Perhaps the butterfly is proof that you can go through a great deal of darkness yet become something beautiful.
In my opinion, a snow day is the perfect opportunity to organize all things you just never seem to have the time to. I approached the pile of clothes hidden in the corner of my laundry room with vigor. You will find a home today! I thought as I organized the clothes by size and season. With three girls, the clothes we buy certainly get a lot of wear. And then there are the “special” things we buy specifically for each child and their preferences. Last summer Lea saw a white denim jacket at the Gap and wanted it. Secretly jealous it was not available in my size, I purchased it for her. Today as I rummaged through the pile I found that jacket… and realized she never got to wear it. The one time she asked me to put it on her last summer I said no. We were going to an outdoor pizza and ice cream party where it would be a magnet for stains.
I pulled the jacket out of the pile and started to cry as I thought back to that moment. I feel so terrible for not letting her wear this jacket I thought to myself as I stroked the perfect white fabric. Little did I know, it would have been her only opportunity to wear this as a few weeks later she would be diagnosed with DIPG, be given two weeks to nine months to live, and quickly outgrow all of her clothes, including this white denim jacket. More than four months on steroids has put more than twenty pounds on her small body, left her with deep purple stretch marks from her waist to her calves, as well as a closet full of clothes she is unable to wear, including this jacket.
So many everyday experiences are painful. Like packing up Lea’s clothes. Or thinking about plans beyond one month from now. Or when people talk about the summer and wishing it was here (like I usually do in the bitter winter months.) Or hearing the words “happy new year.” I don’t feel happy, and I sure as hell don’t want this year to be here. I wish I could stop time I thought as I watched the ball drop snuggled next to Lea in my king size bed. 2018 will either be the year Lea beats the unbeatable because of a miracle, or it will be the year we bury our little girl.
A woman who lost her son to DIPG in October after a 9 month battle wrote this on New Years Eve. It was as if her words could have been mine…
My initial reaction was that 2017 was the worst year of my life. But when I think back over the last year it wasn’t. I had the worst heart break of my life. But we made the best memories in 2017, we loved so much in 2017. We realized how loved we are by so many. After a tense fall where our country seemed so divided we have seen so many acts of kindness and people reuniting. We have fallen in love with our community more than we ever imagined. People that we knew so well and people that we never even met supported us through our darkest days.
We certainly know about dark days. I feel like every day is dark, with moments of light. On a daily basis I look at Lea and scream in my head “DON’T LEAVE US!” On a daily basis I look at her sweet face and wonder how I will go on without her in my life… or how this could happen to Lea and our family. I have those moments where I feel sick to my stomach over our situation and completely panicked. It kind of feels like I am drowning, very quickly. Once I catch my breath, I always pray. I pray for peace first and then a miracle. I can hear God speaking to me. He usually tells me to trust Him. I usually argue back, telling Him I do, but this is so hard… and why me… He usually tells me He won’t leave me, that He is with me always. I know all of this and feel all of this, but I still don’t understand it. I know He is faithful and will guide us through this, even if Lea is not miraculously healed. Even if He gets her. Hearing people tell me that “God only gives you what you can handle” makes me want to punch someone. My God did not give this to me. My God did not give my daughter cancer. My God does not work like that. He will use this, but He did not do this.
As you can tell, my anger is still very much alive. It is tempered by sadness, and served with a side of jealousy for everyone living a normal life with normal problems. I am also in this place (that I can’t stand) where I have less empathy for anyone going through anything that isn’t at this level of awful. Oh yea, well your kid is not dying so… And I hate that I feel that way. I want to care, I just don’t. I want to get excited about the good stuff, I just don’t. This monster has taken a piece of me away.
It has also taught me lessons about wearing white denim. Living for today, present in the moment is one of the many things Lea’s cancer has taught me. The mom I am today would let her wear white denim anywhere she wanted, to any party, eating any amount of pizza and ice cream.
How is Lea? Lea is stable. Physically no better, but no worse. She is still unsteady on her feet and loses her balance easily. Her right side is significantly compromised and she has become a lefty. She handled two steroid drops in two weeks like a champ and is currently taking .5 mg/day. We have hopes to get her off of them completely. With this drop in steroids we are seeing more of her incredible personality return. We head back to Boston next Friday for treatment #4. Three weeks has never felt so fast and I am dreading Feb 1 where Lea will have a sedated MRI to see what the tumor is doing. I would rather savor each day and live in ignorance, handling the situations as they arise rather than knowing if it is growing or not. That trip we will spend our first overnight as Lea will have her MRI one morning and treatment the next.
How are you? I am someone who always wishes winter away, and yet I find myself petrified for the summer to come, unsure of what it will bring. Each week that passes I get more saddened by this situation. She is such a special child. A true gift to me. It devastates me to think of life without her. I am devastated. Every day.
The actions you take as a DIPG parent are very personal. Many have reached out with suggestions and I know they are all well intentioned. If there was a cure, we would sacrifice anything to make sure Lea had it. Right now, even the best experimental treatments (Mexico) are just life extenders that come at a very high cost in many ways. I want Lea’s time left here to be in her home, surrounded by people she loves. I want her days to be filled with joy and things she loves doing. I don’t want it to be spent in a hospital or on a plane. This is a personal choice and one I have made peace with.