Jack turns 7 on Sunday, his golden birthday someone says. Golden or not, when time is your enemy it’s extremely difficult to find the celebratory piece to it all. Today I struggle.
I always envisioned Jack receiving intrathecal drug by now, his brain stable and all of us going to bed knowing he isn’t regressing or slowly dying. And here the day comes and still he has no treatment option, so for 7 years I have had to watch this horrific disease swallow up my beautiful son.
Jack turns 7, however functions as an infant-toddler level, he functions way below his 3 year old sister. There are no more excitement around wrapping and hiding gifts to be opened, no excitement all over his face as he sees presents, no more studying of gifts, no more toys and books or character balloons floating around the house. Instead gifts become needs to keep his dexterity, to maintain his oral motor function and sustain his attention. I purchase these items often and view them as his needs, but never do I or will I consider them birthday gifts. And now I will watch his sister opens his gifts and I will hold my breath in hopes he will show some interest in what is in front of him.
I grieve, it’s impossible not to think of my once little boy laughing, singing, opening gifts, popping balloons, and smiling ear to ear. He loved his birthday more then anything, we had to mark and count down on his calendar because he would ask every single day if it was his birthday yet. To have that back. And it’s even more impossible to not wonder what I would be buying a typical 7 year old on his birthday.? Would this be the year of a super cool bike or some special gadget or a new series of books? Teenage Mutant Ninja gear (seen at Target), Minecraft garb (all over the neighbors playroom), or new iPad(don’t all kids want)? Would numerous little boys invade my home doing and being 7 year old boys? Wish.
Instead I swallow back so much pain and sadness. I muster up what strength I have to move about this day in anticipation of Sunday. And on Sunday I will look my beautiful boy in his eyes and wish him a happy birthday. And with the usual blank stare back at me, I will wish real hard that he knows he is loved and he knows that I know he is still alive.
Instead of happy birthday, I’m happy this birthday has came for Jack, because I know one day I will celebrate him alone.
Here are a couple of my fave birthday memories.