December 29

When I wrote a week ago I didn’t mention that we had just had a harrowing morning moment with Sarah. We were in Florida for vacation and our first day and a half went quite smoothly, in part because we were exceedingly flexible with our timing and the kids didn’t even need to agree on what to do. Sunday morning we had a scheduled trip to the Everglades and Sarah was not having it. Unfortunately this was at 6am and involved her screaming a lot, to the dismay of our hotel neighbors who knocked on our door twice because of the noise. It turned out that the scheduled trip was cancelled anyway because of the weather, but we didn’t know that until Sarah’s personal storm had passed and we had given up on the plans anyway. Amy and I brought breakfast to the room and then she and Carl went out for a hike in the rain in the Everglades anyway. I stayed with Sarah, who napped for three hours. I don’t know if the need for three hours of sleep was behind her massive upset or if the upset wore her out to that degree. Either way, we (re)learned that whenever possible it is best not to have timed things in the morning. Or maybe at all. Except then the next day the girls went to the scheduled Kids Camp at the hotel and going there was no problem at all. 

Difficult moments aside, overall we had a wonderful time. Sarah’s pool time was amazing. She spent all of her time ducking her head under water and moving her limbs and practicing not getting water in her mouth. I would even call it swimming, with a need for some refining of technique. This is huge and amazing. She was wearing her goggles and tossing a dive ring for herself to retrieve. Collectively she spent hours doing this. She also loved playing on the beach, watching the waves. Amy loved the pool time and collecting shells and eating delicious pancakes for breakfast. It was quite windy and there were more gulls and terns and pelicans than I have ever seen on a beach. We made the mistake of attempting to have a snack while on the beach, but were immediately accosted by swarming gulls who wouldn’t leave us alone until I hid the bag of food under my shirt. It was a little scary. 

After our time in Florida we flew to Philadelphia, luckily allowing plenty of time before our flight. We had time for the valet parking service to temporarily (30 min) lose our car and for Sarah’s antiseizure meds to set off a security alert that meant a pat-down for me, which somehow triggered another alarm on their chemical-testing wand, which meant taking me to a room for another pat-down, which didn’t set off an alarm. I was sent on my way with the medication. 

We had a wonderful time in Philly with Mom-Mom and Pop-Pop and a wonderful time in Wilmington with Grammy and Granddad and uncles B and B. Somehow Santa knew to fill stockings in our hotel but bring the rest of the presents to Mom-Mom and Pop-Pop’s house. It is hard to know how much belief there is in Santa, since the girls also clearly know that they give and receive presents to and from people. 

Carl got the girls step-counters for Christmas. At first Amy was walking all over to get more steps. Once she realized the measurements aren’t perfect she got mad and hasn’t really worn it much since. Sarah only wore hers once, but it was a memorable afternoon because she and Amy were running laps around a small track to prepare for the kids marathon in May. They were eager to check their step count after each lap and to outdo the other. Sarah’s stamina was impressive and surprising. 

It is interesting how within a person and a day there can be such intensely frustrating moments and such intensely amazing moments. 

Amy’s art continues to amaze me. This morning she drew a portrait of her favorite stuffed animal, complete with many specific details. She also became Grammy’s special mealtime helper, in a way that reminded me of my younger years helping at my grandparents’ house. 

December 22

Amy was much better from her cough by the time her school’s winter concert came around on Wednesday night. Carl and I also had tickets to see Straight No Chaser so we had a double header of an evening. Our sitter A. came to Amy’s concert to be ready to take the girls home afterward while Carl and I went downtown. Usually the only way to have Sarah sit quietly for these concerts is to let her have her iPod. A. has some magic powers and sat and talked with Sarah while they watched the concert!

Sarah lost a tooth at school and it was truly lost. Amy suggested that Sarah could write a letter to the tooth fairy, as Amy had done in the past. Amy wrote the letter with blanks for Sarah to complete with the general tooth location and her name. This was apparently sufficient for the tooth fairy!

Sc bequeathed her red and white striped pajamas to Sarah. They are big on Sarah, but that has never stopped Sarah before! Amazingly, they are the same brand as the striped shirt and hat that I got for Sarah recently. This is great because then I can wash one shirt at a time without protest. 

I finished teaching my last evening course. I will occasionally teach an evening class but not an 18 week course. I loved my students, but it was hard for me to get home at 11pm and wake up at 5:30am the next day. I will now only teach a morning course, in addition to my Alexander teaching that gets sprinkled around at varying days and times. I have been feeling very grateful for having jobs that I love, wonderful students and clients, and that part of my job involves receiving massages from my students!

I hope you all had snuggly solstices. 

December 15

Last Sunday the girls decorated our large gingerbread house. Once they were allowed to sample it, the roof was broached. This was a new experience for me to eat the actual gingerbread so early. Normally the house sits so long (with just candy being eaten) that the gingerbread gets stale and hard. Then if you wait long enough it gets soft again. That is when I was used to eating it.

