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'I can share his smile with others': How my son is making an impact after his death

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I’m not a wallower.

Never have been. And we’ve had a pretty difficult last few years – from managing a premature birth and a five-month NICU stay to a child with significant needs, caring for triplets, dealing with child loss and trying to figure out this new life. I probably have plenty to be angry about, as many others do in this world. And I am angry. And some days I do wonder ‘why me?’


But …we are also blessed. And I have to remind myself that. I even bought a Joanna Gaines-esque plaque to tell me so daily.

When Ben died, the natural thing for me to do was to find ‘others like me,' just like I did when I found out I was expecting triplets or had a child with cerebral palsy. You quickly join groups with others in similar situations. I looked to social media, joined grief groups, followed bloggers and tuned in wherever I could to remind myself that I’m not alone and not the first mother to ever lose a child. I can survive this and I will survive this. But what seems to be the case in many of these outlets is that it’s so incredibly difficult for moms to begin to step forward since it’s so easy to focus on the awful and the misery. I don’t mean this to sound judgmental, but I’ve done it and am doing it, so I can have an opinion of what works for me.

On the radio recently, the DJs were talking about how people so quickly focus on the negative. If everyone focused on the positives, wouldn’t the world be a much happier place?

For instance, I can share what it’s like to hold your child while his heart stops beating and just wish for one more minute or one more smile.

I can share what it’s like to give him his last bath. Or get him dressed for the last time. Or comb his hair for the last time. Or kiss his check and hold his hand for the last time. And not wanting to let him go.

Or to sing him "Row Row Row Your Boat" for the last time. This was his favorite.

I can share how I didn’t want to leave his PICU room that final time because I knew it would be the last time I would see him and hold him.

I can share how I didn’t want them to close the coffin at his funeral because that was truly the last time I would see him. When actually, by this point, it wasn’t him at all.

I can share how I regret the one decision to do an elective out-patient test because this was the first time he got so sick. He would finally come home 10 days later but requiring oxygen, and I think of this time as the beginning of the end.

I can share what it’s like to invest every ounce of your being and effort into your child’s care until it becomes your identity and purpose. Then one day, the day you thought would never come, they are gone.

I can share what it’s like to answer your three-year-old’s questions or hear statements that start with “When Ben comes home…” for many weeks after his death.

I can try to tell you what it’s like to feel so incredibly desperate just to be with your child but I’m not sure I would have the words.

I can share how I wonder what he would be like today at six years old – how would he have progressed? Would he also be in first grade like his brother and sister?

I can share how I wish every night he would come to me in a dream just so I could have a new memory with him.

OR...I can share how I believe this was meant to be our path. I have chosen to believe Ben served his purpose here. I am still angry and ask “why me?” or “Why this house?” But the answer to that question is because it was my calling to establish our foundation, the Ben Smiles Memorial Foundation. Every step we took lead us to this point. We’re able to impact kids and families with our gifts. I’m able to continue to talk about Benjamin and his meaning for us.

I miss him and cry regularly. And when people tell me how strong I am, I think “if you only knew how I really am not.” But … We are BLESSED because I had Ben for almost four inspiring years. He introduced my family to the world of special needs. He opened the door to a whole new community. He enabled Colin & Ava to see past the physical differences in people. He made me proud of him every single day of his life from the very first one back on June 30, 2012.

And I can share his smile with others. So far through the foundation, we have given toys and other devices to 36 kids in 10 states. Ben is making an impact. I’ve had families in other states tell me they heard about us from their therapists. Ben is making an impact. He is reaching others with his purpose. Ben is making an impact. And this is why us.

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