Good health and a bad memory...

[caption id="attachment_1008" align="alignright" width="300" caption="Uncle Kippy once again captures an Ellie moment."][/caption]

 "Happiness is good health and a bad memory."  The perfect saying for Ellie.  She told us recently that she did not enjoy her Physical Therapy at school that day.  We asked what exactly had happened in PT (that's medical lingo for Physical Therapy for all you laymen out there.)  She could not recall.  Thom & I agreed that that is the perfect response to something that you do not like, just forget about it.

Ben & I were at Trader Joe's and this extremely friendly older man came up to say "hi" to Ben.  He was excited to see Ben and wanted to know what his name was.  He told me, "Wow, you

[caption id="attachment_1006" align="alignleft" width="300" caption="I doubt if this baby (not sure who he is) recalls the intensity of this hug, hopefully he just still feels the love. "][/caption]

really have quite a helper there!" To which I responded what a great helper Ben is, I am always working that "great helper" angle for all it is worth.  The next aisle, we ran into the same man and he asked once again, "What is this little guy's name?"  To which I responded again, "Ben".  And the man said something funny like, Ben without the Hen.  Well, when we got to the next aisle, the man asked once again what my son's name was.  And then like a lightening bolt, I finally understood that he was completely not recalling that he had just met us one aisle over.  So each time he asked, I responded as if it was the first time he asked because that is what I have appreciated people doing when Ellie repeats her stories or

[caption id="attachment_990" align="alignright" width="300" caption="Ben has always been enthusiastic in whatever he chooses to do."][/caption]

questions.  What struck me was how incredibly happy and practically downright jolly this man seemed.   He was having a good time not remembering, appreciating each time he met Ben, over and over again. 

Ben & I were at the library and Ben was quietly drumming on the shelf I was perusing.  Suddenly the patron who had been looking at books on the opposite side of the shelf leaned over and said sternly to Ben, "Stop that right now!"  I was shocked.  I mean if an adult were doing the same thing, would this patron have asked in

[caption id="attachment_986" align="alignleft" width="300" caption="Oh man is that ever sweet!"][/caption]

that way?  Why because Ben is smaller, less experienced should he be yelled at?  It irked me.  I wish I had said, "There is no need to speak to him in that tone."  Maybe I would have even said it in a British accent to make it sound classier.  Ben of course, as children do, was over it by the time he reached the train table.  I on the other hand spent part of my day pondering what I could/would/might have said...If I had said something British and snotty, I might then have obsessed and felt guilty that I had hurt someone else ...What I

[caption id="attachment_112" align="alignright" width="300" caption="Good time Ben, he does not stay mad for long..."][/caption]

 really want is to completely forget about that part of our trip and appreciate the wonderful time we had together and the super books and videos we checked out.  I want to know that this woman even in her manner of speaking to Ben was doing the best that she could at that moment.  She must have been startled to find a drummer in the library.  Perhaps she felt that the only way to be "heard" was to use such a voice and that seems a bit sad to me.  It never feels good to me to snap at someone else and to feel that this is the only way to obtain what you want would be sad indeed.  Ultimately, this woman did not hurt me in anyway, I was annoyed, it is true.  I felt protective of Ben.  Is Ben hurt? Not at all. 

Maybe I should be more like Ben & Ellie & the jolly man at the grocery store and just erase it from my memory.

(Yes, Cynthia, you guessed it, this was Sun Prairie Library.  I am ever so greatful to Sun Prairie Library for giving me so many topics to blog about. )

The gift

[caption id="attachment_1025" align="alignleft" width="300" caption="Ellie spreading her joy to newborn neighbor Max."][/caption]

Ben and I were at the library recently, there was a girl sitting with her backpack at a table.  She was mumbling to herself about how she wanted to eat pizza.  She reminded me of Ellie in some ways, I could tell she wasn't all here with us, part of her was elsewhere.  I thought of all of the people in our lives who have shown great kindness to Ellie, listening patiently, enjoying her words, giggling with her.  How much each of those people have enhanced our lives.  I decided I wanted to pay that kindness forward to this little girl.  As she looked up, a bit startled to see Ben & I racing through the library, I gave her a big heartfelt smile, like I really meant it.  The way she smiled back at me was so filled with love and innocence and wonder that I knew in that moment that I was not doing her any favors.  Even though I had meant to give her the gift, instead the gift was given to me.

