I’ve been thinking about all the ways you impacted and changed my life for the better. Although my heart continuously aches and I find myself getting less emotional on a regular basis, but more often at random when I least expect it, I’m realizing that this is what life is going to be like. Maybe not forever, but a while. It’s okay. One of the biggest lessons I learned from you is patience.
I remember when I first brought you home and read all those baby books, the milestone books, that drove me mad. Everything written is based on some sort of typical (in my opinion, make believe) developmental timeline. From you I learned that all that shit is stupid and meaningless in the big picture we call life. It’s just another one of those ways society works to make you believe that the world only works one way and if you don’t fit into that box something’s “wrong” with you. Sadly, as a first time parent I nearly fell into that trap of believing everything I read was true…well, until you. You showed me that everything comes in time. Everything. While it would be nice if the rest of the universe could see that. I hate that, that also means death.
I journaled a lot during my pregnancy with you and a few months after you were born. Then I stopped. Partly because my time was limited. I had gone back to work and finding that balance between mom and professional woman was challenging. I wish I could have kept it up. By the time I had my new schedule down your dad and I decided what the heck, lets have another. Had you not been our first baby there may not have been a Sage.
I hear that easy going peaceful babies are hard to come by, but you were exactly that. When you’re a parent with a disability who has experience with what it’s like to have a childhood lifestyle filled with healthcare and therapy appointments it’s not all that hard to imagine living through that again for and with your child. Of course, you always had more therapy appointments then I ever did, but I had a ton more fractures within my first four years of life than you. I think we’re pretty even. That’s why none of that was ever too much for us to handle.
You didn’t just teach me how to be a parent with patience who is now widely known as a helicopter mom, you also taught me more about disability rights and inclusion than I have learned both through my own experiences or career. You my girl, will forever be in my heart and constantly on my mind. I will always ask myself, what would Olivia want? I will always think about inclusion in a more meaningful way and I will never pickup or suggest an ableist book on milestones to anyone.
I love you, Livy. Your daddy, brother and even Zane Baby love and miss you. I know this because once in a while I find Zane laying on your bed. Yes, the room he would hardly enter when you were here. I’m not sure how he’s getting up in your bed considering he can hardly get on the couch these days, but when no ones looking he does.
I wish you were to here to see how amazing our garden is turning out to be this year…we might of slightly gone overboard. The mulch and dirt are not the same without you.