Taking Our Time

Since my sister died I have wanted to blog again. The reason it has taken me this long is two fold. One: everything takes so much energy.  I have a lot of thoughts in my head for this blog but capturing them and sitting in one place to type them out...well, it just feels really monumentally exhausting.  Two: there is this part of me that feels like going back to normal is wrong. Because nothing is normal.  Because there can never be normal like there used to be, there can only be the new normal and so far the new normal sucks. But you know what?  In fairness even as I type this I know it is wrong.  Being without my sister sucks more than anything that has ever sucked in my life.  But- the new normal means I am much closer with my brother in law AND I  talk to Olivia and Madison a lot more than ever before.  Those things don't suck.  Those things are a gift.  I also feel like a better teacher.  I don't get so annoyed when in the middle of my lesson a 6 year old announces she is bleeding, because giving that girl a band-aid is more important to her at that moment than her being able to make a text to self connection.  I also am spending more time listening to my daughter.  You know why?  Because in the last 2 months I realized Kristin was a fantastic listener for her daughters and also that she spent so much time doing cool things with them.  The girls miss baking and doing crafts with her.  I worry if I were gone, Krista would only be able to miss my nagging at her.  I also have the gift of realizing how strong my husband's arms are.  It helps me remember to appreciate the gift of him way more often than I have been.

Tomorrow it will be 2 weeks that I have been in the world without my sister.  That Joe has been in the world without his wife and that Madison and Olivia have been in the world without their mom. And I know Kristin, who was my biggest cheerleader, would want me to blog again if that is what I feel I should do.  And it is.  Because I want the world to know what happened in the last 2 months.  The amazing person my sister proved herself to be even though none of us who love her needed any such proof.

For today, I will leave you with this.  Many of you have heard me talk in the last 2 months about how close Kristin and I were even though we were very different humans.  And so for those of you who witnessed first hand the grace with which Kristin took her diagnosis and her prognosis, know this:  If this happens to me.  I will not be anywhere near as full as grace.  I will be throwing stuff at people, screaming at the top of my lungs, and making nurses run in fear. Doctors?  Nope, they won't want to enter because I already know that for some irrational reason I will blame them.  I will blame everyone and I will be angry.  In fact, I am quite angry now even though it wasn't my diagnosis or prognosis.  I just don't get it.  And I think that is where this blog can end for today.  I just don't get it.  Nobody does.  That is the MOST frustrating part of this whole shitty thing.  We just have to hold each other through the shittiness (apparently that isn't a real word) and remember that things will get better once we get used to what the new  normal is....and we have as long as we need for that to happen.

The lesson

I will be taking a short hiatus from this blog for awhile.  And by short I mean I have no idea when I will feel like writing again.  My heart is breaking into a million pieces and that doesn't make for a very good uplifting blog. 

If you take NOTHING else away from these posts I have been writing take this.  Memories count.  Make them every SINGLE DAY.  Don't waste a day.  DON'T WASTE A DAY. 

We are not alone

As I have mentioned before I only feel comfortable writing about my journey throughout my mother's death.  Everybody experiences situations in their own way and I cannot tell you how my brother or my sister experienced their journey.  I can, however, tell you how the process of their own journey affected mine. Today, lets focus on my sister, Kristin.

Throughout life your big sister (or at least mine anyway) can be your protector, your therapist, your go between when you are a teenager and having a fight with your mom, your ally and your best friend.  Yes, that is true even when you want to wring each other's necks because you are sisters.  You share something that nobody else can share with you.  I am not really sure how to best describe that sister thing but it is amazing because even in being very different people, you share something special in your heart. 

So, my sister lives in Chicago.  For her this made my mother's process much harder because every time Kristin came out to Massachusetts she was leaving her support system.  She was leaving her kids, husband, job and friends to be with mom.  She came to be with mom, but I believe she also came as a support to me.  Even if she didn't to that intentionally that is what she was.  Every time I think of those days, I picture Kristin in one chair and myself in the other and lots and lots of laughter.  Isn't that amazing?  There we are with our mother dying and sisters can laugh together.  Oh yes, mom was laughing too!!!  I also remember when my sister got there mom's hospital room started to look more like it should.  Kristin brought beaded necklaces that her girls had made and they were hanging off IV poles and such!!! 

The other thing that Kristin brought to the table was her anger.  For those who know Kristin she never backs down from her anger and although at times (like when that anger was directed at me) that is scary, in the hospital that is exactly what we needed.  Kristin got things done and wasn't afraid to tell people she was pissed and she was taking action.  That gave me strength to be more pissed at some of the injustices we faced.  Anger in the face of death is absolutely natural and Kristin has taught me it is okay not to back down from your anger and it okay to let people know you feel that way. 

My sister made things easier for me.  In the end, I think that is what siblings are for.  We make things easier for each other.  We hold together in the face of the storm and we don't let go of each other.  When the storm blows past and you look around you, the people closest- that's your family.  Love them with all your heart and remind them you love them every chance you get.

Vacation

I am leaving for the ocean (one of mine and mom's fav places)  today and will be back to the blog on Wednesday morning.  Be Well.

Winning Team

My cell rang as I was walking onto mom's hospital floor. I was so tired of seeing "St Vincents" come up on my display.  The nurse informed me that my mom was refusing any more tests.  That if she refuses, they cannot do more to help her.  That I need to come talk to my mom.  "I am almost there," I told her and turned the corner to her desk with a big wave.  She told me the  attendant had come to get mom for a catscan and she had sent him away.  I walked into mom's room loaded for bear. 
"So that's it?  You're giving up?" 
"What are you talking about? I am not giving up." 
She informed me then that they just keep coming to get to her for more tests and she told them she was not taking another test until the doctor came to talk to her about all these tests.  Wow, did I have pride at that moment.  These people didn't want me to talk to my mom because her health was at stake.  They wanted me to calm her down so they could do their job without her being a pain in their butts.  And yet, what she was asking was so reasonable and she had the stuff.  The stuff that says, "I am a fighter and dammit you won't just do whatever you want." 
I walked back to my friend at the nurse's station and told her I spoke with my mom.  "Oh good, I will reschedule the catscan."  "Um, not exactly," I said with pride in my voice.  "We need to talk with a doctor before mom has any more tests.  She wants to know what is going on."  "But we have to go on doctor's orders."  I told the nurse we understood that she has to go on doctor's orders but she would need to tell the doctor that the patient was refusing until a doctor spoke to us that day.  It was the shortest time frame it ever took for the doctor to get to us.  Unfortunately, she was in a quandary because she was giving a bunch of tests not really knowing what was wrong.  Also for the insurance to keep paying for the hospital stay the doctor has to keep ordering tests.  Welcome to frigging America!
The best was seeing mom's smug little smile at the end of the visit when she said, "I will take the catscan now. Thank you for coming to tell me what was going on with my health."  ZING! 
The spunk she showed that day was one of the best times I had in the hospital with her.  The  nurses wanted me to talk some sense into her.  Instead she and I teamed up and staged our demonstration.  It was nice to have a win as a team.  I miss that.

What is Hell?

While someone you love is in the hospital life goes on at it's regular pace, but you feel just enough on the edge to know you are not really a part of that life.  You go through the motions and you appear okay to those around you.  But, the only thought that motivates you throughout the day is getting to the moment you can break free and be with that person. 
So, cut to a day when my cousin Lisa and my aunts came to visit.  I was so happy to have family connected to mom, with me!  My aunts are the most fun people, I daresay in the world.  They are filled with laughter (as was mom) and they have the kindest hearts and the best hugs.  Oh, those hugs.  Lisa has all that, too and I was lifted up that they were with me. 
Now, I don't remember the circumstances of going to Dunkin Donuts.  I know Krista was in the car with me and my aunts and Lisa were in another car.  This particular Dunkin Donuts has the worst parking.  I backed out of my spot and got in line behind the guy who was already in line.  We were heading to the hospital, I was thrilled to have family with me, I was feeling positive but my head wasn't on the parking lot, only getting out of there. I was annoyed that the line was so long to get out and the guy in front of me kept putting his reverse lights on.  We sat there what felt like a very long time and then I realize he was waving his hands like a maniac for me to back up.  He was actually backing into my spot.  You could tell he was livid and as I put my window down to apologize he was muttering all kinds of things.  At this point he was backed in spot (which by the way was ridiculous in this parking lot because I had no way to go around him so I had to back almost on to road to let him into my spot.)  I rolled down my window knowing he was angry and calmly said,  "I am really sorry sir, I had no way to know you were trying to back into my spot."  He got out of his car, did not even glance in my direction, and yelled,  "Go to hell Lady." 
Now, on any normal day I would have been just as shocked as I was that day, but something was so weird.  I wanted to (but didn't) yell, "Hey asshole, guess what...I am there."  I debated with all my heart walking in right behind that guy and giving him a piece of my mind.  Like "all that time you were trying to reverse and getting pissed at me that I couldn't read your stupid mind about making a stupid parking lot move, why didnt you just open your door and yell back to me asking me to move so you could park."
I didn't because I had Krista with me and figured guy could be crazy.  Also I had somewhere way more important to be.  Finally, because the mature part of me realized that if he was telling me to go to hell over a parking space, that dude may have been in a worse hell than mine. You see my mom was dying, but I wasn't giving up on life.  I still took joy in what was around me.  I still could laugh. I still could hug.  Preparing yourself to say goodbye is not going to be easy, but we still get to choose how we let it affect us.  I figured that man's hell was worse because he was choosing hate and anger.  I hope he has moved past that in his journey.  I also hope that once in awhile he thinks about that time  and wishes he could take it back.  It is a good reminder to me when I get upset with people to remember I have no idea what journey they are traveling right now. And as mom would say (I was reminded by my aunt just the other day) we have the potential everyday to be Jesus with skin on to those around us.  Think about that for awhile.  Jesus with skin on.  Our potential for compassion knows no bounds.  Amazing.

