September 30

This week Sarah has been testing boundaries. I didn’t originally see it that way. I saw it as supremely frustrating and I didn’t know how to make things better. Sarah has been purposefully doing the opposite of what we say or purposefully ignoring us. This isn’t new, but it seemed like someone turned up the volume knob on it. This morning, Carl helped me see that we could frame it as boundary testing and that maybe she is on the verge of a breakthrough. We know that when Carl was growing up he would sometimes be more challenging and contrary right before a developmental breakthrough. Looking at Sarah’s behavior that way helps me feel so much better about everything. Carl also had the idea that we could think about ways we can give her more independence or talk to her more about events and transitions before they occur. I had been in a mode of basically holding Sarah at arm’s length, not wanting to engage or really be with her because it felt so difficult. I felt like I couldn’t reach my Son-Rise mentality for all I was worth. Now, with my picture of Sarah reframed, I have renewed energy to be with her, a true desire to be present with her. When I give a massage, I always think that it begins right before I knock on the door. It is in that moment that I reconnect with my whole self. This morning when I went to tell Sarah that her ipod turn was done, I felt that same kind of preparation. I felt love for Sarah (rather than dread or annoyance) as I approached the door. I felt connected to my whole self. That felt so much better. Now to remember that my time with my children begins right before I am actually with them. It is about making that choice to love being with them rather than tolerating them. Making that choice is easier when I am fed, watered, and feel that all is not lost on the parenting front.

At school Sarah has been disruptive in a big way in computer class for two weeks in a row. Her teacher and I agree that it makes sense to reduce the amount of time she is spending in the regular classes so she has more time in the Resource Room, where she gets more one on one attention and can also just have a break and do sensory play. Up until this decision she has been attending many of the regular fourth grade classes for their duration, including sometimes two in a row. Considering that, wow!! Holy moly. I am amazed that Sarah could do that and still be doing as well as she is doing. I appreciate her teachers and school program so much that they have the flexibility to realize this may not be working for her and that they can adjust things accordingly. This is the reason we picked the St. Anthony school program. They adjust per child in a way that feels nurturing rather than pejorative. It is also a good reminder to allow for more SR time at home, whether in the SR room or not. It’s about the mentality of being with her, giving her full permission in my heart to be as repetitive as she needs to be or just really be her full self without my fighting it. 

Sometimes I fight who she is, my grief at who she might have been and how our life might have been tightening my parenting so that everything is miserable. She can be passionately stubborn and contrary and screamy and whiney. She can also be sparkly and funny and sweet and amazing. I know it isn’t just my parenting that leads to one mode or the other, but when I am more relaxed and playful that certainly helps. When I love her truly and actively delight in who she is, that makes a difference. This morning I am just marveling at how everything in me could shift so much when Carl helped me reframe the situation. That is Son-Rise. It is about changing how we think and how that can ripple through everything instantly. It’s not about forcing ourselves or faking things. It’s about reframing so we can remember our love for our kids, our selves, our life. I am continually amazed at how much hard work it takes to learn not to work so hard at things!

As I write all of this I find it funny that I’m not with her in this moment. I have had moments of interacting, some of which were easy and some of which needed a reminder to myself to stay present and light, not falling back into my old patterns and frustrations.

Grammy and Granddad are visiting this weekend. My tension around Sarah has certainly been present thus far, influencing how I view their time together, so I’m hoping that today and tomorrow can be easier all around. I’ve been aware of how loud Sarah is sometimes and how much she hasn’t responded to us asking her to be quieter or not climb all over her grandparents when they aren’t ready. I do know the girls had fun dancing to music and watching Grammy dance too. Sarah has also enjoyed playing in their van. 

This Tuesday I leave for a week in England for continued Alexander Technique training. I’m not sure if I will write next week or not. Thank you a million times over to all of the people making this trip possible.

September 23

Why is she crying?

Because she is 7, and she is scared of dental work. 

Why is she crying?

Because she is 11, and she is learning to tie her shoes in a brand new way, and it feels too hard. 

