Clouds, May 2010

Clouds, May 2010

Saturday, July 30, 2011

better late than never... whenever late is

Hayden didn't finish his eggs this morning, but they were already re-heated and leftover from yesterday. So as I was browsing through the newest posts in the closed Fragile X group on fb, I had what was left of his breakfast. He sat down next to me with his own fork, so I stopped eating but he never took a bite. I suppose he was just in the mood to copy me. 

A little while later I went to grab a tissue from the bathroom and didn't mean to pull two out, so I gave one to my shadow. He put it over his nose and made a raspberry sound into it with his mouth. He threw it in the garbage can, and kept his foot on the pedal to hold it open for me.

A couple minutes after that I headed into my bedroom and he said, "where you going mom?" 
"I have to use the bathroom," I answered. "I'll be right out," I said.
"Me, too!" he exclaimed. "Me go bathroom!" And he ran to his bathroom.

I was less than a minute behind him and when I walked in, sure enough, he was on the toilet. Naked from the waist down with his shorts on the floor, and a whole bunch of toilet paper next to them. 

As usual he beamed when I told him how proud I was, and also as usual, he asked, "Get pize now?"

Thankfully when I was picking up some work pants for Dan yesterday I saw a cute t-shirt for Hayden. He was already wearing it because he found the shopping bag this morning after he woke up. I said, "you're wearing your prize-- that's your new shirt!" (I typically like to wash everything before it even touches his skin but I decided this could be an exception.)

He sat there and scrunched and smiled. Nothing went in the toilet, again, but when something drips or drops in one of these days... and he's rewarded like a king... I think we'll have a pull-ups bonfire.

Thursday, July 28, 2011

"The pen is mightier than the sword" --Edward Bulwer-Lytton, 1839

We took Hayden to the M.I.N.D. Institute back in April (I may have mentioned this in an earlier blog post, at some point). 

The report was said to have been in the mail last month, around the time that we received a letter (per my request) to forward to the Child Study Team at Hayden's school. Now that the CST is out-sourced [insert gesture to Governor Christie here], I just wanted something in writing to reiterate the importance of maintaining Hayden's services moving forward...or something to that effect. Although the new case manager we had last year actually impressed me (and she had some shoes to fill like you wouldn't believe), unfortunately in September we'll have another new one. Again, a direct result of the CST being out-sourced [yay for budget cuts]. I don't know this new person yet, they certainly do not know Hayden, nor are they aware of HOW we got to where we are now. Or what he needs, and why. Lord willing I'll be proved wrong. Just in case, I requested the letter-- always better to have it before you need it. 

After a couple more follow-ups with our contacts at M.I.N.D., and a chain of emails, we learned that we should have already received the report. For whatever reason we didn't, so in the mean time, someone forwarded me an electronic copy of it at 2:00PM Eastern Time.

I read all four pages, twice, and then around half past two I went out for some air and some lunch. I put the windows down, left the AC off, and headed to Panera. I ordered a 'pick two' or whatever they call it: a 1/2 of a I-cost-as-much-as-a-wine-from napa chicken salad sandwich, and a 1/2 of a priced-like-champagne-but-we-only-include-the strawberry salad. 

I didn't know how distracted I was until I pulled my keys out on the way to my car, only to realize I was actually walking through the parking lot with a pen in my hand.

I got back to the office building, walked through the echo-y lobby, and stepped in the elevator (we're only three flights up, but what claustrophobic person doesn't love an elevator). The doors closed, but nothing happened. I was just about to enjoy a panic attack when I realized I never pushed the button to tell it where to go. 

That four-page report had completely monopolized my concentration. This is the latest piece of paper that I have to show for my 6yr old child. Not a kindergarten certificate, or some kind of camp award, or a sports thing, or whatever a typical boy his age might have earned. There is nothing in that report I didn't already live through, there is nothing in that report I don't already know, but everything in that report is nothing I like to be reminded of. 

The genuine-as-family specialists at M.I.N.D. are needless-to-say, beyond wonderful. I have no negative... anything... towards them. Quite the contrary. But when I see something in writing pertaining to Hayden-- good or bad, works both ways-- it can really hit me. 

About 4:00PM Eastern Time I was checking webmail and saw this message from someone at the National Fragile X Foundation:

"Thank you for submitting your "Tale of Self-Determination" in celebration of Awareness Day!  We are planning on incorporating some of the submissions into other upcoming NFXF activities.  Recently, a Fragile X parent approached us to ask for help with a fundraiser.  One of the activities she is planning includes photos of people with Fragile X along with 1-2 sentence captions.  We loved your photo and story on the Awareness Day Page and wanted to see if you are willing to let us use them as part of this fundraiser."

( This is the picture that accompanied our submission: )

There were 172 stories submitted (from June 28th to July 25th-- completely unrelated, but happens to be my sister's birthday). I commented on every single one of them. 172 submissions and mine is one-- not the one, but one-- that stood out. So you can probably get an idea of just how proud I am that Hayden never ceases to grab the attention of others.

That was several hours ago and I'm still beaming about it on the inside.

Yes, the written word is a powerful thing.

Wednesday, July 27, 2011

at least he hasn't forgotten

Last night before H got a bath, he wanted to sit on the toilet. He remembered his chart, but he also wanted to skip right to the "flush" magnet. That's pretty much all we spoke about while he sat there. I pointed out that there was nothing to flush. He pointed out that it was the next step. I pointed out that the next step is to wipe, but there is nothing to wipe. Then you would flush. Then he asked me, "get pize now?"

