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Maternity & Parenting Center

Bald and Beautiful

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Mom was brave and gorgeous today…as you can see from her photo, she decided to shave her head. What do you think? I LOVE it! I think she looks beautiful, and I’m so proud of her for doing this.


I’m going to do a very quick run down of our day again…kids awake at 8:30, babysitter here at 9, Micah cried most of the morning because he thought I was leaving. Megan took Micah on a walk while I left for Hopkins. On my way up, I spoke to Rayna…she had extended her stay until Monday. Hopkins was mostly on time, and transport agreed to wait for us. We were back at Levindale by 3…and Mom had her hair done!


She sat there calmly, getting her head shaved. After the shaving, she was able to have her scalp massaged and washed off – and she said it felt wonderful. She did a bit more PT after her hair do. I stayed around until 5:15, then stopped by Suburban Hospital to visit my friend Heather’s mom (who just had back surgery). We were all home by 7, and we spent the evening hanging out together.

I’ve got the hair cut on video – I’ll try to upload it to You Tube and post the link here.

All Kinds of Family

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Family. Today is a day that I am thinking about family. Family comes in all shapes and sizes…it is the family you are given, and the family you make. My mom and I were talking today about life…friendships, death, and other heavy topics. My mother has so many lifelong friends, and I really don’t have the number that she has. I have a few, but many of them are not still in my life on a daily basis. And then I think about her friends that she has known for the past 40 years…and I realized that maybe, just maybe, a few of my friends from the past 5-10 years will still be in my life 40 years from now, and I hope that I am lucky enough for that to happen. My mom said that when they first moved down here, none of her friends had family close by…so they made their own family. She is right – so many of my mom’s friends (and their children) feel more like family to me than friends. They are my “Aunts” and “Uncles” and their children are my “Cousins.”


Tomorrow, my mom is meeting with the Rabbi. She keeps thinking that he’ll tell her she is crazy when she starts talking about death and all the things she wants to bring with her. She then asked me if she should share her “tag line” with him (what she plans to say to me when she calls me from the grave on her cell phone). Mom then asked if I would share our conversations from her grave on the blog after she died. I then said to Mom that if she called me from the grave on her cell phone, and I wrote about it on the blog, there would be several hundred people calling the authorities to have me locked up in the crazy hospital!

We tried to talk more about my Mom calling from the grave. She said that in Tuesdays with Morrie, he said that when you die you are just gone, and that she believes that, too. But then she talked about becoming one with the universe, which seemed like a nicer thought to me. I asked her why she thought she would be calling me on a cell phone from the grave if she thought that when people die they are just gone. She thought about it for a minute, and didn’t have a response. I asked her if she thought Grammy was in her grave able to talk on the phone. My mother shook her head no, so I asked, “then why do you think you’ll be calling me from the grave when you go?” Her response? “Because I know how to work a cell phone and Grammy doesn’t.” Okay – point taken.

I think it upsets me that my mother is thinking about death as if we’ll bury her alive. That she is thinking she’ll be locked in a box under ground, wanting to talk to us and unable to reach us. She is thinking about how she will charge her phone, but she is certain that she’ll have good reception under ground on Verizon (it works on the metro, you know).

My mom and I also talked about love. I have a whole other post I’ve been playing with…but I’m going to save that for yet another day. Maybe tomorrow. Suffice it to say that my Mom told me she is very proud of both of us (me and Jeremy)…more proud than she ever would have believed possible. She talked about how thankful she was for our support, and then said that she doesn’t know how a person could go through all of this without a family. She said that a person would just get lost and die without family around – bad medications, missed treatments, etc. I think that she is correct. I would bet that the studies show that survival rates are proportional to family support. We’ve been told before that many people with transport issues simply just do not do treatment because it is too hard to do alone. How is it that in a world with such advanced technologies, we still cannot figure out how to make sure that sick people can take advantage of available treatments?

It must have been a long day today, because I can barely remember many of the details. To be truthful, I cannot remember which child woke up when this morning. I think I remember being awake on the early side, and I am certain I did my best to let Elliot sleep in a bit on his birthday. I hope that Elliot had a happy birthday…despite the fact that it was not a day all about him. He did not get a card or a gift from me today, and I am sorry that I just could not do more to make it more special for him…but I did let him sleep and tried not to give him a hard time about anything. I do remember Elliot bringing Maya downstairs to me and then going back upstairs to bed. I also remember Micah being a bit on the cranky side again today. He did eat all of his breakfast – eggs and an English muffin. I remember that because the sight of Micah eating these days is becoming a rarity!

Somewhere in the middle of all of this chaos, our new landlady showed up with the final contract and the keys. There are moments when my sarcasm seems to get the better of me…and dealing with my new landlady this morning was one of those times. She started to lecture me about taking care of the house (we have a contract, and we’re liable for damage, so what does she think, we are handing over all of this money so we can trash her house?)…I very nearly told her that I had no intention of taking care of the house, but would prefer to run through it with a sledgehammer and destroy it. She then told me we needed carpets in the house. I said we were moving all of our things, and that included carpets. She started to explain to me about how carpets work, described what she meant by carpets…at which point I cut her off, told her that I was well aware of carpets, she was standing on one, I pointed out the one in the kitchen, and I told her that when I said we had carpets and would be moving them, I meant we would be using carpets. She then tried to explain again WHY she wanted carpets, and I think I practically shoved her out the front door. I think this woman is going to be a thorn in our side.

Micah and Megan headed off to class around 9:45, and Elliot, Maya and I left for Levindale. Today was our care planning meeting at Levindale. The meeting started a little late, but it was a good meeting. We received a report from each of the departments…nutrition, nursing, rehab and social work. She has been standing for over 10 minutes with the knee support, she is doing quite well with assisting in transfers using her good side, and she is doing extremely well in speech therapy. Overall, my mother is doing quite well and making progress, and the rehab people are recommending that my mother stay until November 4 to continue working on her therapy. We are waiting for word from insurance, but we are hoping for the extra days to help my mother build her strength. We had the opportunity to voice a few complaints…about the medicines being administered poorly, etc. We also learned that my mother has been losing time at rehab because the nursing staff has consistently failed to get her ready and downstairs for therapy by 9:00 am. We were not happy to learn about this, but we have been told that it will not happen any more. Once we have a more precise discharge date, we will begin to work with OT and the social worker to obtain all of the equipment we will need for Mom when she gets home.