Why is she crying?

Because she is 41, and she is frustrated by her children but feels that each failure of theirs is a failure of hers. 

Because parenting is hard. 

Because the cat doesn’t understand the concept of sleeping in. 

Because she is bad at getting her kids to practice their piano homework.

Because she wishes she didn’t express chagrin so often towards her children. 

Because she wishes she didn’t lose her sh*t so often (losing it being on quite a varied scale of intensity). 

Because she is slightly scared each night that her daughter might have another seizure. 

Because she is worried that her daughter who used to be failure-to-thrive is now eating more than her body seems to need. 

Because her daughter ignores her repeatedly. 

Because that daughter has come so far that every moment should be celebrated instead of having any tendril of frustration. 

Because the house is a mess. 

Because she is not as thin as she wants to be. 

Because people will judge her for struggling so frequently. 

Because she wants to be real and honest but also have people see her strength and understand that most of the time she really does have her sh*t together. 

Because she is embarrassed by the sustained love of those who see her at her worst.

Because if only she could do things differently…

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I actually am feeling quite good about things this morning. We have had a lovely morning of snuggles, piano practice, and making Halloween costumes. Yesterday was hard, and I had a hard cry in the bathroom, sifting through the above thoughts. I’ve been noticing how much I second guess myself and judge so many of my decisions up one side and down the other. I’m aiming to do this less often. Noticing is the first step. A few times this week I did succeed at just letting go of the judgement or worry about what I was feeding the children or doing with my time. The framework of the questions and answers came from Amy’s dental appointment to take care of some cavities. It did not go well, and we need to see a pediatric dentist to complete the work. The appointment began with her crying and the dentist perplexedly asking why she was crying. He was baffled. He wasn’t judging it, but he just couldn’t comprehend it. I couldn’t comprehend his confusion. It was so clear to me that of course she was scared and of course she would be crying! At first I was grumpy, but as I sat with the grumps I realized it was a gift of a question paired with my not judging the answer. I didn’t judge Amy at all. So…. what if I didn’t judge Sarah for her struggles? (That is harder. I have an easier time being soft towards crying than I do towards screaming.) What if I didn’t judge my own struggles but saw them as similarly obviously reasonable? (That is harder still but is really truly deeply the same thing as Amy’s situation.)

A few days before Sarah’s final OT appointment, I realized that the method they taught her for tying shoes doesn’t undo as tied shoes should. When you pull the two ends then the bow should magically dissolve. Hers turned into a box knot. Every time. Even when I did it. This is a method also taught via YouTube as some magical way of tying shoes. Except no one seems to realize that you need a grown up to help you undo the resulting knot. What is amazing is that when I explained this to Sarah’s wonderful OT she had me demonstrate the way I tie my shoes (which magically untie when you pull the ends) and she helped Sarah learn it. She helped me with ideas for how to mark Sarah’s laces. Sarah will have to undo her habit, but luckily we caught it before the habit became too entrenched. I taped her laces in specific places to help her with where to grab and where to push through. She only had one time of doing this since OT, and she was frustrated, but that is par for our course. I’m still hopeful in general.

On our way home from OT, Amy started making a list of the best moments (spelled “momits”) of her life. Item number one was Sarah’s last day of OT. Amy was so proud of Sarah. The list did not go beyond item number one.

One day Sarah donned Sc’s purse and said, “I’m the mailman. I’m broughting you a package.” The earnestness just broke my heart. That seems like a sophisticated error and was beyond adorable. 

The girls have had spelling homework this week. It has been wonderful watching them write out their words as I say them. Sarah has done her list perfectly each time (see, she, he, we, feet, …). Amy’s words are harder (these, safe, quote, about, again, also, cube, …) so have been a bit more challenging for her but we have had fun breaking them into easier bits to remember. 

Sarah’s new favorite picture is one of Carl riding a horse. Amy still doesn’t believe it is even him because he looks so different from usual. Sarah now likes to ride the arm of our couch, pretending to be Carl riding a horse. 