Also last Sunday, we went to lunch at Aladdins. This is one of our favorite places to go as a family because they are quick, kid-friendly, and relatively healthy. Amy hadn’t had much for breakfast and had waited much longer than usual before having more food. I assumed that her distress at Aladdins was due to being very hungry. She was miserable and then had chills. She said her legs didn’t feel right. I started to freak out. We did get some food and drink in her and then I took her to the car to call the healthcare advice line. We went home and Amy had advil and a nap. When she woke up she seemed completely better. She went to school on Monday seeming totally well. Monday night took her down with a fever and repeated puking. So Tuesday she was home and enjoyed some quality snuggle time with our cat Olivia. Wednesday she seemed better aside from a cough. Thursday, similar, though the cough was a bit more intense so I questioned my judgement. It is hard when Amy fights so hard to go to school. It is hard for me to force her to stay home. Thursday night her cough was so persistent she couldn’t go to sleep so we went to the Express Care walk-in service at the Children’s Hospital. Two hours later we were home after she had been given liquid steroid and a breathing treatment with albutirol. The doctor said her coughing sounded like that of someone with asthma where they get in a cycle of inflammation causing coughing which then causes inflammation which causes coughing. We were sent home with a nebulizer to continue breathing treatments until her cough is much better and 4 days of the steroid to help calm everything down. These treatments have helped immensely. Now it is notable when she does cough rather than being notable when the cough abates for a minute, which is how it was on Thursday evening. 

Due to Amy’s situation I was ripe for the duping on Wednesday morning when Sarah uncharacteristically came downstairs as soon as I turned on the hall lights to wake her. Usually we go through 4 rounds of my turning on the lights and her scampering out as the Light Bandit to turn them off.  (As she says, "the Light Bandit strikes again!" Amy amended it to be “the Light Bandit Stripes again!” Then she comes down for breakfast, sometimes reluctantly. Wednesday she came right down and asked me if she could stay home because she didn’t feel well. I thought, I always distrust Sarah about these things and then so often I realize I should have trusted her, so this time I will trust her. Alas, in this case perhaps I should have doubted. It was very clear, after all calls had been made and plans cancelled, that she was totally fine. I chose to focus on the day as a mental health day, because I used to need those when I was little and my mom was wonderful to let me have them. She did rest more than usual. And she does have a cold now, so maybe somehow letting her have a day at home when it wasn’t technically needed helped her evade getting something as intense as Amy’s situation. I think I have made more peace with the fact that making decisions about kids staying home or not is rarely clear and that I will almost always have doubt no matter which decision I make.

We watched Mickey’s Christmas Carol and Sarah loved it even more than usual. Her favorite part is when Scrooge falls into the fiery pit of his own grave. After the movie was finished she really wanted to re-enact that scene so with Carl and Amy’s help she created a box with a hole into which a Donald Duck figurine could fall. Amy made flames from construction paper. Yesterday Sarah wanted to have a hole into which she could fall so she and Carl made one from pillows. 

My Christmas present to myself was finally tackling the giant, overflowing, overstuffed “to file” and “to shred” bins that sit on our mail shelf. Part of the problem was that our filing system in the basement was overstuffed so it was really frustrating to have to add anything. I spent a few minutes pulling out folders that I thought we didn’t need anymore and having Carl verify my decision. We now have a really big pile to take to a shredding place. At least half of what is going is old IEP notes and weekly progress reports from Sarah from when she was in her first preschool or even before that when she had Early Intervention at home. Even looking at the piles I had some sense memories that turned my stomach. Not that we didn’t have lovely people helping us and not that she didn’t progress wonderfully, but that was just such an intense time filled with worry and a lot of struggle, especially around getting Sarah to eat. I also decided we didn’t need every printout from every doctor’s visit she ever had. My promise to myself going forward is to never let the filing system get so frustrating again and to never let the bins on my mail table overflow again. 

I’ve been feeling grateful for our warm house, our healthy food, our time together as a family, reading Christmas books to Amy (because who knows how much longer I will get to read kids' books out loud? that hardly ever happens anymore), and having the time to deal with the areas of mess that have become fixtures in the house. It feels good to have that perspective rather than focusing on the drudgery of needing to deal with the mess. Clearly if the mess has been around this long it doesn’t really need to be cleaned, but I know I feel so much better when things are neater.

December 8

I can’t remember if I have written of this before, so it is possibly a repetition. Whenever we pass a Dairy Queen Sarah will whisper, “Dairy Queen.” For some reason this is hilarious. She often then whispers whatever she says next, which becomes equally hilarious because of being whispered.

This past week Sarah told me when she got her period. I almost didn’t believe her because she so recently had it, but her doctor informed me that this first year can be quite irregular. So to my credit, I didn’t tell Sarah that she was wrong. Instead we went to the bathroom and she got her special undies. I was most impressed by her body awareness and communication of it, which hasn’t happened before with respect to her period. 

Sarah and I had a wonderful SR session. What made it wonderful was that I couldn’t make the trampoline Sarah wanted and she was upset about it for about 45 minutes. Because it was our SR time and Amy was playing with M., I didn’t feel any pressure to move past Sarah’s upset. I was also sleepy so I just sat and listened while she cried, screamed, pleaded, and whined. When our time was almost done I said it was time to take her shower. She protested for a few minutes and then switched to calm ease. She took her shower and washed her hair easily. She seemed calmer overall after her crying session. While I am well aware of how magical a big cry can be, I still marveled at it and was grateful for the reminder. The next morning also went extra smoothly in terms of her getting ready for school.