After our planning meeting, Mom ate lunch and got ready for transport. I had brought Mom and Krystal cupcakes, and a chocolate covered strawberry for Mom (by the way, I forgot to mention yesterday that I received a BEAUTIFUL surprise from Michelle Harris Herman and Dottie Harris…an entire box of chocolate covered strawberries! They have been incredible, and I believe I already mentioned my obsession with chocolate covered strawberries). While we waited for transport, Mom ate her cupcake and said it was a wonderful treat (she saved the strawberry for this afternoon)!

Transport was a bit late, per usual. On our way to Hopkins, I received a text from my friend Heather…her mom had back surgery today, and is doing well. Heather – we’re thinking about your Mom, too, and hope she feels better quickly! When we arrived at Hopkins, we learned that they had an emergency and were running about 15 minutes behind. As is par for the course, 15 minutes became 30 minutes became 1 hour. We had gotten transport to wait with us…and at the 30 minute mark, she left I immediately had my father call and schedule another transport back, because I knew that we’d never get back unless he called immediately. Naturally, 10 minutes after she left, we were ready for transport again. My mother was ready to go by 3:15, Elliot, Maya and I left at 3:30, and at 3:45 they were STILL waiting for transport. I kept calling every 2 minutes until transport finally arrived. I just do not understand their system!

We got home right around 4:30…and I was amazed that the house was cleaner. Megan had straightened up a bit…emptied the dishwasher, organized the toys, cleared off the dining room table. I just couldn’t thank her enough! I waited for Arleen and Rayna to come meet me. While I waited, I spent some good quality time with Micah. Micah has a new game he likes to play…he opens the front door and stands between the door and the screen. He says “bye-bye,” and then closes himself between the door and the screen. He opens the door again a few minutes later, pleased with himself, and then starts all over again. The game makes me nervous…I think about my mom warning us about doors and children’s fingers (she nearly lost her thumb and the tip is severely damaged to this day because she got it caught in a door when she was 3), I worry that he’ll accidentally lock himself in there, and I also worry that he’ll somehow suffocate in that space. But, try as I might, I cannot get Micah to give up his new game.

Rayna arrived a little while later, sans Arleen. Arleen needed to stay behind at the Hebrew Home to take care of some things for Della. Rayna and I headed off to the nail salon, and we had a nice chat. We talked about so many different things…her pregnancy, Mom, Della, the future, and we spent a good deal of time reminiscing about the past. After our nail appointment, Rayna and I went to get dinner for everyone, and brought it home. My father had arrived, and it was our plan to eat dinner together…but like all good plans, it was foiled. Arleen and Lorin were stuck waiting for an aide to show up at the Hebrew Home and never made it to dinner. We missed you!

Instead, we sat with far too much food (but had a lovely dinner). My father left after dinner, we lit a candle for Elliot’s birthday, and we had cupcakes. Rayna and I continued to sit and talk after dinner. We were so much a part of each other’s lives growing up…Rayna used to call our house EVERY morning at 6:30 am before school. She always came over and sat at our kitchen table while Jeremy and I ate breakfast and got ready for school. If I sat here and shared all of the stories we discussed, I think the blog would be a novel. We laughed about the times Rayna would try on every outfit in her closet…about 10 minutes after Arleen had just folded and put it all away. I remember sitting with my Mom as she comforted Arleen who was beside herself with Rayna’s closet-emptying addiction.


We laughed about the time Jeremy first noticed that Rayna had grown breasts (it was over breakfast one morning before school). We also laughed about Rayna’s baking adventures…I remember one time when Elizabeth (my best friend) was babysitting Rayna and Stu, and she called me crying about how Rayna did something awful in the oven and she was worried Arleen would fire her. I ran over to help out…and saw Rayna’s chocolate chip “cookie” that was shellacked to a cookie pan. I still have no idea what Rayna did, but I’m fairly certain the pan was history. I recalled my first “real” date (one that drove a car)…and I remember clearly that Arleen and Lorin showed up to see me off, too, and I was totally mortified that I had 4 parents there with the potential to embarrass me!

And we never reminisce without me reminding Rayna of the time she nearly attacked me with knives. Jeremy and Rayna were hanging out by themselves after school one day with their friend, Lauren Bishop. Rayna was always fearful of being alone, and she managed to convince Jeremy and Lauren that someone was breaking into the house. I was by myself at our house, and received a panic call from Rayna and Jeremy screaming about how someone was trying to break in and kill them. I rolled my eyes, grabbed the key to the Luchs’ house, and headed right over. I knocked, but they didn’t answer, so I put the key in the lock, opened the door…and from every direction, children with hands full of knives, scissors, and other sharp instruments jumped out at me screaming “YAH!” Yes, Jeremy, Rayna and Lauren went nuts and tried to kill me. To be honest, I cannot remember if Stu was there…it could be he was out with Arleen somewhere. I confiscated their sharp implements, calmed them down, and stayed with them until Arleen came home. I don’t think I told Arleen that they were playing with knives, though, because I knew Rayna would get into trouble. My favorite…Jeremy playing the tough guy after the fact as he told me how crazy Rayna was and he knew better. I remember thinking, “Yeah, that is why you only had 3 knives in your hand instead of Rayna’s 50 knives and 2 pair of scissors.”

We spent so many family holidays together that it is hard to think about my childhood and not think of the Luchs. We were in and out of each other’s houses daily, and sometimes it felt as if there was an open phone line between our two houses. Rayna and I always think of each other as sisters, not just friends…so it was wonderful to spend the afternoon today with my “sister.”