Thanks to wonderful suggestions from many of you after last week’s update (this is why it is good to share!), the girls now have their own mixing bowls, measuring cups, and measuring spoons. I intend to get them their own ingredients or have enough of my own that I don’t have to worry about scarcity. They have made many cupcakes and muffins, still with some of my help and input. I’m amazed at how easy it is to make palatable baked goods without a recipe. They aren’t amazing but they are sufficiently good. Sometimes the girls' love of baking leads me to feel out of control because it seems that they are mixing something every time I turn around, but I know in the big picture this is actually wonderful. 

Lots of love to all of you. Why are you feeling however you are feeling? Because you are you in this moment! May we all accept our feelings with the same protective assuredness of their validity with which I accepted Amy’s tears. May we all find such simple clarity in our muddy, complicated lives. Anyone want a muffin?

September 16

We started Sarah’s Oxcarbazepine a week ago in the evening. That is her anti-seizure medication. I’m trying to learn the name of it so I can direct a sitter to give it to her if need be. If I only remember its other name (Trileptal) that isn’t written anywhere on the box or bottle, then that isn’t much help. We think she is handling it ok in terms of side effects, which must be minor if she is experiencing them at all. Today we increase the dose. We have to build up to the desired amount.

Yesterday felt hard. It was the first time this season that I took the girls to gymnastics, and I felt like my presence did the opposite of helping. It seemed like Sarah was purposely trying to annoy me by doing things she knows I don’t want her to do, such as cracking her knuckles and sticking her hand in her mouth. I moved away from her group but stayed in the room. Since her group has two teachers I really think a parent in the room is no longer needed and may be a hindrance. 

We had a couple of parties to attend, and Carl was out of town for the day. I felt like I needed to be with Sarah a bit more, either just wanting to give her some company so she wasn’t eating alone, or to make sure she didn’t do things she shouldn’t. It didn’t always feel easy to go connect with other grown-ups. Sometimes I have plenty of ease and confidence. Sometimes I don’t. Yesterday there were times when I felt lonely, in a way that is unusual for me. It was the loneliness that other parents of kids with special needs describe and I think I am so fortunate to avoid. Sometimes that loneliness can hit like a ton of bricks and it is a mucky load of awfulness because it is me feeling separate and not able to hang out with my friends because of my daughter. That is how it feels. I know it is really because of how I am seeing the situation. Then I judge her and begrudge her. Then I feel like the worst mom, wanting her to be more this and less that. By the end of the second party things were ok again. I connected with my friends. Sarah played independently. Sarah and I had some sweet snuggles and laughs. Still, yesterday was hard. 

Sarah now wants to make pretend food with real ingredients all the time. I do not want this. It was fine when I was ready to supervise. I do not want it all of the time when I am not watching. I do not want to be in the kitchen all of the time. I do not want her using up all of my ingredients so that I won’t have them when I want to make real food. With this and other things, such as being on time, I feel like there is a constant battle within me where I want things to be a certain way, but I judge that and think I should loosen up more, but then feel out of control and frustrated. So I’m frustrated and judgmental and then judging myself as a bad person for my frustration and judgement. 

When an update feels full of difficulty then I am tempted to erase it or edit it, but then I remind myself that I’m probably not the only one who has these moments and maybe all of us can feel less lonely if some of us share the feelings. That is what I love most about some of my favorite writers. So. I’m sure next week will be better. I’m sure today will be better. 

There is one shining note of wonderfulness. This isn’t quite new but I’m noticing it newly and appreciating it more than ever. I realized that one of the girls’ friends really is a friend to Sarah too. Most kids are really Amy’s friends. Sarah doesn’t really play with them nor they with her. But there is one kid who seeks Sarah out! She goes to find her and hang out with her, usually with parallel play. They have an ease together. This feels like a really big and wonderful deal. How are we so lucky to have this person in our lives? Now the only piece I want is for Sarah to feel the same about the other kid and seek her out. Maybe in time. 

