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I can’t believe tomorrow is the last day of the worst and best year of my life.

The first half of 2013 brought nothing but absolute misery. We rang in the new year at home, HG in full swing. I’d just gone off my zofran pump because the side effects of the pump were on the verge of giving me a nervous breakdown. When I’m in the throes of HG I don’t talk about it much because talking about it makes it feel so much worse, and when I’m not suffering I try to put it as far from my mind as possible, but maybe one day I need to tell you guys about what a miserable, soul sucking disease HG is. Not today though, because I’m still trying to forget about it, and it’s too emotionally draining to dreg up all those memories.

Not to mention, I’m pouring through other painful memories today.

2013 was terrifying.

On March 14 of the worst and best year of my life we got Copley’s diagnosis that I thought ruined our lives forever. All I could think about was my fear. Doctor after doctor, test after test, diagnosis after diagnosis. It was an emotional rollercoaster. And fear was the driving force. I wish I could say I’ve vanquished my fears, I have one nagging fear left that haunts me, I try not to think about it, but deep in my heart I can recognize we have been too lucky, that luck like ours cannot hold and that eventually the other shoe will drop. But, I bury this because it’s not a good way to live. And I’ve learned, in 2013, a lesson I’ve struggled with my entire life.

I cannot control everything, or, really, anything.

2013 was humbling.

I am only a woman, only a wife, only a mama. I’m small and insignificant and I can’t change or control anything. I can’t tell you how freeing this realization is. When we first learned that Copley has Down Syndrome my first reaction was that this diagnosis would take us prisoner, but in reality, it has set me free. Free from expectations, free from the burden to control everything, free to just love and be loved in return.

2013 was joyful.


Josh describes Copley as “our little ball of sunshine” and he truly is. Pictures and video can’t show the depth and breadth of his happiness. He is sunshine incarnate. He is the happiest baby I’ve ever met in my life, and I wish you all could meet him, tickle him, hear him laugh, see his smile when you walk away for a second and come back…  I think of this popular quote by Elizabeth Stone “Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.”  To be Copley’s mama is to watch my most joyous heart given form. Copley is my heart, he has changed my whole world.

2013 was inspiring.

Sometimes parenthood wears me down. It’s just damn exhausting. The diapers, the crying, the tantrums, the stickiness… But the most miraculous thing happened when Hen hit 2.5. Along with the most terrible twos came the most terrific twos. Nobody ever talks about those. He tells jokes. He makes up stories. He learns at light speed. He gives hugs and kisses and tells us he loves us unprompted which is about the best thing I’ve ever heard in my whole life. He hugs us when we are sad and crawls into our arms when he’s sad. He cooks with us and puts on his own coat and shoes (often on the wrong feet! Adorable!) He kisses and hugs his brother one minute and then turns around and tells Josh to “Put it over there and come play” (‘it’ being Copley).   It’s amazing watching a toddler, because they are perfectly truly honest, no pretense.


2013 was acceptance.

What I find, looking back on our worst and best year, is that finally, I accept it. I accept everything. No, I don’t accept it, I’m grateful for it, I love it, all of it.

I love the terrible twos and I love my family, I love myself and I love Down Syndrome. I love our life and I will take the pain, the fear, the stress, the anguish so that I may also be given the love, the light, the bliss, and the joy.