The gift

I need to move away from doctors and hospitals a little bit and just talk about mom's relationship with the world around her.  As we came to the end, and I could not quote you any exact dates or times, but as she came in an out of the acute hospital and when she landed in a new rehab because her former rehab said she was "too sick" for them to be medically able to handle her care, she started to make her world smaller.  I didn't think much of it at the time. I was still living in sharp denial of the end being close.  And some of the friends who read this now, might be surprised at what I am about to say, but she asked me not to accept phone calls for her any more.  So, she stopped answering her phone and while I was there if I answered she wanted me to make excuses about why she couldn't talk.  She told me this was because she needed energy focused on what she needed to do to get better. Only now do I realize she was preparing herself and the people she loved for the end. 
Our conversations became more centered on immediate family and our plans for the future, but not so much her plans for the future any more.  One day when she seemed really sick and out of it I heard a nurse ask her what was wrong and my mom (who was not aware I was outside the door) said, "I am so worried about my kids. I don't know what they will do without me."  It was that nurse who later told my brother and I when we asked about mom's health.  Look she is really sick, but I have seen patients fight hard and get better.  If she has strength of spirit she will get better.
Right this moment, as I write this, I know exactly why that comment has bothered me so much all of this time.  She is wrong.  Strength of spirit does not always mean you fight to be healthy again.  Strength of spirit means you are strong enough to let go.  I believe mom fought with all her might, but that she knew before any of us her time was at the end. I believe her strength of spirit kept her alive long enough for her kids to be ready to say goodbye.  What an amazing gift.

The difference

Yesterday I sat in church and my mind continually went back to my mom.  I was trying to pray for someone special who has been in an awful lot of pain recently and mom kept popping up.  I thought about how much going to church with her meant to me.  When everybody went their own way and it was just her and I at home we had some rough times, of course.  Come on, I was a teenager, but church was always the one place we became partners again.
Mom would sing proudly and that is why I sing so proudly.  Mom would stand up straight and tall and hardly move during the mass and that is why I do the same.  So much of what I am I owe to my mom, but she doesn't know it.  I mean I am sure she knows it on some level, but I just want to sit and talk to her and say two things. Thank you and I am sorry.  Thank you for just everything and I am sorry because now that I have a 12 year old I know what a pain in the ass I was.  I love my daughter with all my heart, but come on she is 12 and some days that means I am counting the minutes until she moves out and into a dorm room.  Let's be real.
So in the middle of reliving my mom's last months in this life, I am struck by the fact that I got so much time with her at the end.  I thank God for that time even with all that pain that accompanied it.  When my dad died it was sudden and unexpected.  I mean we figured he would be dying for about 10 years before he actually did because he was not a healthy guy, but he was living life fully right up to the last as he was trying on sports coats in Sears when he had a massive heart attack.   That was shocking to say the least.  But if I had to tell you which way was better, I would choose mom's way.  Remember it is me choosing not her.  She lived the pain.  She might say something different.  But, you know, we had a chance to relive memories together, to pray together, to sit silently together.  In the midst of the storm that was the end, I did get to say how much I loved her.  I did thank her.  I did tell her I know that she was worried about me but that I would be okay.  Because I told her that, I knew I had to live that.  Making her the promise that I would be okay meant I had to keep that promise and that has made all the difference.

Something must be wrong

As I said when I started blogging about mom's dying, sometimes events will be out of order.  I feel the need to begin with that because today I would like to write about another time I was left waiting and anxious while mom assumed I just wasn't there. 
At this point she was back in the acute hospital.  The infection had apparently spread to her blood stream and now they were going to do a test (I can't remember the name of) to see if any infection was on her organs, especially focused on her heart.  For this test they would be inserting a camera, similar to, but not an upper endoscopy.  She was very nervous about this test and although she was heavily drugged she would be awake and aware during the whole procedure.  Before that though they had to place a new pic line because her arm had a blood clot so they were switching to her other arm.  I asked her if she wanted me involved in that one and she said no.  I waited with her outside of the room with her on her stretcher and me uncomfortable standing in the hallway.  At this point she was pretty weak and each new test brought me concern that it would be the last time I would see her.  Finally, they brought her in and the secretary (different from yesterday's secretary in her sweetness) brought me a pager and said they would page me when mom was finished so that I could roam the hospital.  Roam I did (thank God) because the first place I roamed to was to the part of the hospital they would be doing the next test. I wanted to be sure I knew where it was so I would not be stressed in front of mom. 
After an hour went by I checked in with the secretary who kindly reminded me they would page me when she was done.  Putting in a pic line should not ever take an hour but they had been having trouble with blood clots and her arms were swollen.  After 2 hours though I became freaked out and assured the secretary that if they were still placing the pic there was some kind of problem and I needed to be in there with her.  She agreeably went to check on things and came back with a sheepish look on her face.  They had finished over an hour before that.  She said, "You should be able to find her back in her room."  "Oh no I won't,"  I stated. "She was supposed to have another test and I was supposed to be there with her."  The secretary apologized up and down that I had not been paged.  I don't remember assuring her that it was alright because it absolutely wasn't alright.
I found mom in the next place.  The doctors let me walk right in but they had already started the test and in fact, were almost finished.  The good news they had for us as they sat looking at her heart was that the infection was not there.
We were often getting some kind of "good news" from the doctors and tests that never matched up with what was happening to my mom.  She was dying.  We just weren't sure what was physically killing her.  Once they had used up every test they knew to give her they would sent her back to the rehab hospital sicker than she was before.  To the point that one time the original rehab refused to take her.  She was too sick for them to manage they told us and so we had to find another rehab.  When my sister questioned the doctor about continuing to send mom out when she was sicker they informed us that if there is no test to be done she can't just stay in the hospital.  We just found that so ...GROSS.  When you go to a hospital I always assumed you either died or came home better.  Why was my mom continually going to rehab sicker than when she entered the hospital and yet everybody said she should be getting better.  If they could have just had the knowledge that, "no, she shouldn't be getting better."  We would have made some plans for how she could end her life happily at home.  But we were still dragging her through everything so that she might get better.  In fairness, she was fighting the good fight too.  She wanted to get better and to do that we needed to know what was wrong. 
Meanwhile, mom and I talked about everything under the sun except dying.  Mostly I told her about what Krista was doing and she and I made plans for when she came home.  She was so damn lonely in the hospitals and she got great pleasure when I showed up at 330.  She counted on that time.  I take some peace in that. 

Where is the fight?

