So, I’ve been thinking about how to thank all of my family, friends, well wishers, all those who have responded to the blog, and all those who have visited or sent thoughts, prayers, gifts and well wishes. Thank you does not begin to cover my feelings. It is touching and moving in ways I could not begin to describe. Best I can do is say thank you and hope you will continue.

Your encouragement is enormously important and I look forward to having the blog read to me on a daily basis. As I look at the names of people who write in, I think of the hundreds (if not thousands) of years I’ve known all of you. It is so special to me that you all care enough to be in contact. Your generosity and kindness and time has forever changed my life.

I’m looking forward to getting back home. I am a changed person, both physically and mentally, and I hope you will all understand and help me. Thank you, thank you, thank you for the encouragement and well wishes. Keep ’em coming – I need all of them.

Breyer’s Chocolate Ice Cream. My mom, grandmother and I went through a slight obsession with Breyer’s Chocolate Ice Cream. I think it was back in the 90s, probably one summer when I was home from college and my grandmother was visiting. My grandmother always had a bowl of ice cream every night before bed. After my grandfather died, I daresay my grandmother went on an ice cream diet – I think she only ate ice cream for a few months before she settled into her nightly ice cream routine.

As a devout chocoholic myself, I was more than happy to indulge whenever in my grandmother’s presence. My father was a big fan of buying Breyer’s ice cream flavors for his ice cream habit (he usually preferred to buy the vanilla fudge swirl, but occasionally he bought the neapolitan, too). Since my grandmother only ate chocolate ice cream, I think he bought a whole thing of chocolate one time when she was in town visiting. It has this beautiful rich flavor…clean, heavy chocolate, soft, with a touch of graininess that adds a beautiful textured sensation in the mouth. In an instant, we were all in love.

My grandmother continued to buy Breyer’s Chocolate Ice Cream when she returned home – every time I visited for years to come, I could always count on a half gallon of Breyer’s Chocolate Ice Cream in the freezer. And my mother and I continued to feed our Breyer’s Chocolate Ice Cream obsession, too. It became this joke…we’d look at each other and whisper “Breyer’s Chocolate Ice Cream” and laugh. My father would pop into the room and tell us he was running to the store and ask if we needed anything, and we’d whisper “Breyer’s Chocolate Ice Cream.”

In recent years, my mother and I have been very good at controlling our ice cream indulgences. I honestly cannot remember the last time I bought or ate Breyer’s Chocolate Ice Cream. Ever since she started the gourmet food plan at Hopkins, my mother has renewed her ice cream habit. She has been eating chocolate ice cream daily (well, sometimes twice daily) for about a month now. When we arrived at Levindale, we discovered they keep little ice cream cups in the freezer for the residents, so my mother has been able to continue her ice cream habit. The ice cream is good, but it is no Breyer’s Chocolate Ice Cream.

Today, Levindale was out of the chocolate ice cream cups, and my mother was stuck eating plain vanilla ice cream (we didn’t even have chocolate sauce to try to fix it up!). Every time I go to the freezer, I see a half gallon of Breyer’s Vanilla Ice Cream that one of the residents keeps their for personal use, and it always brings back memories about the beautiful Breyer’s Chocolate Ice Cream. So tonight, I’m thinking about Breyer’s Chocolate Ice Cream, and trying to convince Elliot that he should run out to the store at 2:00 am and buy it for me. That kind of a negotiation was FAR more effective when I was pregnant. I think it is time for me to finally give in and go buy that half gallon to keep up at Levindale for my mom…and me. I’ll have to pick it up tomorrow (or maybe I’ll run out to the store tonight), and when I bring it to her room, all I’ll have to do is whisper “Breyer’s Chocolate Ice Cream” and I know the big grin will spread across her face.

This morning started a bit early…Maya woke up at 7:15. I asked Elliot to quickly and quietly get the baby and hand her to me before she woke Micah, but in typical Elliot fashion, he sat there comatose for a few minutes as the baby’s cries grew louder. As I started to get out of bed and walk around to get her, he finally decided to move and get the baby. After handing her to me, he thudded loudly across the room, made a loud grunting noise while he stretched…and woke Micah up. Yes, at 7:15, Micah was busy yelling “Mommy! Daddy! Out. Out. Out.” I told Elliot that since he woke the beast, Micah was his responsibility for the morning.

