Remember what you forget...

I remember one night just after Connor was born James worked late and I hung out with my mom at her house much longer than usual. As my mom walked me out to the car with the baby she looked into the sky and commented that the lack of the moon made the night truly dark. She started back to the house saying over her shoulder that she wanted to get her keys because she just knew I hadn't turned on my outside light and she would bet money on the street light in front of my house being out again. She drove behind me the few miles to my house and we both laughed at the broken street lamp when we pulled into the drive. My mom carried Connor to the house while I gathered our gear and headed after her. I expected her to turn to leave once we were settled but she sat down and commented on how much she liked the new leather recliners I had purchased. We talked until James came home well after midnight and to this day I wonder how my mom knew that I was overwhelmed with the thought of being alone in the darkness with my new baby. I asked her what it was that I said or did that let her know about that slight panic I was feeling and she said there was nothing, just a feeling she felt. Now, with her gone, I come back to that simple statement. Just a feeling she felt, like a connection between us with no words to get in the way and sometimes late at night I lay awake groping for that feeling, that connection because I miss her so. She is still my very best friend...

Dan misses her more than I thought possible, watching him is almost physically painful. He believes that a mistake was made, that he was "expendable" where my mother was not. I remind him that he too has 4 daughters and 3 grandchildren just as my mom, but I know he feels that she should be here. Each of us girls needs Dan, he is our family and we cannot move forward without him. He has been ill these last few weeks and when he could no longer walk easily, he allowed Chris to take him to the emergency room where he was admitted with a blood infection. The doctors started running tests and came back to let us know that they did not know what type of infection was running through his blood. It was causing inflammation and every joint in his body ached, angry, red nodes appeared on his arms, neck and feet, the inside of his mouth was covered with ulcers. The doctors started consulting specialists outside of the hospital and my mom's medical records were pulled to see if it could have been a form of the hospital-acquired infection she had suffered. Needless to say the fear was sickening, I worried that Dan would follow my mom home when I needed him here. Catscans, MRIs, bloodwork and cultures were done and gave precious little light on the situation and we waited just as we had done with my mom. It made me angry to be in that place again, to feel useless and helpless. When my mom passed I promised myself that I would never watch someone I loved go through the endless waiting that comes with an unidentified cause of illness. I told myself that I would demand answers and get the right doctors but there I was again without a clue as to the next step. I know that finding the cause of my mom's symptoms sooner would not have changed the outcome of her life but it would have eliminated the fear I know she felt when a doctor, a figure you put all your faith into, just does not know how to help you. After 3 days in the hospital and weeks of painful suffering doctors found an antibiotic that worked to kill the infection in Dan's blood and we waited for him to be discharged later in the week. Of course, being who he is, Dan was home the very same day that the hospital pharmacy gave him samples of the oral antibiotic. He said he had signed himself out of the hospital which I know is certainly an option you have, but in my experience they tend to remove your IV before you leave! Basically, Dan told the nurses that he was going downstairs in the wheelchair they supplied so that he could smoke a cigarette and then never returned. I called to scream at him to go back but I felt horrible when he told me he had been in hospitals enough this year and didn't want to stay alone in a room that was 2 doors down from the one where my mom had battled the early stages of PML months before. We all have our demons.

Later, when Dana and I talked about things she shared a conversation she had with Dan's brother, David. She told him that she was trying to handle all of this upset alone because she had no one since my mom had passed. I realized when she said that to me that I should reassure her that I was always here for her but she knows that and I understand what she meant because I feel the same. Each of us girls knows that our sisters are there for us for anything we need, I talk to my aunt almost everyday as we both struggle with the loss, my cousin and I sighed when we came to the conclusion together that each of us had become our mothers and then smiled when we realized you couldn't ask for better, we are all there for each other but in a strange way we are all very much alone in our grief.

My friend Jill recently resigned from her position within our company and has moved on to a new opportunity in her career. Although I am happy for her, I will miss our daily chats and laughter and the bouts of bitching and complaining that coworkers always seem to manage. My husband believes this works to my advantage as he says that although I am a very animated storyteller I am an exceptional writer. Both Jill and Annemarie, another coworker who left the company circle, have been bombarded with the email version of my life since they left. And, as always, putting the pain and frustration down on paper helps almost as much as their emailed responses. I am glad that I had the opportunity to get to know each of them better this passed year. It is funny to think that I have known both of them for numerous years but for some reason events this year seemed to line up and form a stronger bond than was there before. I am eternally grateful for the advice they offered and the strength and support they gave. Their friendship is another item in my list that I use to remind myself that I have things to be thankful for; I think you tend to forget the simple things when you are grieving. I received an email from Annemarie today in which she was simply checking in to see how I was doing. It was such a nice and simple thing that it made my eyes well up. In it she discussed various logistics of attendance to Jill's wedding including travel and lack of spousal assistance but when she asked my opinion on a wardrobe question that was when the tears started to fall, for only a true friend would ask me what I thought about style or fashion. Seriously, I have a good amount of self-esteem and I am pretty comfortable in my own skin, but I have to admit that every day of my life includes at least one fashion faux pas; I wear pajamas bottoms to work and pretend their not, I never paint my toenails when wearing sandals, white after Labor Day is a slogan for me, I don't own make-up and I really believed that fanny packs were a good idea! So, I must say I do love Annemarie!

A card came in the mail the other day from Jill, the combination of the card's own verse and Jill's handwritten note on the inside cover were heartwarming. Reading the card made me realize something I had always felt throughout my life but never actually acknowledged; people consider me a good friend to have. All the wonderful words of friendship in that card from Jill are how I feel about her but for some strange reason I never thought she would feel the same for me. I don't think I am a horrible person or anything and I do have a pretty good sense of humor and outlook on life but I never considered my own value as a friend. I guess that is another item on my list, having friends is nice but being one is truly wonderful.

A week in the life...

This week has been a long one with a million little things going wrong. They are just the trivial little occurences in life that normally you would take in stride if you were hit with just one at a time but when the occur in a short time it is almost enough to send you over the edge. Today is my edge.

The weekend was really wonderful and I should have known by late Sunday night when all was well that it wouldn't hold. I spent Saturday afternoon at a friend's baby shower with Dana and had a wondergul time. Sarah is pregnant with twin girls and is beside herself with the excitement, her family is as welcoming as they are funny and her niece is as cute as they come with her little pony tails and happy smile. The whole event was fun and relaxing with good food and none of those cheesy baby shower games. Sunday I spent the afternoon at Dana's house where we had a barbecue to celebrate the Labor Day holiday. Dana makes the best potato salad ever and stole a really delicious pulled pork recipe from my cousin Donna. I sat on the patio with Dan, Dana and Chris and we talked and laughed, it wasn't the laughter we shared when my mom was alive but it was laughter all the same. That empty space that is so intense whenever you are there at the house where my mom lived was still there but for some reason it didn't seem so empty. We talked about my mom and let our eyes fill as we missed her but we smiled about her and remembered her smiling about us. That is something we haven't done in a long time. That feeling of smiling when I think of my mom is gone now but I was so thrilled to have it that Sunday afternoon even if it was only for a few brief moments.

Monday swooped in to eliminate any bit of relief that the weekend brought and each day got a little worse as the week went on. Connor started kindergarten last week but with the holidays and teacher workshop he was scheduled to go to school one day last week and one day this week and Monday was not his day. If I wanted to send him to Cadence's daycare for the day it costs $75 that I just don't have. James is already working over 60 hours a week trying to get us out of the hole we put ourselves into during my mom's illness and the costs after she passed and I just couldn't bear to add another expense. I made arrangements to bring Connor to work with me after I dropped Cadence at daycare as we have to pay her daycare fee whether she is there or not I figured one child at work would be manageable. Cadence cried when I dropped her off because she wanted to stay with Connor but I managed to calm her somewhat before I left. I put in 9 hours at work that day in between entertaining Connor before I would finally get back to pick her up. Dinner was a sad affair of mac and cheese and the kids were in bed by 7:30pm and I managed to fall asleep sometime after 2:30am and still make my alarm's 5:30am wake-up call.

