My mom always says I’ve been a mother my whole life, even when I was a little kid. I loved dolls; I was borderline obsessed with them. My family called me “little mommy”. I begged my big sister to walk me to the hospital, three blocks away from our house, so I could go and see the new babies in the nursery. I’d just stare through the glass at these little people I didn’t even know. My brother was born when I was 12. There are videos, and many pictures, of me standing in front of him with my arms crossed.  I look like a bouncer at a night club, protecting him from all potential danger. I always babysat when I was young. I was a nanny for two different families.

I knew I wanted to have kids; a lot of them.

When I actually became a Mama, it was so much better than I imagined it would be. When they put Kenley on my chest, I remember knowing instantly that this is as good as it gets. This is the best feeling I’ll ever get to have. I’ve had so many moments like that in my two years of motherhood. The first time Kenley called me Mama or when she said ‘I love you’. Or, the first time Blake stopped crying to the sound of my awful singing. These are such special things I get to share with these two little humans I got to make. I sincerely believe that being their mother is a privilege. Of course, it’s one of the hardest jobs in the world but definitely the most wonderful.

My child being taken from me was never something I considered coming along with being a mother. Knowing and preparing for my baby to leave this earth is not the natural order of things. A fellow SMA parent told me, right after Blake’s diagnosis, that all of it, the whole process, is so unnatural. I can’t tell you how many people have uttered ‘it’s not right’ to me these past two months. They are correct, it’s not right.

I can’t change Blake’s diagnosis; I can’t heal her, as much as I want to. That is hard as hell. What I can do is make plans for her little life that honor her. There is nowhere I’d rather be than with her, making sure she is happy every moment of the day. That comes naturally to me, as I’m sure it would to most mothers. Taking care of and loving her is still my privilege.

All the impossible decisions, the tears, heartache, the pain; it is part of being a Mama to my Blakey. I hate the pain that comes along, but I deal in the best way I can because I want to. I want to make sure I do everything I can to give her the best life. I’m learning that these parts of being a mother are not what are expected. We don’t want to discuss them or think of them because they are scary and they hurt. Yet they are, quite possibly, the most important parts of being a mother for some of us.