Story by Kelly Blumenthal
Tonight on the beach, a group of passer bys taking a walk saw Finn playing in the sand. We had to take his clothes off because after 786,001 times of telling him not to go in the water, he did anyways. At first, they saw his back, blonde hair, sun kissed skin and the sweetest little baby butt. They were all smiles, oos and ahs. Then, he turned around and they saw his chest and abdomen. An immediate look of concern hit their faces and they even slowed their pace to look more. I heard one of them whisper ‘Oh no, look at his chest.’ So, I walked over.
‘He fought off a shark trying to attack me.’ I said. They looked at me with confused horror in their eyes. I let the awkward pause probably linger a little too long and then said ‘I’m just messing with you. He has heart disease and has had a few surgeries and that tube right there is for all of his medicine.’ They looked a little relieved, looked at him and then looked straight at me and with the most sincere tone said ‘I’m SO sorry.’ I gazed back, smiled and replied ‘Sorry for what?’ More awkward silence and he said ‘That he had to endure that. That he had to suffer.’
Now mind you, I caught this guy off guard with the cute baby buns then surprising scars. Then I totally threw him for a loop with the shark story, so this poor man was obviously like every other passer by we meet just shocked and sincerely heart broken for his broken heart. His words were empathetic and most appreciated.
I’m not sure what came over me. But I told him the truth. ‘It’s ok. I’m not sorry. I’m not sorry he has a scar. I’m not sorry he has a g tube and needs medicine three times a day. I’m not sorry he has needed 14 procedures and months in the hospital. I’m not sorry because he is here. I’m not sorry because ten years ago, we would have a different walk on this beach. Ten years ago we would only have one child to fly kites with and dig holes with on the beach. Ten years ago, I would watch just my older son play in the water as I looked over the ocean in tears praying that my younger one would have made it. Every single day that goes by gives him a tiny bit higher chance of survival as technology continues to advance.’
He looked a little surprised and said ‘That’s amazing. So will he live a long life now? Will he be ok?’ My honesty continued to overflow. ‘I don’t know. And that’s ok too. I look at this child every single day and find so much peace knowing that we have truly giving him every opportunity at life. His life may be cut short because of his heart disease but I’ll tell you this, I have to stop focusing on a long life and focus on just life. I make the most of not just every single day but every single moment. He makes huge messes, eats Oreos for breakfast every now and then. Sometimes we stay up super late and then sleep in until we wake up. We don’t stress about a schedule or if dishes are done. We don’t keep count of who has done what for who because it’s not a competition. But we do laugh a lot, go on adventures even if we are tired, be silly and not worry about what people think, sing really loud, dance even though we know we’re not good at it. We LIVE in each moment.’
Finn has taught us that whether you have a broken leg or a broken heart, no one really ever knows how much time we have left. He has taught us that you never really appreciate that time until it’s almost taken away. Then, I left him with this, ‘Don’t wait for something to happen in your life to learn this. Learn it from him. Eat the cake. Marry the girl. Take the job. Ride the elephant. Whatever you’re muddling over, if it makes you happy, do it.’
He paused. Looked at Finn and all of the scars covering his tiny chest and body; then, looked at me and began to walk away. He hadn’t taken but two steps and as he turned around, he looked me right in the eyes as if he had experienced an AHA moment and said ‘Thank you’.
I do not believe Finn’s purpose in life is to change the world. I mean, that’s a lot of pressure anyways, especially for a 3.5 year old 😉 But I do believe that he changed ONE life today; and maybe, just MAYBE that one life will change another, and another, and another…….
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