July 29

Sarah! W_____! Bear! 

That is how Amy addressed Sarah one day, wanting to get her attention. When the usual attempts didn’t work Amy decided to break out Sarah’s full name. 

We have had some surprising things and some amazing things this week. Sarah stretched out in the bathtub on her back and tipped her head back to have her hair washed!!!! This is phenomenal. I attribute it fully to her swim lessons and her amazing teacher. I also had to throw in the final motivator of saying I would be a sad cat on her shirt (even though she wasn’t wearing a shirt) so I got a bit wetter than usual. Still. This could revolutionize baths going forward. Swim lessons have already helped her get in the tub more readily. This week she also practiced blowing bubbles in the water of her own volition during a play date with yard-pool-owning neighbors.

Yesterday there was huge disappointment when we arrived for our swim lesson and were informed that lightning had just struck nearby so lessons were cancelled. I had two very unhappy kiddos on my hands. Luckily when we arrived home some friends happened to have just walked by to see if we were home. As we left the pool I had promised the girls I would find something exciting to make up for the lost swim lesson. I had no idea what that would be. Friends to the rescue! (Amy just read this whole paragraph by herself with hardly any help!)

When Sarah was a baby she was tiny and for years we struggled with the diagnosis “failure to thrive” which was sometimes also followed in writing with “feeding mismanagement,” which as you may imagine goes a long way towards helping a mom feel good about herself! %&#*! Anyway, it was stressful and hard for years, probably the most stressful part of raising Sarah so far, and that is saying something. She has always been below the 1st percentile for weight for her age. In recent weeks I have realized something startling. She has a belly. She is getting a bit chunky in the midsection. Her arms and legs actually look healthy and fantastic instead of like the limbs of an awkward baby deer. However, since I had checked her weight 6 weeks ago for an appointment with the naturopath I had a data point for my wondering if she was gaining too fast. I checked her again recently and indeed she is gaining a bit too rapidly for what her body probably actually needs. She has gained about a pound a week. In the past when I was trying to outrun the need for a feeding tube (which I did by the skin of my teeth) this would have been amazing. Now it isn’t. Now I actually have to pay attention to her intake in the opposite direction from all previous years of her life. I think some of the rapid gain was due to my slipping into offering more prepackaged/pre-made items instead of homemade food. Store-bought non-dairy yogurts are high in calories and sugar and sometimes she was eating three a day. Now I will only get them occasionally (it took me 3 tries to spell occasionally correctly). I am making my own yogurt, veggie juice, cookies, chocolate bars, and various other foods again. I think I also was shoving food at both girls more during camp and travel because I was worried about them being hungry and it helped keep the peace. I think the whole family will benefit from the changes back towards homemade and whole foods. I hope that this is enough. It also seems that Sarah’s appetite has just increased. This could be because she is in the early stages of puberty or it could be a response to the increased sugar recently or that she is preparing for a growth spurt or that she doesn’t always notice when she is full. I know sometimes when I am really hungry it can take a few minutes for my body to catch up to the fact that I fed it. I think maybe this happens with Sarah or she just wants more of her favorite things. When I suggest taking a few minutes break and having some water she sometimes forgets that she said she was still hungry (after having a yogurt, fresh avocado pudding, and a s’more). Anyway, I am trying to be relaxed about this and not panic.

We had to do a stool test for the naturopath to help determine what Sarah’s body is processing from her food and what further help she may need. Stool tests are no fun. In the past they nearly always set us backward in her potty training or independent use. Even this time it has introduced a hiccup into her normal rhythm, in part because she had to be off of several things that help her digestion and elimination. She also really really really didn't want to poop in a bucket. It attaches to the toilet so in theory it should be easy, but it isn’t. I explained what we had to do and I offered many things to sweeten the deal. I started with offering extra ipad time. Then I added the offer of a brownie. When it seemed that we were in the moment to make or break things I was offering anything she wanted. I said I would make a cake for dinner. Or pizza. ANYTHING. No dice. I decided to cry. Really cry. Not fake crying because she was too upset for fake crying to be funny. I know that when I am truly upset she is very present and concerned about me. I knew that if we didn’t get the poop out then she would hold it for days and it would get bigger and more painful and all of everything would get horrible. I knew that in the future I would legitimately cry tears of frustration. So I turned on my tears, slightly real and slightly acting. She switched instantly from screaming in protest to saying, “it’s ok mom, I’ll do it.” And she did it! Right then! I am a genius! Slightly manipulative, but for a good and important cause. Now we just have to get her system back on track. Even when no bucket is involved she is holding a bit and resisting what her body is telling her. 

I’ve been having the girls clear their plates from the table more often because we have to take care that the cat doesn’t eat people food. Yesterday Amy astounded me by bringing dishes down from the Sarah-Rise room without my even remembering they were there. 

