I wish I could update everyone with the wonderful news of our successful battle…but that just isn’t the case. It has been a rough day, and I’m incredibly frustrated by the system right. I wish I could understand why insurance offers benefits that they make impossible to utilize?

Micah and Maya were in action at 8:15 this morning. At 9:00 am sharp, I called the insurance company to talk to our care coordinator, but she did not answer the phone. I left a message with my information, and hoped she would call back before our meeting.

Megan arrived and I took Micah to preschool. He did a little better today – he had a few attempts at pushing and screaming, but I was able to intervene and keep him from any major incidents. The “good” news is a few of the other children were doing the same thing, so Micah did not look like the trouble child. There is one parent, however, that has this way of watching me (and Micah) as if she is threatened by us. Micah pushed her daughter last week, and she has been giving me this “you are a parent of a horrible, uncontrolled child” kind of look. I have since decided that her child cries at everything, and seems to always get pushed by EVERYONE, and perhaps she is a bit of a drama queen. The only child who seemed to be upset, or pushed, or injured all day was her child. Coincidence?

Right after Micah’s class, Elliot and I took Maya and headed up to Hopkins. Even Delicious was armed for battle…complete in her Baby Armour outfit, courtesy of Under Armour. I passed my father on the way there, and we all arrived around the same time. During my car ride up, the insurance coordinator called on the phone. She went over our benefits, and said we have 60 days of rehabilitation coverage. She indicated that if the doctor recommended a longer stay, it would be covered. She also told us that we could take mom to a “sub-acute” rehab location, and that our insurance would cover transfers back for radiaiton treatment.

Many of you are probably wondering what the difference is between acute and sub-acute. I certainly was! An acute rehab facility is a higher standard of care than a sub-acute facility. It requires the following:

• treatment from a multidisciplinary team consisting of at least two therapies
• stable enough medically and is capable and willing to participate in intensive therapy for a minimum of three hours per day, at least five days per week
• program is expected to result in significant therapeutic improvement over a clearly defined period of time
• program is individualized and documentation outlines quantifiable, attainable treatment goals
• treatment is required in an inpatient facility because the individual requires: 1) 24-hour a day access to a registered nurse with specialized training in rehabilitation care; 2) frequent rehabilitation team assessment and intervention due to the potential risk of significant change in physical or medical status; and 3) an intensity, frequency and duration as to make it impractical for the individual to receive services in a less intense care setting.

Our problem appears to be that my mother has evidence in the record that she could not sustain the intense 3-hr a day therapy schedule, her progress is not considered significant, and the professionals have failed to indicate attainable goals for her.

A sub-acute facility, however, is more like a nursing home with therapy. Only 2 hours of therapy are required each day, and only steady progress towards those goals is required. When I arrived at the hospital, I ran into the resident on my way to my mother’s room. I talked to her about the situation, and she was thrilled to hear that we could take mom to a sub-acute rehabilitation facility, and felt that was a more appropriate option. I again explained that I felt another week or so at the acute level was warranted, especially now that she was making it through all of her therapy sessions each day and starting to make progress. She agreed, and went to talk to the rest of the team.

I helped my mother finish lunch and I read her the blog and your messages. My mom was so touched that her nurse had posted a message to her (and by the way, Donna, she keeps telling me that you owe her a foot massage). Our friend, Vivian, also arrived for a visit (she was at Hopkins for an appointment) and Elliot went to talk to her for a bit. I also received a message that our advocate would not be able to attend the meeting today – unfcortunate.

The team convened at 1:00 pm, and we heard their recommendations/explanations. I made our case for continued care at the acute level and discussed the importance of the proximity to the hospital at this point in my mother’s recovery. I understood from our meeting that the entire team was on board with getting another week for my mother and slowly working on identifying an appropriate transition to a sub-acute facility if this next week did not result in sufficient progress for her (or if she continued to find the 3 hours of therapy overwhelming).

The team, however, indicated that our insurance was the issue. We put their social worker in touch with our care coordinator at the insurance company, and then we waited. We waited for about four hours before they came back to us with an answer. We were down at radiation (which was quite late again), and I had just come out of the radiation room where my mother had asked me to come in with her and take a picture of her in her mask for you all to see. That is the picture of the day!

The social worker was sitting there in the waiting area, and she informed us that the insurance had denied the request to stay at the Hopkins rehab facility, but approved our request for a sub-acute rehab facility. She also told us that we needed to move mom in the morning! We were outraged…how can we possibly identify a new facility and move mom in less than 24 hours?

We got on the phone and started calling CIGNA, but the case manager has yet to call back. I will hopefully reach her in the morning. We have a list of sub-acute facilities, and we’ve received a few recommendations that we will check into. In the meantime, we intend to appeal the decision, and ask for more time to identify an appropriate location and create a transport plan. We are also going to make an argument that we need the extra time in the existing rehab facility to help my mother achieve some more goals…such as building sufficient strength to be transported back to the hospital for radiation by wheelchair.

So, we are seeking recommendations for a good nursing home/rehabilitation location close to Hopkins. My mother is not able to withstand a long transport at this time, and frankly, I’m not certain my family can handle the additional travel time either. Several of you have asked why not move her radiation treatment? Brain radiation is very specific…it is calibrated to a particular machine, the treatment plan is very specific, and it requires a special mask to be built. My mother would have to start radiation, build a new mask with far less sensitive equipment, and have the radiation done by people with much less expertise than Hopkins. Unlike radiation for some other types of cancer, the radiologist and the equipment truly do matter in the success of the treatment. Many other places would not even attempt radiation with my mother’s condition – it is just too advanced and too complicated.

So, today we return to battle – hopefully to secure another week to try and buy more time to build my mother’s strength to handle a stay at a sub-acute facility. We also have a GI consult today (and perhaps we can turn that into a new hospital stay and then she would be entitled to 2 more weeks after that stay in an acute rehabilitation facility). If we fail to win the appeal, we have to hope for 24-48 hours additional to effect the transfer to a sub-acute facility.

I am definitely worried about whether a sub-acute facility can handle my mother’s needs right now, and whether my mother is strong enough to handle the daily transport back to Hopkins for radiation. I wish there was an inpatient radiation option – my mother would certainly qualify. What a mess!

After fighting with the hospital and expressing our frustration to the doctors, I think we finally convinced the attending on the floor to go to battle for us for the next week. It may just be too little, too late, as the record they have created thus far has not been helpful. We arrived home well after 6:00…poor Megan! Miah was MISERABLE, he was cranking and crying, and just would not cooperate with her. To make matters worse, I think he has a cold – his nose was all stuffy and he sounded terrible. I don’t know how we can bring him to the hospital this weekend, but perhaps this cold will be short-lived.

We put the kids to bed, and my phone was ringing off the hook – thanks to all who called to give us some suggestions about facilities and find out how we are doing. We are frustrated, but hope today will give us better answers.

By training, I am a litigator. Before every court appearance or mediation, I used to mentally “arm” myself for battle. I would don my suit of armor by familiarizing myself with the facts, and fill my arsenal of weapons with arguments and legal supports. I would examine my suit of armor from the perspective of my opponents, scrutinizing my case for any chinks in the armor. I would consider how an opponent might deflect my weapon assaults, and deploy the best strategies to corner my opponents with the tools in my arsenal.

Tonight, I am preparing for battle again…but this time, I plan to battle the Rehabilitation Unit at Hopkins. We have a “family” meeting scheduled with the rehabilitation team for tomorrow at 1:00 pm to discuss my mother’s status in the unit. We have already been informed that they plan to recommend releasing her on Thursday morning – regardless of the fact that several therapists believe she has more room to progress, or that half of her rehab time was wasted on medical challenges, or that insurance is willing to pay for more time. We have already informed them that we plan to fight them. I get the sense that the doctor on the unit is of the mindset that “well, she is dying anyway, why bother with rehabilitation?” I have a call set up for tomorrow morning with my mother’s case manager at CIGNA, and we have recruited the help of a patient advocate from Hopkins. Wish us luck…this is one battle I do not want to lose, and I think they have no idea how tenacious and stubborn we Brodeys (and a particular Harkavy) can be when we are fighting for what we think is right.

Our day started off in the normal fashion…baby waking up around 8:20 (because my mom called just to say hello and the phone woke her up!) and Megan showing up at 9 and getting Micah out of bed. We got Micah ready quickly (he wouldn’t eat any breakfast) and off to Kidville they went to class. Elliot stayed home today because Megan needed to be out of here by 5, and I did not want to be rushed home.

I arrived at the hospital around 11:30 and my mom was finishing up her therapy. My father had arrived early that morning to meet with the social work and take care of a few odds and ends. My father and I both did some “lobbying” of the therapists to try and gauge whether they would recommend extending her rehab stay. I went to the last part of physical therapy with my mother, and she was really doing well. We worked on transfers, and I heard she did more walking and standing again today. She also worked on sitting up straight unsupported, and she was doing a fantastic job. She still needs more work on holding herself to midlline without listing to the left, but she has not been able to do hold herself that well since she arrived at Hopkins.

My mom made it back to her room around 12 and her stomach was hurting. I was impressed that she had been sitting in her wheelchair for over an hour and was still doing well. Unfortunately, she was again complaining of intestinal problems. All of the sudden, we realized it was 1:00 and my mom had not yet been picked up for radiation. We started to panic and run her down to radiation ourselves, but the nurse called down and learned that her appointment had been changed to 4:15.

At that time, we realized we had several hours left before radiation. My mother stayed in her wheelchair for another hour or so and then transferred back to the bed to relax for a while. Jeremy arrived around 3:00. My mother’s intestinal issues continued, and we asked to speak to the resident again. Initially, she seemed willing to help out. She went to speak to the attending physician, and he came into my mom’s room a few minutes later. He actually looked us in the eye and explained that my mom is not constipated, it was all in her head. My mom pointed out to him that, in fact, it was all in her ass, but he did not see the humor in the situation. He kept insisting that the problem was resolved and my mom was simply obsessing about her bowels for no good reason. We were pretty ticked at him, but he was quite convincing. Even Jeremy and I started to wonder if perhaps he was correct, but we still felt that they should be able to do something to relieve mom’s discomfort.

