Clouds, May 2010

Clouds, May 2010

Tuesday, May 25, 2021

superhuman strength

Hayden's developmental pediatrician, the doctor who manages his medication regimen, has wanted Hayden to have bloodwork for some time now. This is due to one of the medications that he switched to a couple of years ago. At the earliest time that it would have been appropriate for him to get the first blood test, which was within the first year of taking it I believe, it did not happen. Less than a year after that, the pandemic happened. His visits with the developmental pediatrician went virtual, but he did have an in-person visit with his regular pediatrician for his annual checkup. Based on his health at that time, the pediatrician said if we did not yet feel comfortable bringing him to a lab for his bloodwork that we could wait. Well, now we're into the following calendar year. At his most recent scheduled visit with the developmental pediatrician, the concern was voiced that now it really is time. The latest script for the bloodwork was due to expire soon as well. 

Dan & I planned to attempt this today. The last time Hayden had bloodwork he was just a little kid-- (due to suspicion of Lyme disease--) & he doesn't remember it. The time before that he was barely a toddler & that was the big one-- just before the fragile x news-- because he was tested for everything under the sun to try & determine the cause of his developmental delays. So knowing that he didn't have a point of reference (if you will) for getting a "blood test", I simply told him you don't have to answer any questions (he takes things literally). I said it's a tiny sample from your arm, & it's really quick. He was immediately anxious but I reminded him he felt the same way before the dentist, & before this appointment & that appointment, but then after he got it done he was always proud of himself. Naturally, he also wanted confirmation of a prize after. 

The developmental pediatrician referred us to a lab within the same healthcare system, & explained that they are experienced handling all kinds of kids.

When we called the lab to schedule the non-question blood test, we found out they only do walk-ins. I explained our situation, did not sugarcoat the challenges this would pose, & they said as long as we come between 10 & 2 they would have the maximum number of technicians on staff because the morning & evening hours are more staggered. They also suggested having one of us go up first to register Hayden so it's less wait time. Called again about an hour & a half ahead of our likely arrival time, & I gave them a heads-up about what time we would be there. The woman I spoke with said she gave the lab his name, so at least they'd know who we were when we got there. Dan arrived first & what do you know, they wouldn't let him register Hayden without Hayden being present.

Then they told us that only one parent would be allowed in with him & I re-explained that this had been communicated ahead of time because we're going to need all the help we can get.  And the only reason I was able to reiterate that-- (not a smart thing to say in front of Hayden--) is because Hayden had sat down on the other side of the waiting room with Dan, who was now on the phone with the insurance company. Why? Glad you asked. They needed to know ahead of time which lab they could send the sample to for testing, so it would be covered.
Hashtag #ThanksForTheHeadsUp & #AppointmentsMatter

Went to a sub-waiting room for a short bit, & when they finally called us in there was one person.
Also worth noting that moments before I saw a mom & her baby exit the middle exam room, with said person, who proceeded to tell us to enter the same room. So now I’m painfully aware that the room wasn’t sanitized between them & us. We walk in & although the paper on the exam table looked like it hadn’t been touched, the chair where you sit for the blood draw had a plastic needle cap on it. I was at a Kohls recently, & they wouldn’t even call the next person up to the cashier without sanitizing the entire counter-- true story. And here we were at a blood lab within a children’s hospital on the heels of an unprecedented pandemic. Lucky for us, no shortage of sanitizer in my purse so I did my thing.

Anyway, this woman—albeit friendly, because she was—was also not getting anywhere near putting that needle in his arm. She went & got another woman to try. Same thing. So we finally asked where the others were & they said they were all at lunch. Silly us for not communicating with them ahead of time so they knew when to anticipate our arrival. (Oh, wait. Nevermind.) We did however remind them that they had told us to come in the middle of the day, to be able to accommodate him.

So the next fun part was waiting for the others to return from lunch. All of this extra wait time which should have been avoided was of course increasing his anxiety.
But it gets better.

During that time one of them saw a notation on his paperwork & asked if he had fasted. I said no he did not.  (A) I did not realize he should have, but (b) that would not be possible without being able to schedule an appointment. Also worth noting that at one point, one of them offered Hayden Lorna Doone shortbread cookies & a juice cup… to try & help him calm? I guess? And even if she didn’t know his diagnosis, she knew she just offered a snack to a kid with special needs without asking mom or dad if he can have that or you know… has allergies or something. Nothing important. (There were also sticker offerings-- I think he left with half a dozen or so.)

I calmly said no thank you to the snack & added that he has a strong gag reflex, & that when he gets upset he could throw up. Also added that he doesn’t drink juice (so they offered water). Side note, if we needed him to fast ahead of any bloodwork, even with a hypothetical appointment, one more minor complication is that we can only get his daily medication in him with food.

