That Growler Thing

Tonight when I went to check on Harry, he was already asleep, which is unusual for 8pm. He can rock out quietly in his room for a good hour plus after “going to bed.” All this outside time is good for him.

His bed was still a wreck, covered in books and toys, so I began gathering them up and putting them away. He awoke for a second, barely opening his eyes and said slurring and bleary, “Can you get me that growler thing from down there?” I had absolutely no idea what he meant, so instead I grabbed the closest blanket and put it on top of him, placing both of my hands flat on his chest and pressing him gently down into the mattress. He drifted back off to sleep instantly, taking a huge deep breath. As he exhaled, he said, barely audible, “Thank you.”


Everyday Heroes

Last night Ellen and I attended a community “Everyday Heroes” event where teachers, administrators, students, and community members were honored for the difference that they make in the lives of children with special needs.  I thought I would post about it here because I was so inspired by the event and it gave me so much hope for the future.

Ellen nominated her school nurse, Mrs. H. who does all sorts of kind things for her and the whole “club” of kids who have to visit her every day to get their various medications.  Among many kind things she does for Ellen, she had the kids from the “club” call Ellen during their medication time to see how she was doing after a recent MRI.  Ellen was still pretty woozy (she had just woken up from sedation), but it made her so happy to hear from her friends and to know that they were thinking of her.  Anyhow, Mrs. H. got an award and Ellen was so excited about it.  She kept it a secret from March until last night and she was so thrilled to see Mrs. H. there and for her to find out who nominated her.  Mrs. H. knew she was getting an award, but not who had nominated her–she was brought up on stage and the MC read Ellen’s nomination (below) and we all cried.

Ellen thought for a while when I asked her to choose someone special at school to nominate for the everyday hero award.  “Can it be Mrs. H.?” was the first thing she asked.  I told her yes, but asked her to think hard about all of the people at her school that help her before choosing for sure. She had many wonderful things to say about so many staff and faculty members at her school; she considered a dozen people but eventually came back to Mrs. H.  “Because she brings things in from home to decorate, and she always has games for me to play.”  

 Ellen sees Mrs. H every day when she is feeling well and many more times when she is struggling.  Beyond all of the amazing things that Mrs. H. does in school for Ellen, she touches our family outside of school too.   She sends home notes and emails about Ellen’s progress during the school day, articles about medical breakthroughs related to Ellen’s condition, and has given our family so much support with kind words, encouragement, and empathy throughout the past two years.  Recently, Ellen missed school for a medical procedure and at lunchtime, when Ellen would usually be there getting her medicine, Mrs. H. called to see how she was doing.  Those small acts of thoughtfulness and kindness are the things that make Mrs. H. an everyday hero. We all feel so lucky to have her in our lives.

But more than that, more than our nomination, I was moved by the number of children who were also honored.  Children who volunteer to help out with the integrated PE program, children who play on the integrated club sports teams, children who organize 5ks and “Spread the word to end the word” events and autism awareness and special education assemblies (including my favorite–four 7th graders organized a school-wide assembly with topics that included “how to be a friend to someone with special needs”).  I was floored.  For as much as we hear about bullying and as much as I know most of us must worry about the emotional lives of our children as they grow more independent, it was so deeply heartening to learn about the kindness and caring and love that children can show for each other if that is what is encouraged and nurtured.

Ellen kept asking me why I was crying about other people’s stories and I just had to say, over and over again, “It just makes me so happy to hear about people being so kind to each other.”  It felt like the perfect mother’s day gift.

The Cleanest Pig

Ellen had a minor disappointment yesterday that was causing her great distress at bedtime.  We were laying together in her dark room and she was crying and I decided to share my own recent disappointment with her.

Me:  Ellen, you know, something happened to me this week that was a disappointment too, so I feel like I know how you are feeling.
Ellen:  (through tears) What was it?
Me:  Well, a friend of mine from work nominated me for an award, and I didn’t tell anyone, but I really wanted to win.
Ellen:  Did you win?
Me:  No, someone else won, and I felt a little sad about it when I found out.
Ellen:  (no longer crying)  Well, what was the award for?  Was it, like, for the cleanest pig?…Or the goodest eater?…
Me:  (I am trying not to lose my fucking shit here.  Because…the first award she thinks of is…CLEANEST PIG?  WTF?  Goodest eater I totally have on lock, so that one is understandable.  I did not want her to think I was laughing at her, so I took a few deep breaths, cleared my throat, and carried on explaining that it was not for cleanest pig or goodest eater, but something else entirely.)