Elliot’s brothers and parents called today, too, to wish him a Happy Birthday. Micah talked a bit on the phone to his Grandma Roberta and Poppy Ira. We are working on getting him to talk on the phone with them. He did say “night, night” and kiss the phone. We need to get one of the family members to set up their web camera and get them set up with a Skype account – we should be video chatting with them more often.

I guess it is nights like tonight that I realize how lucky I am to have so much family…both my blood relatives, and the family we’ve chosen. Thank you, Rayna, for giving me a bit of a break today. Happy birthday, Elliot…we will definitely plan a night out in the near future to celebrate.

Uneventful

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Sorry I’m so late with the blog today! Yesterday was rather uneventful (in a good way). My mom had a new aide for the day (she was no Krystal, but all seemed to go well). Hopkins was on time with radiation, and transport back was on time, too. Mom has been feeling good, and we are planning for her return home. We read mom the blog and the messages (she says keep them coming…she looks forward to hearing from you each and every day, and misses when there aren’t too many too read).

We had preschool for Micah yesterday…he was so well behaved! I made it to Hopkins early, and Maya and I got our usual attention. On our way back from Hopkins, I detoured to the grocery store to take care of a minor “emergency”…we ran out of Breyer’s Chocolate Ice Cream! Mom was very itchy yesterday, so I spent some time greasing up her face and head.

I left early for the day and came home to bake cupcakes for Elliot…it is his birthday (today…the 20th). I am experimenting with a new recipe, so we’ll see how it all turns out. We hit another major milestone…Maya actually took a bottle! I think we may finally have gotten her over the hump and she seems to have figured out how to suck. It was such a relief. She only took 2 ounces, but I am declaring victory. I hope she will take a bottle again tomorrow!

It is 7:00 am…I’m getting the “yesterday” and “today” all mixed up in this journal! Today (meaning the 20th) should be interesting…we have a family meeting to discuss my mom’s rehab stay, and I have plans this afternoon with Arleen and Rayna. Lorin will join us for dinner, and we’ll all have dinner together.

On Time

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I just wanted to remind everyone that there are TWO new messages from Mom – the one immediately below this post, and one immediately before yesterday’s post (that will now be on page 2 of the journal). It is a thank you note to all of you, so she wanted to make sure everyone saw it.

Maya was up a bit early again this morning so I brought her into bed to nurse and sleep. Micah woke up at 8, but we left him in his crib until 8:30. We were downstairs with both of the kids by 8:45. Micah was being difficult this morning – he would not eat any breakfast before class at Kidville.

Mom called this morning to tell me that all was well…and Krystal was back again! I was glad to hear it – it is always easier to have a familiar face than try to work with someone new. While Micah and Megan were out at class, I finalized the lease for the house in Potomac!

Micah and Megan returned, and we spent some time together before lunch. Micah’s nose was running a bit this morning (I think from allergies). He was very cute – he now knows how to blow his nose! He is truly getting to be a big boy – last night, he walked up the stairs on his own – completely standing on just two legs, not crawling or using his hands. I was out the door at 12:30 to meet my parents at Hopkins.

For the first time in a very long time, things ran smoothly at Hopkins. Our nurse, Ron, was getting ready to go on a charity trip to Guatemala next week. Before he left, he gave my mother a worry doll to carry in her pocket, and a CD of piano music that her recorded. My mother was once again, touched by generosity. I uploaded the CD to her ipod tonight. My mom asked for a different cream for her head (due to the itching), which sparked an impromptu visit to the outpatient clinic so that we could meet with the radiation doctors. They gave us a prescription for a new cream, and now we are just waiting for Levindale to fill the prescription and bring it to us. We also requested written orders for Levindale regarding my mother’s last radiation and chemo treatments date.

Much to our amazement, transport was waiting for us as we were finishing up our meeting with the doctors. My mother left the appointment and went straight onto the wheelchair van – for once, we were back at Levindale right around 3! It was such a relief to have the day nice and short – we have had far too many long days.

When we returned, Krystal helped my mother back into bed while we turned in my mother’s written orders. We also learned (on the way home) that the weekly blood draws that were requested from the doctors at Hopkins had never been delivered. My father called the doctor, and we *think* they did the weekly blood draws but just failed to send them over to Hopkins – we think we can get this corrected in the morning.

I learned that my mom’s friend, Sharon, had been by to visit in the morning and had brought us mushroom barley soup and a chocolate babka! Even better…she framed a picture of our family that we took on Saturday at my mom’s birthday celebration. Thank you so much, Sharon – the soup was delicious, the chocolate babka was a treat, and the picture is beautiful! My mother has it on her nightstand, and simply adores it.

My father left a little while later, and I hung around for a bit to read mom the blog and take down her message for today. While we were there, Maya actually sucked her thumb!! I know that doesn’t sound like anything important, but with all of Maya’s sucking and swallowing problems, fingers in her mouth (even her own) usually make her gag and sometimes even throw up. She actually took her thumb and placed it in her mouth and sucked…normally. For several minutes. It is a huge milestone for us.

Jeremy, Paige and Peyton showed up for a visit around 5:00. It was great to see and spend a bit of time with them, and my mom was just thrilled they were there. They spoke, she got kisses from her girls, and it was a beautiful afternoon.

I left before Jeremy around 5:15. Krystal was still there, and she was heating up some leftover food for Mom for dinner. When I got to the car, I decided to see if Maya would take a pacifier to keep her calm…and much to my shock and amazement, she did! She sucked on that thing for a good 10 minutes, and cried when it fell out. Maya has never been able to take a pacifier, so I am thrilled we have finally made some progress!

I made it home in an hour, and we had a phone appointment with our architect to discuss the builder’s proposal. Things are slowly but surely moving ahead for us.

Despite everything, tonight was a rough night for both of the kids. Elliot put Micah to sleep at 8:30 and then went out to Target to pick up a few things we needed. Naturally, the minute he left, the children both melted down. Micah was shrieking and would not go to sleep once he heard the door open and close, and Maya would not let me put her down. I find it nearly impossible to deal with both of them melting down at the same time. I eventually brought Maya into Micah’s room, and rocked with her while talking to Micah.