July 22

I took the girls grocery shopping because I didn’t know if I would have any time to go without them. Overall trips to stores are going pretty well but Sarah doesn’t stay with me easily. It feels tricky to navigate giving the girls more freedom. Amy is more responsible and reliable. I know she is aware of where I am and can find me if I am nearby. I know Amy won’t leave the store without me. Sarah walks away to follow her interest and I don’t know if she would come back to find me if she needed me. I don’t trust her to stay in a store. Luckily, she likes to do things repetitively so often she wants to go in and out of area rather than fully leaving. Still, it feels extremely frustrating to tell Sarah to stay with me and then have her wander off. Over and over and over again. Given that we have been in stores that are mostly empty and that she doesn’t go too far (but does go out of my sight) this is ok and I feel that she is safe. But. It is the principle of the thing. If I tell the girls to stay with me then I want them to stay with me. I don’t want to have to remind them 100 times. Amy does stay with me. Sarah doesn’t. At the grocery store we did have an extraordinary moment. I realized I had forgotten something and wanted to zoom back a couple aisles to get it. It felt like pulling teeth to get Sarah to come back with me so I asked Amy to just keep an eye on her. When I came back one minute later I found Amy leading Sarah in stretching exercises. That was so brilliant and creative! I don’t know if Amy was thinking about a way to keep Sarah occupied and in one place or if she just wanted to play in the empty aisle. Either way, I’ll take it! 

A week ago Sarah had her annual audiology appointment. We have known that her hearing in her left ear hasn’t been perfect for years and that her right ear hearing has been almost perfect. The right has a tiny hearing loss and the left has significant loss. I didn’t fully understand this when the audiologist explained it. I did understand it when the ENT we saw this week went over the results again. The audiology test also suggested that Sarah has fluid or wax that isn’t draining. Given that and Sarah’s repeat ear infections earlier in the year, in late September she will get tubes put in her ears. After that we will do another audiology test. If there isn’t any improvement then we can consider a hearing aid if we want. We don’t absolutely need to because her right ear is functioning so well, but with my current frustrations due to Sarah’s unresponsiveness I am leaning in that direction. I can’t tell how much of her ignoring me is on purpose and how much is that she doesn’t hear as well as she could. 

Amy did float-swimming on her back independently! She did it so smoothly that I didn’t realize the instructor wasn’t holding her head. Sarah asked to float by herself and did so for about 1/4 of a second. The main challenge with Sarah’s swim lessons at the moment is to get her not to drink the water when she dips her face in the pool. She spits it out, but so far we haven’t been able to get her to keep her lips fully closed. 

Sometimes I am tired of small people needing things from me. I am tired of small people fighting and yelling and whining. I am tired of Sarah being a budgy nudgy older sister antagonizing Amy simply for the sake of doing it. From people who grew up with siblings I understand this is par for the course, but oh my goodness! I am so tired of it. I am tired of Sarah’s whining and screaming and anger when I tell her no about something (and end up yelling at her because she doesn’t listen to the first 5 or 10 times of my saying something nicely/calmly, so then we are both yelling and mad and I am feeling like a bad mom and like I just want to be done momming). Then I feel bad for feeling tired of it all when I have had sitters for some part of almost every day this week. Thank goodness for sitters is all I can say! (Carl has had a lot of work travel lately and is away at the moment.) 

On the plus side, last night I had a salad with my dinner and Sarah asked for some! She ate a baby spinach leaf! I cheered mightily. Amy then asked for one and took a small bite, for which I also cheered mightily. The girls have also been sweet, helpful, creative, silly, and snuggly on many occasions, both piling onto me to give me love, which fills my heart and makes up for the hard times. 

Amy and I have been cruising through the Ramona books that we have. I am really loving reading chapter books out loud. The Ramona books are so good.

Lots of love to all of you. May the sweet moments balance the challenging ones.

July 16

Last night when I was talking to our babysitter I realized that something changed and I didn’t even really notice when it changed. Sarah used to get up almost every night and ask for water. She might get out of bed to get our attention but then she would refuse to get a drink for herself and wanted us to bring her one in bed. We always did because our main aim was that she go back to sleep. Now we often hear her get up and get herself a drink and then get back in bed.

Swimming again went well. It is wonderful to have this be the refrain every week. It is amazing to see progress every single week. Sarah now does an assisted float while the instructor just holds her head. Last week when she did this her body was still rather tightly flexed in all areas. This week she was more relaxed with her limbs spread out. 

I am realizing that the end is in sight for how much longer I will carry either child anywhere. It is just getting hard. They are bigger and heavier and so it isn’t as enjoyable to carry them. They are also more capable of walking farther. Still, this feels momentous. I know this is how it goes with kids growing up and with Sarah there has been so much heartbreak over her not being more grown-up than she is. Still, I am a bit sad anyway.

Amy started running in slow motion. It is hilarious.

Last night Carl and I went out to celebrate our 15 year anniversary. When Amy saw what I was wearing she quickly dressed to look the same.  Later, Sarah told the sitter that her Uber was here and she was going on a date. That is so sweet and adorable it fills my heart. (Sarah has also said she wants to be a cat when she is older…. so she can play in the litterbox.)

Yesterday we went out as a family to the frozen yogurt place. It is still new enough to be exciting every time that we do something so normal, something so many families get to take for granted. We also took the girls to get hot dogs and fries because we stayed out too long at the Squirrel Hill Happening (possibly the smallest street fair in the world) and we had hangry kids. 