My story got her to stop thinking of her own disappointment and she was able to go to sleep, likely dreaming of impeccable pigs pinned with large, shimmering ribbons.

Why Harry is crying…

“My pants are too tight, Mama.”
“Well, maybe you could take off one of the three pairs of shorts you have on under your pants?”
“NO!” (sobbing) “No! No, Mama.”

This and That

Ellen turned 6!  We had our families over for pizza and then all went in a caravan to her tball game.  Jbone says we set a record for attendance and noise level at that game.  Ellen was so proud to have so many people there cheering her on.

At Harry’s party I made the offhand comment that I would have to buy Ellen’s cake because I probably wouldn’t be up for baking it so soon after my surgery.  Ellen overheard it (I thought she would be thrilled!  I offered to buy her a Frozen cake!) and was so sad, so Grammy covered for me and said she would make the cake.  It was awesome.

Frozen Cake

Ellen is all of a sudden looking very grown up.


Ellen finished tball with a flourish, in a game at the big stadium with her name announced as she came up to bat and everything.  She got a pretty sweet trophy with her name on it.  She had a really terrific experience this year, thanks almost entirely to her awesome coach.

Lions Roar!


Ellen had LTM for one night two weeks ago to see how things are going.  She’s again having a lot of seizures at night, to the point where the doctor is again concerned about her development.  We are going to do another neuropsych evaluation to see where she is and go from there.  She’s having more seizures during the day too (though still not many), and we’re concerned that we’re beginning another cycle.  For now we are just going to wait and see (and do the neuropsych.)

A friend from my mom’s group has a tradition of taking a photo of her kids on the first and last day of Kindergarten in the same outfit, so we did it.  She got taller and her baby face looks more mature, but to me the big change was in her confidence.  (oh, and they removed a big pine tree from our steps)


First Day of K


Last Day of K

John and I are still actively looking for a house/condo.  The time is running out to move anywhere except where we are, because we’ve agreed that once Ellen begins 1st grade, we will stay in that town.  We’ll see.

We traveled to NH to stay with Miss Chris and John last week and an upset stomach turned into an emergency appendectomy for Jbone.  Thankfully, the kids stayed with Miss Chris and John and barely noticed that Jbone or I were gone.  Spending all day swimming and riding your bike and hitting up the playground and playing with new toys will do that for a kid.  We cut the trip short so Jbone could come home and recover and arrived back to a house with no power!  It was a very exciting few days.  We missed out on seeing fireworks this year.


The kids and I took it easy over the weekend, getting out and about on long-ish adventures to give Jbone a chance to heal.  We went to the common to draw with chalk and ride bikes and took the dogs for an infinite walk in the sunshine and climbed a lot of rocks along the way.

tree on the common

drawing on the common

chalking the common

Nana and Papa came to visit two weekends ago and remarked at how tall Harry has gotten.  A few days before, the dogs were barking at the front window and I said, “Stop that Gertie and Roxie!  You’re scaring the baby!”  Which is what I always say, because Harry always gets freaked out when they bark their heads off.  Harry turned to me and said, “Mom, who’s the baby?”

