February 27: H.p .... H/p.... New Hip

 H.p . . . H/p . . . New Hip.

After an x-ray and meeting with my new orthopedic surgeon, it is abundantly clear that I am in need of a new right hip. In my ball and socket hip joints, what is supposed to be round has some flat areas and corners. What is supposed to have space, on the right has none. My surgery is scheduled for March 16, shortly before my 45th birthday. So I guess a new hip is my birthday present. It is hard to remember what it is actually like to walk normally. People have assured me that hip replacements are easier than knee replacements, and that I’ll be walking the day of the out-patient surgery. I have also been reminded that just because they say “you’ll be doing stairs right away” that doesn’t mean it will be easy or fun to do them! That may be a monumental task. They say that some people are back to work in two weeks if they have a desk job. I don’t know what to expect given that my job requires me to be up on my legs. I know there is no way to really know what my experience will be except to go through it. 

My mom was already planning to come out for the double birthday celebration for Amy and me. As one friend said, we could also call this a Joint Birthday! Now my mom will extend her stay to help with my initial recovery. In addition to this wonderful help, when you are preparing for hip replacement surgery and being rather out of commission for at least a couple of weeks, I highly recommend having a professional event planner as your sister-in-law. Sonia came over yesterday to meet with Carl and me for a couple of hours, talking through all of the different ways to support me and our family through my recovery. Everything from meals to meeting Sarah’s bus to helping the kids with homework will be covered. As when Sonia was my full-time Sarah-Rise helper, I feel like she is already two steps ahead of thinking about what is needed and how to support everyone. What I especially appreciate is her insistence that Carl not be the one to manage all of the cooking, cleaning, and laundry on top of his increased role as an emotional support person for the girls and me. 

Emotionally I’m all over the place. I’m impatient to have a new hip. I’m scared of the surgery and pain and recovery. I’m daunted by the list of things to organize before the surgery. I’m uncertain how much longer I should keep working before the surgery, mainly because my discomfort seems to be increasing daily. I’m relieved that help is in sight. I’m crying hard at least once a day because of how difficult all of this is in so many different ways. I feel less independent by the moment, relying on Carl’s arm or walls as I make my way around. I miss going for walks. I miss doing anything without first evaluating whether or not it is a good idea. I feel old. I wonder how this can be happening to me. This is not something that happens to me. This is for other people, thank you very much. I’m glad my doctor has done this ten thousand times. I’m worried because I successfully weaned off of my cluster headache medication a few weeks ago, before my hip fell apart. Can my head actually survive these new stresses and not begin a new cluster of headaches? 

Now, on to some other news and positive things. The kids are finishing up a Triple Birthday Extravaganza sleepover with Anna. It is to celebrate the birthdays of Sarah, Anna, and Amy since it is roughly in between all of them. Carl and I had a date night, going out to dinner and then attending a showing of Return of the Jedi with live music played by the Pittsburgh Symphony Orchestra. It was wonderful, and it was hard because of my hip. But overall I’m still glad we did it.

Sarah likes to call me Hitchie because of my hip, and she still likes being called Hedgie, the baby hedgehog. So we are Hitchie and Hedgie. She also likes to scratch my hitch or press on my hitch, meaning she presses on my thigh sort of near my hip. 

Sarah checks in with us many times daily with “I’m a good listener? I do not need a nickel chart?” While sometimes I am tired of answering, I can see that she needs the reassurance. And truthfully the answer is yes. She is a very good listener, especially lately. She is ending her technology turns easily most of the time and is being increasingly helpful around the house. Last weekend when she was Carl’s sous chef for the Hello Fresh meal they made together, she took care of the carrots from start to finish all by herself. She peeled them, chopped them, put them on a cookie sheet with oil, put them in the oven, and took them out of the over. One hundred percent by herself. 

Sarah also did a Peppa the Pig jigsaw puzzle with 24 pieces completely on her own without anyone else even in the room or coaching at all!! Until a few months ago this had seemed like a skill that would elude her possibly for her entire life. With her increased cooking prowess, her independent unloading of the dishwasher yesterday, and her new puzzle ability, I begin to see that maybe she can eventually live semi-independently. This is always what we hoped and half-way expected, but it is comforting to log more evidence of it really being possible. 

Sarah likes to be various babies with new names of babies being born often. This week Baby Getting It was born. I was confused so she clarified, “More feeling, keep trying, you are getting it!” This is a reference to a Mo-Willems book called Elephants Cannot Dance. I laughed long and loud. I love how Sarah can turn any word or concept into a baby. There are no limits.

