It is always strange the things that knock me for a loop in regard to Corrigan’s development. I’m generally pretty positive about his situation and focus on his successes, no matter how big or small, but sometimes, when I least expect it, the reality will smack me in the face and the sting will linger throughout the day.
We dug out all of the Christmas decorations from the attic last weekend, and among all of the cute little snowflakes and strings of lights are several Christmas albums from Connor’s first few Christmases. Like a lot of first-time parents, I carefully documented everything about Connor’s young life, even filling entire engraved photo albums for specific holidays. Over the years, as digital photography became the “norm” the albums became fewer and I don’t have a single Christmas photograph that includes Corrigan even printed.
I’m not sure why that is, I always vow to print more of my photos, we all get such pleasure out of looking back through albums together, and I certainly take enough pictures to fill several a year. And those old Christmas albums have never bothered me before, I have looked at them each year since Corrigan was born as well, without any sadness or “what might have been’s” but for some reason Connor’s “Christmas 2001” album kicked me in the gut today. At Christmas time, in 2001, Connor was the same age as Corrigan is this year and the differences between the two are eye-opening.
There are so many years between Connor and Corrigan that I have long forgotten what is “normal” for certain ages and my willful and deliberate ignorance of developmental milestones is more of a self-preservation, sanity-saver than some noble attempt to not assign what is “typical” to Cor. If I look at the long term, if I squint my eyes and try and look way down the road, my vision becomes blurry. I end up wiping away hot tears of anger and frustration at the things that have been taken from Corrigan due to Citrullinemia and I can’t let myself think too much about the future. That sadness mixed with bitter-tinged anger makes me the kind of mother that is unable to see the bright spots in the journey and I end up tripping on my own feet. I didn’t expect the past to mess with me.
That darn 2001 album though, it tripped me up and I just need a minute or two to be sad. To be angry because Corrigan’s life is going to be so much harder than Connor’s. Because I gave him a defective gene. Because a doctor missed the signs and because newborn screening didn’t come back fast enough. Because someone read twice daily lab reports and didn’t think that a hugely elevated ammonia in newborn was cause for concern and his brain was bombed for four long days.
Because of all of that, my little boy is four years old and doesn’t have the slightest idea of what Christmas means. How do I explain Santa? Or more importantly, Jesus? He loves Christmas carols but because ammonia damaged his precious brain, he can’t sing the words and can only mumble along in his sweet little voice. He will wake up tomorrow and see the Christmas lights that I have put up on the fireplace mantel but it won’t register to him that it is because of a holiday. He will love them, oh my he will love them, but for no other reason than he loves all colorful lights. His wide-eyed expression, coupled with his breathless “whoaaaaaa” will both make me smile, and break my heart at the same time.
Friends and family always encouragingly say, “Next year he will get it” or “This is the year it will all click for Corrigan!” but I can feel how much ground we have to cover for things to “click” and if I feel this way this year, how hard will it be when next year at 5 1/2… or at ten? At some point, there has to be some resignation and peace about all of this, right? Otherwise, every single holiday will be touched with sadness and I don’t want that.
But the doctors sure aren’t making any positive predictions. His therapists are cautious about expected outcomes. No one is talking anymore about brains making new pathways now that we are approaching age 5. I don’t know how to adjust my own expectations now that things are obviously not where I thought they might be by now.
We won’t set out cookies and milk for Santa, Jericho will steal them anyway and Corrigan doesn’t know what reindeer are, or the story of Rudolph. He doesn’t know my name, let alone St. Nick’s. He can’t comprehend that he will go to sleep and a big fat guy will bring presents. I can speak all of those words to him, show him ten videos every day for a month and read a thousand books but it won’t register. Sure, eventually I will be able to show him a photo of Santa, and he may label him correctly, but the idea of Santa and all that entails? Might as well be Mandarin Chinese.
Corrigan won’t be able to participate in any Christmas plays like Connor did. He won’t be able to remember any lines, or stand up on a stage with a dozen other little preschoolers. One of the most beautiful, and heart-wrenching, things I have ever heard was Corrigan attempting to sing “Away in a Manger” last night. He wants to sing. His pitch is so perfect but his brain just won’t release the words from his head. When he sings the word “Jesus” my eyes fill with tears. How will I ever be able to teach him about Jesus? That beautiful, remarkable reason for this sparkly season?
He is terrified of food and a blenderized gingerbread cookie, slipped into his tummy via feeding tube, just isn’t the same as running around the Christmas party, snagging cookies from the dessert table. There’s no hot cocoa, or Christmas day roast beef dinner for Corrigan.
It still blows my mind to look at that photo and see Connor holding a Monopoly board game. My memory is so fuzzy, I assume we played it. Of course we did, he was a brilliantly smart little boy. He probably beat me too. Corrigan’s gifts are still those in the infant and toddler aisle of Walmart. Board games? No way.
And I know. I know. I am so thankful he is here, no matter his developmental delays. How smart someone is has nothing to do with their value. Every day with Corrigan is a gift and tomorrow, after I get all of this out of my head and on to this digital page, I will wake ashamed that I let myself be tripped up. I will immediately see so many “bright sides” of things and will once again square up my shoulders and smile. I will keep reading those holiday stories to Corrigan because the one-thousand and first time I read it, something might click. I will string lights in his room, maybe even buy him his own little tree because it makes him happy, and the meaning behind it all doesn’t matter right this minute anyway.
I will happily spend this weekend shopping on Amazon for toys in age-ranges that are years younger than what is on his birth certificate and imagine how thrilled he will be to get that infant toy. Isn’t the point of a gift to bring joy? And I have already hung his own special “medical chocolate” Advent calendar, next to a regular Swiss chocolate Advent,which is moot anyway, considering he would rather get a haircut than eat something, but he will love opening those little cardboard doors each day and pointing to the numbers and calling them out over and over. We will bake a birthday cake for Jesus too, and he will be thrilled for the chance to watch the candles dance and practice blowing them out. We will make it wonderful. We will make it through.
Tomorrow is a new day but today was a tough one.
…that connection. I don’t even know if “connection” is the right word. I can’t even say much more about it than it simply isn’t here this time around. Not this Christmas. Not yet. But… it is the one time I will let you say, “Just give it time, it will happen” without growling at you, because believing otherwise is the emptiest feeling in the world.