All was well for my mom tonight – she called around 10 while I was still struggling with two awake and cranky children. She was thrilled to hear about Maya taking a paci, and she did her best to help comfort the kids (and me) over the phone. I said goodbye, and spent the next hour dealing with two competing cranky babies. Maya finally passed out – she would whimper every time I tried to put her in her crib, but she was quite content in the swing. Micah was awake, but finally let me go downstairs. Elliot got home a little after 11, and he took over with Micah. I think it was close to midnight before Micah finally fell asleep.

Thankfully, Maya has stayed asleep (Elliot was able to transfer her to her crib without incident). I hope both kids stay asleep for a few more hours!

I’ll meet my parents at Hopkins again tomorrow. We made an appointment to have my Mom’s head shaved on Thursday, and I uploaded an audiobook for mom onto her ipod, so hopefully she will be a little less bored. I may try working with her a bit on crocheting, and I’ll remind her that she has cards – perhaps someone can play cards with her in the evenings.

8 more days until the end of radiation.

Message from Debbie

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I only have 6 sessions left of radiation. All this week and 2 days next week. When treatment is over, there is a tradition at Hopkins to ring a fire bell. I’m looking forwardd to ringing my fire bell with the rest of them in celebration. It means I’ve completed a large milestone that I wasn’t sure I would get through unscathed, originally.

I also think I’ve reached the end of having nothing to do. Jess is bringing me books on tape – I need something to do. I’ve been doing word searches. I used to do them by the hundreds, but I find them difficult now because of my vision, and sometimes I feel very dumb. I guess I just need to get back on and try again.

Transport was on time today – whee!! It makes my day so much shorter and less aggravating. Things are okay here – they are late with my meds daily. Things are better now with the aides – Krystal is wonderful and I don’t have to worry.

I am having difficulty sleeping all of the sudden for some reason. I used to sleep immediately and for 12 hours a night, but falling asleep is hard now.

Mess

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I’m sure it is no surprise that I like order in my life. At the root of my need for order is control…once again, I’m sure no one will be surprised that I like to feel some sense of control over myself and my environment. Needless to say, my life is seriously lacking order right now. We are at the mercy of transport, and doctors, and radiation…we spent our lives waiting and wondering what will happen next. That is probably one of the hardest parts about all of this for me…I feel like my ability to control myself and my environment has been stripped away on so many levels, which makes the things I can control so much more important to me.


Normally, my house is the one thing I can control. When everything else in my life gets crazy, I put my house in order – it gives me a sense of calm and control so I can face the rest of the chaos. I like a neat and orderly house…not a perfect or spotless house, but just neat and orderly. I like when everything has a place, even disorganized junk. I prefer to restrict mess to one designated location, usually out of sight from company and easy to put away if the cleaning lady or visitors are coming. I like the kitchen cleaned every day and put back into place, and I like my living areas free from chaos.

Unfortunately, Elliot is kind of like Pigpen from Charlie Brown…a cloud of mess and chaos follows him everywhere he goes. I always joke that I can see his path through the house because of the trail he leaves behind. He works very hard to try and pick up the mess he creates and clean up after himself, but I would have to say that for every 10 things he cleans up, he messes up 12 (in fairness to Elliot, he has drastically improved over the past years…he used to mess up 12 things, then mess up 12 more, and not clean up any of it!). It is a losing battle for him, and it amazes me that he just cannot even see all the mess he creates, especially when I look around and it is as if big neon flashing lights point out all of the mess.

Normally, I just pick up after Elliot and return my living space to order. But lately, with all that has been happening, I just cannot stay on top of the mess that Elliot creates…not to mention the havoc Micah now wreaks on the house, and my own laziness about putting things away the past few months. We still have the house cleaned every week, but I am sitting here tonight, focusing on the mess around me. In our last renovation, we removed many of the walls on the first floor, so from the position in the dining room where I blog and pump, I can see the mess in every room of this floor all at once. The buffet in the kitchen is piled high with books that Micah has ripped that I need to repair, Maya’s birth announcements that I haven’t had time to address and send out, a stack of thank-you notes I’ve written for all the wonderful gifts for Maya’s baby naming that I still have not finished or sent out, my pile of work/office things that are without a home, the drawings for our home renovations, and then a pile of….cords, technology, papers and crap from Elliot that definitely does not belong on the buffet. The kitchen counters are covered with bottles and jars that do not fit in the cabinets (largely because there are now things that do not belong stuffed in the cabinets…like empty mason jars and baby food jars). We have the oatmeal container from Elliot’s breakfast sitting out (because he never remembers to put it away). There is a 10 foot pile of mail on the front table (we get WAY too much juink mail, Elliot and I are both terrible about sorting through it, and I do not even have an office or a cabinet yet to file away my things). Back before I was married, I would have just dropped most of it into the trash when the pile started to offend me and solve my problem, but Elliot…well, he does not like to just throw anything away without inspecting it himself. I have a feeling waking him up now to inspect everything would not be well-received.

I miss my days of an orderly house. I am certain that much of the mess we face has a lot to do with the fact that we’ve been living in a house that is way too small for us for several years now. We do not have a bedroom for Maya, I do not have an office, we have no storage space, so even if we wanted to put everything away, it simply does not fit in this house. It may also have a lot to do with the fact that a few months back, when I thought we were only weeks away from moving out for our renovations (and I was at the tail-end of my pregnancy), I gave up fighting the mess because I thought it would be easier to deal with when we moved.

I have to say, I’m looking forward to moving. I cannot wait to throw out some of the crap in the house. I cannot wait to have enough rooms for everyone in our family and some storage space. I cannot wait to have some order back in my living environment. Most of all, I cannot wait to have Mom back home with us so we can all attempt to take some control of what has happened to us. I am sure my mother is having a hard time with the lack of control in her life now, too, and I completely understand that.