When everyone returned from their lunch break we were then directed to an identical exam room next door-- sanitized status unknown, but thank you for the extra transition. We love transitions. And waiting. But most importantly more than an hour after we arrived, & with the strength of 6 adults (including me & Dan) to restrain Hayden, they got the blood draw done. One of the technicians was a young, tall, strong-looking guy. He took a step back after it was done & he said to no one in particular, "he is strong." I responded with a nod, & said "we communicated this ahead of time.".  I am not so sure he heard me with all the commotion, & the people, & the face masks. Also not so sure he realized he repeated himself, but as he was still catching his breath he said again, "he is strong." I said, "yes, pediatric because he's still a minor but certainly not in size." He heard me that time & then looked at me in agreement, & I think he may have repeated himself one last time. Nice man, & I appreciate the way he approached Hayden when he walked in the room, but he was not prepared for our Hayden. (We tried to tell them.) But when you have that much solid weight of anxiety in front of you, & you drive said person into a fight-or-flight mode, you're going to get an almost superhuman strength. (A couple of years ago when we went through that particularly tough time with him, one of the days when he became very heightened & out of sorts he actually moved part of our sectional with me on it.) Hayden does not know his own strength. Separately, he also has an emotional memory though. For this & other more obvious reasons, I have already communicated to his developmental pediatrician that we need to figure out a way for him to be better assisted in the future.

In addition to Hayden yelling during the blood draw that he hates blood & "why are you doing this to me" & "why are you so mean to me".... he also communicated many times over (especially beforehand when the first two technicians attempted the blood draw on their own) that we need to call Grandma & Pop Z & tell them where we are & what's going on. He kept telling the technicians he needed to call his friend, his buddy (a.k.a. Pop Z). It seems when Hayden was in crisis today, Dan & I got demoted. 

Fast forward to us finally getting out of there, & Hayden wanted to go in Dan's car. After all, I brought him to that place so I guess he preferred his dad to take him the hell away from it. So I called Pop Z on the way home because I figured Hayden would try to call him as soon as he could. And since my dad was working, I wanted to give him a heads-up because he might not be able to answer the call-- especially because it would be video. 

Hayden ended up waiting until after a previously scheduled session with his in-home counselor this afternoon, & then he called Pop Z from his iPad. Just going to interrupt that thought for a second, because when I picked Hayden up early from school his teacher said he was all pumped up & ready for his blood test. Hayden definitely knows when there are opportunities for him to be proud of himself, & for others to be proud of him. So this is also why I wanted to share what happened today, because his conversation with my dad opened with Hayden exclaiming, "I got good news! I got my blood test! It went fine!"
He also proceeded to tell Pop Z that he's getting his COVID shot next week. Mind you this is news to us, but more power to ya kid. 

Then later, he called Grandma Suzi from his iPad to ask how her nail appointment went (which he must've heard about from Pop Z). I was within earshot & it sounded like she showed him her nails... & he said they look so good... & he wanted to know who did them... & how long it took... & then he also told her the same new-news about getting his COVID vaccine next week. Apparently. 

About that prize, by the way, his birthday is not for another month but I gave him one of the presents I had set aside. Honestly, if I had the means I might've given him an entire store today. Or an auto body shop. Something.
After everything that happened today, I just keep hearing his voice, "I got good news! I got my blood test!"
That attitude. That 's the superhuman strength right there. 

--


Friday, April 16, 2021

the only shot we have

A Sussex County resident submitted a letter to the Editor of a local newspaper, as to why she won't have the shot, and unfortunately her letter was published. This is what she wanted the readers to know. I started to research her claims because I couldn’t help myself, and this went sideways very quickly.


She numbered her five points.

1. She’s very clear that you best not tell her that mistakes weren’t made when the vaccine was developed. I would however challenge her to tell me an appropriate comparison. When was there ever a time in the history of the world (part one or part two) that all researchers from around the actual globe-- and literally during the same time period-- were simultaneously and collaboratively focusing on the development of a vaccine for the same thing.
Since the start of the pandemic when scientists and manufactures and distributors immediately began working together, in an effort that is unparalleled in history, the result was inevitably expedited. I’m not saying this to point out the obvious, but then again sometimes you just gotta.

2. She, the Letter-to-the-Editor author and self-proclaimed expert of all things related to the Covid-19 vaccine, says “the lack of properly extensive testing” is “a major risk factor”. While mRNA vaccines are a new type of vaccine, the technology of an mRNA vaccine has actually been studied for well more than a decade (they’ve been studied for the flu, Zika virus, rabies, and more). Now she may not want to hear this, but I’ll say it anyway. Many vaccines are designed to trigger an immune response by introducing a weak or inactive germ into our bodies. But unfortunately contrary to Internet memes, mRNA is not the same and does not work that way. Instead it instructs our cells to make protein to trigger an immune response, and this immune response is thankfully much smarter than self-proclaimed experts and it will produce antibodies. Antibodies are what protects people—even angry, pessimistic, accusatory people—from getting severely infected if the virus got into their system. The Covid-19 mRNA vaccines essentially instruct our cells. We’ll learn more about cells when we get to the fourth point in her worrisome display of unique knowledge. But first, we have number three.  

3. She is beside herself that vaccine developers will not be held financially accountable if things go south with an injection. It’s not clear what south means, but she does specify that “hundreds of people have already permanently gone south from the injection and their families are left with no legal recourse”. No details or even a single example of who these hundreds of families are.
So, there is technically a protection currently in place (which will I believe will last until 2024), and no it is not common for a blanket immunity law to be passed. But it was essentially a knee-jerk reaction from the pharma companies who said to the government, okay, if you want us to fast-track the development then we want you to protect us from lawsuits. It’s important to remember that the FDA approves products for mass distribution—not the vaccine manufacturers. So no, you can not sue the government if you have “permanently gone south from the injection”. This is because no one can sue the FDA for approving or not approving anything—and this was also the case before the pandemic, too.

