In Honor of Lila Claire

When you have a child with this diagnosis you are pushed overboard into an ocean that wants to swallow you whole while you desperately try to manage the unforgiving sea. 

You and your baby are both new swimmers trying to survive by treading water. It takes all the energy you have and at times you aren’t sure how much fight you have in you, however, you push through because your child is relying on you. 

A life raft appears and you muster up the strength to grab hold of it. You begin to roll the paddles and start to make gains. 

You quickly learn to deal with the choppy waters, the hot piercing sun, hunger, and exhaustion. 

Then a funny thing happens; you start to notice other people. You begin to realize even though each of you are in the same ocean, everyone’s life raft looks different.  Some have life vests, while others are still treading water. As you encounter others, you recognize that some of the rafts are newer, but other rafts are tattered-showing signs that their journey has been slightly longer or harder. 

You learn that all of you are trying to find the same destination. 

In the distance, there is a sighting of land. Sometimes the vision is clear, other times the cloudy conditions and storms make it difficult to see. 

There are moments when ask yourself “is this a dream?” Each person in the ocean has learned lessons and you all share your navigation tips for survival; where the dangers lie, where there’s  nourishment, what paths are easier to paddle through and which routes to avoid; always encouraging and cheering each other on. 

You notice sometimes you are leading the way & at times you’re following -learning from others, all in hope that each of you reach that destination that you see in the distance. 

This journey test all parts of you. It also teaches you lessons you didn’t even know you needed to learn. It requires you to reach into the depths of your being to muster up the strength, courage, and will to do what needs to be done because your precious blessing, depends on you. 

We each find that we are learning from some of the smallest warriors we have ever seen. They face adversity and push through many circumstances with strength like a giant. 

They fight the fight so that the future warriors have a better chance at battle. 

Lila Claire was one of my heroes. She was the niece I gained due to the diagnosis. She was one of what I like to call the 2012 Michigan trio; Mylah, Ameir, and Lila. 

Her smile was radiant as the sun. I am honored to have been a witness to her journey and blessed I had the opportunity to experience her. 

Lila’s  journey was her own, no two T18 journey’s are the same but Lila’s legacy is rich and will live on. Even though she is no longer present with us, her name will continue to make a difference for all the Trisomy18 Warriors to come and those still here. 

Kayse Jo, Sean, Wills, and Holden thank you for sharing Lila Claire with us. It was an honor to be a part of her cheer team.

Lila has reached her destination, her safe space. Those of us still in the ocean will learn from her journey. We will help our kids continue to break rules as Lila did. 

I pray Lila is amongst the angels (Ameir & others), existing with no restrictions, free from labels, in a place full of joy and beauty. We love you Lila Claire and thank you for what you were to Mylah & I. 💛 


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