We realized that my mom’s ipod seems to have gone missing…either stolen or possibly thrown out by accident during one of the sheet changes. How unfortunate! We put them on the lookout for it, but I have a feeling it is long gone.

Dr. Olivi and his nurse, Dee, stopped by for a visit. We talked to them a bit about our rehab conundrum, and Dr. Olivi said he would put in a word recommending that my mother’s stay be extended since she lost a week with the brain swelling and intestinal issues. It is nice to know we have some champions.

At 4:15, it became evident that the hospital transport would not be arriving, so we walked mom down to radiation. When we got there, she was doubled over in pain, and the nurses there began to talk to her about her intestinal issues. They could not believe that the rehab doctor would not prescribe anything more than colace and senna for her. Their nurse coordinator decided to intervene by calling up to the rehab floor, and she said that they would call in different medication tomorrow if the doctor continued to refuse. At this point, Jeremy and I were fairly worked up and angry at the doctor – we just could not understand why they were not doing more. We will be asking what happened to the gastro consult we requested last week. Radiation was running way behind, and it was after 5 before they took her back. Thankfully, the appointment was fast, and about 7 minutes later, my mom was ready to head back to the room.

Dinner arrived as we returned, and my father got ready to leave. Dinner was chaotic – my mother started to eat before they took her blood sugar, and we could not get her to pay attention to what she was eating – she had ordered coconut shrimp, and she kept eating the shrimp tails and gagging on them, and she was not letting us remove the tails or help her out. Then the nurse arrived to try and take her blood sugar, and mom wouldn’t put down her fork to allow the nurse to do the stick. Her friends Roz and Sharon both called in the midst of the chaos, and mom took her bloody hand and tried to grab the phone. The nurse could not get a blood sugar reading and my mom was making a mess!! She then became confused about where the phone was (Jeremy was holding it up and mom seemed to think she had it in her hand). Unfortunately, we had to tell both of them that mom couldn’t talk – it was just too much commotion at once.

Jeremy stayed for most of dinner before he had to leave, and I left after she finished her dinner and returned the calls to Sharon and Roz. I arrived home to find that our cousin, Francine, had delivered ANOTHER dinner – the last one, I believe. Micah did a great job eating the food (although it was hard to tell if he was wearing more than he ate). I was starving and scarfed the food quickly. We played with the children for a while, bathed them both and put them to bed.

Ever since then, I’ve been preparing for battle tomorrow. Elliot reached out to the hospital advocate who helped us obtain permission to bring the children into the hospital, and she agreed to join us tomorrow as our patient advocate. My father sent me the information for the CIGNA case manager, and I will speak to her in the morning. I’ve also been planning out our arguments and trying to consider other alternatives if this does not work out for us.

We are starting to line up caretakers, and we *may* have a place lined up for Baltimore. We are working on identifying a wheelchair transport company. I may also see if, on Dr. Olivi’s recommendation, we could put mom in a different rehab, but we are not sure if we could transport her back to Hopkins for radiation. Hopefully, we’ll have a bit more time at Hopkins, but we’ll see what happens in the morning. Wish us luck! We need an army of supporters for this battle.

My father called tonight…apparently my mother is having serious problems with her intestines again, and needed to be disimpacted again. That rehab doctor is a complete idiot!! We’ll be battling with him, too, tomorrow.

Today was a good day for mom…but kind of a crappy day for me. Maya woke up at 7:00 (she broke out of her swaddle and got upset about it), so I brought her into bed with us. She immediately fell back asleep, and the children slept until nearly 9:30! I suddenly realized that Micah had his first swim class this morning, so we got ready and headed off to class. Elliot and I had planned to switch off in the pool with Micah so we could both enjoy the experience, but the instructors only allowed one of us to be present on the pool deck. Naturally, I asked to do class today with Micah (and promised Elliot could do next week). Micah was great! He was not afraid of the water, he played, he floated, he put his face in the water and he blew bubbles! He was adorable in class, and I think he loved the experience.

We came home from the pool, showered and grabbed lunch before heading up to the hospital. Traffic was heavy (probably due to the game), and I think it was a little after 2 before we arrived. My father was sitting with mom, and we joined her. She seemed to be feeling better today – her stomach issues seemed to be under control, her appetite had returned, and she just seemed a bit more relaxed. She had already done all of her therapy for the day and she was relaxing.

Mom enjoyed some time with Delicious and Micah, and we all floated in and out of her room, alternating chatting with her and giving her time to relax. Elliot discovered that the children’s building has a HUGE playground space outside just down the hall from where we’ve been visiting. We only wish we learned about it before our break fast celebration – the kids would have LOVED the playground. We are hoping to gain access to it another day when we bring the kids to the hospital. This afternoon, she had a group of visitors…Gail, Steven, Suellen and Greg! She had a wonderful visit with them – she was in great spirits, she smiled, she laughed, and she traded barbs with them.

At one point, we were talking, and Mom looked at me and said, “I’m not ready to leave.” I looked back and said, “Do you mean rehab?” She shook her head no. “Do you mean the hospital?” Again, she shook her head no and replied, “I mean all of this. I’m not ready to leave everything.” My eyes welled up as I realized what she was telling me, and I looked at her and said, “So don’t. Be one of those stories we hear about, and don’t go anywhere.”

The best news of today? The PT from today came by to talk to us, and she said that Mom did really well during physical therapy – she worked much longer, she stood up, she did a bunch of transfers, and she walked the bars a bunch of times. According to this therapist, she thinks Mom has a lot of strength on her left side and the ability to make much more progress! I was surprised, because she was the first person offering us some encouragement. I told her that I understood Mom would be released on Wednesday for lack of progress, and she was surprised. She was recommending that Mom’s stay be extended!

I asked her what she felt Mom should be able to do, and she said that she felt Mom should be able to walk *some* again (with assistance, but be able to walk within the house from point A to point B, or walk from a wheelchair to the car, or walk from the bathroom door to a toilet or a shower). She felt that mom should be strong enough to sit up and use a shower chair safely, too. I was THRILLED when I heard all of that – we had previously been told that all of those things were unlikely to happen. If Mom can accomplish those goals, it will be much easier for her to do things like travel.

Naturally, I asked this therapist to intervene with the other therapists and make her recommendations. If this trend continues the next day or two, we may be able to extend her stay for at least another week. My hope is to maximize the time she is in the hospital for radiation and chemo and get her as much therapy time as possible to make her as strong as possible. I know that home therapy is never as good as inpatient therapy, and the more things my mother can accomplish now while she is inpatient, the better for her in the long run.

We left the hospital around 6:00, and my Dad, Suellen, Gail, Greg and Steven were still there. They planned to go out to dinner together after Mom finished her dinner. We arrived home, and our friends Heather and Brad stopped by and brought dinner for the 4 of us. They stayed for a few hours to catch up, and we put the children to sleep. It was a lovely evening.

So, why was my day horrible? As I suspected, I am losing my business. I opened my email tonight to find a note from a client who just terminated my contract. I sent him a note 2 weeks ago telling him what was happening and asking for an extension of time to do a project. His response? Silence for the past two weeks, and a letter of termination today. Just as I was hopeful that I could start getting work done over the next week or two. And this was my most important client…without their support, I just don’t see how I can continue. I’ve been working with this client for almost 9 years now. Unbelievable.

Micah is screaming in his crib at 5:30 am…I need to go see if he is okay (or perhaps he’ll fall back to sleep on his own). So rare when he wakes up like this!

Tonight, we celebrated break fast at Hopkins with my mother, and I am overwhelmed with gratitude for the people who made it possible. The list is far too many to name everyone, but it includes the following: Suzette, Sheila, Arleen, Diane, Elaine, Elliot, Jen, Dad, our guests, and so many on the Hopkins staff (Leo and Patrice from food services; my mom’s nurse, Donna; the security guards who assisted us today; and the administrators who gave us permission to use the space and bring in children). As you can see from the smile on my mother’s face, the night was perfect…well, *almost* perfect, and I say *almost* only because there were a few people unable to be there with us. There are far too many pictures to post them here – I will have to create a photo album online somewhere and provide the link later.

Yom Kippur is perhaps the holiest day in the Jewish year. It is known as the Day of Atonement…the day when Jews all over the world fast and seek forgiveness from those in our lives and from G-d in order to atone for our sins. According to Jewish tradition, it is also the day in which our fate for the upcoming year is “sealed.” We ask for ourselves and those in our lives to be “sealed for a good and happy new year” as we wish for good health, prosperity, happiness and love.

During services, we list a variety of sins (44, I believe) that we may have committed throughout the year (such as: under duress or willingly, by hard-heartedness, with an utterance of the lips, by deceipt, by improper thoughts, by disrespect, etc.) and ask for G-d to “forgive us, pardon us, grant us atonement.” We also recite a prayer that lays out sins from A to Z for which we seek forgiveness for ourselves and our community:

ASHAMNU: we have been guilty.

BAGADNU: we have betrayed.

GAZALNU: we have stolen.

DIBARNU DOFI: we have spoken falsely.

HE’EVINU: we have caused others to sin.

V’HIRSHANU: we have caused others to do evil.

ZADNU: we have had evil hearts.

CHAMASNU: we have become violent.

TAFALNU SHEQER: we have attached lies.

YA’ATZNU RA: we have advised evil.

KIZAVNU: we have lied.

LATZNU: we have scoffed.

MARADNU: we have rebelled.

NI’ATZNU: we have been scornful.

SARARNU: we have been disobedient.

AVINU: we have been perverse, that is, intentionally doing a sin to fulfill an appetite.

PASHANU: we have transgressed.

TZARARNU: we have persecuted.

