Recently I was speaking with someone and explaining my infant niece’s terminal diagnosis. How she has a genetic condition called SMA, that it is terminal. Explaining how my heart is broken in a way I never imagined it could be. How I’m angry and sad for her, for me, for my son who won’t get to grow up with his baby cousin, for my other niece who won’t get to grow up being a big sister to the baby sister she loves so much and for my own little sister who has to watch her baby get sicker and sicker until she’s gone. How it hurts so much that I don’t think I can take it.

One of the things she said to me was, “You will be a part of her entire life. What a privilege.”

This made me think about three different things:

First of all, how angry I am that this is happening. I know that life isn’t fair, but this is fucking ridiculous. I don’t want to be a part of her entire life. Her life shouldn’t be so short that it fits into mine; I should be long gone by the time her life ends. I don’t want to be left with only pictures and memories of her. I don’t want to have to say goodbye to her, I don’t know how to.

Secondly, there is the recognition that I don’t get to choose.  I can’t change how long her life is (or anyone else’s for that matter), no matter how desperately I wish I could.  There is no cure for this disease, not yet anyway. This beautiful, sweet baby will be stolen from us because of a tiny hiccup in her DNA and there isn’t anything I can do about that.

Finally, the understanding that being able to be a part of her entire life IS a privilege.

I was outside of the delivery room, ear pressed against the door like a creeper when I heard her take her first breath and let out her first little cry. Since then I’ve seen her almost every single day. I’ve been able to feed her, dress her in the excessive amount of cute clothes I buy for her, make her smile and hold her while she sleeps. Her parents have trusted me to care for her in their (brief) absence, both before and after her diagnosis. I still get to hold her, feed her (slowly and with breaks), rub her back and tell her that it’s ok when she chokes or has trouble breathing. I get to give her too many kisses and look into her eyes and tell her how special she is and how much I love her.

I don’t know where I’ll be when she takes her last breath here on earth, but I know I’ll be close by. I know I will still be angry that she was robbed of the length and quality of life that she deserves and devastated that we don’t get more time together. I know that I will also still feel so lucky that she was here and that she was and always will be a part of my life. And most of all I know I will always feel so very grateful to have had the privilege to be a part of hers.