Elliot tried to bring Micah into bed for us, but he was in no mood to keep quiet or still and let us all nap. Elliot eventually gave up and took Micah downstairs for breakfast while I stayed upstairs and nursed Maya. My mom called around 8:30 to tell me she was awake and sitting in her wheelchair while she ate breakfast, and she wanted to know our plans for the day. I told her that Dad would be coming up before lunch, and that we wouldn’t get there until 1:00 or so because Micah had swim class. She was in good spirits and said she looked forward to seeing us.

Maya and I eventually came downstairs around 9, and I spent the next hour getting everything organized for the day. I packed the things I needed for the hospital, I got the kids’ outfits for the day together, and I packed up the swim bag for Micah’s swim class. At 10:45, Micah and I left for class.

Micah is starting to do really well in swim class! He is not afraid of the water – he loves to splash and play, he regularly puts his face under water, and he knows how to blow bubbles and kick. He still gets a bit nervous when I have him floating on his back, but we do seem to be making progress. Today he demonstrated that he can climb out of the pool all by himself! He also worked on floating and doing arm strokes, too. He was responding faster to all the prompts, and he loved the songs we sang in class, especially “Wheels on the Bus.” He was actually so brave this time that he did some walking around the pool on his own. I do think he is learning a lot of great pre-swimming skills, and I think he’ll pick up swimming quickly over the next year.

After class, I got Micah showered and dressed, and we headed home to get Elliot and Maya. Elliot made Micah lunch to eat in the car (what a mess that was!) and the four of us headed up to Levindale. When we arrived, my parents were sitting by the front desk on Mom’s floor. For the first half hour or so, Mom was great – she seemed alert and in good spirits. Her room was very hot – Levindale apparently shut off the air conditioning last week when it was cold…and now everyone is roasting in the latest heat wave. Luckily, my mother’s roommate had her husband bring in a fan for the two of them, so that is helping. On top of that, Mom’s bed is broken…the stupid thing keeps beeping, and no one can seem to figure it out. We put in the request to have it fixed on Thursday shortly after she got it, and all day Friday they told us they were working on fixing the problem. The noise continued all day yesterday and today, and no one can figure out how to turn it off.

After half an hour, my mom suddenly wanted to go back to her sweltering hot room and get in bed. I wish she would have stayed up longer. I know she feels compelled to go back to bed, and she says she doesn’t have the strength to stay up, but she stays in her chair for 4-5 hours a day during the week, so I know she is capable of being up longer than an hour. I think that the minute she is in Levindale, she feels this compulsion to crawl in bed, and it becomes impossible to keep her out of bed. I told her that it was a beautiful day outside, and suggested we take her out to a courtyard to get some fresh air. She declined and said she wanted to go back to bed. I pointed out to her that if she went back to bed, she wouldn’t be able to spend any more time with Micah, and that her room was too hot and too crowded today for me to go in there. She didn’t seem to care…and she went back to bed instead of spending time with us.

Over the past three weekends, I have been unable to keep my mom out of bed long enough to get any pictures or video of her with her grandchildren (other than Maya who can be plopped into bed with her). I told her today that I probably will not bring Micah back to Levindale again, unless she is able to start spending time in the wheelchair during the visits. It is just too hard to keep him controlled there, and if I have to sit with him in the hallway when my mother is in her room, well, it isn’t much of a visit. Micah gets very upset if I leave him in the waiting area, and then he starts yelling and upsetting the other residents.

It was actually a quiet day for my mother – no therapy and no visitors. While my mother was in her room, I went over to Sinai to visit my friend, Jen, and her new son, Zachary. He was adorable – tiny little thing. He slept soundly the whole time I was there. It was a nice (but quick) visit. They will be released from the hospital tomorrow, so I won’t be able to visit them again.