4. She Who Will Not Be Named took that accountability theory a step further and focused on life insurance. And then threw gene therapy into the mix! After all, she says she read—she doesn’t say where, she just says she read—that insurance companies are refusing to pay out policies to the families of those that die since the vaccine is not technically FDA approved. The only thing she did get correct is that “experimental” is not the same as “emergency use” (insert me clapping my hands). However, it’s worth noting the emergency use authorizations are issued by… (drum roll)….the FDA… the same FDA who did in fact issue such use for the vaccines. While there may be other vaccines out there in the universe which are still in the experimental or investigational phase, the ones which are legally available to the public are approved for use because they were tested beyond that stage. As far as insurance companies-- and social media can pat itself on the back to take credit for this one, too-- but the spoiler alert is that her beliefs are simply not truths. And as author of this Letter to the Editor, she conveniently forgot to call her (or any) insurance company or insurance expert for that matter-- to ask if the vaccine would jeopardize coverage. (Credible online sources report that coverage is not compromised.)
As far as gene therapy—also something discussed in the dark corners of social media-- people are deciding that mRNA vaccines are exactly that. The only problem with this theory is that mRNA vaccines, including the ones for Covid-19, do not alter people’s genes in any way.  If you look up gene therapy, and also the anatomy of human cells, and the difference between DNA and ribosomes, then you will learn I am not lying.

5. She quotes a veterinarian who recently self-published a manifesto. Her argument for including his thoughts is that he’s generally a pro-vaxxer.
He may or may not be able to speak appropriately on behalf of animals, but has completely lost me as far as his knowledge of humans. A quick search revealed the masterpiece he authored has been debunked all over the web due to its chock-full-of incorrect information, and complete lack of real evidence.  

In conclusion, she wants local newspaper readers to know that she has no idea what she’s going to do. She not only mentioned that it’s also the fault of the Democrats, but in addition she finds it bizarre that it is legal to “kill a pre-born baby” but she doesn’t have the legal right to decide what goes into her body.
My first thought was how do you compare pregnancy to a highly contagious, potentially deadly disease?
But I was immediately distracted from that thought when she brought up Nazi Germany forcing citizens to subject themselves to medical experiments… and how the world condemned them for that, yet here we are doing the same thing?!

This just went from sad-but-almost-funny to what-in-the-name-of-all-that’s-holy faster than a high performance sports car going 0 to 60. She literally compared a solution to a global pandemic with the Holocaust.  I found her on Facebook and was able to see that she recently shared an article about Stacey Abrams and Nancy Pelosi being on the Board of a mysterious unnamed group that is collaborating with the Chinese Communist Party. Some extra clicking around taught me that the sources of this “news” are under the umbrella of an independent creative media developer.

So to the reader who wrote that letter to the Editor, I will say this: if you won’t protect yourself, and therefore you’re also not protecting others, then the least you can do is avoid bringing anyone down with you. Your words are nonsense because everything you wrote is either exaggerated or simply not true.

The real problem of the pandemic is not just Covid, it is also the public.
I’ve said this before in conversation but this past year is like one long journey in terrible road conditions. And I can drive with as much care and caution as I possibly can… obeying speed limits and even white-knuckling the steering wheel when navigating through particularly rough stretches. But unfortunately a major factor in my own safety depends upon the other drivers around me. Their decisions can put me, my friends, and my entirely family in danger. Their decisions can put their own friends and family in danger. Spreading falsehoods is just another example of someone who does not take the road conditions seriously.

The only shot we have at beating this is each other, and you can either hinder or help the outcome.

--

Tuesday, February 23, 2021

Virtual Advocacy

Wednesday, February 24th is the 2021 National Fragile X Foundation annual Advocacy Day! Needless to say, this is the first time in its history that the Event is virtual. 

For anyone on New Jersey's virtual schedule who visits this page either ahead of, or after, our meeting thank you for making the stop! 


Per the packet which was emailed to you, we are speaking about
  • supporting DOD, NIH, and CDC research funding
  • expanding access to telehealth
  • supporting the soon-to-be-introduced STAT Act, for enacting FDA policy reforms, to help smaller populations access appropriate therapies 
  • and asking members of the House to join the Fragile X Caucus 

When we refer to fragile x this includes a group of conditions related to defects on the X chromosome. For example, my late grandfather had FXTAS which causes Parkinson's-like symptoms but none of us (including him) knew why he had tremors. He was a physician but he had long since retired by the time my husband and I were expecting Hayden, and he passed away about five months before Hayden was born. At that time the awareness of fragile x was not nearly what it is now. 

Unbeknownst to anyone in my family including my mother, we learned she is a carrier of fragile x and she passed the gene to me, and that meant our son had a 50/50 chance of being born with fragile x syndrome (fxs). We did not know why Hayden exhibited global developmental delays, but he was eventually diagnosed with fxs when he was 17 months. Fragile x syndrome is not only a genetic condition but it is also the most common inherited form of intellectual impairment. And so far, it is the only known single gene of cause of autism when there is a dual diagnosis. (While a very small percentage of individuals with autism also have fragile x, at least a third of individuals with fragile x also have autism.) Fragile x syndrome not only causes learning challenges but also behavioral issues, sensory processing disorder, low muscle tone, and difficulty with fine and gross motor functions. 

