i’ve been writing this post for like 3 days

Our 7″ of snow is completely gone after we got like 3″ of rain.  And a 60 degree day.  Oy.  Once again no white Christmas for us.  I don’t think it unreasonable to think that maybe one year we will get one considering I live in a place that does experience winter.  Somehow it always just misses us.

We had Christmas at my sister’s house Saturday evening.  I made baklava (which turned out to be my best baklava ever), truffles (30 in total.  5 rolled in peppermint chips, 5 rolled in matcha, 5 rolled in sprinkles, 5 rolled in cocoa powder, and 5 rolled in chili cocoa powder), “pink stuff” (per dad’s request), chocolate dipped potato chips (don’t you judge me internet actually the internet should love this, nevermind), wild rice with chicken (mostly because Ki needed a lower sodium main dish than ham) and I also brought along some yummy rolls and goodies from the Amish bakery.

So we did our yearly tradition of dinner and presents and visiting.

This year I got my sister a hard bound 5 year journal meant for writing down a memory a day about the boys, a Bath and Body Works 3 wick candle, a Bath & Body Works body spray, a glittery little snowman… and maybe another little thing or two, I honestly can’t remember.  After Ki wrapped them some of the stuff I was like, why are there so many presents, I don’t remember what I bought lol

I got my brother Arkham Origins for PS3 and a box of Bach’s Rescue Remedy Pastilles… which he is too nervous to even try which is dire proof that he needs to try them *heh*  I swear there was another little box for him but once again, no idea what was in it.. my memory is shot as you can see, I hope he enjoyed it.

For Tysen I got him a super cute pair of Santa jammies and a toddler drum playset that lights up, plays musics, and teaches them things like letters and numbers.

Tristin got a super awesome pirate play set and a couple football figures.

For Terry a t-shirt, a box of Moose Munch… and for him and my sister 2 mugs and some honey chai

And for my dad, a set of 10 frames and I had 10 family pics printed from my printing company.  Since he bought that house he has been talking about how he wanted pictures like Max & Donnabelle had when they owned it.  Well I knew that he would never buy frames and print pictures so I went ahead and did some for him.  And a mug and some coffee.

I also made origami lucky star ornaments for everyone.

After we left he actually sent me a text that said “I had fun tonight.  I like it when we all get together for Christmas.  Thanks for the pictures, they mean a lot to me.  Love, dad”  That was like shocking… so not like my dad to say a gesture meant a lot to him.  That was my best gift for the night, to be given that gesture of gratitude for a gift that I put a lot of love into.

Of course we all later had the conversation that dad continues to looks terrible and how we wonder if he will ever go to the doctor and then there is the reserved sigh that no he will not and it is best to just enjoy the time we have left with him however long it may be.  I hate the thought of going through all I am going through now with my husband and at any time I could lose my dad on top of it.  I’d rather just pretend it won’t happen that way, it is just too much to think about.


Sunday I didn’t leave my bed.  Okay once I made it to the couch but then I decided my bed felt safer and went back there, where I stayed watching football and taking naps.  I don’t know if I have ever really done that, just decided to stay in bed all day.  I just felt that overwhelming feeling creeping in and I thought to myself… maybe I shouldn’t try to fight it… so I didn’t it.  Instead I did what I needed to do and if that was to not leave my bed all day then it saved me.

There has been a bit of edginess the past couple of days due to Ki’s chest catheter that drains the reoccurring pleural effusion.  The fluid has been a bit pinkish… Sunday it was really pinkish… Monday it was looking more like it typically does… yellow but still a slight hint of pink. Today it had a tint of pink and was more orangish.  They told us it could change colors and not to freak out if it does but it is still scary.  A nurse from the pulmonary doctor called us back about another issue concerning the drainage kits while we were doing the draining Monday morning and we missed the call since hands have gotta stay sterile with the gloves on and everything so he called back afterwards to and left a message about what they called about and updated on the color of the fluid, just to let them know.

I have tried my damndest to try to become accepting of the chest catheter.  I try to think of it as a wonderful modern medical miracle that allows somebody who is having all these issues to be at home and function like a normal human being.  I try to be positive about it, but it just breaks me sometimes because it is like…how did this become normal?  And yet it is a constant reminder of what isn’t normal.  When that thing is out of him, I never want to smell another fucking alcohol swab ever again.  My hands still shake and every muscle in my body still tightens to uncomfortable levels when dealing with it.  Not that it is easy for him either, I’m never saying that me having to help deal with it is worse than him having to have it inside of his body, not at all.  But it’s just… well things you never thought you would know about in life.

