I wish I could say TGIF…I’m ready for a change in the grind, but weekends are starting to feel the same as weekdays to me. 18 more days. We just keep repeating 18 more days. Today was kind of an uneventful day, so I think this update will be on the short side (you are probably thinking “finally!”).

The kids woke up early this morning – 7:30, I think. We lounged in bed and then started to get ready for the day. My father arrived around 9:45, and we headed out to go look at a few houses. The first place was nearby in Rosedale Park…it was just a bit too small. There were technically enough bedrooms, but there were no closets in any of the rooms. The second place was beautiful – a little further out in Potomac…but it was moldy. The layout was good, but there was no way we could live there with the mold issue. Along the way, we stopped for our free cupcakes at Georgetown Cupcakes. A little fun in the day!

By 11:00, we were back home, and Dad headed out to Levindale. I stayed behind for another hour with the kids, then drove up with Maya to meet my parents at Hopkins. It was another rough day at radiation…they cannot get that stupid machine fixed! Luckily, they were only an hour or so behind. We finished around 3:15, and I headed back to Levindale. Unfortunately, the transport was quite delayed, and it was almost an hour before my parents returned to Levindale. Jeremy showed up shortly thereafter, and we had more waiting.

The PT department had decided to switch mom to a “sports” bed, and we needed to wait for them to bring it up and change it. My mother is NOT good at waiting, and she was quite impatient during our wait. They finally moved her into the new bed around 5:00. We were again talking to the head nurse because they have not yet figured out how to transfer my mother to a commode, and it is causing significant problems for my mother. We are furious about the situation.

My mom’s dinner arrived around 5:15. I helped my mom set up a few things, pick out an outfit for the morning, and take care of some odds and ends. I left around 5:30 so I could make it home early, and Jeremy and Dad stayed behind to sit with Mom for dinner. Jeremy plans to return with the girls in the morning.

I made it home around 6:45 – and my friend Amy was here with her husband and 2 girls! They had brought us a wonderful dinner, and we all sat down together and enjoyed. The kids played really well together, and it was a fun, normal evening. I kind of miss those normal evenings.

No real word on mom overnight – I think all has been okay. I’m going to head up early to spend the day with her, and I expect we’ll have a few visitors today. I’m not exactly sure what time she has PT – she usually has at least 1 hour in the morning.

“Man plans and G-d laughs” seems to sum up my life these days. Today, I planned to take Micah to preschool, visit a house, go meet my mom at Hopkins for radiation, come home no later than 6, and have my father help me out for the evening while Elliot attended a work meeting. As you can probably guess, my day did not go exactly as planned.

Maya woke up at 2:30 in the morning again last night…I wish I knew what was going on with her lately. After 6 weeks of reliably sleeping through the night, she has now woken up two times this week in the middle of the night. Perhaps she is in the middle of a growth spurt, but I really wish we could get more predictability. I’d like to get her to bed earlier each night and establish more of a routine, but I have a feeling she may take after me and prefer to stay up late.

After our brief 2:30 am hiccup, the kids slept until 8:15 this morning. Once again, we brought both of them into bed with us for a little while. I have to say, I’m starting to like the morning cuddle time…Micah and Maya are so cute together (Micah was actually holding her hand this morning), and I love having both of my babies close to me.

We came downstairs around 8:30 and got both children dressed and fed. Well, we gave Micah a bowl of cereal, and he ate some of it…but mostly spent his time crushing it. Around 9:15, I realized Megan had not yet arrived, and I noticed a text message from her telling us she was running an hour late. I could not seem to get everything together this morning, and Micah and I did not actually leave for preschool until almost 9:30.

Preschool went well today. Micah participated in the art project (decorating a kippah), and he was fairly well behaved. He enjoyed time on the playground, and he loved putting money in the tzedakah (charity) box. Today, the class celebrated Shabbat (a day early). We said the blessings, lit candles, drank grape juice, and ate challah. Micah’s favorite part was cleaning up – he loves to take all of the paper cups and throw them in the garbage (I would have to say he gets that trait from me, NOT his father)!

After class, Micah and I came home just in time for a call from my father. He had been notified by Hopkins that they were AGAIN running several hours behind. Luckily, we were able to delay my mother’s transport to Hopkins so she could wait at Levindale instead of at Hopkins. My father told me not to come to Baltimore, but I disagreed. With all of the problems we’ve been having, I feel better being there and helping. And then my father delivered the bad news…he was canceling on me for tonight. All I could think was “crap” – how am I going to get home by 6, handle the 2 kids by myself all night, including give 2 baths and put them both to bed?

Elliot and I prepared to go visit a rental house. Unfortunately, Micah melted down when we left. It took us a bit longer to get out the door, and we ran a little late for our appointment. The house seems perfect for us…but the rental agent told us that it was unlikely she would rent to us because we do not want to rent long term. I’m hoping she’ll change her mind. In the meantime, we’ll keep looking.

As we were driving back, there was an accident on the beltway…more delays. I drove Elliot back home (well, most of the way home – he decided to get out and walk the last few blocks to save me some time), then headed out to Baltimore. I spent most of the trip trying to figure out if I had any friends or family available who could come to the house for 30 minutes to watch Maya while I bathed Micah and put him to bed. Unfortunately, I kept striking out.

I was a bit distracted on the drive – I think out of habit, I started to drive to Hopkins instead of Levindale, so I went a tad out of my way. When I arrived at Levindale, my mom was in bed and my father was reading the blog to her. I took over and finished, and I read her the messages, too. Mom seemed to be in good spirits, but she was having issues with her stomach again. When I asked what was happening, I learned that the therapy department had given orders that she could no longer be moved without a mechanical lift, and as such, they would no longer allow her to use the commode or the toilet. I was furious – we finally had my mom doing well, and they messed with everything again! I always feel like we take one step forward and two steps backwards…and if you do the math on that, it feels like we never make any progress.

I spent the next hour trying to talk to the nursing coordinator, the floor manager and the doctor about the problem. They gave us a song and dance about licensing issues (I’m not sure I believe that at all), but promised to work out a solution. Unfortunately, solutions are not immediate, and every minute they put this off is worse for my mother.

We got word that Hopkins was even more delayed – apparently, their radiation machine kept breaking down today. They ended up canceling my mom’s appointment for today, and said they would tack on the extra day to the back end of her therapy. That now takes us to October 26.

With all of our afternoon suddenly freed up, we decided to put Mom into her wheelchair and take a walk. We made it downstairs to a concert…which has to be one of the most painful things I’ve ever endured. It was a bunch of very elderly off-key performers singing songs by Roy Rogers and Dale Evans…and tap dancing. We did not stay there very long. We started to head out to the courtyard and wander around a bit, but my mother was not feeling well and insisted on going back to her room.

The rest of the afternoon was fairly quiet. My mother talked on the phone, we chatted a bit, and we waited to hear from the staff. Mom had a wonderful conversation with her cousin, Bernice, and she told Mom a bunch of stories about our family history. My mom was thrilled – she told Bernice that we would come up to Buffalo to visit her and we’d bring a recorder to capture all of the stories. I hope that we are able to do that – we just need to get Mom a bit stronger first. Mom also had a lovely chat with Rayna, and I’ve been told a few other friends might have caught her on the phone today, too. Despite her discomfort, Mom was in good spirits.

We had one heart-to-heart about the future…my Mom keeps saying that she will miss us terribly when she is gone. We talked a bit about dying…she said she was worried that she would be somewhere alone and scared when she dies. We both agreed that neither one of us really knows what to think about what happens when we die. My mom said she thought maybe when we die, it is just the end of us, that there is nothing. I told her that I didn’t know, but that if we continue on in some capacity, I believe it would have to be peaceful, not scary and lonely. I think there would be joy, and that if there is a way to be close to loved ones, I was sure she would be right there with us. After some more talking, I reminded my mom that she wasn’t going anywhere yet.

We wrapped up the day on a positive note. My mom and I are planning to try a game of cards tomorrow and start working on our crocheting project. We finally got word back from the nurse coordinator that they might have a special sit-stand lift they can use with my mother to allow her back on the commode. Hopefully, we’ll have everything ironed out again in the morning.

I left my mom at 4:45 so I could get home in time for Elliot to leave for his meeting. As has been my theme all day…I was delayed by another accident. I got home after 6:00, and Elliot ran out the door to his meeting. On my way home, I finally reached a friend of mine who was available to help me with the kids at bedtime…but it turned out that my father was able to leave my Mom at 6:00 and make it over to us in time to help with bedtime. That might have been the only thing that worked out today. I prepared him some dinner (well, does leftover pizza count?), and we watched a little tv together. He entertained Maya while I gave Micah a bath and put him to bed. Maya was pretty cranky – she cried most of the time I was upstairs with Micah – it is the primary reason I cannot handle bedtime with the two of them alone yet. Maya goes to bed after Micah, but Micah’s bedtime is her fussy time. She needs to be held and cuddled or she becomes hysterical.

Once Micah was down, my father headed back home. Micah was awake and chatting for a while in his crib – I love spying on him on the video monitor. Maya nursed and fell asleep by 8:45. I put her in the swing to see if she would stay asleep, but she woke up again around 9:15. I nursed her again, and she fell back asleep. I let her sleep on me for a while before we moved her upstairs.