This went back and forth for a few minutes until I finally plopped him in the tub. However, at least he hasn't forgotten.

Monday, July 25, 2011

good. and tired.

This was our first Monday home together. Hayden's summer school ended last week, and now his home program will begin. He receives the same therapies that he gets at school, but a reduced number of hours. The program is intended to prevent regression until school resumes in September. 

He actually slept in this morning, and I was savoring every single minute that he quietly snored past his usual wake-up time. For some reason I didn't sleep well last night. Then suddenly, 7:30 in the morning, the phone rang. It might as well have been an alarm clock in my ear. It was a therapist calling to schedule a time for tomorrow. (Really??!!)

It feels like we have a revolving front door. All the people in and out during the week to help us with Hayden so we can go to work, and now the therapists will be coming and going, and plus our house is still on the market. I remember when Hayden was in Early Intervention, and Dan & I advocated to have his hours increased. I am pretty sure he started out with only five hours-- two S.T. (speech therapy), one O.T. (occupational therapy), one D.I. (special educator), and one P.T. (physical therapy). 

On the recommendation of Dr. Sudhalter and her team at IBR (The Institute of Basic Research in NY), we successfully increased his Early Intervention services to approximately 21 hours a week. Services of existing therapies were increased across the board, plus he had D.I.R. added-- it's a less structured floor-time play model, where the therapist loosely follows the child's lead (as opposed to A.B.A. therapy, which is more repetition, and typically most successful for children on the autistic spectrum). The D.I.R. alone was 2 hours daily. 

At one point we had up to nine therapists covering five therapy areas, but the majority of the time we still had seven people who were in and out on a regular basis. And it also felt like we were a rest stop. Most of them used the bathroom nearly every time they were here, claiming that many of the homes they went to didn't have a clean one. 

Don't get me wrong, I do give them a ton of credit-- being a teacher is one of the toughest jobs, and a traveling educator must be even tougher. And I'm sure, like most teachers, these therapists are likely underpaid. I doubt I could do what they do. But I will say from the perspective of the recipient of such services, it is still tough on this end... though in a different way.

His first therapy today was supposed to be speech, but unfortunately one of her daughters got ill and she had to cancel. Speech is not in our home, though-- he goes to a private therapist for that. She is PROMPT certified, as is his amazingly wonderful S.T. in school (she has a partial certification). After learning of the cancellation, H and I ended up meeting a good friend of mine for lunch. 

I got him dressed and he picked out a hat. When I told him where we were going, I said, "she's the one who got you the hat you wore on your birthday." He flung the hat he was wearing off of his head, and ran to his closet to get the very cool accessory brought all the way back from a trip to Spain. 

He was extremely well behaved during lunch, and we waited quite a while for our food. It was raining when we left, and he also handled that just fine. He fell asleep on the way home, but woke up just before we pulled in the driveway. Maybe it was the few glances at his peaceful face in my rearview, maybe it was the darkened sky and the rain, maybe it was the result of a full belly, or a combination of the aforementioned... but I was definitely ready for a nap myself. 

Unfortunately getting rained on from the short walk between the car and the house (hopefully we'll move soon and have an attached garage), made him hyper. As soon as we walked in the door, I knew he would not relax and fall back asleep. I tried putting the TV on low anyway, and encouraging him to sit in his armchair. Then I tried inviting him to nap with me on my bed. He was actually excited and grabbed a pillow and two blankets from his room before heading to mine. In between repositioning himself every 30 seconds, he was jumping all over the place. Finally I gave up on that attempt.

But I was not ready to give up on the whole idea... so I offered him a deal. I told him I'd give him money if he took a short nap. "What?" he asked. "If you take a nap, I will give you money," I repeated.

I tell you my child wasted no time and plopped himself on the living room floor with all the stuff he had schlepped to my room, and then some. I was not only hopeful, but immediately wanted to kick myself for not thinking of this sooner.

However, within a minute or two he looked rather upset. "Get me money?" he said.
"Yes, OK, you want it now? I'll be right back." It was either two singles or a twenty and I wasn't about to give him the latter. 

He was beaming he was so happy. "Thanks, Mom" he said, smiling at me. "Best gift! You got me money?" 
"Yes, I got you money," I smiled back. I lay next to him and closed my eyes. He stayed there for barely a few minutes, repeatedly asking me to wake up. That was pretty much the end of our nap. 

So I started to put his laundry away instead of closing my eyes for a few minutes. I yawned my way through the pile, and when the basket was almost empty he entered his bedroom. He had both hands in front of him making fists. It looked like he was going to ask me to pick one. "Got you gift," he said. I put my palm out, and next thing I know he dropped two ice cubes in my hand. "Thanks...I think," I said. Confused. (I don't think he was trying to wake me up because he wouldn't associate ice with that, though it was a semi-funny coincidence.)

"Me cute," he said through his smile as he left the room. 

He's right. He's exhausting, but he's right.

Friday, July 22, 2011

I forgot to mention...

Today is National Fragile X Awareness Day! 

There is still more than a week left to the month of July, and for the remainder of the month, I hope you do your part to raise awareness! 

Learn about it. Share about it. Talk about it. Determine whether or not you or someone you know should get tested. 

Make NOISE about it. And hopefully one day, it will GO AWAY. 


