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Yearly Archives: 2019

She Cries

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Mom has been here for two weeks now. She’s both better and worse than I’d pictured in my mind.  She has days of confusion – when she tries to put soap in her mouth or dry  her face with a wet washcloth. She has a lot more words than she lets on, but it seems she can only produce them when you say them to her, or give her a common phrase. She hums along to music all the time. She understands everything you say to her or ask of her.  We’ve gotten her out of the house a few times for a doctor’s appointment, getting our nails done, and to see my daughter’s dance studio perform the Nutcracker.

We had evaluation appointments with speech therapy, physical therapy, and occupational therapy last week. All three start this week, with two appointments each. She’s going to be busy! She is a determined and cooperative patient. It serves her well to be the fighter I’ve always known her to be. We are keeping expectations low – she is six months post-stroke, and most of whatever she’s going to recover has been recovered. Speech said she could make continued improvements as long as twelve months post, but not the big leaps we’ve seen since that first week. She will likely be in a wheelchair the remainder of her life, and need assistance the rest of her life. Her speech will be garbled at best.

She has had a couple of rough nights, crying when I’m getting her ready for and in bed. I get it. I can’t begin to imagine how this feels for her – to go from completely independent to completely dependent, to lose her speech, her ability to communicate, control of her right side. She can no longer do the sewing and crafts she used to do, nor can she garden like she did in the past, nor cook or bake. And this is now her life, for the rest of her life.

It breaks my heart when she cries, but I get it. Trust me – I frequently cry too. As much as she may have driven me crazy at times before, it’s gut wrenching to see your parent this way, to have to take care of her this way. She is on antidepressants, which I understand is common for stroke patients. Her doctor talked about weaning her off of them, but after the last two weeks, I don’t think she’s anywhere close to beginning that process. Sigh…And so we go, just riding out each day,  continuing to fight for whatever recovery she can gain. And when she cries, I wipe the tears, tell her it’s going to be okay, and that I love her.

Held Captive

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We’ve had my mom with us for a week now. We still have things to learn, transitions to make. And it is a LOT of physical work on my part. We’ve had ourselves a couple of adventurous days. It strongly reminds me of having a toddler in the house – I feel a strong push to get things done in the windows between her waking, eating, going to the bathroom, napping, and going to bed. Her needs are constantly in the back of my mind.

Her stroke happened in the speech and language portion of her brain. She’s worked hard, and continues to see a speech therapist, but she really doesn’t have a lot of words. She can communicate most of her needs and wants, and has an app on her iPad as well as laminated sheets with pictures to help her. Even with all of that, there is a lot of guessing and charades going on.

When we’re struggling to figure out what she’s saying, I can see her frustration building. I cannot imagine what might be going on inside her brain. I can’t begin to imagine how difficult this is for her. She’s reliant on us for pretty much everything – dressing, bathroom, bathing, moving around, getting meals. She lived alone for so long, completely independant. She will never be able to do that again. She is held captive by the brain and the body that was damaged by stroke.

I want so much for her to keep getting better, but as we’ve been told, where she is now, six months post-stroke, is essentially where she’s going to be. There is some small chance of further improvements, but nothing big.

She has cried a few times in the last week, generally as I’m telling her, “It’s okay, Mom. We can do this, Mom. It’s fine Mom.”  It’s humbling to have to rely on others to do so much for you, to have your daughters handle all your body parts because it must be done, to know you will never again be what you were before.

From this perspective, I grieve, but I am also thankful we have the ability to take care of her. That may not always be the case, but for now, we can and we do. But I grieve the loss of the roles we had before the stroke. I grieve the loss of her independence.   I grieve the loss of her ability to communicate. I grieve what she has, and continues to endure, especially as there is no hope she will ever recover enough to be independent. She is held captive by her own body, and there isn’t a damn thing I can do about it except care for her.

Losses

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This year has been a year of losses of one kind or another. Each of them different, but incredibly impactful.  I’m struggling mightily with all of them.

My mom arrived yesterday, for a 3-month stay.  As I’ve written before, my sister and I are trying to share care of her, as opposed to assisted living. I picked her, and a car-full of her stuff, halfway between here and my sister’s house. I look at the three months ahead, and I’m overwhelmed.   She’s a lot better than she could be, but it’s still a lot of physical work to take care of her. We know she will never again live independently. That’s patently obvious.