silly face

hi mom

chatting about something important

This and that

Tonight the kids went to bed at almost 9:30, which is pretty late for them.  They usually keep to a pretty predictable schedule around meal times and bedtimes.  We were held up because John and Harry spent the afternoon and evening in the ER.  It actually was kind of an accident that he ended up going.  He woke up this morning with a weird rash on his face–it was hot and kind of purplish.  I wasn’t too worried about it because he’s pretty rashy in general and he has had a bear of a case of poison ivy for the past two weeks.  But he was pretty lethargic after his nap and it didn’t seem any better despite the dose of benadryl I gave him before his nap.  I wanted to give him some ibuprofen because John checked and he had a fever but I didn’t know if he could have ib and benadryl.  So, that’s why I called.  To check on whether I could give him both.  And the on call nurse was unequivocal:  he had to be seen today in the ER because it sounded like cellulitis, which can progress quickly and be dangerous (she was right.)  The fact that he already had a fever meant that it had to be today, not tomorrow, not Monday.  The kids were already in their bathing suits and preparing to accompany John outside to wash his boat.  Harry was kind of bummed at the change of plans but mostly he rolled with it.  Ellen and Harry packed a bag for him to bring with books, a snack, and a “teenager inter turtle” (TMNT).  John says that the doctor in the pediatric ER was the oldest working person he had ever seen.  Over 80, maybe 90.  He delivered a bag of assorted candy for Harry before he was discharged.  The resident says that he assembles them at home and brings them in which is slightly weird but also very awesome.  I mean, that’s someone who became a pediatrician because they love kids.  Also, the hospital we take the kids to (because it has a top of the line pediatric ER) is in a very economically depressed area.  I’m sure that those bags of candy are a very bright spot for a lot of kids who visit there; just as it was for Harry.  So, he’s on some high-powered antibiotics, ate a lunchables for dinner at the very late hour of 8:45 at night, and is now resting happily.  


Today both kids had tball in the morning back to back.  It was a glorious, sunny day.  It was a big outing for me, out of the house for almost 3 hours.  It’s only the fourth time I have left the house in a week and a half.  I had a breast reduction on May 27th.  It was at once no big deal and the hugest deal ever.  As my mother put it when I told her I had had the consult:  I have been waiting for this since I was 15.  I was actually approved by my insurance last year but I couldn’t get the surgery scheduled at a time that worked with my work and family schedule, so I had to wait until this year.  Up until the very moment that they put the oxygen mask on me to put me under, I thought it would be canceled.  I just kept feeling like it wasn’t going to happen.  I had waited too long; there was no way it would actually take place.  But then I woke up and it very decidedly did take place!  It was pretty painful for the first few days but it’s getting better every day.  The main symptom at this point is just a crushing fatigue, even after doing something really minor like loading the dishwasher.  I am really lucky to have a partner like Jbone, though, who has been forbidding me to do things like loading the dishwasher and pulling full on solo parenting duty.  Miss Chris came out to get the kids up and to school on the day of surgery and my mother came out for 5 days in the early recovery to give Jbone a break and take care of me.  I really am so lucky.  I started trying on clothes and in a strange and very amazing turn of events, most of my clothes still appear to fit me, just…better.  Woot!


Jbone went fishing today and caught his biggest large mouth bass of the season so far:  4 pounds, 13 ounces.  Last weekend, he went fishing for striper (courtesy of Grammy) and caught a huge striper and then filleted it and breaded and fried it for us.  It was so good.  


We have been looking at houses and condos pretty aggressively and are hoping to buy something by the end of the summer.  We found a place months ago that we kind of fell in love with and then it didn’t work out.  We don’t need to move so we’re just taking our time.


The kids chose a summer project (Ellen had most of the ideas and Harry happily agreed).  They are learning the ’50 States that Rhyme’ and planning a late summer concert “with snacks–like chips…and…crackers…”  Everyone’s invited.  I will be home with the kids two extra days a week beginning at the end of June and I am looking forward to it.  They are so sweet and naughty and wonderful and days with them are so exhausting and funny.  They rarely nap now (they did today because they were both really tired after being out in the sun and running around at two back to back tball games–now I’m glad they did since they were up so late!) which is both sad and opens up a ton of new possibilities on any given day.  


Today at Harry’s tball game I was sitting next to a dad whose kid was playing and his daughter, about to turn 1.  She reminded me a lot of Ellen at that age.  She was chubby and serious and smiley and had bare legs and a big white hat.  It made me ache that we won’t be doing that again but also I felt like not doing it again is really really right.  I look forward to a lifetime of snuggling other people’s babies.  


