Nick loves birthdays, especially his own. To him, it is the best day of the year. Last year on this day, the eve of Nick’s birthday, I had a huge paradigm shift.
For years, in spite of my usual positive proactive approach to caring for Nick, that one day each year was a dark and difficult day for me. It is embarrassing to admit this, but I would mark the number of years that Nick had been with us with reminding myself of the milestones that others his age had experienced. I completely compared his life to others and that particular day, only found lack. I would always leave my personal pity party once that date had passed, but I would return to the same emotional place year after year.
One year ago, Nick asked me why I wasn’t happy about his birthday coming up. I told him the reason. Thoughtfully, and looking straight into my eyes, he said, “I all right mom! I happy. You be happy, ok?”
In that one moment, the pain of comparison and feeling of lack was swept away. I had a wonderful day that next day.
This year has been incredible. From the first of August, Nick has discussed his birthday from the moment he has woken up each morning until he has gone to sleep. He planned the food that he wants to eat and has talked to everyone he’s met about his upcoming birthday.
He decided that he wanted a big birthday party, so today we went shopping. He dictated the list. At the top was balloons. I didn’t get 39, but we did get 26. That was all I thought we could fit in the car to get home. It was a tight squeeze.
This evening Arden went back out to the store to get a few things we still needed. Nick asked me to text his dad, and then call him too, so that Arden wouldn’t forget. Arden got everything on the list.
We are going to have a glorious day tomorrow. Our friends and family will gather, it will be a blast.
There are things that are difficult about caring for someone who has a life threatening syndrome. It can be really stressful at times.
One thing I must mentions is that the outpouring of love and tenderness I get to witness, as I stand by Nicks side, is awe-inspiring. Most of the time, I am privileged to observe the kindness and compassion others show to Nick. People showing up with their best selves. That is one of the truly wonderful things about being with Nick – just by being himself, he helps bring out the best in all of us. For that I am grateful.
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