Today, Micah turned 22 months old! I wish that I could say I did something special for him… but I didn’t. Instead, we had a meeting at Levindale at 11:00 am. He woke up at 8:30 while I was nursing the baby, Elliot gave him breakfast while I showered and dressed, and then Megan took Micah to preschool today while Elliot, Maya and I drove to Levindale. The weather was terrible and the traffic was awful, so the trip was a long one.

This meeting was to address the concerns we have been having with my mother and her intestinal issues. I was angry, and told them that their policies have been causing harm, and that their calculations about patient safety were one thing, but when they caused physical harm, exceptions were warranted. My mother and father were also able to express their frustrations with the situation. After an hour-long heated discussion, I think (hopefully) that we worked out a resolution. They have a special lift sling that will be delivered tomorrow morning that will allow for my mother to be safely transferred to a commode. In the meantime, Levindale contracted for a sitter to be with Mom all night tonight and tomorrow until the sling arrives, and the sitter was given permission to transfer my mother to the commode at her request with the assistance of other staff members. I cannot believe it took them over a week to figure out this resolution. I’ll believe it when it is implemented!

Transport was running an hour late, so we did not even leave for Hopkins until 1:45. As we waited, my mother dictated another blog post, we read her my blog from yesterday and your messages. Luckily, when we arrived at Hopkins, radiation was relatively on time, and we were back out the door at 2:30. We had convinced transport to wait for my mother today, so she was able to immediately head back to Levindale. Elliot and I decided to leave for home. My father and mother went back to Levindale, and my mother had a lovely visit from her cousin, Michael. I’m so glad they had a chance to catch up!

On our way home, we stopped off to visit Della (our friend Arleen’s mother), who just settled in to rehab. I thought she looked wonderful, and it was great to see her! We brought greetings of love from my mother, and she sent back her warmest regards and love, too. But the best part…we introduced the two “Delicious” ladies. Stuart, Della’s grandson, loves to call Della Delicious, too, and as we all know, my mom calls Maya Delicious. So, today, Della Delicious met Maya Delicious. What could be better?

We made it home by 5:15. It was a quiet night – we just played, ate dinner, played some more, then bathed the children and put them to sleep. So far, all is quiet.

I keep thinking in my head, 22 months. How is it possible that Micah is 22 months old? My little baby is growing up! His language is truly starting to explode – he says the funniest things, and he is becoming a parrot. I told him he was a goofball the other day, and he looked back at me and said “Mommy goofball.” This morning, when he stepped outside, he said “raining.” We are currently struggling with getting him to eat well-balanced meals – I think he’d eat cheese, raisins and spoons of peanut butter if I let him decide. Micah is definitely starting to warm up to Maya – he kisses and hugs her, he brings her toys, and last night he tried to feed her with his sippy cup. We are trying to work on his behavioral issues…he is definitely a terrible two! He knows most of his letters and numbers, and he is starting to learn his colors, too. I worry about him – he is definitely feeling the strain of our situation, and I hope things get better once we bring my mom back home.

Tonight, I’m irritated as hell at Verizon. Yesterday, Elliot checked our bill, noticed that Verizon added a $10 per month charge for one of our previously “free” stations, so he decided to call up and cancel the channel. Tonight, my phone rang at 7:40, and all was well. At 10:30, I was surprised that I h ad not heard from my mother all night, so I picked up the phone to call my father…and realized our phone line is dead. We checked all the phones to see if there was a phone off the hook, but no such luck. Elliot called Verizon, and they are telling us that an order to cancel our phone line was placed yesterday! We are trying to get to the bottom of this, but in the meantime, we’re PISSED.

Tomorrow is my mother’s 65th birthday. We actually really don’t have any major plans for the day (other than PT, a trip to Hopkins for radiation, and dinner at the lovely Levindale). Perhaps we’ll see if my mother would like us to pick up something special for her to eat. And maybe we’ll light a candle in her nightly ice cream. I think just being together tomorrow will be nice. We’ll be celebrating in style on Saturday instead at a Chinese restaurant. It will be my mother’s first real trip out in 6 weeks, and I hope it is successful and fun for her!