I never, before her stroke, would have imagined myself saying I missed talking with my mom, but I miss just talking with her. Her stroke occurred in the speech and language portion of her brain. She has some words, but mostly communicates by nodding and shaking her head, and charades. She also has some cards with pictures and words on it. I have to say, she’s pretty amazing at getting her needs across, but I can’t just have a conversation with her. Those days are gone, likely forever. I can’t ask her advice. I don’t what’s really going on in her head. I have no idea how she feels about what’s happened to her, nor what she has to go through every day just to do basic living.

Spouse and I spent this past weekend with my Dad and Mom L. It was her birthday last Thursday, so we went for a long weekend of celebrating. Dad is 87. He’s on palliative hospice. We did get him out to dinner and in the casino for a bit Thursday night, but Friday, he was exhausted. We went to Top Golf Saturday for lunch and fun, but he was toast the rest of the day.  He wasn’t able to go out to dinner with everyone Saturday night. Mom got a new car, but Daddy can only drive it in the neighborhood.  Gone is the vibrant, vivacious, golfing, independent daddy I’ve known.  Bless – he’s still here, and I’m incredibly grateful for every minute with him. It’s just so difficult to see how much his life has slowed down.

The biggest lost will happen within the next few months. Last week, we found out my godmother has an aggressive form of brain cancer. Those bad words I was saying after my mom’s neurology appointment? Yeah, that. My godmother half raised me, my brother and my baby sister. She was our daycare provider from the time my brother was two, until I was ten, but she was way more than that in our lives. She took us to church and VBS. She stayed with us when our parents went on vacation.  She took us to movies, on the train to the San Francisco Zoo, and the local amusement parks. She taught me to read, taking us to the library on a weekly basis. We napped in her middle bedroom. We played in her side yard. We ate, colored, and crafted at  her dining room table. So much of my childhood memories are wrapped up with her in the middle.  She’s continued to be a part of my life, and my children’s lives. I can’t picture her not being here. Can’t picture life without her in it. I’m just stunned and gutted. She was just here in May for Big Man’s graduation. I’d just spoken with her a few weeks ago. This woman who has been so much to so many people….I just can’t even.

I suppose as we get older, the losses do tend to pile up. Different types of losses leaving different types of holes.

Tenth

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On Sunday, I ran my tenth half-marathon race. It wasn’t my best, but it wasn’t my worst either. I’ve been pretty distracted throughout this training cycle, but overall, I’d say it was a great training cycle. Everything was feeling pretty good, as long as I was consistent with stretching, foam rolling, taking ibuprofen, and using KT tape.  My long runs were right in the pocket for training pace. My short runs the last couple of weeks before tapering were exactly what I wanted. All signs were pointing to a great race.

I still couldn’t believe, even as I woke up and went through my pre-race routine, that I was going to be running thirteen miles that morning. I’ve felt like that for much of the last week leading up to race morning. But we drove down to Coronado, parked, took the shuttle bus to the start, made one final bathroom stop, and made our way to the start line. This race, the Silver Strand, is mostly a straight shot from Coronado, CA to Imperial Beach, with some loops through a couple of parking lots and beach-front bike paths from miles 5-8. It was a perfect running morning – hovering at 60 degrees, and overcast. The anthem was sung, the skaters headed off, and ten minutes later, the runners crossed the start line.

I was feeling good. The course wasn’t crowded like a typical start – we had the entire road for maybe 1200 runners, and I started mid-pack (no corrals for this race). I initially tried to keep pace with my running buddy, but she’s a machine, and she was on a mission. I knew I couldn’t keep her pace for 13 miles. I definitely was running faster than I had, even on short runs. At mile four, I started to pull back on pace, but it was too late. And I didn’t hydrate as well as I should have the first six miles. The u-turns on the bike path killed me. For the record, I  hate running on bike paths. Narrow turns make me grrrrr.