One day when I went to visit mom she was in distress.  "Jen it was awful" she told me about the nurse who changed her dressing. "Her name tag kept hitting my leg and the pain was so intense, not to mention she can get germs in it."  It seemed the counselor in charge of working with us was never actually at the rehab hospital so I left a message telling her that was unacceptable. The next thing I knew that nurse was assigned to a whole different floor.  I know this because I was there everyday from 3:30 to 6ish and she would be getting on the elevator and heading to a different floor. She didn't speak to me and I didn't care.  My head was focused on one thing only...what my mom needed. 
Speaking of that, most often what my mom needed was someone to be with her at doctor's appointments.  This lovely woman was on some heavy pain medication that helped her to forget.  The problem with that is when you have to make decisions about your health care you don't want to be forgetting what the doctor is saying to you.  That being said, I made arrangements to be at as many of her doctor's appointments as possible.  She was taken by rehab transport on a stretcher and I met her there. 
One day she was scheduled to have her leg looked at as they were thinking of when they might start grafting.  This was also when she seemed to be getting sicker. She was weak and unable to eat.  I got out of work as early as possible and headed to the hospital where the appointment was beginning at 3:30.  I had already had some experience with this secretary and so I was prepared for the nasty sneer she had on her face.  I told her my mom was in for an appointment and I was supposed to be with her.  She said, "Well she is with the doctor."  I explained patiently that I knew that but that I was supposed to be with her.  To this day I cannot imagine I am the only patient who needed to be with her mother while the doctor worked with her, but the secretary seemed so very confused.  She told me to sit in the waiting room and she would page the nurse that was with them to see if it was okay.  This next part makes me so mad at myself.  I sat there waiting until 5:00.  I am not sure what it was that kept me sitting there and not asking her what the nurse had said.  All I know is that at 5:00 the nurse walked out with his backpack on and clearly, knowing someone should no longer be in the waiting room because all patients were gone, he asked who I was waiting for.  When I explained to him what I was doing there he got a horrified look on his face and told me to wait right there.  The next thing I know a (I assume some kind of manager) came out and apologized profusely.  You see, the secretary never did page the nurse and so at 4:30 the rehab emts had wheeled my mom out the back door and back to the rehab hosital while I sat there waiting to get in.  To this day I wish I had raged in anger and yelled and screamed.  But I didn't.  They didnt even have me go near the secretary and they got the doctor who agreed to sit with me and tell me everything that had happened during the appointment.  I focused on the goodness of the doctor and not the total ineptness of the secretary.  I drove right to Fairlawn and filled my mom in on what happened.  She was like a balloon that all of the air had been let out of.  She didn't seem angry or sad that I wasn't there. Only really, really exhausted.  She told me not to be mad.  She told me to go home and get rest. 
The great news was the leg was getting better.  That damn leg was driving us crazy.  The big question would continue to be, "Why was the leg healing so well when my mom appeared to be getting sicker and sicker?"   The bigger question I will focus more on in upcoming posts is, "Was my mom giving up?"  In the next few posts you will read more about doctors and nurses telling us mom had to fight.  I think they were wrong.  I think the day I felt Peggy in that room mom was already on the journey to die.  I believe mom knew it too and I get upset with anyone who would insinuate she just wasn't fighting.  Much later, when we found out what was actually happening inside her body I would realize she had been fighting longer than many would have expected. 

The visit

Before I talk about the first time I knew something was wrong I want to tell you about something that happened.  As those who know me know, I am an open book.  This means I will tell almost anything to almost anyone as long as it doesn't interfere with someone else's privacy.  What people often don't know about me is that means what you don't know about me or something that has happened in my life, you will never know. I know better than most how to keep something close to the chest so to speak.  You might even say I give the illusion of knowing so much about me that nobody thinks there might be so much more that I am not saying. 

So, this next part is not something I tell lightly only because I don't want to hear it from people who don't believe what I am about to say.  I trust my readers of this blog, though and I know you will understand or at least move past it with a willingness to forgive my indulgence and belief in what happened one day when I went to visit my mom before there were outward signs that things were not progressing as they should.

I brought her cup of soup and we did our usual talking and laughing and planning.  And all of a sudden around her I knew (I didn't see or hear anything, only felt) that her friend Peggy was in the room with us.  Now Peggy had been one of mom's best friends and had died from cancer years before my mom.  I had never seen my mom's heart ache like it did when Peggy died.  I cannot even explain how I knew Peggy was there...I felt her is all I can say.  I knew right then and there that she was there because mom was going to die.  But, I kept this to myself and within a few days had tossed it off as me being exhausted.  I think I did that because I wasn't ready to accept my mom's death.  I also wish I had asked my mom about it. Did she know Peggy was there?  But, I remember I specifically didn't because I didn't want her to worry about her death.  There were so many times in those three months that I didn't bring up dying because I didn't want her to worry about dying.  That probably was a mistake.  Mom knew before all of us and even the doctors that she was dying.  I wonder if she knew on that day.  I wonder if she felt, saw or spoke with Peggy on that day or any other after that. 

It would be a few days after that that mom stopped being able to keep food down.  Michael came for a visit and she told us she had a dream about our dad.  He was in a kitchen and she said, "John, did you come to see me?" and he said, "Pat, I am not here for you. I came to be with the kids.  They need me."  Looking back I know that this was mom opening up the conversation that she was going to die.  But, you see, this was not yet matching with what the doctors were telling us or even what we were seeing. She and I were still talking, laughing and planning.  I was bringing her soup and cheese and crackers everyday.  Sure, she had stopped eating and they were getting worried the leg couldn't heal if she didn't eat but that certainly didn't equal death in my book. 

Our hearts and minds accept what needs to be accepted when we are ready.  I was not ready.  Mom appeared ready but in the next three months she would battle with God a bit about not being ready to leave her family.  It was heartwrencing and yet amazing to watch.  This story is about mom dying, me growing up, and also, about that fact that since mom's death you would never be able to convince me that God does not exist. 

Decisions

It gets more difficult to decide what to write about here.  The reason is because events go in no particular order in my head.  I am afraid of writing something that is not truthful, but know that if that happens it is only in the order of the details.  From rehab she went to the hospital so many times and I forget the what and why of each of those times.  I have to remind myself that is not what is important here, but for the sake of the reader I want to be honest that some of these events will definitely be told out of order and sometimes I will have her go back to the hospital for something and that might not have been the time she went to the hospital for that particular thing. 

So, how do you decide on a rehab you say?  Well, they court you in the hospital and you pretty much go with the one who has the reputation and agrees to take the person who is rehabbing.  So we went with one and the EMTs came to pick her up.  I met her over there and I can honestly say that I was not impressed.  The building itself from the outside looked haunted and from the inside appeared to be falling apart.  Mom's doctor was a woman who I believe was russian and appeared to be 70 years old.  I know how bad that sounds but I also know what we went through and I wanted a tough, healthy doctor who could make everything appear better.  Well, mom's doctor came to be a light in the storm and grew a wonderful relationship with her patient. 

We got her settled in and let me say, she was feeling much better.  The only thing that had to remain a constant were the pain pills. Especially needing to have her leg cleaned and rewrapped every single day the pain was more intense than anything I have ever witnessed.  From knee to ankle it was all exposed nerve.  It was important that she have a pain pill 30 minutes prior to the work they would do on her leg.  This would come to be the biggest beef I had with the rehab hospital.  Apparently, they could not quite get the timing of those damn pain pills down and often the work began before any pain pill had been administered and often she was calling for over a half hour for her pain pill.   I actually got so mad that I called the counselor who worked with us in the rehab and said, "If they cannot keep the pills on the schedule I am happy to show up everyday at the time the pills are needed and remind them and if I am working I can call them,"  Interestingly it got a little better after that. 

Physical therapy started right away and mom began to walk with a walker and could take herself down the hall to the bathroom as long as someone was there if she fell.  I began work again and would work until 3:30 and then head right to rehab.  Krista would go stay with our friends until I got home.  Usually they would feed her and I would grab Mcdonalds for myself on the way home.  I stayed as late as I could and often it was such a struggle mentally for me to leave.  I brought magazines and books on CDs and tried to make mom laugh as much as possible.  She needed to eat lots of protein for the leg to heal so I would stop at Elsa's everyday and bring her soup and coffee and myself a coffee.  We made lists of things we would need for her to come home.  A temporary ramp and some different things in her apartment to help her get around until she was fully healed. 

Michael came to visit and brought her outside in her wheel chair and then I realized I could do that too.  The next day I brought her out to a place I could sit too.  It was the PERFECT fall day and we laughed and made plans for the future.  It appeared this had just been a small blip in our path and we were on the way back to our plans for the future. 

It was scary because that leg was going to take a long time to heal.  It was hard on mom because physical therapy was not easy and there were times she wanted to give up.  I can remember one time she got extra mad and said,  "you should have just let me die."  I was so upset but since then I have read so much about people needing to teach themselves to walk again and such, and I realize I was not really sympathetic to her journey at that time.  She was in pain almost constantly and physical therapy doesn't stop because you have pain. 

It sounds better here I know and it was, but it became hard to juggle wanting to see mom and just be with her, plus bring her anything she asked for, the food from the restaurant and do her laundry and get that to her in what she felt was a reasonable time, plus be a good and attentive mom and a good and attentive teacher.  Mentally I was starting to lose it going back and forth each day.  What I really wanted was to stop working for awhile so I could see mom while Krista was at school and then be there for Krista.  I began to contemplate a short leave of absence.  Mom was getting better but she preferred having me there when they cleaned and wrapped her leg.  She needed someone to be on top of them about the pills.  She also needed company and that is what family is all about.  I had some heavy decisions to make.  Little did I know that God had other plans and soon all decisions would be lifted from me only to be replaced with bigger concerns and much bigger decisions. 

Recovery

The doctor came out himself to tell us mom had survived the surgery and was expected to make a full recovery.  Isn't that odd?  You go from waiting to hear she has died to making a full recovery in just a few hours and you wonder, "Did I go all crazy drama all of a sudden or was the drama real?"  They had debrided her leg from knee to ankle to remove the infection.  She had a wound that would need lots of care in the next few months, but the infection was gone.  She should be able to breathe on her own the next day when they took the breathing tube out.  She would continue in this doctor's care until the wound was healed and there was a possibility of skin grafting down the road but the wound had to do some serious healing first.