Sarah got a musical note umbrella and she loves playing with it inside.

Last weekend we went to see an art exhibit that included some of Anna’s work. We were surprised and delighted to discover that it was also Amy’s debut in the professional art world! One of Anna’s pieces of art included a sock on which Amy had drawn a cat face and written “Beatrix.” 

Amy’s morning preparations went more smoothly this week, with her making more Mom choices instead of Dad choices. That is how Carl talks about things with her because I tend to make choices to do what is required before I do anything extra, whereas Carl and Amy often prefer to do the opposite order and sometimes get burned by it. Amy still has big feelings around homework sometimes and I can’t say that I blame her. It is tough to have to do homework in the free hour or two she has after school before some of her other activities such as swimming or Girl Scouts. Some of the homework makes me want to go to sleep or do anything else first because it is annoying or dull. I don’t want to write complete sentences to give two examples of each vocabulary word on her list! Who wants to do such a thing?! I’m glad she is the one that has to do it instead of me, but I wish she didn’t have to do it either. I know this is a small thing, but sometimes it feels like homework takes over her home life. 

Any of these struggles seems inconsequential and not even worth airing given the situation in Ukraine. My heart breaks for everyone there. I think of the kids trying to do their vocabulary and math homework where such things now may be truly impossible, but would feel like a simple heaven compared to war. I think of the people awaiting hip replacements, trying to get their family to safety as they hobble about and wonder when life can go back to the simple details of pursuing a more comfortable gait. I feel helpless, though I have donated to organizations doing what they can. Still, the Russian invasion of Ukraine is the real heartbreak of the week.

Lots of love to all of you. 

February 20: A Hitch in my Get-Along

I have a Hitch in my Get-Along. That is the unofficial diagnosis for my hip issue. Sarah finds it hilarious, and the words often morph into her telling me that I have a glitch. Yes, yes I do. I have a hitch and a glitch, and unfortunately, resting doesn’t seem to have improved things. I don’t think resting made anything worse. I think my hip is just in worse shape than it was, so what was manageable for years is no longer manageable. I limp or walk slightly awkwardly at almost all times and if I’m lucky then I don’t have too many moments of severe pain where I can’t hold my weight on my right leg. I did get a chiropractic adjustment yesterday because my top cervical vertebrae, known as the atlas because it holds up the world of the head, was quite out of alignment. That adjustment did not fix my hip, nor did I fully expect that it would. On Thursday I will meet with an orthopedic surgeon and find out if I need more scans or a shot of something or surgery of some sort. As my 45th birthday looms, contemplating a possible hip replacement really doesn’t help me feel young and spry.

My hip pain and not being able to reliably do what I usually do in life has been emotionally challenging to say the least. I feel worn out physically and emotionally. I’m enjoying my work much less than usual and tears are flowing more often too. I am reducing how many clients I see per week, but that means that when people want to schedule I’m already looking at April. 

Despite being told by the bus company that Sarah’s regular driver would be back this past Monday, he was not. The bus company was evidently the most surprised by this revelation, scrambling to come up with a substitute on Monday morning when Sarah normally would have already been picked up. After that stressful morning, the bus company did in fact supply subs in a timely-enough manner. Now we have been assured that Sarah’s regular driver will be back on Thursday. 

Getting out the door on time with Amy has also been a challenge, even though she has a flexible window of departure since she walks. Because of my hip, Carl was walking with her to the main intersection where we always want to make sure there is a crossing guard. She walks the rest of the way on her own, so could do the whole walk independently but that isn’t how we have done it so far. Anyway, Carl has a morning bus to catch so needs Amy to be ready by a certain time on the dot. This goal proved elusive, with all parties frustrated. 

Enough with grumps and frustrations…. Last Sunday we had a wonderful visit from N, one of our Sarah-Rise volunteers from the past. N. was with our Sarah-Rise program for the four main years that we did it full time. I realized recently that we met him almost 10 years ago. That boggles my mind. How can so much time have passed? And yet, of course it did. Anyway, it warmed my heart to have him here again. We reminisced about the time when he and Sarah pretended that he was a snail shopping for a new shell, while she assisted him in trying on different options. For this visit, Carl, N, and the girls played the Goodnight Moon game with much laughter and hilarity. Everyone except me attempted to sit criss-cross, some of them hamming it up to tip over. Amy turned herself into a veritable pretzel, as she so often does with her toes up by her ears. It felt so rejuvenating to have company in a way that felt so normal but has been anything but normal for the past two years. 

