Merry Christmas!

 Merry Christmas to all!!

Mylah did really good with her Christmas photos this year! We didn’t even break out in a sweat ☺️. 

My last post was to honor our fellow Trisomy 18 sister Lila Claire. Since that post we lost Mylahs Big sister, Ava. Ava passed in September. It’s so crazy how life can change in an instant. 

We last saw Ava at Lila’s memorial, we were able to love on her even during our time of bereavement for Lila. That’s the ironic part about this journey; smiling and loving on one another usually occurs during a memorial service. They serve as in between reunions of sorts. Most of us gather once a year for the annual SOFT conference, but funerals/memorials are usually the other “unofficial” reunions. 

Toya and Ava

Lila’s Memorial-
Ava, her mom Billie Jo, Mylah & I 

Lila’s Memorial-
Us with Kayse, Lila’s mom

Losing Lila was hard, a little too close. Losing Ava was devastating because in this journey many times death is preceded by some sort of illness or hospitalization. Ava’s death was sudden and blindsiding. I never thought in a million years that our reunion few months prior would be the last time I saw her beautiful face. 

I think what made losing Ava more hurtful was that I didn’t get a chance to say “goodbye”. Travel issues and COVID prevented Mylah and I from being able to celebrate her life with her family. 

For this reason is why I’ve sort of shifted from getting close to new families in recent years. My heart can’t take the pain. We know what the statistics say but many are outliving the stats. We are proving that medical interventions are helping our children grow, develop, thrive, and live; so that’s why it hurts. 

I also have survivors guilt. This year I’ve known of 4 children who are no longer limited by their diagnosis. They have gained their wings, all  Mylahs age or slightly older, so it’s very frightening. I don’t like to live in fear. I just recently, within the last two year stopped having daily visions of Mylahs funeral. And even those visions weren’t always “sad” but merely a run of what the service would look like. I feel guilty for posting Mylah on social media for fear of causing my friends grief or pain. 

Losing Lila and Ava felt too real. So I’m even more intentional about loving on Mylah and telling her how much I adore her. Some days I find myself in tears at the thought of losing her but I quickly snap out of it but it does creep up from time to time. 

I remind myself to celebrate her. Their deaths are a constant reminder why I should. I will continue to make memories with her and capture that beautiful, radiant smile that I’m blessed to see on a daily basis. 

My heart goes out to my friends- their moms, and families. It’s the first Christmas without their babies. I can’t even begin to understand what that feels like but my love for them never wants to see them in pain. I pray that God covers them in their dark days. I pray he continues to give them strength in the moments when they feel they can’t go on. I pray that his love continues to sustain them. 

I pray each person who reads this was able to enjoy their holiday. I pray you were surrounded by the abundant love and joy this holiday season brings. 

Our love to you and yours. 💚❤️


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