Our guy loves cars and trucks, and working with tools, and playing outside. He has a recumbent bicycle with a hitch and trailer, and he loves riding up and down the street or around the yard making trips to and from his shed. While we have experienced some very significant behavioral challenges, most often Hayden is just a loving person. He has a whole lot to offer in a world that has a lot to learn from him.

While I have been a little off course in recent years as far as keeping my blog updated (and I currently have three unpublished posts that are still drafts in progress), I will come back from time to time. It is my goal to share the good, the bad, and also some things in between because I'd rather the world hear it from me first. 

I hope you'll stop back and visit again soon! 



 

Thursday, May 7, 2020

appreciation week

A truly heartwarming update for anyone who could use one... here are a couple of highlights to our week that will serve as a reminder of the power of good...

So this was Teacher Appreciation Week and on Monday when Hayden's weekly school packet was delivered-- (yes, during this pandemic the Educational Services Commission actually has a bus deliver schoolwork to our home every week--) there was a card in it. Specifically, a thank you card with a gift card, and the note from his teacher read in part, "Happy Teacher Appreciation... I feel you are the teacher to be appreciated!"


A gesture that I have few words for, but will always remember how her words made me feel. I was almost as grateful for it as I was frustrated that she didn't use that gift amount for herself instead, but either way the sentiment is just one of many examples of the generous and kindhearted (almost to a fault) kind of person that she is. Hayden's first two teachers in elementary school were both the kind of teachers you would literally handpick for your kid if you could. In the simplest of terms, two different people with the perfect balance of teaching, nurturing, and advocating. And for Hayden to be paired with a third teacher of that caliber yet again... I can only say we continue to count our lucky stars.

So the next highlight of our week was actually something that would make Hayden feel how I did.

While I don't have a photo to accompany this scene, in the early evening rain last night our son stood patiently on our front lawn. He had a whole bunch of stuff from his shed lined up curbside, because he wanted to have a yard sale. We are eight weeks into these stay-at-home orders and what can I say, he was having a day. He is a very young child in the body of a young man-- a teenager with a voice that seems to get deeper every week, while developmentally he is just a little kid. If you're new to my blog Hayden was born with a genetic condition called fragile x syndrome. FXS is the most common inherited form of intellectual impairment and so far, the only known single gene cause of autism when there is a dual diagnosis.

So the semi-pretend* yard sale fixation carried over to today (*including some items he would not actually want to part with). He was out front with a rusty old wheelbarrow, an antique car jack, a grocery store shopping basket, an empty popcorn tin, a couple of hand trucks, a Regular gasoline sign, a small stop sign, an old bike helmet, a two-seater seat from a child-size electric dune buggie, a bin attachment for a ride-on mower, and a red wagon. Plus a few other miscellaneous items.
I posted a short video of his merchandise on facebook and captioned it (in part) to say that this was one of the very few times in my life that I almost wish we didn't live on such a quiet, no-through street tucked about as far up in the neighborhood as you can get from the main road. Hashtag #AnybodyWannaDoADriveby


We live in northwest NJ and my sister in NY state called me when she saw the post. She asked if should could talk to Hayden and buy something from his yard sale. I hesitated because she wouldn't really be there, or be coming to get the stuff, and that might not sit well with him. She had shown the post to my no-social-media brother-in-law, who then overheard our phone conversation, and spontaneously decided to drive out and shop Hayden's yard sale. 

He left with the seat, the helmet, the jack, the tin, and an inflatable easel (not pictured above).
He also paid Hayden for each item. 



That's the half that'll get you right at your heartstrings but the other half will give you a chuckle... because after he shopped Hayden's sale he stuck around to do some yard work and mowed part of our lawn! There he is way in the distance! 


For hours after he left, nearly every few minutes Hayden squealed about his uncle showing up and how he had such a good sale. 

The noteworthy cherry on top to this day was when our neighbor donated to his cause with an awesome road sign...

and donated to our household with fresh bialys from the city.



A week of appreciation indeed. Today would have been one of my late grandmother's 98th Birthday, and I choose to believe those who are departed are still with us. So I hope that even with some other concerns going on right now on that side of the family, just maybe all of this is making her heart smile too.

--


Friday, May 1, 2020

Welcome to May(be)

If  the phrase "April showers bring May flowers" is translatable to life, then our last week of April was more like thunderstorms.

Post-pandemic, you know what phrase people are probably never going to say anymore? "This couldn't have happened at a worse time."

Last week, after tolerating an almost constant pressure of discomfort in my face for longer than I care to admit, I finally called my doctor because I was sure I had a sinus infection. I have only experienced this one other time in my life and once was memorable enough. After several failed attempts at a virtual visit because the app they told me to download was simply not working, we had to have an old fashioned phone conversation to try and diagnose me. One prescription of antibiotics later, and the pain across the top row of my teeth started to diminish as well as the splitting headache near the front of my forehead. My seasonal allergies were working hard to maintain the congestion in the center of my face but hey, at least the infection was being knocked out so when something in the air made me sneeze it improved from painful to just plain annoying.

