When you have a child with a progressive, degenerative condition, it is sometimes difficult to plan festivities and celebrations because each year marks a year closer to that “average life span” of the condition. Can you imagine the pain in celebrating your child turning 5 if 5 equals 1/3 of the average life span of 15? Your brain calculates these things, you see.
While the world around them is planning parties, ordering cakes, buying presents, and enjoying little children and their birthday antics, many moms are smiling through tears at the day, buying baby or chewable toys, and wishing we could see our child play pin the tail on the donkey with their friends.
Progressive… and degenerative… you see, are more than just five dollar words. They are daily losses of skills, emotion, words, laughter, and personality.
So why do I go here, when birthdays should be a joyous event? And Case is doing so well?
Because I will not forget. Yes, Case got to spend his birthday this year laughing and playing with his friends, opening presents, and eating a Yo Gabba Gabba cake. It was not always typical, but it was amazing compared to where we were 3 years ago.
But many friends’ birthdays are over. And we are only one medication away from where we were.
So, I will celebrate. We will have festivities. Because the time is now. We will enjoy him for the day, the year, the ten years, the fifty years that we are given him. And that is what a progressive, degenerative condition teaches you about a [burth-dey].
This moment. This moment is a celebration. Birthday, yes. Every day, yes, that too.
P.S. Case many times said, “Today is my birthday!” Just the notion that he would understand what a birthday was in some sense and that the particular day meant something associated with cake and presents, was unfathomable over the last two years. We are still working on getting him to remember that he is now 5 instead of 4, but we think that it will come quickly. It took about a month turning 3 and 4 to get Case to remember his new age, so I think a day or two for this year is an amazing feat.
On his birthday weekend, Case played catch outside and learned to field grounders. We went out to a “normal” family Sunday lunch where we even had to wait 20 minutes for a table. Case went to a playplace and lived it up because school was out on his birthday. And for his party, he had a friend party at the same place where he laughed, played, ate pizza and cake, and even opened the wonderful presents that his friends brought. We are truly and unbelievably blessed.