So Excited!!

I sold another one of my Lazy Susan's yesterday!!!!!  So very exciting.  I sold it to the Chaplin I met while Hubby was in the ICU.  So 2.5 months later I deliver the goods LOL.  She's understanding of what was going on.  I put the money back into the business, I gave money to my Dad to make me more rounds both 12 inch and 15 inch rounds.  Then Ladybug and I will be making up a bunch to put on Etsy and also to sell at an upcoming Craft Fair held locally in November!!!  I'm too excited for this all to come together.  I designed and ordered business cards, a stamp (for the back of the Lazy Susan's) and postcards (for Thank You notes if I ship stuff out).  

There is so much potential.  I also heard from a FB friend of Hubby's about a PT work from home opportunity and I applied for that today as well.  I would work up to 4 hours per day at the new place and maybe even be able to do some of it while I'm at the FT job.  All I need is a phone or computer.  

Yesterday I rushed home after work and finalized all the stuff on the Lazy Susan, then rushed to Hubby's rehab facility where I was going to meet the Chaplin.  I was so excited.  Anyway, I forgot that Hubby had Speech Therapy at 2pm so I was in the dining room waiting for my Chaplin friend and they were holding a Brain Injury Support Group in there.  I was listening in, I honestly wanted to attend but not without Hubby.  There was a woman there who I think her nephew is in the room next to Hubby.  Anyway, he wakes up every single night every two hours and they have to wake up with him and tell him that this is your room and this is your bed.  He doesn't remember every single time he wakes up.  He has like no short term memory.  He keeps asking her why she's there with him and shouldn't she be at work, when she's been retired for 8 years or more.  It's so sad.  I'm blessed that Hubby didn't turn out this way.  I think he has some short term memory issues but it's getting better and better I think.  

Yesterday while I was at work Hubby shared with me two videos.  One was of him walking down the hall unassisted (no walker) and the other was of him standing up tall and putting each foot onto a step without holding on to anything (not easy for him, his balance has been off).  I cried when I saw those videos.  I know he's working so very hard.  

I need to get into the garage very soon (Sheesh I need to write a list) and find how what kind of cable we have in there to sell those boxes of cable and get some money coming in from that.  That will at least help. Hubby also mentioned some instruments that he has somewhere in the house or the garage that we can sell too.  I need to do that THIS weekend.  I don't want to forget.  At least then I have accomplished something.  Although with the craft fair and selling the Lazy Susan I think I have accomplished a lot. 

I feel to light today and like life is full of potential and opportunity.  I hope this feeling lasts a while.

Yelling at God

I think I've mentioned that I have trouble sleeping.  That sounds so mild when you say it "trouble sleeping."  My trouble is anything BUT mild.  In fact it gets violent and loud at times.  You see, I have what they call Hypnagotic Hallucinations.  This is when I am going to sleep, within the first 20 to 30 minutes of me falling asleep, I wake up, see my room but also see things that aren't really there.  I've seen it all, spiders, boxes falling down on Ladybug, Luggage hanging over my bed, a ceiling fan on high hanging on by one cable, people, monsters, etc.  With all that has been going on with Hubby, I've had vivid hallucinations that he's in bed with me but stopped breathing and the vent wasn't working to keep him alive, I've seen him "fall" out of bed and got up out of bed, ran around the bed to see nothing on the floor and realize that he's not here.  That being said I've been searching for a long time now, for some type of relief.  I'm more of the all natural kind of girl so have been trying Melatonin, essential oils applied on me, essential oils diffused in the room, ingesting the essential oils, warm milk, cold cereal, alcohol and finally have tried meds... again.  Anyway I'm on this med right now that seems to help curb them.  

However, one day a week or more ago, I was sleeping in my room and I had been waking up every single night for several weeks at least around 10:30 PM every... single.... night.  This night, for whatever reason, I had had it.  I was DONE with waking up all night long (I would wake at 10:30 PM and go back to sleep only to wake up around 1 AM etc. and on going until it's time to wake up for real).  This night I woke up and for whatever reason I started yelling and cursing.... at God.  Apparently GOD keeps waking me up in the middle of the night for whatever reason and I was asking him WHY, why do you keep waking me up like this, why at 10:30 PM EVERY night!  Why couldn't he just let me sleep through the whole night every so often?  I would be happy with just one night per week where I would sleep all the way through.  Just ONE NIGHT!!!  

It took me a few minutes of ranting and raving at God before I came fully awake and realized what I was doing/saying and I felt pretty embarrassed.  I believe I got up, got something to drink, apologized to God and went back to sleep.  I really hope that God understands.  On another note as I'm thinking back now, I no longer wake up around 10:30 PM, now it's 9:30 PM.... well played God, well played.  

New Rehab and the Frog

So yesterday while we were doing the Home Assessment w/ Hubby and the PT department from the place he's currently residing, I received a phone call from someone else at the place he's residing, stating that she heard back from her doctor and he appealed the decision with the insurance doctor and was able to reverse the decision so Hubby should be able to go to the new inpatient rehab facility!!!!  However, the rehab facility hasn't heard from the insurance company so as of this moment (6:45 AM), we still don't know WHEN he will be going.  I'm supposed to pick him up from this current place today after work (I get off at 1 PM, need to pick up Ladybug and then will finish packing him up and sign him out).  So hopefully we will know before then.  However, if not then we will just take him home with us until we do, which Hubby will like too. 

So we are looking at a maximum of two more weeks where he will get intensive, three hours per day, rehab, to relearn daily living.  He won't be able to leave the facility during this time so no more daytime home visits on the weekend.  It's only two weeks so he's ok with this.  We also don't know if he will get a private room OR daily showers (which he's now used to).  Hopefully I can get the doctors there to complete his disability paperwork soon as well so we can get that started.  I can't imagine that he wouldn't qualify at this point, even with how far he has come.  