Maya woke up on the early side this morning around 7…thanks, in part, to Elliot making a lot of noise snoring noises. I cannot wait until we can put Maya in her own bedroom! Micah slept until about 8:30…I tried to get Elliot awake to go get Micah before Micah’s yelling woke Maya again, but no such luck. We ended up bringing Micah into our room, and he cuddled with us for a while. We all moved downstairs for breakfast, and I ran around trying to get our clothing and things ready for the day.

Micah has been trying to dress himself more and more everyday. While I was organizing our swim bag, Micah decided to help get himself dressed – he pulled his swim diaper over one leg of his pajamas. Eventually, we decided to help Micah out and got him completely dressed for swim class. Today, we put him in an Elmo sweat outfit…I think he may never wear anything else again!

Once again, swim class was great. Micah is really making progress and loving the water. Now, if I could just convince him that he shouldn’t DRINK the pool water, we’d be in business.

After swim class, we drove up to Levindale. When we arrived, Suellen, Greg, Gail and Steven were visiting and my mom was finishing up physical therapy. When she returned, we all sat together for a while in the cafe area talking. Mom was doing great, and sporting her new purple beret that Rayna brought from Paris. My mom decided today that she wants to shave her head – her head is itching and she just wants all the hair gone. I think it is a great idea, so tomorrow we are going to try and make that happen. So, Dad, if you make an appointment for tomorrow, make sure it is when I’m there, too! I will definitely take photos and post them (and sorry…I did not yet find the time to get all the rest of the photos and videos online, but will try to make time tomorrow).


I think we finally have the lease all sorted out and in hand. The owner/agent of this property is kind of a pain in the ass…after dropping off the lease for us the other day, she now wanted to change the terms and the signatories. It took us a few hours to sort it all out, but I think we are all set to return the lease to her in the morning. I have a feeling she is going to be a thorn in our side this next year.


This afternoon, shortly after my mother returned to her room, the “customer service representative” from Levindale came to speak to us. We gave him some feedback about our experience there, but I think other than listening and nodding, he has no authority to do anything. Unfortunately for him, he made a huge error…he told my father that he works full-time at Nordstrom in Towson. Yes, that is right, Nordstrom. The two of them sat there discussing the men’s line and how my father’s clothing was purchased there. Even worse – he gave my father his business card. Poor guy…if he only knew what he was in for now!! My father will probably never leave him alone!

After Gail, Steven, Greg and Suellen left, we took turns visiting my mother. My father said his goodbyes, and Elliot took the kids outside for a bit. I sat with my mother (and Krystal) and read the blog and a few other messages to my mom. We tried to order some cortisone cream for my mother’s head…her skin is so itchy right now! By the way, Heather Adler: I finally read my mother your email from Friday night, and she was thrilled to hear from you. She thanks you for the birthday wishes, and sends you love, too.

Before we all left, Mom got her Delicious kisses and said goodbye to Micah. He was cute..he said “night night” to Mom, and he also crossed his arms over his chest (the sign for “love’) when she said “I love you” to him. We left mom in good hands with Krystal, and we told her that there was fruit and a sandwich in the fridge for mom (instead of Levindale dinner).

On the way home, Elliot and I decided to stop off at IHOP for dinner with the kids. Both were awake and cranky, it was almost 6 pm, and eating dinner out seemed easier than coming home and cooking. Maya was just happy to get out of the car and nurse. Micah actually ate fairly well – we ordered him a grilled cheese sandwich and a cup of fruit. He ate most of my eggs, one of Elliot’s pancakes, a few bites of the grilled cheese, and some of the fruit. Unfortunately, Micah spotted the ketchup during dinner, so we put some on his plate. He loves to dip things in ketchup. He dipped his grilled cheese, and then, much to my dismay, he decided to dip his apples into the ketchup! Yes, disgusting. But Micah seemed to love it.

We made it home around 7, and we spent the evening relaxing together again. My mom called around 8:15 (she had some questions about medications, she wanted a fan for the room, and we needed to sort out the aide issue for tomorrow). I gave her answers about medications, I told her I’d call Dad to see if he could figure out the fan issue and promised I’d bring one tomorrow if they did not find the fan tonight, and I contacted the manager for her floor to discuss the aide issue. Apparently, they say they have aides covering her indefinitely right now, but they will not be using the outside company (and Krystal) tomorrow. Instead, they apparently have some companions on-staff, and will be using one of them. We are waiting to see if Mom feels comfortable with the person they send (or if they decided to terminate the sitters after tomorrow) – if my mother doesn’t like the person they send or if they cancel the sitter, we’ll contact Krystal and re-hire her. We’ve already asked Krystal if she will work with us when Mom leaves Levindale – we are hoping she’ll be able to work 1-2 days a week and fill in whenever Betty is unavailable.

Micah went to bed around 8:30, and Maya fell asleep for the first time shortly after that. Maya woke up again a little after 9, but was back down again within 10 minutes. So far, both children have slept through the night. Okay, I’m off to try and clean the house a bit before everyone wakes up.

Message from Debbie

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Okay, folks. There is no way that I can mention or physically write thank yous to each of you for your prayers, well-wishes, calls, gifts and visits. I’m taking an enormous breach of Emily Post etiquette and posting on the blog instead. My parents would be horrified but it is just going to have to be this way under the circumstances.

To those of you who have sent prayers, cards, gifts and well-wishes, I can never thank you for the encouragement and the spiritual lift it has given me. Words cannot begin to describe how much it has meant to me. I couldn’t even begin. I have never been so moved in all my life as I have been the past few weeks. To say I’m a very lucky woman is a small drop in a large bucket, and I don’t know how I would have gotten along without any of you.

I cannot begin to enumerate each individual, but you know who you are. What’s more, I know who you are.

The birthday party was beyond all my expectations. The fact that Rayna came in from California was beyond belief…and to bring me my purple French beret! Now I can speak French: “French toast, French fries, Voilà, allez cuisine.”