KISHINU OREF: we have been stiff-necked.

RASHANU: we have been lawless.

SHICHATNU: we have corrupted

TIAVNU: we have committed abominations.

TAINU: we have gone astray.

TITANU: we have been led astray.

SARNU: we have turned away from Your mitzvot.

At the conclusion of a long day of fasting, introspection and prayer, it is tradition to break the fast with friends and family. Generally, people break fast with light dairy foods…bagels, cream cheese, blintzes…and usually some sweet foods to represent a sweet new year.

I am at a loss to even attempt to describe what tonight meant for me and my family. I have previously mentioned that Yom Kippur has always felt like my mom’s holiday. For our family, the tradition of breaking fast is marked by the gathering of our close friends and immediate family in my parents’ home with all of these special holiday foods. Blintzes (in essence, a sweet-cheese filled crepe) are a traditional food, and we have been breaking fast with homemade blintzes (a recipe passed down from my great-grandmother to my grandmother to my mother to me). We eat, we laugh, we talk, we enjoy, we catch up, and we grow together. It is an opportunity for all of us to see and be together, to look backwards and reminisce about our childhood and to look forward to the future as our families grow together.

It was amazing for all of our families to gather together again, and even more incredible for us to introduce our children (some to each other for the first time) to our tradition. In attendance tonight were: The Levines/Adlers (Joel, Suzette, Seth, Heather, Jon, Jake, Alex and Dylan), The Lichters (Sheila, Les, Erik, Annie, Stella, Nina, and baby-boy-to-be…we missed you, Jack, Jenny, Ethan and Ryan), The Wexlers/Holders (Elaine, Robin, Emily, Liza, Eli and Reed – thank you so much for being there…we know how difficult it was and it meant so much to us), The Breslows (Diane and Joey…we missed you, MB4), The Luchs (Arleen and Lorin – it meant so much that you broke with your tradition and joined us early today…and thanks to Rayna & Brandon (and baby boy-to-be Leo) for “virtually” attending via Skype and to Stu for calling in…we missed you attending in person!), and last, but certainly not least, the Brodeys/Harkavys (Mom, Dad, me, Elliot, Micah, Maya, Jeremy, Jen, Paige and Peyton). And to the Wineburgs…we missed you!

I cannot tell you how much it meant to all of us to have everyone together again. Just to see all of our children together, growing up, and playing was incredible. It gave my mother (and all of us) a chance to meet a few of the babies she had not previously had a chance to see. At one point, my mom joked that it was like attending her own wake…and in many ways, it was. It was the gathering of our “family” for an opportunity to celebrate her life and tell her how much we love her in the best way we know how. It was important for all of us to have tonight together, and I think it was important for my mother, too. There is something both beautiful and comforting about being with close friends and family to honor a tradition.

I was up until almost 8 in the morning making blintzes (I guess that is what happens when you don’t start cooking until 3 am, right?), and the kids did not wake up until 9:00 or so. My father woke up bright and early to run and pick up bagels for the event (I forgot to pre-order them). Elliot left for services around 10:30, my father arrived to join him a bit later, and the babysitter arrived at 11 to watch Micah while Maya and I went up to visit my mother at the hospital. Traffic was heavy, and I did not think I would ever get to the hospital! During my trip, I called Patrice from food services to coordinate our plans for the day. When I arrived at Hopkins, I was faced with new heightened security at the entrance (in response to the shooting a few days ago). I was not supposed to enter through the garage, but the security guard took pity on me and agreed to call for an escort so that I could drop the food off at the Rehab wing and walk through the hospital to the main entrance to check in instead of walking around the outside of the building with the baby and all the food.

After checking in, I sat with my mother while she finished lunch. She seemed a bit sleepy, but she was in much less discomfort today. I read her the blog and your messages, and we talked…some of it bittersweet. My mom again expressed how shocking this situation is, and sadness because she thought she had longevity on her side with our family history. She also said that she can hear herself sounding like Grammy used to, and that she knows that no matter what happens, things will never go back to how they were before. We talked about her desire to travel, and I said that the only limitation was her strength.

Mom seemed to tolerate day #2 of chemo quite well again – no apparent side effects. Mom took some time to kiss little Miss Maya, and we had a wonderful conversation with my mom’s nurse, Donna. Donna was amazing today. She decided to head over to the dining room early and try and make it special for us…she took sheets to cover the tables and brought over all the flowers from mom’s room to decorate the space for us. Thank you, Donna, for adding so much to this event for us!

At 3:30, I met with Patrice from food services. She brought us a food cart, promised to return at 4:00 with a hot box for our food, arranged to meet with us at 4:30 to cook the blintzes and deliver the coffee and water for our use. While I was talking to Patrice, I ran into Melissa, the recreational therapist. We talked about some games that would benefit my mother after she leaves the hospital, and a few assistive devices for doing her activities (she showed me a card holder and a device to attach to my mother’s hand to help with crocheting).

My father and Elliot arrived around 3:40 pm with bagels, orange juice, blintzes and Micah in tow. We unloaded the car (and the security guard let them in once he realized they already had bracelets from the front desk and were with me). While we were unloading, I got a text that Suzette and Sheila had arrived, so I sent Elliot downstairs with the food carts to help unload their cars, too.

Sheila and Suzette immediately went to work arranging the room and setting up all the food. They did an incredible job. We served all the food buffet-style (we used the therapy table, a food cart, and an air hockey table for the food). Elliot and I left at 4:30 to go with Patrice to the kitchen to cook the blintzes. I stayed there for about 30 minutes (it took a while to prep the blintzes for cooking and get the oven warmed up). Elliot took a break to meet Lorin so they could conduct the concluding service for Yom Kippur (Neilah), and when he returned, I went back upstairs to nurse the baby while he and Patrice plated up the blintzes.

When I returned to the dining room, everyone was there and all the food was set up on the tables. The room looked incredible, and it was fantastic to see everyone together. Elliot and Patrice came up with the blintzes a bit later, and we brought my mother in to start the celebration.

Despite the fact that we held the event at Hopkins, we did it exactly as my mother always did things. I cannot even describe the quantity of food on the table – you’ll have to wait and see the pictures. We had cheese plates, egg salad, tuna fish, blintzes, kugel, bagels, cream cheese, lox, whitefish salad, (Mona, your herring was dearly missed), fruit salad, and so many desserts! Perhaps the biggest surprise…the shrimp and chicken egg rolls. Yes, I did say shrimp and chicken egg rolls…not exactly a traditional break fast food. A few of my mom’s co-workers arrived for a visit as we were setting up, and Chi brought homemade eggrolls for my mom!! It was a wonderful visit, and my mom is always so happy to see her Library family. All I can say is that my mom was SOOO excited to eat the egg rolls (and all I heard were rave reviews from everyone who tasted them) and we were so glad that they were able to join our celebration for a little while.

Towards the end of our evening, we invited the rest of the staff from the Rehab floor to come join us and eat. Several of them did take advantage of our invitation, and we also left them with all of our leftover desserts. As the evening wrapped up, the ladies were hard at work wrapping up all the food and dividing up the leftovers.

For me, it was impressive how well all of our children behaved. They all seemed to have a wonderful time playing, both in the courtyard and in the family dining room and lounge. We only had 2 minor incidents with the children (at least that I saw)…Micah scared Nina early in the night (he yelled at her and pushed her, and all she did was look at him!) and Stella fell and scraped her knees playing in the courtyard. The Rehab staff gave us some saline, gauze and bandaids, and we did our best to patch her up. Some of the children started to melt down around 7:15, but most made it to the end around 8:00. We left around 8:30, and made great time getting home.

My Dad called the hospital and Mom was asleep and resting comfortably as of 11:00, I believe. I hope that she has a peaceful night, and we will be back up there tomorrow. I forgot to double check my mother’s therapy schedule tomorrow, but she does have a full day of therapy. If you are thinking of coming up for a visit, just double check with us during the day to make sure you arrive at a good time!

So, thank you, again, to all who made tonight possible. It is filled with wonderful new memories for us, and we are all so moved by the massive effort that was put forth by all of you to just be there at the hospital with us. My mother said the evening was perfect, so for me, it was worth everything. May you all be sealed in the Book of Life for a good, sweet, happy, healthy and prosperous year.

For once, I am going to do my best to keep this journal entry short and perhaps a little sweet. Tonight I am up to my eyeballs in blintzes in preparation for our break fast at the hospital tomorrow night. Yes, I am *just* making them less than 24 hours before the big event. Yes, my mother would be ready to strangle me for procrastinating if she was doing the coordinating.

There are many reasons I’ve been procrastinating (aside from the fact that I *always* leave everything to the last minute)…and the biggest is probably logistics. Normally, we make and freeze the blintzes in advance, then set them out all day on Yom Kippur to defrost and pop them into the oven as people are arriving. Right now, I have no freezer space. What little we have is filled with food people have been bringing and tons of breast milk. I tried to figure out how to make them, transport them to my parents’ house for freezing, and then get them up to the hospital to defrost and bake…and I realized it would just be easier to make them and bring them fresh to the hospital for cooking. So, that is my plan for tomorrow.

Many of you are probably scratching your heads and wondering, “Why not just buy them?” Well, the biggest reason is tradition. Break fast has *always* been my mom’s holiday. We have a core group of friends that we have always spent the holidays with (Rosh Hashana, Yom Kippur, Passover, and often Thanksgiving, too), and EVERY year since I was born, break fast has been at my parents’ house. Our menu ALWAYS includes blintzes, applesauce, tuna fish, bagels, lox, cream cheese, kugel, jello mold, fruit, and an assortment of desserts. My mom always made the blintzes and applesauce from scratch, and everyone else who came brought their part of the meal. When all of us “kids” grew up and went off to college, it was the one holiday we usually made it a point to all come back home. I think we all just found it special, and we loved the food and the atmosphere. I think Yom Kippur was always my mom’s favorite of the holidays because she loved to host break fast.