I was looking forward to a good night's sleep (by good I mean better). But that would have to wait. In the middle of the night from Sunday into Monday, a sort of clanging noise in the kitchen woke me. I have an upright spoon rest next to the stove, near an oversized mason jar with cooking utensils. Odd, even waking up from a complete state of sleep, how I immediately suspected the sound to be the metal spoon rest hitting the glass mason jar. From the direction of the noise and the distinct sound, I had no doubt that's what I heard. I reluctantly hit the switch to turn on the lights in the back half of the kitchen and immediately spotted an enormous brown mouse scurrying under one of the stove burners! And I know it was enormous, because the doorway I was standing in has got to be about 25 feet from the damn stove. That concluded my plans for a good night's sleep.

So Dan set traps in the basement and the next day not only was the bait missing from them with no dead mice, but one of the traps was just gone. It has yet to resurface in case you were wondering, and also for several nights to follow the same thing happened with the bait. (You would think city mice would be more the Houdini-types versus their country counterparts.) So basically somebody is getting a nightly buffet in our basement and it's no wonder they keep coming back with that kind of hospitality. And in the meantime I am leaving the lights on in the kitchen every night because clearly they prefer to party in the dark.

The night after the mouse came to visit, around 3 o'clock in the morning, Hayden started banging his feet against his floor and yelling for me until I finally woke up and stumbled into his room. No mouse, just vomit everywhere. Because you know a stomach bug couldn't have come at worse time, right?

Fast forward a half a day or so, and between the mouse and stomach adventures, we had extra-disinfected countertops, a very sanitized floor in Hayden's room, and two machine-fulls of twice washed laundry just to make sure we got all the germs. Oh how I wish whatever the hell went through his system had attacked me instead, but we are grateful it left as quickly as it came. Within 36 hours he was at least 80% better-- (more than I can say for my mouse phobia, but--) incidentally just in time for the arrival of a surprise gift tin of popcorn from Grandma & Pop Z. All I can say is at least it's ready-to-eat and doesn't need to be microwaved because I believe ours broke this morning when sparks popped without any metal being inside of it. Haven't braved touching it since, but the popcorn was a tasty snack this evening.

Might as well add who could have known back in January, 2020 B.C. when we scheduled Hayden's next quarterly follow-up with the specialist who monitors his medication regimen, that the morning of our appointment (turned virtual) would be the same Thursday morning that all the stars had (almost) aligned for him to resume his virtual learning sessions which he had missed all week. With the exception of Monday morning which had been canceled by the provider, not the stomach bug. So we had one day of (the new) regular learning schedule this week.

Meanwhile when Hayden wanted to facetime his teacher this morning we caught her in the car on her way home from putting learning packets together for her students-- which all the teachers and therapists do every week for every student-- and instead of explaining to him that she'd call him back, she pulled over to do some of his worksheets with him. Have you ever! I'm all farklempt just thinking about it.

Albeit not enough to turn the light off in the kitchen.

--
To be continued...

Wednesday, April 22, 2020

Noodles

Hayden's 4th Birthday
When Hayden turned four he had a Sesame Street themed birthday party. My parents gave him a plush of almost every character in the Sesame Street lineup, and little did we know that was the beginning of a legacy (of sorts). That summer we took him to Sesame Place where we met Bert and Ernie-- definitely two characters he was partial to at that time. I can't pinpoint exactly when Grover moved up the totem pole, but once he did all the other characters were second rate (even Super Grover-- Hayden never liked him as much as regular Grover). Eventually Hayden started calling Grover by the name "Noodles", nicknamed after that goofy guy on Sesame Street named Mr. Noodles. Hayden has many Grovers but there has only ever been one Noodles.

A young Hayden with some of the Sesame crew-- original Grover in the middle
That plush has gotten a lot of love! So much so, that he had various nose surgeries over the years because the stitching just wouldn't hold as the fabric became so worn. I stitched and restitched the original nose as many times as I could. Eventually one day I had to come up with a new nose entirely, and the only thing I could find in our house that was even close to the correct shade of pink was a Dunkin Donuts hat. It was an orange and pink fleece-material winter hat. I cut out a section of the rim where there was some extra pink material on the inside, stuffed it with a few cotton balls, gathered the bottom so it was like a tiny pink balloon, and reattached it. That lasted for a while but then that fell off, too. One of Hayden's former teachers had given him a Grover puppet which he never really played with for whatever reason, so we were very grateful when the puppet agreed to donate his nose to save Grover-Noodles' face. It was a bit disproportionate as the puppet's head was bigger than the plush's head, but luckily the transplant was otherwise successful. And Hayden was never offended by the subtle phallic-ness of the disproportionate size. 

The original nose on the left vs the fleece nose on the right
Grover-Noodles with his umpteenth (& last) nose. The final transplant made possible by Grover the puppet.