The Hot Jazz Jubilee is this weekend.  Normally we volunteers as co-managers for a ballroom for the event, but we had to pull out because of all this.  Luckily they were able to get a friend of ours to cover for us this year.  This is the first year we've missed it.  Hubby loves Jazz music and always wants to attend this and one other festival in the area.  That other festival was cancelled this year due to lack of funds so he missed out on that too.  The good news is that they are trying to collect donations to help us with our bills.  So hopefully something will come of that as well.  

I had to turn in my time sheet at work this morning (was supposed to yesterday but since I've been working at 4:30 AM every day I was able to hold off), and I just approved it with time off tomorrow because we just don't know for sure that I won't have Hubby and that he won't be home tomorrow.  I figure it's a sign that I'm supposed to rest a bit and relax for the weekend.  I have Monday off too and plan to go Sunday to my parents.  I'm hoping that my Dad is able to get some wood to make more wooden rounds for Ladybug and I to make into Lazy Susan's.  If I can get enough stock then I might be able to attend some craft fairs to sell them.  I would love to be able to do that as then it might help the overall business take off.  I have little tables and nightstands at the house too to fix up if I wanted to and someone was interested in buying them.  It's exciting.

However, I think some of this weekend will be going through the garage to find some music instruments that we can sell and then also determining how much cable we have that Hubby was stocking to sell that as well.  Since we don't know when/if Hubby will be able to return to work, hopefully we can get some cash from that.  I would like to also organize it a bit but that might be tricky.  There are a lot of things in there and I've got my Dad's back (who likely got it from my Memaw) and I can't overdo it or I will be in pain for a while.  So I will have to be careful.

OHHH there was a pretty funny thing that happened yesterday w/ Ladybug.  So, since I've been coming to work so early so I can do things after my shift, Ladybug gets herself up and ready for the school bus every morning.  Anyway she calls me yesterday kinda freaking out.  

"You will never guess what happened to me" she says.

Me - "What?"  (She's typically overly dramatic and I figured this was a play to get out of school).

"Well I was going into the bathroom to use the toilet and I noticed it hadn't been flushed so I go to flush it and I see a FROG in there!!!  So I quickly put my hand in there and rescued him!"  She exclaims.  

The things that happen in our life are amazing sometimes.  

The End of the Beginning

This is likely the beginning of a new life for us, Hubby, Ladybug and myself, at least.  It's been a road we've traveled for nearly three months now and it seems both short and long.  As I sit here half asleep thinking about everything that has happened and everything that will happen, it's overwhelming to be sure.  

I'm thinking about all the people we've met along the way.  Both of the Medical profession and just the regular people who were patients or family of patients.  We've met some really great people along the way.  For instance there was the nurse in the ICU that we had the last couple of days there that was just THE BEST nurse I could have asked for.  She helped me clean up Hubby when he was still mostly sleeping/in a coma.  She helped me make him look more himself.  Made things more normal and taught us how to care for him the way he needed it.  She gave hugs when they were needed as well.  There was the nurses at the next place we were at, the acute care hospital who cared for him and made us feel like he was the best patient ever and that miracles were happening.  There was the Janitor at the Post Acute place that was so horrible (the place not the janitor) who was so honest with everything.  There was a man who lived there that was always outside doing a word puzzle book or asleep with a word puzzle book, who Ladybug took a puzzle book to after Hubby was discharged.  There is the AWESOME CNA that helped Hubby ONE DAY at the place he's at now that I wish would be his CNA every time she works but isn't.  We just clicked her and I.  There is the head nurse there too that's made me feel like any issue I have is going to be dealt with quickly.  And then there are the patients at this current place, the older people who have lived there, been there a long time and might never leave there again.  The older people who seem possibly forgotten by everyone but themselves.  There is a guy who made it a point to tell me that he appreciated how much I was helping Hubby.  Like it was something that I wouldn't do.  There is the woman who calls everyone Ma'am and always asks about the baby (grandson) and where he's at.  Then there is the woman who only speaks Ukrainian but who makes it a point to come over to me every day that I am there and talk to me.  

The other day she noticed I was tired, I was angry and I was just spent from everything.  The lack of information on Hubby's potential move or if he's coming home.  The tiresome stuff at work.  The lack of help from Ladybug at home with compounded into an argument on the way to see Hubby and left me feeling like I was a failure.  It was likely written all over my face.  That feeling of failure, that exhaustion.  She came over and pulled out a chair for me to sit down in.  She held my hand and kissed it.  Lord knows what she said and she goes both ways where she can be sweet or just plain mean but she's always been nice to me. I think she likes creating chaos and who could blame her with where she's living and who she's surrounded by (only a few who speak her language) it must be lonely for her.  But in our way we have bonded regardless that we don't speak the same language.  

I wonder what will happen to these people when we leave.  Some of them seem so happy to see us when we come to visit.  I'm not going to have the time to go back and see them.  I'll be busy with Hubby, Ladybug, work, PT, OT, SP and everything else that will come up.  I will miss them in my own way and will wonder about how they are doing.  

I just found out that our insurance declined Hubby for the rehab place.  Sigh.... OK so at least I KNOW that he's coming home tomorrow.  I can plan for that now.  I have the home assessment this afternoon and will go to work again at 4:30 AM tomorrow and leave at 1 PM to go pick him up from that facility for the last time, with the exception of when we go back and get his brand new wheelchair.    I think we are all three a little scared about this but I know that if we work together we can make anything happen.  I will be off work for two weeks following his discharge.  During this time we will be going to the Doctor, Dentist, Eye Doctor and establishing PT, OT and ST at the house.  We will be finding our schedule, our groove.  

Good Lord.... please pray for us.

The Possibilities Are Endless....

These last nearly 11 weeks have been trying, to say the least, but I've been doing my absolute best to keep thinking positive, to keep searching for the good in life, to keep pushing onward.  Because breaking down, wallowing in despair, freaking out, it doesn't help anything.  Are you allowed to cry when something bad happens, yes.  Are you allowed to keep crying for hours, days, weeks, months, etc., no.  You need to move forward, to move on.  Even if you don't have kids (which obviously I do) you need to move forward.  