For the past few years, however, since all of the “kids” grew up to have kids of our own, our break fast celebration has….well, dwindled. In fact, last year was the first year that it was just our family. No one else. It made my mom sad that our long-standing tradition had faltered. She knew that people were busy with their families, but she always imagined that we would continue the tradition with the next generation of our families, and it made her sad to think that we were all going in different directions…drifting apart. She even thought that maybe no one cared.

So, this year, in honor of my mother, we are doing break fast the “old fashioned” way…except at Johns Hopkins. We reserved the family lounge/dining area there, and we’ll probably take over the courtyard, too. Almost everyone is coming again (except for the Wineburgs, who are no longer local, and the Luchs children, who live out in LA…although they will be attending via Skype). Mona – I think my mom will miss your herring.

Today was a strange day. I arrived at the hospital before 12, and my mom was once again miserable. I wish they could get her intestinal issues in order! She told me she had a miserable night again, and she was very uncomfortable again. I helped her with lunch and showed her the new phone. She was doing really well with it today, and I’m hoping she’ll be able to better answer and make calls. The phone talks…it reads out the menus, and announces all the buttons that are pushed. It also allows for voice command operation and dialing, and I think that feature (and the speaker phone) will be the most important for my mom.

At 1:00, the nurses brought in her chemo pill, and at 2:00, we went down for radiation. They allowed us to accompany mom, and she was a bit nervous. Of course, the minute we arrived in radiology, her stomach issues kicked into high gear, and that was a bit complicated to maneuver. Once we had my mom settled in, it only took 30 minutes for them to check the scans and do her first treatment. We returned to her room around 4:00 pm, and she was feeling fine. As far as we can tell, she had no reaction to the chemo today, and it will probably be a little while before we figure out how she will react to the radiation.

When we returned to the room, she rested for a bit and had to deal with more stomach issues. Jeremy and I had a series of discussions with the doctors about my mother’s stomach issues. They seem to think that we should “stay the course” with the current treatment (or lack thereof), but we are worried about how my mother is feeling. I just think she is getting worse, not better, and that they should be doing more to help. The oncologist thought we should try some different medications, but the rehab doctor refused. I’m at a loss – we have requested a gastro consult, but that won’t happen until Monday or Tuesday, and I’m just worried about my mom getting through the weekend and being comfortable. She would be in much better shape if we could work out these intestinal problems!

Her dinner arrived around 6 along with guests from work…Ruby and Gonzalo! My mom was so excited that Ruby brought along her couscous…my mom’s favorite of Ruby’s recipes. She has been telling me about this couscous for the longest time, and I finally had a chance to taste it! Thank you, Ruby. She had a lovely visit chatting with them for about an hour or so.

We all said our goodbyes, and I left for the day. I am not certain how much longer my father stayed, but I made it home around 8:00 and sent the babysitter on her way. I hung out with the children until Elliot got home from services at 9:30 (very late for Micah to go to bed, but I just couldn’t figure out how to manage both kids and put Micah to sleep by myself). Maya fell asleep shortly thereafter, and I took a nap before waking up to make blintzes, pump, and blog.

So…that is the update for the day. Day 1 of chemo and radiation down. I’m looking forward to spending the day with everyone to break fast.

Today was…insane. Micah woke up a little before 9. I probably should have gone in to get him up earlier, but I was so comfortable lounging in bed. Maya woke up right at nine as Megan was arriving, and I nursed her while Elliot took a shower and Megan fed Micah breakfast and dressed him. I quickly showered and dressed, and Elliot and I bolted out the door at 9:25 and raced over to Beth El for Micah’s first 1/2 day at preschool.

Preschool went well for Micah…except he was out of sorts. He is definitely teething again (molars this time), and he is missing me, but his behavior was a bit out of line. He screamed a few times at one of the other kids when she got too close to him (and he shoved her and hit her). We tried to carefully monitor him and intervene before he started to fight with the other kids, but he was a handful. He tried to do a little sharing with another girl (my friend’s daughter, Samantha), but he screamed at her a few times and resisted sharing. He threw a few other temper tantrums when he didn’t want to sit in circle time, and he resisted snack time (until he realized there was a cup of water he could dump all over himself). I’m definitely concerned about his behavior, and hope that we can work on it over the next few weeks.

After class ended, we briefly stopped by the preschool breakfast. Micah was having a great time running and playing with another boy there. When it was time to go, Micah kept telling me he did not want to leave, so I finally said “I’m leaving” and started to walk to the door. Micah FLIPPED out – he screamed, started crying, chased after me, and yelled something that sounded like “Mommy, no go!” I realized that I’ve been leaving him so often lately that even the threat of leaving at the synagogue was extremely upsetting to him. My poor little boy.

Elliot and I brought Micah home, and Micah and Megan headed out for a few hours. I hired Megan through her best friend, Christin (our other babysitter), and Christin’s mother Laura babysit’s my friend’s children on Thursdays. Megan decided to bring Micah over to Laura’s house to play with Merrick and Addie for a few hours. Apparently, Micah had a great time today chasing after Merrick…he seems to be well behaved when playing with older children, but not so much with children his own age.

After Micah and Megan left, Elliot, Maya and I left for Hopkins. About 5 minutes into our trip, Elliot’s cell phone rang, and it was our niece, Melissa, telling us about reports that there was a gunman at Hopkins who shot a doctor. We were naturally worried about my mom, but we decided to continue on our drive while we searched for more information. We called and alerted my father, and we called my brother to check into some information online. Elliot also got on the phone and called his Red Cross contacts. From what we could tell, the shooter was in the building adjacent to my mom’s, on the 8th floor. We heard he was contained (barricaded into a room), and we were hopeful that we would be able to get into the hospital to see my mother. I spent most of the trip to Hopkins fielding phone calls about the situation there, trying to get information, and answering text messages.

When we arrived at Hopkins, streets around the hospital were closed, the hospital was on lockdown, and parking was a nightmare since most of the lots were closed. We finally found some street parking, and we set about getting some information. In the process, Elliot was interviewed by WBAL radio, giving the “human” side of the story. We ran into my mother’s rehab doctor and talked to him. He told us that the Rehab wing was secure but not evacuated, and he helped us reach the front desk. After speaking to my mother’s nurse, I was able to call her room directly and speak to her. I let her know that we were all okay, that we were at the hospital, but unable to get inside to see her.

My mom informed me that she was miserable and in pain again, which made it even worse that we were stuck outside. They had to perform another disimpaction, and my mother told me it was excruciatingly painful. After I got off the phone with her, I called my father again, and learned he was only a few minutes away. We arranged to meet near one of the blockades.

About 20 minutes later, we found my father. He introduced Elliot to a WBAL News Channel 11 reporter, and Elliot was interviewed on air! His 15 minutes of fame in the middle of all this mess. Actually, he was on a second time, breaking the news (from a police twitter) that the gunman shot himself and his mother. For those of you on Facebook, we have the first video interview posted there. We spent the next few hours stuck outside, with varying reports about what was going on inside. Here is what we discerned over the course of the day: a man shot a doctor after arguing with him. Apparently, the doctor operated on his mother, and she was paralyzed as a result of the surgery. He was loose in the hospital, and ended up barricading himself on the 8th floor (we think in his mother’s room). Ultimately, he shot his mother and shot himself. On a side note, how awful is that story? I just don’t understand some people…if you are angry with a doctor, then go after their medical license. Shooting the doctor did not help his mother in any way, and it certainly isn’t going to teach that doctor a lesson or hurt his career, if, in fact, he did something wrong. And killing his mother? She went from paralyzed to dead because of him! Even if she lived, once he shot the doctor, he made it impossible for him to be there for his mother. For the life of me, I cannot figure out how ending their lives in any way helped. The story is just tragic, and I wish there wasn’t so much evil in the world.

Within ten minutes, they started to ease up on the barricades, and we were able to get around and inside the hospital. It was nearly 3:00 when we finally made it up to my mom’s room. She immediately asked me to read the blog and your messages – I think that might be her favorite part of the day. Zena – she groans at your jokes of the day…but she absolutely pays attention to every word I read! By the way, I’ve apparently been confused about some of the gifts that have been sent to the hospital. The beautiful plant I keep mentioning is from “the kids” – Heather & Jon, Seth, Jack & Jenny, Erik & Annie, and Matt & Marisa – a group of my mom’s friends’ children. I know that several of you read this blog – and I just wanted to say how much she loves that plant. So, apparently I’m the one who is confused!

We found my mother extremely miserable and in pain. It has been a really rough week for her. We helped her eat lunch, and then PT showed up again. They wanted to work with us on transfers again. We did one transfer from the bed to the wheelchair, and it went well, but my mother was in too much pain. We transferred her back to bed, and then she asked to be transferred to the commode. When we finally got her back in bed, she was exhausted and did not want to do any more transfers or therapy.

At that point, Elliot had to leave to get home in time for the babysitter, and I decided to stay longer to be with my mother. My father and I stayed with my mom while she napped and then through dinner. We did learn that she will be starting radiation and chemo in the morning. And so it begins. My mom became very quiet after they shared this news with us…I think she is scared. She is worried about the side effects, and worried that she will be even more miserable than she is now. Actually, when we were talking about it, my father joked that she shouldn’t worry, she wouldn’t be forgetting that she was married to him. I joked back that there was no chemo or radiation in the world strong enough to eradicate some memories! I hope that radiation and chemo go well for her, but I am worried for her, too.

My father and I left around 7:30, and we drove back together. We talked on the way home…about my mother and the future. It was sad, but it was a good conversation. Once we returned to Bethesda, we stopped off at a Verizon store to pick out a new phone for my mother. I’m hoping that it will make things easier for mom, and I will bring it up to her in the morning. My dad came back to our house and joined us for a pizza dinner, once again, compliments of my cousin, Francine. Micah was still awake when we got home, and he was just being cute and playful. My father left after dinner, and we managed to put both of the kids to bed relatively early. I plan to play with my mom’s phone a bit more tonight to learn the features and make sure I can explain to my mom how to use it.

