My beloved Titus,
I hope you are well. I miss you. And that is not a light-hearted sentiment… it is a soul-stirring, gut wrenching “miss”. Nothing feels like its in place now. You have gone away and now a big piece of me has too. I’m making it through the days, but many with tears just beneath the surface. So much of me is feeling incomplete, uneasy, always alert… like I’m in search of something that is missing because of the nagging feeling that I’ve lost something. Or someone. And I have… I lost you.
I know, I know… not entirely. Your memory, your joy, your eternal life… those things are not lost. They are alive and well. I’ve had glimpses of you through others. One person shared she had a vision of you playing with a lion, skipping across rocks in a river. You were having so much fun! You made your way back to your home where a feast was waiting for you and Jesus was your dinner guest. Hearing this from someone else made me so emotional. I took peace in it but it was also weird. And so unnatural to not be a part of your life now. To not know what you are up to. To not get the daily report from your teacher or brief paragraph of the day from your nurse. To not be by your side every moment, close enough to take care of every need as it comes up. To not be able to take in your laughter, your smiles, your bundle of energy. That was all so much a part of me, Titus. And its all still so ingrained in me, but you are inaccessible. This incompleteness in me makes me incredibly aware of my brokenness and as a result, so aware of the brokenness around me. It’s heavy. There is too much hate in this world, too much death, too much pain and sickness. And none of it is okay in my heart. All of it needs to be reconciled, but it feels too deep. Lets just be as honest as it gets… I am lost. I feel like a soldier returning home from war attempting to make sense of civilian life under a new me. So I stand here wondering whats next then? If I, if we, must live in this pit of brokenness, what is next for me, for your dad, for your brother in that pit?
Titus, you made me smile so much. I still look at your photos all over our home and see old videos of you and I laugh and smile, feeling so much pride and joy! You are my son! And then it hits me that I can’t turn around and see you standing or sitting behind me. And honestly son, that still takes me aback. Because I truly can’t believe that soul of yours, that crazy ball of energy, was snuffed out of life here on this Earth. It doesn’t seem possible. I left the house this morning because it was too quiet. Inside me the jagged edges of my heart were screaming for attention. I found myself beside a quiet bubbling stream, having a cup of coffee and writing this letter to you. It’s not very eloquent, but it’s all that is screaming inside coming out. It’s my honest search for the re-building I hope and pray God will do in me as I stand lost and broken, knowing and trusting that in this pain lies His power and love and grace.
I’ll end with this… a glimpse into the amazing memorial service held for you, son, just a few short weeks ago. These are the words God gave me to share in your service. I love you, son… And I’m so proud to be your mama.
“My baby has been gone for nearly six weeks now. I still hurt so bad. I miss him and have never felt so unable to fix and heal. My arms were meant to hold him, comfort him, love him and now they are empty. And the ache is worse than anything I’ve ever felt. I don’t understand why. There is so much conflict in my soul.
The relief that Titus doesn’t have to battle anymore.
The agony to not be able to hold him again.
The joy when I picture his huge smile and hear his infectious laugh up in heaven.
The gaping wound in my heart that will be open for the rest of my time here on earth.
The anger that my child had to even fight such a battle in the first place and had to face death at 6 years old.
The gratitude I have and pride I feel to have been his mom all of these 6 years.
“Dance with Jesus, my sweet boy…” those were my last words to him before they took him away.
I’m jealous. I would’ve loved to be right there with him, to see him transform whole again. To watch his ushering into eternity. When I think about Titus departing this world and starting life in Heaven, I don’t imagine my son waking up in front of a pearly gate with chubby baby angels flitting around. For some reason, I always imagine a huge train, operated by a Tyrannosaurus Rex engineer, pulling up beside him. The train is full, my gramps, my grandma, perhaps other kids who fought a similar fight, all on board to welcome Titus. And as the train stops in front of Titus, the train conductor steps out. His eyes, his voice, everything about this man is familiar to my son because he has been with Titus through his valiant fight here on earth. And before the words “all aboard!” can slip past Jesus’s lips, Titus runs (yes, runs!) headlong into Jesus’s arms. Jesus even perhaps cries happy tears as he sees my son restored to wholeness again- exactly as he was meant to be. Titus’s face mirrors Jesus’s own joy, his smile taking over his face, eyes sparkling alive and blue with a patch of brown on the left side. And just before he flings himself into Jesus’s arms, Titus does a celebratory somersault, effortlessly rolls back up to his feet and jumps into the arms of Jesus. Titus and Jesus jump onto the train where big Titus-sized hugs are given out to the community of love surrounding him. The t-rex takes them on a wild train ride, one that might resemble Roger Rabbit’s ride in Toon Town and Titus’s reaction being similar to what it was in that ride, clapping, stomping his feet and cheering at the top of his lungs with a vibrant smile on his face.
I have learned so much through my son. A few years ago, I decided to start writing a letter to my boys. I thought I’d add on to it as the years went by and when they graduated, they would have a letter of Gods story at work through them. I thought these letters would be for my boys… little did I know that through the letters I wrote to Titus, God would remind me of his redemption of all things broken.
In one letter, long before Batten entered our lives, I told Titus, “life hasn’t been easy for you. But even through your struggles you demonstrate pure joy! I keep using that word to describe you because I can’t explain my little Titus any other way. You are joyful! Titus, I want you to remember this… the joy you demonstrate daily to us, is God in you. We don’t have this joy out of nothingness. It comes from God and he is so good to give us this gift through the good and the bad.”
My next entry came after Titus started having seizures. We did not know what we were dealing with yet but we knew his road was difficult. I shared, “I want you to know, son, that even in the midst of your trials, you don’t have to wait until you feel better or things are all going normal to shine or succeed. You’ve already proven to us that perseverance is totally worth it and we can’t stop living life just because different issues come up. God is using your story to teach others about strength in HIM and to open my eyes to the brokenness around us.”
The final entry I wrote to him followed our move from Illinois to California. It was a huge transition getting all things medical, work, school, etc… re-established. But once again, God was so faithful and I needed Titus to know how much he was loved. “Titus, you are SEEN by God! He loves you. You have never been lost on him. We are nearing our 1 year anniversary of your first seizure and I am in awe of the way we have been carried through this time by God. God has created you to be amazing Titus and he will always be faithful to carry you through.” I was in awe then at the tribe that rose up around us and I continue to be in awe.
The countless ways we’ve been loved by God through all of you and thousands of others…. It’s so humbling because… well, really, who are we to receive such unconditional love? And it makes me wonder, why? Why are so many people joining us in this story? One of such pain and heartbreak?
God has shown me that Titus’s story is about so much more than a little boy fighting a Batten disease battle. It’s about all of you, too. Being invited into Titus’s story invites us into something so much bigger than ourselves. It’s being invited into brokenness. And, oddly, everyone craves that. Because that’s where we can be real. When we are willing to recognize that we are ALL broken, walls are torn down and the real work begins. This is the common ground on which all of humanity can meet. Brokenness under the shadow of Gods gracious wing can be life-changing, transformational. Healing.
Healed…. That’s what my little boy is today. And so, as his mom, I’m not going to get stuck on the why question, but rather I’m going to ask “what next?” God gave me the gift of being mom to an amazing little boy and he will be a part of our lives as much in the future as he was in our past.
Thank you, Lord, for this gift. Let us run toward this heartache and pain opening it up for you to breathe into as we watch you redeem. Turn mourning into dancing, ugly into beauty, and allow us to carry on the legacy Titus left behind of strength, perseverance, love and joy only found in you.”
Thanks for listening,