That being said, Ladybug has always seemed to be a bit more negative than positive.  She doesn't know how to react mildly to anything.  It's hard to constantly be the one who is sharing news with her knowing that it's going to be a huge freak out when you do.  If I could avoid telling her, I do, but I can't always avoid it and nor should I.  She needs to become used to processing bad news now while she's young so she can better cope and deal with things when she's older.  

So in addition to trying my very best to deal and process all that's going on in my life, when I do have to tell Ladybug something, it's very difficult for me to let her go on for long because I just want support, even if it's from my 11 year old.  I think she should and could be supportive.  I have realized that she's just not mature enough for it yet.  But then again there are things I can't keep from her because it's going to happen or is happening and she needs to know.  It's a never ending cycle.

So I've been thinking that we have this brand new car we purchased in March and we really can't afford the payments at this time, especially not knowing if he will ever drive again.  So I tried to take it back to the dealer I bought it from yesterday.  I cleaned the whole thing out too in anticipation that I would be Ubering home.  I found out that even if they offer me most of my loan amount that I would have to pay the remaining balance immediately.  I don't have that kind of money.  I'm apparently waiting for the Sales Managers contact at Wells Fargo to call me.  Hopefully something can be worked out.  I love the car, but I can't afford it.  It's like even trying to do the right thing and give it back just bites me in the butt.  

THEN yesterday I received a phone call from the new rehab place we want Hubby to go into and they STILL don't know if they are going to take him or not.  This was AFTER I signed the discharge paperwork for Hubby at the current place.  He can't stay there after Thursday.  So I am beyond frustrated with this whole situation as it's keeping my life in Limbo.  I can't plan anything because of this.  It's frustrating.

But there are so many good things happening as well. We just have to look for them.  I was able to get some art done this last weekend.  I'm going to do some more epoxy on them so I can get more available to sell.  I want to get a table done before the weather turns as well.  I have to clean it and sand it.  Maybe this weekend I will have time and then Hubby, Ladybug and I can fix it up.  That would be fun.  I have a vision for what I want and I will continue to reach for it.  I'm also hoping this weekend I can go down and pick up some more rounds from my Dad to begin doing smaller rounds for people as well (again we make them into Lazy Susan's, centerpieces, wall art, clocks, etc.).  The possibilities are endless.

Alexa

For years that Alexa (Amazon) Dot etc. has been out I have been unable to figure out how it could improve my life so therefore, never purchased.  My parents have one and although it's kinda fun to ask questions etc. I could look up most of that stuff over my cell phone.  That being said, I ordered two w/ some smart light bulbs to assist when Hubby comes home.  I'm hoping once he's home alone that if he should need me then he could ask Alexa to call me and it will.  

Saturday Ladybug was with Blue at her house and I brought Hubby home to spend the day with me.  We installed the transfer pole near the bed in the bedroom and the assist to stand thing on the couch.  Then I decided to give the Alexa Dots a try.  I set up the one in the living room fairly quick and we played around with it and he's able to make it work (thank God as his voice isn't exactly always clear).  I installed one of the light bulbs into the lamp we have there in the living room too.  We played around with that for a while and it works.  I installed the other Alexa and light bulb in the bedroom.  That evening I showed Ladybug that we had it etc. and she proceeded to play with it here and there throughout the evening.  Sending messages to me from the living room Dot to my Dot in the bedroom.  

Yesterday, I picked up Hubby and we drove to Walmart to pick up our grocery order.  We were waiting in the parking lot and I decided it might be fun to mess w/ Ladybug who was home and supposed to be in the living room making sure the cats didn't open or tear the screen door in the living room.  So I used the Alexa app on my phone and turned the light on.  I waited for a phone call or message but got nothing.  I decided to try playing music.  Still nothing.  I went back to the light part and saw that it was off and turned it on (laughing) and watched as she turned it off.  I did this a few more times until the person came out with my Walmart Pick-up order and I assisted them putting it into the car.  When I got back into the drivers seat Hubby tells me my phone rang.  I didn't have my headset so when Ladybug called me I answered it on speaker phone, trying not to laugh.  I asked her what's up.  She starts yelling telling me to stop messing with her.  I ask her what she meant.  She said that Alexa kept turning the light on and the radio on and it was driving her crazy.  LMAO.  I was laughing so hard she was so annoyed and it was so much fun to torture that child as she tortures me most days as well.  

When we got home she was still mad and I was still laughing.  All in all I am pretty glad that we got that Alexa.  It could be some fun.

The Black Cat

We've had this black cat for about 14 years, since The Boy first came to live with us.  It was actually HIS cat but she adopted Hubby as her own and so therefore she's still with us even though The Boy is in Austin, TX.  This cat started out in our two bedroom, one bathroom apartment back in 2003 (ish), has moved with us to three different houses.  She's a short haired, black, declawed cat.  She also ONLY likes Hubby, or did, before all this happened.  After he was in the hospital it took her two weeks to start coming up to me in the bedroom at night for loving.  She lives in our bedroom.  The other cats chase her and are mean to her so I keep them out.  

Right after she started coming up to me for loving I noticed a bump on her, like a mole.  I put it off because, let's be honest, Hubby was more important at the time and I had enough on my plate.  Hell the stupid DOG had issues during this that I had to call the vet on but that was severe diarrhea and pooping blood so ... it was a tad more urgent.  Last week I spoke to Hubby about this again (we touched upon it briefly before) and he stated that she should go to the vet.  So on Monday Ladybug and I took her in.  They looked at it and took a sample etc. and we left.  I got a phone call a couple days later that went to voice mail and forgot to call back until today and I was told that it is cancerous.  

So, savings won't be around forever, disability hasn't kicked in, I have upcoming time where I won't be getting my full pay because I also have to pay my company for my benefits, and now this.  I struggle... she's 14 she's kinda lived a full cat life.  Some cats don't even make it to this age.  I don't have a quote on how much it would be to remove it yet but I can't imagine it would be cheap.  Can't I just use that over the counter wart stuff??  It's not attached to the muscle, just the skin.  