My father called a little while ago – apparently, my mother is having a very rough night. I sure hope she feels better soon – she needs her rest tonight. Wish us luck tomorrow! I hope my mom can handle the radiation and chemo without incident, because I’m just not certain she can take much more. And is it too much to ask for a day without any crazy gunman incidents, too? I don’t want anything keeping me away from Mom tomorrow when she needs us.

So…another emotionally draining day, filled with drama, hours of being trapped outside the hospital and unable to get to my mom, and tons of tension and worry. We are all a little nervous about tomorrow, too, but I hope we can get through it without any problems.

Every night as I sit down to write, I struggle with balancing my need to be honest and share the truth about our situation and my feelings against my knowledge that so many people will be reading my thoughts and that I will be reading these entries to my mother. I worry about dumping too much truth, especially when so many want to hear good and positive things. I also worry about reading my words to her and causing her pain or upset over the things I say. Normally, I would give nothing but complete truth and honesty to my mother, even if it hurts. It is so hard to do that now when she doesn’t need my thoughts and upset weighing her down. I also have a desire to protect Mom’s dignity, and the truth of the situation isn’t always pretty.

Today was one of those days…not exactly pretty. Micah woke up on the early side around 7:45 this morning, so I never did make it back to bed for a nap. I waited until nearly 8:20 to go into his room, and Micah was in LOUD mode. I kept trying to quiet him down, but he just wanted to yell “Mama! Dada? Baby? Sit down!” over and over again. I finally picked him up and tried to pull him onto the glider with me, but he decided he needed to be free, and he made a run for our bedroom yelling “Daddy!” The minute he got to our room, he grabbed Elliot’s glasses from the night stand and handed them to Elliot. He ran around to my side of the bed and tried to climb up (but was frustrated because I had moved the doggy stairs away recently). So I scooped him up, kissed his cute little belly, and plopped him onto the bed. Micah quickly began his ritual of covering himself with pillows while shouting “night night.” He then looked across the room, noticed Maya in her bassinet, and started screaming “Baby!” We tried to quiet him down, but to no avail. Naturally, Maya was awake within a few minutes of Micah’s appearance. I quickly grabbed the baby, unwrapped her swaddle, and crawled into bed with Micah and Elliot to nurse her.

After a while, it was getting too difficult to balance Micah’s rambunctious energy with a nursing baby, so Elliot got up and took him downstairs to start breakfast. Megan arrived promptly at 9, and Elliot came upstairs to ask if Micah had a Kidville class for the day. I carefully transferred the baby to the bed and ran downstairs to check our new class schedule, and realized that Micah had a 10:15 gym class. I helped Megan finish up breakfast and get Micah dressed and out the door by 10. I just realized that I never even asked Megan how Micah enjoyed class today.

While Megan had Micah at class, Elliot and I got ourselves dressed and ready and left with Maya for Hopkins. I had hoped to go visit a friend before leaving for the hospital, but I realized I did not have enough time because I needed to be home early from the hospital today so Megan could leave for her second job at 5. I brought my computer with me today…but never even managed to turn it on, let alone do any work.

We arrived at the hospital to find my mother in pain and uncomfortable again. It is so frustrating to watch my mother go through this and not be able to help! My mom’s regular nurse, Donna, was off today, so my mother was feeling a bit out of sorts and alone. She was waiting for her nurse to come in and help her out, so I stepped out to the nurse’s station to make sure the nurse was on her way. I also requested that the doctor come in to talk.

While we waited, I held my mother’s hand and stroked her hair. I brought “Delicious” in close for lots of hugs and kisses, and I talked my mother through relaxing and breathing to try and relieve some of her discomfort. We were there for over an hour before the doctor finally came in to see us. She was quite kind, and Elliot and I asked all kinds of questions about why my mother was still in this kind of pain after nearly a week. She explained that the scan last night showed that my mother still had an intestinal blockage…in short, really horrible constipation. She discussed what actions they were taking to relieve my mother’s discomfort, and then she told me that she hoped the new medications would help my mother.

After speaking to the doctor, my mother’s food tray arrived. She asked for Elliot to make her turkey rolls (he apparently rolled her turkey and spread the perfect amount of Russian dressing the other day, and she wanted him to do it again). She actually ate fairly well – she had about half of the turkey and the bread, a few of the green beans, some soup and some fruit.

My father arrived a little while later while my mother was still in pain. She was squeezing his hand, and we tried more kisses from Delicious, but nothing was working. Then, the physical therapist arrived, and we decided to use the time to work on transfers. Because my mother was so uncomfortable, Molli (the PT) decided to help us try a transfer to the commode and practice the technique. Elliot left the room with Maya, and my father and I stayed behind to help and learn.

The reality of the situation is that my mother needs a lot of help right now. She is a tiny little thing, but it is definitely a huge challenge for us to help her even do basic things like use the commode. The process is frustrating, uncomfortable and exhausting for my mother, and frankly, not exactly easy for us to handle either. I think we all hoped that my mother would regain the strength she had pre-surgery, but that just has not happened, and at this point, it is unlikely to happen.

After we finished the transfer to the commode and back, my mother was simply exhausted, but feeling much better. We decided to transfer her to the wheelchair and take her out to the courtyard for a brief visit outside while they changed my mother’s sheets. Unfortunately, my mother was just too exhausted to stay outside in the wheelchair for long, and within 20 minutes, she was insisting that she needed to go back to the room and get in bed. I think some of it was exhaustion, but I also think some of it is fear. I think she feels safest in bed right now, and it pains me to see my mother so fearful.

I think the realization of how much help my mother needs right now really struck me today. After our little visit in the courtyard, I definitely broke down. I called my brother to try and talk through some of my concerns, but I was also afraid to be too graphic with him. I’m worried that we will not be able to manage my mother at home with just a single home health aide. Our training session today really set me off on a tailspin, especially as I realized how much will likely fall on my plate. I am worried about how that must sound…it isn’t that I don’t want to be there, but I am worried about how I will physically manage it, and I am also worried about balancing the other things in my life. I need to be there for the children and my mother, but I also need to be able to get away and get out of the house sometimes, too, and if it takes 3 people just to help my mother use the commode, how can we make that work? It is one thing to do for weeks, but what if my mother actually has 6 months or a year or more left? Can we really manage and live this way?

I finally confronted my father this afternoon and told him that I really needed to talk about some realities and start some planning with him because I’m scared. He initially tried to brush me off, but I think the reality of today’s practice run had him thinking a bit, too. I brought up some really tough subjects…like quality of life for my mother, and treatment options, and whether we are making the right choices. We discussed support care, and we talked about options outside of the house, and how we can make things work in the house. We then went in to talk to my mother about some of our concerns, and what the options were for her. She was clear that she does want to try both radiation and chemo because they are her only chance at some additional time. She said she is worried, too, about managing things at home. We decided not to take the discussion any further right now, because we really need to see how my mother (and us) handle the next few weeks before we figure out what is next.

I still did not feel like we had resolved anything about how we will handle things. It has become clear from the doctors and the therapists that they are all recommending my mother be released from rehab sooner than later because she is not making enough progress. They have started training us, and my concern is that they will try and release her this week before she can even begin treatment. We are nowhere near ready for that to happen. I told my father we need to find out more information about hiring caretakers…we need to pick the company, or identify a person, and figure out how long it will take from the time we first contact them until we can have someone start working for us. I feel like we need to be prepared – ready to jump in and “pull the trigger” at any time as soon as we learn that mom is being released.

While my mother was napping, Jeremy arrived, and then one of the occupational therapists showed up to visit with Maya before doing therapy. Jeremy, my father, Elliot and I all sat down with her, and we expressed our concerns about managing at home. She gave some honest recommendations, and said they would work with us on trying to simplify some procedures and make some of the tasks (especially bathroom and bathing) more manageable. That helped, but I am still worried about what lies ahead.

Elliot and I had to run out the door in the middle of our discussion with the OT to try and race back in time for the babysitter. I hated leaving like that. Naturally, traffic was horrible and we were running late. I ended up calling my friend Laurie to see if she could get to our house before us so the babysitter could leave on time. She bent over backwards to make that happen, and managed to get there a little after 5. Thank you, Laurie, for racing around and putting yourself out for those 15 minutes – it really meant a lot to me, and I know it was a huge inconvenience. Elliot drove like a crazy person (I think he ran a few red lights and nearly got us killed a few times) and we made it home around 5:20 or so. I think on days when Megan needs to be at work, Elliot has to stay home because we just cannot seem to get back in time from the hospital, and I hate feeling pressured to leave when there are things happening at the hospital.

When I got home, I texted with Jeremy a bit. He said that he and my father had practiced a transfer to the wheelchair using a special transfer board, and then Jeremy acknowledged that Mom is a bit heavier to move than you’d think just from looking at her. I’m much less worried about the transfers to the bed, couch and wheelchair – Elliot can certainly help with all of that. I think my biggest fear is managing the personal care part of things, and right now, that is a challenge.

Once again, my cousin Francine sent over dinner for us…this time, Chinese food! Elliot and I had quite a feast (Francine managed to order all of my favorite items), and even Micah did some eating…and a little throwing. My mother called at 6:45 to say goodnight, and we had a little chat. She said she was feeling fine, and I was glad to hear it. My father came by on his way home from the hospital and ate dinner, too. He stayed for maybe an hour before he went home. Micah went to bed early and easily tonight, and then Maya actually fell asleep early, too, around 9:00 pm. We’ll see if she makes it all the way through until morning!

