37 years ago at 6:12 am on a hot July day I came into this world through my mother. I don't know much about how she felt that day but having had the experience of birthing two children myself I am sure she was exhausted and I'm sure she looked at me and saw a perfect baby, one who was pure and whole with a life ahead where anything was possible.
I believe that our souls choose our parents, there are lessons to be learned through them and we are here to teach them. One year I was mad at my mom (sorry mom) I don't remember why, if it's not one thing it's your mother, right. I was speaking with my parenting mentor and she said, "tell me Erin, if you believe your girls chose you, then why did you choose your mom?" I'm pretty sure I rolled my eyes and quickly moved onto the next thing. I do think of this often, why did I choose her? I'll never know for certain but I think it has to do with healing, she is my mirror in life, so everything I judge in her are the things I need to work on the most. My mom is the strongest woman I know and for all the wrong I feel she has done, she has done a pretty impeccable job given what she has had to endure. I am as strong as I am because I know no different. Growing up I heard the phrase, "you made your bed now you have to lie in it," it was the foundation of our mistake making. I hate this phrase but I understand why it's used and in a way it holds accountability it going through life. I do love how strong I am at the same time it's as big of a curse as it is a blessing. I am constantly learning to be gentle with myself while embracing my vulnerable side. It's okay to feel and it's okay not to be strong all of the time.
All of my life lessons have taken me down a different path each and every time. Life will continue to give me the same lesson in different form until I learn, it's like an obnoxious physic problem that my grade 12 teacher wouldn't let me move on until I solved it. Imagine if we spent time learning about real life the way we did about physics, geometry and basically all math passed grade 6, we'd all be #lovewarriors. Each lesson has brought me closer to that newborn baby I once was, the inner child that lives within me, within each of us. I come closer to her IF and WHEN I #chooselove.
My 37th year lesson to learn and grow through for the final time is being okay with the feelings I have around having a child with a rare disease and to really learn to sit with the comfortableness that they bring instead of powering through them by trying to control the outcomes. I am mad, sad, happy, grateful, guilty, tired, scared, optimistic, anxious, creative, ashamed, tired and joyful, usually all within the same day. This year I have learned, am learning that I have never fully grieved the loss of a healthy child and I feel so guilty saying that. I am not the one who is sick so I have always felt that I don't have the right to feel. I keep pushing these feelings down like a Yeti because I never want Olivia to think she isn't good enough or that she caused me pain. I never want her to feel like she was unworthy or a burden. In reality Olivia is the biggest gift she has taught the world empathy and the true meaning of what it means to be better together. She has brought together thousands of people. She and her sister have come through me to teach me to return to love and that we are all love and that life will continue to happen until our last breath, a breath we can never predict but in that last breath we will return to love and until that last breath we must find meaning in all of lifes happenings.
This wasn't my plan, to have a sick kid, to raise hundreds of thousands to find a cure, to advocate for cystinosis and rare disease, to lobby government for cost effective drugs, fight for #bigpharma transparency or to spend hours researching diets for #chronickidneydisease. Nobody enters childbearing years and thinks, "please give me a sick kid, a child who lives in chronic pain, taking meds around the clock, a child works her will every day just to stay alive."
This wasn't my plan, maybe it was hers maybe it wasn't, there is so much we don't know about our soul and where and why we come here. How come Liv is sick and Harper isn't? They both were created from the same womb? Science will say it's genetic, I love science but there is so much that we still don't know. I have asked myself why so many times and I have to accept that my truth is based on what I believe in. Right now I believe I have to find the meaning and possible give it meaning.
Coming into my 37th year I will continue to work through the grief and pain that I have denied for so long. I will invest more into myself than ever before. I will stop denying my pain to protect her because in the end by not healing my wounds will only make hers deeper. I will continue to wholeheartedly love them, myself and be the woman I want to be while being the mother I need to be.
Authentically,
Erin Little
this article is not edited on purpose so if you have concerns or unkind comments about my grammar please go judge yourself first or if you are willing to volunteer to edit let me know.