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This is the blog I never wanted to write and yesterday was a day I never wanted to live. I am heartbroken to share that yesterday Mom passed away. It honestly feels so strange to even type those words. Just as it feels insane to me to wake up this morning and know she’s no longer here. And I know she’s in a better place and I know it’s better that she’s not suffering. But I just miss her so much.

She’s Amazing 💜

Today I looked down at mom as she laid in bed and told her I was sorry that she was going through this. She looked up at me and said “It’s ok honey, there are people that have it worse”. She hasn’t eaten in days and needs assistance doing basic tasks and yet she’s still thinking of others.

I don’t know why I’m surprised though. That’s how she has been through this whole thing. Don’t get me wrong she’s cried and been upset. But somehow she would always dig her way out. So many of her doctors and nurses over the past few years have complimented her sense of humor and the way she’s handled all of this.

She is amazing. And she would want you to know my dad is amazing too. She has dubbed him Superman over these past couple months. And he truly has been.

Thank you for all your love and prayers! 💜

Trying To Find The Light

When I first started this blog my posts were well…on the darker side. After reading one of my blog posts mom had a talk with me and told me she didn’t want all of this to turn me into a bitter person. She encouraged me to try to end my blogs on a positive note and that’s what I started to do.

I think that’s why I struggle to write lately. All of this is pretty dark. The nurse came by today and explained what we can expect as things move forward. Basically everything that’s happening now weakness, lack of appetite, sleeping and confusion will all continue to get worse along with some other things to look out for.

And as my heart is breaking I think of something Julian said to me a few weeks ago. We were watching TV and a commercial came on for Disney World and he said he wanted to go and I told him it would be a while before we go again (this was pre everything shutting down). I said the trip in January was Mimi’s last trip. He informed me that it was not. I started to explain why it was. He told me he knew all that. But that it wasn’t her last trip because in heaven you can go where ever you want. So Mimi would see Disney again when she goes to heaven. And then he pointed to his heart and my heart and told me she will always be right in there.

I’m thankful for all the trips we’ve taken with her. I’m thankful that Julian finds magic in even the darkest of times. I’m thankful for my brother and sister and my mom and dad. And I’m thankful for all of you. 💜

Progressing

Mom has continued to decline and today her nurse confirmed what we suspected which was that she was progressing quickly. I want to say more but I just can’t find the words. So I will end it here. Thank you to all of you for your love and support. It means so much. 💜

Home 💜

Our fierce leader has returned home. Mom spent about 24 hours at hospice house and decided she preferred to be at home in her own bed. The medication they gave her to regulate her bowels was rough and it made her pretty miserable.

Today we met with her regular at home hospice nurse and she brought along a doctor to evaluate mom. The medication and bowel plan they have put in place is something we all agree on.

It’s a tough situation because not only is mom dying but her GI system is pretty messed up. She has celiac disease, parts of her bowel were resected during her 2016 surgery as well as parts of her colon. Also the cancer lies with her intestines which puts her at risk for a bowel obstruction. So she’s either going too much or not at all. Which leaves her exhausted.

Thank you all for all of your thoughts and prayers. We truly do appreciate it. We are so grateful to have mom at home 💜

Hospice house

Mom was admitted to hospice house today. Her at home hospice nurse came this morning for her weekly visit and felt it would be best for mom to be admitted to hospice house to straighten out her bowels. They will reevaluate her in a couple days after trying some different medications and determine whether she can return home.

How’s mom?

How’s mom? Mom doesn’t eat much and she rests a lot and doesn’t have much energy.  Sometimes she says ridiculous things like she said “goo” instead of “honey” when replying to one of my texts.  So now to make us laugh she will respond “ok goo” or “love you goo”.  We have a schedule going and work like the best dysfunctional functional machine.  Whoever stays with her has the responsibility of responding to the barrage of text messages from the other 3 of us stuck at work that day.  Needing to know How she is? Has she eaten? Is she resting? Is she in any pain?

We are all scared and watching her like this is heartbreaking.  I know she’s dying but idea of walking into that house one day and not seeing her sitting on the couch is unfathomable.

People are good and kind.  We have been shown so much love via flowers, texts, cards, food and occasional visitors when mom feels up to it. Saturday we had a visit with a couple of our childhood friends, more than friends, more like sisters.  I mean they’ve known mom almost as long as we have.  They stopped by and it was good and it was sad.  We watched embarrassing childhood videos and laughed at ourselves and mom laughed at us too.  And for a moment we were taken back to a simpler time where our biggest problem was what choreography we were going to attempt.  Mine was a lot of arm waving.  I have zero coordination.

I feel like a zombie and I’m sad and scared but I also have a deep appreciation for the friends and family that have been lifting us up and love us and love mom.

So thank you.  Thank you to every single one of you.  This all sucks but your love and support makes it suck a bit less.

Starting Hospice

Here’s the thing. I have been trying to write this blog for like an hour. Trying to find the right words. And there are no right words. Today was another hard day. Today we decided to begin at home hospice services and I hate it. The woman from hospice was very comforting and caring. I just hate what it all means.

Things Aren’t Great

Here’s the thing. Things aren’t great. Everyday is different or just a version of the same. Nights are rough and she hasn’t had a full good day in a long time. She hasn’t left the house since her palliative care appointment.

The reality of all of this is settling in and the fact that the best is behind us. Disney can’t save us this time. However, we did have a nice little Disney shopping spree from the couch a couple nights ago.

Watching her go through this is painful. We are all just really sad and the worst part is that we aren’t even at the worst part. We laugh, we cry, we sit in silence, we watch home videos. All of this just feels like a really big suckfest.

Palliative Care

Palliative care. The first time I had really heard of palliative care was the day after mom was diagnosed. A gynecological oncologist spelled out moms options. She said if my mom opted not to do chemotherapy they wouldn’t do surgery and they would just refer her to palliative care for comfort care. Of course as we all know mom did do chemo and have surgery and have a heck of a 3 and half years + filled with lots wonderful memories as well as struggles.

But anyways here we are back to the start and palliative care. When I think of palliative care I think of comfort and giving mom the best quality of life she can get at this stage in the game. Which as of late hasn’t been much. She looks great, I know! Except for when she doesn’t. Since returning from Disney she’s left the house 3 times. Solely to go to doctors appointments. And it’s not for lack of motivation, she has things to return to Home Goods and a store credit to take advantage of. She just has a lot going against her these days with the cancer and her bowels and now a sinus infection.

So anyways palliative care. So we get in there and I’m feeling like ok this is going to be potentially good. Comfort care. They send a woman in to go over her medication list. And it was not comforting and she was actually pretty rude. They’re relocating her (shocker!) luckily to another location. She was just not who you would want going on this “journey” with you. It was a rough start.

But then her actual palliative care nurse came in and I felt like I could breathe. She made note of all of mom’s issues. She set a goal of being able to get her out of the house and get things more under control. She listened to mom’s concerns. She left the room to go look things up so she could think of the best plan possible. She said mom is very much alive and she wanted help her achieve some quality of life. It was comforting.

It’s hard being at this point. It’s hard seeing such a strong independent person have to fight so hard to feel like the person she was before. I am BEYOND thankful for every second we have had and I know we have been beyond blessed for everything we have been given and we hold onto that. But it’s still just really hard.