My father called to tell me he spoke with mom and that all seemed well tonight. I hope that the rest of her night is good, and that tomorrow, for once, Hopkins is running on time. My father is due to come over around 9:30 tomorrow morning so we can go look at two more houses to rent. We are without a babysitter tomorrow, so we have to figure out how to juggle Micah for the day tomorrow. I’ll be heading up to Baltimore to spend time with my mother, and I hope to be home by 6:00 pm again. Let’s hope G-d doesn’t laugh at my plans again.

All day long, I make mental notes of the things I want to write here, or the things I want to tell my mom when I see her. Naturally, I tend to forget most of those things by the time I sit down to write, or by the time I see my mother. When I’m having a good day, I jot down little notes when things pop into my head. Tonight is one of those nights…I had about a dozen things I wanted to share, but my mind is currently blank as I sit down to write.

I am almost afraid to say it, but I think we may finally be reaching a better place for my mother. Most of our days seem to be good ones, and that has been such a relief for all of us. I think we’ve finally “broken in” the staff at Levindale, and we seem to be on the right track.

Last night was a much better night for Maya…she fell asleep around 9 pm, and slept through until 8:30 this morning. Micah woke up around 8:15 – I went in to get him and brought him downstairs. Maya and Elliot joined us about 30 minutes later. Micah has just been adorable lately. Aside from his Elmo obsession (Micah wakes up saying “Mommy? Daddy? Elmo, please!”), he spends a lot of time naming body parts. His newest word is “arm” – I cannot wait for my mom to hear him, because he says it like he is from Boston – “ahm.” My mother loves to mimic Boston accents, and often teases her friends Diane and Joey (who are from Boston) by telling them they “talk funny.” I’m sure she will love listening to Micah’s new-found Boston accent.

Megan arrived at 9, and within moments, Micah confiscated her keys. He loves to walk around with her keys all day long. They left for Micah’s Kidville class, and Elliot, Maya and I headed up to Levindale. Our plan today was to go up early, stay with my mom through radiation and then return home early. The best laid plans, right? Or, as my mother always says, “Man plans and G-d laughs.”

We arrived at Levindale and my mother was down in therapy. Delicious and I joined her there, and she was doing really well. They had decided to put a knee brace on her, and worked on standing. She actually was standing for about 7 minutes (with support), but the knee brace kept her left leg from buckling under. I had actually asked the therapists at Hopkins to try a knee brace, but they did not think it would work. I was glad to see someone else came up with the same idea! Mom also sat upright without support for about 10 minutes, and she was doing a good job of using her left arm.

After therapy, we went upstairs to finish our care planning meeting that was postponed from yesterday. My father had arrived, and we sat in the conference room with the social worker, the floor manager, the nutritionist, the recreational therapist and the therapy coordinator. We started out talking to the nutritionist – my mother had a chance to ask why her food orders are often wrong, and the nutritionist apologized and said she would look into it. The recreational therapist went next – my mother told him that he should come by and tell her about the different activities, and if she was around and felt like joining, she would.

The bulk of our meeting focused on therapy. We talked about the different type of therapies my mom is getting and the goals for the therapies. We talked about how my mother is more capable than some of the therapists realized, and we talked about her tendency to close her eyes due to her vision issues. We felt great about the goals – working on her core stability, increasing her use of her vision and reminding her to use her left side. The goals seem quite reasonable to me, and I think that they are things my mother can accomplish, too.

We also spoke with the social worker – they will be helping us identify the equipment we need once we return home. There were recommendations from Hopkins, but we think things will change once my mother completes her course of therapy at Levindale. She seems to be getting stronger each day, and we are hopeful she will be able to better use her left side and regain some of her independence.

We ended by talking about some nursing/medication issues. We informed the floor manager about the mistake in chemotherapy medication the other day, we discussed how they are administering her steroids, and we also raised some concerns about how they are administering my mother’s insulin. The manager was surprised that there had been a mistake with the chemotherapy medication, and she said she would re-check the system to make sure it doesn’t happen again. We also verified the times they are administering her steroids – turns out, instead of giving her the pills every 8 hours, they were giving it to her at 9, 2 and 8, which means that my mom was going 13 hours in between her last steroid of the day and her first steroid pill the next day. The long span between pills is the reason she has been getting headaches! They changed the timing of the medications, and now she will be getting her pills at 7, 2 and 10.

Our last issue – the insulin. Often, the nurses are declining to give my mom insulin when her pre-meal blood sugar is normal. The current plan is to give her an amount of insulin based on her pre-meal blood sugar, and then an amount of insulin intended to compensate for the carbs she eats during her meal. The doctor has been concerned that her blood sugar numbers keep getting above 180 every day, and they keep increasing the amount of insulin she should be getting with each meal, regardless of her pre-meal blood sugar. When the nurses disregard the order and do not administer the insulin, my mother’s sugar climbs, the doctors think the insulin is not working, and they raise the amount of insulin she should be getting, which makes the nurses more and more inclined NOT to give her the insulin. It is a vicious cycle! I’m hoping that the nurses will start administering the insulin as directed, and that we do not need to have this discussion again.

After the meeting, my mom ate lunch and Elliot ran over to visit our friend, Jen, who is on bedrest in the Labor and Delivery ward at Sinai. We left for radiation right at 12:45, and today, Elliot and my father drove to Hopkins with Maya and I rode in the transport with Mom. During the trip, I read her the blog and your messages. Donna – my mom is hoping to see you soon, and says she misses you! She also said that there are some people in life that just have a way of making others feel safe and cared for, and she said that you always have a way of doing that for her. So, thank you, and we hope to see you soon.

Mom was feeling well, but a bit uncomfortable and fidgety in the wheelchair. We had arrived early (about 1:20), and we learned that they were running quite late for radiation. My father stepped out to go check with the pharmacy about my mother’s chemotherapy prescription. While we were waiting, my mom and I chatted. We are working on a project together, and I am trying to see if my mother will be able to do some crochet work again. We had a pattern book we were discussing, and we started to pick colors for a new project. We also discussed her upcoming birthday – we are thinking of trying to go out to a restaurant for lunch that day with some friends.

When my father returned, he was concerned – her chemotherapy medication had arrived, but it was 120 mg, and she has only been getting 110 mg at Levindale. I was certain they had told us she was getting 115 mg at Hopkins, and we realized that we just did not know what the correct dosage should be. I sent a note to Dr. Holdhoff, her medical oncologist, to sort it out. He responded late tonight, and said he wants Mom on 120 mg. He said her ideal dosage was actually 114, and they usually just round to the nearest 10 mg, but he said it was possible that they were giving her 115 mg at Hopkins. She has definitely not yet been taking 120 mg since we started her treatment, and, of course, we are now worried about whether this is a major screw-up. Hopefully, we can get the prescriptions and orders all sorted out tomorrow.

At 2:00, they told us they were running at least another 1 hour behind. My mother asked to transfer to a bed to rest, and she ended up taking a nap for a little over an hour. She seemed MUCH better after her nap. At 3:15, they told us it would be another 45 minutes until they could see my mother. My mother’s friend, Diane, had planned to come and visit her this afternoon, but we were running too late to make that possible.

Elliot, Maya and I had to leave at 3:30 in order to get home in time for Megan. I apologized to my mother, and we left. The worst part – I not only had to leave my mom before she finished radiation, but it was several hours later than I had expected. Luckily, my dad called 10 minutes later to say that they had taken my mother back for her treatment. What a frustrating day! Radiation has been quite late most of this week, and I’m getting sick of it. I just wish they could run on time.

Elliot and I arrived home before 5. We had a good evening with the kids. I was exhausted and I tried to stretch out for a nap…but Micah just could not stop jumping on me. He was all about Mommy, and just could not let me close my eyes. Maya was also quite noisy – she just loves having attention! She has been such a smiley little girl, and she is loving her time in the evenings on the play mat (and no surprise, but she has been quite a hit at Levindale – all the Jewish grandparents adore her). We finally put Micah to bed at 8:30, and Maya fell asleep a little after 9.

Elliot and I were supposed to go visit a few houses tonight, but the real estate agent canceled on us. My father and I will go visit one house tomorrow night, and we have another visit scheduled for Friday morning. I am hoping we can quickly line up a house in the next week or two.

Once again, today was a good day. But something in the air…has me reminiscing, and at the same time, wondering about the future. I think some memories from childhood are so profound that they affect us throughout our entire lives – they become a part of the fabric of our being. Ever since I became a parent, I’ve been thinking more and more often about my childhood. I pull out the happy memories, and I think about how I can duplicate those precious moments in a way that might be a gift to my children – that they may also carry such memories with them throughout their lives.

So many of my precious memories involve close family friends, like the ones I shared surrounding our break fast celebration each year. But many of my memories also involve my childhood best friend, Elizabeth, and her family (the Winstons) who lived next door to us. I’ve been thinking a lot about the Winstons recently…not only because of a well-timed email that arrived from Wizzer the week all of this started with my mom, but also because of a beautiful card Mr. and Mrs. Winston sent my mom last week.