I can't make decisions until I have the quote so I will do my best not to think about it.  I wish I had gotten insurance on her a month ago so this would have been covered but I digress.  

Anytime things want to let up for a while, I'm ready.

Finally a Solution

So yesterday afternoon I FINALLY got a solution.  I had gone through all the horrible emotions of fear, frustration, anger, denial... you know all the layers of impossibility that I couldn't make things right.  That being said.... I found out that in my state I can take Paid FMLA and I would bring home approximately the same amount as it's not taxed.  I felt so relieved that I finally had a resolution that we both would be happy with.

BUT, this morning I found out that I would have to pay more than $500 to my company for my benefits if I were to miss an entire check.  Holy Crap that means I'm paying nearly $1,000 a month for benefits (health, dental, vision, life insurance, pre-tax medical, etc.)  Sweet Jesus and it's not like I can do anything about it NOW and looking back at this year nor would I.  Like I would stop life insurance?!?!  Nope.  If something were to happen I would need that pittance that I would get.  

So although I feel happy that I would get some time off to be able take care of things with Hubby (doctors appointments, eye exam, dental exam, Handicapped placard for the car, etc.) I feel like I might have to work at least two days in that two week period of time to pay for these benefits.  Sigh.... Why can't anything just be simple!??

So in addition to this, last night I tell my very dramatic Ladybug about how I will be able to stay home w/ her Daddy and she FLIPPED OUT.  She was so mad that she too wouldn't be able to stay home.  She threw out how it wasn't fair and I threw back that LIFE wasn't fair.  45 minutes later we both calmed down and was talking about our concerns with him coming home.  You see we both want him to come home, but we are both scared too.  What if he falls?  How will he continue to get better w/ PT?  Where will he practice walking?  How is everything going to work out?  There are too many questions that we don't have the answers to yet.

THEN she was telling me that she didn't want me to tell Hubby (or anyone else for that matter) about when she messes up.   OK ... let's be clear... she's not talking about accidents or mistakes here.  Not like the other day when she was walking w/ a bowl of cold cereal and tripped and spilled it on the carpet (which I did NOT get mad about as it was an accident).  We are talking about NOT doing things she's told me she was going to do, like her daily chores, like folding towels for me or doing dishes, or cleaning up after herself.  She makes these promises and doesn't follow through and it's so incredibly unnerving!!! So I told her that if she didn't want me to express my frustration with her not following through with her word then she shouldn't be doing that then.  It's a never ending battle.  It's a fight that can't be won.  I understand that she doesn't want people to think poorly of her but dang it she's only 11 and these are typical 11 year old things.  I see so much potential in her and I know she can do better if she chooses.  

I know we will struggle but I know we love one another and with that we can do anything.  

Still looking for Balance

I'm not even sure what to say today.  I just know that I feel the need to write down my thoughts, my frustrations.  I really wish I didn't spend so much of my time feeling irritated.  

Today we are supposed to find out if Hubby will be accepted into the intensive rehab program.  If he's accepted then he will likely be moved over tomorrow or no later than Monday.  He will likely only be there for a maximum of two weeks.  But it's better than nothing and I think it's a great program for him.  Hubby wants to go there too.  He knows he's nearly home.  Not that coming home will make everything better, because it won't.  Home will still be hard because he will need a Home Health Aide for the first couple of weeks and will also have to do PT, OT, and ST there too.  This means more work for me to be sure that he has the right people helping him.  I will also have to figure out meal planning for all three meals of the day whereas now and before this we all just kinda did our own thing except dinner.

So that's one thing on my mind, constantly.  Another thing is we purchased a brand new 2018 Honda CR-V in April for Hubby to use for work and now with only one income I'm in a pickle needing to know, do we NEED this car?  I have another car.  A 2011 Honda Accord which has always been reliable.  I need to get the spark plugs replaced and a friends husband said he would help me with that.  Once that's done I'm not sure I DO need the new car.  But dang it's hard to say that and give it up but for $450 a month... that's money I can't afford to spend right now.  So now I'm trying to figure out what is the best plan of action to take.  Do I get it appraised at the dealership and see if they can pay off the loan?  Do I try to find someone who wants to buy it and pay off my loan?  Do I allow someone to pay ME for my payments?  Sheesh.  Last night I was telling Ladybug that I was likely going to have to sell the new car and she freaked OUT.  Saying that this is how she knows that God doesn't exist because he allows stuff like THIS to happen.  She says this because this is the ONLY brand new car we've ever been able to get.  And yeah, it doesn't seem fair but life isn't fair.  Life is full of hard decisions but I need to do my best to make the right decision regardless.  And talking to Hubby about this just makes us both sad because honestly, we don't know IF he will ever be able to drive again.

This weekend Ladybug is going to stay the night at Blue's house.  Blue's house is near a river about an hour away from me.  I'm both happy and nervous for this.  She's never spent the night there before and I'm hoping everything goes well.  This will allow me to have some alone time with Hubby too.  We haven't spoken about which day is best this weekend for his home visit yet.  I think it really depends on if he goes to that other place or not.  If not then hell I will check him out on both days LOL.  But then again I also have to install the three transfer poles and the 4 inside cameras and the two Alexa Dots that I have in preparation of his homecoming.  Hopefully that won't take too long and be too exhausting.  I can't wait to have an entire weekend of doing NOTHING, going NOWHERE.  Lord knows when I will actually get that though.  

I really don't want this Blog to be a whiny reminder of my horrible thoughts.  Honestly with Facebook and all the things people post on there that's constantly negative I would hate that.  I think this is another thing I need to find balance in though.  I'm hoping that eventually things will balance out again.  I'm really not UNHAPPY with my life.  I'm content for the most part.  I mean there isn't much I can change to make it different or better.  So I need to be content.  