There has been much silliness from all parties living in this house. Amy and I donned exaggerated serious faces to tackle some of her math homework. Then she and Carl made all sorts of faces while taking selfies, and Sarah played with a paper bag on her head while helping Carl make dinner yesterday. 

I hope you are well and that if you have a hitch in your get-along you also have some serious silliness to alleviate some of the sadness.

February 13: Dragging A Bit

I’ve been awake since 5:20 thanks to our cat, but have been dragging my mental feet about writing because I don’t feel like I have anything inspired to say. And I don’t want to be draggy. But draggy is how I feel. I’ve been working more on my book this past week at that feels haaaaaard. Way too hard. I can’t possibly do it. I know those are just feelings, and I can get past them, but they are in my way at the moment. 

Last night when I got up from dinner I could tell that something was stuck to my slipper. Amy found that I was trailing a post-it with the words “beautiful writing” with which my mom had labeled a book by Brian Doyle that I just finished reading. Incidentally, Brian Doyle’s River of Song is one of the most poignant, beautiful books I have ever read. Anyway, I did find it funny that just as I am feeling so stuck with my book and not wanting to even look at it, there I was literally trailing beautiful writing. May it be true. 

My right hip, which has been intermittently not quite functional or comfortable for many years has been much much worse lately. I’m limping most of the time, whether in pain or not. Sometimes I’m in a lot of pain and can barely walk. Other times I can walk fine even if I look gimpy. My goal for this weekend was not to take steps. Most days I get 5-10 thousand steps without doing anything on purpose to get steps. I’m just taking care of life. I’m not even parking far away from my office like I used to. So I have been sitting on the couch way more than usual, starting Friday evening. Usual couch time is basically never except for maybe half an hour or an hour in the evening. But I found myself thinking that all I wanted to do with my life was be on the couch. Not even reading. Just staring at the curtains. When I do that I notice many moments of tensing muscles that could be adding to my hip discomfort, so hopefully being more aware and letting things go more often will help. But the jury is still out on that. 

On the plus side, yesterday I met with a new (to me) chiropractor and I’m absolutely in love with her approach and way of explaining things. I’m also hopeful that she can help me, but her approach is non-traditional, which means that the assessment was yesterday, the x-rays are Thursday, and my first adjustment will be on Saturday. 

We increased Sarah’s dose of her new anti-seizure med last night as planned. I can’t tell if it is helping or causing any side effects. The few times she has slept next to me I thought she whimpered more in her sleep and seemed somehow different in her startle-awake-seizure moments, but it is hard to know.

Sarah’s bus driver was out of for most of the week and she had substitute drivers. Why substitutes can’t be on time is beyond me. I can understand being ten minutes late, but not forty! On the day it was 40 minutes late I was just about to drive Sarah when I heard from the mom at the stop before ours that the bus had come. That was after I had tried to call the bus company at least ten times, always getting voicemail that led to a full mailbox. At first the other parents and I thought that we had been told the regular driver would be out for 6-8 weeks. Egad!!! Luckily, the newest information is that he will be back tomorrow. Thank goodness. It is really not a great start to the day to get all ready on time and have no idea how long you will be waiting and watching (not doing anything else you might have wanted or needed to do) and not being able to contact the company or trust what they say if you do reach them. One day they said it was ten minutes late, but it was really twenty. When you have a Sarah screaming her heart out because she so desperately wants the bus to come, it really matters how many minutes you are waiting.

Amy had a good week mixed with big feelings when some events got canceled and when math was difficult and took forever. I was pleased with how I was able to listen to all of her feelings and help with the math in ways that felt present and relaxed. The bunny puppet that had helped Sarah around our Christmas travels happened to be nearby when Amy was upset and was helpful again. It was especially funny when the bunny tried to be mad, because it just couldn’t be and was so cute that Amy and I laughed together as she moved into more equilibrium. 

Carl returned from his trip and has been supportive of my couch sitting mission. His offers to help in various ways, along with Sonia’s offers to help, point out how hard it is sometimes for me to ask for or accept help. When it was on Sarah’s behalf for Sarah-Rise then that felt way easier. It is much harder when I feel like I’m being lazy and should move my own rear. And yet, I think I need to treat my hip situation as an injury and tend to it as if I was sick. 