Tuesday brought another teary good-bye from Cadence but she was easily distracted with the idea that today was her turn for Show and Tell at daycare. Connor was dragged along to my office with a tote filled with Play Doh and its various accessories. He is pretty well behaved at the office but I work with medical writers and editors and for the most part it is pretty quiet work and bored 5 year olds tend to have a bit more volume. My co-workers are extremely supportive and do what they can to help me out. Connie is part of our graphic design team. She lost her husband a few years back after he battled a brain tumor and her outlook and understanding are wonderful. She set Connor up on a website where you can create your own snowflakes and then took time from her schedule to help him cut out each intricate flake. occupying him for 2 hours or so. Connor is also very much in love with my friend and co-worker, Jill who takes up residency in the office next to mine. He spends a lot of his time making her little paper hearts and various other creations and then visits with her when he delivers them. Jill is extremely good at her job and was raised with the ethics that do not allow her to turn away from any chore while stating that it is not her job, making her a very busy person in the office. Despite her workload she always takes the time to accept Connor's gifts and chat with him for a bit and I truly appreciate that. Later in the afternoon I received a call from my sister Chris asking me for the name of the grief counselor I knew at the hospice that cared for my mom. It turns out that my niece had an episode in school and told her teachers that she really wanted her grandmom back. It took them about 90 minutes to stem the flow of tears and Chris thought it best that she talk to someone as she had never let on to the grief she was holding. Each time Chris tries to speak to her about it she gets angry and will not answer her. Bonnie has lived with my mom just about all of her life and has lost her just a few months after her parents divorce. Although my sister and her husband have done all they could to make the transition smooth and friendly Bonnie is no dummy and change is not her favorite thing. Tuesday evening, Jill took Connor and Cadence home with her to make their own pizzas for dinner so that I could attend Back-to-School night at Connor's elementary school. The event was really great and I enjoyed hearing what Connor would be learning in school and being introduced to the people he would spend his days with. I spoke to some of the other mom's and even joined the PTO against my better judgement simply because I found the president of the organization very likeable, Connor's teacher spoke a bit over the scheduled 30 minutes and I was reluctant to miss any of the information she plied on us. As I left the school I hurried to Jill's house to pick up the kids, worrying that it was passed their bedtime and afraid they had drived Jill over that edge where I hang out most days! My luck being what it is, there was an accident about 2 minutes form her home that left me stranded in traffic when I called to let her know I was running late. I could see the entrance to her development from where I sat and decided that if I just got out of my car and explained to the officer handling the road closure that I simply had to turn there he would certainly understand. After telling me to return to my car twice and warning me that he could arrest me he realized I wasn't giving up and allowed be to sneak by the scene on the shoulder, I was afraid to pull out my cell phone and call Jill for fear he would certainly arrest me at that point.

Wednesday was going to be an easy day. I dropped Cadence at daycare on my way to the office and James would take Connor to school that morning for his first day of kindergarten and after he would be bussed to the after-care program. The first phone call came at 12:20pm from the secretary at Connor's elementary school. She wanted to confirm with me that Connor was indeed going to the after-care program as they had never sent a bus to pick him up. She assured me Connor was fine and said she would call and get things straight and when she called back again 15 minutes later, all was well, supposedly. I finished out the work day with the nagging image of my little guy sitting alone in the school office, holding on to a backpack that is bigger than he is and waiting on the bus that didn't come. I picked up Cadence and she was thrilled to go with me to "Connor's new school" and pick him up.

We arrived at Connor's after care school at 5:00pm and I made my was to the cafeteria where the program was set up. It seemed like they had done a really nice job; there were large section rugs placed on the tiled floors where groups of kids built with blocks and cafeteria tables housed kids playing board games and coloring. It was a nice, comfortable atmosphere and I was glad we had chose this for Connor. The only problem with the after care program was that as I scanned the area I realized that Connor just was not there. That's right, after 45 minutes of phone calls on the part of the program's aids and an almost total meltdown on my part it was discovered that Connor had been put on the wrong list and bussed to the wrong facility. He was in good hands but just not the right hands! The relief came flooding over me as I drove to the other school to get him and I even managed to see some of the humor in the scene Cadence and I had created. Between me asking how this could have happened and Cadence standing beside me, hands on her hips using her best demanding tone saying "Did you lose my brother? Did you put him on the wrong bus?" I am sure we were a sight! I picked Connor up at the other facility and he didn't even realize that he had been lost so all was well. I just couldn't stop that one horrible thought that crushed me, "if my mom were alive this wouldn't have happened, Connor would have been with her"

After our lovely mid-week adventure I figured Thursday would have to come and go without incidence, right? Not exactly...

Schools were closed for the holiday on Thursday and Friday so Connor packed up his Play-Doh and came to hang out at the office with Jill and I. After wrapping up a teleconference I checked the messages on my cell phone and discovered several from James. He doesn't usually call in the morning so my heart was beating a little faster as I called into my voicemail. James message explained that there was a rather large puddle oil on my side of the driveway and he was concerned. I went out to check my car in the parking lot and sure enough there was a good size oil spill beneath it. This finding led to a phone call to the dealership where I had just had my oil changed over the weekend. The car had to be towed as there was no oil measuring on the dipstick when it was checked and I had to have Enterprise "pick me up" The dealership did pay for the rental for 2 days as they checked out my vehicle and Cadence was totally convinced that the black Chevy HHR rental we received was considerably less lame than our silver minivan. The tantrum that ensued when our car was returned was not fun!

I worked from home on Friday simply because I was afraid to leave the damn house! I managed to break 2 dishes and burn a microwave dinner but I considered that a pretty good day.

I know these would have happened regardless of whether or not my mom were here but when things don't go well that thought always surfaces, "if my mom were alive this wouldn't have happened." I know it is not true but I know things are definitely easier when your mom is there to lead the way. Weeks like this one make me miss little things about my mom that I didn't consciously notice while she was here. I miss the way she would simply drop whatever she was holding if she saw one of the kids running to hug her, or the way she said "See ya later, Hots!" to my niece each time she left for school. Most of all I miss the feeling of simply walking beside her knowing she was there without having to look over. I miss letting the kids fall asleep in the backseat and then parking and watching traffic go by as we ate drive-thru burgers. In all honesty, I miss everything about her, even the sentences that started "If you want my opinion..." even when she knew I didn't. Some of the anger over her death has left me but occassionally I still feel it. I am not sure yet if the dull ache that sits in place of the anger is any better. I keep wondering if the feeling of living your life half-empty will ever go away, will I smile again without having to think about it first? And what do with the guilt; the guilt over the fact that it hurts my face to smile or the guilt over how my children are affected by a mother who selfishly wallows in misery on occassion. I guess, chances are I will never know. My mom is proof that you are gone before you ever get the chance to figure it all out. I am glad she lived in the moment, of every moment and now for another step forward as I try to do the same.

My mother's daughter...

Tomorrow my son will be five years old. I made arrangements for his party at a karate school near my work, it is my first official birthday party. Usually we just have cake and ice cream with the family but parties like that seem to emphasize the fact that my mom is missing. I shopped for Connor's gift and party favors alone one Friday afternoon while the kids were still in daycare. I ordered the food and cake without my mom and realized that this is how my life will be moving forward. I keep telling myself that I am upset because my mom is missing all this, she is not here to see her only grandson turn 5 and she would have loved it so! In those moments when I am truly honest with myself I admit that I am more devastated over the fact that I don't get to see my mom seeing Connor turn 5. I have lost something so wonderful and most of the time I try to be thankful that I had it at all, but lately I have been failing miserably. I just want my mom back, I want to scream at someone, anyone and demand an answer to the question, "Why did she leave me?" I know how childish that sounds and all I can say is that I am her child and being 36 years old doesn't mean that I miss my mom any less than my 3 year old daughter misses me when I am away from her.

Death is what it is, the emotional reaction to it is the part that gets me. Since my mom's passing I have become afraid to do things that are totally unrelated to her death. For example, I don't want to go to the grocery store by myself, I did it a million times while my mom was alive but for some reason it is hard to handle now. I guess it has to do with the fact that if my mom was alive I knew in my heart that I could call her if I didn't want to go alone and she would go along for the ride. It is really difficult to move forward without that cushion in life. I force myself to do all these things alone because I know I can't stop living nor do I want to. I have even gone to restaurants and had dinner alone with my kids which is not something I ever did. I guess it was a personal challenge I set for myself. It was actually a lot of fun, talking to my kids about Connor's birthday while we ate pancakes for dinner. I have gotten into the habit of writing down the really great stuff I do with my husband and children so that I never forget what I am living for. They say having a child is making the choice to allow your heart to live outside of your body, mine is split in two and still lives on. In the beginning of our marriage James and I would always say to each other "You are the love of my life, my future" and I never realized until now how true that is. James is most definitely my future. He is the person who is only concerned for me, I won't say he is my soulmate because I find that to be such nonsense. Marraige is never easy and the whole soulmate concept makes it sound like a walk in the park. James is not my soulmate, he is simply the man I love and trust, the man who shows me the path when I am lost and remains calm in my storm. He smiles at my clumsiness and believes that his life would not be complete if me and the kids weren't a part of it. These are the things I am living for because my mom didn't raise a fool and I keep moving forward because she didn't raise a coward either.