So that being said I need to make more time for my passion, my hobby, my obsession, it's Unicorn Spit!  We can all blame my Dad for this obsession of mine (and Ladybugs) with Unicorn Spit.  It's a wood paint/stain/gel that's non-toxic and just plain AWESOME.  I did a small round metal table (painted over w/ chalk paint so the USpit will adhere to it) as my first real "project" and it turned out AWESOME.  Ladybug and I are hoping to make this into a side business.  My Dad is cutting out rounds for me to use so I can make Lazy Susan's and my friend has already purchased three of them from me!  I want to get some more finished so I can put them on FB Marketplace or Etsy.  I'm looking forward to finishing up some more and then selling them.  I think it would be a great therapeutic thing for Ladybug and I to do together as a team.

Balance is a Precarious Thing

I'm sure I'm not the only Mom who feels that she's constantly off balance.  It's hard to find balance in life in general but with kids... even harder.  Lately, especially I feel like I'm struggling to find balance in my life.  You see, since this stuff with Hubby happened I'm either working or with him.  When I do find time to be home it's mostly chores and cleaning up.  I don't have/make time for myself, or friends, or my kids.  It's hard to find that balance. 

During this trying time since the accident I've had more people than I thought possible reach out to support me.  People have donated money, helped with the lawn, bought some of my art stuff, called, messaged and emailed me when I needed it.  People ask for updates on everything and everyone and I feel so honored that people still keep us in their thoughts and prayers.  I don't think we could have gotten this far without it.  But I feel like I have also neglected some people.  My days are so much the same and sometimes so exhausting that after I help him with a shower and teeth brushing at night, all I want to do is shower myself and get into bed.  I don't want to talk, message, type, email or update anyone.  However, I can't do that.  People need to be updated and I need to talk, message and do everything I can to be sure that they realize that I appreciate every time they are checking in on me and him. 

I guess Hubby might be coming home as soon as next Thursday (a week and a day from today).  This is both exciting and scary news.  Exciting because, Yeah, who wouldn't want to come home instead of being in a Skilled Nursing Facility or hospital?  This will eliminate trips to see him after work and we will have more time at home to HOPEFULLY do other things.  Fun things.  It's scary because he's still not steady on his feet and I'm afraid he will fall and/or get hurt somehow.  I'm preparing as much as possible with cameras, Alexa Dot, and an alert necklace for when I AM home but not in the room he's in.  So for now I will keep thinking positive.  I'm really hoping he goes to that last rehab place to even everything out and be as prepared as he can be to come home.  If he does come home Thursday they will come and do a home assessment first.

So when this all happens a NEW normal will come about.  Where I get up in the morning an HOUR before I need to go to work to help him get up and eat and prepare for the day.  To figure out what he will have for lunch, to potentially come home for lunch myself to be sure he's eating and ok.  To figure out dinner so that we all have a well rounded diet, something I've never been good at.  So finding the balance in doing all these things AND finding time for myself, will be tricky.  Throw in spending time w/ Ladybug and things are even more tricky.  I'm sure we will have our ups and downs as we settle in to our new normal, that's expected, but I hope that overall things are easier. 

Balance is a tricky, precarious thing for me.  I've never been good on the balance beam myself.  Always clutching it with my toes so I don't fall off and end up falling off anyway.  But life is full of things that mess up your balance.  That's what life is about.  Picking yourself up after you fall off.  Dusting yourself off and moving forward in a positive way.  And that's what I will strive for each and every day.  I know, and always tell my kids to think the same thing, that I'm doing the absolute best I can, and at the end of the day, that's got to be good enough. 

The Struggle is Real

It's literally been years since I posted on this Blog.  Ladybug has grown up into a beautiful 11 year old little girl and all the other kids have moved out of the house.  We have moved to a new house, earlier this year and that was a trial.  Since there are other things going on right now I feel the need to possibly begin Blogging again.  But this time it might not be as humorous or funny.  It might be frustrated and angry.  I'm not quite sure yet but consider those who are reading this forewarned.  Those who know me in real life might be surprised or disappointed by my thoughts and actions and that's just something I will have to be ok with too. So it's time to begin. There is much to say and I would be amazed if whoever is reading this actually reads the whole thing.  But here we go.... 

As I stated, earlier this year we moved from the house we had been in for 10 years to a house nearby which is also on land (so nice).  Ladybug, Hubby and I moved into this 2 bedroom, 2.5 bathroom house at the beginning of the year and have more than enough room for us, however, the garage is PACKED to the brim with Hubby's work stuff.  I'm not sure I talked about Hubby too much before but I have a feeling he will play a big part in my musings now.  Anyway, so we moved in and got situated and finally got everything cleared from the old house and I was ready to move forward and not look back.  It hurt to have to move from the home we knew for so long but the owner wanted to sell it and we couldn't afford to buy it AND fix it up, which is so desperately needed.  So we moved.  Ladybug misses her horse friend nearby and misses being so close to the school she went to too.  She used to be able to walk to and from.  Now we live on a street w/ no sidewalks and she has to take the bus.

Ladybug is in the 6th grade now (OMG in the 6th grade) and is fully into the pre-teen, hormone driven attitude we all know and love so much.  It's so hard to find balance with her lately.  I want to show her love but darn it I want her to do her freaking chores and keep her room cleaned too.  Sigh.... on top of that she's dyslexic which causes all sorts of problems that we have had to work out over the years.  She likes to read but it's hard for her.  She knows she smart but feels dumb.  It takes her a lot longer to do things than the other kids in her class.  And it's hard to watch the struggle and find that balance of not babying her but being her advocate as well.  School started a couple of weeks ago and now she's "dressing out" for gym!!!  It was a huge scare for her and I remember those days of embarrassment too but I was in High School.  I'm not sure what's better to be honest, 6th grade or High School but either way bullies suck big time and she's afraid of being teased because she's bigger than most girls her age/grade.  She's darned near as tall as me (I'm 5'5") and is wearing Women's sizes as well.  I'm afraid for her and hoping that the kids at her school won't suck this year and make fun of her for things she can't control.