I spent so much of my childhood in their home. It was always filled with all kinds of pets…hamsters, guinea pigs, snakes, chicks, dogs, turtles, cats…you name it, we probably had it as a pet. I say “we” because I always thought of Wizzer’s pets as mine, too. I remember sitting around many days and nights in front of their fireplace, listening to Mr. Winston play his guitar and sing to us. One of my favorites was “Fox Went Out on a Chilly Night.” When I learned I was pregnant with Micah, I went searching for that song online…even downloaded a version from iTunes and play it for Micah now.

The Winstons had another daughter, Becky, who died as a young teen from a congenital liver problem. Becky was also a huge part of my childhood. Perhaps a year or two before she died, the Winstons had gotten some baby chicks for her, and she kept them in a makeshift chicken coop in their house. I remember each morning, sitting in the Winston’s kitchen before school, listening to Becky wake up and hearing her footsteps padding down the hall to check on her chicks. At the time, the Winstons also had this…clever and determined dog named Willie. Willie was a long haired miniature dachshund, and he had a knack for breaking into the chicken coop some nights. Each morning, as Becky came down the hall to check on her baby chicks, we would all freeze in the kitchen, hold our breath for a moment, hoping to hear Becky squeal with joy as she saw her chicks. It was that instant of hope I remember feeling – knowing that there was likely bad news ahead, but for just a moment, each morning believing it would be okay, and feeling my heart expand with faith. Far too many mornings, however, Becky would come down the hall, time would stand still for a moment…and then she would cry out in despair “Oh, Willie!” At that moment, my heart would sink, and I would know that Willie had broken into the chicken coop again and taken out another baby chick.

So many mornings, I wake with that same feeling – for an instant, I hold my breath, hoping to hear good news for the day, knowing that the possibility of a version of the “Oh, Willie” cry from my mother is lurking ahead. Today, we heard only squeals of delight…it felt like another day that we managed to keep Willie out of the chicken coop.

Maya was difficult last night – after she woke up again at 4:00 am, I pulled her into bed with me, and we snuggled together and slept. She was quiet and nestled close to me until Micah woke up at 8:15 this morning. It was another typical morning – we brought Micah into our bed for a little while before bringing him downstairs for breakfast. Megan arrived at 9, and Elliot took Micah to preschool this morning. While they were out, I managed to get a bit of housekeeping done – I finally sorted all the clean laundry downstairs and put away the kids’ clothing. Micah definitely needs a Fall wardrobe – I have several boxes of hand-me-downs from my friends that I need to sort through so I can pull out clothing for him. That is the next task on my housekeeping “to-do” list.

I took care of a few work items, caught up on email, searched for a few houses for us to rent, and got myself ready and out the door around 12:15. Maya and I met my parents’ at Hopkins, and we had a bit of a wait. Mom had gotten a shower this morning – I think perhaps her first one since she was hospitalized. They had a wonderful wheelchair shower chair, and my mother said it felt good to take a shower.

Once again, radiation was running behind. We met with the doctors, we chatted, and Mom got her kisses from Delicious. Mom has been getting headaches the past few days, and we were concerned about some brain swelling. After talking with her, the doctors have decided not to increase her steroid dosage yet. They will check with us again tomorrow, and if her symptoms start to worsen, they will immediately increase her dosage. For now, they want my mother to sleep with her head elevated, and we may need to talk to the nursing staff about changing the times they administer her steroid – they seem to stretch it closer to 12 hours at night, and that might be contributing to her headaches.

Today was an interesting day as we waited in radiation – I think we heard the bell ring 2 or 3 times. Hopkins (and many other cancer centers) have a tradition – patients who complete their course of radiation ring a big bell in the middle of the radiation oncology wing after their final treatment. When my mother heard it today, it brought a huge smile to her face. We talked about her ringing the bell, and she said she was looking forward to it – that it is a big milestone she cannot wait to see. I think on her final day of radiation, we’ll have a big celebration – perhaps our entire family will be there, and we’ll take video and pictures of my mom ringing that bell!

We did receive some good news at Hopkins…my mom is doing very well, and they decided to add 7 more days of radiation to her course of treatment. That means my mother’s last day of radiation will now be October 25. It does mean she will be in Levindale longer, but this is good news – they only add time to patients who do well. They believe that it means they can extend my mother’s time with more days of treatment.

When we finally got back to Levindale today, we were almost an hour late – and we had missed our family planning meeting. My brother had been waiting for us for almost 45 minutes, but the team had to reschedule our meeting for tomorrow morning. Instead, we met with the social worker and the nurse coordinator to discuss a few concerns. First, my mother was a bit ticked off by some events that had transpired. Apparently, her physical therapist had failed to return her to her room after therapy – he simply dumped her in the front hallway by the nurse’s station. My mother felt disrespected – she had to sit there and beg for help for a long time, and apparently, the nurses ignored her. She kept saying that she needed help and asked if someone would help get her to her room. The nurse coordinator apologized profusely, and they made a note to discuss the issue with PT.

Our other concern was that the floating nurse who was assigned to my mother today had once again not given my mother her intestinal medications as directed. She had also nearly given my mother the wrong dosage of her chemotherapy medication. Luckily, my father caught the mistake and the problem was resolved. We again expressed our concerns that their system for administering medications was failing, and we were promised they would get it fixed.

After our meeting, we returned my mother to her room. We rescheduled the family meeting with the nutritionist and the rehabilitation team for tomorrow morning. We did learn at the meeting that the rehab team is expecting my mother to be staying at Levindale for 4 weeks, and it seems likely that insurance will be approving all 4 weeks without argument. We are thrilled – that timing works out perfectly with my mother’s expected radiation completion date.

We helped my mom set up her dinner, and we arranged the television for her. My mom entertained a few phone calls, I checked her closet to see if she had enough clothing, and we arranged her tray with her phone, ipod, and other necessities before we left. I had my father follow me through the backroads to 70, and then we went our separate ways.

I arrived home to an empty house – Elliot and Micah were out visiting one of the possible rental houses (that house is a definite “no”). I also called one of the possible caretakers for my mother and set up a time for her to come meet our family. Elliot and Micah made it home around 8:00, and we spent some time with the kids before we put Micah to sleep at 8:30. I gave Maya a bath, and my mother called a few times to talk. She seems to be doing a little better with the phone now, so I think practice is helping. Maya fell asleep a little after 9, and I am hopeful that she will sleep through the night tonight.

Tomorrow, as I drive up to Levindale for our family meeting, I will probably be thinking of Becky again. One of the reasons I think about Becky so often these days has to do with a story her father told at her funeral. I remember him talking about how Becky loved to pay the tolls for the car behind her when they went on vacation, and I even remember her doing that once or twice when I was with them. That story really touched me, and for at least 15 years after Becky died, I liked to pay the tolls for the car behind me on every trip I took. I would tell the toll agent to tell the car behind me that it was a gift from Becky. It made me smile thinking of her, and sometimes I swear I could almost hear her raspy laugh, and I imagined her sitting on the ground near the toll booth, her legs straddled out in front of her with her feet touching, and a purple dress cascading around her.

My favorite place to pay the toll for the car behind me was just outside of Baltimore. I often drove north on 95 in the years after Becky died, and I remember thinking of Becky all the way up towards Baltimore, getting excited as I readied myself to pay those tolls. In fact, over the years, driving to Baltimore always made me think of Becky. Since the advent of the EZPass, I rarely pay the tolls for the cars behind me in Baltimore (I still do it every year on my trip to Florida), but I still think of Becky every time I drive up 95. For the past 6 weeks, I’ve been driving that route every day and thinking of Becky.

Today, I started to think about the ways in which we remember people, and how some memories are so powerful that they live within us and shape our lives. I think Becky paying the tolls for others is one good example – it made me want to do a random act of kindness by paying a toll just so that I could honor Becky’s memory. My Grammy lives within me through her sayings…she had all of these phrases she would say over and over again. Some of them, she would say when we were driving. There are some streets that I drive down and can hear my grandmother’s voice, almost as if she is sitting next to me in the car.

I have so many happy memories of my mother…it makes me wonder which ones will stand out most to me over the years to come…which ones will be the foundation for the stories I tell my children over and over again. I wonder if there will be that one thing, like paying the tolls, that I can do that will make me feel close to my mother, as if she is right there with me.

If any of you have a strong memory of my mother, or story that you think will stay with you forever, we’d love to hear it.

It is 2:30 am, and instead of pumping, I am nursing the baby again. She so rarely wakes up in the middle of the night like this! Hopefully, she’ll fall back to sleep shortly and sleep through the rest of the night.

As expected, today was an extremely long day for my mother, and exceptionally exhausting. She was a trooper, and truly hung in there. In fact, she did much better than we had anticipated!

The kids slept in for me this morning – Maya woke up around 8:30, and Micah slept until 8:45. We brought them both into bed for a little while, but we went downstairs before 9:00 am. My father and I spoke a few times this morning…I checked in with him to remind him about getting my mother’s medications for the day and a list of other supplies we might need, and he also called to tell me that the wheelchair transport was running about 30 minutes late.