I miss her every moment of every day. I find myself posting messages on her Facebook account because it actually feels like I am talking to her. Silly, but true. I am sure I will visit that page tomorrow to share the fun of her grandson's 5th birthday with her. I will share with her the details of the party favors I bought alone and describe the cake that Connor agreed to after I spent 35 minutes explaining to him that he couldn't have a picture of my friend Jill! If my mom were alive i wouldn't have to tell her these things because she would have been by my side experiencing them with me. Sometimes, I just close my eyes for a few moments and pretend she has just gotten a few steps ahead of me and she will be there waiting when I finally catch up. It is a nice thought in those brief moments and when I open my eyes again I can feel her all around me. So again, I take a deep breath and step forward...

Anger makes the best speech you'll ever regret...

This morning I had to wait for a man to jog through the intersection before I could turn into the daycare center to drop off my children and it made me angry. I could feel my blood pressure rising and could hear myself yelling inside my head. I actually thought about nudging him out of the way with my car!--Okay, I didn't give that thought any serious consideration but the fact that it came to mind makes me worry about my own mental status.

I miss my mom and I am so angry at the world because she was taken from me, from my children and my family. She was my friend, the person I could call when I was upset about something stupid and now I don't have that. I know it is not fair to wish her back to a body that couldn't keep up with her spirit but dammit, I want her back. I will never call someone Mom again in my lifetime and that seems to make something inside me very dark and very irrational. I don't sleep at night anymore because I can't get past the images of my mom in that stupid hospice or being poked and prodded in that awful hospital. I know that my mom's death should not be about me, it should be about her. I can tell you what an amazing woman my mom was but I will never be convinced that you fully appreciate the fact. My children are young and they miss my mom dearly right now and I pray that they always remember her. They are so beautiful and so innocent that I want to know how God could take their grandmother! My mom lived with cancer for 10 years and never needed any form of treatment but along comes this disease that takes her within months, leaving me without her and clouding my memories with pain and anguish. She was the glue for us and now I watch my family fall to pieces and although I hate to say something so petty, IT IS NOT FAIR! Who the hell makes these decisions? I don't think they looked close enough at my mom, they didn't realize that this one woman held together an entire clan of people. Somebody overlooked the fact that we needed her before they snatched that strong, vibrant woman away from us.

There is something about laying awake in a dark room that makes you feel utterly alone even if someone is beside you. I try to lie still so as not to wake my husband but sometimes you think that tossing and turning may help you escape the terrors that your mind relives in that empty darkness. Since my mom's death I have realized that I can function on 2 to 3 hours of sleep a night and still get up and make it through my day. I am up by 5:30, showered and dressed by 6 when I wake the kids to get them off to daycare. We are out the front door by 6:45 and I am sitting at my desk by 7:30 if Cadence doesn't have a meltdown when I drop her off. Last week she cried as I went to leave and when I promised to be back after work to pick her up she screamed that Meemom never came back. Seeing so much misery in her big eyes, so blue like my mom's, makes me want snatch her up with her brother and run away. The pain always finds you and then you have to deal with the idiots that tell you it gets easier. That is the biggest load of bullshit I think anyone ever put to me. It doesn't get easier, it just becomes a part of you and you learn to hide it and tell people you are doing better. Basically, you lie to them so that they can move on with their lives. My mom would be truly disappointed if I didn't move on with my life, she would be sad to see me trapped in grief over her and other than my precious family that is the only thing that keeps me moving forward instead of stepping back or dropping out completely.

You cannot lie to everyone in your life. Some people just know you too well to allow it and others you let in by choice. My husband James knows me very well and he knows my anger despite the fact that I never voice it to him. He is sweet enough to let me have it for now and tells me I have the right to be mad because my mom's death is infuriating. At work, there is one coworker who is the person I have let in by choice. She always listens when I am teetering on the edge and she managed to not look alarmed when I shared my desire to sick my minivan on an innocent jogger. She actually manages to make me laugh with her sarcastic humor and makes me feel like something clicks inside. In a lifetime there are very few people that will share each nuance of your sense of humor. For the most part you can get people to laugh with you at the classics, but it is rare to find that person who is amused by the dark side of your humor. I have found Jill and the mean side of my humor exists pleasantly with hers. We tend to be amused by things that might make others look on in mild alarm and we always seem to find ourselves announcing that we are going to hell for whatever sarcastic comment hit the spot at a particular moment in time. I can see in her face that she is concerned for me and I know that she is upset by my pain, but she always does me the favor of dropping a witty, sarcastic line rather than boohoo me. I guess most people would take that opportunity to regain their composure but I always use it to vent the effects of my mental breakdown. It works for me and I am always thankful to Jill for being the person she is.

Jill shares stories of her mom with me and I love to listen. She is wise enough to appreciate her mom and lucky enough to consider her as her best friend. Hearing Jill speak of her mom makes me remember the wonderful times I had with my mom and it makes me realize that I would never change a single moment with her. So, I guess that jogger this morning can thank Jill and her mom for the fact that he didn't get his skinny butt run over by a minivan! And I will continue to thank Jill for her witty, intelligent sense of humor and I will thank her mom for teaching her daughter the perfect blend of sarcasm and compassion.

Missing Meemom...

Life without my mom is difficult to say the least. I miss her dearly and still have that horrible crushing sensation in my chest when I wake up and realize she is not going to be a part of my day. I do not want to make my life about surviving without my mom and I am sure in time it will stop being that, but right now I am just holding on. My days are falling into a routine which is a good thing but for some reason makes me feel trapped. Perhaps because life with my mom was anything but routine!—we did a million things on a whim or simply to say that we had done them. My mom really lived and when I have moved on to the next part of my journey I want my kids to smile and say the same of me. Throughout her entire life, my mom made things fun for us girls and it is not until now when I look at my own children that I realize she did it for her own happiness as much as for ours. On rainy days she used to strap on roller skates and we would take a few spins around the dining room table, never giving a thought to the scuffs on those beautiful hardwood floors or the last minute camping trips when she would throw a cast iron skillet in the car and we would be on our way! My mom did these crazy things because she knew that her daughters would find it fun and exciting, the idea of an adult just throwing caution to the wind. Although she taught us to be responsible, self-sufficient and considerate she made sure we knew that life was meant live.

My children are starting to come to the realization that their grandmother is not coming back. The questions about Heaven are more frequent and more detailed. They want to know where their grandmother is and why she is not returning. These moments are intense and border on impossible. I hate to look into my children’s beautiful eyes and see the comprehension of death and all that it brings. I can’t think of anything more painful than watching the look in Connor’s eyes as he comprehends. I see his eyes well up and his lip quiver and I know that he understands and is trying to adjust to such a loss.

Yesterday was a very warm Sunday afternoon and I brought the kids to play outside while James was grilling. Usually, James will be outside grilling while I finish odds and ends in the kitchen and the kids play in the living room. For some reason, since my mom died that ritual just seems unacceptable, so I hustled the kids outside to play while I sat on the patio with James. During our conversation James opened the grill and managed to get a face full of smoke that made his eyes tear. Cadence wandered over to ask James why he was crying and he told her that he had a little bit of smoke in his eyes and that made him cry. Satisfied, she went on to ask about an old scar that he has on his neck from a surgery performed when he was treated for thyroid cancer several years before we met. It has always been there and is fairly noticeable, but for some reason Cadence never saw it before this day. “Daddy, where did you get that scratch on your neck?” she asked. We explained about the scar and how it was just a mark left from having a booboo fixed and then watched as she thought this over. “Did a doctor do that?” she asked with “doctor” sounding like “docker” in her little voice, and when James told her yes a doctor had fixed the booboo for him she looked to me. “The docker didn’t fix Meemom.” I smiled sadly at her and explained that sometimes people are too sick and a doctor just can’t fix it. The thought of my mom missing her granddaughter growing up made me cry once again for the loss. Cadence looked at my tearing eyes and asked simply, “Mommy, why are you crying?” I told her it was because I missed my mom and she looked closely into my eyes and asked “Do you have a little bit of Meemom in your eye?”

I guess I do…

Chicken soup in heaven...