The most touching things occur and I can’t even begin to tell you what they mean to me. Thank you thank you thank you.

I also wanted to thank my cousin Francine for the use of your wheelchair van. It made my day! It was a mark of generosity above and beyond, and it means so much to me.

I also wanted to thank those who made sure my family did not go to bed hungry with all of your food deliveries. How can I thank you for that?

And I’d also like to thank Elise – for your visits, your time, and all of your help, advice, and offers in the midst of all you do for your own family. I’ve enjoyed our time together, and I appreciate that you have taken time out of your day for me.

Birthday Party

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No message from mom today – she has been thinking of things to post, but was too exhausted to dictate anything tonight when we returned from our adventures. She promises another post tomorrow.


What a day! Today was wonderful – I cannot believe how everything just fell into place and worked out as we had hoped! I think we were all nervous and hoping that today went well.

The kids slept until 8:45 – it was so nice that they gave us the extra time to sleep this morning. My mom called around 8:30 to tell me that she was awake and all was well. She had not slept much last night – I think she was nervous about today. We told her that we would be up to get her around 11:00-11:30, and we would bring everything she needed.

Elliot and I scurried around the house trying to get ready. He got up and showered first, and then we took the kids downstairs for feeding and dressing. Elliot still had to finish setting up the van – we had to install the two car seats in the back row so that we could all go up together in the van. I had waited until the last minute, and naturally I had to ice the cupcakes this morning before we left. Luckily, I went simple, so it only took me 20 minutes.

We made great time getting up to Levindale, and we arrived right around 11:30. Elliot stayed down in the car with the kids while I went upstairs to get my mother. My mother was sleeping when I arrived, so I waited a bit for her to wake up. I brought her an outfit, so Krystal, her aide, helped her get dressed and use the commode. We gathered her medications for the afternoon, got mom situated in her wheelchair, and were ready to head downstairs by 12.




My mother kept asking if we were waiting for transport, and when I told her that we had Francine’s wheelchair van, she started to cheer! She was so excited to be in a “real” car again and not need to wait on transport. We found Micah playing in the front seat of the van and Elliot holding Maya. We opened the door, rolled mom right in, and locked the wheelchair down. We had invited Krystal to join us, too, so it was a bit of a tight fit for Elliot in the van. A few minutes later, and we were off to Joey Chui’s, a chinese restaurant in Lutherville (with both children screaming in the back). My mother was cute…she asked me if I had more Tylenol for her, and I got worried and asked why. She said that she was just anticipating the headache the kids’ screaming was going to give her!





We arrived exactly at 12:30, and my father, Jeremy, Paige and Peyton were outside to greet us. Things were a bit hectic as we unloaded (we had a lot of stuff and two crying babies), but we easily got mom out and headed inside. Krystal was a huge help to us – she helped us get everything inside and set up.

Everyone was already there! Diane and Joey, Sheila and Les, Suzette and Joel, Robin and Elaine, Roz, Sharon, Dad, Jeremy, Paige, Peyton, and our two “surprise” guests…Lorin and Rayna! Arleen had to go to a class for work today, so she was unable to join us, too. I think my mom was thrilled to see everyone, and she was definitely surprised that Rayna was in town. We had lots of cards for mom to open, a gift from her friends Bonnie and Pat, flowers from her friends Faye and Barry that we used as a centerpiece, a brand new purple beret from Rayna’s trip to Paris for Mom, and Jeremy and the girls brought Mom some desserts to keep at Levindale.











The food started to arrive quickly. We planned it that way because we were not sure how long my mother would want to stay out. She had quite an appetite! Our meal included egg rolls and spring rolls and vegetable dumplings for the appetizer, and then beef and broccoli, chicken with cashews, vegetable lo mein, szechuan string beans, and eggplant for the main course. Dessert, of course, were chocolate cupcakes! I sat across my mom and nursed the baby. My niece, Paige, spent most of the time taking pictures of everyone with my camera.

We had one “emergency” – I was so worried about packing everything for my mom that I overlooked an important point…we had no diapers for Micah! Naturally, he needed a diaper change from the moment we arrived at the restaurant. Normally, we keep spare diapers in our car…but we had the wheelchair van instead of our normal car. Thankfully, Sharon found an old diaper in her car…it was a size too small, but it did the trick. Thanks, Sharon!

All four of the kids were great. Paige and Peyton behaved nicely and were running around playing with everyone’s cameras. Here are some of Paige’s photos:






















Paige attached herself to Rayna for the day, and Peyton attached herself to Sheila. Micah was quite well behaved – he sat next to me eating or chased “P” around (mostly Paige, but he now calls both of the girls “P”). Maya nursed and slept most of the time, but then she hung out on Grampy’s lap for a while, and even sat up by herself in a chair for a bit. She has recently discovered her toes, and loves to chew on her feet whenever possible.

Micah is currently at an awkward stage size-wise right now. He is so skinny that the 18 month size is too big in the waist, but he is starting to outgrow that size height-wise. He walks around with his pants falling down all the time (which actually helps the length problem), but because he is constantly yanking up his pants, he is very aware of them. He has developed two new habits – yanking his pants up, and taking them off. We only had one incident of him removing his pants in public today, and I don’t think most of the guests noticed! We have to watch him carefully – you just never know when he’ll drop trou. (Hey, we have to watch one of my mom’s friends, too…we never know when he’ll drop trou, either!).

Everyone socialized and had a great time. Everyone was snapping photos and taking videos, and it was truly perfect. Mom did a great job – she was awake, interacting, definitely eating, and able to hang in there for 3 hours despite the fact that she had been awake all night.

















At 3:00, she suddenly got antsy and needed to leave. From the minute she said she wanted to leave until we got her out the door and in the car was about 10 minutes, but about 30 seconds after she told me she wanted to leave, she was telling me that I needed to hurry up. I think she forgets that moving 2 babies, an aide, and a person in a wheelchair takes some effort and coordination (not to mention saying goodbye to a room full of 17 Jewish people). The first thing we did was straighten her up and put her arm rest on the wheelchair so she could safely travel. While we were doing that, she was snapping at us about getting ready and going, and I pointed out that putting her armrest on was the first step to going. We definitely need to work on her patience!