Sarah had been saying she wanted to be Santa and wanted to wear red and white stripes. She wanted to go to the Red and White Stripe Store, a creation of her imagination in which everything would be striped red and white. Friday morning I had some free time so I went to a thrift store and found a large red and white striped shirt with a matching hat. I also got red, white, and green plaid pajama bottoms. She looks adorably cuddly and has been wearing the whole ensemble since her return from school on Friday.

I started reading The Gratitude Diaries by Janice Kaplan. I have had it on my shelf for months and almost wanted to roll my eyes at it because of course I know that gratitude is a good thing and makes people feel better, blah, blah, blah. While I may know some of what is written, that is a very different thing from applying what I know to my life! I am so glad I have started reading it. It has already been helpful to shift my perspective in many situations to what I can appreciate rather than what I can judge or begrudge. This has helped me be happier more often. I’m also intrigued by the advice regarding showing gratitude more often to people in my life, especially those closest to me. This means focusing more on the adorable creative qualities of my favorite children rather than grumbling about the tissues and socks strewn about. Or possibly being grateful that we have such a snug, warm house with an ample supply of tissues and socks. 

I made miniature gingerbread house pattern cookies, which the girls assembled and decorated, sampling their way through the decorations. Today we will decorate the giant house that takes multiple days for the frosting to set into enough stability to handle the pressure of decorating. 

Amy has been drawing many animals using a how-to-draw book. I am amazed at her ability and her innate drive to create art.

Last weekend we got our tree and Sarah was the one most eager to start decorating it. She participated the whole time and then started taking ornaments off so she could rehang them. This is a shift from past years when she would lose interest part way through. Our cat thinks the tree is tasty despite repeated tummy-upsets because of eating it. She also climbed fully into the lower branches yesterday, which is a first in all of my years of having cats. I know many cats do it, but I was just hoping to have my cat refrain.

I am so grateful to all of you for witnessing our journey and my thoughts about it. I feel loved and supported knowing you are with us and interested in our tears and triumphs. The times that some of you write back mean a great deal too. And I love hearing about your own lives and journeys! I really do!!

December 1

Happy Thanksgiving! We had a wonderful, bountiful day. Grandma made songbooks that included some of the girls’ favorite songs. Amy belted out “Let it Go” with gusto. (Some day I want to name a pet Gusto so I can say that I do everything with Gusto.) Amy and I did a duet of the Vampirina theme song. Sarah took over the piano from Grandma. We all sang many of the songs together, though Amy got upset with the ones she didn’t know. For the rest of the time, Sarah often only wanted to play with Grandpa. Sonia and I did our usual food preparation where we each make enough for the entire group and then put it all together. It was as delicious as always. 

Earlier in the week Sarah did Madlibs with Amy and me. Sometimes she would supply a word. Sometimes she would be the scribe, either asking us for words or copying the prompt into the blank (eg. noun). Since doing her spelling homework is not her forte, I sent the book of madlibs to her teacher to show her what Sarah had done. I haven’t heard back. Still, it amazes me that Sarah was doing all of that with the madlibs, and her writing was correctly on the lines instead of bisected by the lines. 

As you know, baths for Sarah can be a struggle especially when it comes to washing her hair. For a while it was going well but recently had become quite challenging for all involved, with screaming and tears for Sarah and helper Amy. A couple of weeks ago, Sarah then accidentally pressed the overhead shower button. That startled her and Carl turned it into a reference to her favorite thing of a circle with a line through it meaning “no.” Suddenly she was having a good time. Since then, she has taken three showers, one of which still involved upset regarding hair. I bought baby shampoo that she can pump herself. She had been requesting the baby shampoo, of which we had a small bottle left over from years ago. Her last shower was almost fully independent. My only role was to prompt more water or more scrubbing, but she did everything herself. Fingers crossed for today’s shower. 

Yesterday, Carl bought some storage shelves and put them together with Sarah’s help. True help. She hammered shelf supports into their holes and she cut the straps on the box. 

Sarah has been making her own hot chocolate. This is wonderful independence, with the downside that she gives herself an extra hot chocolate per day. 

There have been a few of our customary rough spots, such as when Sarah got home from running  errands with Carl and promptly walked over to where Amy and I were playing Go Fish and pushed our cards off of the playing surface. There was also a time when I was feeling sad and she was laughing while saying she would make me sadder and would take my tissues. I just don’t know how to handle such moments. For the past couple of nights I have been spending a few minutes quietly imagining some of the challenging moments and directing my body to feel grounded and easy, so that that can become my habit rather than my tightening. I have tried this in the past and found it helpful but then somehow let the practice go. I am hoping this will help with the moments that dumbfound me. 

Amy has been her usual amazing self, creating art, reading, making friendship bracelets, doing gymnastics flips on the sofa, being on top of the world and then being furious with all of us and then somehow being happy again. Amy also likes to be my lap cat, which is adorably snuggly.