Miles’s Story

Site created on June 21, 2021


On May 28th my sweet sister and brother in law received the heart wrenching news that their 4th child screened positive for Trisomy 18, Edwards Syndrome, on a free cell DNA test. This same day they also learned they were having a boy. His name is Miles Matthew. Most children with this condition are either stillborn or pass within a few hours to 15 days after birth or are miscarried so early on the condition is never identified. About 5-10% live beyond the first year but not without significant medical intervention and countless surgeries. Most that do survive are never able to sit-up, verbally communicate, and have the mental aptitude of a 6 month old for the rest of their lives. There are some that do overcome these obstacles, but they are miracles and anomalies. We hope you can join us in lifting the Tetrault family up and surrounding them with love and peace through this incredibly painful time. 

Newest Update

Journal entry by Alyssa Tetrault

Desr Miles,

It is hard to believe you've been gone for 4 whole weeks.  Those who haven't experienced debilitating loss or grief may think the further you get away from the grief the less it hurts. But grief doesn't work that way. It isn't linear. It is scattered and sporadic and non-patterned and frantic and surprising and exhausting. I was feeling so good this week. I had drive, purpose, meaning, energy. I felt a little like ME for the first time in MONTHS. I felt so consumed with love and joy I couldn't keep it contained. And then the next minute I'm crying for a reason I couldn't discern, nor did I have the energy to try to figure it out. Samr thing today.   Felt joyful and purposeful and then terribly alone and desperate for companionship. 

I tell myself its your daddy I miss, and I think a part of me does when he isn't physically with me because he is literally my other half. But a deeper part of me realizes that that intense loneliness is because a piece of me is missing. It's you, Miles. You're supposed to be here. A mom isn't supposed to outlive her babies. A mom isn't supposed to have a maternity leave without her baby. I think that is the real reason sadness sneaks up on me no matter how ardently I try to choose joy. Because I have a hole in my heart and you're not here to fill it.

I love you forever and always.

All my love,
Mommy
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