Today I thought I’d talk about sponge baths. This morning, I was nice and toasty in my bed. The nurses came in to give me a sponge bath – it feels like they rip the covers off, get you wet, and then you sit there suddenly freezing cold. Nice that they wash you, but not pleasant to be so cold. I wish they could figure out a way to make it warmer.

Physical Therapy is hard work. I can definitely see I’m getting stronger. I hate the speech stuff – it makes me feel stupid. They ask me to do simple stuff and I can’t coordinate the tasks. They ask me to do things like connect dots in numerical order and name the object that the dots form – I miss some of the dots and then I can’t name the object because it looks wrong.

I like stretching with PT. It hurts, but it feels good. My muscles get tight and I’m stiff in the mornings. I try to do some exercises in bed whenever I can to build my strength.

In general, I feel ok, but I do not have much endurance or stamina. It is definitely an issue.

My appetite is incredible. I eat anything not nailed down. I’ll be the only person who gains 10 pounds in the hospital! I think this is due to the steroids.

That is all I have for today. I’ll try and think of more to say tomorrow.

Once again…a reminder that there is also another post from my mother below!

Family is a very strange thing. Growing up, I always thought my mother had such a huge family. She had tons of aunts and uncles and cousins – so many second and third and fourth cousins that sometimes she wasn’t even sure exactly HOW they were all related to her! Like every family, they had that one cousin that no one would claim – she was always described by everyone as YOUR cousin.

Over the years we went up to Scranton to visit my grandparents, I remember always being amazed by how we seemed to be related to everyone. I knew so many members of my mother’s family, even though I rarely saw most of them outside of special occasions, like birthdays, bar/bat mitzvahs, and funerals. My grandmother’s family seemed larger to me than my grandfather’s family. My grandmother had two distinct parts of her family – the Smith line (her father’s family) and the Kabatchnik line (her mother’s family). I only knew a small portion of my grandfather’s family, and all of them were Browns. Ironically, some of my strongest family memories relate to the Brown portion of my mother’s family.

What amazes me most, however, is how some family members are people you only see for snapshots in time…a family holiday once every few years, a birthday party, or a major life event. Nevertheless, these family members forever make an impression in our minds and hearts. Tonight, I was thinking and reminiscing about family with my cousin, Francine. Francine’s grandmother, Hilda, and my grandmother were sisters. Hilda and my grandmother were 15 years apart in age…which meant that my mother was approximately 15 years younger than Hilda’s children (Murray and Barbara), and I was a good 15 years younger than Murray and Barbara’s children. Francine is Murray’s daughter, and Francine, Murray and Gracy are perfect examples of how some family members can make a huge impression in just moments of time.

By the time I was born, Francine was already an adult. I really only saw her and her parents, Murray and Gracy, when they were visiting Hilda at times I happened to be visiting my grandmother. If I added up all the visits with them, it probably wasn’t a particularly large number. And yet, I have such strong and vivid memories of my times with them. Perhaps some of it was the fact that my mom adored her cousin Murray (and his wife Gracy), and somehow, that transferred to me, too. I loved Murray’s mustache – he had this huge, thick, handlebar mustache that looked like it belonged in another era.

I remember Francine as a younger adult, with very long hair that she wore hanging in two thick braids. Francine was always doing something fabulous…living overseas, working in refugee camps, traveling around Asia, studying peace in graduate school in Hawaii. I loved hearing updates about Francine and seeing photos from my Great Aunt Hilda whenever I came to visit. When my grandfather died, my grandmother took a cruise around Asia – and she met up with Francine, Murray and Gracy (in Bangkok, I believe). I loved hearing all of those stories and seeing the photos.

I remember being so thrilled when Francine “finally” decided to return to the states and “settle down” right here in DC. She was always such an exciting person to me and I loved the idea that we would get to know each other and become close. I was even more excited when I learned her father, Murray, would be moving to DC, too. For many years, we spent time together, but as my grandmother’s dementia set in and Murray’s MS worsened, we all just sort of drifted apart. I think when my grandmother’s dementia set in, my mom pulled away from a lot of the family – it was just too hard.