Around 9:45, my mom called again. She said she was actually trying to reach Dad, and thought she heard him at the hospital. I told her that he was not at the hospital, that he had just left my house and was probably at home. I offered to conference call him so she could talk to him, but she said no, she just thought she heard him and wanted to hold his hand because she was in pain again. I did my best to talk her through the cramps and relax, and I told her to call the nurse and ask for a few things that have helped. When we hung up, I called my father and suggested he call the nurse’s station and ask them to try her on the commode again to see if that helped. He called me back around 10:45 to say that the nurses took care of Mom as we requested and that she was feeling better again. I hope when I go in tomorrow that my mother tells me that she had a good night tonight. I’m finding it frustrating that the nurses tell me how wonderful she is doing and feeling, but my mother tells me a different story. It makes me wonder if they are checking on her enough. She was scared last night because her regular night nurse, Jeanette, was not assigned to her, and she had a new day nurse today, too.

Tonight I’ve been sad again…worried about what the future brings, but just sad that my mother has to deal with this, too. She keeps telling me how she feels like she has lost her dignity, and I can only imagine how hard that is for her. I want every second of time we can have together, but I also wonder if we are doing her any favors. I’m worried that the treatment will make things worse for her, and that her last few weeks will be spent in misery. Then I think about “what if” the treatment works and we have 6-9 months or more of time left…will my mom be in pain from all of these “side effects” like constipation the entire time? Is that quality of life for her? Obviously, I want my mom to live as long as possible, but I don’t want her to be in pain. And right now, she is miserable, and I am afraid to see her have to live that way.

Mom and I have had more serious discussions again…about her funeral, about the future, and about choices. My father has been trying to handle some of the “housekeeping” issues…like purchasing cemetery plots (Dad – did you notice how I spelled cemetery? C-E-M-E-T-E-R-Y And for those of you who do not know why that is funny, I’ve been torturing my father about spelling for probably 25 years or more, much to my mother’s amusement, and for the past few years, his inability to spell the word cemetery correctly has been the source of endless amusement for us). My father has also been trying to focus on pre-paying for funerals, too. It has been a rough thing for him to face this week, and even harder for him to sit down and discuss these topics with my mother. She has very specific wishes, and we are doing our best to make sure that when the time comes, we carry them out as she requests.

She also started talking today about life for my father after she dies. A hard subject for all of us to think about. Today she told me that she was going to talk to my father about re-marrying after she dies, so he doesn’t have to be alone. When he came by tonight for dinner, he told me that she raised the issue…and it sounds like he dealt with the discussion through humor. I hope he heard what my mother had to say, and I hope she feels like she was able to communicate what she needed to say to him. She has been frustrated with him lately because she wants to have some serious discussions, and my father prefers to turn everything into a joke (who doesn’t prefer laughter over tears, right?). I also hope my father does not have to spend his life alone…but the thought of him moving on at some point down the road is just too difficult for me to think about right now. Even the idea of making room for someone else in our lives when that person should be my mother…well, it hurts to consider. I hope that if and when that time comes along that I am strong enough to handle it, because right now, all I can think about is how our family will forever be broken without my mother.

You know what else I am missing today? My mother’s smell. Sounds strange, but for as long as I can remember, my mom has always had this lovely scent…slightly citric, slightly floral. It is a subtle scent, a mingling of her perfume, her shampoo, her deodorant, her hairspriay, her clothing detergent, and probably a dozen other things. It never smacks you between the eyes, but it is just this understated, light scent, almost an afterthought. Most people probably never even notice it, but after years of sitting close and sharing clothing and visiting often, the scent is a comfort to me.

What I love most about it is the way she left a trace behind after she spent a day snuggling with Micah or Nugget, or napping on my couch. I loved waking Micah up on Friday mornings after he spent the prior evening with Grammy, because I could smell my mother’s scent as I leaned in to nuzzle his cheek. Sometimes, I would notice it as I scooped up his dirty clothes for the laundry, and I would smile as I thought of her kissing his belly and tickling him. I love how the scent still sits on her pillows, even after the cleaning lady changes the bed. And I love how the scent gives me a hug when I borrow a shirt from her closet. Because that is exactly how I feel when I catch her lingering scent…like her presence is giving me a big warm hug. It always makes me smile to think that my mom stamped her presence in a room, or on my children, or in my home – to know that she has announced her presence in our lives in such a beautiful way. And today, I am missing it, because after a day at the hospital of snuggling and kisses…Maya came home without my mother’s scent stamped on her, and try as I might, I cannot catch it lingering on my shoulder from her hug and kiss goodbye.

So, here it is, 4:45 am, and I’m trying to wrap up this blog post. I still have to put away the milk I pumped (for those of you wondering how I blog and pump, the answer is simple – a hands-free pumping bra – BEST invention EVER for moms who pump). I’m not feeling tired at all…just a little wound up and my mind is racing. I think I will probably try and do a little work before going to bed. Micah has preschool again in the morning, and then we’ll be off to Hopkins for the day.

Have you ever had a dream about being exhausted? The past few nights, I’ve been dreaming about being tired. I dream I am in my car, driving back from Hopkins, barely able to keep my eyes open. In the dream, I feel almost drugged, and I imagine struggling to keep my eyes open while I swerve on the highway. I’ve even dreamed about pulling over to the side of the road take a nap, or dreamed about coming home to a quiet clean house and just…sleeping.

I’d like to tell you there is a deep message in my dreams, or to tie it to a beautiful story…but I think the only message is that I’m damn tired. In and of itself, that is fairly significant for me, because I rarely become truly exhausted. You see, I generally don’t sleep. I never have, so sleeping just isn’t something I look forward to doing. Yes, I did say I do not sleep. Whenever I tell people outside my family that I don’t sleep, I always get a very puzzled look in response, as if the statement must be incorrect.

I can honestly say I’ve never slept for eight consecutive hours, probably in my entire life. My mom tells me stories about how as an infant, I would stay up all night, babbling in my crib. Apparently, when I got bored of reading my books, I used to think it was fun to take my diaper off, but I believe that is another story entirely. I think I come by my insomnia trait naturally, since my great aunt Hilda never slept, either. A “good” night sleep for me is 4-5 hours, and a sleep marathon could be 6 or 7 hours with only one sleep interruption. I rarely have sleep marathons. I don’t sleep every single night, and I’ve actually been awake for more than a week at a time without even a nap.

Unlike people who are accustomed to sleeping, not sleeping doesn’t bother me. I fill my time with activities…knitting or crocheting projects, work, blogging…whatever my latest obsession. Sometimes, I just sit and catch up on the DVR.

I share all of this background to perhaps explain my new-found exhaustion. I actually do not think it is about lack of sleep…because even when I crash early, I still only sleep about 4 or 5 hours. Normally, I have vivid dreams, but I think I’m just emotionally exhausted, and that I keep dreaming about sleep because I just can’t process or feel any more, even in my dreams. Each day, I just look forward to a time when I can shut it all off again.

Funny, I never expected to come on here tonight (or this morning) and blog about sleeping. I intended to just give everyone that update about my mother they have been waiting to hear…she was finally feeling better today.

After finishing my blog post around 7:30 this morning (technically yesterday at this point), I cleaned up a few things then went upstairs to get MIcah out of his crib for the day (he was already thumping the wall and yelling for me) while Elliot and Maya kept sleeping. Micah was all smiles this morning, and we chatted and played while I made him pumpkin pancakes for breakfast. Much to my surprise, he even ate them! Megan arrived again at 9:00 and jumped right into the morning routine. She continued to watch Micah and help him finish his breakfast while I picked out his outfit for the day.

Micah turned 21 months old…and had his first day of preschool! I am amazed by how much he is growing each and every day. He is growing so big, and I think his language explosion is happening. He is still OBSESSED with Elmo (I think he asks to watch Elmo on tv about 100 times an hour). He knows most of his body parts, and he is pointing out letters and numbers. Lately, he has started singing, too. Elliot likes to sing a silly variation of the Hebrew song “Mayim” to Maya (I think the words go something like “You are Maya, you’re my girl, and I love you very much. Maya, Maya, Maya, Maya, hey Maya you’re my girl….”), and lately Micah joins in for all of the “Hey, hey, hey, hey” parts and he dances and claps, too. I love watching Micah participate. Micah is still a tiny little thing…only 23 lbs. We are slowly starting to work on potty training…just at his pace, no real rhyme or reason yet. He sits on the potty when he wants to sit on it or if he tells us he is peeing or needs to poop. His newest trick is taking his diaper off during the day and running around naked while I envision him soaking my house in urine. He likes to sit at the dining room table like a “big” boy, too, whenever we let him. So, happy 21 months, Micah!

After enjoying our pumpkin pancakes this morning, we kicked things into high gear. Elliot and Maya woke up a little after 9, and I raced around getting ready and nursing Maya before Elliot, Micah and I left for preschool. We arrived right on time, and Micah was able to meet his teacher, Lee, and a few of his classmates. He had a great time running around the classroom and climbing the jungle gym in the room. I think he is going to love preschool. We had one small mishap where he pushed another kid…I cannot wait until he outgrows this phase.

As we were getting ready to leave, I saw a baby doll on the ground and a toy stroller. I told Micah to pick up the baby doll and put it in the stroller. He immediately did, and he started to push the stroller around the classroom. He then headed straight for the door, and ran full speed ahead to the front of the building. We had to chase him and wrestle the baby doll stroller for him – he was hell bent on bringing that home with us! I think we need to go out and buy a baby doll and stroller for him sometime soon, because this is the second time he has tried to steal one.

After preschool, we came back home (well, Elliot detoured to vote). I nursed Maya and then Elliot and I took her with us to Hopkins (I stopped off to vote on the way out). When we arrived at the hospital, my mom was sitting and eating lunch with her nurse, Donna. Donna has been WONDERFUL to us, and we have been lucky that she has been stuck with us. My mom said she was feeling much better, and I was thrilled to hear it. I heard she did really well with her morning physical therapy and speech therapy, too.