Yesterday we sorted through the girls’ pajama drawers. Amy decided to part with a few items. Sarah wanted to keep everything, but she really enjoyed the activity.

September 9

Quite often after I write about something then it changes. Sometimes that makes me want to avoid sharing if things are going really well, but I always share anyway, and sometimes that helps me shift out of whatever was difficult. After my last update, Sarah’s pajama obsession eased a bit. I think it was due to explaining that they would go away for good if she couldn’t handle changing out of them when it was asked of her, but maybe it was also related to the writing. 

Amy’s school was cancelled two days in a row due to the extreme heat of Tuesday and Wednesday. Meanwhile, as I write I am wearing fleece pajamas, slippers, and a bathrobe! I let Sarah stay home on Tuesday because she had a seizure on Monday night. It was similar to her others, in her sleep and lasting about a minute. She was distressed afterwards and her body didn’t work quite right, as usual post-seizure for her. Fortunately, she was able to sleep and didn’t spend hours feeling like she needed to puke. In the morning I woke her at the normal time to see if she wanted to get up and go to school. She said she had a headache and wanted to stay home. I gave her advil, and twenty minutes later she was playing and completely her usual self. I suggested that she was well enough to go to school. She instantly put her hand to her head and belly and reported that they hurt. Since Amy was already going to be home, I let Sarah stay too. On Wednesday she went to school as usual. 

Sarah’s seizures are infrequent, but this last one crossed the line for us in terms of whether or not she should be on anti-seizure meds. We decided it is time. I have the bottle here but we haven’t started quite yet. Even getting the medication from the pharmacy was way more emotional for me than I expected. I cried all the way home. This feels like a really big and disappointing deal. It feels like admitting that she has epilepsy, and it feels scary in terms of the future. I realize that it should seem scarier to not medicate, but if we aren’t medicating then somehow it isn’t that big of a problem. Maybe it’s not. But once every month or two still seems too often, especially with her distress and discomfort after they happen and having no way to know how miserable she/we will be. It is also scary each time waiting for the seizure to stop and praying that it will be short and that I won’t need to give her the emergency medication. 

My uncle sent me an article that is about how parental yelling is ineffective and is a sign of weakness. The article suggests planning ahead more so you can lay out ground rules and also celebrating hugely when your kid does the thing you want. We definitely do big celebrations, but I could probably up my game in that department too. Sometimes when things are how you want them to be it is easy to not notice them as novel. When I first read the article I wanted to yell (ahem) at the author that they didn’t know my kids or my situation or how long the days are of how often I do the planning ahead but that I can’t think of everything.  Given that I wish I didn’t yell, it was actually sort of nice to have someone telling me that it was bad, even if I fought it and resisted it defensively at the same time. As I sit with the author’s points, I find my parenting responses changing at least some of the time. At least once when I wanted to be frustrated at Sarah’s predictable upset about missing Carl, I reminded myself to come into my power instead of feeling weak and helpless. Instead of grumping at her and walking away, I sat and held her on my lap and looked in her eyes. It turned into a sweet moment. It helped that I had the time. It helped that she allowed it, because she doesn’t always. Perhaps it was because she was pretending I was Granddad. I have no idea why it is so important that it be Granddad instead of me holding her, but it is. I don’t do anything different than I do when I am me. It is sort of like drawing a desired piece of clothing on paper. It is all in the imagination.

I’m more acutely aware that the girls are growing up and that the times of them wanting to hang out with me, play with me, read with me, snuggle with me, and sleep in my bed are finite. This helps me enjoy some moments that might otherwise seem arduous or never-ending. So many people counsel parents to enjoy every minute because it goes so fast. The thing is, such counsel rarely gets that intended result on my end. Because parenting is hard!!! The hours can feel long. I am trying my best to enjoy every moment but some of them are too hard! I have to come to this realization of time passing and wanting to cherish the moments on my own, when it feels like I have breathing space to do so. 

