Author Archives: shaunaemmons

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.

http://m.sturtevantfuneralhome.com/obituaries/events?obituaryId=3989746

 

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Anticipatory Grief

Anticipatory grief is a real thing but there is still no way to prepare. Today waves of grief have hit hard.

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January 3, 2019

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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….


Dec 31, 2018

This bracelet represents Mike as a hospice patient.

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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. 

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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.

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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.

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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. 

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Here is a throw back to one year ago when they went out on a lunch and haircut date!

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Parent guilt!!

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.

 


Anniversary

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.

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The emotional toll

Having a disabled husband takes a toll on ones emotions. Him being “terminal” BUT outliving expectations – that throws in a unique mixed bag. If I don’t appreciate a moment with him, I feel guilty. If I feel burdened even for a moment, I feel like I WILL feel guilty.

Little things are big things.

We are visiting family and we all sat around and played cards. Except Mike.

Some went out to a restaurant last night…except some of us…Mike couldn’t go and he couldn’t be left alone. I couldn’t help but think of how it SHOULD have gone (in my mind) The teen could have watched the littlest and us adults could have enjoyed an evening out together.

Our families all went to the park yesterday. Half of mine had to stay home. Again, because Mike couldn’t go and couldn’t be left alone. I’m hiding in the bathroom because I couldn’t hold the tears in. I put a smile on my face and have laughter in my heart….but….everything is emotionally hard.

Being around couples and families is hard. Mike and I will never have double date nights again. We won’t have game nights. He can’t have deep conversations. We won’t do fun vacations and getaways.

When he can join us, he won’t be in the pool with the kids, he won’t be throwing a football or running around the playground. He won’t be lifting the kids up to reach the things that can’t reach, and he won’t be there to catch them if they fall. My 9 year old feels the pain of that reality. 

Every fun thing I do is missing half of my heart. I can smile and laugh and have fun. But that missing piece because Mike can’t experience it with me always hurts.