Now, onto my other tough topic, Hubby.  Sigh.... Hubby, for his entire lifetime (maybe it did start in the womb, I can't be sure) has always been a workaholic.  And I mean ALWAYS.  The older kids remember his constant working and how he was rarely ever around.  Ladybug only remembers when she was real young how they used to play Night Night House, Tents, Watermelon Picnic and w/ Baby Gracie, but really even then he worked all the time and only rarely did those things, which is likely why she remembers, because they were rare and special.  Anyway, so he worked through the move, rarely helping at the time with packing or anything.  He stated that he wasn't feeling well and that he would get dizzy and it took everything in him to go to work to earn money for the household etc.  So, I moved us mostly myself. I packed up that house mostly on my own and moved things over one car load at a time for WEEKS before the "big move".  With the help of some paid movers, the kids and the kids' friends, we moved right before New Years.  And Hubby continued to work more than he was ever home.  He loved his work, always has.  It gave him pleasure to know he was doing a good job and people often told him so.  He was self employed as a technician and did router, server upgrades for a lot of places like McDonald's and Chili's etc.  

Anyway, Hubby had been feeling really ran down and was getting dizzy whenever he would look up (which he needed to do often in his line of work to look at cable or even run cable.)  So he went to the doctor (after I yelled at him) and they did a bunch of tests.  He started passing out when he would get up in the mornings, which scared the crap out of me and we figured out this was due to low blood pressure.  Earlier I had been diagnosed with High Blood Pressure and had a BP machine at home.  So we tried to be sure he had ways to fix that (Gaterades etc.).  He ended up at an Ear Nose and Throat doctor and they found that his lymph nodes were enlarged, as well as his tonsils.  They decided that he might have Lymphoma and that the tonsils needed to come out.  The day before his surgery scheduled in April he went to the ER as he wasn't feeling right.  The ER doctor told him that he needed to eat and drink more as he was dehydrated.  The next day he was turned down for the surgery because the anesthesiologist didn't want to risk his BP dropping during surgery and referred him to a cardiologist.  I bet those that don't know me think they know where this is going.... you don't.  The cardiologist said that he needed to eat and drink more often and stay fed and hydrated and basically just take care of himself better.  That there was nothing really truly wrong with his heart etc.  So the surgery was rescheduled for June.  

Hubby's birthday was June 2nd and I had a BBQ for him that day and the kids came over, as well as a family friend.  It was a nice day.  The grandbaby was there and the kids made sure to get some pictures of him w/ the baby.  It was chaotic for me as I was preparing all the food, sides etc. but it was nice to have the kids there and eventually I told them they had to leave as it was getting late and I had work early the next day.  

On June 5th, it was his surgery.  I took him in and it went fine and we came home.  After 24 hours he was still ok and able to move around on his own so I went back to work.  He messaged me that he was in a lot of pain and the pain pills weren't helping so I called the Dr. who did the surgery and told them and they said that this was expected etc.  The next day we were still trying to get food and liquids down him and he was having a really hard time with it and I called them again.  I was worried that he would start passing out because he wasn't able to eat and drink like he should.  On the Friday after the surgery they told me that they would refill his pain med and that he could take Ibuprofin 4 hours after taking the pain med up to twice per day. This seemed to help Hubby and he actually went to work on Sunday (two days earlier than he should have but what did we expect).  He worked Sunday, Monday, Tuesday and Wednesday.  Then had Thursday and Friday off.  He told me Wednesday he wasn't feeling well.  Was tired etc.  Ladybug really wanted to spend some time with him and he kept putting her off (as was normal for him) and she was getting upset so I got into an argument with him on Thursday about it.  

Now I don't sleep well and likely never really have.  I had gotten a weighted blanket and on Thursday night was trying it out for the first time.  It had been a long time since I slept well, months if not longer.  I was finally sleeping pretty good.  I had Friday off as I was going to go to my parents to get some stuff for me to do art projects with.  At 4AM Hubby wakes me and says that he's coughing up blood.  I asked if it was more than a tablespoon and he said no.  I told him not to worry until it was more than a tablespoon as that's what the ENT who did his surgery told me.  I went back to sleep.  A little before 6AM he came back into the room and turned on the light and told me "This is more than a tablespoon." and showed me a bloody napkin.  Those were the last words he said to me that day.  He went into the bathroom and proceeded to cough up a LOT of blood into the toilet.  I was getting my contact lens in and was getting dressed.  I was on the phone trying to get an on call doctor.  I told him he should get dressed to go to ER.  While he was putting his shoes on I cleaned up the bathroom as best I could because I KNEW Ladybug would be in there later and I didn't want to scare her.  We locked up the house (Ladybug still inside sleeping) and got into the car.  I messaged her that I was taking him to the doctor.  

On the way to the ER I asked him questions, mostly about the meds.  When was the last time you had pain meds?  When was the last time you had the ibuprofin?  Did you take more than you should or more often?  When did you have your prescriptions?  I knew at the ER they would ask these questions.  He messaged me the answers on the way.  He had me pull right up the front ER doors and I got out the car and walked in with him.  He was still coughing up blood in a towel.  I told them what was wrong and they took his vitals then took him back pretty quick.  I had to move the car and when I got back to Bay 22 he was on his knees coughing up blood faster than they could suction it. The nurse was trying to remain calm but I could tell that things weren't going ok but I didn't know how bad it was.  I stood up in preparation to get out of the way for the other staff I knew had to be coming and they took me to the internal waiting room in the ER.  I was there for a few minutes, messaging my mom who I had been trying to keep updated, when they sent in a Chaplin.  I still didn't realize how bad things were.  I told her what was going on and she listened.  She held my hand.  The nurse came in asking about meds, which I answered, she left.  Another nurse came in and said that he had "coded" but they brought him back and they were going to take him up to surgery to seal the bleed on his left tonsil area.  Then a doctor, the surgeon, came in and spoke w/ me.  About this time I had tried reaching Hubby's mom and she was calling back.  I told her that we were at the ER and he was going into surgery but I had to go talk to the doctor and would call her back.  The doctor explained that Hubby had died but they brought him back after finding a 12 inch blood clot in his breathing tube.  They were going to take him up to seal the bleed in surgery.  I could see him but he was sedated.  I did see him on my way up to the surgical waiting room and he was already intubated (breathing tube in his mouth down his throat).  He was cold to the touch.  I talked to him a bit and kissed him... really still not knowing how bad it was.  I walked up to the surgical waiting room while trying to find someone to take Ladybug for the day and finally a friend picked up the phone.  I quickly filled her in as I was getting into the elevator and she said she would get her in an hour.  I got to the waiting room and told Ladybug that her Daddy was going into surgery and Ms. M would pick her up in an hour.  To please be ready and make sure all the windows were closed.  