We love attacking Hayden with kisses. Sometimes I pretend like I'm hungry and in between smothering him I say, "Mmmm... I'm going to have you for lunch. You're delicious. I'm going to get a plate, and a fork, and a napkin," (he squeals and laughs and tries to speak but can't), "and I want this piece over here...", (still trying to stop me but he's laughing too hard), "and that piece over there..." 

Eventually I let him come up for air.

This morning he woke up too early (for me), so I crawled onto his bed and acted particularly hungry to "punish" him. 

(There is no one else that can get me to smile at that hour, by the way. Let alone be fun. I hate morning. Usually the first thing I want to do when I wake up, is go back to sleep.)

This time he got a couple of words out. He didn't tell me to stop, or to wait, or ask me if I was "gun" (done). But rather, as I continued to torture him and his giggles escalated he said, "Get fork?" 

Wednesday, July 20, 2011

a local semi-celebrity

I pulled up in front of the school this morning and put the truck in park. I noticed Hayden's Aide walking towards us as I went around the other side to open his door. 

"He had the best time with them yesterday," I said. 

Her daughter Kayla has been coming to the house to keep an eye on Hayden when one of us is working from home, or just as an extra help to keep him busy when he doesn't have any particular commitments in the afternoon (give his grandmas a little break). She's a senior in high school, and her level of energy is an appropriate match for Hayden's. It amazes me that after three hours of keeping up with him, he's more tired than she is. (His tendency to pass out after she leaves is the best part.)

Yesterday, her brother joined them for the last hour because Hayden is always asking about him. He has met them previously at the school, when his Aide brought them for "Bring Your Child to Work Day". They have an older sibling Cody and then there's Ryan, the youngest, who was at the house with Kayla yesterday. Hayden can't seem to get his name straight, so he calls Ryan "Cody", and the real Cody is "Big Cody". 

Kayla and Hayden usually do some kind of water play-- using the garden hose, and a baby pool, or one day she brought water balloons. So Ryan arrived in swim trunks and a T-- ready for whatever Hayden wanted to do.

Kayla and H already had their fill of getting soaked, and both were changed into dry clothes. So when I snuck out to do some errands, the three of them got on the trampoline. Nothing like jumping around in humid, heat-wave weather before she and her brother headed off to cheerleading and football practice! 

When I returned home from the bank and grocery store, H was as soaked as he had been after water play earlier. Kayla said she wiped him with a cool, wet cloth. I thanked her. Hayden asked, "Get me?" as he always does when I come home from any kind of shopping. 

"Here," I said as I put a box of doughnut holes on the table and some watermelon. "I got you these!"

Kayla cut the watermelon, and the three of them sat down while Hayden had a snack. After I put the groceries away (which Kayla offered to help with, but I declined), I sat at the other end of the table checking work email. I don't think Hayden looked my way even once.

So anyway as soon as I saw his Aide this morning, I was happy to tell her how much fun Hayden had yesterday. She couldn't respond fast enough, "I know, my son told me, 'Mom, you're right-- his smile is contagious!' They loved it."

Just then our former neighbor, Janie, pulled up to drop her daughter off. During the regular school year, her daughter is already over at the other elementary now with the higher grades. And every time I see her son I can't get over how tall he is, from the toddler that lived next door when we came out here six years ago. They moved to a home only a mile or so away, but the other house is still vacant.

Janie gave a hello to each of us and Hayden's Aide looked at her and said, "I was just saying, my younger two were there yesterday and they have so much fun with him--" 
Janie interjected, "I know how could you not be happy around him. The other day I had to stop at the old house to close the windows and I could hear Hayden's belly-laugh. I look over and there's Dan, with a giggling Hayden thrown over his shoulder, hauling him up the front steps." 

For the longest time, one of Hayden's school pictures was on Janie's refrigerator (maybe it still is). There have been times that Dan & I are out with Hayden, and someone we don't even know will say hi to him. Usually a staff member from the school. The people at the corner pharmacy know him, definitely some of the local restaurants, and many of the employees at more than one DD within a 5 to 7 mile radius.

I did not want to move out here, but we researched daycare centers and the monthly cost was like another mortgage. Instead we made arrangements with a friend to help out with the baby, following my Maternity Leave so I could return to work. We found a home only four miles from where they live.

At first, all I could think about was the fact that I'd be at least 45 minutes to the closest Bloomingdales, nearly an hour from my parents, and I will tell you the slogan on the sign as you enter this country, I mean county, 'People and Nature Together' was not helping anything. There are local roads with farms on either side, and the fact that we're only minutes from a cow crossing was beyond my comprehension.

But now I realize that even though this small town is not too big, it's big enough that it's not too small. Literally almost anything we could possibly need is ten minutes in any one direction. (If there were a few more Democrats, a local synagogue, and a kosher deli, I think it'd be perfect.)

This is where we live. Where an occasional neighborhood bear steals trash leaving nothing but bite marks on the garbage can, or a bat hides under a table umbrella on the deck, and wild turkeys might congregate on the lawn, or a fox dart across the road, and deer appear almost as frequently as birds. 

And there's even a local semi-celebrity with a famous contagious smile who lives right under our roof. 

Sunday, July 17, 2011


Dan said something which is encouraging me to post this. 

I have no desire to re-live the last couple days, and I have no desire to force anyone else to experience it. However, last night around H's bedtime when we were merging onto the highway on our way home from hospital #2, Dan said, "You know, people don't really get it. They say oh yeah I know Fragile X...yeah, anxiety... but until they've treated someone with it, they have no idea."

So as per my intention, I will remain dedicated to making this blog all about awarenexs. The good, the bad, the ugly, and the beautiful. 