 Anyway, I hope you aren’t hangry and that you have some joy that fills your heart.

July 8

We were away for most of the week visiting both sets of my parents. Overall the trip went wonderfully, but was not without challenges. I realized that the last time we made this trip we would use the family bathrooms when we stopped at rest stops. Now the girls are independent enough that they just came with me into the women’s room and I didn’t think anything of it. There was a lot of screaming and resistance to leaving rest stops at first but for the ride home we made it clear that to play with doors at the next rest stop they had to leave easily from the current rest stop. That worked beautifully.

We were at a hotel for some of the time and these grown up little girls rode the elevator by themselves and let themselves into our room using the key! We were of course only a minute behind them but still!

Due to weeks of being out and about or at camp for much of the day and thus not using her special soap, Sarah’s hands were in really rough shape due to her dyshidrotic eczema. I started carrying a bar of her Vanicream soap in a travel soap dish in a ziploc bag everywhere. Her hands aren’t fully recovered but they are much better.

Sarah has started wearing a ring again. When she was in her first preschool she wore a ring that belonged to her great great grandmother. When it accidentally fell down the sink, Carl opened up the pipes to find it. Now Sarah has grown into a larger ring that has no family connection, but we have still had ring adventures. A couple of weeks ago she took it off and put it away in her room. Miraculously, I found it in her sock drawer in the dark at 2:30am, the time at which she felt it was imperative to be wearing it again. On our trip she lost it while we were driving. We knew it was somewhere in the car. Again, miraculously, I found it balanced on the rails that move the front seat backwards and forwards.

Both girls are now in booster seats with backs. This means they can unbuckle themselves. Amy can also buckle her seatbelt without help. Sarah isn’t able to quite yet. Still, it makes getting in and out of the car feel faster and easier.

There were a couple of moments when Sarah was screaming for dog music, which is what she calls her favorite album of Disney music that has a picture of Pluto. In the midst of her screaming she started laughing.

We have discovered that we can go to frozen yogurt places and Sarah can actually have something! They seem to all have a vegan option. This is one of those small but big things.

Last night I was about to give Sarah a new supplement recommended by her naturopath. Luckily I read the ingredients first. Months ago I gave her something that had a dairy product derivative in it that the naturopath said she would probably be ok with. Nope. Hives for weeks. This time I keep feeling relieved in hindsight that I caught the ingredient of black walnut powder before giving it to her. ACK! That would have probably meant using the epi-pen and heading to the ER. Doctors are only human and it is a good reminder that I am the last line of defense for Sarah in such a situation. I also feel a bit grumpy that this is twice that the supplement recommended has not been a good idea at all. 

Swimming yesterday was again amazing. Sarah let the teacher hold her head while she floated, instead of leaning her head on his shoulder. AMAZING. Amy did 3 or 5 new things, depending on how you count, and felt like it was too hard to be in her new level. I hope next week feels easier for her.

Yesterday felt like my first real full summer day with the girls. We had a lazy morning at home. I read a Ramona book to Amy. We went to a carousel and rode it about 10 or 15 times. We went home and relaxed. We got frozen yogurt. We went to their swim lesson. We had plenty of time and didn’t rush for anything. It was a beautiful day.

July 1

Last weekend we went on two outings that involved things the girls loved so much (playing in cars, getting food from food trucks, biking) that then there was screaming or whining or not cooperating or all of the above when it was time to leave. Just today we started reminding Sarah more often at each transition that "now is a time to practice leaving easily."  Some of the time it has worked. 

Carl discovered a company that can print a picture onto pants and he was able to make Sarah's snail pant dream come true. Sarah knew of the possibility and by her own admission she is no good at waiting. So the week prior to yesterday involved lots of impatient whining and screaming. There was one night when I heard noise at the front door at 4:45am. I went down and found Sarah. She had been peeking through the mail slot to see if the package had arrived. We told her it might take two weeks and we didn't tell her when we found out they were coming Friday. We thought a signature might be needed so I arranged for Sc to be at our house for half of Friday while I was out. She was then able to wash the pants before Sarah got home from camp. Sarah is now a very happy camper with her beloved snail pants. Yes, we did get two pairs.

Amy moved up to the next level of swimming! She is able to float independently for ten seconds! She will be kept in the same class time as Sarah, which was my sincere hope. Sarah again was horizontal with the back of her head touching the water, while she was fully supported by the teacher. And she was smiling! Have I mentioned how much I love their teacher?! A serious miracle worker. 

Olivia, a sweet black cat with yellow eyes, has joined our family. She has moved into all of our hearts and Sarah does seem ok in terms of her allergies. Only time will truly tell so our fingers are crossed. 

The girls finished their camps and we were all pleased with both experiences. It was harder than I anticipated to deal with all of the transportation and how much time that took. I think next year I will minimize how many things we have scheduled in the afternoons following camp. Our days were so packed that I felt like I was barely keeping up with what I wanted or needed to do. So it was good and I intend to sign them up again next summer but I am glad it was only two weeks and I'm glad we are done.