One month down. Honestly, it has been a blur. It’s like time stood still and was on fast forward at the same time. I think I floated through the first week, then reality slowly started to sink in. I can’t even explain the pain of not having Dylan physically present with us. Jeff, Mason, and I all seem to be on our own emotional roller coasters. One day we’re doing ok, the next, we could be down in a hole. There seems to be no rhyme or reason. I slept with Dylan almost every night since she was diagnosed, so the nights are especially difficult. I’ve had several nights where I’ve woken up in a panic, trying to save her. We miss her so much.
At the same time, there is relief. I don’t miss the cancer. I don’t miss doctor appointments, MRIs, emesis bags, PICC dressing changes, endless pills. I am glad Dylan is free from that.
Jeff, Mason, and I are slowly discovering a new normal. It feels empty and quiet, but we are finding our way. We continue to work with a great counselor and still believe you have to fight to choose joy in life. I’m thankful for the understanding Jeff and I have with each other. When one of us is down, the other one will bear the burden of life. We deal with grief very differently. Jeff throws himself into work, while I often find myself paralyzed. I’m trying to be gentle with myself and honor what I need each day. I need a lot of time alone to process and think. We both weep when we hear of other DIPG kids getting diagnosed or coming to the end of their journey. We will continue to fight on behalf of Dylan and all DIPG children. (The foundation is established – we are still waiting for Facebook to approve us as a nonprofit.)
If you see us out and about, we ask that you treat us normally. Don’t be afraid to talk to us. Don’t be afraid to talk about Dylan either. And please don’t be afraid if we ever cry. I always appreciate hearing your Dylan memories and stories. We continue to thank you for all the love and support you gave Dylan and us. We have felt the love from near and far. We know Dylan is still with us, free from her broken body.
Because it looks like we will not be able to gather in large groups anytime soon, we are working on a virtual memorial. Eventually, we have many ideas to honor her, including a bench on the Discovery Trail.
An Ugly Pair of Shoes
Author Unkown
I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.
I get funny looks wearing these shoes. They are looks of sympathy.
I can tell in others’ eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes. To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes, I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am. I will forever walk in the shoes of a woman who has lost a child.