My family endured the worst pain imaginable on Monday, May 2, 2016 about 11pm. My young triplet son Benjamin died in the PICU at our local children’s hospital. He had endured over a year of being in and out of the hospital with various respiratory viruses. The final one was too much for him to fight.
For any mom who loses a son, you wonder ‘why’? Why did this happen? Why me? Why us? What could I have done to keep him well? And the worst question of all that comes from a place of guilt – is there anything I could have done differently to deliver a different outcome?
For me, I believe the answer is no.
My triplets were born very prematurely at just 25 weeks and 2 days gestation. They were each only about 12” long and 1.5pounds at birth. Benjamin was always the smaller one, the weaker one, the one who couldn’t fight infections very easily, and even the one whoat one point was critical status in the NICU. We were living hour by hour, day by day, just hoping he would grow stronger and praying for as much time as possible. By the time he discharged from the NICU, he had brain damage, a feeding tube and seven surgeries. YES, seven.
The truth is we could have easily lost him in those very early weeks, when he was fighting for his life. He was so weak and so small, all I could do for him was touch his hand through the arm holes in his incubator. He was six weeks old before I would even get to hold him. Despite all of this, he wasn’t taken from us until a month before his fourth birthday. We had close to four years with him.
And I choose to believe we were given these almost four years for a reason. For me, the new question became how can I honor him and share him with others, giving real meaning to his short but sweet life.
The answer came to me suddenly one day, Ben Smiles Memorial Foundation. We established a way to support special needs families by gifting switch-adapted toys and other devices that insurance doesn’t cover. We also donate our time and efforts to support the organizations that supported us.
Colin and Ava, Ben’s triplet siblings, are involved every step of the way, from toy testing to packaging gifts and gift bags, to helping us serve dinner at Ronald McDonald House, to meeting kids and delivering gifts when we are able. I believe we are making an impact with families, and I believe Colin and Ava are learning from the impact as well. They see the power of giving. They see the passion we have for helping others. They see that other people need our help. We talk about how fortunate and blessed we are. And they know their brother’s purpose here was to enable us to give to others.
As they get older, Colin and Ava may not have any real vivid memories from their time with their brother. Or memories that aren’t prompted by an old photo or video. But hopefully they will remember that it is important to honor their brother through our gifts.
And our giving has helped reconcile my grief. The grieving doesn’t get easier. I haven’t become ‘less sad’. My heart still skips a beat when I see an old video or photo of Benjamin. I need to catch my breath when I go into his room. I feel a pit in my stomach at moments like these when I choose to write about him. I tear up wondering what he would be doing with his brother and sister at six and a half years old. I miss him everything single day, and crave to see him or hold him, even for just one more minute. And still may wonder if I had only done something differently …
But then I remember the lives that we’ve touched because of his death. I don’t do it for the praise from others or for the thank yous. I don’t do it to show that I am surviving and have found a way through this. But I do take every opportunity I can to talk about him and share him with others. It makes me happy to know that other families now know him. I love showing his beautiful face and his beautiful smile and talking about his strength. And I can smile when I see other kids smile.
And I remind myself this is why Ben died.