Megan arrived a little after 9, and I took some time to shower and get dressed. While I was getting ready, I noticed a huge leak in our bathroom from all of the rain…part of the ceiling and the wall were falling down. Not really a surprise…we’ve had roof issues for a long time that were supposed to be corrected in our last renovation. Unfortunately, our contractors did a terrible job, and created some new problems and failed to fix some of the items. Luckily, this addition we are starting should address the problems. In the meantime, Elliot found the source of the leak, and managed to put a temporary fix on the problem.

Megan arrived at 9:00, and I managed to get out the door with Maya at 9:30. While in the car, I spoke to my father again, and I learned that he had not gotten all of her medications for the day. He did get a few of the critical medications (like the chemotherapy drugs), but he did not get her insulin, her Tylenol, or her medications for her intestinal issues. I was worried about getting through the day without all of her medications.

Despite the heavy rain and poor visibility, I made great time getting to Hopkins, and arrived there around 10:30. I called my parents and found them over at the Wilmer Eye Institute just as the appointment was beginning. We started out our appointment with a young doctor who asked a lot of background questions and did some initial screening. She decided to send Mom downstairs to have a field of vision screening test.

Initially, the doctor wanted Mom to transfer into a chair, but when I realized that it had limited support, I knew Mom would not be able to stay in the chair and hold herself upright. We used a bit of creativity, and managed to bring Mom’s wheelchair into the room. She needed a little help lining up with the machine (she had to lean forward and place her chin on a rest and stair at a dot in the center of the machine), but we got it working!

I helped support Mom’s back during the test while my father sat with Maya outside the room. The test was quite fascinating – my mother leaned into a half sphere, and with one eye covered at a time, she was asked to stare straight ahead at a center point and press a buzzer when she could see a light enter her field of vision. As mom leaned forward, this device that looked like a flashlight on a manual arm bobbed and weaved behind her. It was obvious to me that my mother could see nothing on the left half of the sphere – there was a clear center line, and for each eye, she missed the light any time it was on the left side of that center line.

After the field of vision test, we tried transferring my mother into the examination chair so that they could do another test. Unfortunately, she was not able to line herself up appropriately or see what she needed to see, so they were unable to conduct the test. We transferred Mom back into her wheelchair and returned upstairs.

At that point, she started to complain about being tired. We reclined her in the chair and gave her some water. We waited for another 15 minutes, and then went into another room with the primary doctor – Dr. Goldstein. She was wonderful. They were able to keep Mom in her wheelchair and do a standard vision test. What we learned is that with her glasses on, my mother’s vision is excellent – when she can find the letters, she can read them perfectly. The biggest challenge for my mother is putting things within her field of vision, and remembering to scan to the left to find things outside her field of vision. This problem is called neglect.

After the vision test, we were taken to meet with the low vision occupational therapist, Cat. While there, my father ran out to get us all some lunch, and we ate while we met with Cat. She was a huge help – she ran a number of tests, did a cognitive function test, and started to teach my mother a few techniques for scanning. She gave us a list of suggestions for helping my mother as well. For now, Cat does not think insurance will allow us to do therapy on an outpatient basis until my mother leaves the inpatient rehab at Levindale. She gave us a few devices to buy for mom in the meantime, including a talking watch and a light. Cat will talk to the occupational therapist at Levindale and give her some suggestions for the therapy, and we will start working with Cat upon my mother’s release.

After we met with Cat, we went down to radiation – we did not get there until 2:15 or so. Radiation was running very late, and it was nearly 3:00 before they took my mother back. We met with the nurse to discuss the fact that my mother has been getting headaches recently. We need to watch this carefully, because it could be a sign of brain swelling, and her steroid may need to be adjusted.

After radiation, we waited for the transport to head back to Levindale. It was nearly 4:00 before we returned. We learned that Mom’s roommate had checked out, and we were able to move Mom to the front bed in the room – good for her vision. Mom was extremely impatient while we waited for the room changeover, but we finally got her back in bed around 4:30. Jeremy had joined us and helped us keep Mom company while we waited. After the changeover, Dad left, and Jeremy and I stayed behind to help Mom with her dinner (she ate the chicken salad from Panera tonight). Jeremy did most of the helping – I sat and nursed Maya for the trip home.

Jeremy and I both left about 6:00 pm. On my way out, my mother called – she was just practicing with her phone! Cat had told me that I had picked a good phone, and we just needed to work with Mom on training and use of it. I made good time getting home, and spent the evening with the children. Micah went to bed early, and Maya initially fell asleep at 8:40. My mother called again to tell me she had been up and watching NCIS (Jeremy had turned on the tv for her) and she was going to try and sleep. I ordered a talking watch for my Mom and I found a few of the other devices Cat recommended today. We are going to try and start working on a crochet project, but I think I need to order one more device for my mom this week to make that possible.

Unfortunately, Maya woke up again at 9:15 and then again at 2:30. It is 4:00 am, and she is fussing again, so I’m going to go upstairs and try to nurse her to sleep. Mom sounded great, and did really well today. My Dad called this evening, and the nurses said she was having a good night. Hopefully, she’ll still be in good spirits in the morning!

Despite all of my concerns, today went surprisingly well! Both children slept through the night, and Elliot managed to leave the house this morning without waking the children. Maya woke up first, I think around 7:30, and I brought her into bed to nurse and sleep. Micah woke up around 8:15, with a very insistent “MOMMY, MOMMY, MOMMY, MOMMY” shout that would not abate. I tried leaving Maya to sleep in bed and take care of Micah, but the minute I got him downstairs, Maya started crying. I ran back upstairs to get Maya…and Micah screamed at the bottom of the stairs until I returned. For a few moments, I had a bit of a panic…how could I possibly handle an entire day like this?

I put Maya down on the play mat for a few minutes, and Micah joined me in the kitchen. I poured him a sippy cup of milk, strapped him into his high chair, and gave him cereal and a banana for breakfast. While Micah ate, I quickly ran downstairs to the laundry room and grabbed a clean outfit for him, and another one for Maya. I came back upstairs to find Maya crying, so I transferred her to the swing.

I spent the next hour trying to keep both children calm and occupied, and much to my amazement, it worked! Maya fell asleep in the swing, and Micah ate his breakfast, let me dress him, and was busily playing with his toys. I was on the phone with my friend, Heather, around 9:30, trying to figure out how to get upstairs to get showered and dressed when there was a knock on the door…it was our babysitter, Christin! Apparently, Elliot had mentioned to her that I might need help today, and although we never called her to make arrangements, she decided to come over. I was relieved to see her.

Just as I thought I had things covered, it dawned on me that Micah had swim class at 11 – I had completely forgotten! I ran around gathering our stuff…I put myself in a swim outfit and packed a change of clothes and some showering supplies. I asked Christin to change Micah into his swim suit and to pack up the clothes he was wearing and put his diaper in the swim bag. After I sat and debated the best plan of action for a few minutes, I decided that Micah and I would go to swim class, and Christin would stay behind with Maya. I asked Christin to pack up a sandwich, some cheese, fruit, and some cereal for Micah while we were out so we could easily give Micah lunch and leave right when we came home.

On the way to class, I spoke to my father – he said he would be leaving shortly to go see Mom. Neither one of us had received any phone calls, and my father had checked in with the nurses to make sure she was doing well.

Swim class was fun – we worked on floating, blowing bubbles, using our arms, climbing out of the pool and kicking. Micah had fun and was participating the entire class! He gets a bit scared when he floats, but he seems to calm down quickly if I sing to him. He is never afraid to put his face in the water or put his head under, and he really seems to love swimming.

After class, we gathered our things and went to shower. I quickly rinsed myself off and focused on cleaning Micah. He is not thrilled with the idea of a shower, so keeping him under the water is challenging. He did a good job, and put up very little fuss. I managed to get his hair washed, his body cleaned, and I threw out his swim diaper. I wrapped us both up in towels, and moved over to the dressing room area. As I was getting Micah dressed…I realized that Christin had forgotten to put a diaper in the bag, and I had forgotten to double check before we left! As I sat there trying to figure out a plan, I realized I had only one option – put Micah’s pants on, sans diaper, and hope he didn’t pee in his pants before I got him diapered. Once we were both dressed, I ran out to the car thinking “please don’t pee, please don’t pee.” I checked in the car, hoping to find an extra diaper, and much to my amazement, we had one! I managed to get the diaper on Micah while he was standing in the parking lot, strapped him into the car seat, and we went home. We took a quick pit stop at home so Micah could eat some of his lunch and I could nurse the baby, but we were back on the road by 12:30. I was lucky that Christin showed up today – there is no way I could have managed getting Micah to swim class without a little help.

The car ride was uneventful…Maya screamed, but fell asleep for a while, and Micah got bored about 30 minutes in and started sticking his fingers down his throat to choke himself. I hate when he does that! Instead of yelling at him (which NEVER works), I tried singing songs with hand motions. Micah started doing the hand motions and singing with me! We sang Twinkle, Twinkle, Little Star, then we sang If You’re Happy and You Know It, Clap Your Hands, and then we finished our trip with The Wheels on The Bus. Micah was actually doing all the motions, and he was prompting me with which sounds/motions he wanted to do next. It was so cute…I knew he could do the motions, but I always thought he copied me – I had no idea he knew the words and could do the motions and sounds without following someone.