A bit of time has passed since my mom’s funeral and each of us is trying in our own way, to go back to our lives and make them as normal as possible. This is no small feat as my mom was such a huge part of everything we did. Dana and Dan continue to make renovations to the house they shared with my mom and my mom’s brother and sisters have headed home. James has gone back to work and I have put my children into daycare for the first time in their young lives. I chose a facility down the road from my office on the recommendation from a coworker and lucky for me she was right about how wonderful it is. My kids fell right into the routine of daycare life but it was a bit more difficult for me. James is out the door before 6 am and home around 8 pm, leaving me with breakfast and dinner and all those things before and after. I think I am doing okay with it and only screamed myself hoarse 3 days out of 5 that first week and dinner was mostly take-out. The next week got a bit better and the screaming was replaced by hysterical crying after the kids went to bed and before James got home and dinner stepped up to home-cooked frozen dinners.

The weekends seem to be the most difficult for me. I miss her the most on Saturday mornings when I would have talked to her on the phone for an hour before I got the kids dressed to swim at her house where we would talk for several more hours. I know that I will miss something about her each day and the ache I feel when I think of her being gone will never go away, it will just become a part of who I am, just like loving her is a part of me. The kids still ask when they can go to see her and I can feel the tears burning the back of my throat as I explain to them that Grandmom is in Heaven now and we won’t be seeing her until it is time for us to go there. Connor always asks if she went to Heaven because of the booboo in her brain and that is when the tears fall; big fat drops full of anguish because little boys shouldn’t know about these things. Those are the moments that I have to leave the room while I sob and beg God to please give her back.

My mom taught me that every event in your life is an opportunity whether it is good or bad is up to you. I try to use that advice when my brain won’t let go of the suffering. Although she handled it with strength and dignity, this disease forced my mom to suffer her worst nightmare before it took her away. It was a harsh thing to watch and those are the images that come to me in the dark when I cannot fall asleep. I can see her thrashing legs, her body twitching in pain as the disease ate away at her nerves and I can hear her voice slurred and breaking, asking Dan when she thought us girls were out of the room, why this was happening to her. Each time these thoughts come to drown me I remember Dan caring for my mom, I think of how wonderful it felt when I realized that for 26 years of her life my mom spent each of her days with a man who truly loved her; surrounded and loved by her daughters and grandchildren. My mom knew what she had while she had it and I remind myself that this is the lesson I need to take away from the nightmare. I need to focus on my own wonderful husband, the man who is beside me whenever I need him but always allows me to lead when I feel I must. Our beautiful children who we have come to realize are far more intelligent than we could ever hope to be, are the gifts that keep me going. When my mom was alive I would watch her with my children and think that they were born just for her. She loved each and everything about them. When I was mortified that Connor started telling anyone who would listen that his “pee-pee was getting bigger everyday” my mom simply laughed her wonderful laugh and said “Jodey, relax, men have been bragging about their pee-pees for hundreds of years” or when Cadence decided sleeping at night just wasn’t for her I could always count on my mom to come out in her pajamas after midnight to ride around the neighborhood with me until Cadence fell asleep. Thank God for the 2am Taco Bell drive-thru! It is a difficult thing to be outwitted, outlasted, and outplayed by your children but my mom always said “If both kids are in the car when you put it in drive you have faced and won half the battle.”

Tomorrow is the Fourth of July holiday and we still be having our annual cook-out at Dana’s house. We decided it wouldn’t be right to just ignore the holiday so we toned it back a bit and decided to forego the fireworks. Dana managed to get the pool clear by following my mom’s directions, throw in as many chemicals as it takes to get rid of the green and then have it tested so that the tech can tell you to run the filter continuously because you have too many chemicals in the pool. It works for us! I know it won’t feel the same being at Dana’s house without my mom but I can’t imagine being anywhere else. I love to see my kids with Dan too. During my mom’s illness they missed him as much as her and it feels good to see them playing and to watch him enjoy them. He walks us out to the car when we leave and tells the kids “I’ll see you later” just as my mom always did and I watch his eyes fill with tears as I start to pull away from the curb and the kids yell “I love you, Papa Dan.” It will be our first holiday without her but in all honesty the pain will be the same as any other day. We miss her and holidays don’t make that any better or any worse. Every place I go holds a memory of my mom. It makes it difficult some days to even run to the store for milk but again, I can’t imagine being anywhere else. Remembering my mom is never a bad thing and I know that as time goes by the images of her laughing and smiling will come before the hospital scenes. I am sure I will be able to talk about her to my children without choking on the words; I really need to be able to do that because my children deserve to remember her, to know that she always shined, she bought her dogs Happy Meals from McDonalds when she thought they looked sad, she never said no to a person in need, she loved and she really lived.

At the dinner table last night Connor asked how he could bring his bowl of chicken soup to Heaven without it getting cold. He explained that it wouldn’t help Grandmom feel better if it were cold. I explained to him that he didn’t have to worry because Grandmom didn’t need his soup in Heaven, because no one ever gets sick in Heaven. My heart ached as I watched his tiny mouth curve into that brilliant smile and he said “Then I bet Grandmom is the most fun person in Heaven, because she sure was when she was here!”

My God, how I miss her…

Never gone, never forgotten...

I arrived at the hospice to visit my mom for the last time and to be with my family during our greatest loss. I made the necessary phone calls to have my mom brought home and we stayed with her until the funeral home’s driver arrived. Dan lay in bed beside her, stroking her hair and it broke me inside to see his devastation. Later, when I left my mom’s room in search of a coffee one of the nurses at the hospice stopped me and told me she had to tell me what was in her heart. She said that she had been working in hospice care for over 25 years and that a family had never touched her heart as ours had and that each time she stepped into the room, the sight of Dan caring for my mom was enough to make her want to fall to her knees and weep. Her words brought me tears but also comfort; I know how she felt and was forced to admit the many times I had sobbed uncontrollably for Dan’s loss. When the transport for my mom arrived each of us girls stood outside the room to give Dan a moment alone before we proceeded down the hall toward the exit. Every nurse in the facility was lined among the hall to pay their respects and for the chance to hug us. It was fascinating to realize that in the 3 short weeks that my mom was their patient, we had managed to touch their lives by loving her just as they had touched our lives by caring for her.

Family and friends began to pour in from across the street and across the globe. We welcomed their comfort and took advantage of their help and support as we tried to survive the emptiness that sucks you in when you lose someone you love dearly. Funeral arrangements were made and the obituary was placed and all of us agreed that we would wear red to the service as a tribute to our mom’s memory. The color red symbolizes intense passion, courage and it was most definitely my mom’s color. We all split in different directions and scoured the malls for red blouses and dresses. Dana and I were on our way out of the Neshaminy Mall to hit a few other stores on the drive home when I got the call from Kelly, letting me know that Helen had made herself prime blog material once again. Kelly informed me that she had rode the escalator down in Boscov’s and when she turned to speak with Helen, realized that she was still at the top, sweating profusely while touching her foot to the first step and pulling back. “I can’t do it. I’m scared.” Kelly realized the panic attack for what it was and decided the best way to handle Helen’s moment of weakness was to call Dana and I so that we could laugh about it while Kelly walked to the UP escalator, crossed to where Helen stood and pulled her along on the DOWN escalator. You just gotta love Helen!

The afternoon of my mom’s service found my sisters and I, dressed in our various red dresses, standing beside Dan; his red shirt stood out boldly against his dark suit, the coordinating tie was straight and even, thanks to the help of his brother David, whose skill with such things always reminds me not to judge a book by its cover. Over our heads was a flat panel TV that looped a slide show of images of my mom during some of our favorite moments, as one image faded into the next the music flowed through the room. An image of Dana and my mom with their arms around each other and backs to the camera filled the screen as the lyrics to “In My Daughter’s Eyes” started; my mom’s favorite song came next, “On the Way to Cape May” while images of her at the beach with my children flashed across the screen. Each of us girls stood below, our heads angled upward watching the images of our beautiful mother while our stepfather kept his eyes to the floor, missing her more than he could bear. The first throng of people came through the double doors and we watched as they stopped to view the pictures; a beautiful blow-up of my mom and Dan when they took a cruise for their wedding anniversary and a poster size composite of hundreds of our favorite photos of my mom, each carefully arranged with the edges feathered and artfully blended into the next. I watched as people laughed at the photos and cried over the DVD images and knew I would never be able to thank the graphics team at mine and Dana’s office enough. They spent their own time putting together these images and their own money having them printed; the gesture was more than you could ask of anyone, but they did it for us. I realize now that I do not just share office space with my coworkers, but life itself. They followed us through my mom’s illness, praying for her, crying for us, stepping in to help with fundraisers when money got tight, they called in favors when we needed a care facility to place my mom and they never stopped listening. Now, they were here to grieve with us, just as family always is.