Unexpected Twists (and a bonus! Fun Ways to Decorate your Head)

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On Thursday morning I was reminiscing about how last May, after Ellie's surgery, her body was having trouble regulating  temperature.  She would spike up to 107 degrees one night and then jump down to 94.   At one point, the PICU nurse after checking 3 thermometers to make sure she was getting an accurate reading, put an extremely loud electrical medical warming blanket on Ellie to try to elevate her temperature.  After an hour of warming, she checked her temperature, and it had not risen.  I suggested that I snuggle in bed with Ellie and try using my body heat.  I crawled into bed, avoiding all the tubes and lines running all over the bed into Ellie and laid down beside my sweet girl.   So greatful was I to snuggle up against Ellie to do

[caption id="attachment_357" align="alignright" width="300" caption="Ellie hats began at an early age.."][/caption]

something, anything that might be useful to her.  Fortunately, after an hour, Ellie's temperature did raise from the "body heat" method.  I was thinking about how this might be blog material, discussing how sometimes the simple way, the easy way is actually the most effective. 

With thoughts of the possible blog in the back of my mind, Ben &

[caption id="attachment_1011" align="alignleft" width="300" caption="Another Ellie hat moment. More like "Get this hat offa me!""][/caption]

I went to Ellie's music concert.  Ben was super excited about the concert and had been asking all day when we could go to the concert.  We had been listening to the music on CD and tape in an attempt to memorize the songs.  Ben had all the songs memorized, Ellie on the other hand, kept insisting that she did NOT want to sing on stage.  Growing tired of the conversation, I suggested that perhaps she should lip sinc.  Her teacher, Ms. Zwart, insisted Ellie sing with the class as she noticed that Ellie

[caption id="attachment_1019" align="alignright" width="300" caption="The 3 c's of successful hatwearing--cozy, cute, comfortable."][/caption]

has an excellent singing voice and loves music, continually

singing songs of her own making.  I envisioned Ben singing from the audience while Ellie did NOT sing from the stage.  Or maybe the audience would think that Ellie was somehow throwing her voice without moving her lips while Ben actually sang the songs.

When we arrived at school near concert time, unfortunately, Ellie saw us and thought it was time to go home.  She became highly upset  when she realized instead it was concert time.  Not a good start to the whole extravaganza.  Ms. Zwart came in like a

[caption id="attachment_1024" align="alignleft" width="300" caption="Another strawberry hat photo, because those cheeks are so cute."][/caption]

superhero and saved the day, taking Ellie by the hand and escorting her upstairs.  Ms. Zwart has a super power of being able to calm Ellie down in a moment's notice.   I keep expecting to spot her superhero cape underneath her teacher disguise. 

When the concert began, Ellie stood on the front row of the risers next to some of her classmates.  The program began with a

student reciting a poem.  The entire time he was reciting, Ellie

[caption id="attachment_1020" align="alignright" width="300" caption="She will wear the hairbow, but she will NOT enjoy it."][/caption]

was protesting loudly that she wanted to go home.  Then when the music started, Ellie began singing and dancing for everyone's entertainment.  I felt myself tearing up thinking how incredibly far she has come.  I wished terribly that the lights were off so I could have an "ugly cry", but alas the lights were on and bright, allowing everyone to see my emotional breakdown.   I had to pretend as if I had an allergic reaction to something and just discretely wipe my eyes.  Every time a song came on, Ellie would swing her arms, move her legs back and forth and occasionally clap her belly drum and her head.  When the rest of the class did clap, Ellie swung her arms back and forth to clap them in a much more theatrical way.  Several times, Ellie had a wedgie,

[caption id="attachment_1021" align="alignleft" width="300" caption="A happier hairbow moment."][/caption]

which she had no problem taking care of, regardless of the audience in front of her.  Between the songs, Ellie would become

upset, particularly with the clapping of the audience, she would hold her ears, protesting that it was too loud.  I sort of went back and forth, wanting to yell and cheer and clap for the 3rd and 4th graders and wanting to request that the audience use sign language clap, which would be silent, for Ellie's benefit.  Ms. Zwart stood off to the side and during the nonmusical parts of the concert, she would stand with Ellie until it was time to sing again.  

[caption id="attachment_1027" align="alignright" width="300" caption="Ellie all decked out for Easter Sunday."][/caption]

I always try to dress Ellie in a long shirt or dress because her pants tend to slowly ride down her body.  I recall a boy in my grade school whose pants were forever falling down, revealing the top part of his derriere, currently referred to as the "coinslot".   At one point in the concert, Ellie got an itch on her back.  As she tried to scratch

it, she began to lift up her dress and I said aloud, "Oh no!" because I knew the entire audience was going to be getting an eyefull.  Fortunately, it did not last long and I am going to assume that all the parents in the audience were so attentive to their own child that they did not notice Ellie's coinslot.  The boy

[caption id="attachment_1023" align="alignleft" width="300" caption="The same Pooh hat a month later..."][/caption]

standing next to Ellie continually encouraged her throughout the concert, telling her how many more songs they were going to sing.  When a child from another class stood up to sing a solo, Ellie kept singing, unabated as her classmates looked at her astonished that she would sing during someone else's solo.  Ellie, being Ellie, of course did not notice the looks of horror aimed in her direction, but just kept right on singing along.  The exact opposite of what I had envisioned beforehand--Ellie not singing at all. 