We arrived at Levindale around 1:30…just as Arleen and Lorin got there. They helped me load the children into the double stroller and walk them inside. Lorin wanted to do much of the entertaining himself…you see, he is a G.I.T…Grandpa in Training! He kept telling me how he needed practice for his soon-to-be grandson. We got upstairs to find a small crowd forming…Diane and Joey and my father were already there. Arleen and Lorin brought egg salad, rolls, and cucumbers for my mother to eat (yum!) and Lorin, of course, made my mother a smoothie.

My mother’s room is small, so we ended up transferring her to a wheelchair and bringing her down to the sitting area to entertain visitors. Gail and Steven also joined the crowd, and they brought my mother chicken salad from Panera. She was there for a little while before she had to attend physical therapy. While everyone kept Micah occupied, I joined my mother for her therapy.

I was a bit frustrated to learn that this therapist (who is not my mother’s primary therapist) thought my mom was paralyzed on her left side…and had not been bothering to work that side much. I had my mother demonstrate that she had significant use of the left side, and explained that she suffers from neglect (the brain forgets the left side) not paralysis. Another problem – apparently, they think my mother is unable to keep up with the exercise because she tends to close her eyes a lot. The minute they lay her down on any equipment, she closes her eyes. I think some of it is her vision, and some of it is comfort. I also noticed that the minute she closes her eyes, they ask her if she wants to rest, and she responds “sure.” I think my mother believes she is cooperating with whatever they want her to do, but they think she is quitting or too tired to go on with the therapy. Again, I explained to the therapist that she was agreeing with him, not in need of a rest. He worried about her and put her on a heart monitor – he thought she was faint or weak. Once he realized that she was fine, he pushed her a bit harder – she sat upright for over 10 minutes.

I told him that she had been walking at Hopkins with support – that the biggest challenge with walking was keeping her left leg from buckling, but that she had a lot more strength and needed help utilizing it. After speaking with him, I think they have not done such a great initial assessment of her capabilities, and now I’m even sorrier that I did not go up to Levindale in the mornings last week to meet with the therapists. I need to figure out how to switch shifts with my father so that I can be there to meet the therapists – someone from the family should have been there during the evaluations. I know that we will get to meet with them on Tuesday for a “care plan meeting,” but we will be almost 1 week into therapy at that point. As we have learned from our experience at Hopkins, our ability to get any more time extended in therapy depends on these evaluations, and right now they do not think my mother is capable and participating in therapy.

After my mom’s therapy session, we went back upstairs. My friend Heather joined us for a visit, and we had a nice time. My mother went back to her room briefly, and then they brought her back out to the sitting area. The therapist had asked me to keep her in the chair for another hour after therapy. From the moment she came back upstairs, however, she kept asking to go back to bed. I know she tires, but for the most part, my mother wants to go to bed because she is anxious and afraid – she has become fearful of being anywhere but in bed. That is perhaps our biggest challenge right now – she just cannot stay in bed all day. It is bad for her physically, and the more time she stays in bed…well, the more time she wants to stay in bed. After her surgery, she was able to be seated all day long, and was more interested in getting up and about. Now, she spends most of her day lying down – it is moving backwards. She says she wants to travel and do things when we get home, but if we cannot convince her to attempt a day out of bed, well, she will never be able to do any of the things she wants to do. I am worried that there are 2 more weeks left before we are even thinking of taking her home – and if she spends those next 2 weeks lying down, she will become weaker and weaker and become unable to leave her bed. She still has plenty of time left to live, and I’m starting to feel like she is sitting around in bed waiting to die instead of living during the time she has left.

I know that sounds like a harsh statement, but I’m frustrated. Every day, she asks me if I’ve brought her the things she wants in her coffin. Every day. Her latest obsessions are a picture of the family and the afghan from the family room. Today she asked me for the afghan about a dozen times, including several times when we had visitors present. When I ask her if she needs it because she is cold, she says “No, to take it with me.” Instead of being in the moment and interacting with friends, she was asking me to bring her things for her coffin. Aside from the fact that there will be no room for her in her coffin with all the things she wants to take with her, or that her family might want some of those things to keep here with us so we can think of her and hold her close, I don’t understand why she needs those things NOW. If it will bring her comfort, I’ll bring her those things from home, but this is not about comfort. Frankly, I don’t think that Levindale is the ideal place for her cherished personal belongings – things go missing, get ruined or soiled and lost very easily there, and I would rather save the afghan for her use when we bring her home. But, my mother keeps trying to pack her bag to die, and I am frustrated, because she is not dying yet.

There is a line from the movie The Shawshank Redemption that seems appropriate to me right now…Morgan Freeman’s character says it a number of times, but the critical moment is after he is released from jail and is contemplating suicide. He says there are two choices, to “get busy living, or get busy dying.” I think my mom needs to make a choice here, and it is time for her to get busy living. I’m not saying she doesn’t have things to decide, but we’ve done most of the big things already (like funeral planning). And now is the time for her to LIVE the rest of her life, not wait to die. How do you help someone live the life they have left?

By 3:45, my mother was unwilling to continue sitting in her chair – we made it 45 of the 60 minutes she was supposed to sit. She transferred back to bed and just sat there, not really talking, for the rest of the afternoon. Elliot showed up around 4:00, and we kept the children busy. By 5:30 or so, we were packing up to leave for home. Elliot took the kids and I went with Heather out to dinner. It was my first child-free dinner in…well, probably more than 3 months. We just grabbed a quick bite of Italian food for dinner, and I got home in time to nurse the baby and help put Micah to sleep. Both children cooperated, and we had a quiet house by 9:20 again.

Tomorrow, we have our appointment at the Wilmer Eye Institute – I am hoping that they can do more to improve my mother’s vision, and possibly offer up some therapies – even just mobility and orientation training (which would help her orient herself with her more limited scope of vision). I think tomorrow will be a long day for my mother between the early morning appointment and the radiation. I hope it goes smoothly – with so many hours away from Levindale, I’m concerned about them remembering to give us all of her medications and getting them administered as needed. Missing doses can really cause some issues for my mother.

Most of the week, they plan my mother’s therapy in the morning. We then head to Hopkins around 12:45, and my mom is usually back by 3:00. Visitors are welcome to stop by…I would guess that after 3:00 most days is really the best time to catch my mom at Levindale, but she does have some time in the mornings and lunch time.

Wow…9:30 pm, and I’m home and have 2 sleeping children. I feel like the luckiest person in the world! I’m sure this bliss won’t last (Maya has not been cooperative about bedtime the past week), but I thought I’d take a few moments and try and blog now.

Once again, Maya woke up extremely early again today – 7:00 am. I was still downstairs, trying to finish up my post, so please excuse all the typos – I was trying to type one-handed while I fed the baby. Maya and I snoozed on the couch for a bit, and Micah woke up around 8:45. We took care of breakfast, dressed the kids, and Elliot took Micah to services while Maya and I drove up to Levindale.

I spent most of the trip trying to figure out tomorrow with my brother and sister-in-law. Elliot is leaving at 6:00 am, and I will have the children by myself all day long. I was toying with the idea of leaving him with them for a few hours, but that is turning out to be much more complicated than I thought. Instead, I’m going to try and handle them on my own. It doesn’t sound like that big a deal, but I’m a bit concerned about managing Micah and the baby during my visit with Mom. I guess we’ll see how it goes. There should be a few other hands around to help keep Micah in check, and if he melts down, I’ll just have to leave early.

When I arrived at Levindale, Jeremy, Jen, Paige, Peyton and my father were all there in the cafeteria with my mother. We joined them and spent a bit of time together. After an hour or so, my mother said she was tired and needed to go back to bed. Jen, Jeremy and the girls said goodbye, and my father and I took my mother back to her room.

Today, my mother was complaining a bit that the skin on her head hurt. This is a common side effect of radiation – the skin can feel a bit raw and burned. We requested some cream, and they have placed an order for Aquaphor to rub on her head. We will start applying it daily after each radiation treatment to try and help the skin heal. We will ask the radiation oncologist if there is anything else we should use on Monday. Additionally, I noticed yesterday (and today) that my mother’s hair is starting to fall out. By the handful! I was stroking her hair today, and it was coming out in clumps. I think she is going to look gorgeous bald! She keeps joking that she now has a big “C” on her head (the scar from the surgery) and she’d like to draw a matching mirror-image “C” on the other half of her head…maybe make them look like the Chanel or Coach logos…then paint her scalp gold or other vibrant colors. I might just have to get some fun sprays when radiation is done and she has a chance to heal up. Perhaps just in time for Halloween!

After we returned to the room, my mom had a few visitors…Suzette, Joel, Bonnie and Pat! Pat brought an amazing gift from my mom’s co-workers…several different gift certificates! Thanks to all of you at the Montgomery College Libraries who participated (and also for the beautiful flowers that were sent to us back at Hopkins). We’ll use them to bring in some good food for my mother while she is at Levindale (we are already planning to bring her a chicken salad sandwich from Panera tomorrow).