The last couple days were a mix of all four (almost in that order).  

I can not recall whether I first realized Hayden's limp on Thursday evening, but I do know that it was evident Friday morning. Subtle, but evident.

Friday morning when I dropped H off at summer school program, I mentioned to his Aide that it seemed he was favoring his right foot. I said, "While I was at work yesterday, and Dan was working from home, I know Kayla did water play with him outside. Perhaps he just slipped on the grass."

Kayla is her (energetic, sweet, child-loving) daughter and a new babysitter for H. It's evident her bond with Hayden runs in the family. 

His Aide said he would have PT and OT that morning, so she'd mention it to them.  

I got a call from Dan while I was at work on Friday, and I was surprised and curious when he said, "I got some good news." After he gave me a brief rundown of his promotion, he said, "we'll have to celebrate." As soon as we got off the phone I thought about picking up a cake for him on my way home. 

There are lots of people who pitch-in during the help us get through the work/ school days. Our schedules are carefully orchestrated. Fridays, one or both of my in-laws will be at the house for H. 

Around 5:30 I pulled in the driveway with a couple of pizzas in the stifling back-back of my truck, and a salad and cake under the AC on the floor of the passenger seat. Which, by the way, when I ordered the latter, a cake decorator at the grocery store bakery asked me how to spell congratulations. 

When I walked in the house Dan was finishing up telling his parents about the good news. I am pretty certain that before we even sat down for dinner, I realized that Hayden's limp was more severe. Once I said something, Dan agreed and said he couldn't believe he didn't notice it when he got home. I think it's understandable that he was distracted (albeit, happily). 

Saturday morning, when Dan and Hayden left for their weekly diner breakfast I savored my weekly opportunity to stay in bed. Typically they go on Sundays, but the next morning he'd be leaving early for a day of golf. I was just beginning to get ready for a bridal shower when they arrived home. (A childhood friend of Dan's is getting married in about six weeks.)

By this time, the gate and limp in Hayden's pirate-like walk was very obvious. And his out-turned left foot quite prominent. 

After I arrived at the shower, but before the bride got there, Dan texted me to call him. The pediatrician said that the area should be x-rayed and if that comes back normal, he'll need bloodwork to check for lymes disease and a few other ugly things scribbled on the script. 

Dan and Hayden took a lunch break from what lay ahead.

Within the next couple of hours, I had wished the shower was literal. Between the stressful updates from Dan and the unfortunate broken air conditioning in the party room, I was literally sweating. 

Dan (bravely, by himself) took Hayden to the hospital closest to our house. 

More than an hour after they got there, the text from Dan read, "They won't x-ray him cause he won't sit still. They're calling his doc."

I asked if he could somehow lay there with him, or if there was another technician available. The replies were "No" and "No" followed by, "Guy was a(n) [expletive] Hayden is freaking out. Having a great day." 

The next communication was a phone call that they were leaving the hospital. I asked if they were finally able to get any images or draw blood? His answers were "No" and "I wasn't about to put him through that after the nightmare with the x-ray."

By the time I arrived home that afternoon, Hayden was slumped to the side in his foam armchair. He looked miserable. Dan was on the couch wearing an expression that translated to I'm out of ideas and I'm exhausted.

I foolishly got on the phone and called the hospital to ask if they could give me an approximate wait-time for the ER. Then I called a different hospital (approx 35-40 min away) and asked the same thing. 

Both responses were, "an hour or more," and one followed by, "it could get worse or it could get better. Unless you're here at 3 in the morning...I'm not being sarcastic... it's difficult to say."

I decided we should drive to the other hospital, to avoid returning to the scene of that morning's situation. This is one of the hospitals owned by the healthcare company for which Dan is a part of their technical support. He maintains a certain number of software systems that hospitals rely on, such as patient applications, bed tracking, etc.  (Interestingly enough, the hospital that is only 10 minutes away from us was recently acquired by this healthcare company as well.)

Having access to employee parking areas and entrances certainly made getting into the building somewhat quicker and easier. Or it seemed so, anyway. At the very least, it was nice to be led by someone who knew exactly where they were going. 

Let's just fast-forward past the the whole registration process and getting assigned a patient room in the ER (before which Hayden went to the bathroom out of nervousness).

Four nurses entered the room, prepared to do the blood work. One of my blog posts last month, titled "another aspect of personal hygiene", outlines the horrific experience of grooming Hayden's nails. This was worse. 

The hospital bed was raised above countertop height, and there were two nurses to my left, and two nurses across from me. I believe Dan was at the foot of the bed, but my eyes were closed. Standing on an angle with my calves clenched, I was leaning towards Hayden with my chin just barely resting on his left shoulder. 

As his panicking cry escalated, and he was nearly choking, the voices of everyone trying to calm him grew louder. With my right palm rubbing his back and my left palm resting against his chest, amidst the surreal scene I whispered to him. I don't know whether or not he could hear me, or register anything other than a needle puncturing his arm and being forced to stay still. 

In between kissing the tears on his cheek, I breathed the words "I'm so proud of're doing a great job...I love're okay...almost done..."

I don't know how to begin describing the transition to the x-ray room, but I can tell you that it was an unsuccessful attempt and we ended up back in the patient room. 

I am certain that I communicated to the pediatrician who first saw him, that one of us would have to put a vest on and lay with him because he would never be still. I explained that we needed to do whatever we could to avoid a repeat of this morning. There was no way I was leaving that hospital without both of the tests completed.