After my visit with Jen, I returned to Levindale to find Elliot out on the playground with the kids. Micah was very busily steering a truck, and we kept them outside for another half hour. Around 4:45, I decided it did not make sense to stay up there any longer if we were not visiting with my mother. We went back to the room to say goodbye. I helped my mom set up a few things before I left, and I was able to stay there while she ate dinner. Micah was busy running up and down the hallway yelling, and I felt terrible that he was causing such a ruckus.

While we were there, we received a phone call from the rental agent for one of the houses we are considering. I *think* it may be ours, but we are meeting with her tomorrow to sort it all out. The house is really lovely – it is a 6 bedroom in Potomac. There are 4 bedrooms, 2 bathrooms, a kitchen, a dining room and a living room on the entry level. Downstairs, there are two more bedrooms, another bathroom, and a huge family room and rec room (with a walk-out to the backyard). The backyard has a lovely stone patio. I think the layout of the house is perfect for us, and the extra rooms and finished basement will be good for us. My father and I are meeting there tomorrow morning to finalize things.

We finally left around 6 (my father stayed behind hoping they would come to fix the bed). Micah was funny on the ride home – he sang with us. This is a new trick for him…he is only recently starting to say the words with us while we sing. He sang some of the ABCs, “Wheels on the Bus” and a few Kidville songs. His favorite song, by far, is still the Hebrew song “Mayim, Mayim” – he LOVES the “hey, hey, hey, hey!” part, and he shouts it out and pumps his arms in the air while he sings. We made it home on the late side, and quickly fed Micah dinner. By 8:40, both kids were asleep! Maya woke up briefly again at 9:15, but she was back out a few minutes later.

My mom called a few times this evening, first at 10 to tell me she was waiting for breakfast. Since they started giving her steroids at 10, she has been getting confused. She falls asleep earlier for a few hours, they wake her up to give her the pills, and she thinks it must be morning. She told me she was waiting for her breakfast again, and I reminded her that it was 10:00 pm. She said she remembered, wished me a good night, and told me she was going to try and go back to sleep. At midnight, Mom called again – she was in pain again. I feel awful for her – I’m so frustrated that the therapy department has put her on these new no-lift restrictions because it is messing up her intestines again. We are going to have to figure out how to deal with this tomorrow. I hope she is able to get to sleep tonight.

Tomorrow, I’m going to try to figure out how to bring her some Breyer’s Chocolate Ice Cream – perhaps that will bring a smile to her face. I have to figure out the logistics of that, since I’m not going straight to Levindale. Maybe I can stop off at a grocery store on the way back to Levindale from Hopkins.

I sneeze in threes…almost always. Atchoo, Atchoo, (pause) Atchoo! Every time I sneeze, I count them…and I’m shocked any time I only sneeze twice. My children both sneeze in threes, too. The first time I noticed it for each of them, I laughed, because I find it interesting how some strange traits are just…hard wired. There are things we do from the moment that we are born that last our whole lives through. Micah and Paige both suck their thumbs the same exact way, and both of them pull on their ears when they are tired. My mom always says they will probably do that for their entire lives. Is that genetics at play, too?

In her later years, my grandmother used to confuse the remote and the telephone. My mother labeled the two for her to help out, but it rarely made any difference. Most nights, my grandmother would call up and say, “Debbie, the remote isn’t working again.” My mother would say, “Mom, you need to take the remote, point it at the tv, and press 2-4-enter.” My grandmother would respond and say, “Okay, hold on….” and suddenly we would hear beeping noises. My grandmother generally took the phone, pointed it at the tv, punched in the numbers, then returned the phone to her ear to tell my mother it had not worked. My mother would then explain “Mom, that was the telephone. You need to use the remote. It has a label on it that says remote. Never mind, I’m coming over.” To this day, every time Micah picks up the remote and holds it to his ear, or tries to turn on the television with the phone, I smile and think of my grandmother. Irony, or wiring?

I often wonder how much of personality and traits are hard-wired versus acquired through our environment. Maya and Micah are both genuinely happy children – both have been smiley from their early weeks. Micah’s stubborn streak appeared quite early in his babyhood, and every day it grows stronger and stronger (Elliot and I always joke that we cannot imagine how he could ever have a stubborn streak…since he could not possibly have gotten that from us). I wonder how much of what they are experiencing now is shaping who they will become as adults. Will all of Maya’s time spent in a hospital setting rub off in some manner and help determine who she is, or will all the times I leave Micah behind alter him in some way?