I got to mile 9, and I knew I was in for a fight. From miles 7-9, I’d gone from planning to match my PR, to matching my last race, to just not being as slow as the race before that. And I fought…there was some walking, and stopping at every water station. I knew I would finish, but I didn’t know how it would look. The 2:15 pacers passed me – they were at least three minutes ahead of that pace – and I grew frustrated, but kept plugging. I alternated between walking and running, mostly running, but definitely a minute off my planned pace. I reached mile 12, walking for a couple tenths, turned a corner and saw the finish line a few blocks ahead. I have this thing about people passing me in the last half mile, and I have a thing about running that last half mile, so as fatigued as I was, I pushed on, crossing the line at 2:21. I was 13 minutes off my PR, but also 13 minutes ahead of my worst time.

I was disappointed, but not destroyed. I’d still run 13 miles, with maybe 2/3rds a mile total of walking. I got the same medal as everyone else. I’d fought for and accomplished something not everyone does. I’d pushed my body. That’s a win. I finished ahead of more than half the women in my age group. I’d finished just behind half of all the women in the race, and maybe 100 people behind half of all those running the half.

Looking back, I know I generally hit that wall between miles 8 and 10. Something I’ll need to work on. One thing I love about racing is that you just don’t know until you’re in it how it’s going to go, no matter how good or bad your training cycle.  I know I have things to focus on the next training cycle, but overall, I’m pretty pleased. And hey, ten half marathons!

F&cK*#) H*ll!!!

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First of all, the IEP meeting went pretty well. I’ll have to get to that post another day though. Second of all, I apologize – kind of – for the inferred foul language title.

It’s been six months nearly to the day since my mom’s stroke.  She was released from the skilled nursing facility 2.5 months ago, and has been in my sister’s home since, under her care, and receiving PT, speech therapy, and weekly visits with an RN.  Mom had a follow-up appointment with her neurologist today. We’ve kind of held off making too many decisions until this appointment.

I conferenced in to the appointment since my sister couldn’t be there either. After the examination, the doctor asked if we had any questions. The biggest thing that’s been on our minds, and what we’ve been waiting for to make some of the bigger decisions, is what her prognosis might be. She has been making incremental progress with the therapies, and she definitely is a fighter. I have zero experience with strokes. But the doctor definitely took the rug out from under us when he said, six months out, where she is now is likely where she’s going to be for the rest of her life. F&cK*#) H*ll!!!!!!!!

Mom is not walking. She’s wheelchair bound. She cannot cook, clean, nor handle self-care of showering, etc on her own. She can’t drive. She can’t talk more than a few words she’s worked hard to gain in the last few months. She cannot live independently. F&cK*#) H*ll!!! The doctor said she may have some small improvements, but this is basically it.

I don’t know what to do with this. I guess I thought she would just keep improving, little by little. We’ve currently planned to co-care for my mom, with her spending three months at a time here, and three months at a time with my sister. I don’t know how this works. I don’t know what people do when this happens to their parents. I don’t know what to do.

F&cK*#) H*ll – I’m overwhelmed. I’m incredibly sad. I’m incredibly stressed. I don’t know all that’s going on in my mom’s mind, but I can just imagine this is hardest on her. She has always been so damned independent. She’s lived alone for 30 years. Whatever needed to be done around the house or in the yard she just did. Now she has to rely on her family to dress her, bath her, help her on and off the commode…she has to rely on us for everything. And for how long? I’m sad for her. I’m heartbroken for her. I’m beyond stressed for us.

I just never imagined this would be part of our lives. It never entered my mind we’d be dealing with anything at all like this. I guess right now I’m just feeling sad for all of us, and completely beyond my life skillset. F&cK*#) H*ll!

Transitions, and IEP meetings

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I’ve been thinking a lot about transitions lately, as we’ve entered a new phase of parenting with 2/3’rds of our Herd. We are definitely in a different place than we were even just a couple of years ago. It really hit me the other day when the Princess’ contemporary dance instructor said we looked like two besties hanging out, and the Princess labeled me “one of her best friends.”

I’ve always pushed back on being friends with your kids. We’re here to parent, to guide, to help grow into successful, non-entitled, well-adjusted, productive adults. I’m not going to be besties with my seven-year-old. But Big Man and P are adults.  It’s different now. We can develop friendships with them. It’s actually pretty fun, especially when you realize your adult kids are cool people you can have awesome conversations with, and also just have fun hanging out.  It hit me, we are in a place it’s okay for us to be friends with our kids now.