Pat, Bonnie, Suzette and Joel had a wonderful visit. The best part for me? I got to sneak away for about 45 minutes without Maya to go visit my friend, Jen, who is currently on bedrest in the labor and delivery ward at Sinai. I returned around 4:00, just in time to say goodbye. I stayed for another 45 minutes or so (just long enough to feed Maya and give her some more cuddle time with Mom). Dad stayed behind to help Mom with dinner.

When I arrived home, Elliot and Micah were still out. Today was Taste of Bethesda…I had forgotten all about it, and I’m sad to say that I missed it this year. After services, Elliot took Micah over to the open house at the Bethesda Fire Station and he got two balloons and a fire hat! Then the two of them went to a bbq at one of Elliot’s friend’s houses. They came home around 7:00 pm, and we spent the rest of the evening relaxing together. Micah wore his fire hat and played with the balloons most of the night, so I think his visit to the fire station was a smash hit!

Perhaps the best part of my day…Micah actually said “I love you, Mommy” today! It was prompted…I said I loved him, and then asked him if he could say “I love you, Mommy” and he said it right back to me (followed up with a hug and a kiss). That has to be one of the most beautiful things I’ve ever heard! I then asked him to say “I love you, Daddy” and he did that, too. Maya also hit a big milestone today…she was able to hold a sit!! She was sitting up for about a minute – I could not believe it. Micah was definitely older before he was strong enough to hold a sit – maybe 4 months or so before he could hold a sit briefly.

Overall, today was a good day. My mother seemed to be in good spirits and feeling well. We had a wonderful day with visitors, and I actually got home at a reasonable hour, spent some time with my children, and now have a quiet evening at home with sleeping children. Why is it that I’m waiting for the other shoe to drop? Hopefully, they’ll both sleep through the night, and Elliot won’t wake them up when he leaves at 6:00. I hope tomorrow is another good day!

Often, I think events in life are best compared to a marathon, not a sprint – it is all about endurance. Marathon runners talk about the different phases of the run. At the start, the task can seem overwhelming; it takes the first few miles to feel out the road, loosen up, and get into a groove. During the next phase, they coast on autopilot, able to find comfort in the repetition and steady nature of the run. Somewhere towards the backend of the run, they hit a “wall” – mentally and physically. It always seems impossible to continue beyond the wall – it is the moment when many runners quit. But the thing about the wall is that if the runner can figure out how to push past it, they usually find their second (or third) wind to carry them on to the home stretch. It isn’t always pretty – sometimes they need to slow things down or even walk, but getting beyond the wall is all about determination and willpower, refusing to quit.

I think this week, I might have hit my “wall.” The daily grind of the trip to Baltimore and back, the screaming baby on the trip, the frustration of the move to Levindale and starting all over again with the nurses and doctors there…some days, it feels like this bad period will never end. Most people tell me to stop…just give up on the run because it is “too hard” or “too much,” but, like most marathon runners, I know that if I just hang in there and push through the wall, I”ll find that second wind, and when I reach the finish line, I will be proud that I hung in there.

I have definitely missed the staff at Johns Hopkins this week…while I did not always trust the doctor there, or agree with his decisions, the nursing staff was incredible. I felt comfortable that they were administering medications on time, that they cared about my mother, and that she was getting the attention she needed. I especially knew not to worry if Donna, Jeanette, or Philadelphia were around – they made sure to give my mother some personal support and comfort, too, and I think we have yet to find that at Levindale.

Today was overall a good day. Maya woke up around 8:30, and I nursed her. Micah woke up a little while later, and Elliot got him and brought him downstairs. We fed him eggs for breakfast, and we all hung out and watched a little tv. Elliot had decided to cancel our babysitter, Christin, for today so that he could bring Micah to synagogue for Simchat Torah. After Elliot and Micah left, Maya and I got ready and drove to Hopkins to meet my parents.

While I was waiting for my parents, I received a call from one of my mother’s cousins, Bernice. It was wonderful to hear her voice, and I had not spoken to her in many years. She told me some stories of my mother and grandparents, and I was in tears as I thought about them and missed them terribly. I promised her that I would have my mother call her back to talk later in the day.

My parents arrived as I was finishing my call with Bernice. Radiation went quickly again. Elise stopped by for a quick visit, too. My mom was also asking questions about going home, so we had another discussion about our plans for that. While we were there, I sent my brother a text asking if he new the radiation tech’s friend…turns out, it is the person my brother supervises! Small world.

We all headed back to Levindale, and we arrived there around 3:00. I had a chance to speak to the nurse coordinator again to clear up a few more concerns, and I got a copy of my mother’s therapy schedule for the weekend. She has therapy at 11 and 1:30 on Saturday, but is free the rest of the day, and Sunday therapy is in the morning.

My mother was quiet again most of the afternoon. We chatted a bit, she called her cousin Bernice, and we took some video of her with Maya. She gave a bit of advice, and she talked a lot about how much she loved her (and the other grandchildren) and she told us what she wanted for them. I hope that we can make more videos of my mother – I think she has things to say to all of us, and I know that I will value seeing her speak and hearing her voice in the future. When my mother was doing her video with Maya, I realized that she called Maya sweetie pie and baby cakes – two of my nicknames for her. I realized that most of the things I call my children I stole from my mother…boo, punkin, sweetie pie, baby cakes, bug. My mother used to always call me “bug” (short for love bug) or punkin (a play on pumpkin pie). She would say “whatsa matter boo” or “whatsa matter bug” when I was crying or upset, and she would say “c’mere babycakes” when we cried. I guess from all the years of hearing her say that to us, to the babies, etc., I stole it all from her.

I stayed with my mother until dinner time, and left around 6:15. The ride home was a little longer today, but not terrible. Micah, Elliot, Maya and I had a nice evening together. Micah is getting so big – he now says “uh uh” and shakes his head “no” when he does not want something. I probably taught him that accidentally.

Maya has had a rough night…she just does not want to go to bed anymore. I nursed her to sleep at 9, but she woke up again. She fell back asleep around 10, and we put her in the swing for a while before moving her upstairs. She woke up early this morning, and I’m late posting the blog becuase I’ve been nursing her.

I guess I can say that it feels like I might finally be pushing through the wall. In my head, I’ve started the countdown. Thirteen more days until we can try and bring my mother home again (or at least bring her back to Montgomery County). Twenty-five if they choose to extend radiation. In that time, we have to finalize renting a place and line up caretakers for my mother. I think we need to start making phone calls and conducting some interviews, and generally getting ready. We need to have an address so that the equipment we need can be ordered and delivered.

I hope it is my only wall. I know I have the home stretch in sight. We just have to hang in there a few more weeks to get there. I have no illusions about what will happen when we get home. What I do know is that we can stop all the driving, that we can give my mother one-on-one care with someone we can educate and my mother can begin to trust, and we can all start feeling better knowing we are together again. As my mother said today, her whole body just relaxes when we walk in the door – she physically feels better just knowing we are there. The thing is, so do I. I worry that Mom is scared, or that she cannot find her call button, or that she is in pain, or that the nurses do not know the routine and are messing up her medications again.

There have been many times in my life when this comparison has proven quite apt…especially now. I can remember my mom telling me at challenging times in my life that bad things always end…you just have to hang in there long enough for them to run their course. They don’t always end the way we want, and we cannot always go back to where we were, but life constantly moves forward and changes, and there are always new and good things ahead. So, I’m hanging in there…waiting for the new and good things ahead.

I also just wanted to thank a few people this week…Rochelle & Scott for sending a beautiful bouquet of flowers to my mom at Levindale, and Tammy who sent us cookies, and my friends Dorann, Dawn, Ellen and the Stephanies who have bought me a block of “me” time.

The saying is “no news is good news,” which I suppose makes today a good day. I haven’t heard anything about my mother overnight tonight, so I hope that means she is having a good night.

I never made it to bed last night…after all of the commotion, I sat on the couch waiting for the last call from my father that he made it home. When he didn’t call, I started to worry, but I was afraid of calling him and waking him up, too. I turned on the tv and sat and watched for a while. I must have dozed off around 7:30 or so, and the baby woke up around 8. Elliot brought her downstairs to me, and I slept on the couch a bit while nursing her. Micah was still asleep at 9:00 when Megan arrived, and he slept another fifteen minutes.

I made Micah eggs for breakfast, and he actually ate most of them. Megan helped me get the children dressed, and watched them both while Elliot and I showered and got ready to go. It was raining and disgusting outside, so Megan decided she would take Micah over to Laura’s house for the day to play with Merrick and Addie (my friend Niki’s children). After they left, Elliot, Maya and I got in the car and drove to Hopkins.

I got an interesting phone call this morning from a company who provides private companions and nursing aides at Levindale. We talked for a bit, and I asked the man to send me information – if my mother is repeatedly having issues, we may need to send someone to help in the evenings/early mornings, or possibly overnight. The company also provides caregivers for the home, so it is never a bad idea to have the name of a service.

