April 28

When I was away in England, Carl experimented with changing how he did things for Sarah’s school mornings. Usually I would turn on the hall lights every five minutes for 20 or 30 minutes and Sarah would scamper out to turn them off, saying she was the light bandit. Usually this was fine and she seemed to like it, but when we would switch to getting ready she would start resisting. Carl changed this light bandit pattern to snuggling with her and talking to her to help her (and himself!) wake up. They had to zoom more, but there was more cooperation. When it was my turn to do mornings again I asked her how she wanted to do it. She wanted some of both. I ended up doing a blend of some light bandit time and some snuggling. Mornings went well. She was always ready on time and there was very little to no struggle. (I swear, I feel like with these words I am dooming my upcoming week!). 

Noticing how snuggling helped, I am attempting to mentally snuggle more with the overwhelming mess of my house. I inwardly fight it so much but that either leads to mad cleaning or yelling at people, or just stepping over and around things and feeling yucky but not feeling capable of making a change. I didn’t do much cleaning of the silted-in areas, but I did work on the guest room, which has been my nemesis for ages because it is often my dumping ground when I am clearing other rooms. There is so much more to do, but I am aiming to snuggle with it first, appreciating the mess as an indication of full, abundant, creative lives. 

Sarah was a Minnow for swimming since Oct 2017. This past Monday she moved up to Turtle 1!!!!!! During Sarah’s lesson, Amy stood by the sidelines holding a paper drawing she had made of Sarah. She was shivering because she was wet from her own lesson, but she refused to miss even a moment of Sarah’s lesson in order to get dressed. She knew Sarah was on the cusp of moving up and was cheering and hoping with all of her might, as was I. I’m sure the teacher could feel our eagerness, but given that she had been close for a while, I also trust that he wouldn’t have moved her up just to satisfy our desires. It was clear that she truly is ready. She can jump in, roll over, float, and do specific motions to move through the water while floating all by herself. This is really really really really really amazing!!! I am so grateful to her first swim teacher who was so patiently, enthusiastically creative as he helped her to get in the water at all, eventually trusting him to hold her, eventually being ok tipping even slightly backward while in his arms…. and now, a few teachers and many months later…here she is! As a Turtle 1 she will start learning to swim. Minnows focus solely on how to be safe if you accidentally fall in the water. When our new little Turtle 1 was done, Amy wanted a celebration and none of my ideas were up to snuff. Luckily Carl had the idea to eat dinner quickly and then drive to Rita’s for a treat. Amy said that this day plus the day when Sarah graduated from OT were the best days of her (Amy’s!) life. She is such an amazing sister. Sarah is also thrilled to be a Turtle 1. 

My cluster headaches have been horrendous, despite all of my efforts which included cranio-sacral therapy, massage, Alexander, and more massage. I hadn’t fully understood the purpose of my various different medications so I didn’t know that increasing my verapamil (my normal daily med so I don’t get headaches) wouldn’t do anything to stop this cluster. It is just to keep the beast tamped down once it is under control. The nasal spray that was my “just in case I get a headache” was also apparently something to only use three days in a row but not more. I didn’t know this but happened to be speaking with a nurse about my situation after doing day/dose number 3. So they called in a cycle breaker med (or as I call it: a cluster buster) of prednisone. The trouble was that I had to start it in a morning, which left me feeling desperate and helpless as I went to bed Friday night. Note that cluster headaches almost always occur at night in the middle of sleeping. I got a terrible headache, the sort where my whole body is completely taut with panic, and my head hurts unbearably, and I cannot be still. I woke Carl and he gave me a two hour massage until finally the pain abated enough for me to sleep. Two hours! If he stopped for even a moment then everything was unbearable again. I am so thankful that I wasn’t alone with that. I honestly don’t know how I would have survived, because my coping mechanisms often probably make it worse, but it is impossible to think clearly and not press against my head, seeking momentary relief. Cluster headaches are rare and usually it is men who get them. So I am rare among rare. Cluster headaches are known as the suicide headache because of the intense pain and the despair that can come from the relentless repetitiveness of the headaches, especially if they become chronic (meaning every night or so forever) rather than episodic (every night or so for a month or two). Mine used to abate after 15 minutes if I was lucky and long ones would be a few hours. Now mine have decided to spice things up, lasting for a day or two, and mine are now chronic, which is why I have to be on verapamil all the time. In the early days when I didn’t know what hit me, I didn’t have meds to help but the pain was short lived and then would magically and mysteriously go away. Now I can see that without meds and extra meds and even more extra meds, I would be an absolute wreck, as would my middle-of-the-night support husband. So, thank goodness for the cluster buster and thank goodness for Carl. Last night I didn’t get a headache, but if I had then I would have again been relying solely on him to keep me from going out of my mind. I am tentatively hopeful that the prednisone is already working enough that maybe my cluster is busted. 

Earlier in the week, Amy reached something on the top shelf of the fridge, announcing as she did so that all she had to do was go into a tiny arabesque on her tiptoes. I love that! I love the way her mind works. She also had a moment of being delighted as our cat Olivia sat on her lap. Amy had to stay very still while Olivia got settled, resisting the urge to squirm because Olivia’s paws tickled her legs. This morning she fixed breakfast, with Sarah’s help. Amy told me to wait upstairs until she called me. She set the table with cat napkins as placements, plastic spoons that change color with temperature changes, yogurts, and rolls with margarine and jam. We all had cups of water too. How did my girls become such little grown-ups?!

Sarah is all about sad bears. Sc drew many wonderful sad bear pictures. Sarah drew one too. Her bear was on a bed with a pillow and there was a window with curtains. All elements of Sarah’s picture were layered on top of each other and reminded me of some works by Picasso. I have noticed that when Sarah reads books out loud to herself she is saying and enunciating more words than she used to. For several weeks now when we go to get Amy from school, Sarah walks quickly or runs. This is new and wonderful. It used to be a very slow process and now I am the one trying to keep up.  

I just read Abby Wambach’s Wolfpack and I highly recommend it. She talks about pointing to your supporters when you succeed because it is always a team effort. For all of you who have helped Sarah (and all of us!) get to now, I’m pointing at you. Thank you!! Whether you have been here in person or reading and cheering from a far, it all helps. It really does. For those of you who help me keep my mental and physical health, thank you!! All of you who are in our lives in whatever loving capacity, I see you and appreciate you and you matter. I hope that I can offer similar love, cheering, and support to you.

May you all have ardent cheerleaders, steadfast supporters, meds when you need them, and moments that tickle your mental socks off.