survival + a fog

(little m at a month old)

this week i have been thinking about how it felt back in the beginning, a little over a year ago, when we had learned our baby was deaf. it felt so inescapably sad. i had no idea that a year later, life would feel pretty normal. that we would still experience moments of grieving her deafness, but that we would also discover the goodness that lies in the hard. that we would laugh again - deeply and often, and learn how to cope and move forward. that some days we wouldn't even think about deafness. that our daughter would be incredibly joyful & content & silly.

one of the things that first helped me was reading the blogs of other families who had deaf children, or of connecting with people who knew how this type of loss felt. so i am including an excerpt from my journal today, from one week after our baby's diagnosis. it's pretty raw, but maybe someone who has just found out their baby is deaf will read it and know that it's ok to feel such sadness, and hear that life will be good, and rich, and wonderful again. or maybe you just need a reminder today that sometimes we are in seasons of grief, and then over time we are able to move out of that season into beauty and joy.

"A week since we found out about M’s hearing loss. It seems so foreign she is deaf. I feel like Matt and I are sort of wandering and in a fog this week – a mixture of grief and weight and the inability to move forward. She is so beautiful. She is perfect. She is deaf. 

Right now Matt and I are both grieving, and in different ways: my endless crying and quietness; Matt’s hours in the garden and on runs. So much of me screams, I can’t do this! 

What is the best, most informed and thought-through decision? I feel like I am always asking that in life already, and now there is so much more to ask “what’s the best” about? Sign language (if so, which type?), total communication, auditory verbal, hearing aids, cochlear implants, kind of schooling, etc. So many decisions to make. It is so hard. I just want to feed my baby, sleep, snuggle her. Instead I am running this gauntlet of choices.

It feels like all I think about is this: M is deaf. Everything else is survival and a fog: whether she is sleeping or eating or crying – it is a fog. 

What if we make the wrong decision? What if we are sucky parents to her? There is a part of me that feels like I am never going to paint again, or have my regular self back- that my new life will be all focused on helping M with hearing stuff. Then Matt gets mad at me for feeling that way, because he says that we are both in this together: why do I think that every part of raising her & dealing with her being deaf is on my shoulders? 

Adriane came by and just sat with me and cried with me. It was kind of all I needed. I wanted to say everything I was feeling without someone telling me how I should feel, or how things would be better soon. She reminded me, gently, that Matt will anticipate and take care of areas of m’s needs in ways that I’d never even think of. She also said that even though it feels inconceivable right now, that someday we’ll be able to talk about her hearing loss without crying and sadness. And that in the end, even though we have so much support and so much love, that it is hard: it really is just Matt and I who are in this – which is how it feels right now. We are here in sadness, and everyone can leave and go back to life as normal and think about other things. We have no escape. And I wonder if I am up to it? Can I be a good mom, wife, artist, friend? Right now it feels like I can't possibly. Especially when I am getting so little sleep and I feel emotionally exhausted. 

I still have this small hope that M's ears will be healed. That this can be reversed. I try to pray, and I say God. Please heal my little girl. I want her to her this world of noise you've made. I want her to hear the birds outside. I want her to be able to dance and shout and whisper - and to hear our voices when we are singing or talking to her or praying or reading her stories or saying that we love her. Please."