That was the beginning of what I would come to call the push to get us out of the hospital. The breathing tube was taken out and we sat with our breath held waiting to see her breathe on her own.  It took so long that I was scared they would have to put it back in.  But she did start breathing on her own.  She started to be driven crazy by us hanging around her so we would go read magazines and laugh and chat in the atrium of the hospital.

She was scheduled to come out of ICU and she was drugged to the maximum so we decided to wait to go home until she had made the move.  The problem was that it takes a long time for beds to open up in hospitals and although they wanted the room in ICU, they didn't have the room on the vascular floor.  So, low and behold, she told us to go home and we did. Later that night, possibly 8ish I realized I had the one thing mom really wanted, her glasses.  My then boyfriend, now husband drove me over and I ran into the hospital to give them to her.  They had moved her to the vascular floor within a half hour of my arriving.  I walked into her darkened room and she said, "Oh Jen, I am so glad you are here.  They said I was going in for surgery and then they brought me into this dark room and nobody is around. I am not sure what I am supposed to do."  She was scared and so alone and I kept thinking if I had not come in right then, who would have calmed her?  So, I got her settled and told her it was alright.  Surgery was over.  She was in this room to sleep now.  I then went straight to the desk where they assured me that it was because of the many drugs in her system and there would be some confusion for a few days until the drugs cleared out. 

When I got into our car I started what I call gasp crying. It is the kind of cry you often hold in because it has the power to consume you.  It was so hard to see my mom so alone in that room and so confused.  Eric asked me if I thought I should stay and although I wanted to more than anything, I knew that the nurses were right.  She was drugged and confused and she would sleep soon.  I went home that night, but it would be the last time I made that decision when she was in the hospital. 

And though we were promised a full recovery, for the next three plus months my family and I would come to know that hospital intimately.  It would become the place where we comforted each other as we cried, where we chased down doctors to get answers to our questions, where we complained about the fact that they kept sending her out too soon, and eventually where we said goodbye to our mom. 

For now I am leaving us on the road to recovery.  The next stop was a rehab hospital, but it is not time to go there just yet.  At each place on this journey it is important to stop and sift through the memories.  It is important as I go through this to hold onto to each one just a little longer after I have written it as if it is a bubble out of the bottle that has not yet burst.  I can watch the memory unfold in the bubble and then watch it drift out of my hands and slowly away from me to sit on the branch of a tree every so precariously before it pops and is gone for good.  The memories will never be gone for good, but I am hoping some of the pain associated with them can leave on that bubble.  I don't want to take the pain with me.

one in three

The more I write about what happened, the more it sticks with me and haunts me when I try to sleep at night.  And yet, I think if it just all gets out on paper, I may be able to sleep better over all.  I don't think my story is any different than many people out there but its mine and I am choosing to write it.  I don't think my mom is any better than moms of people out there yet she is mine and I am choosing to share her.
The next part becomes a blurr.  Mom was intubated and the machine did her breathing for her.  The ICU is a scary and dramatic place, but the waiting room is like a thousand times better than anywhere else in the hospital.  I really cannot remember what we did or if we even spoke to each other.  I mean I am sure we must have but there is no memory of it at all.  At some point a doctor came out.  How I wish I could pretend to you that I remembered his name, but I didn't.  Nobody's name really mattered to me.  He wanted to have a conference with us.  The PA came out and said,  "That call you needed to make, now would be a good time to call your sister."  Those words held so much meaning and the weight of them dragged me down.  I don't remember if I called Kristin or if Michael did but the next part seems funny in its awfulness.  We decided to do a conference call which basically boiled down to us in a room with the doctor and a phone turned toward him so Kristin could hear what he was saying.  He told us that mom had been misdiagnosed with the pulmonary embolism. That as they watched her leg it had begun turning black.  She was infected with necrotizing faciitis.  For the layperson that would be called the flesh eating bacteria.  Mom needed to have emergency surgery to remove the infection or she would die.  She could die in surgery though.  I remember intaking my breath so much that it made a loud noise.  The doctor left us alone to discuss it.  I cried to Michael that I couldn't lose my best friend.  We picked up the phone.  (at this point I think it was me) and I asked Kristin what she thought.  Her reply,  "I couldn't hear a thing."  This was one of those funny/not so funny things you remember that happen and in your head you say, "Now I have to repeat out loud that she may die."  Oh, I forgot to mention that he came up with a statistic for us.  1 in 3 survive the surgery when it has gone as far as it had with my mom. 
Because it was a conference with us I am sure we must have had to make a decision about the surgery.  Yet, what kind of decision is there really to make?  Definitely die without surgery.  1 in 3 chance of survival with surgery. 
Yet, mom was conscious so he had to ask her too.  He really didn't.  He more told her that is what he needed to do and she said, "do it."  Rather it was probably a nod of her head.  But then he said, "during surgery we may find the infection has progressed and we may need to take your leg.  Do I have permission to amputate your leg?"  That led mom to stop and think and I all I could do was hold my breath.  She was not going to give him permission to amputate.  He asked her if she was playing with her grandchildren before coming to the hospital?  Then he said, "would you rather play with them again with one leg or not see them again?"  Okay, yes he was harsh in this but we all needed her to see it was life without her leg or no life.  I remember exactly how she said it and I wish I could do it for you.  She was like a little kid hearing she wasn't getting what she wanted.  "Fine."  We kissed her goodbye and they moved fast.  She was prepped and off she went.  The doctors prepared us to settle in for the night.
At this point, I think Kristin was making arrangements to fly as soon as possible.  I am sure Michael and I talked, but I just can't remember a thing except crying because I might never see my mom again. There was so much  I wanted to tell her.  There was so much laughter we still had to share.  There was so much I needed her for.  I just was not ready for this.    I think I remember coffee.  I know I remember other people being brought into that waiting room and hearing news that made them suffer and cry.  In that waiting room you were one group of suffering, but also very much alone in your group.  You wanted to tell other people it would be okay and you were all in this together, but suffering is so damn personal.  Nobody can really be in with you except the people suffering over the same damn person you are.  Michael and Kristin were my life raft in this drama and even then, nothing made it better. 
This is probably a good time to bring up God.  Of course I talked to Him through this entire thing, but truthfully, what God gave me during this time was my brother and sister.  Because I could pray with the best of them but I needed human hugs and hearts to make me feel any kind of "this will get better."  Michael and I settled in for the wait.

Where are the doctors?

In preparing for this next post I have done a lot of thinking.  No matter how hard I dig into these memories I just can't always remember the order of things.  For example, I know we called Kristin and filled her in.  She wanted to come but it wasn't quite time yet.  We didn't want her to fly all the way out without more information.  I don't remember when we called Kristin.  I just know that we all decided that we would talk to the doctors and call her again with their advice. 

Mom did not sleep well.  She moaned and spoke gibberish and woke up still in fierce pain which she described as worse.  Mary assured us that all would be better.  The doctors came through at some point and although wanting to feel reassured, the doctors didn't really have much to say to us.  Also, take note, this was a teaching hospital.  Almost never was there one doctor coming through which made it harder (or feel harder) to stop them and really asked questions....and what more could we ask aside from, "Is she going to be okay?"  And what more could they tell us with her pulmonary embolism.  Thank God, somewhere down the road there was going to be a doctor who said, "This pain in her leg that isn't going away, something isn't ringing up right."

At some point, I received a phone call from the doctor's office.  Remember my mom had been at the doctor the day before.  They said one of her blood tests came back positive and she needed to get to the hospital right away.  I informed them that she was there.  They asked what was going on. They told me to tell doctors the results of the test.  They told me to "keep them updated."  When I informed my brother of this, he became enraged that they would ask us to keep them informed.  I remember him calling to complain.  Who cares what they said or how it came out in the end?  The fact is we had someone to be angry with and that helped a lot.  It got better when they called to say mom had missed her appointment that afternoon and I informed them for the second time that she was in the hospital.  I was disgusted with the lack of communication in their office and I was done with them. 

At approximately 1:00 that afternoon, mom started to get really crazy with her gibberish.  She was telling me as she shook with fever that now she knew how her dad died and this was her time to go and on and on.  I was freaked out and Mary called the doctors with this new information.  They informed her they were coming.  They didn't.  Mary called the doctors again at 2:00.  They said they were coming.  They didn't.  My brother and I were both scared and angry.  Where the hell were our saviors?  At 3:00 Mary checked mom's blood pressure and called an emergency.  I don't know how a nurse does this and I assume they can get in lots of trouble if doctors arrive and there is no emergency, but the doctors got their asses there within seconds.  In fact, it was frightening how quickly they were there after Mary checked mom's blood pressure.  The room became a frenzy of doctors in motion ( a whole team)  checking blood pressure, seemingly yelling, "Mrs. Lotane can you hear us?  How are you feeling?"  While in one fluid motion 2 doctors grabbed her bed and started wheeling her to do the door.  I will never forget the physician's assisant (who later helped us come to terms with letting mom go) talking to us as he wheeled her by the head of the bed and the team moved all around him.  The next 6 hours would be critical he said.  They were taking her to ICU where they would intubate her.  We were not sure what was happening still, but her blood pressure had taken a massive drop.  My brother told the PA that my sister was waiting for a call telling her if she should come.  The PA said, "hold off on that call just now.  Let's see where the next six hours bring us." 