My mom was still a bit uncomfortable, so we tried a new numbing jelly, which worked! Unfortunately, after lunch, my mom’s cramping returned. She was miserable for the next 2 hours again. My father arrived at the hospital during this time, too. The good news is, the discomfort was short-lived, and by 3:00, she was feeling great again. Hopefully, in the next day or two, my mom’s system will stabilize and she will have time to heal.

Right after my mom’s OT session, Elise (my mom’s friend’s daughter) stopped by for a quick “hello.” Jeremy arrived a little later, and we all had a chance to catch up a bit. Mom kept asking to see Delicious, so I brought Maya close to snuggle with her. The picture of the day is of Grammy and Delicious.

For those of you who have been asking, Mom is definitely in good spirits. She has been joking about this entire incident…says that there will soon be a headline in the newspaper that says “Woman Enters Hopkins for Brain Cancer Treatment and Dies of Constipation.” I am hopeful that today she will be past all of this trouble and feeling better and stronger.

This afternoon, I spoke to Dr. Holdhoff, mom’s medical oncologist. We talked about recent reports of a GBM vaccine that is being tested out in California. As I suspected, he told me that my mom was not eligible for that trial…or any medical trials at this point. In order to qualify for most medical trials, my mom would need to be ambulatory again – they rarely test new protocols once neurological damage occurs, but he will continue to look for options for us.

Lately, my mom has been obsessing about her radiological images. Shortly after my mom arrived at Hopkins, she went down for an MRI. I was not with her, but ever since then, she has been talking about these beautiful images she saw. I think she must have seen some bright and colorful photographic art work (maybe even with some fascinating radiation techniques…perhaps my brother and I need to go on a hike to figure out what she saw), but in the midst of all of this mess, she now remembers those images as images of her brain and the cancer. She likes to tell people that the tumor changes color with time, and that different parts of the tumor are different colors. She keeps asking me, the doctors, really everyone to get one of her images printed out for Jeremy, because she thinks it would be nice for him to have something beautiful from all of this ugliness, and she keeps thinking that his photographic eye would appreciate it most.

It finally occurred to me today that maybe we can give my mom what she wants. My brother is quite talented with photography and all of the different photo imaging programs, so I suggested to him that we get some of mom’s MRI images and see if he can work some photoshop magic and turn it into something brightly colored and beautiful. Jeremy was THRILLED with the idea – thought it would be a wonderful project. So, tonight he got a copy of one of my mom’s MRI scans, and he is going to try and make some beautiful art from it.

Elliot, Maya and I left the hospital today around 5, and Mom was doing really well. We heard she had a wonderful visit later in the evening with Suzette and Joel. We dined on a delicious dinner sent by my cousin Francine again. After dinner, I took Maya over to Beth El for Back to School night while Elliot entertained Micah and put him to bed. Back to School night…was kind of an annoying way to spend my evening. I did not find the presentations all that useful, and Maya was a bit fussy (I realized later that it was my fault…I forgot to give her Prevacid). It was nice to visit the classroom with the other parents and learn a bit more about the plans for the year.

Maya and I made it home a little after 9. She was awake for another hour (before we realized we had forgotten to give her Prevacid). She finally fell asleep, and Elliot and I watched a little tv. Micah woke up briefly at 10:30 or so…he was talking, and I started to laugh because I could see him on the video monitor pointing at the animals on his crib bumper while he was saying “eyes, nose, mouth” and touching the different body parts. Luckily, he fell back to sleep a little while later. I crashed for a few hours, and perhaps I’ll have a chance to nap for another hour or so before Micah wakes up again.

We’ll be headed back to the hospital again today. I am going to bring my computer with me and attempt to get a little work done while my mom naps. We’ll see if that works out! One of the best things about this process, however, has been all the time I’ve had to spend with Maya…and getting to see my mom with her, too. Maya has been amazing throughout this process. As I’ve had so much one-on-one time with her, I’ve been able to see her develop. She has become so social and smiley, and she loves to laugh. I cannot believe how alert she is, and it amazes me to watch her grow. So, I am trying to focus on those good moments with my children in the midst of all this…ugly. Perhaps these memories can do as my mother suggests, and turn something ugly and dark into something beautiful.

I am finding it a challenge to sit down and write about the day today. As you can see…it is actually 7:30 am on Tuesday, and I still haven’t written anything. Perhaps the easiest thing to do is to start out with a quick thanks to everyone. We’ve received all kinds of gifts, cards, flowers and treats that I just haven’t mentioned here. We are receiving your gifts, and we appreciate them. There is a beautiful plant from Jill and Paul Levine sitting in my mom’s room right now, and we’ve been snacking on treats from Allison Geare and Shelley Szekeley. I know that we’ve had other bins of cookies and snacks and treats delivered by our visitors and some even brought along from others, so please know we appreciate your efforts, even if I forget to mention you by name here on the blog.

Monday, September 13, 2010. I woke up this morning, hopeful that my mom would be feeling better. Once again, according to the nurses, Mom had a great night and was feeling much better. Both kids slept until almost 9 again this morning, which is always a relief. Micah woke up moments before Megan, our babysitter, walked in the door. I was nursing Maya while Megan tried to get Micah out of bed, and Maya fell asleep as she snuggled close to me. I made sure she was safe, then went into Micah’s room to help Megan out.

Micah was in a “standoff” with Megan, refusing to get out of his crib or have his diaper changed. He was quite polite, but had this defiant expression on his face, clearly saying “Sorry, lady, I’m staying put until I see Mommy.” I walked into the room, he shouted “Mommy!” and practically jumped into my arms. We changed his diaper, and I sent him down the stairs with Megan. Mistake number one for the day, since he became hysterical.

While Maya slept, I quickly jumped into the shower and got ready for the day. I came downstairs at 9:30, just in time for my work conference call. It was brief, and I am going to do my best to get the assignment done this week. After my call, Megan and I scurried to get the children dressed and ready to go. Megan left with Micah around 10:00 because he had a class at Kidville – the first day of the new semester. I haven’t been able to attend his classes there in weeks.

I dressed Maya in a cute little outfit – long pants with a flower applique on the leg and a cute little matching shirt. Moments after she was dressed, I heard her pooping again. Elliot walked in the room, ready to leave, and I asked him to change Maya while I went upstairs to brush my teeth. A few minutes later, we were on our way for the day.

We arrived at Hopkins on the early side today, and they were just getting ready to take my mom to physical therapy. She actually had makeup on her face and sporting one of her new grey hats…apparently, the speech therapist used the makeup as a training task for the day. I was hoping to find her in good spirits…but she was in excruciating pain. Suffice it to say, my mom’s intestinal blockage cleared, but caused a lot of damage and pain in the process, and that was the root of the problem today. Or, as a little child would say, her tushy hurt. She winced at even the slightest movement, and she was in tears. The nurse came in to try to make her more comfortable, but there was nothing that could be done.

My mom only made it through 20 minutes of physical therapy instead of an hour today. They did try her on a recumbent bike – she has far more use of her legs than she realizes, and she was using both legs to pedal! Unfortunately, every turn of the bike caused her pain. It hurt too much for her to stand and walk, she was drained of energy, and it hurt to move her legs. After a while, they realized it was just too much and took her back to the room.

I went into the family lounge to nurse Maya (she was busy yelling at the top of her lungs) when I discovered mistake #2 of the day…apparently, that was asking Elliot to change Maya’s diaper this morning. She was covered in poop – I can’t quite figure out how Elliot managed it, but there was poop all down the back of her shirt and it was soaking wet. Since there was no new poop in her diaper, it was obvious that they had a changing mishap earlier that day. I cannot figure out how he missed it! Since I have not yet started carrying around extra outfits for Maya, we had to improvise. Elliot found one of those newborn side-snap shirts in the car, and we put her in that instead of her adorable little shirt.

Lunch was waiting for my mother in her room, but she was too uncomfortable to eat. They had given my mom a valium to try and ease her pain. The nurse tried some new topical medications, and my mom was resting in bed. She asked me to read the journal entry from Sunday, and thankfully she fell asleep listening!

I had hoped that meant she was feeling better, but no such luck. When she woke up in the afternoon, she was still miserable. My father arrived around 2:15, and he and Elliot went in with my mother for a bit. Elliot managed to get her to eat a few bites of her sandwich and some fruit, and then my mother asked to see “Delicious.”

Over the past few days, she has nicknamed Maya “Delicious.” It started when she would kiss Maya and tell me that she was “Delicious.” Now, her nickname is officially “Delicious.” After a visit with delicious, my mom was back to crying and writhing in pain. It breaks my hear to see my mom so uncomfortable. We brainstormed several other ideas with the nurse, and tried them all, but nothing seemed to soothe my mother’s pain. Around 3:30, the occupational therapist tried to come in for a session. She worked on turning my mother over in bed and building up her strength with her left arm…but a few minutes later, she decided to cut therapy short because of my mother’s discomfort.

Diane and Joey showed up during my mom’s occupational therapy, and they came in for a visit after the therapist left. My mom was just miserable again. Because she was so uncomfortable, they were not able to stay too long – but long enough to distract her a bit and bring a smile to her face.

When they left, it was around 4:30. The nurse had ordered some new medicine for my mother, and we gave it a try. Unfortunately, the medicine stung, and my mother looked as if she was going to pass out from the pain. I felt sick watching her, and helpless again. I held her hand and kept her company for the next hour. Finally, around 5:15, I knew we had to leave. Our babysitter needed us to get home. I apologized to her for going, and she told me not to worry. Naturally, I started to cry…it just hurt me to leave her there in so much pain. Thankfully, my father was able to stay with her for another few hours. Apparently, she gripped his hand (and possibly broke a few fingers) for the next few hours until he finally left around 8.

I called Megan to apologize for running so late, and she said it was no problem, but asked if she could bring Micah to meet Christin (our other babysitter) at the mall to run an errand. I said absolutely!