I called the other kids, left messages and texts, all while the Chaplin watched.  She mentioned that she was nearly off shift and that I needed someone with me.  I asked my mom to come.  I didn't feel like I really needed anyone.  I was handling things pretty good, even the Chaplin was amazed.  She gave me an Angel worry stone that she had been carrying around for a long time in her pocket.  That stone would help me more than I could ever imagine.  She left and Mom was on her way.  I watched the board that had all the surgeons on it and handled texts to friends, trying to keep my mind busy.  Finally saw his surgeon disappear off the board and called the desk.  Someone came and got me saying they were taking him to ICU and she took me down to THAT waiting room.  Mom came in shortly after that and the kids called in.  I filled them in as best I could.  Ladybug was picked up and having fun at the friends house.  Mom and I talked mostly just keeping my mind off of things and processing things that needed to be done.  Around 1pm I figured I had to eat.  I hadn't eaten at all and even though I wasn't hungry knew I had to eat so we went downstairs to split a cheese burger.  It was surprisingly really good.  Blue showed up about this time and we met in the hallway upstairs.  We walked back to the waiting room where I told Mom she could go home.  Cassie showed up after that, followed by Pink.  The Boy moved to Texas years before and was always hard to get a hold of.  We got to see Hubby for a while, hold his hand, talk to him.  Around 2pm they stopped his sedative.  They said it could take up to 90 minutes for him to wake up.  at 5:30 he still wasn't awake.  I took the kids down to eat although I couldn't eat anything.   Pink left as she had work the next day.  Blue and Cassie were with me when the Doctor called.  We met him in the waiting room near the ICU.  He said that he should have woken up by now, but hasn't.  It could go either way.  He could wake up and be fine and make a full recovery or never wake up again.  He has seen it go both ways.  Blue and Cassie were crying, I couldn't cry.  The doctor asked if I had any questions and I didn't.  We went to go in and see him.

My mind was full with how I was going to tell Ladybug that her Daddy was never coming home.  That even though she begged for him to spend time with her, that would never happen.  I didn't know how we would make it on our own, with only one salary.  How we would thrive.  All this was racing through my mind as we walked into his room in the ICU.  Room 13.  I walked around the bedside and held his hand.  I told him that I needed him to wake up and began to cry.  I told him he just needed to wake up and his eyes opened.  I cried even more.  Blue and Cassie were hugging me I broke down.  I talked to him for a while and he went back to sleep.  I thought for sure the next day he would be even better.  So I told the girls it was time to go home and rest and pray.  I went to pick up Ladybug to tell her what was really going on as she really didn't know.

Ladybug was so very mad at me for not bringing her to the hospital with me that day and not taking her right then but I was exhausted and knew that she would go the next day.  Blue was going to spend the night and the next day w/ Ladybug for me.  In case the hospital called about Hubby, I needed to be able to leave at a moments notice.  

Sleep came even worse than normal.  Nightmares about what was going on were many and ultimately I got up around 5:30 and was at the hospital at 6.  There was no change.  He didn't wake up anymore.  I held his hand and called his name.  That afternoon he would respond to his full name and cursing at him but little else.  He would eventually that day widen his eyes to answer certain questions.  His mom, Aunt and cousins saw him that day.  Ladybug and the other girls came by too.  It was a long, exhausting day.  I was playing music constantly for him as he loves music.  

He was to be in a coma like state for 2 weeks.  They would do two MRI's which would show nothing and an EEG which was just "slightly abnormal".  Ladybug and I were there every single day.  I spent about 10-12 hours there a day.  We would spend a lot of time praying for him, talking to him, putting essential oils on him, loving him, holding his hands, trying to calm him down (even though he wasn't really awake), reading to him, singing to him and just being there.  Ladybug was so resilient and never treated him differently than if he were sitting there wide awake.  The other kids had their issues with visiting him, still do.  

The third week in ICU he started to come around more but couldn't talk.  They put in a PICC line to make meds easier and also put in a Trachea Breathing Tube and a PEG Feeding Tube.  It looked like we were in for the long haul.  No one could tell me if he would come out of it and ever be himself again.  At the end of the third week they were going to move him to an Acute Care facility (hospital) because he couldn't remain in ICU forever.  This place was 30 minutes away from the house, whereas the hospital was only 10.  I also had to start going back into the office part time (I had been working remote for two weeks).  The day that they were going to move him my landlord called.  I had told him what was going on.  He stated that someone (a neighbor) had reported that I wasn't taking care of the lawn (although it had been mowed the week before by a friendly neighbor).  He wanted to come look at the property and house.  That was 10 minutes after I had showed up to see Hubby.  I had to leave to prepare for his visit and was in tears as I had never been away from him during the day and he looked mad at me.  So I left.  I mowed the lawn again myself when it was more than 90 outside.  I cleaned up the inside of the house while arguing w/ Ladybug for help.  Then the hospital calls and tells me he's being moved today.  I broke down and just cried.  I was having a panic attack.  Not knowing how I would do everything that needed to be done.  They said they could move him as late at 6pm.  So we kept cleaning the house and the landlord showed up an hour early.  I was covered in sweat and who knows what else and we went through the lawn and house.  He said he would make sure that everything was taken care of and that I was doing all that I could to keep everything up to date.  I took a shower then went to see Hubby before his move.  I had to pack up his things (three weeks, we had a lot of things over there) while Ladybug talked with him.  The people were already there to transfer him and put him on the gurney.  After I spoke w/ the nurses and transfer people I went up to Hubby and he was awake.  Ladybug was trying to get him to smile.  I asked him if he remembered the Mad song he had made up and sang it to him.  He smiled and tried to laugh.  This is when I knew he was himself and I nearly cried.  