Normally I don’t like having the girls help in the kitchen, but that has been shifting. They are more skilled and as long as I am in a relaxed frame of mind about time and mess and output, then it’s all good. One day I gave each girl a mixing bowl and told them they could make whatever they wanted. I would just help with suggestions of possible ingredients and amounts. When I was little I used to bake things without a recipe. My products were never very good, but my obliging parents tried them anyway. Amy’s cake was good. It was a bit dense and had a light sweetness. Sarah’s was fluffy but tasted too much of baking powder. Sarah’s second creation later in the week was much better and we all had two pieces. Their cakes aren’t really very sweet and we haven’t frosted them so I feel ok about treating them more like bread.

Sarah has a new love of calling people on the phone. I tell her what numbers to press and I coach her to keep the phone to her ear. She has called Mom-Mom and Grammy/Granddad. This seems so adorable and grown up.

Yesterday morning Carl and I were convinced that everyone was upstairs and that Amy was still sleeping. As we went to go downstairs we were greeted by a sneaky little Amy who had already been up, making toast with jam for everyone! Breakfast also included a side of pretzels. Her earnest enthusiasm was almost too much to bear. Later in the day she cut the center out of a paper plate and used the center paper to create cat ears to tape to the outer circle. She called her creation Moon Cat. She then made a small Moon Cat first aid kit that contained tape and crayons, in case repairs or color were needed. Sometimes Amy is just so amazingly creative and wonderful my heart hurts at the wonder of her being.

May your baking be tasty and may your heart find such delight that it almost hurts.

September 2

Stupid bleeping polka dot pajamas!!! But more on that later.

Many parts of this week were wonderful. Sarah started 4th grade. She tied her shoes by herself to get ready for the bus.

I gave two Alexander lessons that were for my own practice and were some of my best work. I arranged the details to allow me to study in England with one of the most amazing Alexander Technique teachers ever. The teacher is Bruce Fertman, whose book I mentioned in a previous update. As I finished the book I knew I must study with him again. Now it is all falling into place. I have my flight, rides, lodging, a substitute for the class that I teach, and sitters to be with the girls when needed. The AT program is for people who are already certified teachers. It is comprised of a week in October and a week in April for two years. I just squeaked in before the class was full. I am so excited!!!

Now...the pajamas. Sarah has revived her love of polka dot pajamas that I bought when I was pregnant with Amy. She likes to wear them, even though they are much too big for her. We had a wonderful play time on Thursday afternoon with her wearing them, pretending to be me, then pretending to puke on my comforter, going to the laundromat, pausing to get soap from her aunt’s house (which references a story I tell called “Soap,”) losing Knuffle Bunny in the washer (as per the book by Mo Willems), and generally being together.

The pajama problem is that she doesn’t ever want to take them off. So there have been many moments of yelling. I think I finally got through to her that if she can’t take them off easily and get dressed when we tell her to, then the pajamas will go away in the attic. To get that message through wasn’t easy. I know that I am a parent who yells but usually it feels like a small part of things. Some days this week felt like yelling was the theme. I didn’t even feel as guilty as I sometimes do. I just felt mad, sometimes at both girls, and that this sh** has to stop.

Anyway, here we are. Despite the yelling we have still had many sweet moments. Possibly because of the yelling, I think we may have easier times in the future.

This weekend we are camping. It was a struggle to get Sarah to pack and get ready (bleepin pjs!) and she doesn’t really do a quiet voice well, but the woods are beautiful. We made some campsite neighbor friends, who of course already know many people we know because this is Pittsburgh and it is a small world. We had delicious hot dogs and s’mores. We saw a toad. The air smells fresh and we will walk to the beach when the sun is high. We had homemade doughnuts for breakfast and then Amy announced it was time to wear stuffed animals on our heads. Carl promptly made a snake from a camp towel and finished his breakfast wearing the snake.

Overall, life is amazingly good. I may hate a certain pair of pajamas. I may hate Sarah’s stubbornness, but I simultaneously can appreciate her passion. I know her apple-self doesn’t fall far from my tree.