This information may have not made its way to the radiologist. I don't know-- what I do know, is that she (the radiologist) was not a very good listener.

As I stood beside the x-ray table while my son was trying everything possible to get out of Dan's hold, I attempted to recap my conversation with the pediatrician. The radiologist repeatedly interrupted me with, "I know, trust me, I know... I been doin this a lotta years and I know."

When she walked across the dark, cold x-ray dungeon to grab a miniature rubber duckie, at that moment I KNEW something too. She was in fact talking out of her ass. Which is exactly where I wanted to shove that damn duck as I watched her approach a terrified, still-crying Hayden in an embarrassing (for her) attempt to use the stupid thing as a distraction. As if it would calm him that she was pretend-playing with a bath toy. A BATH TOY. In an absurd voice she pretended to be speaking for it, and said, "I want to get x-rayed, too!"

Hayden actually stopped crying for about two seconds. In complete shock. Then his panic resumed worse than before. 

It was shortly after this, that the flappy-mouthed radiologist was quiet as we walked back to the room we had been assigned in the ER. While we waited for next steps, we had to change Hayden again.

They ran tests for another patient, and then came back to us. When Flappy-Mouth returned, she was accompanied by a doctor already wearing a protective vest. I bit my tongue to avoid the "I told you so" from slipping out of my mouth. 

If someone had been listening against the dungeon door they would have thought Hayden had been locked in there with Hannibal Lecter. 

While the one doctor wearing the protective vest tried to keep Hayden's legs steady, Dan (also "vested") was beside the x-ray table completely sloped over Hayden to keep his torso still. 

I was behind a three-sided area with the cruddiologist. Almost ceiling-height glass separated us from my son. 

Needless to say he was once again thrashing about, screaming and crying in hysterics, and purple-faced. 

When they had to pull Hayden's pants down and force his legs in a frog position to get the image of his hips, I saw him spring-forward in an attempt to sit up, throw his head back, jaw dropped... and no sound came out. 

This was a reaction to vulnerability, not pain. His fear of not being in control, and not knowing what to expect. 

A second later, after he caught his breath, the desperation that released from this child's mouth was not something I care to dwell on any further. In fact, from this point forward I'd rather forget it ever happened.

At this point they thought they were done, and I said, "you already got his foot and his ankle?" The cruddiologist answered, "They didn't put the code for both." 

I heard her say "hips" and "foot", but I don't know what else. My brain was stuck on the expression of the other doctor's face.

"You should do both," he said. "We'll need both." 

"I can't without the request," she answered. 

"I'll have them change it," he said. 

"Ok," she said, and then took a step back from the cockpit of keyboards and monitors to signal that she'd wait.

Hayden continued to have a nervous breakdown, and as the other doctor walked towards me and the cruddiologist, Dan was now on the battlefield by himself. 

The doctor angrily replied to the radiologist, "then I'll go get it now!" We didn't resume the torture until the stupid piece of paper came through the printer to confirm the complete x-ray. 

When they were finally done for real this time, my wet cheeks alerted me to the fact that apparently I had been crying. 

Even though it was over, Dan was still struggling with Hayden to calm him enough to get his socks and sneakers back on. Through his short gasps for air Hayden repeatedly cried, "Get pize now?" The "pize", for "prize", was louder every time he said it.

At home he gets a prize when he cooperates for something exceptionally difficult for him to tolerate. Or, to acknowledge an accomplishment. So anything from accepting medicine to sitting on the toilet.

Still frozen in the same spot where I was initially instructed to stand, I heard the cruddiologist talking to herself as she was scrolling through the x-ray images on one of the monitors. Barely paying attention to anything on the screen, she shook her head at nothing in particular and said, "I seen tough. I seeeen tooough." 
She paused. "I ain't never seen tough like that."

I don't know what kind of noise was still going on around the x-ray room, but for me, after that it was all silence. 

The blood test results came back negative. The x-ray images all normal. The conclusion was that it may be a sprain, but it will be a few days before we have the lymes disease results.

At this point we were just waiting for the discharge papers, and they mentioned something about giving him ibuprofen in case of swelling. 

A young nurse with skinny eyes, or maybe it was the iridescent shadow on the complete surface area of her eyelids (which seemed entirely too far from her brows), came in to force some of the liquid orange medicine down Hayden's throat. With my permission, that is. It's the only way. He gagged, choked, threw up, and then we were done. It was over.

During the drive home I wanted to keep turning around to check on Hayden, but I could barely tolerate the sight of his his wide-eyed comatose expression. 

Even though it was well past his bedtime, I think it made US feel better to stop and get Hayden a "pize". While Dan was in the store, Hayden and I waited in the car. He was silent.

I believe a good five minutes passed and he started to say something that I couldn't quite decipher. But he held out his arm with the patient ID band, and I figured he needed a visual confirmation that we really were done with the "hos-pal". 

I asked him if he wanted it off, as well as the cotton on the inside of his elbow. He said yes. He flinched as I removed the surgical tape, gently as I could with lotion on my fingertips. When it was off, miraculously, one side of his mouth curled up to a half-smile. "Thanks help, Mom" his voice cracked.

That was all I needed. I let out an exaggerated exhale for both of us. 

I know Hayden is so much stronger than I'll ever be.

Saturday, July 16, 2011

an excerpt

A note arrived in the mail today from Hayden's preschool teacher. 