Mary was getting ready to go home.  She stopped by the waiting room.  I broke down in her arms yet again and she said, "Its going to be okay now.  ICU is the best place in the hospital because she will have just one nurse who is solely watching over her.  She is in the best place."   Every time I think of Mary I am reminded how we make our jobs what they are. Mary had several choices about how to treat the family of her patients and she had made the choice to make a difference.  I wish I could thank her everyday for her caring.  Because really when your dad has died and your mom needs taking care of...who takes care of you?  Michael, Kristin and I would come to lean on each other more than we ever had.  I would continue growing up.  The journey had only just begun.

The First Day

So, here I am back to the blog.  Before the summer ends it is really important that I work on finishing the story of how I grew up as my mother died.  It is important because people have asked me to do it.  And so here and there there will be other blog posts, but it is time for me to face these memories even when they are not the kind I want to sit with too long.  When last we left this memory, I had called the ambulance and mom had asked me to lie down with her and my one regret was that I didn't stay in the moment more fully.  I repeat that completely because it is easy to forget and I can think of three times in the past week that I was with someone I love but I wasn't WITH someone I love. 
The ambulance came and it was all I could do not to break down then and there.  I was so alone.  I daresay flashing lights make everything more dramatic and mom had her own battle with pain going on and I was scared to death.  I chose riding in the ambulance over bringing my car.  Already life had started to change. My decisions were only living in the now and I couldn't think further ahead than the next minute.  Thankfully, when we got to the hospital she was brought in right away.  Sadly, this led me to believe she would be seen right away which was not the case and her pain soon gave way to a type of moaning that made me frantic to get a doctor.  The problem in the ER is everyone is frantic to get a doctor.  
There are a few things here I would like to stop and mention.  I could not go to the bathroom, nor get something to eat/drink because if I left her there was the chance the doctor would come and I was needed because she was in so much pain she was starting to talk gibberish.  Not one single nurse/doctor/aide offered support for me in that ER.  I was scared, lonely, scared and scared and it would have been nice to have someone say, "Go to the bathroom and take care of you, if a doctor comes we will get you."  It doesn't happen like that in the ER (not where we were anyway) and so I daresay to you that when friends ask what they can do for you, don't be afraid to ask a friend to come give you a bit of a break so that if a doctor comes you don't have to be worried you have missed them for the day!  But, I digress.  At this point is was 3 in the morning and I had not told anyone what was happening except two friends who had already taken on big tasks.  One who had my daughter and was making sure she was okay and got to school and the other who was taking over making my subsitute plans for the day (and eventually 23 days)  so that I didn't have to worry about that on top of my mom.  So before you feel too sorry for me remember that and I will too. In a time of immediate need late at night, one friend took my child and one friend took my job with no questions asked.  The two biggest concerns I would have were off my plate faster than I could say, "please help me." 
Okay, I hate to bring up the anger but here it comes bubbling to the service.  In that stupid ER every single person asked the same damn questions.  Now, I don't need doctor/nurse friends to go off on me. I am sure on some technical level it helps save lives to ask the same questions over and over again.  Really, not even any sarcasm, I am sure there is a reason.  But- when you want action you are ready to take action by ripping a person's throat out when you hear, "and do you smoke?" for the 15th time by a 7th doctor who seems as stunned as you are by the moaning pain.  And I don't remember which doctor finally authorized pain medication but when the nurse came to give it she told my mom what it was and mom immediately said,  "That doesn't work on me."  Now I get it.  The doctor prescribed something and the nurse gives it, but Jesus can we at least pretend to listen to the patient?  So, nurse tells my mom (I can still remember the patronizing tone) that this will, in fact, kick in quickly and she will feel no pain soon.  Guess what?  It didn't and she didn't and then we had to wait a reasonable amount of time before they could give her something else. 
Finally, at about 4 am the heroes arrived.  Oh they were arrogantly wonderful in their assuredness that mom had a pulmonary embolism. They were checking her into the vascular floor and she would be in their care.  I remember thinking, "Doctor, sir, you are younger than me, but if you feel confident you can make my mother well, then by all means do your thing."  I was so frigging exhausted and I just wanted someone to take over.  I have not painted the appropriate picture of how long we sat with her moaning and me not knowing what the hell to do and needing coffee/water and really to go the bathroom.  I needed a savior.  This vascular team seemed to be it and I was not going to ask any questions.  Once they moved, they seemed to move quickly.  They got her to a room changed her medication and then someone new came into my life.  Mary.  Mary the nurse who once mom was settled took one look at me and gave me a dunkin donuts gift card and a pager.  "Go, take care of you.  Mom is going to be just fine now."  I broke down crying and do you know what super nurse did?  She hugged me tight and held on until I let go first.  I prepared myself to make some calls and I left Mary to hold down the fort with mom.  How could I know that the nurse who just saved me was, in just six hours, going to also save my mother? I couldn't, I didn't.  What I did know was that Mary understood familes and understood what I needed right then.  She had taken on two patients and I will never forget her for that.  I walked slowly to the bathroom and to dunkin donuts trying to prolong the call I knew I had to make.  I had considered calling my brother and sister as things were going down but it seemed kind of rude to scare them when they were so far way and there was nothing they could do. I wanted to wait for more information. So now it was 5:30 am and I knew I could call my brother.  I decided to wait on my sister because of the time difference. I didn't want to wake her up, scare her and still have no information other than mom was admitted and they think pulmonary embolism.  I remember hearing my nephew on the line and trying to act normal.  A near impossible task when you haven't slept and are worried sick.  I don't remember much about that phone call with Michael except when he said I will be there between 7 and 7:30.  My big brother was on his way and a burden shared is a burden lifted somewhat.  I made my way to the gift store for a magazine and back to my mom's room where she slept soundly and I napped until Michael arrived.

Bucket List

Recently I was asked,  "How do you stay so positive?"  My first response to that is to giggle to myself.  You see I am my own best friend so I know that I absolutely don't stay positive.  I grumble, complain and vent with the best of them, but, I daresay I do it more privately than others.  I have a few close people who get the vents.  Because I don't want negativity to be what I put out into the world. 
My answer at the time was that I think about every day being my last day.  It seems morbid I know, but I don't wake up and say "OH GOD today I might die."  On the contrary I wake up and say thanks to God for a list of people and events in my life.  The top of the list always involves my family and friends, my health, my job....and then works down from there.  I fight with my family like the best of 'em but I am now old enough to recognize that is life and even with fighting we can appreciate.  I have days I don't want to go into work (sometimes weeks) and yet my gratitude wins out in the long run.  I get depressed, down and in funks, but I was raised to know my funk is not your problem and basically in the long run I know I am able to fake it til I make it.
I often feel like people are searching for a happiness that is just beyond their reach.  Perhaps a new job, a relationship, a different home.   When I feel that way, I ask myself, "is this possible?"  And if it is, I go for it.  That is how I adopted Krista.  That is how I became a teacher.  That is how I started this blog.  That is how I went to my niece's graduation.  I wanted to.  It was possible.  I did it.
I never saw the movie about the bucket list but it became the next big thing.  What is on your bucket list people ask?  Loving with all my soul.  Being Kind (I have to work at this and get better at it everyday)  Being an amazing teacher who touches lives.  (I have years to go before I get there if I ever do)  Being the best mom, wife and friend I can be. 
Don't get me wrong.  Next on my list of goals is another 5k and then a 10k.  I am working on making a job change that will bring me in a new direction.  I am hoping to write a whole book.  But these aren't on my bucket list.  Because if I died today, I died knowing that I always was the best kind of person I could be.  Even when people didn't like that person, I was always giving my all to life. 
Stephen Covey really has it right when he reminds us of our center of control.  We can spend a long time worried, depressed, freaked out about things that are outside of our control.  If it is outside of our control we are pretty much wasting our time.  I think when my mom got sick was when I realized you really can't fix what is out of your control.  I remember her saying she tried to make a deal with Jesus.  Jesus and our priest both told her it was out of her control.  Isn't that wild?  She told Krista that.  I was there.  She said "I asked Jesus if I could stay longer and he said he can't make those kind of deals. He would see."  This was 2 days before she died.  I remember Krista dancing out of the room making us giggle breaking into the song "I am the Lord of the dance said He."  Hers and moms fav church song when they were together.  I remember looking at my mom and her face and being aware that she KNEW that was the last time she would see Krista.  She was drinking her in.
I remember mom telling us she was packing but it all felt too heavy.  She was looking at the different IV machines around her.  I told her she didn't need to take all that only the love and she nodded knowingly.  And so, there goes the bucket list theory for me.  Mom wasn't thinking about all she didn't get to do.  She only wanted to stay longer to enjoy her family more. 
Why am I so positive?  There is a stronger, better answer now.  Because I think in the long run the only thing that matters is living your life appreciating what and who is around you.  I may run a marathon.  I may not.  But now, and also when I die, it just isn't important.  What is important to you?