I watched; mesmerized as our family and friends began to fill the rows of seating and my eyes were drawn to my cousin Donny, whose sheer height alone lets him stand out in any crowd. I thought of his simple statement at dinner the previous night when he sat on the deck of my mom’s home and said easily to me, “Life is messy.” For some reason, that simple statement made things clear for me. The best times I have had in my life were always the hardest to clean up after. Physically and emotionally, life is messy, nothing is perfect, outcomes are uncertain and nothing follows that simple straight line, but in the end it all leads to love and family and the experiences you would never trade, regardless of the clean-up.

For the next 2 hours, my sisters and I would stand beside Dan greeting family and friends, thanking them for coming to pay their respects while we tried desperately to dodge the “lip-kissers.” These are the people that think it is acceptable to plant their condolences right smack dab on your mouth by coming at you with 2 puckered lips and the accuracy of a sonar-guided missile! It just doesn’t matter how much ducking, weaving or head-bobbing you perform, they just get you in the end and you are left to wipe your mouth, as indiscreetly as possible, on the inside of your shirt collar. As the line of people dwindled, we watched the funeral director cross to the podium with the priest, signaling that the services would begin and we were finally able to be seated. I listened to the words spoken and repeated the prayers on auto pilot until the priest concluded and asked for those who wished to speak to please come forward. A quick glance at Dan’s face confirmed that I would be the first to speak. I stepped up to the podium and looked out over the crowd and realized I would not make that mistake again. I felt tears burning the back of my eyes, heard the quiver in my voice and felt that deep, hollow emptiness that comes with the realization that you are alone. I wondered how I would say my peace if I couldn’t get passed that first sentence and then my husband was beside me. I felt the strength and comfort from him and knew that I would always have someone to stand with me. I continued to speak the words I had written for my mom…

My son believes that the stars in the sky are simply holes in the curtains of heaven where our loved ones look down upon us and enjoy our lives with us. As I put him to bed these last nights, I heard him whispering into the sky, “I see you seeing me, Grandmom” and I know this is the way he keeps my mom alive in his little heart, just as I will always hear her laughter in my own or see her eyes in those of my daughter and my niece, I will always witness her selflessness and sense of family in my sister, Dana; I will feel her strength and determination in my sister Kelly, I will observe her style and pride in my sister Christina and in my stepfather, Dan, I will always find her love.
My mom always told us that as her daughters we did not owe her our love or respect. She explained that she had chosen to bring each of us into this world for her own pure joy and that each of us should know that we had her love and respect as we moved through our lives. I never told my mom how much I loved her or about the respect I have for her; there was never any reason to because she already knew.
She is the woman who gave me strength and taught me determination, who showed me that a little common sense can go a long way and that life’s most difficult moments should always be handled with honesty, integrity and a little bit of pride. She has always made sacrifices for each of us and has shown me the woman I want to be. Hers were the words that made my voice; hers were the lessons that shaped my choice. In those last moments of her life I know how hard it was for her to let me go, to realize that each of her daughters had learned to stand. We will never forget the things she taught and will always have the strength her love brought us. We will thank God each day for blessing us with her love and for taking her home when her work here was done.
It was an unwritten rule at my mom’s house that you never said good-bye when you left because it meant you would never see that person again. So, I would just like to say “I love you, Mom and I will see you later.”

I took my seat to listen as Dan spoke. He thanked my mom for the values she brought to his life and told how her daughters would miss her and how much he would always love her. I touched his arm as he retook his seat next to me; the pain was too great to offer any more comfort than that. Dana and Kelly walked to the podium together and I heard Kelly start to speak and I sobbed as she thanked Dan for the care he gave my mom.

I believe each person in this world has a guardian angel that protects and cares for them, my mom married hers. My mom’s illness took her independence away from her one day at a time and the only comfort during it all was knowing Dan was beside her. He cared for her every need, became her legs when she couldn’t walk, her voice when she couldn’t speak. He wiped tears from her eyes, washed her hair and loved her unconditionally. In any marriage you rarely see what goes on behind closed doors, but during our battle Dan opened that door to each of us girls and I for one saw Dan through my mother’s eyes and the sight overwhelms me. I know that when I miss my mom the most, I can simply stand beside Dan because that is where she will always be. From all of us, thank you for everything, Dan.

Dana followed with a few short sentences and I knew in my heart that she could never speak all the thoughts that were in her heart. Her sadness is deep and the loss she feels seems to weigh so heavy on her shoulders that I am amazed at the strength she displayed in those brief words. It tore at me to watch her breakdown and to see her and Kelly turn to one another, just holding on.

Whether it is lunch at Red Lobster, shopping at Lane Bryant or discussing new ideas for renovations to our home, I will miss something about my mom each day of my life. She taught me to be my own person and showed me what I should, why I shouldn’t and when I must. Besides being an amazing mother she was my best friend and I am truly lost without her.

My mom has gone on to travel the rest of her journey alone and when our time comes she will be there, waiting to welcome us home.

A golden heart stops beating...

The nurse who took care of my mom that day asked casually if Dan was going to be up that night and when Dana explained that he was needed at work and would be there the next evening the nurse advised her to have him come as soon as possible and to assemble the rest of our family. I answered Dana’s call around 6 and she was forced to tell me that they believed my mom would not make it through the night, we had anywhere from a few minutes to a few hours, she had already called Dan. I made the remaining phone calls, gathering Kelly and Christina, our father and while I called my Aunt Cathy to ask her to get in touch with Bud and Debbie, James took a quick shower and my brother-in-law came to sit with the kids.

We piled into my minivan and met up with Dana and Helen at Penn Hospice. I walked down the hall to my mom’s room with Chris by my side, I was so focused on getting to her that it took me a moment to realize that Chris was dropping behind. I turned to her and saw the fear across her face, “I don’t think I can go in there.” she stated. I told her I would go in first and tell her what I saw and she could decide then if it was something she wanted to face. She nodded her head slowly looking passed me at the closed door to my mom’s room.

I pushed the door open and my eyes were drawn to Dana, she had pulled a chair up to my mom’s bed. She held my mom’s hand in her own and laid her head across my mom’s lap. I heard the shallow gasping sound and saw the slight twitch of my mom’s head before my brain realized those two things were related. The gasping sound of my mom trying to draw in air while her head moved with the effort; in that split second I started to take inventory of my entire life, all the things I had meant to say, projects I should have completed, actions I should have taken would never be put on hold again and I would always remember to appreciate what I had when it was there and not when it was gone. Her nail beds were blue as were her tongue and lips. Her eyes were closed as they have been for several weeks and out of habit I reached out to lift her lids and saw those blue eyes surrounded by red. It wasn’t like seeing someone with bloodshot eyes, it was as if her eyes had actually filled and instead of glistening tears I expected to see streaks of blood once the fluid overwhelmed her. I let go of her lids quickly and waited for the sickening fear in my heart to subside before I stepped into the hall to get Chris. I explained to her what I saw and hugged her tight before we stepped to my mom’s bedside.

I leaned over my mom and told her I loved her, one of the few times I have said that to her out loud. I told her she was my very best friend and that I would always miss her but that she needed to take care of herself now because we would all be fine. I never told her it was okay for her to go because I know that is a decision she will make for herself. I watched as Dan leaned his head against hers and stroked her hair, Kelly pulled a chair next to Dana while Chris and I sat across from them both, my father dropped to his knees at the foot of her bed and bowed his head. Helen tried to step back and away stating that we were her daughters and she didn’t want to be in our way; we pulled her close, into our circle where she belongs. Time seemed to stand still and the room was horribly silent; the sounds of my mom’s hitching breaths were so loud and so wrong. I held her hand in my own and stared at the blue pallor of her fingertips. The full realization of the impending loss weighed differently on each of us but it was something we shared all the same. I am not sure what everyone else thought of in those long silent moments but my mind wandered over the nightmares of my mom’s illness; placement of the feeding tube, the trach tube, the lumbar punctures, and the awful waiting and total confusion that comes with the diagnosis of a rare illness. When I was at my lowest, I forced myself to think of the life I shared with my mom and I knew in that moment that if I had it to do over again I would live the nightmare again so that this would be the woman I called mom.

My mom’s condition remained the same, around midnight we ordered some pizzas and started switching off to eat when it arrived, never leaving her alone. Dana did not move from the chair by her bed and later, when I finally woke her she had sheet creases across her head where it had simply dropped to the bed in exhaustion. She never ate and never let go of my mom’s hand. Dan continued to smooth her hair back and tell her it was just a bad day after he took a split second to devour a slice of pizza. The silence dragged on as we absorbed the shock of arriving at that moment but as time continued to go by the TV was turned on and the laughter began. It is strange how natural it felt to laugh in those moments. In the movies everyone is serious and waits until the deathbed occupant bestows on them, some beautiful words of wisdom that change their lives, but in life it is just not that way. For us, it was tears and laughter and more tears and more laughter that lasted through the weekend. We spent the weekend with my mom just as we did every other weekend of our lives and when she passed quietly Monday morning, alone, with Dan singing softly beside her, I knew we had all been exactly where she had meant for us to be,

Where are we???