I think the thing that was most astounding to me was thinking that a year ago, Ellie lay in a hospital bed unable to regulate her

[caption id="attachment_1026" align="alignright" width="300" caption="The one and only time Ellie wore pigtails."][/caption]

body temperature.  After the concert, Ms. Zwart and I conferred on how we had both felt emotional seeing Ellie up there performing.  And I knew for sure that Ms. Zwart was in fact a superhero disguised as a teacher.  How else could you explain someone so invested in your child's life?  She really understood how momentous this was.  Today she stood on a stage in front of her entire school and flashed them (unintentionally of course).  If you would have told me a year ago this is where we would be, I never would have believed it.  Amazing!

My mom, Agogo

When my mom was in high school, she stood up in her Baptist Church in Slater, Missouri and proclaimed that she wanted to be a missionary.  Her mother convinced her that the missionary life was not in fact the life for her.  Well, my mom believed her until she was in her 50s and the church she was attending in Kansas City, Missouri was taking a trip to a small country in Africa called Malawi.  My mom insisted that she go. Eventually she ended up moving there to teach at a University, then went on to marry her husband, Moffat.  They built an orphanage and a church brick by brick.  I admire that my mom did not let her dream die, even though it took her several decades (and husbands) to attain that dream, she went for it when she had the chance.  She never thinks or acts as if she is "too old"  or "too late" to do something.  

In honor of Mother's Day and her birthday (May 14th), I would like to blog about what I love most about my mom (aka Agogo).  

1.  Laundry.

She loves to do laundry and whenever she comes to visit she takes over doing laundry and I am not even allowed into the laundry room.  It is AWESOME!!

[caption id="attachment_218" align="alignright" width="300" caption="Ellie & Agogo"][/caption]

2.  Ellie & my Mom.

I love to watch Ellie & my mom tit tatting (talk + chit-chatting).  My mom sincerely and thoroughly enjoys spending time with Ellie talking.  After one visit, I called my mom to tell her how much I appreciated her conversations with Ellie.  The thing that I found most fascinating was that even though Ellie often repeats her stories, my mom always came at the conversation as if it were brand new and fresh.  She was always engaged.  I was most impressed.  It is so challenging to maintain interest in a story that you have heard repeatedly and to ask different questions each time.  When I expressed my gratitude for her continued presence in Ellie's recycled stories, my mom, sounding quite surprised exclaimed, "She was repeating herself?"  Right then and there I knew that my mom & Ellie were a perfect match. 

[caption id="attachment_221" align="alignleft" width="300" caption="Baby Ben & Agogo"][/caption]

3.  She just rolls right into our lives.

When my mom comes to visit, she typically stays for several days to a week.  After one such visit, Thom & I mused that it was strange because it felt as if a member or our immediate family was gone.  My mom was with us the week before Ellie's last surgery and a week after her surgery.   Again, she just rolled right into our lives.  When I would arrive home, exhausted from the hospital, there would be my mom with a plate full of food and a clean kitchen.  All the laundry would be done and she would be ready for a talk or to watch a movie together.  It was magnificent not to have to even ask her to do anything, just to have it done. 

4.  Celebrates our similarities.

My mom is one of those amazing people that will seek out how she is similar to whomever she is speaking with and accentuate that.   She makes NBFs (New Best Friends) wherever she goes, partcularly on airplanes.   Even though we are not Christian, my mom often jokingly says that I am the best "Christian" that she knows.  She chooses to focus on what I do that adheres to the values she lives by rather than focusing on that I do not belong to a church. 

5.  Sense of Humor

My mom has a great sense of humor.  She loves to laugh and sometimes when I am in the heat of the moment, she is able to help me see where the fun lies. For example, when I was telling her of a recent escapade of Ben's she just started laughing because she could totally see how very similar Ben was to me when I was his age.  Payback time I suppose.

6.  Her choice of men

For the most part, my mom has married really really well.  The men she chose to be her husbands were also my father figures and each and everyone of them (well with one exception that we won't go into here and I was in college anyway so it doesn't count) added so much to our lives.  I think having such a a variety of men with such wonderful attributes enabled me to choose an amazing man like Thom as my partner.

5.  Connection

A dedication in a book I started to read said, "To my mom, my first real girlfriend."  That is exactly how I feel about my mom.  She is one of my best friends.  We can stay up until all hours talk talk talking (well, after awhile, she starts nodding off).   She is one of the people I want to call first when something significant happens.  (Although if she is on another continent, this is more challenging for me.  I have a highly difficult time pressing all of the numbers for the phone card and then her phone number, then if it doesn't go through, I get no credit for correctly pressing all those buttons. I think at some point in my life I will hire someone for the express purpose of dialing all those numbers.) 