Ellen is about to turn 6 years old!  She has a tball game the day of her birthday and then we’ll come home and have Chinese food afterward.  Her IEP is now in place and she is making strides with reading.  She has a few books now that she can read start to finish and is very proud of herself.  She and I spent the afternoon and evening together today and she is just a delight.  We played Sleeping Queens and play dough for about an hour and walked the dogs (very slowly) and then watched 13 going on 30, which was good and she enjoyed and was also probably slightly inappropriate.  We originally planned to watch Matilda, but the portrayal of the parents was really graphic (their abuse and neglect) and she was having a hard time with it, so we switched.  When Harry came home from the hospital, she was so genuinely excited.  She ran to the door and gave him the biggest hug.  When he sat down to eat she sat next to him and patted him and rubbed his back and sighed.  They are so close and love each other so much.  It is probably my favorite part of parenting–seeing them together.  Epilepsy today is nothing to write home about.  We are seeing some very slight seizures but they are very few and far between. We are doing a 24 hour LTM at the end of June with the hope that we may be able to reduce some of her medications if things are looking good at night.  We are all cautiously hopeful.


Mother’s Day

Yesterday was a nearly perfect day.

Jbone took the kids to the grocery store where they each picked out a dozen roses for me.  They couldn’t come to a consensus on the color.  On the way they discovered that John’s car had no brakes, but they got lots of yummy food (they are fixing the brakes today, to the tune of almost $900!) and the flowers, so I couldn’t complain. 

They woke me up when they got home and I got to open my presents and have many snuggles. 

We took the kids tractor (this thing, courtesy of Grammy and Papi:)

Imageout for a spin until the batteries ran out and then the kids went for a bike ride while John and I sipped coffee and walked alongside them.  It was so sunny and so gorgeous out. The kids and doggies each posed for a photo for me after we came inside.

My first and snuggliest baby:


My silkiest, dumbest baby:


My bravest and kindest baby (sporting what I call her ‘Diana Ross’ hair and remnants of a neck tattoo):


My funniest and wildest baby (you can’t see them but he was wearing little pink gingham shorts with bows on them that Ellen cast off this season and he snapped right up):


Next Ellen and Jbone made brunch while Harry sat on my lap in the sun and did puzzles.  Aunt Ambie taught Ellen how to crack eggs in April so she was in charge of that.  They were very tasty.  We had all my favorites:  turkey sausage, english muffins, and cheesy eggs. 

Roxie had a bad seizure at the end of brunch so we snuggled on the couch and John and I tried to decide whether or not to change our plan.  Originally, we had planned to go for a boat ride, but once his brakes went bad, we had planned to take the dogs and kids for a hike around the reservoir.  We didn’t want to take Roxie if she was tired from her seizure, but honestly taking her swimming and hiking is one of my great joys and I didn’t want her to miss out if she was fine.  Eventually, we decided to take her and set off.

It was noon and both kids fell asleep in the car on the way to the park.  They awoke rested and recharged and we started the hike.  It was pretty busy at the park and I was a little sad that we couldn’t go boating because it was a perfect day for it.  We walked for a while and found a spot with a little bridge and a little waterfall and set up camp there.  We threw Roxie’s fish into the water for her and both dogs explored the woods.  The kids sent fairy boats down the waterfall and we all waded into the (cold!) water and got all wet. 

Around 3 we headed back and stopped for ice cream on the way home.  I got ginger, Harry and Jbone got oreo mint, and Ellen got chocolate peanut butter cup.  The place we stopped has amazing ice cream.  The dogs licked up after us. 

Our final stop was at Ellen’s school because she did the monkey bars for the first time last week and was desperate to show us her new skill.  Kindergartners aren’t allowed on the monkey bars all year but they just got permission to start and she was so proud of herself.  She showed us all and we were proud too.

We headed home and the kids took a tub and then brought their sleeping bags out to the living room and we turned on Hook (my choice–one of my favorites.)  John went out to get sushi (also courtesy of Grammy and Papi–the gift certificate was my birthday present!) and we ate (waaaay too much!  The place we go does sushi and Korean BBQ and so with your order you get banchan, a sample of 6 different appetizers that rotate and they sent all our favorites–potato salad!  fish cake!  bean sprouts!  kimchee!  So much yum.) and watched the rest of the movie (well, Jbone watched the Rangers game) and then all hit the hay.  It was an amazing day from start to finish.  I feel so lucky that I get to live this life.