Recently I have received a few comments from readers deeply concerned for my mental health and well-being. I honestly believe they care. They are reaching out to me because they see something disturbing in my posts and I feel the need to address this concern and provide a little context.
Firstly, thank you. Thank you for reading my posts. Thank you for coming here to see how I am and to take time out of what I know to be very busy lives to reach out to me. I am deeply grateful for the concern as I have been so deeply grateful for the support I have been offered since beginning this blog.
Secondly, I think it important to note that this blog began as a place for me to process my feelings and thoughts when we unexpectedly had a daughter with Costello Syndrome and all the very many special needs that accompanied it. It grew as she grew and developed as events in our lives changed, first with Willa’s cancer diagnosis and then her death.
Over this past year I have written about the grief I have been left with in her absence. I have used this blog again as a way for me to work through my thoughts and feelings. To explore what I wake up with every day, to try and wrap my head and heart around what is impossible, this loss, this overwhelming despair that comes when the most precious person you have ever known dies in your arms.
Thirdly, this blog is not all of me. It does not tell you that I wake up every morning at an early hour. It does not tell you that I work out every day, that I eat well, that my husband and I laugh at the dinner table. It does not say that I have been in therapy for a year. It does not list the many ways I daily help myself, help my husband and help all those around me navigate this new path. It does not seek to offer platitudes, nor does it offer answers for where there are none.
At the same time, I do hope something of my heart shines through. I do hope that the light that Willa left us with has not dimmed, that her spirit and the strength and power she gave me still find their way to these postings. Because I feel it. I feel it very strongly. It is exactly why I have not driven into the tree, why I have not crawled into the bed, why I have managed to avoid foreclosure, divorce, drug abuse, and the clinical depression you fear.
But let me be very clear about this. Willa’s loss is a nightmare I wake up to every morning. Willa’s loss is the weight I labor under every day. The tears are waiting to fall at every moment, the screams in my chest bulge beneath the surface. I soldier on in my life because she would be so incredibly disappointed in me if I didn’t. But I soldier on too because she taught me the value of life. She taught me that this thing is a gift we are not all lucky enough to enjoy for long. So I get up, I get dressed, I eat, I work to propel myself through my days the best I can, as a testament to the love I feel for her every minute and the strength I have to honor that love.
Another commenter asked if I can do something positive by which to remember her. If she liked animals, then volunteer at a shelter etc. I think it is a beautiful suggestion and very helpful for so many people to make something of their loss.
Willa loved to read. She loved books. Willa loved books from the moment she was born. And so this is what I do. I write. I write to bring myself closer to her, to talk to her, to throw the rope across the expanse that separates us. I write to bring her back to this world, even if for a moment. I write to make her real again, to introduce her to those unfortunate enough to have never met her. I write to keep her alive, and myself with her.
When you lose a child you die. When you lose a child with special needs your life dies with you. Your future. I am working to rewrite my story to allow for the change. But it is going to take a long time. It is going to take the rest of my life. I have made peace with that fact. It is the only honest thing I know right now.
When you lose a child you do not go to therapy to find a solution. You cannot fix this problem. You cannot find a diagnosis and therefore, there is no cure. You go to therapy to develop methods of coping. You go to talk. You go to say things you cannot say anywhere else. I fear that I say too much here. I fear that my grief is overwhelming and difficult to understand.
But I cannot give up on the task at hand. I write invisible cities because I see the need for a voice to come out of these places, even if it is ugly. I see the need for us to be able to talk openly about things that are never discussed. Be it the realities of having a child that is never and will never be like other children, whether it is about the stares we catch, the conversations we overhear about children being better off never being born different, whether it is about babies with cancer, or whether it is about the ugliest thing of all, the most unnatural of realities, the death of a two and a half year old girl who smiled and blew kisses up to the moment she died.
We need to be allowed to talk to each other. To hear each other. To listen to the experiences of mothers and fathers who live this every day. We have to offer support to each other and we sometimes have to offer the suspension of advice. Because I can give you nothing but my own story. I have nothing to say to your grief, to your loss. I have no answers for your struggles or your fears. All I can give is another voice and a hand in the dark when you need it. You have given that to me too, just by letting me exist and certainly by letting me say what I need to say. I will not censor myself here. I cannot.
Because readers I censor myself every day in my life. I do not tell people about my daughter if they do not ask. I do not talk about my pain with family members because they are so incredibly scared for me. They want so desperately for me to be happier again. And because they hurt so deeply themselves. I do not talk about the shocking and unwavering pain I feel when I see a mother yell at her kid in the grocery store or the knife in my heart when I see children playing. Because it is too much. It is too much to tell people, to bring them into. It is not fair to compare the daily concerns of parents everywhere to my life now. We live, indeed, in separate worlds. So I will continue to write from my invisible cities. Because I have to.
Do not worry about me. I have learned to take on my grief, to wear it like clothing that cannot come off. It is not always a terrible thing. It keeps me warm. It even makes me feel most like myself. It is the authentic me, the honest one.
Remember always that grief is a ridiculous burden. Most so because of how impossibly individual it is. No two people will ever bear it the same way. No one knows what another really feels like, how it feels in their respective heart. Remember too that there is a terrible myth that time heals this. It does not. Time does nothing but move forward. There is a distinction to be made between healing and acclimatizing. One becomes accustomed to the hurt but it never fades, it never disappears. Any parent who has lost a child will tell you, that there would be no greater loss than the loss of the grief, it is the connection to our beloved children. It is the pain in our side from where they were taken and though it may be brutal it is our precious burden.
Thank you. Come back and visit me. I promise to remember the light, maybe even to write about it more.
All in due time.