Grover-Noodles has had many notable adventures. From winters playing in the snow with Hayden to places he traveled on vacation with us. One year Noodles even swam in Lake Lenape and had to go in the washing machine (which unfortunately his mouth never quite recovered from, and he was left with a permanent Elvis lip). Mouth and nose aside, he also had lots of repairs including openings around the top of his legs, as well as cosmetic restoration to the pupils of his eyes... and other minor procedures over the years. Sometimes Hayden got very nervous and couldn't watch, and other times he supervised me to the point that I could barely handle the pressure.


Grover-Noodles has made an appearance in family photos, he has accompanied us to school (on particularly rough days), and other times if Hayden was sick he didn't leave his side. Grover-Noodles has been a constant in Hayden's life for more than a decade-- and unfortunately often smelled like it! I mean thank goodness for fabric refresher sprays, but sometimes it gets rough. And in recent months the poor guy has looked even worse than he has smelled. 



On the evening of Friday, April 10th I returned home after running an essential errand and Hayden told me (in so many words) that Grover was gone, or that he got rid of him. I followed Hayden to the kitchen and he showed me the inside of the garbage can. There was Noodles, nose-less, laying beside a plastic wrapper from wipes and a paper plate. I asked Hayden where his nose was and he calmly said, "It's down there." I kind of got a lump in my throat but I said (something to the effect of ), "Well, he lived his best life and I am so proud of you for letting him rest now. You made him so happy and he lived the life that any toy would want!" I started to ask him if he wanted to have a service or something but then I caught myself and changed the focus. 

Grover-Noodles, the last time any of us saw him, in the kitchen garbage
At some point the next day when it came up in conversation, Hayden said something about the garbage people taking Noodles away to fix him up. I immediately reiterated that Grover was at peace and happily resting after a really good life. We shared the news with Hayden's counselor via a video session the following week, and he praised Hayden for knowing when to part with something that was broken. I mean Grover-Noodles' final resting place was a little sudden as far as Dan and I felt, and as a matter of fact on that night that Hayden chucked him in the trash Dan hadn't even realized that Hayden actually put him in there until I got home.

Interestingly, Sesame Street released a special just recently to help young children feel a sense of normalcy during such an unprecedented and abnormal time. It's about a half hour long and features Elmo having virtual playdates with friends, and is just like the view that Hayden has of people who used to come to our home. We recorded it and he has watched this particular show almost every day since it aired, which was actually four days after Noodles was laid to rest-- although technically one day before the garbage men actually took him away.

I will tell you one thing-- Hayden deciding to let go of Grover-Noodles once and for all... right now, during this time... of all the times that he could have possibly done this... I damn near felt like I needed to rescue Noodles myself.

This will definitely be a profound memory for us during this pandemic. I wonder who he will turn to for comfort next?

Farewell, Noodles-- you were so very loved by our guy! 
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A couple of other notable memories...

Years ago, introducing one of his cousins to Noodles
The last photo of them that was ever taken-- just before Passover, April 2020 during
a virtual story session with one of his therapists




Friday, April 17, 2020

Month One

Here's my stream of consciousness for Month One, in no particular order (except for the first one which is a most important reason for us to be grateful...)

1. Since this virus crisis began to affect everyone's daily lives, one of my cousins has been simultaneously faced with each of her children as well as her husband having been hospitalized, each on separate occasions, for life-saving surgeries which could not wait. I think that's plenty tough enough, but no, their hospitalizations were not Coronavirus-related. In the meantime she and my other cousin (her brother) were already trying to secure safe and appropriate housing for my aunt with Alzheimer's-- right when the seriousness of this global pandemic hit the fan. However, as of this week, I could not possibly be more grateful to share that at least everybody in her home is out of the hospital. Continued silent prayers for all are welcomed.

Now, onto other observations during the first month. But let me preface this by stating that none of what I am ranting about here is more important than surviving right now. I have generalized anxiety and writing is just one of my coping mechanisms, so if you're vulnerable to being insulted by some of my musings then don't read them. (I can be vulnerable, too-- I unfollow people or pages on facebook all the time.)

2. Compared to taking out a ponytail, removing a bra, changing into pajama pants, or resting my tired head on a slightly cool pillow, in my opinion the feeling of taking a mask off my face is better than all of those combined. Not a fan (but at the same time a fan). Side note, if you know anyone who is an essential worker please check in with them-- even if you barely know them or haven't spoken in forever, please see if they need anything that you can help with. Even when they're not at work, I can only imagine every hour of every day inevitably feels like a mask on their face.

3. I wish the general public understood that disposable gloves will not help protect you unless you change them constantly. On that note, learn how to properly remove said gloves from your hands, or they will really be a complete and total waste of protection.

4. I am done with online grocery shopping attempts. A week or two ago-- (who knows, really-- could have been a month or two ago) for the first time since this all started, I was able to reserve a time slot to pick up groceries that we ordered online. I had a full, online shopping cart for weeks-- damn near forgot what was in it. One day suddenly two time slots appeared so I clicked on the first one without even reading it, and the page took a very long time to process before finally failing. But somehow it gave me the option to re-continue with checkout. I swear this happened twice until finally it appeared to go through. Once I got the confirmation email I took a closer look and the message said the order would be ready for pickup the following morning. That's when I knew there was something wrong because after weeks of trying to get an available time slot, I could see they were already scheduling umpteen days ahead. I knew my groceries would not suddenly be available for pickup the following morning?! Well, very long story short it turns out the order did go through and it was available for pickup the following morning... which is ridiculously ironic... because I had just finally braved going to the store earlier that week. So once my online order finally went through, I was looking forward to the fact that these groceries would not be ready until a later time when we would actually need them.(Cue that damn Alanis Morissette song...)