Growing Up

For today I need to start right where I left off because I am still racing to get through some of this.  When I get to the parts I savor and cherish I will slow down.  First I called some very special friends to come get Krista.  And then I called the ambulance hoping my friends could get there before the ambulance and they did, thank God.   Ambulances can be so dramatic thanks to sirens and lights, but the 2 guys who came were so kind and sweet to my mom that I felt like for a short time I could let my guard down and let someone else be in charge.  I don't remember exact details from that night, but here is what I do remember.  My mom was in groaning agony and it took so long for anyone to do anything about it.  When she told them the painkiller they were about to administer had never touched her pain, they ignored her and gave it to her anyway.  She waited for hours (that is not an exaggeration) for a different painkiller that would actually touch the pain.  Because she was in so much agony, I had to do the talking for her and I must have given the same information and answered the same questions for at least five people.  There has to be a more efficient way.  Also, I learned quickly that you do NOT leave the room of someone who is in the hospital if you want any chance of talking to a doctor.  So, I was without food, drink, bathroom breaks.  Okay, not to make this about me here, but hospitals need some volunteers to help out people who are stuck in rooms.  At one point I tried to go somewhere and because it was the middle of the night, the ER door locked me behind me and I was LOCKED OUT.  I had to go outside and be buzzed back in again.  Could nobody have told me that?  Finally at 3 am, a team of vascular doctors came in with an air of authority.  I would soon discover that you always question the authority of the doctor in front of you, but as yet I did not know this and was happy to turn over the worries to this fine team.  They said they were looking at a pulmonary embolism and that they were getting her to a room.  They would then be monitoring her, and a bunch of other stuff I would not remember later.  It took another hour before she was settled in a room, and then....it took another hour for the order for the painkillers to reach the desk of the floor she was on.  This became a problem I was all to familiar with and with each new floor she arrived at in that hospital, my skin would grow thicker and thicker, as I advocated for getting her pain pills.  The nurses could be your best friend or your worst enemy and thank God most of the nurses in our story were our greatest advocates.  By now it was 5 am and my car was at home as I had ridden in the ambulance.  I had already called a friend at school who assured me she would take care of everything and she did.  Little did she know she would be taking care of everything for quite awhile.  So, now it came down to taking care of me.  Mom was set for the time being.  I had not called my brother or sister because I thought that was unfair until we knew what was happening.  My sister couldn't just hop a flight and get here and what if it was all taken care of in that day?  And I didn't want my brother to get all crazy and try to drive here in the middle of the night.  So, now it was time to make a call.  I remember my nephew answering the phone.  (He would later tell my brother he new something was wrong because I was calling so early.)  I remember telling my brother of the events of the night.  I remember he didn't think twice and said he would be there soon.  I remembering being so thankful that someone else was going to come share the burden with me.   I remember being tired, but what I don't remember is sleeping.  The next hours would be sitting by mom's bedside praying for mom to return.  Her agony was such that she was either sleeping from pain pills or groaning in pain.  Before my brother got there I was not convinced she would live through the day. But, there had still been no doctor to tell us any more than what I knew in the ER.  They were monitoring a pulmonary embolism.  It would not be until about 7 pm when she would be brought to Intensive Care, that we would know how wrong that diagnosis was. 
So, why do I share all this? Many reasons. It is good for me to sift these memories and share them.  I want others to be prepared for a loved one entering the hospital for extended periods of time.  People who love my mom dearly never really got to hear what the last few months were like and I want them to be able to know.  In fact, some of them have asked recently and I want to honor that.  But mostly, I just feel the need to write it down because this is the story of how I grew up.

Regrets

Sometimes I lie.  There, said it. Done.  I lie because I believe in fake it til you make it.  So, sometimes if you ask me how I am and I say great.  I might be holding back a bit.  And then, if you ask me if there is anything in my life I regret...I already know my ready answer...if I changed anything about what has happened in my past, I would not be who I am today.  That part is true.  But, there is one thing I would definitely change.  And this is one of those memories that could bring me to that fetal position I am always mentioning, so forgive me if this post seems like a racer is writing it instead of a writer.  It feels like if I race through the memory I won't have to sit with it for quite so long.  Why share it then?  That will become clear as I finish the memory.
Mom had moved to Shrewsbury with me in April of 2007.  We bought a house with an in-law apartment attached.  The deal was that I was going to help her go through her changes as she got older and she was going to help me with her granddaughter.  From April to September we had some great times.  But in the interest of being really honest, we also had times we wanted to strangle each other.  That is family for you!  Mostly I remember dinners on the deck and going into her apartment at 7 am to tell her daycare was now open.  That meant I was leaving and it was on mom to get Krista ready for her day and on the bus.  She was so good at it that they played games together before going out to the bus.  I also remember coming home on beautiful days and smelling the afternoon coffee she had just made for us.  It really wasn't like we lived separately.  The door separating us was open most of the time!
Then she went to VT for a weekend in September.  She had the time of her life seeing her old friends and I loved how happy she was upon her return on Sunday.  That Monday she called me at work and told me she would not be able to meet Krista off the bus.  She mentioned her leg had been hurting her for some time and the pain was at the point where she needed to see the doctor.  It is so funny how that call should have sparked worry, but didn't and it was my now husband who asked, "should you be driving her?"  I called her to ask and she said not at all and I went about my regular day.
When she got out of her car after the doctor I could see she was not happy.  They believed it was a clot and ran some tests that would have results the next day.  We invited mom to dinner on the deck but she chose take out instead  (Krista delivered the burger up to her)  and I remember her on the computer saying, "I am going to diagnose myself."  My husband (who wasn't my husband at the time) was there for quite awhile with us that night.  The pain got so bad for mom that she could not walk across the room even with help.  We wondered if we should take her to the hospital while someone was there to watch Krista.  Mom did not want that and so he left. 
As the night went on, the pain got worse even as she was just sitting there.  I begged her to let me take her to the hospital.  She only wanted help getting to bed.  Once we got her across the room and into bed she knew it was so bad she needed to go to the hospital.  She said I could call the doctor but that she wanted something from me first.  I will never forget the whole scene and the sound of her voice when she said, "just lie down next to me for awhile."  And I did, but I wish when I did I had stopped my brain.  I wish I had rubbed her back or held her hand or anything to just be in that moment more carefully and fully.  All I could think about was getting her to the hospital.  I didn't stay fully and I didn't stay long enough and that is the single regret I have in my life.  I am sure I made tons of mistakes in those months she was sick.  I am sure I could have said better things, acted better, push doctors more as my sister did so readily.  But if I could go back and change one thing, I would go back to that night and I would lie there quietly beside her until she said she was ready for me to call the ambulance. 
Why share it?  Because we can learn from other's regrets.  I hope that the next time somebody says to you,  "just be with me."  You can do it fully and you never have to look back and wish you had truly fulfilled that request. 

Good News

On the days I am feeling mentally strong enough, I sift through the memories of mom after she got sick.  Truthfully, in those months there were some amazing moments where we laughed until we cried and we continued to plan the future.  But, when those moments take place in a hospital room the memories become a soul land mine for things that make you want to curl up in a fetal position and cry for days on end.  You have to be strong enough so you can see the memory and jump over it without falling into it.  On days I feel really strong I jump into those kinds of memories because they say that will help me heal.   I submit:  who the hell are they?  and I am thinking THEY are not very smart.  But I digress.
I wish I had kept a journal of those months.  What days she said things that were so insightful.  Because I know now that had I been listening closely enough, she was spending weeks preparing me for her death.  She knew long before I did (or maybe she just accepted it long before I did) and I regret I did not open up a conversation at any of those times when she gave clues about what I was in for.