It's now been almost 9 weeks since this has happened.  A lot has happened in that time.  He went to that place 30 minutes away and slept most of the first three days until we got meds regulated.  Then he started moving mountains.  He was awake and aware the Tuesday after his move (on a Friday) and when we came into the room he spread his arms out wide for a hug.  I would later be told by him that he didn't remember seeing/talking to us before then and that was like the first time he had seen us.  I asked him if he wanted a hug and he slowly nodded his head.  Ladybug and I in tears gave him hugs.  He cried too.  He still couldn't talk w/ the Trachea tube in.  I wrote down some words (our names) and asked him what that was.  He was able to point to the right people and it was amazing to know he could still read.  I wrote the ABC's on a piece of paper and he would spell things out for us.  Quickly he advanced to having the Trachea tube pulled out and bandaged.  He still couldn't talk well and sounded like a Scooby Doo Monster to me (and yes I told him this).  It would take time and a lot of effort to improve.  He still had a catheter and "brief" (diaper) on.  He didn't realize he was supposed to go in the brief.  I told him and he was so embarrassed.  He was a very private person so this was especially hard for him.  They ended up giving him stuff to help him GO and when he did he was embarrassed all over again.  As time would go on I would end up being the person to clean him after this would happen.  I would learn how to move the catheter bag when he needed to do something or was moved to the Cardiac Chair for us to take him on a walk.  We had to gown up like it was the beginning of the Zombie Apocalypse because his trachea site was infected.  This was especially hard on Ladybug.  

Ladybug got sick for a couple days during this time and couldn't come to see him, which broke her heart.  But we got into a schedule.  I would work at the office for a period of time then in his room the rest of the time.  We would begin to watch movies with him as he didn't have a roommate.  He was there maybe 2 weeks before he had progressed enough that he was to be moved again.  He was eating Pureed foods at this point too.  He was moved to a facility that was 20 minutes away from home and the first night he was moved, Ladybug and I cried at the horror of this place.  It was LOUD, crowded, smelled bad, looked old and was just everything we thought it shouldn't be.  I didn't realize I had to tour these places and felt horrible leaving him there, even overnight.  I was back to working full time in the office at this point and tried my best during the day to get him moved.  That evening when we saw him they were trying to get him to GO in a bed pan.  I asked that they give him some privacy (as much as you could have w/ a roommate and an 11 year old one curtain away.)  I was trying to talk to him and realized that the catheter bag was laying ON TOP of the bed and was over full.  I said something and his nurse gave me an attitude about it.  I told her that we would want to take him for a walk when he was done and she said we would have to take his feeding machine w/ us.  Long story short we had to get clearance from the dietitian (which I did) and she didn't like that at all either.  I was NOT happy at all with that place.  It took me a week and a half before I was able to get him moved to a place closer to home and I made sure I toured this place.  

"They" are right when they say you won't like any of these places, because you won't, but this place was better than where he was.  He had his own room for a couple of days before he got a roommate.  This roommate was better than the last one because the last one had the TV up really loud all night long.  The roommate was only there for a week and we did have some issues with the staff during this time not properly responding to the call light for the roommate when he had to be cleaned up after a bowel movement.  I reported her to the head nurse on site the next day.  Two hours that poor man had to lay in that.  Just not right.  By now Hubby was able to get into the wheelchair and in and out of the bathroom by himself.  It was a miracle when he got the catheter out and was able to pee for the first time and another one when he was able to have a bowel movement!  You never know what you have until it's gone.  

He's been in this place for three weeks now and although it's not the best, it could be worse.  I've been able to take him home once a week on a weekend day for him to be able to be at home for a bit.  He's able to walk w/ a walker if the Physical Therapist or myself is with him and we try to walk at least once per day when we visit.  I am able to give him showers every night too.  I haven't missed a day of visiting him regardless of what's going on.  I'm there every time he has dinner and help him with the shower and into bed before leaving to shower and go to bed myself.  He might be coming home in 2-4 weeks.  I'm hoping he goes to one more rehab place that will do intense rehab for 3 hours per day to get him really ready to come home.  

It's been a while since Ladybug and I have able to do something, just the two of us.  I feel that I'm neglecting her in some way but I can't do everything all the time and I'm hoping that there will come a time soon that we can do something just the two of us again.  She's had to grow up a lot these last couple of months and I'm both glad and sorry for it.  I hope that this situation teaches her patience and strength.  I hope that as time moves forward that we are able to work as a team to do what needs to be done without argument, but I won't hold my breath.  

As much as I have thought I wish I had the problems I thought I had three months ago, instead of these problems I have now, I'm not sure I would change things.  Hubby is a different person.  He's more patient and caring.  Although he's had outbursts, he has also apologized to Ladybug, which he never would have before.  He's more understanding and appreciative of what he has and who he has.  He seems to understand that family is more important than he ever thought before.  He even went to a family event with my family one day, which he hasn't been in years due to some problems.  He wants to be different and doesn't like who he was before this all happened.  This event changed him for sure but it's also changed me.  I really try to be more patient than I am used to and try to think my responses through when he's upset.  I just wish I wasn't so snappy at Ladybug and knew the magic thing to say to get her to help out more often where I need it.  Maybe that will also come in time.