Elliot and I made good time on the way home. I was crying most of the drive home because I hate to see my mom so miserable. When we got home, we were greeted by food delivery, ordered by my cousin, Francine. Amazing! Megan brought Micah home a few minutes later, clutching a stuffed Winnie-the-Pooh. Micah apparently latched onto Pooh and wouldn’t let go, so she just bought it for him.

We all had a great dinner, including Micah. We watched a little “Word World” after dinner. I think this might be my opportunity to brag a bit…Micah is actually recognizing letters and numbers now! Not all of them, but a lot. When he sees letters on paper or in a book or on a t-shirt, he’ll point to them and read them. “O,” “A,” “P,” “E,” “S,” “T,” “C,” and “M” appear to be his favorites right now. He also recognizes a few numbers…1, 2 and 4. I’m not sure what happened to 3, but it is his favorite number to say.

Micah went to sleep at a reasonable time (and took Pooh to bed with him). My friend Laurie came by to drop off a quiche and hang out for a bit, and little Miss Maya was just being cranky. It was pretty late (maybe 10:30 or 11) when we finally got her into her bassinet for the night.

The only other good news? My phone rang around 10:30…and it was my mom. She just wanted me to know that she had fallen asleep and was feeling much better now (although she thought it was 10:30 in the morning). What a relief! I hope she is still doing well after a full night of sleep.

I can already hear Micah stirring for the day, so I have to head upstairs and get him. Today is his first day of preschool, so I’m sure I will have a ton to report later!

I’m sorry to say that today was not an easier day for Mom. Today, my father called at 8:37…and woke the children. I guess that makes us even, since I felt so guilty for calling and waking him yesterday! According to the nurses, my mother had a great night and was feeling much better. Her morning schedule included therapy until 11:30, so my father and I decided we would head to the hospital a bit later and take care of a few things first.

First stop for us…a 4th birthday party for our friends’ son, Merrick, at a local magic shop. We were supposed to be there around 10:45, but it was close to 11:15 before we managed to arrive. With all that has been going on, we did not have time to get a gift for Merrick…I wish I had thought about it the other day when the babysitter ran out to the store for me to get my niece’s gift. While most of the children at the party were Merrick’s age, there were about 3 2-year olds and a few babies there as well.

Maya was great – she sat quietly at the start of the show, then nursed and fell asleep. I had her in her car seat off to the side for most of the party, and we barely heard a noise from her. I think Micah was a bit too young to appreciate the show. He did sit for a little while and watch, and he even smiled a few times, but he seemed far more interested in jumping on and off the seat, playing on the stairs, and yelling “Mama!!” at the top of his lungs during the performance. I should be embarassed, right? Oops…I mostly just laughed at my poorly behaving child. I told him “Shhhh” a few times…only to have him yell “Mama, Shhh!” right back at me. Perhaps we need to practice our “inside voice.” One of the other two year olds (the birthday boy’s sister) skipped the show altogether, and her cousin was frightened of all the loud noises in the show, so I’m going to tell myself that Micah behaved appropriately for his age.

It was good to see our friends Niki, Eric, Sam and Betsy there. I had a wonderful chat with Eric’s mom, and her support meant a lot. She lost her daughter to breast cancer about 6 years ago. I had one small breakdown when one of Niki’s friends asked me how my mom was doing…I need to figure out how to handle the questions out in public.

Around 12:00, I started to get antsy about leaving the party and heading up to the hospital. I was thinking about my mom and wondering if she would have some one there to help her with lunch, and just feeling the need to lay eyes on her and see how she was doing. It took us nearly 20 more minutes to get everything together and get out the door. Elliot didn’t quite have the same sense of urgency I did, and Micah was decidedly uncooperative…he wanted to sit on the floor and eat a bag of cheetos, and getting him to relinquish his grip on that bag was quite a task. I still can’t figure out how he got the bag of cheetos in the first place.

We arrived at the hospital around 1:40, and ran into Arleen and Lorin at the front door. Arleen helped me bring the kids upstairs to see my mom. Sheila and Les had arrived a few minutes before, and my father showed up and whisked Micah off to the family lounge.

When I walked in, Mom had a stuffed animal puppy dog laying across her chest. I think it was Sheila that brought him today, and my mom decided to call him “Brownie.” Mom was not feeling well (and she used that stuffed puppy all day today to try and bring her comfort). We learned late yesterday that she has an intestinal blockage, and it is making her miserable. I had thought the medicine they gave her last night made her feel better, but she told me that she had a terrible night last night. She said she tried to call me, but heard a message that my number was not in service. It hurt that she tried to reach me and I was not there for her. I think she is having difficulty with all of the phones because of her vision. I need to go pick her up an accessible cell phone this week and see if that helps. Criteria – non-folding, bigger buttons, voice commands, and maybe some spoken menus (or at least a larger screen). I’ve got contacts through work that I will use to ask for some recommendations.

My mother told me that my brother had been by to visit her in the morning (I knew he planned to try and stop by – Saturday he had taken the girls to Dutch Wonderland to celebrate Paige’s birthday, so he had not seen her since Friday). Mom’s friend, Sharon, had been there, too. I guess my journal entry yesterday had prompted Sharon to do some reminiscing, too. Apparently, way back in 1960-something (I’ll have to ask them to remind me of the year), my mom went on a trip to Israel. While there, she bought Sharon a mezuzzah necklace as a gift. Apparently, that meant the world to Sharon, and all these years later, she has saved that necklace. Today, she brought it to the hospital to show my mom. The irony of the story? My mom doesn’t really remember the necklace, but was so touched that something she bought for a good friend of hers so long ago meant so much to her that she saved it. My mom said that it is funny how sometimes even the smallest of gestures can mean the world to someone else, even if we don’t think the gesture is important at the time.

As my mom shared this story with us, I could see how much pain she was experiencing. We tried everything we could think of to increase her comfort. We offered her drinks, changed her position, found foods that we thought could help…but my mom just was miserable. Sheila showed us the new hat she is crocheting for mom (the color is beautiful!) and Arleen pulled out 2 new hats she had purchased – the picture of the day has my mom sporting one of her new hats and cuddling Brownie. Arleen also brought out a platter of brownies (and I believe a few other cookies) from Shelley Szekeley…thank you so much for thinking of us!

Lorin walked in a few minutes later…bringing smoothies for my mom! About a week before she was hospitalized, my parents went out to dinner with Arleen and Lorin. It was one of the first times my mom really felt well enough to go out and enjoy herself since May. Elliot and I were up in New Jersey that day visiting Elliot’s family, and I remember being amazed that my mom was still out at 10:30 when we called to say we were on our way home. We caught them at Arleen and Lorin’s house, hanging out, laughing, and enjoying smoothie’s from Rockville’s newest “Smoothie King.” Apparently, Lorin had just purchased a magic bullet blender and was practicing his latest skill. When I think back, I’m amazed how much my mom changed over the course of that week.

As my mom’s discomfort continued, we went out to get the nurse to see if there was anything else we could do to help her. We then pulled out the next surprise…Arleen and Lorin brought a laptop so my mom could visit with their daughter, Rayna (and of course Rayna’s dog, Riley) via Skype. We logged on and all started chatting! Rayna was able to say hello, show off her baby bump, see Micah (who felt the need to play with the bathroom door, then took off his sandals and stole my shoes while he walked around my mother’s room). During the Skype chat, Sheila and Les said their goodbyes and headed out for the day.

Elliot and my father spent a lot of the day in the family lounge entertaining the children, but they took turns cycling in and out of the room with me. After our brief Skype visit, my mom asked me to read yesterday’s journal entry and your messages. Once again, the kind words helped my mother through a difficult time. I especially wanted to thank our cousin Francine for her message…my mom got a huge grin on her face thinking about Gracy.

Arleen and Lorin left next, and I stayed in the room with my mom for a bit longer. I had Maya with me, and I kept bringing her in close to my mom for kisses. Every time they kissed, both my mom and Maya lit up with smiles. The nurse came in to try and relieve some of my mom’s pain and discomfort, but nothing seemed to help. My mom was in tears from the pain, and I just felt so helpless. I keep thinking how the cancer isn’t what is making my mom miserable, it is all these other issues that are the problem.

It broke my heart to leave at 5:30 with the kids when my mom was still so miserable. I felt helpless…I couldn’t do anything for her there, but I hated to leave her. Micah was melting down and we only had the one car, so I knew I needed to leave. I wish I didn’t feel like I was always making choices between my mother and my children. My father stayed behind with her (and didn’t call me with any updates tonight, so I have no idea how they did). I’ve been wanting to call the hospital all night…but afraid to hear that she was in more misery when there is nothing I can do to help right now. I’m hoping that she finally found some relief tonight.

Micah threw a screaming fit over dinner…that child just does not like to eat anymore. He finally had a peanut butter and jelly sandwich for dinner, watched an episode of Sesame Street and went to bed. Maya was a bit of a challenge tonight – she was awake until almost 10 because she started to cry every time I put her down. Finally, Elliot seemed to have the magic touch – he cuddled her close then put her down in the bassinet.

Before I forget, Sharon left me a card at the hospital, and included a beautiful poem. I’m not quite ready to share that here yet, but it had me in tears. I did read it to my mom this afternoon, and she, too, found it moving. So, thank you, Sharon.

It is now almost 6:00 am. I am going to upload a few pictures, freeze the milk I pumped while writing this entry (pumping and journaling has become my nightly routine), and try and get in a nap before my day begins. I am going to try and handle a work conference call today – between the baby and my mom, I’m so far behind in all of my work activities, and I just don’t know how to fit that in, too. I was supposed to start back at work full-time the week everything happened with my mother, but that looks like it is temporarily on hold. Who am I kidding? I have no idea how I am going to keep my clients happy on the heels of a 3 month maternity break. I can already tell they are ready to walk, so there is a good chance I will be out of a job in the next few weeks. The Fall usually starts my busy (and travel) time, and there is just no way I can do my job and balance my family right now. It is unfortunate…I really loved my work. I guess I should start thinking about what I’ll do for my next career when I am ready to go back to work.