Becoming a parent changes your life, that’s for sure. In ways that can’t really be explained or imagined. Definitely for the better. Becoming a parent to a child with special needs comes with a whole new set of changes. Changes that may come more slowly or all at once. Changes that may be more surprising and completely different than expected. And still, absolutely for the better.
After a few months of wedded bliss, my husband Evan and I decided to start a family. We delayed it just long enough to squeeze in a few vacations, but then 
it wasn’t long before we were hugging in the bathroom, staring at a stick on the counter with mixed feelings of excitement and disbelief. There’s something so fun about sharing something with only your husband for that first little bit. Like you’re both in on the best secret that you can’t wait to share, but feel a little sneaky having it just between the two of you.
That first bit of excitement was soon replaced by a day filled with bleeding that turned into a week filled with tears and then another stick laying on the bathroom counter with the opposite results. Although we hadn’t gotten very far down the road, there still seemed to be such a sense of loss. I remember Evan asking me what he could do and my response being that I didn’t need him to do anything, I just felt sad. There wasn’t a magical fix, but I’m grateful for his unending support, no matter what the challenge. Ultimately, I think it made both of us realize just how much we wanted a child, whether or not we felt “100% ready.”
Before long, we were back in the early stages of excitement and after seeing the doctor, sharing our secret with family and friends. Everyone was very excited, but no one more so than the two of us. I remember having a fairly easy pregnancy – a bit of nausea at the beginning, a HUGE appetite 
throughout, and some discomfort and trouble sleeping at the end, but overall I’d say I had it pretty good. After the 20 week ultrasound, we were expecting a healthy baby boy, who even gave us a thumbs up that the tech caught on camera.
Evan happened to be with me at an appointment when the doctor instructed me to come to the hospital when it was difficult to walk or talk through contractions. The night I went into labor, I practically had to beg for a ride to the hospital. Evan kept asking me, “Can you walk? Can you talk?” and when I replied yes, he would say, “Then it’s not time to go yet.” This resulted in us waiting to finally go until after 1 am and we had to use the emergency room entrance. I made the mistake of refusing a wheelchair not knowing just how far away labor and delivery was.
From that point, things didn’t take long at all. We were checked in shortly after 2 am and our sweet baby boy arrived at 4:01 am. I wanted to shout it from the rooftops, but Evan kept reminding me that everyone we knew was 
sleeping and we should wait to send out the news. We got a few blissful minutes of cuddling and oooohing and aaaahing over our tiny boy…just 5 pounds…much smaller than anyone expected. Then the nurses returned to our room to check his blood sugar and said it was low. They also pointed out the petechial rash covering his face, saying it could be the result of such a quick delivery, or could be something more. They seemed to whisk Gage away to the NICU to be looked at more closely and I was left feeling sad and lonely without my new baby to hold.
He wasn’t admitted to the NICU for the first night and stayed in our room. The first day and next morning, we got as much skin to skin time as possible and did frequent feedings to try to keep his blood sugar up, but when his doctor saw him on day 2 he insisted that the NICU was the best place for him. In hindsight of course he was right, but I remember thinking that Gage just needed a little more time to prove himself and he would be just fine. That was an early lesson I learned that sometimes it’s best to trust in the doctor’s judgement. We went to the NICU to listen in on the doctors rounds after they saw Gage and I remember questioning every choice they had made. One doctor looked at me and said “You’re bummed out, aren’t you?” and I just stood there silently for the rest of the time with tears streaming down my face.
Gage was very well cared for in the NICU. The doctors and nurses there are simply amazing and seem to never leave. Maybe we just lucked out with the same people having consecutive shifts for our stay. We spent most of our time there by his side, and Gage had several visits from family and friends. At one point, Evan went to sneak in a nap back in my hospital room. When a nurse 
came in, he lifted the sheets and asked, “Oh, do you need to check me?” He reported that she looked totally freaked out and left the room as quickly as possible. I reminded him that not everyone would appreciate his odd sense of humor, but I adore him for it. He has a way of being the calm in the storm. He’s definitely my rock through all of our ups and downs.
We had a relatively short stay at the hospital. Once Gage could maintain acceptable levels for his blood sugar, oxygen and body temperature, we transitioned to a night in a room near the NICU, and then were discharged to go home. The ride to our house seemed like the most dangerous trip I’d ever 
taken in a vehicle! I remember yelling at Evan to slow down and he looked at me and said, “Hannah, I’m going 25 miles per hour.” I blame my crazy behavior on the fact that I hadn’t been in a car in almost a week and our precious cargo.
Later that same day, we got a call from one of Gage’s NICU doctors saying they had got back results from his torch test that showed antibodies for CMV (cytomegalovirus). This was the diagnosis that all the doctors and nurses were anticipating, but for whatever reason, I thought they would be wrong. The doctor who called reassured us we had the best pediatrician that we could find and Gage would be well cared for. That phone call was followed by a visit to the pediatrician where an ultrasound of Gage’s brain was ordered. While the ultrasound was taking place, I remember asking the tech how things looked and she refused to offer any information, but said the doctor would read the results. In the back of my mind I could sense that it wasn’t good news, but I was so in love with my adorable baby who seemed to be loving every minute of his “head massage” that I brushed it off. We were at home when our pediatrician called us to share the ultrasound results, which showed several calcifications on Gage’s brain. I remember standing in our backyard with the call on speakerphone so both Evan and I could hear, and instantly crying as he shared the news, while Evan wrapped me in a hug.
From there, we started Gage on anti-viral medication and had to get blood draws every two weeks to make sure there were no negative side effects. We closely monitored how much he ate and his weight, and were referred to a variety of specialists, including the audiologist, ophthalmologist, and neurologist. We were very lucky that Evan still had a few weeks of summer break before returning to work, so we could both be there for many of the initial appointments. The hearing and vision tests yielded positive results and we celebrated every single ounce he gained. The neurologist appointment was one of the first ones I went to without Evan and that was rough. Unlike other appointments where there was a definite answer (Yes, Gage can see. Yes, he can hear. Gage has gained this much weight and is now measuring this long) that visit addressed so many more unknowns. The doctor kept using the term “brain damage” saying how severe it was, and it really upset me.
But through everything, we’ve got to enjoy a beautiful, precious, and happy baby boy. The joy of a new life coming into the world is completely indescribable, no matter what that life looks like. Becoming a parent is the closest thing to experiencing unconditional love that we’ll ever be able to comprehend. Although things were far from perfect, I couldn’t help but be absolutely head over heels for my baby boy…soaking in every second of this precious gift that God put in my life. It was hard for me to see his flaws, even when others, whether medical professionals or friends, noticed them easily. I remember a friend commenting at one point how great Gage’s coloring looked, and thinking “what is he talking about?” In my perspective, he always looked fine. Looking back at earlier photos, I could then see exactly what he meant, but in the moment, I just saw someone I loved in a way I’ve never experienced before. I think that’s the way we are meant to see all people, and the way God sees all his children. I’m so grateful to get to be on a journey of learning and loving as we go, and can’t wait to see the way God will use Gage and us as his parents as we walk this road.
another thing to add to his list of challenges. It seems silly, because the way you describe his condition doesn’t change anything about his challenges. Whether or not the doctor officially called it CP has no effect on how Gage struggles to sit, reach, eat, etc. He deals with all of those issues regardless of them having a name.
see him for who he is instead of what he has. When I get caught up in my desire for a diagnosis, I take comfort in focusing on who rather than what. Who Gage is and ultimately, who is in control. Not me, not Gage’s doctors, but an almighty God. I am also comforted by remembering who he is…a good, good father who loves all his children and has plans that are better than ours.