Yesterday Carl and Amy had a fun moment. She did his hair in pigtails which he wore for most of the day and then he gave her a ride on his back, sometimes rearing onto his “hind legs” so she had to hold on to keep her balance. ,

Anyway, I hope you are all moving easily but that if you are dragging then you are also trailing something beautiful.

February 6: From Bunnies to Band Practice

The whole week has been cold and snowy. Tuesday morning as Amy and I walked towards her school we saw what looked like a dead but intact bunny on the sidewalk near our street. We crossed the street, but as I looked back I saw the bunny move a leg. I told Amy that if it was still alive when I walked past again then I would see about taking it to a wildlife rescue center. It was still moving slightly. Luckily my sister-in-law Sonia knows things. She was able to tell me how to use flat cardboard and a box to scoop the rabbit up with minimal disturbance to it and how to transport it to the rescue center. My inclination would have been to talk to it to assure it that I meant to help, but Sonia said bunnies are quite susceptible to stress and that it would be best to not talk to it and to drive with no radio. I tend to be squeamish about such situations of dead or nearly dead animals, but I persevered and successfully delivered the rabbit to the rescue center. Unfortunately, when I checked with them later to see if the bunny lived, they said it had not. Apparently it had many internal injuries. I haven’t told Amy the end result and she hasn’t asked.

Tuesday night Sarah had a small seizure. It was bigger than one of her startle moments, but big enough that we ran in to her room. It was done by the time we got there, as is often the case. It is good her seizures continue to be small, but it would still be better not to have them at all. Carl came with me and Sarah on Wednesday to meet with Sarah’s neurologist for an appointment I made weeks ago. Normally it is just me and Sarah, but this time we knew we might be discussing changing her medication. I may never understand why such appointments take so long and why we must first talk to a nurse about everything and then go over it all again with the doctor, but such is the system. We did walk away with a plan and Sarah also got her covid booster shot. Last night I started her on a very low dose of her new medication which she will take in tandem with her other medication that she has been on for years. After we titrate up to the desired level of the new medication and wait for a few weeks to see if it helps, then we will wean her off the old medication. 

I felt anxious last night giving her the new medication. I know it is meant to help, but I get scared about adverse responses. She did have two startle moments in her sleep, but those were probably normal. In my anxious sleepy state I thought she seemed groggier in her sleeping than usual. How can one sleep more groggily? That makes no sense. So I am pretty sure all is well. 

Due to a forecast of freezing rain and snow, Amy’s school was virtual on Thursday and Friday. Sarah had two snow days. Thursday it just rained and was 36 degrees! In my day…. Anyway, it was fine. Grandpa was able to be with Sarah while I went to teach on Thursday. For Friday I cancelled my clients because the forecast seemed more legit. We did in fact have a coating of ice on everything. Sarah also seemed more tired than usual, probably because of the booster shot, so it wasn’t a bad thing for her to have two days to rest whenever she wanted.

Yesterday Sonia and her partner took the girls to band practice! Sonia’s partner is part of a band so they went to his real rehearsal space and the kids got to sing and try out the instruments. They had a wonderful time. I didn’t go along because I was able to get an appointment to donate blood so that is what I did.

Carl is away for a skiing trip. Luckily the weather here didn’t interfere with his flight out Friday morning. We miss him but know he will be back soon. Sarah asks daily if he is coming home today, but she is also happy to get to sleep next to me each night.

Some other highlights of the week include Sarah singing “Amazing Grace” to baby Sadness to help her sleep, and Amy dressing up as Lena Leopard complete with marker applied to her face to give her spots. Sarah, Amy, and I played Peppa Pig Monopoly. Our dining room is covered in glitter from Valentine production. And I found the sound piece for the Laughing Bag that Sarah so wishes we still had. I put new batteries in it and put it inside the paper Laughing Bag we made during her EEG months ago. It works! Lastly, I got a plastic push toy that looks like a duck and has webbed feet attached to the wheels and quacks as you push it. It was at the used clothing and toy store that I was near when I went to get some art supplies, so I had to go in. It was love at first quack so the duck came home with me. 

Lastly, some sadness. Today Carl and I learned that another friend of ours died unexpectedly and much too young. So our hearts are heavy. This is too many people our age gone in the last year. One would be too many, but four is unacceptable, though accept it we must. It brings mortality too close for my comfort.