5. Am I the only one who is curious what television will be like by winter? (Bear with me, I'm all over the place with this post)
At some point the networks will run out of any new show episodes since no one has been able to be on set to film anything. I'm also just wondering, assuming movie theaters will eventually reopen, how weird it will be when everything that was supposed to release during this time eventually is released... will all those movies be out in the theaters for waaay longer? Until new ones can be filmed? It's all just so odd. And much less important, are shareable buckets of movie theater popcorn a thing of the past?

6. I have been obsessed with this one specific type of paper towel since forever, and I miss it. Also does anyone know why my family goes through napkins like they grow on trees? (You know what I mean.)

7. Every week a bus from the Educational Services Commission, of the county where Hayden goes to school (he's out of district), delivers a packet of schoolwork to our home. Every week the teachers put in something extra special-- stickers, playing dough, crafts, one time a few things for Hayden to disassemble as he loves, and the last packet even arrived with a sweet treat as well as soil, seeds, and two mini pots to plant flowers. Amazing doesn't begin to describe all of the people who help orchestrate these weekly deliveries-- from the teachers to the bus drivers. Even beyond the teacher he has packets from all three therapists, as well as ADL and vocational classes. There has yet to be a single week that I am able to get him to complete a whole packet, but obviously I am still grateful every time they arrive.

8.a. Each week we also have individual virtual sessions with several of the people who work with him-- including PT, OT, his teacher, his therapist through Perform Care and also his counselor through state services. While mom over here has a love-hate with all the scheduling and having to go back and forth between so many different virtual meeting platforms as none of this is streamlined... it is more than anything a sense of reassurance being able to connect with them.
8.b. On another note, they don't always go well. Many of these sessions result in Hayden simply walking away, or much worse. Furthermore, to no fault of our fragile x-related struggles, we don't have a laptop with a functioning camera. So Hayden's attendance requires the only tablet (out of the three we have) which will even hold a connection. And you know conveniently it is his iPad, and therefore THE one that he is used to controlling (for lack of a better word). A webcam was ordered a while ago and will hopefully arrive soon. At least after that the behavior triggers will be more limited to factors such as glitches that could happen to anyone.

9. It is really really really difficult to fulfill the role of Hayden's teachers (plural), therapists (plural), and also adhering to IEP goals, while maintaining being the mom, chef, advocate, and everyone else I am anyway. It is really difficult. I am genuinely concerned about his regression (refer back to 8b). My desperation in wanting to help him learn (or at least not regress) during this time leaves me determined one moment and sad the next. One minute I'll think to myself, Okay, tomorrow will be different. We'll come up with a plan to restructure his virtual learning so he can attend better. And I will have a talk with him tonight, and reason with him. There must be a way we can persevere while validating every crazy and confusing thought and emotion he has right now. And the next minute, the poor guy. I feel awful. I should buy him a present. Oh! He would love that shirt. Oooh... look at that cool truck. 
(Am I the only one who has to make a conscious effort to track Target and Amazon purchases because I seriously can't keep them straight-- what I ordered, when it's arriving, and how much I spent and can not spend any more?)

10. Passover and Easter were just weird. I set the table really nice for each holiday, we had delicious meals for both, did the whole Zoom thing... but it was about as bittersweet as it gets. It still feels unfinished.

11. There is a local mom who is a hypnotherapist-- I know her because her daughter is the same grade year as Hayden, and he was still in district through (most of) fifth grade. Anyway, she does not know I am giving her a shout out on here but listening to some of her mini sessions has helped me fall asleep a number of times since this madness started. Her name is Amy Arvary and I suggest looking her up and following her.

12. Speaking of Shout Out, I am very lucky and grateful that I have two clients whose businesses fall under essential categories. Therefore I still have the privilege of managing their social media pages and I am as thankful for the distraction and the work, as I am the income.

13. For the employees they're currently able to hold onto, beyond blessed for everything that the company Dan works for is doing to help said employees. Yes there have been changes... no, nothing is guaranteed as time moves on... but for now we are as lucky as anyone that they are holding on. If you are in a position to do so, please support your local YMCA with any donation amount. Any.
The organization which Dan is a part of provides housing and social services to more than 300 individuals, families, and veterans through seven emergency, transitional, and supportive housing programs.

14. I have never been as thankful as I am right now to live out in the country in the mountains in the woods. And while I hate the damn hills around here, more so I am just glad that we can take Sammie on family walks. Everyone should be so lucky to be able to spend at least fifteen minutes outside, every day, without stressing about going outside-- so I do not take this for granted.  Even better if those fifteen minutes are spent exercising (such as walking)-- any physical activity may help strengthen your immune system. Even though I really can't stand those hills-- regardless what route we take, we have to walk up a minimum of two to get home--  I know we are fortunate that we do not live on or in a busy road or neighborhood. Or within a highly populated area in general, for that matter.

