assumed wouldn’t work, than to get my hopes up and be disappointed. What I’ve learned is that there are no magical solutions or quick fixes. Everything we work toward comes with a lot of effort and often trial and error. Gage is perfectly willing to put in the hard work. Since that’s the case, then as his mom, I should be brave enough to hope for the best outcomes and at least give him opportunities to succeed or fail.

When I met Randy at our first photo shoot, he said something that made such an impression on me. He said that everyone has a story to tell and you never know who needs to hear yours. That was a huge encouragement to me, because sometimes in sharing, especially when you’re being real and honest, it’s scary. We may be afraid of being judged for our authentic feelings, or worried that people will pity us when we admit that things are hard. But it’s also an opportunity for creating greater understanding and making connections that we’d miss out on otherwise. Gage has such a light to shine and so much love to share. My prayer as his mom is that I will not only be able to find the best ways to take care of him and make good choices, but I never hinder him from sharing and connecting with others.

Hannah and Gage's Story brought to you by

Abilities First believes that by ensuring that people have opportunities to use their abilities, we can make our community better for everyone. Abilities First uses public and private funds to support the choices of individuals with developmental disabilities in Greene County to live, work, play, be active, and productive in meaningful ways for our community. For more information about Abilities First and its programs, go to www.abilitiesfirst.net or call 417-886-0404.

Abilities First operates programs which support and create community opportunities including support coordination for people with developmental disabilities of all ages through First Steps (birth – 3 years) and The Next Step (3 years – over). Art Inspired Academy provides an inclusive experience for people with and without disabilities to participate in creative arts like theater, music, dance, and art. Abilities First has two retail businesses: Inspired Boutique is an upscale resale shop featuring women’s clothing, accessories, furniture, and antiques, and Art Inspired, a retail store and gallery highlighting furniture and home décor items created from recycled paper and artwork from visiting artists and Academy students. Both stores offer competitive job opportunities in inclusive work environments