That particular program-- the unequivocal fantastic preschool program-- has quite unfortunately (to say the least) been canceled. Due to state budget cuts this heaven-sent group that H has been privileged to be a part of, is being relocated to a different school.

The news was devastating, but for us, the timing pure luck. Hayden has been a part of that program for as long as he possibly could, and either way, officialy aged-out at the conclusion of the 2010-2011 school year. 

However, an unforeseen blessing has come to be, as a result. A miracle, really. The preschool teacher is being moved to kindergarten. So for the 2011-2012 school year, H will spend part of his day in her class (the other part, in a classroom more appropriate for his academic needs).

As I was saying, a note arrived in the mail today from that teacher. An excerpt from the frame-worthy card reads,
"Hi Hayden.... My gratitude goes beyond words that can be expressed. Equally, you have touched my heart with your precious contagious smile and laughter. I can't wait to continue admiring all your growth and display of learning."

Her closing sentiment includes another thank you. SHE'S thanking HIM. 

When the right people fall into the right profession, it makes life even more exquisite for everyone around them. 

(Which is more than I can say for some of the staff at the hospitals today-- yes, plural.) 

Hayden had a bit of a traumatic day today. The sensitivity of the situation is still too fresh for me to write about it coherently. 
Therefore in a weird therapeutic sort-of-way, I am choosing to close my day by focusing on the stunning gift of the good people, who help outweigh the bad people. 

Bless them in all of their brilliance.

Wednesday, July 13, 2011

wait, there's more...

When I picked H up from daycare, his teacher said he wanted to sit on the toilet after water play when they were changing him into dry clothes. 
She said he sat there for quite a while and didn't want to get up (not myyy kid).

So I told H I was very proud of him. And since Dan was playing golf after work anyway, when we got in the car I asked him what he wanted for dinner. 

I suggested "crust" (pizza). I could tell he was quite happy about this but tried to act nonchalant. 

I placed the order while we were at a traffic light, and they said about 45 minutes (we'd be home in 10). 

60 Seconds later I'm approaching the shopping center where there's a drive-thru, and Hayden starts yelling, "Gonalds! Gonalds!" 

I told him that we didn't need to stop at McDonalds, because I just ordered the crust.

"Peeeeease! Peeeeease!" he begged.

About an hour and change later after he had consumed a 6-piece kids meal and about 1 1/2 slices of pizza, there was plenty of grease and tomato sauce to clean off of his hands and face. (Luckily he has his father's metabolism.)

While I was practically bathing him with wipes, I said, "Wow-- you had a big, huge dinner! A very special dinner! Do you remember why? What did you do that I am so proud of you?"

He leaned into me, wrapped his arms around my neck and happily exclaimed, "Potty!"

hope doesn't have rules

Yesterday H told me when he needed to be changed. Just once, not every time he needed to be changed, but the time it bothered him enough that he wanted to be cleaned up I suppose.

He walked over to me and said, "eeew! stinks!" Then he grabbed his nose and said, "poop!" 

Well, he was correct and I praised him for telling me it was time. 

He repeated back to me while I was cleaning him up, "You proud me?" And I smiled as I lowered my face to his, and then kissed him on his forehead and anywhere else that his hands weren't blocking. 

So after his babysitter left, when he was begging me to take him to DD, I agreed. 

The people who work there know him and before we even ordered he was handed a glazed munchkin. Then I asked for a glazed chocolate doughnut (a very recent, new favorite that surprised me and Dan). 

In the time it took me to order a medium iced decaf with milk and two splenda, he had eaten half and accidentally dropped the other one on the floor.

Of course the man behind the counter gave him a new one, so I told him to keep the change when we paid. 

I silently made a wish on my iced coffee that Hayden alerting me to the fact that he needed to be changed, would not be an isolated incident.

Then as we were walking to my truck-- this child, who typically refuses to drink anything but water-- stopped and asked for a sip!   
Granted I forgot his sippy cup, and he may have been THAT thirsty, but don't ruin my wish.

Here's to hoping...

Monday, July 11, 2011


In recent weeks, bedtime routine involves two new patterns. First, when Dan & I tell H we love him, we're trying to get him to say it back. Occasionally he will when we remind him, but usually we'll get another "peace out" from him. Or we'll say, "love you," and in precisely the same tone he'll answer, "love me!"

The other new pattern is that he wants me to keep him company when he's (supposed to be) falling asleep. 

He usually gestures for me to lay on the right side, and he'll lay... or sit up... or stand... or jump... or squirm... or kick... on the left side of the bed. 

I always have my eyes closed in an attempt to encourage him to do the same (albeit unsuccessful). But I listen to his conversations as he typically pretends to be talking on the phone. Even when he's so tired that he's yawning through his own stories. 

When he returned home from morning program at summer school today, and finished lunch, within about an hour he started to look exhausted. 

I had a little more work to do so I tossed him a blanket and his monkey pillow pet, and suggested he take a nap. When I finished, he was joined by three bears, two standard pillows, a pile of his little blankies (mostly miscellaneous pieces of fabric he likes to cuddle with), and his other pillow pet-- the dog.

I asked him if he wanted me to take a nap next to him, and he happily scrunched (as Dan & I call it). Scrunching is when he's very excited and anxious (but not in a hyper way), and he sort of channels his energy in his two clasped hands beneath his face. A teacher at the daycare once offered a funny description when she said, "he looked like he was scheming" (upon noticing the DD munchkins that another child brought in for their birthday).

When I was comfortably positioned on the floor next to him, he said, "Best Mom!" 
And I said my line, "You're the best kid!"

