Good morning! This is my first blog post EVER so bear with me as I push my way through this intimidating first post. I’ve been contemplating it for a couple of days now as I’ve been building the new site for Ben Smiles. I knew that I wanted a blog just to help with updates and bring a more personal approach to it. Then I wondered “what do I write about?” And “What can I continue to share that would help people to engage with Ben Smiles?”
So for this first entry, I thought I would simply begin with “Why Ben Smiles?” For those of you who don’t know us or Benjamin…he had significant needs. At birth, he was a classified as a ‘micropreemie’ (younger than 26 weeks gestation) along with his triplet brother and sister. He spent close to 5 months in the NICU at Lurie Children’s Hospital in Chicago. He had a very rough time there and we are so blessed to have had him on Earth for the time that we did. He was quadriplegic Cerebral Palsy, nonverbal, epileptic, feeding tube dependent; couldn’t sit up on his own, couldn’t move easily, couldn’t reach or grasp things without assistance, couldn’t focus on objects for any length of time, couldn’t stand, play, eat and even at times needed help breathing (the most basic human function). I felt like part-time mom and full-time nurse. Despite all of this, he was happy – he laughed, he smiled, he loved being around his family, brother and sister. He loved to be tickled. He loved loud noises. He loved movement and vibration. He loved school (I know this because he frowned when he was leaving). He loved his dad, who is incredibly goofy and has a singular goal of making his kids laugh. He had the best smile (and the best frown) I’ve ever seen.
I could sit here and list out 100 what-if questions, dream about a different outcome and wonder what would he be like if he were here today and had just turned 5 like my other two? But the reality is that I need to believe this was meant to be his story, this was our fate. I do believe he is healed; he’s still with us and around us; and I do believe he was mine for a reason and his life had a purpose. So that is how Ben Smiles Memorial Foundation was born.
I wanted to continue working with him and through him, share his smile with everyone, give back to those organizations that invested in him and enhanced his life, and support those families who have kids like our Ben…because it is hard. Taking care of a fully dependent child with medical needs is hard. Giving your ‘all’ to care for your kids comes naturally, but that doesn’t mean it’s easy.
So please if you’re able, become involved, follow our progress, help us to reach our goals and make an impact in these kids’ lives.