6.  Debora Gamma

At some point, my mom let it slip that "Susan" (my older sister's name) was her favorite name.  The name she used on all her dolls when she was a girl.  When she realized the faux pas she had made by revealing this bit of information, she informed me that "Debi" was in fact my Dad's favorite name.   He even wanted to name his youngest sister, Linda, "Debi" when she was born, but alas his mother would not agree.  In
Malawi, when the family who works at the orphanage asked my mom for suggestions of what to name their daughter, she told them, Debora, after me.  Often times when she comes back from Malawi, she will bring Ellie pictures of my namesake.  It was her own little "do-over" moment...

7.  Absolutely perfect in every way.

Last month I attended my group coaching and left there feeling less than extraordinary when I compared myself with the other attendees. I felt down right ORDINARY, boring. Do you want to know what I did? I called my mom, the person who seems to  believe that I am extraordinary, “before my time” or “on the cutting edge” is how she likes to describe my family. Just a little boost of mom confidence and I was feeling better in no time. Better than chocolate. And even though she would never describe herself as the perfect mom, she was exactly what I needed.

 Happy birthday and mother's day, Mom!

Grumpy Moms, Friendly Moms

[caption id="attachment_748" align="alignleft" width="300" caption="A grumpy Ben--come back Ellie!!"][/caption]

So a couple of months ago, I was feeling grumpy and discontented.  It seemed as if winter would never end.  I was tired of the cold.  Tired of the gray.  Tired of me being tired of being tired.  Just tired.  Like I needed a long nap.  Not too surprisingly, I kept running into "grumpy" moms.  Moms who seemed to get so frustrated and angry with me and my parenting that it created a highly uncomfortable situation.  Moms who would yell at Ben when he was struggling through something.  I felt like the worst mom ever.  EVER.  The story I was telling myself was that I had no idea what I was doing and perhaps I should spare the rest of the world and just stay home.  I was so out of wack that even when I tried to share my experience with a good friend, she tried to get me to see how the other moms might have felt.  Leaving me feeling worse than when I had started the discussion.   

[caption id="attachment_702" align="alignright" width="300" caption="A happier photo shooting Ben."][/caption]

A few weeks later, I recovered from my grumpy mom fest and was at one of the same libraries where we had had our most recent display of craziness (yes, Cynthia, I am talking about Sun Prairie Library) .  It was starting to feel warm outside, the sun was shining.  I was feeling happy.  We were going on a trip to New York soon and my birthday was right around the corner.  Lots to be excited about.  When Ben was having challenges sharing the train cars, one of the moms told me that her son had gone

through the same exact stage and that he had grown out of it. 

How refreshing to be able to connect with another mom and feel like she was understanding what I was experiencing, rather than feeling as if I was in her judgement. 

When my sister came to visit, we were walking down the sidewalk pushing strollers.  The pedestrian coming the other way yelled out at us for using both sides of the sidewalk.  This had

[caption id="attachment_859" align="alignleft" width="300" caption="We are all amazed that Ellie is actually SMILING at the camera..."][/caption]

never ever happened in my definition, very friendly neighborhood.  But, I suspect, because my sister now resides in the south, she anticipates a certain amount of northern snobbery.  I was so surprised by the behavior of the other pedestrian.  Then, when my sister-in-law came to visit (another southerner) we almost got run down by a car as we crossed the street, which had never happened before or since.  Weird, huh?  (I will admit, perhaps I am stereotyping my southern relatives.) 

I think the main thing that I got from these experiences is that I only see around me the things I am in line with.  For example, when I am grumpy, all I see is grumpy.  When I am happy, excited, all I see is happy, excited.  That means I do not have to change the world, I only have to change my perspective to have a brighter day.

Salamanders

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Last Saturday, Ben and I went to the library for a Frog program.  Yes, live frogs at the library!  Who could ask for anything more?  Well, when arrived, the program had begun and Ben had trouble seeing the salamanders which were laid out on a water proof tablecloth. After a few minutes, the Frog instructor, we'll call him Mr. Frog, suggested that each child could hold a salamander for a few minutes with both hands and then pass it on to the next child.  Well, when the little girl sitting next to Ben had a turn, I asked Ben if he wanted to hold a salamander.  Surprisingly, he did NOT want to hold a salamander.  Even more surprisingly, I discovered, that I in fact, DID want to hold a salamander.  I mean I had always considered myself an anti-salamander/frog/toad holding type of person.  I thought to myself, today is the day to break through that particular definition of myself.  I wanted to be the type of person who jumped right in and held it.  It probably helped that we only had 5 seconds a piece to hold the little critter.  It felt rubbery, not slimy as I had expected.  And now I can cross holding a salamander off my list of things to accomplish...Thom thinks a toad should be next on my agenda.  I'll have to think about that.

(Photos taken by Ben, click to enlarge.)