I recently discovered an Instagram page that I love. It’s Grown and Flown, and it has me nodding my head on the daily. Something in particular struck me today, even as I was considering this latest parenting transition. The post said “….while partnering to problem-solve.” We are still the parents, parents-who-are-becoming-friends, but we are entering a new phase. We are no longer here to enforce rules and regulations, create firm boundaries, instill ethics and morals. Most of that work is done. We’re here now to give guidance, suggestions, wisdom, a safe place to land, a shoulder to cry on, support and encouragement. Oh, and pay college bills. The phrase quoted above, “partnering to problem-solve” states that clearly. We bring our life-experience to their problems to help them work things out when they need it.  They are adults, able to manage their own day-to-day. Our job now is to help them learn to navigate when difficulties arise. It’s no longer our responsibility to tell them what to do and how to do it, or to keep those problems from arising in the first place by micro-managing their lives.

I have to say, I’m enjoying this transition. I love the kitchen conversations we have anymore. We’re blessed in that our kids talk to us and tell us things (okay, so sometimes they don’t tell us things in the moment, but they tell us things). It’s interesting to hear their perspectives. It’s a blessing they ask our opinions. I’m grateful to be in a place we can become friends with our adult kids.

In other Herd news, today is Little Man’s annual IEP. I’ve been so busy, it hasn’t really been on my radar, but the day is here. Those nerves are rising. I’m not expecting anything surprising, but those curveballs can always be thrown. Then it also hit me, after today we have just two more of these annual meetings. Send the good vibes, please. IEP day is always a rough one on this momma’s heart, no matter how much progress he makes.

Yep, still autistic

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We went to see Big Man this weekend. It was homecoming at his college, of which Spouse also happens to be an alum. Little Man has gotten used to these trips, and knows the drill.  He has a strong desire to spend time with his brother, but generally on his terms.  He likes to hang out in the dorm for a bit, to play video games with his big brother. But when the college-student-shenanigans begin, he’s out. He’s just not mature enough to want to be included, much less for those college students to want him included. Regardless, Little Man (I struggle to continue to call him Little Man as he has six inches on me) handles it all pretty well.

The schedule of events this weekend included a football game. He’s been to them before. We’ve endured a couple of meltdowns (once when he lost the foam claw we’d bought him before we got to the stadium which resulted in buying a new one in the stadium, and once when the noise became just too much, and he actually fell asleep for nearly an hour), but it’s actually been about four years since he was at a game.

The plan was for the Princess to join Big Man in the student section. As we were walking in, Spouse suggested Little Man go with them as well, thinking he would like to be with his siblings. My gut reaction was nope, that’s just a bad idea. I’m also trying to let Little Man try new, challenging-for-him things, spread his wings, stretch his abilities. So off he went.

Spouse and I made it up the ramp to the deck where our seats were located, and I realized I had Little Man’s phone and headphones in my bag. Warning bells sounded in my head. If he were to survive any time in the student section, I knew for sure he wouldn’t be able to do it  without his phone and headphones. Spouse headed back down to the main level. I followed shortly after, and found Spouse with Little Man who was mid-meltdown.

He was crying and shaking. Bless, it wasn’t the worst meltdown he’s ever had, but we stood in the middle of the stadium entry, trying to calm him, reminding him to breath, telling him he was okay. He’d been lost for nearly ten minutes, which to him was an eternity. As we’ve always taught him though, he went back to the spot he last was with us, and waited there. That’s where Spouse found him. We got him calmed down, took him to our seats, and everything was fine (we did splurge on a drink and snacks purely out of guilt). He did well enough he was even asking Spouse about the game itself.

Here’s the thing…He’s been doing so well, we forget. We don’t ever forget he’s autistic, but we forget he has limitations. We forget the hard parts….until we get slapped upside the head with a firm reminder, as we did at the game. He’s autistic. He’s always going to be autistic. There are some things he will get better at handling, but some things are just always going to be a struggle for him, and some things he just won’t ever be able (or willing) to do. Saturday was a reminder for us of that very thing. Herd at UA

Halloween Scrooge

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The Herd lives in a upper-middle, gated, suburban community.  Our hood is  known throughout town as The Place To Be on Halloween. The gates get opened, and cars full of families flood in. We get 800-1000 kids at our door each year. It’s simply awesome. The streets are full of adorable toddlers up to scarily-dressed teens (BTW – I really don’t mind the high-school-age trick-or-treaters. I’d rather they’re here getting candy than somewhere else doing all the bad things). We love it, and look forward to the craziness of the night every year.

