A dear friend of mine wrote today and summed up beautifully the struggle I have felt recently. She said: "I am so thankful things seem to be going so well for you all lately, but I know that it still is hard and you still have so many struggles."
I am literally awed by the blessings we've enjoyed over these past months. Collin hasn't had an identifiable seizure in almost 5 months. We didn't think that would be possible. He laughs every day. Lots of times. At consistent stimuli. He is moving his whole body with more purpose. He is using his vision. He is making more and more sounds and responding to particular words. He cries - loudly - when he's unhappy and is comforted in my arms. He continues to surprise me with the things I didn't know he knows. There are many times every week when I feel all giddy and ridiculous with happiness because I am so crazy about Collin.
But then there are also all of those times when the therapy I've been doing for weeks or months doesn't seem to be making a dent in his challenge. When I'm getting him in or out of the car for the 12th time that day and he is a limp noodle and can't give me any help out of the carseat or into the stroller and I have to close my eyes for a moment to breathe out the momentary frustration and all of the deeper frustrations pushing up under it. When people around me who I love so much watch their children breeze through milestone after milestone or go on to have more children without concern about genetic issues - and while my heart swells with happiness for them I feel more acutely the reality of our own situation. I have these kinds of moments -- when the weight feels heavy or the task seems huge, when an insensitive word pierces or another treatment or challenge gets added to the mix -- and it all just feels so hard. But I'm still intensely aware of all of those awe-inspiring, excitement-inducing things going on at the same time, so I feel ashamed of being weary or discouraged.
But the truth is, as my friend explained, things are going so well for us and we do still have so many struggles. It's not all one way or the other, and I'm actually grateful for that. That's why, when people offer encouragement about Collin's progress, I want to say, "Yes, but it's so hard for him in other ways," and when people offer empathy about the difficulty of our life, I want to say, "Yes, but look how far he's come and how amazing he is." Somehow, just the acknowledgement of this complexity makes reconciling the two sides so much easier.