As I am typing this, it is 1247 AM MST. Tony has been awake since 1123 PM. So I’m writing this on three hours of sleep. The last two nights before this one, he woke up at 206 AM and 156 AM…and didn’t go back to sleep. We talked a fair bit about this last month because we can’t really separate me out from these circumstances. Sometimes so much of my identity has been stripped away by our experiences that I want to give voice to some of the impact to my personhood and mental health in all of this. Yes, the primary disabilities and symptoms are Tony’s. But it is important for everyone involved to understand the impact all of this can have on the immediate loved ones and caregivers.
But what about Hannah in all of this? Hannah is and always will be incredibly important to us and to me. She is more deeply loved than I can say, and has been from the moment I found out I was pregnant with her. People told me I should temper my hope and joy, reminding me I could miscarry. Certainly I understood what the possibilities were with that, but I knew in my heart and felt it in a way beyond being reasoned with that not only would this sweet child be born, but she would also be a girl. I am still filled with gratitude for modern healthcare in all of this. Our girl was placed in my arms for the first time after having been delivered safely via an unplanned emergency c-section.
I have been blessed to be her mom each and every day for more than 13 years now. I think Hannah’s experience and voice in all of this are incredibly important to be heard and acknowledged. However, in writing so little about her for the past several months I honor her wishes to “speak” publicly – or not at all- in a manner of her choosing about her own views and experiences. Having made some of the same choices as I have this past year, she and I have had some similar experiences. Neither of us would change a thing about certain choices, but I know for me personally, I have definitely gone through more pleasant things on the interpersonal level. I am proud of her courage, her grace, and her commitment to doing what she believes to be right- and I am choosing to respect her choices to walk through all of these circumstances in the way that works best for her with my unconditional love and support.
Much of what we do together right now, therefore, remains curtained off behind the scenes at her request. You are welcome, of course, to imagine yourselves in her circumstances, but I caution you that the hints of what you think she might feel may or may not accurately reflect her own perceptions about these experiences. All that being said, I have been given Hannah’s permission to share a little bit during the next couple of posts.
With so little sleep and a social circle that has been functionally decimated, I owe something of my emotional well-being to a gift that came from Hannah sharing her world with me. For many years now, any makeup routine I had was utterly basic and simplified. This past year she opened my eyes to how much more artistic I could get with my eye shadow in just a few minutes a day, which has become an emotional self-care lifeline for me. I am a person who processes a lot of life’s challenges through creating art, and my current schedule really has stomped out the life and time of most anything else I used to do. So I do something different and colorful with my eye shadow nearly every day and it has given me just enough connection to my creative side to emotionally weather some tough things. I have also made sure to directly express my appreciation to Hannah for her role in all of this. She inspires me in so many ways to work harder at being better, and I am so grateful for her.
Hannah is her own unique person, yet she also has enjoyed artistic hobbies since she was very young. Several years ago, she came down the stairs, informed me she was starting a shop, and spread out across the counter a collection of drawings she had made. I was informed the price per piece and asked if I wanted to buy any of them. She looked up at me, quietly waiting for my answer. I will forever treasure the memory of her glowing eyes when I said that her drawings were worth at least double what she was asking for and bought them all with this newly revised price.
Sometimes, when we are doing therapy with Tony either at a clinic or at home, Hannah takes pictures that are expressions of her creative vision rather than documentation of what we are trying to accomplish. I currently pay our sweet daughter for any picture of hers that she is comfortable with me using on this blog, and recently I asked her if I could do a small in-post gallery with some of her more recent non-therapy related photos.
She produces enough artwork these days that certainly I cannot afford to purchase every piece. The pictures used for this post are the ones I purchased to share with each of you, plus a couple photos I took of some of her recent drawings (shown below). All have been posted with Hannah’s permission, and any of them could be removed at her request should she want that at any point in the future. The outdoors shots were taken during a music therapy session, and she was wanting to frame them in such a way that the surrounding city wasn’t as evident. She positioned the shots of some of Tony’s therapy toys in a way that was designed “to convey strong emotional messages.” (as per Hannah herself)
What isn’t pictured is how much Hannah means to me. Every artistic medium available is lacking in sufficient depth to portray that. And now, it is 151 AM. Tony is still awake, but I am going to end my writing for this post so that I can help him use the bathroom again. I hope each of you has a week where you can find something- big or small- to help you feel like your spirit has been nurtured.