I find it interesting how family relationships change with time. Some family members float in and out of our lives. Sometimes, we hold everyone close, and at other times, we have a way of losing track of relatives. Over the years, my mother’s family has slowly passed away and drifted apart. Now, it is my father’s family that seems to be the predominant presence in our lives – many of whom I never met until I became an adult.

But, in times of great sadness, families sometimes have a way of rebuilding. At my mother’s request, I have been reaching out and finding some of her “long-lost” family members over the past month – an attempt to reconnect with them. Ironically, Francine and I found each other a few months back (before all of this happened) on Facebook…just before her father, Murray, died. I learned about Murray’s death through Facebook…and I was so sad that we did not have the opportunity to re-establish our relationship before he died. My mother, father, Elliot, Micah and I went to Murray’s “Jewish wake” – that was the first time we had seen Francine, her husband and her son in many years.

Since my mom got sick, Francine has been a huge presence in our lives – she has been supporting us with food delivery, messages of encouragement, and incredible tips and gems of advice from her own experience caring for her parents. I just wanted to tell Francine thank you, again, for all you have done.

The kids were up early today, and Elliot was out the door by 9:15 for a meeting. Megan helped me get the kids fed and dressed and took Micah to Kidville for his class, and I stayed behind to take care of a few odds and ends. Around 11:30, I left for Hopkins with Maya, but first I decided to detour through Columbia to meet my friend Niki for lunch on my way out to meet my parents. On my car ride up, I had a long chat with Joey (glad to hear he is doing better after his surgery).

I arrived at Niki’s office at 12:30 as she was finishing up with a patient. Niki and her brother, Sam, are dentists and own a wonderful dental practice in Columbia (if anyone local is in need of a good dentist, I highly recommend their practice!). They recently moved into a gorgeous new office, and it was my first time visiting the space. While Niki was finishing up with her patient, Sam and I had a chance to catch up and he gave me a tour of the office.

I had a great visit with Niki, and it was a nice break before I started the day. Maya and I made it to Hopkins a little after 2, and much to my surprise, my mother was already finished with radiation! The parking attendants were kind and let me double park my car in front while we sat and waited for the wheelchair transport with my mom. It was a long wait – a full hour! During that time, I read the blog to my mom, I lotioned her arm and her head, and we had a chance to just catch up a bit while my father wandered around with Maya.

Today was a good day for mom. When we returned to Levindale, she showed me her mail from the day – she had received several cards from rehab staff at Hopkins! She was so touched that they were thinking about her…there were notes from all of her nurses (including Philadelphia, Jeanette, Janell, Ed and Donna), and all of the PT and OT staff, too. My mom hasn’t forgotten any of you, and we think of all of you often, too. Ed, if you are reading this – we had QUITE a laugh over your note. Many of you may remember that my mom kept telling Ed that he was like the last guy in the circus parade, who got stuck walking behind the elephant and cleaning up shit. Well, Ed’s note said that the circus just isn’t the same without the elephant. So, Ed, know that the “elephant” misses you, too.

My father left on the early side so I could spend time with my mother. I also had another surprise for my mother – her talking watch arrived! I had set it up and I put it on her wrist and taught her how to use it. Hopefully, the watch will help her keep oriented on time and date. We also had gotten a crochet tool that should help my mother hold the yarn when she tries to crochet again. We are hoping it allows her to work on projects again, but we shall see.

Jeremy arrived a little after 4, and he stayed with us through dinner, focusing on mom while I nursed Maya. Once again, we all left around 6. On my way home, I got an update on Della (she is out of the hospital and in rehab). Mom called again at 9:00 tonight to tell me things were going well. I hope the rest of her night is just as good.

This evening, Francine brought over Murray’s wheelchair van for us to borrow to use with my mother. I cannot even begin to express what that means to us. It will give us a freedom that relying on wheelchair transports just cannot do. It made me realize the importance of family, yet again. Even when time passes, and even when we drift in and out of each other’s lives, family has a way of becoming a touchstone, a rock, in the presence of great adversity.

