It’s been two months. Nothing about our journey has been “normal” or “expected.” I’m trying to find a balance of honoring him, grieving that chapter of my life – and also knowing that there is still so much life and joy to be experienced ahead as I move forward. (Not move on, but move forward)
I can’t find words. Or maybe I’m afraid of judgement in any words I post. I realized that there will always people who think your grief is wrong. Too much, too little, too long or too short. But there is no cookie cutter answer to grief. No right or wrong way. No simple formula to get out pain free.
So far I’m dealing with mine privately.
I have had days in bed crying. I have had moments of joy, hope and laughter. I’m unapologetically letting my journey move forward and as I’ve helplessly watched my life fall apart….I’m hopeful that it will beautifully also be falling into place.
Grief looks like
days of crying.
Grief looks like giggles and snuggles with the best friend.
Grief looks like days in bed crying.
Grief looks like busy….to avoid silence
Grief looks like new friends, old friends, and filling the house with a village.
Grief even looks like a hike and mountain top experience.
My grief is like waves. I have been silent with my grief, but it’s there.
I’ve shared so much, it only makes sense to share the end of the story. We held Mikes hands for hours as he took his final breaths here on earth. He is in heaven. 💕 His last breath was 11:43pm January 4th, 2019.
Anticipatory grief is a real thing but there is still no way to prepare. Today waves of grief have hit hard.
Don’t for one second question God on this situation….go back to Day 1 of the blog and know that God has brought healing and restoration to our family.
And then listen to this song….
This bracelet represents Mike as a hospice patient.
This is mostly just a copy and paste from an update I did, but I wanted to make sure I updated everyone here too. We have switched back to comfort goals vs rehab goals. He hasn’t walked since the 13th. He hasn’t been able to talk much at all since the 20th. He’s been sleeping for days, only becoming alert for a few seconds here and there. He has only had a few bites of food in the last few days. Swallowing is still an issue so he has to have thickened liquids or puréed foods.
In technical terms, leptomeningeal carcinomatosis is what is suspected because his MRI showed extensive leptomeningeal enhancement involving the left posterior frontal, left insula, left temporal, and left parieto-occipital lobe. The spinal tap results may give us an official diagnosis tomorrow, but unfortunately he had a traumatic tap and they were unable to get much fluid for testing. The doctor said today that he has had a rapid decline.
We aren’t sure if he’s going to go to the Veterans Hospital for inpatient hospice (it is a nice facility), another inpatient, or if he will come home. I’m just trusting the process. If something is open and the process goes smoothly, then I trust it’s meant to be for him to be inpatient…if not then I’m meant to finish this race and close this chapter with him as his caregiver at home. The doctor did tell me this morning that she is taking the decision out of my hands and looking for inpatient options (unless I really am adamant of course.)
It’s been a crazy couple of weeks. I was out of town when he was admitted to the hospital and on the way back my van was totaled. I was completely stopped on the interstate when a man in a truck dropped his cigarette and didn’t even notice I was stopped. Thankfully he swerved at the last moment and there were no injuries. Just the totaled vehicles. I haven’t had the emotional energy to vehicle shop.
Right now he isn’t very alert but over the past few weeks I’ve gotten some good photos…I will share some…
We had a good visit with him on Christmas.
Our bestie Becky gave him some amazing pampering with a shave and a bath in bed. She did her magic tricks and even changed the sheets with him in bed. Becky continues to be one of the biggest blessings we could have never even knew we needed.
Here is a throw back to one year ago when they went out on a lunch and haircut date!
Sometimes I feel like I have failed my kids. Especially the 17 year old. He was 11 when his Dad was diagnosed….middle school. The past 6+ years have been full of cancer, hospice, his sisters teen pregnancy, having a newborn in the house, and his little sister. All of a sudden he is a SENIOR in high school and I feel like I completely failed him. He is so smart and his math skills impress me. Today he mentioned wanting to go to Virginia Tech and that he’d like to do something in the field of software design, computer science or electrical engineering. If Mike was well he’d know how to make that happen.
I’m laying in bed with lots of tears of sadness but also feeling incredibly thankful that I’ve had the chance to spend 20 years with Mike. Through the ups and the downs…I’m thankful.