May 27

The past couple of days have felt difficult, which is interesting as I look at the earlier part of the week which felt full of exciting things. The exciting things…

There was one morning when Sarah took off her pajamas without being told to. She proceeded to get ready for school easily with no difficulty or protest at all.  

There was one night when Sarah read Olivia the Spy by Ian Falconer out loud by herself, having never seen it before. She said most of the words clearly enough that I understood them, which is rarely the case when reading out loud. Side note: All Olivia books by Ian Falconer are artistic, wonderful books of genius. Olivia books written by others are just ok. 

I received a note from one of the people who has seen Sarah at her school periodically since she began her time there 2 years ago: 

"Just wanted to share some thoughts/observations on Sarah - I was there all day yesterday, and it suddenly struck me - how FAR she has come recently! Her
mannerisms, her attention to task, her general demeanor... Just this year, these past few months, she has progressed dramatically! Sarah is calmer. Interrupts less. Seems not at all stressed. Follows directions MUCH better. Seems more “mature,” ... in her actions, words, responses, manner. She seems to stand up straighter! Taller! more confident!! She is stimming less! She is giving eye contact, and responding to questions more appropriately! The way she walks across the room seems more stable, sturdy, assured! She seems so much more aware of her surroundings!!!!!!” - L.G.

Part of me thinks I should end the update here, but you know that’s not how I do things. Friday was rough! Sarah was extra screamy in the morning about things she hasn’t been screamy about in ages. Thursday night she fell out of my bed (very unusual but the second time this week) and bumped her nose somehow so that she had pink marks on the bridge of her nose and had a slight bloody nose. I don’t know if this predisposed her to have a harder time Friday morning or not. Friday afternoon she also had an extremely difficult screamy time because she couldn’t find her plaid shorts that she had put in the wrong drawer the night before. I hadn’t been with her the previous night at bedtime so I had no idea where they were. Looking for things has never been her forte. When G. arrived for his SR time with her she was a screaming ball of upsetness. I was trying not to cry or scream. I did find them and the rest of the day was ok. 

We are now in this long holiday weekend, just the girls and me. I thought an outing to Target for new undies and flip-flops would be relatively easy. It was, except for Amy’s upset about how hard it was to choose which things to get and that they didn’t have flip-flops she liked so we need to keep searching. I’ve been really struggling in general with how to allow Amy to have her feelings and not punish her for being upset, but also how to somehow teach her to be more appreciative of what she has received. After Target, we went to gymnastics. For the past several weeks this has been Carl’s realm. As helpers, we aren’t even really needed. I felt more useless than usual. That was ok. There was a moment in the beginning when Sarah went to the bathroom. As she walked back toward the big group doing the warm-up she said, “I’m back.” But she was too far away for anyone to hear. Maybe she didn’t expect a response. Maybe she didn’t notice that there wasn’t one. Maybe it was all fine. But in that moment of watching her earnestness my heart just broke.

The rest of the day was ok, but I was just so tired. I have been feeling so tired for a few days. And more emotionally struggly. Whatever magical time I inhabited for a few weeks of keeping my house clean feels like a distant memory of something I will never again achieve. I know it is because my period is coming. It can feel like a storm brewing and I’m just wanting the storm to break so my barometric pressure can return to normal.  

Now to end with another wonderful thing…I love our neighborhood. I love the neighborhood group of kids and how well they all play together. I love that they often seek to include Sarah. I love that they all know Sarah and who she is and how she is and that that is ok. This is also a testament to the wonderful parents/grandparents of all of these children. I just feel so lucky about where we live. Part of what helped us get through a lot of yesterday easily was that one of Amy's friends from the neighborhood came over. Having someone for Amy to play with often means that she and Sarah fight less. It is a new thing for Amy to be allowed to just go out and cross the alley by herself. The rules for Sarah are more restrictive. What impressed me immensely yesterday was that Amy and her friend were playing in the alley when Sarah came to find me to ask if she could join them. I still want to supervise Sarah when she is in the alley so I went out too. They started running races. Sarah usually started running when the others were half-way done, but still. I love that Sarah wanted to be part of it. 

A friend recently reminded me to just do today. I don’t need to do anything else. So, here’s to today.

May 20

Sarah tied her shoe by herself!! This is all thanks to her OT. They have been working on it for a long time. At the end of her session on Wednesday, Sarah put on her shoe and tied it so I could watch. I love how many things move from laughably impossible to totally achievable.