Tonight, Francine and I got to know each other, as adults who now have a common connection. We caught each other up a bit on our lives, but we mostly reminisced and focused on our memories. Francine told me that when she was a child, she used to think my mom was “cool.” I found that ironic, since I always thought of Francine as “cool” when I was a child, with her world-traveling. I told Francine some of my memories of her, Murray and Gracy, including the night that Murray stayed up all night with us after Jeremy’s bar mitzvah, telling us stories (while we plied him with whiskey).

I drove Francine home, and had a chance to go inside and spend some time with her husband, too. Francine shared with me a plaque that Hilda had gotten when she was a participant in the Pillsbury Bake-Off, and sitting in her living room was a piece of Hilda’s furniture that I remember from my childhood. It is sad that from such a large family, there are very few of us left. Most of all, I guess I am glad that Francine is back in our lives again, and I hope that this time, we manage to stay in each other’s lives.

Tomorrow, we have a meeting with the nurses at 11:00 am. We hope they will have worked out a solution to my mom’s lift issue and finally start to bring my mom some relief. I hope to do the “early shift” with my mom tomorrow – I’ll leave here around 9:30 or 10, and I hope to be heading back home by 3.

Many of you have noticed that we have not posted any new pictures recently. This blog only allows a maximum of 51 photos at a time, and we have now hit our limit. I’m working on the problem – there are so many more pictures (and videos) I’d like to post. I hope to work that out soon.

Just a few random things I’ve been thinking about that I thought I would share…just what pops into my head at night as I think.

For those who have never spent much time in Vegas or a hospital, time gets very confusing. I have my days, nights, times all mixed up. I’m just as likely to call at 5:30 am as 5:30 pm – to me it is all the same. I go to bed at 7:45 I wake up at 9:45 I think it is morning but it is all the same day…I think I’ve slept all night, but I’ve only slept 2 hours. Very hard to track.

I am beginning to feel like a Raggedy Ann or Raggedy Andy doll – everyone pulls here and pushes there and flops me around. While I know it is necessary, sometimes I want to say, “Don’t touch me anymore!” If they hurt me, they say sorry, and afterwards I always say ok, but it isn’t.

Oh patience. One thing all hospital patients should have is patience and it is the one thing they forgot to give me. Making you wait doesn’t make you more patient, it just makes you angry and frustrated. There should be an injection or pill for patience because everything in a hospital is wait wait wait.

Crap – I just hit post and the system glitched and lost my entire post. Crap!! I know that I started by reminding everyone to read my mother’s post – it is after this one.

One year ago, I learned that I was pregnant with Maya. It was actually on a Sunday, and my parents had Paige and Peyton for the day. I planned to take Micah and meet my parents and the girls at Butler’s Orchard for the day at the Pumpkin Festival. I wasn’t feeling great, and I wanted to take some medication, but decided to test first to make sure I wasn’t pregnant.

Elliot and I had just started trying for baby #2. We had a hard time getting pregnant with Micah, so we expected it would be a long road to get pregnant with Maya. In fact, our plans included undergoing fertility treatments around the time my mom ended up getting hospitalized and diagnosed with cancer. Anyway, that morning, I grabbed a pregnancy test that was in one of the drawers (at least a year old), took it, put it on the bathroom counter and walked away. When I returned to the bathroom, I barely glanced at it as I threw it in the trash, but something caught my eye, and I fished it back out again. I thought I saw a line, but just wasn’t sure. I asked Elliot, and he couldn’t decide if he saw anything either. I was certain it was a mistake, but asked him to pick up another test while I was out.

All day long, I was thinking “what if.” I carried Micah in the Ergo carrier, and we enjoyed ourselves. I remember Micah going crazy at the moon bounce – he was too young to go inside, but he was kicking like crazy as he saw his cousins jumping, and he wanted to hold on to the outside. My mom noticed that I was distracted, and I put her off by telling her I had a lot on my mind.

When I returned home that night, I took a second test. I sat there stunned as I looked at it. Elliot came into the bathroom, and asked me what it said. Without a word, I handed him the stick. He looked at me and asked, “I thought 2 lines meant pregnant?” I nodded, and Elliot still looked confused. “What does that mean?” “It means that at least for now, it appears I am pregnant.” We were stunned – we didn’t really know what to think. We were afraid to get too excited about things. We spent the next few weeks getting bloodwork and ultrasounds to confirm the viability of the pregnancy. Two days before Thanksgiving, we were actually told that I was miscarrying…it was not until December that we actually got word that everything was good with the pregnancy.

