Alexa "Lexy" Deitchler (27), Willow (3), and Olive (1)
Minnesota | Photographed in Portland, OR
Lexy shares -
"My loss experience has been one that I hadn't realized happened before going through it, grieving the loss of a life I had imagined. Our oldest daughter was recently diagnosed with Rett Syndrome, a non-hereditary spontaneous genetic mutation. Many of the doctors, therapists, and other professionals we've sought out over the past year and a half hadn't heard of it either. All of a sudden, our idyllic little baby was losing bits of who she was and there was nothing we could do to stop it.
Rett Syndrome has since taken much of her purposeful hand use, her voice, and much of her mobility. The most devastating part of this disorder is that many of these sweet babies develop normally for their first year of life before a drastic regression period. Her future is unknown, but until the cure makes it out of the labs, she will continue to be severely limited by her disability. Coming to terms with the test results was easier than I thought it would be, but I think it is because our "D-Day" took so long to come.
We are blessed that her cognitive abilities are not impacted and we get to spend our days with our bright, hilarious and brave world changer, but knowing she understands everything and feels so deeply makes it so difficult as a parent to watch. She's trapped inside of a body that won't cooperate, no matter how hard she tries and this is one thing that Mama just can't make all better.
Becoming a mother finally gave me a sense of purpose. I have struggled with a slew of mental illnesses that have told me I wasn't enough and never would be, and finally, I was. I was enough to grow this perfect little human. I was enough to give her a peaceful entrance into this world and enough to keep her alive through just the milk my body created for her. I no longer had the time to sit and stare at my imperfections because I was busy showing my sweet baby how wonderful and whimsical and amazing this earth she now got to love on was.
I slowly started accepting the things I never liked- my hips carried the extra weight of another human and opened up to make room for her to exit her first home. My breasts now had a purpose and were exactly the right size for my daughter's needs. My stomach was a little softer, but it was the perfect amount of give for my baby to feel comforted. My face was still my face but I had no time to try and make it look differently because I'd rather spend that time looking at my daughter's. I now had an example to set- radical self love because that's what I wanted for my daughters to experience. So, I got to work starting to love this earthly home I've been given!
It was brutiful, a term I first heard from Glennon Doyle, that means brutal and beautiful are woven together so tightly that they can't be separated. With my first, my recovery was long and painful and I was so angry that no one had told me it would be so hard! I had had a beautiful, peaceful home water birth and was ready for my lying in. I had the most magical, beautiful new baby and OWWW why did everything hurt so much? Breastfeeding, uterine contractions, healing, and adjusting was supposed to come so easily because I thought I was prepared! I threw myself into my new head over heels love infatuation with my baby, dutifully took my magic placenta pills, and slowly, I was myself again. I was open and honest and raw with all of my friends because I couldn't believe that our society had it so backwards- that pregnancy and delivery could be so magical and dare I even say, nearly pain-free, but that the postpartum aftershock is hardly ever even acknowledged! We are expected to just bounce back and carry on with our balancing act of doing absolutely every thing for every one all of the time.
The second time around, I knew what to expect and was prepared... but then thrown for a loop when my recovery was so dreamy that my midwife shared my experience with her other nervous expectant clients to calm them down. It was so beautiful and wonderful and so damn brutal because we had no clue what was taking our oldest daughter from us. I spent so much time with both of my babies strapped to my body trying to calm their cries, learning how to breastfeed an infant while soothing a toddler with no words. We moved back across the country where we didn't know anyone and I had to make it through her regression the best that I could. I look back now and truly don't know how we did it, but that's just how parenting goes, isn't it? You do anything you can to make your child's life the best it can be no matter the circumstances and process your pain when they're not looking.
I so enthusiastically believe in the power of storytelling. Taking away all of the illusions of perfection and just exposing who you truly are is terrifying, but also so unbelievably empowering. Self love and rejection of society's structures is one of the most radical things I can do with this life of mine and if I can leave my children and their children and their children one bit to remember about my life, it's that I did everything I possibly could to make theirs better.
My truth is that there is so much more to living than being alive and that you can never, ever predict what the future will hold. The things you think you could never handle are thrust your way and you find out that you can indeed handle them and even bigger things may be coming. Every single moment is a blessing but it is okay to have real emotional reactions to those moments and carry that gratitude for this life with you while still being upset. Your pain might just help someone else get through it too if you're able to bravely share it with them. We truly are all doing our best at any given moment but that doesn't mean that there is nothing left to learn. Our purpose is to love one another and hold space for one another and heal our wounds so that our children don't have to carry our same burdens. Be kind. Be even kinder than you think you need to be, because at any given moment that might be just what someone else is needing