So, cut to the rehabilitation center at a time when we actually thought she was coming out of this okay.  She was sitting  up in bed when I came to visit after school and it was one of our better visits.  Then she mentioned slowly,  "I had a dream about your dad last night."
Short side note:  My dad died in 1997 and at that time my parents had been divorced for many years.  Their relationship had mellowed into one of the love that comes from the bond of a family.  After my dad died my mom told me that sometimes they would call each other up and just talk about how proud they were of each of us.  That kind of thing stays in your heart forever.
I was dying to hear what happened in this dream with my dad, but it was short and sweet.  She said he was in the kitchen and she said, "John what are you doing here?"  He looked at her and said,  "Pat, I am not here for you, I am here for the kids." 
If I am really honest with myself about that memory I did know what it meant.  I also knew she was opening up a conversation.  But- I wasn't ready for that conversation.  And truthfully, it is hard to talk about death when the person you love appears to be getting better.  The one thing I never questioned was that my dad was now with us as we took this journey.  I always knew that wasn't a dream, as such, that was an actual conversation and so my dad stayed close because the time we had entered was going to be the most difficult of my life.
Another side note:  The reason I selfishly keep saying "My life"  instead of ours when this journey so closely involved my brother and sister is because I do not want to speak for them.  I can assume it was also the hardest time of their lives, but their journey was specific to them and my journey is specific to me.  Know that this journey was fully traveled with my entire family, but that I cannot tell you what their journey was like.
I wish there was an easy way to end this blog post.  There isn't.  There is no magic sentence that wraps it up neatly like a beautiful package.  Death isn't like that.  It is full of every emotion you have ever experienced and some new ones thrown in there.  I guess I will leave you with good news.  Having polished off this small memory, I am still standing.

The Proof

I have been sitting here for over half of an hour with no words coming to my mind.  I read over old posts and thought to myself, "Wait, I thought that was so good when I wrote it."  I am not sure what kind of train my soul is on today, but it is certainly not allowing me to feel like any kind of writer this morning.  Perhaps I need more coffee, maybe it just isn't in me today, or maybe I need to remind myself what it is like to give a little of my soul to my writing everyday.
I would like to share my cousin, Cyndi with you.  Cyndi has an amazing soul and is connected to my mom after death in what I see as a similar way to me.  In fact, when my mom was dying Cyndi had a dream that my mom came to her and said she was closing the shop.  I don't remember all of the details but I DO remember how that dream helped calm my spirit.  Well, recently Cyndi sent me an email (Oops, and I don't have her permission to share it, but I think she will continue to love me anyway.) that she felt she needed to tell me something.  Apparently,  not realizing that I believe in any and all signs from people we love who have died, she thought I might think she was crazy but she felt strongly enough that she was supposed to tell me that she did.  (I am going to ignore that huge run on sentence and I hope my reader can too. Thanks)
So, Cyndi was at home and the smell of Eucalyptus came over her.  She told me she always associated that smell with my mom and that she felt mom wanted her to hug me and say that she (mom) was proud of me.  Now, I will tell you that Cyndi probably knows more than anyone about things that are happening in my life right now...huge changes I am making to make myself a better person.  But really, these changes are coming from deep within and are very personal.  I have talked with my mom about them in my heart at night and all throughout the day.  I have felt her as a listener, but I have not felt her respond in any way and so this message from Cyndi was huge.  I knew the changes were recognized and mom felt good about them.  But- as we often do with signs that make us feel good, after awhile we doubt them.  I have never associated my mom with Eucalyptus and so came to the conclusion after a few days that the message was for Cyndi, not me.  It all centered on that Eucalyptus.  Why would mom give a message through something I didn't associate with her?  I didn't want to hurt Cyndi's feelings, but I thought maybe she had given the message to the wrong person.  Maybe it was for my sister or brother who would say, "Eucalyptus, yes, that was always associated with mom for me."  Needless to say Eucalyptus was quite on the brain after that message from Cyndi.
Cut to Holy Week.  One of my hardest weeks since mom died.  I miss going to mass with her so much and especially on Holy Week.  We always had amazing talks about our faith on that week.  This year we went to my in-laws for Easter.  About five minutes after we walked in the door my father in-law lit a candle and asked me to smell it.  He wanted to know if I liked the smell.  It was very subtle and not looking at the label, I asked, "what is it?"  I am sure the wise reader already knows the answer to that.  It was Eucalyptus.  On the label was a picture of Eucalyptus and I thought, "wait, I recognize Eucalyptus." 
What was the message on Easter day? I think it was this, "Have no doubts, Jennifer.  The message was for you.  Cyndi got it exactly right."  And I can't help hearing one last thing from mom's mouth.  "Here, I'll prove it."

I don't hate my dad.  A funny way to get back into "My Morning Coffee" to be sure, but I had to say it.  You see my husband read some of my "dad" posts.  And now he believes I hated my dad.  Which makes me think I am not a very good writer at all because nothing could be further from the truth.  If I had hated, or now hated my dad I would not have anything to write about him.  I loved and continue to love that man with great strength of soul.  But that doesn't change the fact that the relationship with my dad was one of the hardest relationships I have ever been involved in. 
You know we do this thing to ourselves (maybe it is just me, but I think its others too) where we think our relationship with family members should be the easiest ones we have.  On the contrary, we don't let go of family when things get tough.  We learn and we grow and we hurt each other a lot in the process.  God, when I think of the hurt I have given my family I am amazed by the fact they still speak to me.  But that is what family is and that is what family does and I daresay family is the first place we learn to forgive. 
I think dad would be the first to admit he did some shitty things to his family.  He would also be the first to admit he was wrong.  My choice is to hold onto the shit for as long as possible until I can't stand the stink anymore....or to blend the shit with the good soil (and there is good soil buried underneath) until the smell is one of rebirth and springtime.
I choose spring.  I choose love.  I choose apology.  I choose family.

The customers

This memory has been done.  For some reason it has always bothered me that this memory was shared in Chicken Soup for the Soul book years after it happened to me.  Or, at least I read it years after.  I am not sure why that seemed to make my memory null and void, but recently I realized that if the world is the way we want it to be, this memory is being made all over the world everyday.

It was after the lunch rush at the Mexican restaurant I worked at in Burlington, Vermont.  Tortilla Flat for those who can, and want to picture the place.  The bartender, cook and myself sat talking at the bar waiting for the next shift to come set us free when we heard the creak of the front door and two kids came in.  I didn't move at first thinking they were probably stopping on a bike ride to use the bathroom.  But they waited there and so I went to greet them.

I prided myself on treating all customers the same so I seated them, gave them a bowl of chips and salsa, and because they had dirty clothes and dirty faces I gave them water without them asking.  One was definitely the elder and although I don't remember if they told me, I knew they were brothers.  I walked by a few times and the menus were still open and they were counting coins.  Finally, I stopped and asked if they had any questions.  They asked some questions about the tax if they bought certain things and I realized they were really struggling to find something they could afford.  They ordered one cup of chili and one cup of vanilla ice cream to share between the two of them.  

Scott in the kitchen was as happy as I was to give these customers a little bit more without totally hurting their pride.  So, the cup of chili became a bowl of chili.  They both ate it very quickly.  The cup of ice cream became to small sundaes.  The older brother asked when I left it if that is what he ordered and I really didn't want him to feel like charity.  I knew by his manners so far that he was old enough and proud enough for that to hurt, so I told him I had just split the cup so each brother could have his own.  Then I quietly left the bill and thanked them for coming.  They thanked me back.

When I saw them walk out the door I went to bus the table and immediately began to tear up.  It was clear to me by the 35 cents left behind that when they were counting, checking prices, and asking about tax they were busy figuring the bill and also my tip.  I have never forgotten that tip.  It was more than money.  It was the promise that the world would be okay. 

The only regret I have about that day and those boys is that I couldn't meet their parents.  To tell them I was honored to be a part of a world where a family like theirs also existed.  Human beings have the power to be so amazing.  And yes, I believe the world will be okay.

We interrupt this blog post...

Forty has earned me some privileges.  The best one I have taken advantage of is looking back over my life with smiles and tears and not one single regret, because I love who I am right now.  Everyday I wake up with a new memory I want to write about, but forty has also earned me the privilege, or the honor really, of realizing-  I do not need to speed to enjoy life and get it all done, rather I need to savor. 
So, that is it for today.  I have some interesting memories ready to be shared, but I need time to savor these memories quietly for awhile.  All the time you savor you are still making more memories.  The world is an amazing place!

Enjoy.

For a little while...