The weather was terrible, but we still made it to Hopkins in good time…before my parents. Along the way, we learned that Jeremy would not be able to join us for a visit today…he was handling a huge flood in his basement. Ugh!! We tried parking at the valet service at the Cancer Center today, and it went smoothly. We waited in the family waiting area for my mom to arrive, and they got there around 1:35 or so. We were able to chat for a bit before the treatment. My mom seemed comfortable – no intestinal issues – and she was sitting up straight and doing well in the wheelchair. My dad had requested a Tylenol for my mom before they left, and that seemed to be helping, too. They took her back around 1:50, and we called for the return shuttle. Treatment went quickly again, and we had a moment to check in with the radiation nurse. The radiology techs asked us if mom would be doing an extra 7 days of treatment, and we were surprised. Apparently, it was authorized in the computer as a “possibility” but both the doctors and the nurse had previously told us mom would max out on treatment after 4 weeks. We will see how it goes, but we’ll do every minute of treatment they suggest, especially if mom continues to tolerate it well.

In other good news, my father told me today that their long-term care insurance received the paperwork and actually authorized my mother, effective immediately! No waiting period, no arguments…we can now make claims against the policy for anything we need that is not covered by insurance, so that is a huge relief.

After radiation, we decided that I would ride back in the transport with my mother and my father and Elliot would drive separately with the baby. Traffic was heavy, but we made decent time getting back to Levindale. Much to my surprise, my mom was willing to sit in the wheelchair for a bit longer after we returned.

Just as we got back to her room, the nurse coordinator and the social worker approached us to set up a meeting to discuss some of the concerns we had and how we can develop a plan to improve my mother’s experience. I have to say, I was impressed. It is not often that facilities come to you when there are problems – it is often a battle to find someone there even willing to talk! I had planned on reaching out to the nurse coordinator this afternoon, and it just made things easier when she came to us.

My mother, father, Elliot and I met with them for about 45 minutes. My mother was able to express her concerns, we were able to discuss the medications and insist that the nurses administer the medications (even the ones written “as needed”). We talked about the different consults we were expecting, and we devised a plan for moving forward. In addition, we had the opportunity to talk about my mother’s vision loss, and ways we can set up the room to make the experience a little less scary for her. They immediately agreed to help – first by changing the nurse call button in my mother’s room to something easier for her to find and operate. Second, they agreed to move her either to the “A” bed in the room (near the door) when one opens up or into a private room. From the front of the room, my mother would be able to see the door and the clock – both things that would make her stay a little less frightening.

Elliot and my father left shortly after the meeting, and I stayed behind with my mother. On the way home, Elliot detoured my father to pick up one of our building permits from WSSC, so it looks like we are fully authorized to start renovating the house now.

Mom slept most of the afternoon – not surprisingly, she was tired after the long night she had. The afternoon was relatively quiet as my mother slept. I was surprised that she did not have any therapy sessions scheduled – I will be looking into her schedule tomorrow, and trying to figure out how much therapy she is getting and what times (and see if they will give us a daily sheet).

Things seemed to go a bit more smoothly in the afternoon. The nurse today was nice (but I had to correct her several times on HOW to apply some of the medications). They seemed to remember and bring all of her medications (some a little late), but everything was being given. All I can say is some nurses don’t seem to follow directions – today’s nurse actually took a suppository, opened it up, and tried to use the medication as a cream instead.

The best news of the afternoon? Maya laughed! Not just a smile and a silent laugh, but a full-out rolling giggle with sound (and even a snort). It made my heart sing, and Mom was able to listen to her, too, and it gave my mom a huge grin. It is so wonderful to watch Maya’s personality emerge.

My mother’s dinner arrived around 5:30, and I left around 6:15. Once again, I made it back home in under an hour. Elliot and Micah left for Simchat Torah services tonight – Micah was adorable as he left the house clutching his Torah. During dinner, I sang to him a few of the Simchat Torah songs (“Torah, Torah” in particular) and he was clapping and singing, too! While they were out, Maya spent time playing on the floor – she was chatting and laughing and moving all about, and it was wonderful to see her getting that time to explore.

My mother called this evening to tell me that all was well. She was a bit confused about the time of day – she thought she had just woken up and was ready for therapy. I explained that it was nighttime, and that I had left about 2 hours before and would be back in the morning. She said she was fine and would see me in the morning.

It was immediately bedtime for Micah when they came home, and I had already put Maya in her pajamas and swaddled her tight. Micah cooperated with bedtime, but unfortunately, Maya did not. She fell asleep initially at 8:30, but she just would not stay down. We tried moving her at 9, and again at 9:30, and again at 10. All she wanted to do was snuggle and nurse. Finally at 11, I gave her to Elliot and said I was done nursing her because she was no longer hungry and I was too exhausted to do it for another minute. As long as Elliot stood and walked with her, she was quiet, but she certainly refused to go to sleep. I think it was around 12 before she finally crashed. Her schedule has been out of whack since the late night transfer to Levindale. I hope we can get her back on track soon.

I’m hoping to go visit my friend at Sinai hospital tomorrow…or possibly this weekend. I cannot bring the baby over, so I have to go at a time when someone is around to keep an eye on the baby. My next big hurdle…Sunday. Elliot is going to be gone from 6:00 am until 4:00 pm, and I have to figure out how to take care of 2 children all day and visit my mother. I may need to take Micah to Jen and Jeremy’s house and leave him there, if we can figure out how to plan that with their babysitter.

Oh, and if you are still out there, keep the messages coming! We are still reading the Journal and your messages to my mom each day, and she loves hearing them. In fact, we have more time each day with the transport to and from Hopkins. She is also receiving visitors again. I do not know her exact therapy schedule yet, but evenings are definitely good, and there is probably time during the day, too. We are gone Monday through Friday from about 12:45 until 2:45 for radiation, and weekends she just has therapy (although far less than she had at Hopkins each day). There are a few guest areas, and if there is more than one visitor, we should be able to move mom into a wheelchair and go sit there.

Crap. Literally, crap. I’m so sick of crap I cannot see straight. My mother is once again in agony over…crap. It is 3:00 in the morning, and my father is now driving up to Hopkins to sit with my mother while the staff there tries to figure out what to do for my mother’s pain and discomfort. I’m so angry that they cannot get this problem resolved and that when I explained to them last night and today about not skipping any of her medication that they ignored me.

My father called me about 15 minutes ago to tell me that her nurse, Richard, had called and that mom was in agony. Dad asked me to give Richard a call on his cell phone to go over what she needs. Since my mother was in pain earlier today when we visited, I was sure what was happening with her. I called Richard and explained to him what medications to give her. Immediately, he copped an attitude with me, telling me he’d already given her a bunch of medications. He told me that she wasn’t having the pain I mentioned, so he had been pumping her full of stool softeners (great…she might end up with a different type of problem tomorrow). I explained to him that all day she has been having pain from irritation, and what she needed was a specific cream that was on order and tylenol. I could hear the pause as he realized he had not given her that medication (and she always ends up in pain when the miss a dosage). He said to me he knew what he was doing, and he’d given her that stuff already. I was certain that he had forgotten those medications (since he thought she was cramping and they haven’t gotten the orders for the different medications written properly yet).

I tried my best to turn Richard from an enemy into an ally. He was frustrated because he was unable to help other patients because my mom was taking up so much of his time. I explained to him that the transfer and the missed medications likely set this off, and I understood the frustration because we have been dealing with it for several weeks now. I again reminded him of our conversation last night when she arrived at Levindale, and said that while he thought I was being overprotective, I was afraid of this happening again. He said he understood now, that in all his years he had never seen anyone in so much pain, and he was now a believer that my mother had a serious problem. He also requested a GI consult and a scan for tomorrow, so perhaps they will now take my mother’s problem seriously.

I said I would be happy to talk to my mother and see if I could calm her down over the phone if he would help her answer her cell phone. Instead, he walked down to her room and called me back from her cell phone. It was on speaker, and I asked her a few questions about what she was feeling. As I suspected, she was not feeling backed up as Richard thought, but she was experiencing pain and irritation. I asked her if Richard had given her the medications that helped (Tylenol and a special pain suppository) and she said no, he had not. It was probably not a good idea to piss off Richard that way, but I knew if he heard our conversation I could get him to administer the medications she needed. I told her to request those two medications, and she did. It took Richard another 20-30 minutes before he came back with the medications (and I think he was grumbling because I hit the nail on the head) and gave the medications to her. I heard her put her earphones in and I told her to call back if she needed me. I guess we will see if this works.

Today has been…awful. And now it is pouring rain outside, and I’m worried about my father driving by himself in the middle of the night. I probably should have been the one to go up since I’m better with nighttime driving. I’ve called him a few times to check on him because I hate when he drives alone at night – he tends to get sleepy on the road during the day, so driving at this hour truly worries me.

I thought things were going smoothly when I woke up this morning. Maya and Micah both slept until after 8:15. I brought Maya into bed to nurse first, and Micah woke up shortly thereafter. Elliot brought Micah downstairs while I finished nursing Maya. Megan arrived at 9:00 and helped us with feeding and dressing the children.