The phone rang after ten that night and plunged each of us deeper into this nightmare. Dan had stayed at the hospital with my mom and called to let us know that she was having difficulty breathing and had actually stopped for a few seconds. The doctors had been in to explain that although we had a “do not resuscitate” order in place they wanted to inform us that they were not certain if the respiratory difficulties were being caused by the PML itself or from the case of pneumonia she had acquired. They figured that with this uncertainty we would like to reconsider that order and have my mom placed on a ventilator if she stopped breathing during the night thus giving us the opportunity to know for sure before we made our final decision. If only those doctors had realized what they were doing when they put this decision in our laps; if my mom stopped breathing and was hooked to the ventilator we would be forced to sign a paper to have it removed if it turned out to be the disease affecting her breathing. I don’t know many who have the emotional strength to make that choice much less put it into writing. As fate would have it my mom did not have any further difficulties throughout the night and was sent for a chest x-ray in the early hours of the morning.

The results of the chest x-ray showed that the pneumonia my mom suffered from had improved significantly and sadly, this is not the news we had hoped to hear. Facing the true reality of PML is a horrible chore and we have all stumbled greatly. After processing these results we agreed to follow the doctors’ advice and have my mom moved to a hospice facility. Dana and I did manage to find a nice facility within 5 minutes of our work and home and the Admissions Director told us he would have a bed available for mom in a week to 10 days. The hospital social worker sent in representatives from their hospice facility to evaluate my mom’s condition to possibly offer their services in the Rhoads building until the transfer could happen. Once the medical liaison for hospice assessed my mom’s condition she convinced us to have my mom moved to the Penn Hospice at Rittenhouse because she was afraid she would not be stable enough to be transferred to Statesmen Health Center, the hospice facility that Dana and I had chosen close to home.

Watching Dan pack up all of his and my mom’s belongings that surrounded her room at HUP was heartbreaking. He was hurting and you could feel the sadness radiating from him; you could see the loss on his face, a man losing the love of his life, the only future he had ever imagined. Still, the hardest thing in that moment was knowing that Dan was watching Dana and I and worrying about the loss we were experiencing. I always ache for Dan, I can’t imagine losing the partner you chose in life, for life. Dan has been with my mom for over 25 years and it is quite obvious that he loves her with all his heart. You can see it in the way he cares for her and the way he talks to her; he treats her no different than he did before she became ill. For Dan, my mom is still the woman he loves and the partner he chose; I grieve for his loss and love him for the way he loves her.

Penn Hospice at Rittenhouse is an excellent facility. The staff there is very considerate of our needs and care for my mom as a person, not a patient. My mom is always clean and comfortable and it is rare to enter her room and not find someone with her, talking to her. It is nice to watch the doctor speak to my mom and smooth the hair from her brow, instead of pretending she is not in the room while he informs Dana and I of her health. The medical equipment needed to keep my mom comfortable is subtle and worked into the background of the warm, homey atmosphere of the hospice. Our family is more comfortable in the hospice environment and we don’t have that strange resentment against the caregivers like we started to develop toward the HUP nursing staff. After meeting with the physician from Penn Hospice, Dana and I were shocked to learn that my mom was being overfed during her stay at HUP and as a result she was holding 40 to 60 pounds of excess fluid over her body. The physician was convinced that this was causing my mom great discomfort and was most likely responsible for her difficulty in breathing as she could not expand her lungs enough to inhale a deep breath because of the pressure of all the fluid and he also believed it was causing the increase in her secretions and coughing as the excess fluid backed up in her esophagus.

Over a few days at the hospice the swelling in my mom’s arms and legs was almost gone; her stomach was not as distended. She started to look like mom again; striking and beautiful. Dana and I attempted to settle in to hospice life, but despite the wonderful care my mom receives and the pleasant environment it’s not an easy task. The reason you are there is horrifying and tends to take away from the stylish paint and trendy décor. As we entered my mom’s room one afternoon we were greeted by a nurse who simply stared at us when we pushed open the door to her room. When Dana said her hellos to her she didn’t give the formal introduction of who she was and what she did for my mom that we had become accustomed to hearing. She looked at us, her face puzzled, a bit surprised and said slowly, “I think she is communicating with me.”

Welcome, everyone, to what we like to call SQUARE ONE…

In the long term...

Dr Schuster has agreed to proceed with the third round of T cell therapy. He has explained to our family that the disease has not only destroyed the myelin in certain areas of my mom’s brainstem but has caused damage to the nerves themselves; he has little hope for her recovery but even less hope of convincing Dana that stopping now is the right choice.

My mom’s illness has taught me that my sister Dana is a force to be reckoned with. She has a sharp, sarcastic nature that leads people to believe she is an intimidating presence, but the reality of it all is that she uses that sarcastic shield to hide shyness and a heart of gold. Dana spends all her free time at the hospital with my mom or finishing renovations on her home where my mom lives with her. She takes care of everyone under her roof without complaint and carries the burden of my mom’s illness not out of obligation, but purely out of love. My mom has been in the hospital for four months and I can only think of 4 days that Dana hasn’t been by her side. Sometimes I think to myself that my mom has to get better because it just wouldn’t be fair of God to take her from Dana

I honestly wish I had Dana’s faith in my mom’s ability to heal but I am just not that optimistic. I see my mom in that hospital bed and just can’t see how she will get better. How close do you get to Death’s door before they don’t let you turn back? It scares me more than anything I have seen in my life. I don’t want my mom to live this way but I am afraid of losing her all the same. The emotions that run through me are confusing and hurtful. Sometimes I think it would be better to let my mom go and the guilt that comes with admitting that is enough to make me choke and other times I cry myself to sleep and beg God to leave her here with me.

Dana and I have accepted the task of searching for a long-term care facility for my mom. Once the third cell infusion is complete there will not be any reason for my mom to remain at HUP. The idea of leaving HUP feels strange somehow. We have spent four months of our lives at this hospital, we have learned how they operate and what buildings connect to where, we have even found the secret staircase in the Rhoads building that leads right to the cafeteria! We know this hospital, as we leave during the 7pm shift change there are at least 15 nurses who wave and call us by name, we know that the Rhoads elevators are extremely slow, but the ones in Founders actually talk and tell you if the elevator is going up or down, the bathrooms outside the Pearlman Center are usually the cleanest and if you accidentally pull the nurses button in the stall a nurse will actually come to check if all is well. I can think of much better places for a home away from home, but this is what we know and in a time when everything is so uncertain it is hard to give it up.

The social worker on the 7th floor of the Rhoads building gave me a list of 125 nursing homes/acute care facilities within 40 miles of our home. I think it is possible that she is as horrible at geography as I am because a 40 mile radius landed us some choices that were at least a 3 hour drive! Because Dana is good with locations she took the task of sorting the list by the distance they were from our home and work. I then took to the internet, searching each facility to see if it could accommodate a patient with my mom’s needs, this process brought our list down to 32 facilities. A friend at work sent me a link to a news story she had seen about the worst nursing facilities in the country, this eliminated 3 additional facilities (and scared the hell out of me!). Another friend and coworker pointed me in the direction of the Joint Committee which inspects nursing homes and long term care facilities and grades them on a scale of 1 to 5 based on several health and safety factors. Through these reports you can gain access to anything from patient complaints to the results of the last fire marshal inspection. I took advantage of this information and used it to eliminate facilities that had complaints of patient abuse or high numbers of patients with bed or pressure sores. Sadly, this eliminated more options than I thought it would, bringing our list of facilities we wished to look at in person down to 9 with an additional facility recommended by the social worker.