What a difference a year makes, huh? I’m now nursing that little miracle. Through all of this mess, I keep thinking that maybe Maya came so easily and quickly because she had to meet Mom. If Elliot and I hadn’t decided to start trying again early, there is no way we would be going through fertility treatments right now, or even the foreseeable future. So, for anyone who asks about how close in age our children are, she is our little perfectly timed miracle, and I’m thankful for her every second of the day, and I know my Mom says over and over again how Delicious is the best part of her day, and she is thankful for every minute she gets to spend with her.

I don’t have the bandwidth to retype our day, so here it is in a nutshell:

8:00 – Got Micah out of bed
8:30 – Got Elliot awake
8:45 – Nursed Maya
9:15 – Micah and Elliot went to preschool
9:15 – 11:00 – I cleaned for the cleaning lady, sorted through Maya’s clothing to put away all the newborn sized clothes, and pulled out clothing for Micah and Maya from the hand-me-down boxes
12:30 – Drove to Hopkins
1:40 – Mom and Dad arrived at Hopkins
2:00 – radiation finished (on time for once), but transport was very late.
3:15 – transport arrived and we left for Levindale
3:15-3:30 – I worked out details for mom’s birthday party on Saturday with her friend Diane
3:30 – talked with nurse coordinator about the commode issue
3:30 – 5:00 – read mom emails, responded to notes, helped her set up for the night, helped her make phone calls
5:15 – helped mom with dinner
6:00 – left for home
7:00 – interviewed (and hired) caretaker with Dad
9:10 – Mom called (to say she made it through another night – they probably gave her the meds early, so I hope she doesn’t have another headache tomorrow)
5:30 – finishing blogging and pumping
6:00 – Maya woke up and I lost blog due to a computer glitch – retyping one handed while I nurse her

Going to snuggle with my little miracle right now.

Since I’ve been in the hospital, I feel a need to constantly grasp onto something…my iPod, the blanket, my phone. I’m not sure whether it is to feel I can control something in my life…I don’t know.

I also have been on steroids to contain brain swelling. It has been interesting as I get hallucinations. Usually, I just see my grandchildren peering around the corners at me and saying “hi, Grammy!” or small objects or bubbles floating by me. Nothing scary – no spiders on the wall or anything like that. Just stuff that makes me smile.

This week, I am trying to get some new activities. I’m going to attempt to listen to Tuesdays With Morrie on tape.

I am still contemplating lots of things…especially how to do this. How to die gracefully and bravely. I’ve been thinking about how to say goodbye to people I’ve known my whole life. We have so many years and shared experiences together. It occurred to me that you can’t say goodbye because they share all your memories and saying goodbye is like throwing out all your memories because you give it all to them. I’m not ready to do that. So I guess I’ll be saying see you on another plane or level. Not sure if I believe that but who knows what is possible.

I love you all and look forward to spending more time with you. I try to think of every day as a gift…but some days the gift seems like a pain in my ass (literally). And one day I’ll say see you in another place.

Just so no one misses it – please also read the next entry down (published last night) – it is a message to all of you from my mother. If you are having trouble finding it, click on the word Journal at the top, and it will take you to all the entries. Mom’s message will be the second one down.

I apologize – I’m very late today publishing a blog. Last night (Sunday night) was a rough night. My mom called every few hours (10, 12, and 2) because she was not having a good night. Micah woke up at 4:30 am (well, Elliot accidentally woke Micah up at 4:30) and never really went back to sleep. I sat in his room with him for a while, trying to sleep in the chair. He would lay down, then 5 minutes later he’d pop up, yell “Hi, mommy!” and I’d respond with “Hi, Micah. It is time to go to sleep, lay down.” He’d say “Night, Night, Mommy,” lay down, and then in 5 minutes the routine would start all over again.