I spoke to my father and he was driving up to see my mother. I told him that I was concerned that they had not given mom any of her medications for both her bowel issues and her steroid, so I asked him to check and make sure about both of those medications when he arrived. At 9:45, Micah and I left for our Kidville class – the Big Muscle Builders class! It was the first time this semester I was able to attend a class with him, and I think we both needed some bonding time. Micah was a bit reticent to join the class at first – it took him 10 minutes to warm up and participate. But when they brought out the blocks and the obstacle course, he was ready to play! Much to my surprise, he was playing well with the other children in the class. We ended class with two songs…”Tick tock cuckoo clock” and “Goodbye friends.” During both songs, Micah did the hand gestures and even sang a few of the words! He had a HUGE grin on his face while we sang.

After class, I was able to fit Micah in for a haircut (the woman at Kidville is wonderful…she has a fire engine seat and a dvd player with Elmo, so what more could Micah want from a haircut?) and he was more upset when the haircut ended that he had to stop watching Elmo. While he was getting his hair done, I signed the contract with Kidville for Micah’s second birthday party. Yes, it is a bit early to be planning for a December party, but we have a big discount that we needed to use that expires on September 30, and we decided it would be a fun place for Micah’s birthday party. I sure hope we are able to go ahead with our plans in December.

After we finished at Kidville, Micah and I ran across the street…to Georgetown Cupcake! For those of you who don’t already know it, Elliot and I are a little obsessed. We think their cupcakes are delicious, and we love some of their flavors in particular (I’m partial to the chocolate squared and we both love the chocolated salted caramel flavor). Perhaps our favorite thing about DC Cupcakes is their free flavor of the day. Yes, free. If you become a “fan” of their Facebook page, every morning they post their free flavor of the day. If you go to the store and request it, the cupcake is yours (while supplies last)! If you can get their before 11:30, they usually still have free cupcakes. Today’s flavor was DC Cupcakes milk chocolate squared, and I was able to secure 2 cupcakes today (it is only 1 per person, but they counted Micah, too). By the way…it was delicious, too!

After getting our cupcakes, Micah and I came home. Maya was napping, and I waited for her to wake up. I spent a bit more time with Micah, and spoke to my father. He told me that when he arrived at the facility, my mother had a headache. He checked at the desk, and he learned that I was right – they had failed to give mom her nighttime AND her morning dosage of steroids, and she had a headache because of brain swelling. He made sure they brought her the steroids, and we waited. I nursed Maya around 12 and talked to my father several more times, and mom was doing okay, but she was complaining that her stomach was bothering her again. I asked Dad to request a GI consult for her and an endocrinology consult (I’m not happy with how they changed her diabetes medications) and I suggested that he try to talk to the physician when he came to see mom.

They gave her the chemo medications on time (probably thanks to my father’s presence). Maya and I left for Hopkins around 12:30, and I managed to arrive at the radiation oncology appointment before my parents got there. They arrived exactly at 1:45, and my mother was cramping and in pain. We had her radiation nurse, Ron, assist her in the bathroom, and she immediately started feeling better. They took her for radiation right away, and we had a brief meeting with Dr. Kleinberg (I asked them about her missed dosage of steroids). Because my mother’s headache had resolved, they decided not to give her a supplemental dosage of steroids. Right at 2:15, my mother was able to head back out to meet the transport, and I stayed behind for another 15 minutes to nurse Maya.

I arrived at Levindale a little before 3:00. When I got up to my mom’s room, my parents were not back. I called my father to figure out where they were (and he answered and hung up on me telling me he was with mom). I called back to find out WHERE he was with mom – I thought perhaps they were somewhere in the building and I could get to them. He said he was in the ambulance with her and she was in excruciating pain again. When they got to the room, my mother was crying. It took us a while to transfer her to the bed, and even longer to get her nurse there with her medications.

Unfortunately, they had not been giving her any of her medications to manage her bowel issues. I was livid – there were orders from Hopkins about what to give, but apparently the physician’s assistant did not translate the orders appropriately. I am so frustrated that every time we are dealing with someone new, they seem to think we are kidding about my mother’s bowel problems. Pain management and consistency has been the key, and whenever they fall behind on the medications, things go to hell in a handbasket fast. It is also hard for the nurses to understand the urgency of the situation when my mother complains about pain. I finally had to throw a fit to get the nurse to come in and explained to her what medications my mother needed. When she finally realized my mother was crying and saw her writhing in pain, she moved a bit faster. It took another 20-30 minutes before she requested all of the meds from the pharmacy and had them delivered and administered. My father stepped out for a bit to meet with the woman from admissions and fill out some paperwork. When he returned, my mom was feeling much better, and my father left for the day.

I sat down with my mother’s nurse, Camille, and I went over all of the medications/issues with her. I apologized for how we first met, asked if we could start fresh now that things were calm. I re-introduced myself, and she got a copy of my mother’s medications. I gave Camille the background on my mother’s bowel issues, and explained that when there is any divergence from the protocol, my mother ends up in excruciating pain, and it becomes an emergency. I asked her if she could help make sure that the orders were all entered properly into the system so that everyone knows how to stay on top of things and prevent any more emergencies. She was quite kind, and we identified what other medications were not being given, and she did what she needed to get them on order from the pharmacy. We also discussed my concerns over Mom’s insulin dosage and I gave her the sheet from Hopkins.

Camille tried to get everything straightened out, and she was extremely responsive. My brother arrived in the afternoon, and the two of us sat with mom. The speech language pathologist came by to do her evaluation, and it seemed to go well. My mother was very subdued most of the afternoon – wanting to sleep after her exhausting trip to Hopkins and back. I also think the brain swelling from earlier in the day had her exhausted.

My mom’s dinner arrived around 5:15, and my brother and I helped her eat. The doctor finally came by, and we talked about my concerns. I asked him to make sure the orders were written properly for my mother’s medications, and we talked about the insulin discrepancy. He did not feel comfortable following the orders from Hopkins, but he realized her blood sugar is back out of control again. I asked him to set up an endocrinology consult, and he reluctantly agreed. I also requested a GI consult, but he seemed less concerned about that problem. The little hairs on the back of my neck stood up…kind of a warning sign that we would be having bowel issues before they got on board to help.

Jeremy had to leave a few minutes before 6, and my mother needed help sitting on the commode. We got the nursing aides to come help mom while I finished talking to the doctor. He then went in to examine her, and she also explained about her bowel issues. He assured us that they had it under control, and they were quite familiar with these types of issues. Astutely, my mother told him she’d heard that before.

While we were meeting with the doctor, the nurse coordinator came by to check on us. She was wonderful (and like everyone else, fell in love with Maya). I expressed my concerns again about the insulin changes and my concerns about the missed medications, and she assured me that things should be working smoothly now. I told her that Camille had been a wonderful help today, and that I was hopeful things would get easier. I finally left around 6:30 – my mother seemed to be resting comfortably. I checked with Camille, and she promised they would give my mother the rest of her medication tonight. I thanked her again, and I headed home.

Much thanks to my friend, Jennifer Berkeley, for her wonderful backroad directions – I managed to make it home from Baltimore in less than an hour in rush hour with her ingenious route. So, if anyone needs to travel up there (or back) from Montgomery County during rush hour, let me know and I will send you the directions! (Side note…it seems the man my father and I saw being attacked last night did eventually stumble into Sinai emergency – because Jen was brought in to consult on a case of a man matching my description who checked in shortly after we reported the attack). Unfortunately, Maya screamed the whole way…partially because she hates the car, but partially because I could not give her the reflux medication on time (Elliot inadvertently removed the medicine pouch from my purse and left me without her medication).

I made it home fairly early tonight and spent some time with Micah before his bedtime. We gave Maya her medicine, and she immediately returned to “happy baby” status. My cousin, Jodi, arrived around 8:45 for a visit (and brought us some dinner). It was so nice to sit and catch up with her – I miss seeing all of my friends and going out. Two more weeks, and hopefully when we have mom back down here my world can normalize again.

Great…just got another call from my father (it is now 3:45 am). Apparently, somehow he missed a road block on the highway, and he was picked up by the state police. He is not allowed to continue on the road to my mom because there is a one-hour backup due to an accident. Just our luck! I asked him if he explained the situation to them and whether they could help him get to her. As he started talking to me about what happened, all of the sudden he started yelling at me to be quiet (hello, I wasn’t the one talking!) because the state trooper was back, and he hung up on me. I decided to call Richard, my mother’s nurse, and ask him how my mother is doing. She is currently resting comfortably.

Can I just say how angry I am that all it took was giving her the medicine as prescribed to resolve the issue? I called my father back and told him to turn around and go home. He would have to go all the wack back to 495 and then up to 95, through the city and then out to 83 to get to her with this road closure – I don’t think he would be there before 5:00 am anyway, and she seems to be doing okay now.

Elliot and I tried relaxing after Jodi left, but Maya just would not cooperate. She kept waking up every time we put her down into the bassinet – she just wanted to sleep in my arms. We finally got her into her bassinet at 11:00. I took a nap for two hours, and then woke up when Elliot went to sleep. I had just started writing my blog when the phone rang.

So, I’m sitting here waiting to confirm that my father got home safely. I have spoken to him several times – at last check, he was about 15-20 minutes from home. I have a feeling he won’t call me when he gets back home, and I’m not sure if I should call him again – I don’t want to wake him if he is asleep. I hope that tomorrow my mother is feeling better and that we can get ahead of this pain and get her feeling better. What a day!