Lately I have been riding my rollercoaster up and down, around and around. Some days there is lots of sunlight others are filled with blech and blah. I was sitting Tuesday afternoon, snuggled into the chair in the living room, feeling that 500-pound person sitting on my lap holding my arms down. The weirder part of that feeling is that I sit in a chair and a 500-pound person is definitely sitting on me, but there is no one there. Grief and missing were sitting on my lap, holding my arms down… making me feel so tired and worn down.
It has been an emotional few weeks for me, I don’t even know what the triggers are. I think there have been many big BOOMS lately… a friend’s child was diagnosed with DIPG, a close friend battling a mystery disease, a ‘best day ever’ young lady relapsed and a friend’s brother went to heaven. I am normally so much better at navigating these messy waters… but this time I am doggy paddling to just get to a dock.
I keep fixating on the darker part- Life is Hard. Life Hurts. Life is messy. It isn’t like me. I am not a sunshine and rainbows lady, but I know that light shines through darkness, life is a beautiful mess and in all of it’s hard- life is good. I work to see the light in the darkest niches, the spots where it is believed no light exists. I embrace my grief, it is a piece of me that I don’t want to lose. If I lose that part, will I remember she existed? My heart is feeling all of the missing, the brokenness. I hear a song, I cry. I talk about Madeline to teachers she had and I choke up… I sit in my lazy boy with the 500-pound person on top of me, holding my arms down. I am not normally like this, but for now I am.
I didn’t realize it would hurt to read studies of promising DIPG research. Why would it?!?!?! I have used everything I have, as have so many other parents and patients to change this for others. I feel elated that things have changed since 2012, in fact almost all of the work that has altered the understanding has been done since Madeline died. In only 5 years… so many pathways, genes and ideas have developed; it is amazing. Why does my heart hurt?
I am slightly trapped in the ‘what if?’ stage of grief. I am in the part where I wonder ‘what if she were diagnosed in 2018, would I have had more day with her?’. I feel inside me that much is going to change for these families and soon (though not as soon as we hope) DIPG will not be a terminal diagnosis. I feel a lot of guilt for this feeling… for feeling sad that she isn’t going to be here to live longer, better or achieve NED. I think I might even feel jealous that others get this opportunity… not in a way that I am sad for progress, but in a way that I am sad that progress didn’t help Madeline.
This darker part is exhausting. The last week plus has been exhausting. The girls had competitions to prepare for and I, as per normal, ran around like a crazy lady grabbing quick food everywhere. The temperature dropped, the wind picked up and the sun hid away… the ultimate builder of darkness inside me is surrounding me with gray darkness and really freakin’ cold winds. I have been over worked, over busy and just ready for a break. So… the promise of sunlight and losing an hour this weekend is encouraging.
Most of the time I am fully aware of the costs of joy and love. The costs of joy and love are directly related to the pile of pain loss those can bring. I am aware that all of my joys have been worth their pains, whether I am reflecting on Madeline or the friends who lied and had relationships with my then husband. The joy they brought into my life is directing related to the pain, which was immense on many levels…but it was worth it. Knowing someone, loving them and experiencing life together is ALWAYS worth the pain of when they are gone. Only lately, I just feel a lot of the pain and not so much of the joy. I chalk it up to a regrieving period, one that my brain goes back over things and refocusing on the missing differently. Watching my 2 girls work hard and compete in Odyssey of the Mind… but there were only 2. There is a whole team that Madeline would have fit on, Amelia used to create with them. Seeing them grow right next to Amelia and Lucy takes a bit of toll on this old momma. We are preparing for Lucy’s First Communion and once again my girls here on Earth tackle one of Madeline’s last’s. Madeline would be moving up to middle school next year… a whole new world. I remember how excited she was to ride the bus, I imagine she would hate getting up an hour earlier and catching a bus for middle school.
I know for my girls there will be many regrieving periods, moments that they are more aware of something Madeline is missing from. I imagine their accomplishments will remind them of their missing sister. I have never lost a sibling, I am very lucky. This is their journey though, and I hope they can stand in those regrieving times and remind themselves that her joy and love is worth all of the pain. I don’t know why I forget that this could be a regreiving period for me… I have found that I am much better at being aware of my girls and keeping up with their feelings… I sometimes forget about mine.
I was sitting in the teacher’s room the other day, talking a little about Madeline. I had left tee shirts from an event for her teachers in their mailboxes. She was thanking me, and I felt it. I felt a tiny bit of my regrief surfacing at a moment I didn’t expect it and didn’t want it to. I balled my eyes out on several occasions this week… it has been a strange week. I felt for those mommas who are headed back into the cancer battle, I felt for those mommas who have a child with DIPG to guide… and for the ones who babies went to heaven this week, we are not supposed to outlive our kids.
I walk this journey of losing Madeline, my daughter, with many others. I know in myself and am reminded my amazing counsellor that losing a child(ren) is the HARDEST thing we can have happen to us. It doesn’t matter the how’s or how old’s… our children own a piece of us from the moment they are conceived. If their heart stops beating and they head to heaven at any part of their time here… it hurts just the same, only different. There are moms who never get to meet their lovely before they are gone, moms who never got to say goodbye, moms who watched their child fight and hurt, moms who had to let go… it all hurts the same only different for each of us.
I am regrieving, not that I ever stop, but I imagine some trigger pushed me to feel some things much deeper. I am trying to stand in it and ride the rollercoaster… to lean into the turns, put my arms up when I’m falling and let myself scream or smile. I don’t know why I am living in a Hallmark commercial right now, but don’t be crazy surprised if my mascara looks crappy. Life is hard. It is so very hard… but it is so very good too. Lean into the ones who ride the rollercoaster with you… the ones you know hold a piece of your grief and your lovely. Cry. Remind yourself that life is good, even when it is hard. Steer closer to light, chose a rollercoaster that stays light… the more dark you let in the harder it is to see all of that light, to remember the value of joy and love.