Sarah’s school program participated in some Special Olympics. Grandpa was able to be there the whole time and I was there for most of her events. The one I didn’t see in person is also possibly the best. For those of you that know the Elephant and Piggie book Watch Me Throw The Ball, Sarah’s jump reminds me of Piggie throwing the ball “all the way around the world” when really it went backwards a landed about a foot away. Sarah’s long jump took solid preparation and she cleared about three inches. So earnest. So hilarious. I have realized that we need to teach Sarah to throw overhand and to jump to cover a distance.

Amy’s school concert was on Thursday. As usual, the way to have Sarah sit quietly was to let her play with her phone the whole time. The amazing thing was that she stopped of her own volition when the third grade began their part of the show. (Amy’s first grade performance did not entice Sarah away from her electronics.) This may be because it included people doing some gymnastics on mats. Sarah mainly sat on Carl’s lap and wanted to talk to him, but she also watched the stage for many short intervals. This is really amazing and significant.

Carl and I are currently enjoying a weekend away, centered around a family wedding. The wedding was beautiful and getting so much time together is lovely. A huge thank you goes out to Carl’s family members and our SR team member and sitter Sc for making this possible. I was worried about Sarah being upset if I came home after work Friday morning to grab my suitcase and go, so I just took my suitcase to work and went directly to get the rental car. I needn’t have worried. The only tears that morning were from Sarah’s impatience for Grandpa and Grandma to arrive. As soon as they did, Sarah came up to me and said, “Bye, Mom.”

Lastly, my parents brought a necklace for me that I wore to the wedding. This is not just any necklace. It is a delicate little locket inscribed with my paternal grandmother’s initials. There are pictures of her wearing it when she was three! Inside are two tiny pictures, one of her mom and one of her older sister and dad. Her dad died when she was quite young, possibly 2.  It feels incredibly poignant and special to have this locket that connects me to my grandmother and her family. 

May 13

I recently took a Reiki 1 class and it was transformative. It helped me see that I want to prioritize taking care of my inner landscape the same way I’ve been aiming to stay on top of cleaning my house. When I feel my irritation tighten my chest, I want to pause to center myself the same way I might pause to pick up a dirty sock from the floor. I want to take time every day to invite a feeling of calm into my being. I’ve been imagining scenarios in which I get tight and then letting go of the tension. This has been helping when the real moments occur. These are not new ideas but this is the moment and the angle that worked to get them into my being. The Reiki class and self-Reiki practice helped me reconnect to sitting in silence as I did in Quaker Meeting when I was younger. It helped me realize that I could bring into my life more often the calm space I feel when I do massage. On purpose. It matters. It counts. It helps. It has only been a few days but I feel the difference in how I am with Sarah. I had been struggling off and on for a while with feeling like I just grumped at her all the time. I judged her, was annoyed with her, was irritated by her questions, etc. I felt like a Son-Rise failure but I just couldn’t find my way back to it without it feeling forced. Suddenly it isn’t forcing. I am feeling such love for Sarah. I am delighted to greet her when she comes home (instead of dreading it). I am enjoying being with her in a way that I haven’t felt in a long time. 

When Sarah was younger and her challenges were first apparent, I really really really really wanted a miracle from God to just fix her. I knew such things sometimes happened and I really really really wanted it for us. My mom suggested that sometimes healing isn’t what we think it will be, and that maybe healing could look like my heart not being so hurt about Sarah’s situation rather than her situation necessarily changing. Sarah’s situation has changed from the early days when I didn’t know if she would crawl or eat or walk or talk. My heart has also healed and filled so much. There is still heart break sometimes, but for the first time in a while I feel rejuvenated with hope and love and space for Sarah in all of her Sarah-ness. The extra beauty of this whole picture at the moment is that I decided to pursue Reiki at this time because I wanted to be able to help someone else who is dear to me who dealt with some major struggles recently. Sometimes struggles can bring some really amazing blessings, even if we hate that perspective and kick and scream our way into the blessings.

This week Sarah’s school participated in the St. Anthony Inclusive Games. It was wonderful to see so many people of varying challenges and abilities together. Each person who has a challenge has a non-challenged buddy and everyone was just hanging out so easily. The cheering was so loud and real. The teachers are all amazingly caring. It was the first time that I thought, “Oh. This is normal. Having a child with a challenge is normal. Having a challenge or disability is actually normal. Society and some past history may make us forget that it is normal. But really it is a part of life that has always been there and always will be there. People are just different in so many ways.”