Since having children, I often feel like I’m becoming my mother. I catch myself doing and saying things I remember my mother saying and doing. Sometimes, I swear I hear my mother, and as I turn to search for her, I realize it is me talking, and that my mother is coming out of my mouth. I’ve noticed something similar happening with my mother…each day, I see my grammy more and more in my mother. It started slowly…a sentence here and there, a gesture of the hand, the way she reaches for something. Some days, I can hear it in her voice, or the way she takes a Kleenex and tucks it under the arm of her shirt. It makes me wonder – is this just our environment shaping us, or are we hard-wired to become our parents? As I grow older, will I eventually become my grandmother, too?

We had another early start to the day today – Micah woke up at 7:15 yelling “Mommy! Elmo, please! Abby? Animal!” I always laugh at his morning “shout outs.” Speaking of hard-wired, I think Micah must have been hard-wired to love Elmo. It is the obsession that never ends (although apparently, he has room in his obsession for Abby, now, too). Micah’s room is decorated in a jungle theme…his crib has elephants, lions, monkeys and giraffes all around the edges. I think he now wakes up and starts pointing to the first things he sees…animals. I often find him sitting and talking to his animals in the mornings, while hugging and kissing his blue dog blanket.

Since Maya was still asleep this morning, I brought Micah straight downstairs. Micah insisted on helping himself to breakfast (cereal) and a sippy cup. Micah then began to lobby for me to put Sesame Street on tv – he dug up the remote, handed it to me and said “Mommy, Elmo, please.” I told Micah we would watch Elmo later. Micah paused for a moment, then turned to me and said “Mommy, Abby, please.” I laughed, and told Micah to wait. He began to speak louder: “Elmo, Abby, please. Please. Please. Please. Please. Elmo. I need. I need Elmo. Please.” It was too much cuteness, so I did what every good mother does when she is exhausted, trying to keep a two year old quiet, and hoping for another hour before the second child joins the frackas…I put on Sesame Street and made Micah say “thank you.”

Elliot and Maya joined us about an hour later. We worked on getting Micah to eat more food, we finished watching Sesame Street together, and we played with some toys. By 11:00, we were all dressed and ready to go – Elliot left for services with Micah, and Maya and I left shortly thereafter to go up to Levindale.

I spent most of the car ride on the telephone – thankfully with a sleeping baby (for a change). My mom called me during the drive – she wanted to know whether she had to be transported to Hopkins today. I told my mother that today was Saturday, and she did not have to go to Hopkins today or tomorrow. For a moment, I flashed back to conversations I had with my grandmother…listening to her complain about how the phone doesn’t work well and trying to remember what day of the week it was and what the plans were for the day. My mother’s memory is actually very good, but she is quite confused about the day and time. Mom was thrilled – she is really starting to hate the daily transports during the week. She only has 12 sessions of radiation left – so 12 more transports.

I also told her that Jeremy, Jen and the girls should be there any moment, that I was about 15-20 minutes behind them, and that my father was another 45 minutes to an hour behind me. I told her that she had other visitors coming up in the afternoon, and she said she was looking forward to seeing everyone.

During the ride, my father and I also had a…discussion. Well, as much as I can ever have a discussion with my father. I have been extremely frustrated with him lately, and I told him that I need him to talk to me and help me with the planning for our living situation in the next few weeks. I think this is just one of those things my father is having a hard time processing. He doesn’t want to think about living anywhere else other than the home he has lived in for the last 39 years. He is comfortable there – his stuff is there. And he and my mother have lived there together for almost all of their married lives. They raised my brother and me in that house. I think we all hate the idea that we have to change the status quo. This is going to be a drastic change for all of us, and I think we are all worried about how it is going to work. It is going to be hard for us all to live in a house together and to get along and not step on each others’ toes. I’m worried about having to become the housekeeper that picks up after everyone all the time. My mother is worried about whether we can take care of her and if it will be too hard on us.