When I was first thinking about adoption I spoke and listened to a lot of people about the pros and cons of building a family this way. One of the major things that worried me was that the child might have such anger issues that we would not be able to build a relationship.  I knew I was going to try to adopt a child who was five to ten years old.  As a single parent I did not want a new child coming in and needing to go to daycare right away so a school age child was going to have a better transition to my life.  Yet, the research told me that the older the child, the more anger issues he/she may have.
The second thing that worried me was the idea that a child might live with me for  a short time and then be sent back with her biological parents.  The idea that I would fall in love with MY child and then have to send her back to a place she had been taken from because they weren't doing their job in the beginning just made me heartbroken.
I got over the first concern by taking the DCF class which is a ten week mandatory class for anyone who wants to foster/adopt through social services.  I knew there would be lots of support for myself and my child and that we would get through the anger.  It stopped scaring me about the second week of class and I knew I would be fine.  But the other worry loomed large and DCF could do nothing to make any of us in that class feel better about things.  Yes, if you tried to adopt a child who was not legally free for adoption  (legally free means parents rights have been terminated and they cannot fight for their child back) there was a chance you could lost your child back to the biological parents. 
This awful news almost stopped me from starting my family.  I tried to picture it every way that I could and however I could I did not see myself handing back my child.  I even pictured us crossing the border and starting a different life to avoid losing her.
I told my friend Nancy I was not sure I could adopt because of this looming issue.  It felt too big for me.  It would be too much and I did not want to bring that kind of heartbreak into my life.  Nancy did not even take a second to think about it before she said, "Jen, all relationships are temporary."  These were the words that changed how I felt about going for adoption but also how I felt about life.  We are not guaranteed anyone in our lives forever.  We are not even guaranteed the next day.  We need to give all that we can in our relationships right this moment because the next moment is never guaranteed even when a child is born from our own bodies.  We have almost no control over when people leave our lives, but we have control over how we treat them while they are with us.  After that I went forward fully and never looked back.  I decided I would love my child forever and I would be with her physically for whatever time I was allowed.  It was my best decision ever.

There is a footnote to this story though.  When I told my mom what Nancy said, my mom disagreed slightly.  Thank God she did and that we had that conversation because I think of it often.  Mom told me that she believed all physical relationships are temporary but death does not mean an end to a relationship, only a change.  Think about that.  "Death does not mean an end to a relationship, only a change."   Beautifully put mom, beautifully put.

Tell Them

Recently I had reason to be at the hospital where my mom died.  It is an amazingly beautiful place and for a few weeks after her death I would go there and walk around and sometimes even buy a coffee at the Dunkin Donuts in the atrium. 

When I went back this time though, something had changed.  It no longer brought the feelings of comfort it had brought when my mom was a patient there.  In those days I would walk to the food court or the gift shop knowing I was going back to the one woman who loved me the most.  Oh sure, we had anger at some of the doctors and, of course, ultimately we wanted her home with us, but for quite some time that building was the cocoon that kept my family together and safe.  Most of the nurses kept us sane and let us feel the comfort of others without having to step outside the hospital doors.

It was the same with the house I sold in June.  Without my mom there it didn't feel like the home we had started to create together.  It was a lovely house to be sure, but my mom was not there and it felt more like house than home.

Recently, I was quite sick and spent the day in bed.  When I asked my husband why my dad had not been to visit and then cried about it he knew I must be dehydrated as my dad has been dead since 1997.  However, the fact remains that I know I spent several hours with my mom that day.  We both sat on lawn chairs on the grass overlooking a beautiful river where people were laughing and jumping in.  Sure- it could be due to the dehydration, yet even though I don't remember the conversation, I do remember the feeling.  It was a wonderful feeling to be with her. 

The feeling....that is what it is.  The feeling our loved ones give us that makes our hearts overflow with happiness.  It isn't about the building you are in together or even the things you do together (although  those things can bring about nice traditions).  It is about sitting and reading quietly next to your husband and daughter.  It is about laughing hysterically with your sister.  It is about sitting in front of the fire saying absolutely nothing with your brother and his entire family and being absolutely okay with it.

So often it is when absolutely nothing is going on, that I look around and thank God for the joy that is my family and my life.  Who are you thankful for?  What feeling do you get when they are with you?  Do they know this?  Tell them.  Everyday is a new chance to tell them.

My Resolution

I left the social media train this vacation!  That's right.  I willingly stopped checking facebook statuses to see what friends were up to.  I did not go on twitter to see what Brad Keselowski had updated.  I didn't even check my personal email more than a couple times yesterday to catch up.  In the name of honesty, I did go on once to wish someone a happy birthday yesterday, but that was all. 
I did this because it had been mentioned to me that when I get on the computer I am very hard to talk with and I seem to be on the computer a lot more lately.  I did this to spend more quality time with my family.  Quite honestly I also did this as a test to see if I am addicted to facebook.  Good News!  I am not.  I left my computer behind at our apartment for the entire vacation and there was not one time that I wondered what status updates I was missing.  In fact, at times I may have otherwise been on facebook, I was often curled on somebody's couch  (we traveled three different places this vacation) watching a "rip snorter" of a fire.  That is what mom called a good fire! 

I felt really connected to my family and the people I was with.  I should add that my cell phone stayed off most of the time.  My cell is not a computer, but I do tend to text full conversations with people and this can also take me from my family. 

I do not want to give up facebook completely.  There is too much benefit in bringing me closer to friends I otherwise would not be communicating with and my family that I don't get to see because of distance.  However, I now realize that social media can greatly send you into emotions just as the news can.  I am pretty sure that today a bunch of my social network friends are either lamenting that vacation went too fast and they have to go back to work today, or are strongly positive about starting back up again today.  I am sure tonight I will enjoy lots of great holiday pictures people have posted! 

But- the thing is- it was so great being with my family and laughing in person!  It was great to say hello and goodbye and have real hugs and happiness in between.  It was amazing to just be in the moment without a computer screen or texting screen in front of me.  

So- here it is- my resolution for 2012.  I will give the people in front of me live as much of me as possible.  I will be on the computer less and texting less when I am home with my peeps.  I will fully commit to each moment with my friends and family because I don't want to miss a thing this year! 
Happy 2012 to all my friends and family!  

An Open Letter to My girls

Often when I write on a topic I wonder to myself, "What makes me think I am an expert on this or that people will care what I have to say about it?"  But since turning forty I believe I have earned a certain amount of "wisdom credits" and I am ready to impart some of that wisdom to those I love who are much younger and often go through the pain I have gone through in my past.  And so, today, I want to write about males who break our hearts. 
There is so much truth to the following:  "We cannot always control what happens to us, but we can control our reactions to what happens to us."  It is with this quote in mind that I remind you of the following story and how I felt for years after it happened to me and I how I feel now looking back on what happened to me. 
When I was in my late 20s I fell in love.  It was not the first time I had been in love, but it was the first time I knew the love was going to be forever.  He and I discussed marriage and made plans for our future.  I still remember the night he called and said he was too tired to drive to my place after work, but five minutes later he called and left this message.  "I thought I just wanted to go home because I was tired and then I realized that home was wherever you are so I am on my way."
Everything about that relationship felt so right -like finding the missing piece to a puzzle you have been working on for years.  As you know, that was not my first serious relationship, nor was it my longest.  I had even lived with someone before that so I had plenty of experience with relationships and the feelings associated with "Is this the real thing?"  "Is this the one?"
But then things started to change and like many young women the more he pulled away the more I tried to pull him back.  It started with his new job and colleagues.  He began to spend less time with me and more time with them.  I pride myself on saying whats on my mind so that the man in my life doesn't have to guess and I asked him about it.  He clarified that it was true and not in my imagination, but that it was nothing to worry about because he needed to get to know his new colleagues.  Next came a night at work that he told me he had worked with a female colleague until 3 a.m. on a big project.  Looking back I guess he thought that was enough of a signal to me, but why would I question it?  He told me she was nice.  I didn't realize I was supposed to understand he was falling for her.  The next situation was calling him and not getting him for an entire weekend night.  The next day he said he had gone to a pink floyd laser light show with some friends but hadn't told me because he knew I would be jealous that I couldn't go.  Now at this point, things are weird.  He is not acting like himself and I am not understanding why.  I should have understood why, but I did not.  The final straw came when I went to a work party with him.  Some friends of the "3 a.m. colleague"  came to me and told me what  a "cool girlfriend" I was for letting him stay overnight at their apartment.  When I asked him about it at the party he said I must have forgotten and that of course he had told me about it. 
Reading this through you can probably predict the ending before I did at that time.  I broke up with him by phone and he didn't stop me because that is what he wanted.  Within that year he became engaged to that 3 a.m. colleague and the last I knew (years ago) they were married and had some children. 
I was bitter for about ten years.  Really.  Isn't that awful?  I was so angry at how much he took my trust and crumpled it up and threw it back in my face.  I was so angry that he didn't have the balls to tell me he had found somebody else and I had to do the break up.   Luckily I got over the bitterness BEFORE meeting my current husband.  And so, here is what I know.  I thought he taught me never to trust again, but what I know now is he taught me something much more valuable.  He taught me to trust myself, to trust what I am thinking, to lean on myself and know that I am smarter than I give myself credit for.
To my girls- you are going to fall in love and think it is real and you ARE going to get your heart broken.  But each time that happens your heart comes back better and stronger.  When someone starts to pull away, let them go.  It hurts like hell but it is better than the hell you will be in if you stay with someone who doesn't love you.  I do not regret ANY of my past relationships because they helped me become who I am today.  Who I am today is a strong, imaginative, trusting, joyful person who trusts myself enough to love with all my heart. 
"We cannot always control what happens to us, but we can control how we react to what happens to us." 
Be Strong.