AristaCare at Meadow Springs was a bit further away than we would have liked but we decided to tour the facility first because the HUP social worker had suggested it and the facility had already sent their medical liaison to evaluate my mom’s condition and confirmed that they could accept her immediately. Kelly and Helen agreed to tour the facility with Dana and me because the more opinions the better, of course in the case of AristaCare the vote was unanimous. The smell of human waste that permeated the entire facility including the lobby was enough to have my cousin Helen lean over me as I completed the sign in sheet and say “What the fuck are you doing? It smells like shit, we’re leaving.” As we toured the facility and were led deeper into the bowels of hell (at least that is what the bowels of hell must smell like) we encountered a load of grouchy nurses who seemed to have nothing to do except for one who was eating a sandwich; how she managed to eat with that smell is still beyond me. We were introduced to the physical therapist on staff and she was nice enough to explain to us that the level of care my mom received would depend on how much her insurance was willing to pay. I have to give her credit and state that she did try to remove her foot from her mouth when our jaws dropped but the conversation was pretty much complete by that time. As we passed a nurse in the hallway flushing a patient’s feeding tube the Admissions Manager offered to introduce us to the respiratory attendant. I took a quick look at Kelly as she came up behind me and the slashing motion she was making across her throat mirrored my thoughts; Helen and Dana still had their faces buried in their shirts, trying to escape the odor. I politely informed the Admissions Manager that it wouldn’t be necessary for us to meet with any additional staff and smiled as I asked if she could show us the way out. At that point the smile was more of an effort to calm my gag reflex than a show of manners and I really could not remember how to get the hell out of there; I am thinking now that is how the other patients ended up there in the first place! We stepped back into the sunshine and fresh air, greeted by a little, old lady in a motorized wheelchair who kept drawing us into conversation with comments about the weather. She rolled along behind us as we walked to our car and kept up the polite chit chat; I heard the motor on her chair kick into a higher gear as the automatic door on my minivan eased open. Now, I can’t be certain but I believe she was going to drive that chair right through that open doorway, if the curb hadn’t been so steep I am sure I wouldn’t still be wondering about her escape plans.

Shoot the moon...

Each night Dana and I leave our office in Newtown and steer my minivan to the ramp for 95 where we will spend the next hour or so in traffic before reaching the parking garage at HUP. When you live in the suburbs you find traffic in the city quite amazing and you believe that it won’t be as congested when you try it again the next day. After making this particular journey just about every day for 4 months, Dana and I have gotten passed those asinine thoughts. We have realized that there is no good time of day that will allow you to avoid traffic into or out of the city, but we have learned that the type of vehicle you drive has a huge effect on how you are treated once you are a member of that traffic jam. In our four months of commuting we have taken several different vehicles and I know it sounds insane but I strongly believe the validity of this statement, “THERE IS NO RESPECT FOR THE MINIVAN.”

In the first few months of my mom’s illness, Dana and I rode to HUP each day in my husband’s vehicle, a 2006 Pontiac Torrent. The Torrent is your basic small model SUV, nothing special, and when placed in the congested city traffic it is pretty much unnoticed. We just chugged along with the rest of the vehicles and never received a second glance. Dana drives a 2008 GMC Sierra, which is a big and beautiful pickup truck. You step off the running board and hoist yourself into the seat of this truck and spend much of the trip worrying about how in the hell you are going to get back down once you reach your destination. When you are stuck in the congestion of city traffic in this monster people notice and avoid you. Smaller vehicles tend to cut off the guy behind you rather than dare to edge themselves in front of you and when you attempt to merge spaces between cars just magically open like Moses parting the sea. When other drivers look back at you it is not to flip you off or curse at you, but rather to confirm the fact that they just saw two women in the cab of what is considered by society to be a man’s vehicle. I must admit that you do feel quite superior peering down into the cars of you fellow traffic jam patrons, but spending 2 hours crawling along with traffic feels much worse when you realize it costs you $80 to fill your tank and you only get about 17 miles to a gallon!

The Toyota Sienna I purchased last year has become the transport of choice when heading to HUP. The minivan can hold up to eight people which is great when we all want to go to the hospital but are too broke for gas and parking. It gets great gas mileage, rides smooth and even has DVD players built into the headrests of the front seats. The only drawback to our luxury mode of transportation is that a minivan just doesn’t have it in the way of intimidation. Much of our traffic jam time is spent being honked at, cut off, flipped off and for some reason we are the target of choice for the homeless panhandler who hangs out on the corner of Chestnut in a pair of brand new Columbia boots. Because I truly love my minivan I was reluctant to admit this, but after the ride into HUP this evening I am forced to face the fact that the minivan is most definitely the Rodney Dangerfield of vehicles, no respect.

Tonight’s traffic jam landed Dana and I behind a school bus full of rowdy middle school boys. They spent part of the time taking their shirts off and hanging them out the bus window or running up and down the aisle and jumping from seat to seat with no concern for the occupant. Of course, the realization that the minivan behind them contained two women definitely raised the amusement level and before Dana and I knew what they were up to the first of many skinny butts was plastered to the bus window. From the scene we saw Dana and I imagined the laughter on that bus was extremely loud and totally obnoxious. As Dana and I made a very good show of ignoring the scene we couldn’t help but notice a rather large, heavyset boy come up to the window. Thankfully, as he assumed the “shoot the moon” position traffic began moving once again. The bus driver pushed the gas, the bus lurched forward and our hefty, little moonbeam landed on his backside holding onto his pants. The laughter was once again extremely loud and totally obnoxious, but this time it came from Dana and I in the minivan. We laughed hysterically for the next 10 minutes and left an opening between ourselves and the bus, but for the first time in minivan history, not a soul cut us off! Traffic continued to crawl and the busload of prepubescent boys continued to stick their buns to the bus window until we passed a cop on the shoulder writing a traffic citation. Suddenly, we were faced with a well-behaved group of boys smiling and waving at us.

We changed lanes after passing the police officer and as we proceeded off the ramp that was our exit, I thought about how my son would most likely not be riding the bus to kindergarten come September!

The wisdom to know the difference...

Our family is reeling from the positive results of the PCR. The experimental treatment that we pinned all our hopes on has not worked and now the fear of losing our mom is a harsh reality hovering on the horizon. Each time I let myself think of life without my mom an overwhelming panic rises in my chest. It takes so much effort to stop it from clawing its way out that I am truly exhausted at the end of each day.

Another MRI will be performed on Friday to see if the lesion in my mom's brain stem has gotten worse or remained the same. The results of this test will decide whether or not it is worth proceeding with the final round of cells that was stated in the original protocol. I feel in my heart that this final treatment will not make a difference, but I know how it feels to not want to stop too. The question I ask myself every minute of each day: Is acceptance of a situation the same as quitting? I don't want to lose my mom, she is a huge part of my heart and my soul but I don't want to make her stay in a life she doesn't want. My mom always laughed, I can see her smile and hear the sound of it ringing in my head. I miss those moments when trivial things were so amusing and we would laugh until tears came. My mom doesn't laugh anymore, things are not funny and our sadness is great.

Her doctor's keep talking about my mom's level of awareness and responsiveness and this seems to be of so much importance to them. I know my mom is with us, I see the recognition in her eyes when she sees our family, but it doesn't carry the importance for me that it does for her doctors. I brought Cadence to the hospital with me that day to visit my mom and I saw my mom's eyes on her; my mom was seeing her granddaughter, really seeing her. The heartache for me is that my mom cannot interact with the people she loves; she watched Cadence that day and listened to her sing and tell stories but she couldn't talk to her, hug her, touch her silky baby hair. What kind of life is that when those you love become nothing more than a picture show.

There is still the chance that the third treatment will kill the virus, but the prognosis is grim for my mom's recovery of functionality. What is the point of killing a virus if the affects of it can never be taken away. I don't want to condemn my mom to a life without her own laughter, her own independence and I know she would not want that either. The hard part is knowing when to stop hoping and whether or not you can live the rest of your life with the decisions you make. I carry a lot of guilt over some decisions I made in my mom's care and despite the fact that others tell me I made the best choices possible with the information I had, I know it is still baggage that I will carry for a long time to come. I will do anything in my power to ensure that no one else in my family has to endure the weight of guilt like I do, but I also have to keep my mom's wishes in my sight as we move forward. This is an emotional balance beam that I am not sure how to move across and the consequences of a fall are very steep.

Please, no...

The spinal fluid is positive for the virus.

Our family has prayed for a miracle to save my mom's life, but we now know the true miracle is that she has been ours to love for all these years.

More tests mean more questions...

My mom continues to have her good days and bad days, making this roller coaster ride that much worse. Some days I will walk into her hospital room with Dana and she will not even be aware of us, but then the very next day she will be answering the questions Chris asks while she sits at her bedside or trying to mouth Helen’s name through her lips. Yesterday was a very good visit; my mom was alert and aware as we all filed into her room with our gowns and surgical gloves in place. Because we are all fairly broke after this month of traveling between home and HUP we arranged to ride together yesterday. Dana, Kelly, Chris, Helen and I arrived at HUP courtesy of my minivan, so when we file into my mom’s room we are a parade without the float.

