What a gift!

It's been a while. I haven't updated Christian's blog in almost 10 years! So much has changed. And I'm heartbroken that I'm here announcing that Christian went to heaven on February 8, 2025. He was such a gift. The greatest love we might ever know on earth. We celebrated his life Saturday, March 1, 2025 in a movie theater - a place we loved to go as a family that had plenty of room for his wheelchair and plenty of screen for him to see. It was beautiful and it honored him in the best way with people remembering and loving him. 

I started his blog because writing was the way I could update everyone about Christian's progress and writing was healing. It also allowed me to connect to others across the country and meet other families with kids like Christian. This blog also became a reference to other families who came after me. If you're reading this, I'm honored if Christian and the words in this blog were ever a comfort or inspiration to you.

I used writing to heal from a life flipped upside down by a tragic event. I supposed I'll use writing as a way to learn how to live yet another new life without Christian in his physical body here on earth. Taking care of him every day of his life was like taking care of myself. It was automatic, a routine, and now feels like half my body is missing. But I know he's still with us, in our hearts, in our memories. He is free now. Our little blackbird has taken flight. He is free.

I'd like to share what I wrote and said at his memorial. We love you forever, Christian.

I am not gone. Not really. I haven’t left you, not in the ways that truly matter. Close your eyes, and you will find me there. In the way your heart still knows mine. In all the things that made us - us. I have not gone far. I’m just beyond the veil of what you can see. And what’s absence, after all, but a trick of the eye? I am not where you can reach anymore, but I am where you can remember. Do not let grief turn my name into something heavy. Something you can’t speak without feeling the weight of loss in your chest. Let my name stay light. Say it as you always did, with ease and familiarity. You don’t have to move on from me, just move forward with me. I mean, I was just here. Right next to you. Don’t pack me away in boxes of sorrow, not yet. Speak of me like I’m still sitting beside you, like I never left, like I never could. Let my name live on in the moments when you laugh, when you love again. You don’t have to let me go, just carry me differently. Lightly. Gently. With the same tenderness that once held my hand. And when the weight of missing me feels unbearable, when you reach for me in places I no longer fill, remember this - I am not gone. I am still here, just not in the way I once was.

R. K. Nightingale

My Christian. What a gift! I’ve said this over and over. When I have no words and all the love and all the memories and all the tears get caught up in my chest, the only words I can muster are…what a gift!

God is so good. He was yesterday. He is today. He will be always.

This was always part of the plan. If you know the story of Christian, you know that he drowned on July 8th, 2009, he left to heaven, but came back when I said his name. We all prayed so much for him and for a miracle. Some might say a full recovery was the miracle but I disagree. Christian taught me miracles come in many forms and they aren’t subject to definition by humans or doctors. So that first night he lived. He had flat brain waves. But within 24 hours the brain waves were back. All over the place but they were back. And so he lived the second day. And the third. We were never pulled into a room or asked to consider making any life or death decisions. He just went on living and meeting every milestone to continue living. And that was the birth of my “new” son. A new Christian who I wasn’t sure even knew who I was as his mom. His entire slate had been wiped clean and we had to start from zero. But we decided then and there that we would make his life the best we could. And Christian’s journey commenced. What a gift!

For 2-3 years after his drowning, we pushed him hard. We attended various therapies all over the country, we pushed and pushed but there came a point where I wondered why we were doing this. It wasn’t overnight, but at some point early on, I accepted my son for who he was. He learned to smile again. What a gift! He learned to communicate with his eyes, with his voice. The miracles were in the soft, small, everyday moments. Christian couldn’t walk, talk, eat, or even laugh. But we had a soul connection we built. I knew him and he knew me. I spoke his language. He had health issues that kept him trapped in his body or set him back from progress he made. As the years passed I decided to focus on experiences in Christian’s life over everything. So that was the path. We were going to give him all the experiences we could.

We got a camper and hit the road. He fed goats at the Ostrich farm and we outran a monsoon at Picacho Peak. He felt snow in Point of Rocks, and took boat rides at Lake Pleasant. He floated on a Lily Pad in Lake Havasu and felt the wind in his hair as co-captain. He saw the snow capped canyons of the Grand Canyon and he saw the lights of Las Vegas. He felt the waves of the Rocky Point float over his anchor feet and watched the sun set over the ocean. We sat together and listened to Verde River trickle and flow while the fall leaves fell around us. We took night walks under the stars to scope out Halloween decorations and Christmas lights in the neighborhood every year. We laid in the sand, he got a front row seat to firework shows, and we loved to go to the movies. What a life we got to live with him. What a gift!

Did you know Christian was also a learner, a history buff and an advocate?! We read history textbooks, read about the constitution, finished reading five Shakespear plays, and watched NatGeo documentaries all day. I got to take him to see Hamilton and we’ve seen the play on his iPad probably hundreds of times. He appeared at numerous podiums from advocating to save Thornydale Elementary to passing bills at the governor’s podium at the state capitol. Not to mention, all of his advocacy work with multiple appearances in water safety and drowning awareness interviews from Crossfit to local news spots. For a kid who couldn’t walk or talk he sure created a lot of ripples in his life for good change. He was the greatest teacher. Such a gift.

I think when God sends us to earth, He sends us to love as much as we possibly can. We are taught to love best through the unconditional love for our children. When you have a child who can’t show love in the earthly, traditional sense you learn a much deeper, much more sacred love, must more intuitive love. You have to love each other in this way because it’s the only way in. And that love is so deeply embedded it cannot be broken. Even after death. When Christian went to heaven and I stayed with his earthly body, all I could say over and over was, “I love you. I love you. I love you. We were so lucky!” He was such a love. The love of our lives. So I encourage you, in honor of Christian, to love. Go into the world and love. Love your people. Love your own life. That’s what we are here to do. Love as hard as you can in honor of a boy who exemplified deep and true love. He never felt anything but love in this world. What a gift.

As I mentioned, this was always part of Christian’s plan. We always knew he’d have a shortened life span. As a mom of a child with severe and profound disabilities, I knew this and thought about it often, actually. When would be his time? Would it be a long and drawn out fight or sudden? It was rather sudden. But he gave us fifteen more years! What a gift. It’s profound, truly. It feels like a fifteen year portal has closed. I know anger comes with grief but I am not angry. How could I be? God gave us fifteen extra years to learn from and love this boy every day of his life! Of course, I wish there were more. But that’s selfish me talking. No anger here. Just a soft and slow sadness and longing to give him the overflowing love I still have. And an immense amount of gratitude that I got to be his mom and that I got to witness this boy day in and day out experience life and defy the odds. It has been the honor of my life.

I picture his ascension to heaven. I picture his soul leaving his body, stretching up and out, stretching his arms and legs, hands and feet, like the genie being let out of the lamp. I picture him smiling and laughing and seeing Jesus’ face, and running toward that warm light. How could I expect him to want to stay? The day after Christian went to heaven I still hadn’t slept. That afternoon I finally closed my eyes for a short nap. As I was coming out of sleep and in the middle of sleep and being awake, I was still in a dream. I was opening boxes that resembled his food boxes and I heard the voice of a teenage boy. He said, “It’s pretty here, Mom.” And I woke up and I knew it was him. 

Christian, I will look for you in everything beautiful. Every sunrise and sunset. Every star. Birds singing. Butterflies, hummingbirds, beautiful days, the smell after it rains in the desert, snowfall, late afternoon sun on the water. You are all around me. Mom loves you forever. What a gift.