A Very Post-Modern Family : 2015

Tuesday, December 22, 2015

A Christmas Letter to Willy

Dear Willy,

It's almost Christmas. It was your favorite time of year. I have so many pictures of you sitting by the tree and lying under the tree just staring at the pretty lights. I have pictures of you trying to roll into the nativity scene and the village we used to put under the tree. We used to joke that you were a big monster trying to damage the village and destroy the nativity as you rolled over on it!

I already wrote a blog post about the 11 amazing Christmases that we had you here with us. As I was going through all the photos from each of the 11 Christmases, the memories were amazing. We had some fabulous Christmases. Grandma Juanita always did up a fantastic Christmas Eve. She'd decorate everything so beautifully and we would snuggle under her tree and have such relaxing Christmas Eve's. Christmas Day we'd have Christmas at our own house. Other grandparents and friends would stop over but we usually didn't go anywhere. We had such fun spending those holiday days at home, snuggling, cozy, watching movies, and just being together.

We've all been trying to figure out how the holidays will work this year. Dad and Trish have a new house and they've been busy moving in and making it a home. It's big and beautiful and has a fireplace. You would have loved rolling by the fireplace. Ted and I are still in our old apartment. We're comfortable there so we will stay for now. I don't think I'm ready to leave the place you were last. I still find syringes and other supplies here and there and when I do I always cry, then smile.

Grant and Gabby are doing okay. They miss you but are relieved you are okay now. Gabby has a pen pal at the University of Michigan and they write letters back and forth. She wrote to her pen pal all about you. She told her pen pal you were "safe now." Safe. I hadn't thought of it that way. I've been too sad to really think of how you might be now. But I believe she is right. You are safe. You are whole. You have friends. I know you are with Grandma Juanita and Grandpa DuWayne. That makes me happy. I don't know how the afterlife works exactly but I know it's nice. And pretty. And you are whole. And you don't have any seizures. And you can breathe well. And you are safe.

We did what we had to do, here on earth, to make it to the end goal which is to deliver you, safely, to the next plane. Your stay here was shorter than we would have liked but we made our goal. We took care of you and worked as a team to deliver you, safely, to the next plane. I'm trying to think of this all in positive terms, you know, find the good and all that.

Willy, I miss you more than I can even say. Most days I keep busy and that helps. But when I slow down, the nausea, the sad, the grief comes back. It's the price for loving you. It's worth every bit. If you see me crying, or your dad, or any of us, don't be sad. It's just part of our process. We have good days and bad days but we are still all together, as a team, taking care of each other. Some day we will be back with you but it will be a while, okay?

We will come to visit your grave on Christmas Day. I know you really aren't there but I want to decorate it a bit and just say hi.

Merry Christmas, Willy. Your first Christmas in heaven. I can't even imagine how neat it must be!

We all love you so much.

Love,

Your momma and your family

Wednesday, December 16, 2015

11 Christmases

Willy lived 11 years, 7 months, and 25 days. Within that time frame, we had 11 Christmases with him. I always felt bad for those who lost loved ones around the holidays. It's like extra salt in the wound. I dearly love Christmas but it should come as no surprise that I'm having a hard time getting into the holiday spirit this year.

My hospice grief counselor called me yesterday to check in. There is a lot of grief support available and it's free so there's really no reason not to take advantage of it. We had a nice talk and I plan to talk with her again soon. During the conversation, I acknowledged that I have been focusing perhaps too intensely on Willy's last few hours. I know there's no rules for grief but it doesn't seem healthy, to my untrained mind at least, to focus that hard on the last few hours. I realize that since we packed 20 lifetimes into his 11 years, there are plenty of good times to focus on. And since I have a slight photo obsession, there are no lack of photographic reminders of all the good times.

This year Willy will spend Christmas in a much better plane. Regardless of your belief system, I'm fairly confident that most of us have some view of an afterlife. Whatever we're doing here, I bet Willy is doing it better there. Ted and I plan to go visit Willy's grave on Christmas Day after we drop the kids off at Todd and Trish's house. It will be sad. No one should have to visit their child's grave on Christmas Day. In preparation, I am writing this blog entry to help me remember the 11 Christmases he did have here with us. They were all fabulous.

Travel back in time with me to remember Willy's 11 Christmases.

Christmas 2004

Willy had just been born in March and diagnosed in July. He had recently been discharged from the hospital and was on ACTH for seizure control. ACTH is a steroid shot and it blows the patient up all plump as you can see from the photos. He was a cute, fat little guy, wasn't he?