I think a lot of my shift in perspective also comes back to that little moment of deciding to keep the kitchen clean. Truth be told, there are some days that are so full that I don’t keep it clean. But that is always the place to begin. That is the means whereby I get to my bigger goal. Cleaning my kitchen and sitting quietly for a moment with Reiki for myself, those are the means whereby. I don’t have to worry about the bigger picture. Those are the single steps that help me get to where I want to be. I’ve had many moments where I struggled and barely held on to these single steps. Yesterday I felt like the whole thing went belly up. I was blah, down in the dumps, doubting, and criticizing many of my actions during the week, and feeling like I should delete all of the update about good things because clearly I knew nothing. I emailed my mom about this feeling. She called within minutes and it felt like a sports match between her and my “yes, but” gremlins. My gremlins scored a few points but they were no match for my mom. I was no longer in the dumps. Whenever I feel like I’ve had an epiphany then I think things will feel easier from then on, as if my work is done, even if the epiphany is about the work that needs to happen, and then I can be so disappointed when things are hard. This morning I am aiming to fully internalize the words I have written here so that I can remember to keep picking my dirty tensions from the floor. One sock at a time.

On this Mother’s Day, I want to acknowledge the enormous team that is part of my mothering. Without them I would not at all be the mother I am and my kids wouldn’t get all of the love and creativity and nurturing that they get. There are so many people in this team, from Carl to our families to our SR team to our sitters to our friends to the girls’ teachers in all venues to Sarah’s therapists to my therapists to my mom. An extra shout out to my mom who cheers for me daily and always wants to know all of how I am doing and being. Even when we are separated by so many miles I can still feel her come running when I am in distress, just as I run to scoop up my girls if they are hurt. I am so grateful to all of you who support us in this beautiful life.

May 6

This was a rough week for Sarah’s face. On Monday (after she and Amy were fighting over who got the elephant watering can), Sarah tripped and bumped her tooth on the sidewalk, resulting in a chipped front grown-up tooth. Tomorrow she goes to the dentist to see if it is fixable. I really hope it is. The concern is that the amount that chipped is so small that a fix might not hold. I know there are bigger, more involved options, but I don’t know that we want anything involving major dental work. It is small, but I feel like Sarah’s life will be challenging enough and people will make enough assumptions in varying ways, so I really want her outer look to be as good as it can be because I know that makes a difference (even if it shouldn’t).

On Friday, for the second time ever, I had to end a massage in the middle so I could go get Sarah from school. She hit her nose on the toilet (no one knows how) and had quite a bloody nose for a while. She was crying a lot, but seemed ok once we were in the car. A couple of hours later she was swollen enough that I called the doctor and they said they wanted to see her. When she told the doctor what happened she got sad and teary again. Luckily, her nose isn’t broken. Since then she has been totally fine aside from the swelling (and, yes, she has put ice on it). It is almost back to normal now.

Yesterday, Amy and Carl ran the Kids of Steel 1 mile race. Sarah and I successfully navigated dropping them off, parking, and walking to the course. We are now inspired to consider running as a family in another kids’ race. I think 1 mile is a good goal for me. 

Earlier in the week the girls were playing upstairs by running down the hall and sliding for the last couple of feet. Amy went away to do something else and Sarah went to her, asking her “Amy will you come slide with me?” This is one of those simple, “normal” moments that is actually significantly amazing. Sarah may often articulate that she wants Amy to play with her, in a “I want to do (blank) with Amy” way, so it is a big deal that she went to find Amy and asked her so clearly, cleanly, and directly to play. 

Last night I made an obstacle course around the circular path that goes through our rooms downstairs. This is part of my new goal of getting Sarah to be more physically active. It was amazing to see how flexibly Sarah followed Amy’s suggestions for variations on how to move through the course, such as going sideways or backwards on some of the balance beams. After many laps, we had pizza and watched “The Secret Life of Pets.” Sarah watched more and laughed more than she has with most movies. When it was bedtime we set up the sofa bed and let the girls sleep downstairs. Miraculously, we have now had two nights in a row where the girls stayed in their own beds all night long. 

As I have been writing, Sarah got the soy milk out of the fridge and used a stool to reach some plastic cups. She then delivered soy milk to each person’s place at the table. Wow.

Carl and I went to a Josh Ritter concert on Friday. We felt like extreme groupies because we arrived before the doors opened and had to stand in the rain. We didn’t mean to be so early! But we do love his music and will see him whenever he comes to Pittsburgh. For some songs, especially his last finale, my face hurt from smiling and yet I couldn’t stop smiling. I wonder if that is how Josh’s face feels after each concert he gives. His joy and delight radiate, and he seems to be having the most fun of anyone in the whole room. I love the different ways in which people make the world a better place. 

Thank you all for making my world a better place.