Once we got Mom loaded in the car, the ride back was uneventful. We were back at Levindale by 3:30, and Krystal took Mom up to settle into bed while we followed behind. I read Mom the blog and your messages and took care of a few other odds and ends before heading home. We were back home tonight by 5:00 pm!



It was a quiet evening with the kids. We played, watched some tv, and generally relaxed. Micah has an ID tag of Elliot’s he likes to wear – he puts it on his head, and then he starts playing his “air guitar.” He puts one hand up to the side and takes his other hand and strokes up and down on his belly. He gets a huge grin if I say “air guitar” while he is playing. We’re working on making guitar noises next. He also started singing again tonight – I love hearing his little voice starting songs now.

Around 6, I put on an episode of Sesame Street for Micah. He was so excited that he grinned, clapped, and started dancing. After Sesame Street, Micah found a baby doll that our friends Amy and Sam had brought him a few weeks ago. He was holding it, kissing it, and taking care of it. He then took the diaper off, and next thing I saw, he had a pair of Maya’s socks and he was trying to put socks on the baby (my mother would be so proud!). I helped him with the socks (and shoes, too), and then Micah was finished with the doll. After he was done, I searched the room for the baby doll’s diaper. I searched and searched and could not find it. I looked in all the areas where Micah was playing, and then an idea popped into my head…I looked inside the diaper pail, and lo and behold…Micah had thrown the baby’s diaper in the diaper pail! We were hysterical. He already does a better job of cleaning than his father!

Maya happily played on the playmat for a bit, and then nursed and snuggled. Mom called at 8:30 pm to say she was still awake and had gotten her pills. I wished her a good night, and she had a chance to talk a bit with Micah before bed. Just before Elliot took Micah up to bed, I glanced over and noticed that he was sitting with his arm around Maya, she was sitting up, and they were both staring at the tv. I was amazed…she is starting to look less and less like a baby every day. I think in another blink, she is going to be off and moving on her own.

My mom called again at 5:00 am, shortly after I started blogging. She said she did not sleep much (of course, she had been in bed since 4:00 pm) and was getting ready for the day. I think she has not been sleeping as well since she got an aide, so we do need to think about how that is affecting her sleep.

It is days like today when I start to think…or hope…that it will all be okay again. My mother is looking so good that it is hard not to jump there. And then I remember. I want so badly to hold on to this time together. But every time we celebrate an event, I can’t help but wonder if it will be the last time we are all together to celebrate. I hope that I am wondering the same thing again next year on my mother’s birthday…and the year after that, too. I guess I’m still hoping for that miracle and trying to be thankful for the time we have left together. But if I could freeze time for a while, I think I would.

Happy 65th, Mom!

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Today was my mother’s 65th birthday!! Happy Birthday, Mom!! I love you more than I could possibly express, and I’m so sorry that you are going through all of this on your birthday.

It was a good day, despite a few inconveniences. After Elliot spent half the night on the phone with Verizon trying to get our phone fixed, he finally worked out a temporary fix so that if my mother called, I could answer the phone. I have to say, that was my greatest worry – my mother gets so upset when she cannot reach us, and I certainly did not want to cause her one moment of distress through Verizon’s idiocy.

My phone rang a little after 8 this morning, and it was my mom telling me that she had a good night. Ever since she started wearing her new talking watch, she has been much more oriented as to the day/time. I’m so glad that worked out!

The kids woke up shortly after Mom’s call, and the day began. It was our usual routine…breakfast for the kids, waiting for the babysitter (Christin today), etc. While Christin entertained Micah, I started to sort and fold laundry while Elliot fought with Verizon about fixing our phone line (in short, someone ordered that our line be switched from a regular landline to their FIOS service, which caused us to lose service). There is a huge mountain of clothing to sort and fold right now thanks to all the hand-me-downs we have for the kids. I still have to get to all of my clothing, too!

We received a flower delivery for mom from Faye and Barry – we’ll be surprising her with the flowers tomorrow at her birthday party (we’ll use them as the centerpiece at lunch). While I was folding laundry, I got another call from my mother – despite EVERYTHING, they were AGAIN refusing to let her use the commode. I was furious, and I called up the nurse coordinator for the floor and yelled. About 15 minutes later, my mother called back – she wanted me to know that she was sitting on the commode. I started to laugh – how many people are actually excited to receive a phone call from their mother about sitting on the commode? I’ll suffice it to say that Mom’s commode adventure was a success, and as a result, she was pain-free all day today.

Actually, they had Mom on the commode a second time after lunch, too. The first time, they just helped her stand and pivot to get to the commode, but the second time, they used a different type of a mechanical lift called the sit-stand lift. All I know is that last week, when all this began, they had proposed using the sit-stand lift for moving her, and OT determined it was not safe and forbid it. Today, that is the same lift they used…which just makes me angry that they *could* have fixed this issue a week ago!! I guess I will just be thankful we fixed it today.

Maya and I left to meet my parents at 12:30. Mom looked great today and was eager for me to read the blog and hear all of your messages (via email, Facebook and the blog). Today was a bit chaotic – we had three cell phones ringing off the hook with messages from Mom, and she spoke to as many people as she possibly could. All of her friends were calling, and she was so thrilled to be speaking to everyone. Gonzalo – I am not certain if my mom ever spoke to you directly today, but I played her your voicemail message and she had a huge smile on her face. Jo – she was thrilled to get your texts today, too, and hopes you are recovering well.

Radiation was relatively on time…but we again had to wait 2 hours for the return transport back to Levindale! The part that makes me angriest? Transport being late meant that Jeremy was unable to visit Mom today – sitting and waiting for transport ate up my brother’s planned visit time. I am so sick of how inconsiderate this transport company has been. We have a scheduled pick-up time, and there is just no reason they cannot arrive within 20 minutes of that time.

