How's Avery?

Lately I've been thinking of all the unsaid words that pass through my mind when someone asks after Avery. Because there is never enough time to respond accurately to the person with the kind, well meaning question. And it's not to say that I do not want to be asked! I always appreciate the thought. I try to keep it short and sweet for you when meanwhile I could absolutely talk forever.

And I do, sometimes.... to my closest friends, and they know who they are. I can only imagine they are thinking, "what next?" because boy do the issues just keep rolling on when you have a child with so many challenges, who cannot communicate.

A special needs website that I follow asked a question the other day that made me think even more about this topic. What's one secret or truth you wish you could tell others about your experience with disability? One thing I would say is that it's really hard to be honest with friends and family about Avery. And I'm not talking about dishonesty, I'm saying it's really hard to paint a picture of what this is like for her and for us.

Sometimes I say "good" when I'd really like to share what a horrendous time she has sleeping through the night and how insanely frustrated she gets because we don't know what she wants or what hurts. Sometimes I want to share how horribly hard it's getting to lift and carry her; how difficult her special diet can be; how she head-hits whenever she is frustrated and for months it has been a huge problem that is only getting worse. 

When I respond with "she's hanging in there" sometimes it's because I've had to hold back tears multiples times a day, worried about her frequent seizures. I'd like to share how hard this is all to take one day at a time, even though I know that's the only way to survive.  

I could talk all day about how she hasn't been herself in months, but we can't pinpoint why. But I won't, because I don't want to scare the hell out of you with our list of worrisome details that most parents do not face every day. I don't say any of these things because it's a lot easier not to see the concern on your face and watch you struggle to respond.

The truth I wish people could understand is that I don't want to burden you with our problems, I don't want to have to ask for help and I really don't want to be pitied. So most of the time, I'm going to say "good."

I hope you understand that all of this and more flashes across my mind when you ask me about Avery. Please know that I really am thankful when you ask, even if I have a look on my face or something in my voice that might seem disconnected.

I also want you to know that your questions and thoughts about Avery mean the world to me. I always notice those friends and family that show me how deeply they care about her welfare by asking if I need help with her, or actually putting forethought and love into gifts for her. It makes a huge difference to us.

I wish I had a cute current Avery photo to go along with this post, but those have been very hard to come by lately. Instead I'll share one I came across the other day that put a huge smile on my face.