And then, for the first time in his life (and mine) he voluntarily offered, "Yuv you!" 

Today Hayden lost his other big front tooth when we were play-wrestling. It fell out on its own, and I texted every member of my family with the good news! (Compared to the dramatic scenario I blogged about at my niece's 1st birthday party.) 

But that is now secondary to the real reason why I'll always remember July 11th of 2011.

Sunday, July 10, 2011

part 2: if it's his idea, it's a good idea

In a shopping bag in my bedroom, there are some leftover teacher gifts that I gave to Hayden's team as year-end thank you presents. 

Hayden brought me one of these lovely gifts when I was using the bathroom earlier.

His father held his applause until I opened the door and then cheered, "Good job, Cara!" He reinforced his praise by asking Hayden if we was proud of mommy. 

Oh my.

if it's his idea, it's a good idea

This morning, Hayden noticed a bag behind my nightstand. It has been there for quite some time, but for some reason he first noticed it today. 

This is the bag that "potty prizes" are in. I allowed him to be curious and look in it. He asked me about it, and I explained (as I have so many times before) that he gets one present when he sits on the toilet. But I didn't ask him to.

On his own terms, he went into his bathroom. He walked around and started talking about laundry, and the shower, and taking a bath, and anything else he could think of. Then, he sat on the toilet with his shorts still pulled up. 

Eventually he sat the correct way, and he wanted his prize while he was there. So with two anxious hands and one very big smile, he unwrapped a cars 3-pack.

Dan called on his way home from golf and said he was stopping for coffee. I told him that H sat on the toilet this morning, so he picked up an edible trophy (of sorts) for him.

Hayden was in his glory. I don't know how he fit that in after eating a spinach and cheese omelette, 6 fish sticks (don't ask), and 2 bags of granola bites this morning... but if it's an important enough prize such as a sacred glazed chocolate doughnut, he finds room I guess.

Friday, July 8, 2011

If the doctor's word is golden, the parent's knowledge is the rare diamond

I posted part of my last blog on the NFXF site in recognition and participation of, Awareness Day later this month. Titled: "Mom, Gad, and Hayden"

I was reading many of the other posts, and not that I need a reminder-- quite the contrary-- I can't say enough how thankful I am that H was diagnosed when he was. 

We began voicing concern to the pediatrician when Hayden was about 9 months old. The diagnosis did not come until 17 months of age. At the time, this angered us because we felt an extra 6+ months of services would have crucial at that stage. (He has a different pediatrician now.)

But we soon learned that the average age of diagnosis is 36 months-- so comparatively, we were at least thankful for that much. 

I empathize with the parents and caregivers who did not have any definitive answers until their baby was a young child. From what I read, it seems as if many of them are still constantly progressing and I pray that continues. 

Know that YOUR word is invaluable and you are all warriors! Every single one of you.

Wednesday, July 6, 2011

a day in the life

Even though I am the one going through the routine of the day, I often feel as if I'm looking in from the outside. 

There is this 35 year old woman, whose face and skin may appear younger than that, but overall she also looks like someone who could take better care of herself. (Not to mention her truck.) But her son never leaves the house looking anything less than a ten, and his backpack will always have everything he needs for the day. And maybe an extra one of this or that, just in case. 

She is dropping this handsome child off at school. The students are waiting in the front with the teacher and Aides, until everyone is present so they can walk to the classroom together. A few of the students in his program who happen to be paying attention, turn and greet him with enthusiasm. One places a hand on his shoulder, and another says, "Hi, Hayden!" excitedly, closer to his face than is necessary. 

The woman smiles at how happy they are to see him. She yells goodbye to him and says, "have a good day!" 
"Grandma will be there when you get home," she reminds him, "and then I'll see you later. I'll pick you up from daycare."
He says, "Bye, Mom!" or "Peace Out, Mom!" -- usually without actually turning around.

He has come such a long way-- when he started school a few years ago the separation anxiety was unbearable. Real tears that would escalate into borderline-choking, and the teacher would usually have to pick him up and carry him inside. The woman would drive away crying. 

But today she looks at the sweet, friendly kids welcoming him. They are all part of the same special ed program at the public school. They have various developmental delays-- none of them with the same diagnosis as Hayden, but all of them with something. 

The very first day the woman dropped him off at school back in 2008, she was not prepared when she saw the other children in the class. She hadn't thought about what might be different. One little boy found comfort in licking his right sleeve; he would be instructed not to, but he'd continue anyway. Another child seemed underdeveloped for her height and her uneven hips only allowed her a slow walking pace. One foot dragged a little bit. Another little girl was in a wheelchair. She had a trach tube, and Hayden's mom noticed her bottom lip was quivering. Even though it was quite warm out, she asked the nurse accompanying this little girl if she was cold. One of the teachers answered that she would be ok, she was just a little bit upset. "You won't hear a peep from her, but that's how she cries," another Aide added. 

The woman had to swallow back tears, and immediately thought of the little girl's mom. How she coached herself to ever be brave enough to put this fragile child on a bus to school. Even though she had a nurse with her.

Three years later, here the woman was dropping her son off and again there was another little girl who caught her eye. She looked up to see who Hayden's mom was, and his mother forced a smile at the young girl. But inside she was taken by surprise at the disproportionate features on this child's face. The woman was immediately angry at herself. 