15. I've noticed trampolines are once again trending everywhere. Hayden has had his for so many years unfortunately he is totally unimpressed with it. I would rent it out by the hour if it was safe.

16. I have a love-hate towards Hello Fresh. The food is delicious, and I appreciate the sense of normalcy that fresh ingredients arrive every week, but it's a lot of freakin work. Both the prepping and the cooking (and the cleaning up after). Sometimes each day takes a lot out of me, and by dinnertime I am not really in the mood for cooking lessons. However, while it is more expensive than if you bought the groceries yourself, it is much more affordable than takeout. It's like DIY takeout. AND Hayden eats most of the recipes they send us, too, which is pretty fanfriggintastic. But I am also freaking out about spending right now so I wouldn't be surprised if I cancel it. Really soon. But not right now, because we have a box coming tomorrow.

17. Please wash your hands with soap and water before cooking, but do not use hand sanitizer before going anywhere near a stove, oven or grill. It is very flammable.

18. I think marriage vows ought to be revised to include in sickness, in health, and during quarantine. And now we know that quarantine does not mean that piles of mail or laundry will be dealt with in any more of a timely manner than if we were not living under house arrest with invisible ankle monitors.

Imma get a little more serious before I conclude this... and MAGA fans might want to skip to #20.

19. I am grateful every second of every day for the fact that our son does not have any underlying health conditions that may put him at greater risk for contracting this potentially deadly virus. However, other factors which may put him at greater risk for contracting this potentially deadly virus-- albeit not related to his physical health-- are the fact that he has intellectual impairment. A person who does not understand as much as someone else, will be more vulnerable than the rest of us.
We can all agree that the CDC guidelines on use of non-medical cloth face coverings, is to help protect others. My face mask helps protect you and your face mask helps protect me. That is a fact. We all know this virus can be fatal and we all understand that it's a serious challenge to figure out when someone has a disease but shows no signs of it.
Now imagine for a moment someone who does have signs but doesn't know how to tell you. Heaven forbid our son developed symptoms it is very unlikely that he would even be able to communicate to us, for example, if he was experiencing chest discomfort. Or if he woke up one day and couldn't smell or taste anything.
This blog is about our journey raising a son with fragile x syndrome but it is also about advocating for him. I started blogging nine years ago and to the best of my memory I only went on a political tangent twice (this being the second time). I have always voted and will always continue to vote based on the person, not their political party affiliation. I lean blue but I am mature enough to admit I do not always wholeheartedly agree with any one side versus another. That said, on April 4th, 2020 the entire world heard the President of the United States of America say, "the CDC is advising the use of non-medical cloth face covering. As an additional voluntary public health measure. So it's voluntary, you don't have to do it. But... uh... this is voluntary. I don't think I'm gonna be doing it. The masks... it's going to be really a voluntary thing...you don't have to do it, I'm choosing not to do it, but some people may and that's okay."
This was not locker room talk. This was spoken to Americans (and essentially heard around the world) in the middle of an unprecedented global crisis. Where in one of the most dangerous ways possible (because he is influential), Trump reinforced his belief that "if you're a celebrity you can do anything you want", and in this case, even make yourself exempt from participation in helping to protect others (my mask helps protect you, and your mask helps protect me). The President should never, ever have told us that this will "magically disappear". Sometimes the only factor of this presidency that restores my faith in humanity, is the fact that the majority of the people did not vote for him in 2016. Popularity is not how he got inside the oval office, and for almost four years this has made me feel better. At least it was just the Electoral College that put him there, and not the people.

20. Please do not make up your own rules and timelines as far as when you can see family or friends, just because you've had it up to here with social distancing. I see people all over social media simply giving themselves permission to spend time with loved ones because it's a holiday, or it's someone's birthday. (Do you think that COVID-19 cares and will leave you be?) And please, for the love of all that's holy, even if you are having a cake with candles for someone who lives with you in your own home-- no one should be blowing the candles out. Make your wish and then use a freakin' candle snuffer. Otherwise bacteria is literally spreading all over the whole damn cake that all of you are about to eat.

In conclusion (no number 21), I just want to say that I believe part of social responsibility is not just distancing but also disinfecting. Please do this if you have to go to the store. I will not even enter a supermarket with more than with myself, my sanitizer, and my payment. No purse, no reusable shopping bags... nothing extra. All necessary precautions are taken when I get home as well-- I give a quick spritz or wipe to anything I choose from the grocery shelf before putting it in the shopping cart, and then I clean each item before putting it away in my house. It's the right thing to do. And speaking of disinfecting packages, (including items that arrive via Fed Ex or UPS...)
You can still support your local restaurants. I would lean towards takeout or delivery of hot prepared meals because heat kills germs, but either way be careful and disinfect the exterior packaging with a wipe-- it won't seep into your food unless the food is unsanitarily-wrapped (I made that up) in tissue paper. And if you don't think you have anything appropriate to clean with, then look again... under the sink, in the broom closet, laundry room... I don't know. I know not every product out there is antibacterial, but I'd say if it's not safe to drink then it's cleaning something.

I am not sure, but I may have been lying about the first sentence in #4. I think I just re-stressed myself out. Stay safe everyone! xoxo

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Oops! Ignore the hugs and kisses...
I'll be back.