All I know is that the only way for us to bring my mother home is for all of us to do it together, along with some hired caretakers. I am certain that my mother will be less lonely if she can be around all of us during the days and in the evenings. I’m certain that we will all feel better about coming and going and resuming our normal schedule when there are more of us around to make her feel safe. And I’m certain that the only way I can spend the maximum amount of time with both my mother and my children is if we are all in one place. I just know that for whatever time my mother has left, we can make it better by being together.

When I arrived at Levindale, my brother, Jen and the girls were already there. We all sat around talking, and I had a chance to spend some time with the girls. Since Peyton always likes to wake Maya up, I told her that the baby was sleeping, asked her not to touch the baby, and parked the stroller in the hallway. Five minutes later, the baby was crying, Paige was yelling “Peyton woke Maya” and Peyton was grinning from ear to ear as she told me “I poked Maya and she woked up. Can I hold her now?” Peyton is lucky she is cute! Jen did me a huge favor and held Maya for a bit. Then, my mother needed the nurse, so Jen, Jeremy and the girls said goodbye and we all stepped out to watch the fish in the aquarium in the dining area.

While we were there, Robin and Elaine showed up for their visit. Sorry, Robin – I think this blog post is another long one, so you are going to be sitting here for a while reading! Jeremy and Jen stayed for a few minutes longer to chat, then they left for a birthday party. Peyton was shrieking and crying as they left…much to our amusement. The drama of being 3!! My brother told her to stop doing something, which started the big rolling crocodile tears.

Robin, Elaine, Maya and I then went down to visit my mother. She seemed to be in good spirits today. Unfortunately, the room was extremely hot – I guess Levindale shut off the air conditioning this week (because of the cold weather) and now that the warm weather returned, we were roasting! Robin and Elaine brought my mother some muffins (she had one for her afternoon snack), and we all chatted for a while.

My mother was supposed to go to physical therapy around 2:00, but they seemed to be running late. My mother was getting nervous about not being ready in time, so she asked for the nurse again to get her ready for PT, and she said goodbye to Elaine and Robin. As they were leaving, my father arrived, and we all chatted in the hallway for a bit. My father and I returned to my mother’s room and we talked for a bit. My father told me that my mother did not want to live in a house with all of us together, so I thought I should get to the bottom of the situation with all of us together in one room, hearing the same things at the same time. I asked my mom if that is how she felt, and she immediately told us she never said that. She said she is worried about how we will manage it together, and she is concerned that she will be a burden on us, but she said she would like for all of us to live together.

PT showed up several hours late…right at 4:00 as Suzette and Joel, Diane and Joey, Elliot and Micah and MB4 (Matt, Marisa, Morgan and Madison) all arrived. Elliot had taken Micah to an air show before coming up, and apparently, Micah had a great time climbing on planes. I love how the therapist seemed annoyed that we were interfering with her PT time when everyone stopped to say hello…instead of realizing that we had scheduled visitors to arrive during a non-PT time and she was the one running late! My mom did well in PT again – she is working as hard as she can, and it does seem like she is making progress. Unfortunately, the head therapist has put lift restrictions on my mom and will not change them until she believes my mother can do more independently. It is frustrating, because the therapists orders are interfering with the doctor’s orders. I would think the doctor’s orders should trump, right?

During the afternoon, my mother was complaining of a headache again. I knew immediately that they must not have given her the steroids at the correct time. I checked with her nurse, and once again, someone had crossed out the recommended times and was putting 13 hours between her nighttime steroid and her morning steroid. The pill is to be given three times a day – which should imply every 8 hours, right? They just cannot get the hang of that. It is one thing to stretch her to 10 or even 11 hours at night, but we’ve already told them that 13 hours is way too long. I get so annoyed that these mistakes keep happening.