Apparently, there are some in our neighborhood who do not feel the same way. Our community is split – one side is two-story homes, and one side is single-story homes. We also have an HOA. We aren’t particular fans of our HOA. Not sure if it’s like this everywhere, but it seems the HOA board is comprised mostly of much-older people with nothing better to do than complain and judge their neighbors. They are so ticky-tacky with the “rules”. Drives me crazy.

Anyways, I heard a rumor from a neighbor who used to be on the board that the HOA wanted to close the gates to non-residents for Halloween this year. What the? Honestly – we don’t live in Beverly Hills. We aren’t any better than the people in the neighborhoods all around us. We just happen to have a few gates. And we’ve invited friends from all over town to join  us over the years for Halloween because that just makes it more fun. So to close the gates to “outsiders” is a) pretty impossible; and b) just rude. Apparently, enough residents felt the same that the idea got quashed.

We have electronic marquees at each gatehouse – typically used to notify of board meetings, etc. Early last week, I noticed they said, “Please limit trick-or-treating to 6pm-8:30pm”. Whatever. It was a suggestion. It annoyed me for some reason, but whatever. Then the other day, actual signs appeared on our gates that literally say, “Halloween Hours 6pm-8:30pm” Now, those are generally the hours we’ve been handing out candy as long as we’ve lived here. Some families start earlier, as they have really small littles and there are bedtimes to consider. Our light is usually turned off before 9pm as the trick-or-treat lines slow to a trickle.  So the signs shouldn’t bother me, but for whatever reason, I get completely Grrrrr every time I see them.

Halloween Hours? We’re not a store. We’re not an amusement park. These are private residences. I get there are people in the hood who don’t celebrate, and/or don’t want to be bothered with a ton of kids. And trust me – the candy expense with that many trick-or-treaters isn’t small. But don’t put that on everyone in the hood. Don’t dictate Halloween, ya Halloween Scrooges! You don’t want to celebrate? Keep your light off. You don’t want to spend that much on candy? Go halvsies with a neighbor and give it out from one house. Or again, just turn your light off when you run out of whatever you’ve bought. But if I want to hand out candy from 5-9, that’s my prerogative.

Am I overreacting? I’m probably overreacting. I just don’t think an HOA should dictate a holiday that’s not even about them, and doesn’t  have to impact them if they don’t want it to (Oh, and I’m very aware my grammar is atrocious today – I apologize). I hope this is the only year those signs are up. Halloween Hours indeed.

SONY DSC
SONY DSC
My beautiful picture
My beautiful picture
My beautiful picture
My beautiful picture

Tattoo

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The Princess turned 18 this past weekend.  Big Man surprised us all and came home from school for the weekend to be here for her.  We had a family lunch Saturday afternoon, and she had friends over for dinner and to hang out Saturday night. She’s not much for having big things made for her. But she was celebrated, and it was a good weekend. I do have to tell you about the gift we got her (or are getting her), the story behind it, and how step 1 went down on Saturday.

For almost two years now, she’s asked for just one thing for her eighteenth birthday – a tattoo.  We aren’t really a tattoo family, in that neither Spouse nor I have any tattoos. Just never been on our radar. I’ve seen other tattoos I’ve liked and appreciated, I’ve just never found one I loved so much I needed to go through the process. But we told her at 18 years old, it’s her body, her choice. We just wanted her to consider the permanence, and the location, particularly as she wants to go into the medical field. Spouse, being a professional in the development/CRE/engineering industry knows many companies are still fairly conservative and asked she keep that in mind for her future. But she’s been consistent and persistent. So, as soon as field hockey season is done, she will be getting her tattoo.

I’m sure you  may be asking what tattoo she will be getting. Well, there’s a story to that, and it involves me also getting a tattoo. Yep, not only did she ask for a tattoo for her 18th birthday, she asked to get matching tattoos with me. I know right??!! After the struggles we went through for nearly two years, I was probably more surprised than anyone. It was a REALLY rough time, but we’ve both come a long way back to normal, particularly in the last twelve months. I’m so thankful for that. And this has so much meaning to me that I’m taking the deep dive and getting a tattoo as well.

