Give Me Your Eyes

A few years ago on a missions trip I shared with some fellow travelers my prayer that God would give me his eyes and help me see people the way he sees them. I can’t take credit for the catchy phrase…it’s the title of a well-known song by Brandon Health. Each of the lyrics hit home to me as I sing along, but “give me your eyes” is more than just a chorus in a song to me. It truly was and is desire of mine—that my impression of people I encounter would not be clouded by my own judgement or that I wouldn’t just look the other way and ignore strangers I met, but I would see them with love as God sees them.

Fast forward a couple years and I’m sitting in a crowded gym at my niece’s district basketball game. I’ve got Gage in my lap at the top of the bleachers with a panoramic view of the whole gym. I notice a family walking through the doors  with a teenage daughter slowly and carefully taking steps across the gym floor. A couple things were apparent about this young girl—first of all that she had some sort of physical impairment that made walking challenging for her, and secondly that she had loving and proud parents who were patient and encouraging. They didn’t rush her along, but rather let her independently get where she was going. And they were there in the first place, when it might have been easier to just skip the game knowing how crowded it would be that night. For the next several minutes, this family had more of my attention than the game itself. I can’t really explain it, but I felt a sense of admiration and respect for them.

Reflecting on that, it dawned on me that perhaps my impression of that family and that teenage girl was an answered prayer. That maybe, God was giving me a glimpse of the way he sees. Before having Gage, I don’t think I would have paid them much attention. But in that moment, rather than quickly turning away to avoid gawking or feeling pity as I watched them, I could see the beauty in that moment. I imagined how proud that mom and dad must feel that their daughter could take those challenging steps on her own. I could appreciate the fact that she was not missing out on life, but participating in rooting on her team.

Sometimes God can catch us off guard by the way he answers our prayers. When I asked to see as he sees, I was definitely not expecting to achieve that by becoming a special needs parent. But without a doubt that has given me more empathy and allowed me to see others with more compassion and love. When it first occurred to me the ways my experience could shape me for the better, and when I began to feel grateful for things exactly as they are, it was a game changer. I feel loved and filled with joy in ways I can’t really explain, but I know the source of that love and joy is from above.

That’s not to say I don’t still struggle with the frustration of extra challenges. I want my son to be able to accomplish everything and get the most out of this life on earth, but sometimes his body fights so hard against him. As his mom, I want to know what’s wrong when he’s upset or uncomfortable, and he just doesn’t have the words to tell me. It can be heart wrenching to watch Gage struggle with his physical limitations, but I’m still overjoyed to be his mom. I’ll never stop being thankful to have him—just the way he is—as my son. My hope is that others won’t look at our family and feel sorry for us, but instead get a glimpse of the beauty and the joy that fills our lives.

“A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another.” John 13:34

Better Not Bitter

Having a child with special needs is a roller coaster of emotions. There are so many highs and lows, and it’s tough to constantly be teetering back and forth between moments of elation and celebration and those of sadness, confusion and fear. During the first few months of Gage’s life, it seems like we were constantly at one doctor’s office or another. I remember how excited I would get over each and every ounce of weight he gained. I would send out mass text messages to family and friends proudly announcing any weight gain, or happily reporting positive results from a hearing or vision check. But there were other appointments that made it harder to follow up with a good report. Visits to the neurologist sometimes led to more questions than answers.  Rather than leaving and sending a text saying “Gage’s brain ultrasound looks great!”, I was Googling things like “intracranial calcifications” and reading all the worst case scenarios.

The lows of my emotional roller coaster weren’t always caused by doctor visits. Sometimes the trap of comparing my child to other kids is why I ended up in tears. I found myself being jealous of the most trivial things that other kids could do, or having misplaced animosity towards other parents with typical concerns like teaching their toddlers to potty train or learn their colors. When I found myself struggling with resentment towards my other mom friends, I knew something had to change.

Every parent has challenges and struggles and I don’t get to feel sorry for myself or expect people to tiptoe around my emotions just because my child’s challenges are different than theirs. I realized that I need to feel all my emotions, but I get to choose how I let them affect me. My mantra became “better not bitter.” I don’t want to focus on the negative all the time. Although I can’t level out the peaks and valleys of our roller coaster, I can choose to look for the good things in our situation. And believe me, there are so many good things…snuggles from a sweet, sleepy boy…Gage’s “dancing” when I turn on the radio and he bobs his head to the beat…giggles and splashes in the bath tub with his little brother, just to name a few.

I shared my mantra with my husband, and he helps hold me accountable. He is my go-to person to vent to, because of course he gets it. But when I start to go on and on about something that bugs me, he’ll say “better not bitter” and totally call me out on the pity party I’m having. Obviously, I’m flawed and broken and have a long way to go. But I’d like to think that little by little I am becoming better and not bitter.
Better by being more patient, compassionate and empathetic than I used to be. Not bitter by letting go of trivial things I can’t control and by focusing on the positive and celebrating the joy found in each day. I know I’d be even more of a lost mess if I didn’t have the grace of God and the wonderful people he places in my life to help me along the way.

“Get rid of all bitterness, rage and anger, brawling and slander, along with every form of malice. Be kind and compassionate to one another, forgiving each other, just as in Christ God forgave you.” Ephesians 4:31-32

 

Becoming a Parent

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 vacationit 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 thumbs upthroughout, 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 brand new babysleeping 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 nicu diaper changecame 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 car seat 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.

sleeping Gage

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.