The only other children at the school during summer, are incoming Kindergarteners who are dropped off every day for a ten-day safety program. Hayden is eligible to participate, but it is a community program so the school has no obligation to provide him the necessary Aide. Each child's attendance is voluntary and paid for by the parent(s) or guardian(s), not the school. 

The woman's mind gets stuck for a moment, mourning what could have been for her now 6-year-old if he was typical. He would be able to read, write, and count on the same level as his peers. He would be a regular first-grader... with normal toileting skills. 

But her happy child doesn't know life any other way, and he is not mourning anything. Rather, he is enjoying everything. 

That evening while the woman is preparing dinner, Hayden wants to help. He enters the room carrying half of the stuff from his play kitchen, the sedar plate from his Passover set, and dressed the part wearing his chef jacket from an old Halloween costume. Unable to locate the chef hat, his revised costume looked more like Florence Nightingale as his head was decorated with the matzoh cover from the aforementioned set.

The woman began giggling uncontrollably. Hayden began to laugh with her. He looked like the absolute weirdest, most odd, unique, silliest, and beyond beautifully adorable jewish-nurse-chef she would ever see in her entire life. 

She tried to capture the memory on camera but he turned his head every time it clicked. She tried once more with her phone, and then decided to join him instead. Together they grilled a delicious (yet non-kosher) wooden hamburger with a piece of plastic bacon.

A perfectly typical 6-year-old thing to do, except Hayden's version was more creative.

Sunday, July 3, 2011

icing on the tooth

My younger niece (my sister's daughter) is celebrating her first birthday this week. The milestone is actually the same day as her daddy's birthday :-D

So they had a party-- more like a mini casual reception-- yesterday. As my grandmother said-- (my 90 year old grandmother who scheduled a spontaneous trip to NJ so as to not miss her great granddaugther's first birthday celebration--) "it felt like someone rented a park for the day."

My brother-in-law has two green thumbs and managed to turn a woodsy yard into a landscaped garden that is nothing short of enchanting.

The celebration was not-too-themed, and nothing headache-provoking for the adults. Just bright and colorful and sunny, with just the right amount of fun (because, you know, there is such a thing as too much). 

Near the middle of the celebration a young musician arrived to play songs and instruments with the kids. We were gathered in the comfortable, yet beautiful high-ceiling living room with its two-story arched-top windows as he began with a guitar demonstration. I looked over at H and his face carried an odd expression. His mouth was moving as if there was a morsel of food in there, only I knew there wasn't. Then he stopped, the corners of his lips started to fall, and he looked like he was going to get sick. 

Both of his front teeth have been loose, but one significantly more so than the other because the adult tooth is already working its way down. Yesterday, at that moment, he began to feel it enough that it bothered him. (The day before it had been bleeding at one point, so we knew it was really ready to come out.) 

He became very upset, very quickly. As Dan and I sat in front of, and beside him, he kept taking Dan's finger and putting it in his mouth. He was pleading, "pleeease..." But he could not tolerate the sensation of Dan trying to get the tooth out. He was so conflicted between wanting the dangling thing removed already, but not being able to withstand it. He was simply in hysterics. It was heart-breaking. 

We took him away from the guests, downstairs to the couch in the basement. I asked him if he recognized it, as it used to be in our house. He either didn't or couldn't care less (not that I blame him, but sometimes changing the subject has a calming effect). We went through a good twenty minutes of my father holding him, and Dan trying to get the tooth out. I periodically walked away and went upstairs for more paper towel. Or water. I could barely tolerate the scene of his desperation and uncomfortableness. Finally I settled upstairs and decided to stay there. By the time the drama was over with, it was a half hour, & a half a gallon of tears, & a half a roll of paper towel later. The basement door opened and there stood H with a very unsure almost-smile on his sweet, tear-streaked face. 

We praised him so much and congratulated him to the point that he almost got upset again (I suppose unable to appropriately process all the attention).

Within minutes of re-joining the party, it was cake time. My niece's
personality just seems so developed for someone who is only in her first year. When I am watching what she's getting herself into, her delicious + chubby + magnificent + sweet + buddha-like features are captivating and distracting.

True to tradition, they presented her with her very own cake to plunge into. When she was done covering herself in dessert, her eyes appeared as if they were floating in her head from a sugary induced coma-like state of awake. It was absolutely fantastic and beyond adorable.

Dan's parents were there, too, and my mother-in-law and I were remembering Hayden's (at the time, confusing) reaction to his 1st birthday cake. Of course it was five years ago that he turned one, but I still recall how stressed and upset he was when we presented him with his own dessert to enjoy. At the time we did not understand, of course, and a part of me was disappointed. Things like "sensory processing disorder" were not yet in our vocabulary.

So yesterday, for me, it was a particularly precious experience watching my niece explore that cake almost as if she was putting on a show.

Hayden curiously, and enthusiastically, stood in front of her highchair during the dessert performance. Then he did something that Dan and I could not take our eyes off of. He actually stuck his finger in the cake, and it landed on some blue icing. He touched the sticky substance to his lips. Not only did he not throw up... there was not even a gag. We were FLOORED. 

I caught a picture of the two of them with the icing on their faces and it makes my eyes well up. 

On the ride home, the busy day + the exhaustion from the tooth drama, had him half-asleep within minutes. As we merged onto the first highway, a hip-hop song that Dan sometimes sings to him came on the radio. I heard clapping... So I turn around and Hayden, with his head still completely to the side and his eye lids barely able to stay open, has a near-smile on his face. His hands were unable to resist acknowledging the beat. He clapped a few times and then finished passing out ♥