Since the last hospitalization Ki has moved past the denial he said he felt.  I didn’t know he was in such denial but I suspected when initially we could not talk about the fact that he would need a liver transplant without an outburst of “I don’t want to focus on that right now.”  Now he focuses on it.

He told me his depression was very deep upon first leaving the hospital this last time.  I knew it but I didn’t know how bad he really felt until he told me.  He didn’t necessarily hide it at all but there was a thought process I was  unaware of.  He told me that the support group meeting is what pulled him out of it, he realized that other people have been through this and worse and pulled through and survived.  Since then he has been facing this more head on than perhaps even I have if I am being truthful.  He has been joining online support groups as well and talking to people one on one and getting information.  Sometimes I think the information is too much… like okay let us not focus on all the negatives and just take it if it occurs but I guess if having that information empowers him, who am I to tell him that it is wrong.  With me, too much information can be a bad thing because then I overthink and obsess about things that I might not ever have to worry about.  And still things you didn’t think to obsess about happen (ex: chest catheter).

All that I want is for him to get on that list.  After that I feel like I can start to deal with every thing else.  The list gives me hope.  Until he is on it I feel like we are just kind of blowing in the breeze..l lost in all of this.


Last night I finished wrapping all the gifts and getting them under the tree.  Once again it does not “feel” like Christmas.  I realize I say this every year.  I don’t know where the magic is.  I don’t know what is supposed to make it feel like Christmas.  Maybe it was the routine as a child… winter break from school, parents putting out Christmas stuff, snow, the excitement for “Santa” coming, tradition… Some of it gets lost in adulthood, you can have tradition but you also have to still clean the house and work and some of the magic disappears when you’re the one who is walking through hoards of people at the mall to find the perfect gift.

This year of course I am once again drawn to wanting to hold on to every moment, the realization of never knowing if you will get another holiday season with a loved one after all that has happened this year.  Realizing you just never know what could happen and when.  Try as you might, like I said about Thanksgiving, you just can’t capture it how you want to.  You literally want to stop time… freeze the moment, the day, the week, the season.

I find it weird how something so dramatic can be happening in your life but you still have to find a level of normal to operate on.  Humans are such weird creatures.  The need to find order in chaos.  The fact that everything goes on, even when it sometimes feels like there is no way it possibly could.  When I think about families in the war torn streets of Syria or those in our own country that go to sleep at night on the streets…things like that…. the resiliency of the human will just amazes me.

I find myself being somewhat repulsed by my history of taking things for granted.  It had gotten especially bad before all this happened.  I kind of look back on the person I was turning into with disgust.  I was just becoming more selfish, more material oriented. This all snapped me out of that in dramatic fashion.  I know it is of no use to regret the past, it doesn’t matter I cannot change it now.  But I just wish I could have been more grateful.  Be grateful now.  Always.  That is the lesson kids.


Speaking of wish, I wish I would have gotten the gifts under the tree earlier.  It’s not about the gifts, just the way it looks and the memories it invokes.  A tree with pretty packages placed underneath, reminds me of being a child and the magic of waking up on Christmas morning to see that “Santa” had came.  My sister would always wake up first and wake me up and we would go out and be taken over by the magic of the tree, newly christened with gifts.  Such good memories.  I hate with how with age they become less vivid.  I wish I had grown up in the age of cell phones… you would have pictures and videos of everything that ever happened lol

I long for a child of my own to give that magic too.  I don’t talk about it anymore.  I don’t see the point.  He still talks about it.  Hell the other night be brought up the possibility of a sperm donor if the situation were to arise that having biological children would not be a wise idea due to the genetic possibility of Alpha 1.  I still have to be tested… but our children would definitely be carriers, I still have to educate myself completely on what that would mean for them. He has not forgotten how much children mean to me.  But me.  I want to forget.  And so I try.


But today is not the day for lamenting.  Nor is any day really.  Each day is a precious gift and living by each moment is the only way to truly enjoy this life.  So I should go finish with my Christmas Eve task and thank God for another beautiful day on this planet.  Merry Christmas everyone.


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