We had a nice visit with everyone, but I do wish they could have spent more time with my mother. We spent a large part of the time waiting for my mother in the patient dining room. Marisa and I created our own little nursing corner as we fed our babies and chatted about pumping. It was great to spend a little time with Marisa (and Matt, too), and really get a chance to spend a little time Morgan and see how much Madison is growing up. Micah discovered a computer and a printer while we were lounging, and he was having fun banging on the keyboard. He also discovered the “print demo page” button on the printer, and must have printed out about a hundred pages before Elliot took the DVD player out of the car and distracted him with Elmo. Micah was not in such a nice mood – he shoved Morgan (only 6 months old!) a few times. I think the first time she thought Micah was flirting because she smiled at him, and the second time she cried. For good measure, Micah shoved Madison a few times, too, and we had to force him to allow Madison to watch Elmo with him. Please tell me the shoving phase will pass and I’ll be able to trust him again?

MB4 decided to go after an hour or so (over Madison’s objections…she wanted to stay around a bit longer). The rest of us stayed to visit with my mother a while longer. Once again, the kitchen sent up the wrong food for my mother. I do not understand how they manage to get the food wrong for EVERY meal. It is like they don’t even try. They’ve been getting the food wrong for my mother’s roommate, too. We actually checked it initially to see if perhaps they were just switching their platters, but it appears they are just dropping random things on each of the food plates. Luckily, my mother’s company had stopped to get her a corned beef sandwich, and she ate that instead, along with a piece of birthday cake from the party Suzette and Diane had attended just before their visit.

Around 6:00, we all started to leave. My father decided to go out to dinner with Suzette, Joel, Diane and Joey, but first they made a detour to visit Sharon and Eddie. Eddie has also been going through chemotherapy and radiation (I believe he started just a few days after my mother’s brain surgery – I last saw him the day before his first treatment), and just a few days ago, he completed his radiation course and rang the bell at St. Joseph’s hospital!! We are thrilled for him, and I hear he is doing well. I just want to thank Sharon (and Elise) for how much time they’ve spent helping us and visiting Mom when they have been going through so much with their own family at the same time.

Since Elliot and I drove in separate cars, I decided to take the opportunity to send both children home with Elliot…and enjoy a ride home without a screaming baby. What a wonderful change that was! I made a few phone calls (Arleen’s mother, Della, is not feeling well again, and I wanted to call and get an update). We were thinking of Della all day today, and we hope she feels better soon.

We made it home by 7:30, and we ate some dinner. We spent a bit of time playing with the kids before putting them to bed. Elliot and I relaxed in front of the television for the evening, finally catching up a bit on the DVR. Overall, it was another good day. My mother called around 10:45 pm…to tell me good morning. She told me she just took her pills and was waiting for breakfast. I told her that it was 10:45 at night, so she probably just took her last nighttime pill (I’m guessing they actually gave her the steroid at the correct time tonight) and it was time to go to bed. She said okay and then told me she was confused about the time because it felt like morning. I told her that we had spoken only 3 hours before, so she probably just took a nap and was woken up for her bedtime medications. I told her that it probably felt like she had slept a lot longer than 3 hours. She again repeated she was dressed and waiting for her breakfast, and I told her she would have a long wait. She laughed about her confusion, told me she was never going to get it right, and then told me she could wait for breakfast if she wanted. I told her to go right ahead, but she still had another 9 hours to go. Something in our exchange had me smiling as I recalled similar exchanges with my grandmother. It was kind of bittersweet…it was my mother, and definitely her sense of humor, but for just a moment, I could touch on a different moment in time with my grandmother. I wonder if one day, I’ll be having a similar conversation with Maya and suddenly feel like I’m touching on the same moment…but this time with the roles reversed. I guess I’ll never know if it is in the wiring.

My mother has no PT scheduled for tomorrow (of course, every time we announce that, they schedule something). So, she is open to visitors any time, and would definitely welcome the company tomorrow. I think we are going to try and get her up into the wheelchair around lunchtime and keep her up all afternoon. We’ll see how that works out. To my knowledge, we only have 1 visitor planning to come in the afternoon, so if you are wondering, tomorrow would probably be a good day to visit. My mother’s mornings are often the quietest – I will not be able to get up there until at least 1:00 tomorrow because Micah has swim class, and I don’t think Jeremy will be able to make it over. I think my father is planning to get there by lunch time, but I’m not certain.

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!