She’s danced since she was three years old, with that 1.5 year break after her Freshman year of high school. She also played competitive soccer, for which I was the team manager (think Team Mom  on Steroids). We have spent more hours than I can possibly count in the car, waiting at fields between tournament games, and waiting at dress rehearsals and competitions. The windshield time is probably our most precious time. We have time to talk, and we always have the music on. We generally are singing along (we don’t suck at singing, and even if we did, we wouldn’t care…we’d still sing). We both also love Wicked – the soundtrack has been part of our rotation for years, especially after Kurt and Rachel sang “For Good” on an episode of Glee.  Now that song became a particularly special and meaningful song for us, and we’ve learned to sing the parts – me the part of Elphaba and her the part of Glinda.

When she suggested matching tattoos, I just told her it would have to be perfect, and it would have to mean something to both of us. It took nearly a year, but she came up with tattoos that represent our time together, our “things” we do, what matters to us. So, we will be getting tattoos of the broom for Elphaba and wand for Glinda, the sticks/stems of which will say “For Good”. They’re amazing, and I can’t wait.

I love that girl more than words can say. I’m glad she doesn’t seem to think I’m a crazy tool of a mom. I’m glad she wants to share this with me. I’m glad (really) we will both be getting permanent, visual marks of what our relationship means to us.

And now for the really funny part….We can’t get the actual tattoos until after field hockey season and my half marathon are done. Something about sweat and covering…blah, blah, blah. I know nothing about tattoos, so I’m totally taking the advice of the professionals. P did want to meet with the tattoo artist we’d chosen to go over what we want, where we want them, and to just get to know him (before he’s shoving needles into our skin), and she wanted to do that ON her birthday. So Saturday afternoon, we jumped into our SUV and headed to the tattoo place.

Lemme back up….we are white, suburban girls. I mean, we show up in the dictionary under “suburban white chicks”. So we roll up to the tattoo place in my mom-mobile, I think I even hard a cardigan on, and walked in front of about five guys out front who were smoking and definitely had experience with tattoos. No judgement on our part, but we could definitely see them smirking at us. We were nervous as heck, and totally laughing at ourselves. Pretty sure we were both blushing up a storm as well. The selected tattoo artist came over and handled our nerves like a pro. Once we’d discussed what we wanted, what we need to expect, and scheduled the actual appointment, we walked out, got into the car, and could not stop laughing.

So, on November 13th, we will be getting our matching tattoos. Happy Birthday, my P. I love you, and thank you for even wanting matching tattoos with your mom.

PSAT

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Tomorrow morning, Little Man will take the PSAT for the first time. I am scared as hell – not gonna lie on that one. I have zero clues how this is going to go, and it could be the biggest failed experiment of all time. But if he has any idea, any ability of going to college in a few years, he has to deal with these standardized tests. And we need a grasp on how that’s going to go.

He’s known for a month now this is coming. I’ve talked him through the schedule. His special ed teacher/support has met with him twice to go over the schedule and the expectations. His siblings have given him their perspectives. I talked him through it this afternoon, and we will go over it again this evening as well as tomorrow morning.

It has every chance to go completely sideways. He cannot have his phone. He cannot take in his sketchbook. He cannot take his headphones. He cannot leave between sections, even if he finishes early.  He cannot work ahead. He has to follow the rules. It has all the ingredients to be a giant cluster. But we need to know that. He has always taken the standardized tests, but this is a whole new ballgame.

We need to know what accommodations he will need for the actual SAT, if any. I need him to have experience with this whole process. The more exposure he has, the better he is able to deal with it. He does have preferential seating tomorrow – in an area that is expected to be quieter and with fewer disturbances. I’ve also been assured the proctors are aware of his situation – that they will be keeping an eye on him, and will report back.

I had an incredible conversation with him last night about the whole thing. He’s anxious, as is to be expected. He was worried we expected him to get a perfect or near-perfect score. I let him know our expectation is only to give him experience with the exam and the process of the exam, that we are hoping to figure out if he will need any accommodations for the SAT itself when he takes that in a year-and-a-half. He was so mature in his understanding and response. He really is growing up.

So we will see how tomorrow goes. If you’re the praying type, if you’d lift one up, I’d appreciate it. Same goes if you’re the vibes or just good thoughts type. I’ll keep you posted.