Finally, around 5 I brought Micah into our room, hoping the quiet would coax him into sleep. He would cuddle a few minutes…and then start his “hi” routine again. At 5:30, I tried turning my back to him to sleep. I think I managed to doze off for a bit, because I remember dreaming. I dreamt that I was petting a huge bulldog, who then turned into a pitbull. The pitbull had me pinned down, and its mouth was toying with me, on the verge of mauling me. In my dream, I had my hands up, protecting my face from harm. I remember calling out, opening my eyes, and realizing that the pitbull mauling me was Micah. It was 6:00, and I finally turned to Elliot (who had somehow slept through all of this) and told him that since he woke the beast at 4:30, and I’d been dealing with him for 2 hours, Micah was now his problem.

Elliot took Micah out to play for a few minutes, and then decided to just put him in his crib around 7. He screamed for about 10 minutes, and then finally fell asleep. I was thrilled – I fell asleep, too, only to be woken 15 minutes later by Maya. She fell back asleep nursing, and Micah slept until about 9, but it was a very rough night for us.

Megan took Micah to Kidville in the morning, and I met my father at the house in Potomac. He liked it, too, and it looks like the house will be ours. Thankfully, that part of our search should be over! I went up to Hopkins around 12:30, and I kept running into traffic. I finally arrived, and somehow managed to beat my parents there. We sat waiting for radiation, and luckily they were only about 30 minutes behind. While we were waiting, my mom said she wanted to write a post, so I started to jot down her message.

As I was writing, much to our amazement, Donna (my mom’s nurse at Hopkins) walked in to say hello! It was WONDERFUL to see her. We had a chance to catch up, and my mom told her she wanted to bring her with us back to Levindale. Donna stayed with us during our wait, and then returned upstairs when my mom was called back to radiation. We hung around for a bit after radiation to meet with the doctor, and then we caught the transport back to Levindale.

On my way back to Levindale, I took a little detour to Whole Foods. I called my mom’s friend Diane along the way to check on her husband, Joey, who had knee surgery today. I hear he is doing well – sorry, Diane, that I never called back – things got busy, but I’ll call today.

I forgot how much I love Whole Foods – I could spend forever shopping for wonderful foods, and then I start to remember all kinds of delicious things I used to cook. I think when my mom comes home, I am going to try and cook more – regular meals will be good for all of us, and I always did like cooking for a bigger group. At Whole Foods, I bought my mom Breyer’s Chocolate Ice Cream, among other things. When I returned to Levindale, we had a lovely chocolate snack!

My father left early (he had a 5:45 doctor appointment to check out his eye) and Jeremy arrived. Jeremy, Mom and I all hung out for a while. We actually even played a hand of gin rummy (definitely harder for mom than she realized – we’ll have to work on that). Jeremy helped mom with dinner, too, and I put away her clean laundry and set her up for the night.

While we were there, the endocrinologist stopped by to check on mom. I really liked him – we had a good conversation about my mother’s sugars, he adjusted the orders again, and he said he was aware that the nurses were not administering my mother’s insulin appropriately. We had a discussion about the problem, and he explained that because nursing homes do not watch patients all that closely, they tend to keep patients’ sugars on the high side. He felt Mom’s sugars were still too high, but he wasn’t sure that the nurses would ever administer the full dosage he prescribed, but he was working on it. I actually really liked him, and we talked about diabetes management when Mom returns home. He has several good ideas, and we may be able to reduce Mom’s insulin when she leaves.

I again talked to the doctor and the nurse coordinator about the lift and transfer issue. I pointed out that the OT policy was interfering with the doctor’s orders for my mother’s intestines, and that it was causing harm. I told them that she was again up all night, that we were receiving phone calls, and that I wanted the problem fixed by morning, or every time I got a call, so would they. We’ll see if that works – they actually seemed concerned this time. If I have to start paging them all night long, I will.

I left for home around 6, and made it back in good time. I quickly nursed the baby, and left Elliot with both kids to meet my friends Laurie and Jeff for dinner. I learned along the way that my father ran into Laurie at the doctor’s office! Funny – timing is everything. Dinner was nice – we had a chance to catch up a bit, and then I ran home. Maya was half asleep, but I nursed her again and she fell asleep.

Which brings us to this morning. Quiet night, except the baby woke up at 2:30. Micah is currently awake in his crib, but I’m pretending I don’t hear him yet. Oh well, it begins again.

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.