We helped Dan wash my mom’s hair because the dry, leave-in shampoo the hospital offers is totally unacceptable to him. “Your mom would not like that,” he says each time her hair goes unwashed for more than a day. Dana trimmed and filed her fingernails and covered her hands in lotion while Kelly did her feet. During this entire “spa” excursion we chatted to each other and watched as my mom’s eyes went to the person who was speaking. She watched each of us intently as we spoke from different areas of the room. It was wonderful to see her so aware of us and she even managed to push sound from her mouth. It was just an “ahhh” sound but it was her voice and I didn’t realize until then how much I missed the simple things about my mom; the sound of her voice, the smell of her newly washed hair. We love her so much, would God really take her?

My Aunt Cathy came to visit my mom over the weekend and I saw how difficult this is for her. Her last visit with my mom was in February when we received the PML diagnosis. At that time my mom was still able to move and talk, so I am sure it was quite a shock for her to be faced with my mom’s immobility and the trach and feeding tubes. As I dressed into a gown outside my mom’s room with Cathy I tried to tell her every detail of my mom’s appearance to eliminate the shock of her deterioration. I warned her about the trach, what it looks like when they suction her lungs, the fact that her tongue doesn’t always stay in her mouth and sometimes her eyes glaze and don’t focus; I told her all these things and she assured me she was fine. “If you’re not fine and the tears start, make sure you tell her it is because you are so glad to see her,” I said. The changes in my mom’s condition have been gradual for me but I have to remember the shock it is for those who haven’t seen her every day. For some reason, it is important to me that my mom not see fear in our eyes and so I try to cover it, despite the fact that I know she sees right through us all and always has. As Cathy came through the doorway and looked to my mom in her bed, the tears came. She smoothed back my mom’s hair as she spoke to her and told her she was so happy to see her. I realized instantly that she meant those words, she cried over the joy of seeing my mom not over sadness of the disease she endures. What I say in that moment were two sisters who missed one another dearly. And for a bit my mom wasn’t sick, she was just enjoying her sister and the shock was all mine.

Because of my mom’s inconsistent responsiveness, her doctors thought it would be a good idea to perform an EEG to check her brain activity. An electroencephalogram (EEG) is a test that measures and records the electrical activity of your brain. These special sensors called electrodes are attached to your head with glue that is almost impossible to get off and hooked by wires to a computer. The computer records your brain's electrical activity on the screen or on paper as wavy lines. These lines mean pretty much nothing to me and after talking to the neurologists who read these tests I realize it means little more to them. Certain conditions can be seen by the changes in the normal pattern of the brain's electrical activity. This seems like such a simple thing but things aren’t always as they seem. After the test was performed the doctors came to tell us that there was a lot of brain activity from my mom where they had expected to not find anything. This was great news, but before we could even crack a smile they explained a bit more. Although the activity level was high they still needed to decide if the brain activity was cognitive thought or just reflex. In my heart I know my mom is there, but I am forced to wait for further interpretation of the EEG results.

The activity level of the EEG did push us forward to having a lumbar puncture performed the next day. A lumbar puncture is a procedure to collect and look at the fluid surrounding the brain and spinal cord. During the lumbar puncture, a needle is inserted into my mom’s spinal canal low in her back. Samples of fluid are taken and a test called a polymerase chain reaction or PCR will be performed to look for levels of the JC virus. PCR is a complicated test to explain and required a conversation with the MD I work with before I could begin to understand it; in no way should my lame explanation of this theory reflect on her brilliance! Basically, PCR is a way to amplify a piece of DNA containing a particular sequence or target (JC virus, in our case). The method relies on thermal cycling; a process of repeated heating and cooling to start DNA replication, each strand is then used as the blueprint to selectively amplify the target DNA.

The problem with this test is that it is positive or negative not quantitative, which means it does not measure the level of the virus, only whether or not it is there. This leaves us with more questions just as the EEG did. If the test comes back positive do we decide the T cell therapy did not work for my mom or do we consider the fact that the first two treatments could have lowered the virus level and we still have a chance of killing it if we move forward with the third, postponed therapy? If the test is negative do we do the third round of T cells as an insurance policy against the fact that the level is too low to be detected but still there with the ability to grow? I used to think that decisions like these were based on medical facts, but through this experience with my mom’s illness I have come to realize that there are actually very few medical facts. The practice of medicine is just like any other part of life, you do the best you can with the information you have and people are always your most unpredictable variable.

HUP meets Cadence...

Because she hounded me for weeks and also because she has the best beggar’s face in history, I gave in and allowed 3 year old Cadence to visit my mom. I was very concerned about her reaction to the visible affects of my mom’s illness but as I watched her snuggle up to my mom in that hospital bed I knew she was fine. As my Aunt Deb said, Cadence sees with her heart and at that moment her little heart only had room for Meemom. My mom was sleeping when Cadence came in but once we had her tiny hands covered in surgical gloves and a huge hospital gown tied at her back Cadence soon ended that nap; “Wake up Meemom, I’m here now!”

My mom’s eyes came open and focused on her youngest grandchild, as recognition dawned she pulled up and turned herself away. I knew in that moment that she was afraid of how she looked to Cadence and I murmured to her, comforting her, convincing her it was fine. She turned back as Cadence pointed to the trach tube and announced “Meemom, I love you pretty necklace.” We all smiled, seeing life through a child’s eyes is quite wonderful. My mom’s eyes never left Cadence’s face during that 2 hour visit in which we had to listen to a million rambling stories, a rendition of Twinkle Twinkle Little Star and demands that Meemom “Wake up her mouth.” Of course, my mom tried to speak because how can you not try to satisfy the innocent requests of a child, but each time she tried there was no sound just movement and bubbles of saliva. It didn’t really matter that she didn’t talk in that moment; we were thrilled that she tried and the light in her eyes said more than enough. Cadence moved on to coating my mom’s mouth in flavored lip gloss, which made us laugh as we watched my mom’s tongue peek out and lick it off. It is an ongoing joke in our family that my mom runs through a tube of flavored Chapstick each week because she keeps licking it off of her lips and is then forced to reapply!

Cadence has not seen my mom or stepfather in 3 months and her joy at the sight of them both was a thrill. When my mom finally fell asleep, Cadence sat in the family room of Rhoads 7 and played board games with Dan. She pulled out a chess board, “Papa Dan, you play with me? Peas, peas! (the “l” in please is hard to come by somedays). Dan set up the game board while Cadence moved the knights around yelling “Nay, nay, nay.” They played until it was time to leave and as we walked passed my mom’s room Cadence yelled “I love you, Meemom! See ya later!!”

My mom always corrected us if we were leaving her house and said “good-bye” because she felt that it was too permanent; she taught the kids to say “see ya later” or “see ya soon” and hearing Cadence that day brought me to the edge, suffocating me. It brought to the surface the fear I hide, the fear of losing. I don’t have many memories that my mom is not a part of and I am afraid of how this will end; losing her will leave part of me dead and empty and somewhat alone without her. She is my voice, my laughter and my song, the mirror of my unseen heart, she is the place where I always belong and I don’t want to say good-bye.

Two steps back...

The third and final T cell treatment was postponed on Friday due to my mom's failure to respond to her environment. Dana came in to see her that Wednesday and said she did not show any response or recognition and one pupil was larger than the other. An MRI was ordered and performed and a meeting with our family and each of my mom's doctors was scheduled for noon on Friday. We all gathered in the small family room of Rhoads 7 to discuss my mom's case. The other doctors on my mom's team stood against the walls while Dr Schuster pulled up a chair to join the circle formed by our family. We accepted him without question; this is the man who gave us the opportunity to fight when others thought it hopeless.

The MRI results show swelling in the area of the brain stem and this is most likely the cause of my mom's non-responsiveness. We took this information with a grain of salt, we had been warned that it was a possibility but had also been assured that it was easily controlled with steroids. The expression on Dr Schuster's face, however, did not sit quite as well as the mention of IRIS. He went on to explain to us that we cannot be sure if the inflammation is being caused by IRIS or by a worsening of the PML itself. My mom was given steroids that day and we would wait until Monday to see if she showed improvement that would lead her doctors to believe that she was suffering from IRIS and not a worsening of her disease. With tears in his eyes, Dr Schuster explained to us that if it was the disease my mom would be gone from us in the next few weeks.

My eyes searched the room until they met those of my sisters. It helped me push aside the horrible emptiness when I saw their eyes search for mine as well. I could see the pain and loss that we avoided talking about for these last few months. We all know where we stand with this illness and we always have, it is just difficult to hear it. And now, we wait and we wonder.

Will God really take our mom...