How Citrullinemia Stole Christmas.

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.

because photos like this are reminders of the one thing I want the most….

…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.

10 thoughts on “How Citrullinemia Stole Christmas.

  1. Mindy, my heart is aching reading this beautifully written and profoundly vulnerable post. I wish we could live closer because I’d call you up to grab coffee and cry together , pray together. Corrigan may have yet to “understand”, but Jesus sure does understand his sweet heart and mind. It is our loving Lord who saves no matter our strengths and weaknesses and I have a feeling He’s already marked your precious boy as his own. Santa’s got nothin on him because his heart belongs to someone greater. :-). Much love to you, friend.

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  2. Jennifer, we can’t help but feel the pain some days and I am sorry you woke with the same thoughts in your head but I think it is natural, all things considered. I know how thankful you are too though, and I know that you also can shake off these feelings and get back to smiling. We can do it together.

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  3. Hi, I just found your page via Love that Max and I have to say that your holiday story has me in tears. My three-year old son has developmental delays, most significantly a speech and language one. My whole heart relates to your post. People tell me all the time to “give it time…” and I am, and I will, but at the same time, I can’t help but feel sad and hopeless when my friends innocently brag about their three-year old kids being excited for Christmas when my son has no concept of this huge event taking place less than a month away. Like your son, Tucker will love the holiday lights. But he won’t associate them with anything but pretty lights.
    Thank you so much for sharing. This is really a beautiful post, and I’ll definitely visit your blog again.

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  4. Thank you for coming over and leaving a comment! I always feel guilty for thinking the way I did in this post, but I don’t think it takes away from the blessing to speak about how hard things are sometimes. It sounds like your Tucker is very similar to Corrigan and I hope that even if both of our boys don’t “get” Christmas quite yet, they still enjoy the heck out of the flashing lights and fun music, because whatever makes them smile is worth it!

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    • You’re so right that whatever makes them smile is worth it! And, please, try not to feel guilty. I know it’s hard. I feel guilty every time I wonder whether Tucker will ever catch up. I try really hard to tell myself that whether he does or does not is NOT what matters. And then I feel guilty for even spending time feeling guilty.
      It’s still hard though. Somebody asked me last week if Tucker’d written a letter to Santa yet. I was like “um.” I mean how can I even answer that? Like, have you MET him? And you’re going to ask me something like that? Way to rub it in, thanks. Grr.
      Enjoy your holiday preparations and I’ll definitely come back! You can read more about Tucker if you want to on my blog. I’ll warn you though, some posts have zilch to do with him. And I don’t always come right out and admit how much is really wrong. I think I may still be in denial a bit (much easier to do that on YOUR blog, tee hee).

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  5. I will stop over for sure! And I hear ya on the “letter to Santa” thing. Heck, I get tense when someone says, “Hello, what is your name?” and Corrigan either stares blankly or pays no attention and is just spinning and chirping-coming across as rude. Or “how old are you?” such simple things to ask a child his age, but something he is light years from being able to answer with knowledge. Often I just put my hand on his head and say, “This is Corrigan and he has a hard time finding the right words to say.” but it always kind of stings.

    Feel free to do all of your confessing over here! lol. It is a judgement-free zone!

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    • I hear you about it always kind of stinging. When people ask Tucker those questions, he either hides his head or puts up his hand in front of his face and screams. It’s a good day when he actually screams the word “no.” (because you know, he’s using a word and communicating with them. sort of.)
      Thanks for the offer on confessing here! I might just have to take you up on it. All of Tucker’s grandparents live far away. And they read the blog. They’re older, and so full of hope and convinced he’s just “slow to talk as so many boys are” that part of me holds back for THEM. I know what it feels like to have your dreams shattered and mourn the loss of the boy you thought you’d have. Sometimes I want to spare them that. I should be more open about everything though. I tend to make light of some of his delays, or just not mention them. I definitely don’t mention to my friends with typical kids that my son is perfectly happy sleeping in his crib, that I have no idea when he’ll be potty trained, and that he still drinks a bottle of milk every night. I just don’t want to hear whatever advice they have to offer about how THEY weaned their typical kids from those things. Not the same, people. Not the same.
      Glad I found you, fellow blogging mom!

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  6. (((HUGS)))(((HUGS)))(((HUGS)))
    Some days are just tougher than others, aren’t they? I have been there, although, never seem to find the words as wonderfully as you can. Last couple of weeks have been rough, I felt like citrullinemia slapped me in the face. I try to be positive too, I really do, but sometimes you need to be sad…I don’t think that’s wrong. Citrullinemia changed our lives forever and will continue to change out lives. I know that, I have accepted that. Somedays we NEED to let the real emotions out and let them flow! Tomorrow we can carry on and be positive; tomorrow we can be superwoman, supermom, superwife, again! But today, you need to feel what you feel and how you need to feel it! I love that you are always REAL.
    xoxoxoxxo

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