After 1 1/2 hours, I decided it was enough, and I started to call the transport company every few minutes. I spoke to a supervisor, and I told them that all of this was unacceptable. We will not be waiting for transport for hours anymore. We are supposed to have a standing arrangement, and for the last week or so, they have not been doing a good job of getting back on time to pick Mom up from Hopkins. I will have my father call the transport earlier, and we will make THEM sit and wait for US if necessary. If they fail to show up within 20 minutes, I will be on the phone making their lives miserable – I’ve decided to become that customer that they appease to avoid. Being nice and understanding isn’t working for us, so it is time for a new approach.

After transport arrived, we finally got back to Levindale a little after 5. We were sorry to hear that we missed a visit from Carrie (my sister-in-law’s sister-in-law). She works at Sinai and stopped by to drop off a balloon and a brownie for my mother. She was so touched, loved the brownie, and wishes she had a chance to see and thank you in person. We also learned that the Luchs had sent us another flower delivery, too. It took us about an hour to hunt the flowers down, but we did, and they were beautiful! They sit next to the plant Scott and Rochelle sent when we arrived at Levindale and the plant the Levine, Lichter and Breslow “kids” sent to my mom when she was at Hopkins.

When we got back to my mother’s room, her aide, Krystal, was there waiting. She was a wonderful help – she quickly got Mom back into bed, changed, and comfortable. She put away Mom’s clothes, and arranged everything. When Mom needed a drink, she went and got one for her. It was so nice for me – I just sat down and nursed the baby (well, I hunted down the flowers, too), but I was far less frazzled than normal.

My father left (and after a bit of head-butting, I finally convinced him to drive home via the back roads because a traffic accident had closed down the major highway route he usually takes), and I stayed behind for a while longer with Krystal. I showed her where the fresh fruit was located (and the ice cream). Krystal got Mom’s dinner tray and set it up for her (because we were so late coming back from Hopkins, we did not end up getting Mom any special dinner from a restaurant). I showed her how we cue Mom to find her food. Mom topped off her dinner with fresh honeydew and Breyer’s Chocolate Ice Cream. I should have lit a candle for Mom and sung happy birthday…but she attacks that ice cream far too quickly! I started to help Mom fill out her menus, but ended up leaving those for Krystal to finish with her.

After dinner, Mom started to work on some of her speech and vision therapy exercises – a word search! She was initially finding it frustrating because she could not find the words. She said she felt stupid, and I told her the problem was the vision, not her brain. I watched what she was doing, and I realized that she was only looking at the right 4 rows of the word search, and that is why she was having such a hard time. So, I slowed her down, and started her off by helping her find the left side of the puzzle. I found that I needed to verbally coax her to the end of every row, and realized that was not effective. So I then took her cell phone and placed it to the left of the word search, and told her to keep searching across each row until she saw her phone. That helped enormously, and my mother started to find her words! I then remembered a tip that Kat, the occupational therapist from Wilmer, had given us, and I dug out a blue highlighter from my purse. I drew a blue line down the left side of the paper, and told my mom she needed to search across each row until she saw the blue line. That really made a huge difference! I think I need to start to carry a highlighter around all the time to help my mother with reading (and possibly some other device my mom can use with books, too). She is getting much better at scanning, and is learning how to better cope with the vision loss.

I ended up leaving while my mom was working on the word search. Krystal was helping her out, and she took care of setting my mother up for the night. It was kind of a relief for me not to worry about whether I forgot something.

Maya screamed the entire ride home tonight – I guess my timing was off, because lately she has been napping for about half of the trip. I arrived home around 7:20, and Micah and Elliot were still at services. I made a few phone calls and nursed Maya again. When they arrived home, I got a little quality time with Micah before we put him to bed. My mom called around 8:45 to tell me that they had given her the steroids. I was upset because it was the wrong time…but I did wonder if they had forgotten to give mom her afternoon dosage. I called my father and he checked with the nurse to figure out why they were giving her the meds at 8:30. They did forget to give her afternoon medications. I felt terrible that we did not remind the nurses, but again, THEIR system should be making sure this doesn’t happen! What about patients that do not have family members around?

Elliot baked cupcakes tonight for my mother’s birthday (I’ll be decorating them before we leave). We decided to go with cupcakes because they are easier to transport and eat and less likely to invoke a cutting fee from the restaurant. I had wanted to experiment with a new cupcake recipe, but we did not have time to get to the store to pick up some of the different ingredients, so we went with our old “standby” recipe. I also have been wanting to try out my Aunt Hilda’s icing, but I’m not sure I’ll be able to do that this time. I’m looking forward to tomorrow, and I hope we have a great party.

Oh, and Donna, if you are reading this, we hope that your daughter’s wedding is a beautiful, wonderful, and amazing event for your family, and we wish her years and years of happiness!

Message from Debbie

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I’m thrilled and touched by all the birthday calls and wishes I received today. So far, it has been a good day. Pain-free, no intestinal issues. I enjoyed lunch with my girls (Jen, Paige and Peyton) – they brought me a cupcake and it was delish! Mickey picked up a chicken salad sandwich from Panera (courtesy of Montgomery College Library) and a chocolate croissant. What more could I ask for (whispered “Breyers Chocolate Ice Cream“). I got bunny hugs and delicious kisses from Paige and Peyton and birthday wishes.


I am going out tomorrow for lunch. Looking forward to seeing everyone and I hope I have the strength and won’t disappoint anyone with my performance.

I am nervous about moving. I think that is not unusual. I’m nervous about establishing new routines, etc., but I’m also looking forward to it. I have a new aide staying with me at Levindale from 7-7, and I feel more secure about that. Hopefully, they are finally getting the commode issue straightened out. My day is much shorter and sweeter if it is pain-free, and that is best I can ask for. I will be satisfied with that for now.

I’ve been standing by myself in PT for over 7 minutes. I’d like to tackle stairs next.