Each month The Arch Foundation publishes our Caregiver Corner series where we will share a window into the journey of a caregiver. Our hope is to share these #brutalybeautiful lives and stories to educate, bring awareness, and help build our community of exceptional caregivers.
If you have a story of your journey of being a caregiver, we would love to share it with our community. You can submit your story for a chance to be published through our contact page.
Here is Tiana & Quincy’s story…
I look at pictures of myself before my daughter’s diagnosis and I think: what would I tell that woman if I could go back in time? That woman who looks like me, but her face has far fewer lines and her eyes are brighter. She looks like me, but we are not the same person. What advice would I give her?
My daughter Quincy was diagnosed with a rare genetic brain disorder called lissencephaly, on Halloween of 2011, 5 months after she was born. Lissencephaly means “smooth brain” and causes significant developmental disabilities. It is of unknown cause and although it can be hereditary, it was not in Quincy’s case, just a mutation on one of her genes that happened sometime between 9 and 12 weeks gestation. Some kids with this condition have brains that can’t even tell their lungs to breathe and they die very young, while others live on into adulthood, although development is severely delayed.
At the time, there was little they could tell us about what her future would look like and so my husband Alex and I made a pact that every decision we made from that point forward would be with two priorities in mind: to give Quincy as happy a life and as healthy a life as possible while we had her. The days after her diagnosis, nursing and holding a baby that would forever be a baby even as she grew, her unknown future stood in front of me like the never ending reflection of a mirror being held in front of another mirror.
I remember selfishly thinking, it will never be just me and Alex again. Isn’t the whole point of being a parent to help them launch? Quincy would never launch. She would remain firmly planted in her wheelchair between the two of us for life. No world traveling after retirement. No trucking around the US in a motorhome. But as with most things, I was wrong about that too. Quincy passed away in her sleep when she was 5 and a half and my sweet child who would never launch, launched before any of my other children, into the unknown, putting an end to that never ending reflection of her future.
I kind of look at my life now in three parts: life before Quincy’s diagnosis, life before Quincy’s death and life after Quincy’s death. I have lived what feels like a hundred lifetimes in my 38 years but I have learned a tremendous amount as well.
It’s not what you thought it would be, but who do you think you are anyway?
As parents, intentional or not, we have expectations of what our children’s futures will look like. As I looked at little ballerinas, as I went to children’s birthday parties and kindergarten orientation, I mourned that make believe future over and over again until finally, finally I stopped. My mom would see her other grandchildren running around as she would feed Quincy in her wheelchair and tears would stream down her face. “She should be running around with them.” Something shifted in me at that moment, perhaps because I could no longer picture Quincy any other way than she was. “Mom, Quincy is exactly as she is meant to be. She is perfect as she is.” None of our children turn out as we want them to. She may have said “screw you” to ballet or run off to be in a circus when she was 14. Our children are not extensions of ourselves, they are their own unique story lines that intersect with ours. When Quincy died, her older brother Tucker, only 7 at the time, so prophetically told me: “I actually wouldn’t want Quincy to come back. Because if she came back, she would be in pain still and suffering, and if she came back healthy and walking, she wouldn’t be Quincy.”
Take care of (all) your relationship(s)….
Being a caregiver really involves everyone in your circle and that circle will become new and different. It will expand in some ways when you meet parts of the community you never knew existed and you may lose some people who no longer know how to support you. That’s ok, by the way, it doesn’t make them bad people and they may return when they sort through things on their own terms. Being a caregiver can feel like it eclipses all the other things you used to be: a wife, a sister, a friend, a mom, a co-worker. But all those roles in our life are important in remembering who we are and how we show up in the world. Also, the people who know you as those things are all holding hands to form your circle when you need it the most. There were 500+ people at Quincy’s funeral. A 5 year old girl who couldn’t talk or walk had 500 people come to say goodbye. The love that emanated from that room lifted Alex and I up and it came from all those other roles we played in our lives and they, in turn, had been touched by Quincy’s life. That’s the cool thing about circles, they can go round and round for eternity.
Alex and I also made it a point to stay connected. It has been so incredibly difficult but we continue to be successful with it. The toughest part for us has been that we are rarely at the same stage in our feelings at the same time. When Quincy was diagnosed, it felt like a dark cloud hung over Alex all the time and when he would travel for work, the cloud would leave and when he came back, the cloud would return. I was the opposite, not wanting to waste too terribly much time feeling sorry for myself, at least not to the external world. I finally had to tell him about the “cloud” and that I didn’t want to live in a sad house, that it wouldn’t be good for Quincy or Tucker or any of us. In hindsight, Alex was mourning and I was pushing things down. The cloud passed eventually. When Quincy died, it was the exact opposite. I was now the cloud and Alex was pushing through and so it goes with us, an ebb and flow and we just allow the other to be wherever it is we are.
It was never a burden…
I have held my child who could not hold herself up in a shower as she threw up over and over again. I have slept in chairs in hospitals more nights than I care to count. I have cleaned poop out of hair. I have fought with doctors, had nasty interactions with people about handicapped parking spots, I one time said a thing I regret to a mean child. I have smiled and told people everything is great when things couldn’t have been further from great. We have nearly gone bankrupt. I have pushed through my weak stomach as I helped Alex change her feeding tube. One night in a hotel room I literally paced the room rocking and singing Quincy for 6 hours straight so her crying wouldn’t wake others. There is nothing I didn’t do for her and I would do it again to infinity to be able to hold her one more time.
I have seen the pitying eyes of strangers that saw us. I have had people say, “God gives his hardest battles to his toughest soldiers” and I have had very well-meaning people say, “I could never do it” with a tight squeeze to my hand. I am not any stronger, better equipped or a better mother than anyone else, I have simply played the hand I was dealt even when I have felt like folding.
Taking care of Quincy has been the toughest, most rewarding, cruelest, loveliest, most heart-breaking, amazing thing I have ever done in my life. Ever. There are still mornings when I go to the cabinet to reach for her seizure medicine or wake because I think I hear her crying in the night. Our souls are forever connected and I know she’s caring for me now.
So, no, I am not the same person but I also wouldn’t want to be. That person didn’t know Quincy or my other children and she certainly didn’t get to feel the immense, intense and expansive love of being someone’s caregiver. Or the relief when it was gone or the guilt at the relief or the aching void of the absence of it. They are complicated feelings but I think that’s how you know it’s love.