Salvation In Smiles

Last month's post ("Your Daughter Should Be A Marijuana Farmer") prompted many similar responses. There were folks who commended me for keeping my sense of humor amidst our particularly frustrating situation, and others who asked how I possibly could laugh my way through it. The answer? Practice.

This special needs parenting journey has been fraught with formidable foes. As those who read With Angel's Wings know, first I was faced with the challenge of Hannah's severe medical instability. There was also a test of confidence in my parenting ability, as I felt the weight of judgmental stares and whispers, specifically before Emily's diagnosis of autism. Looming over both of those was my battle with clinical depression. There have been smaller skirmishes over the years, as well - special education scuffles and state services strife (as chronicled in last month's post).

My most recent adversary, however, is burn-out. I have been drawing up meds and priming g-tube feeding bags every day for 20 years now. I've been changing diapers every day for 23 years. Alone, those tasks don't sound like much, but - trust me - after two decades, when coupled with all the other special needs tasks (providing all personal care, IEP meetings, insurance and government paperwork, doctors' appointments, etc.) I'm tired. I mean... Bone. Tired. However - as any parent of a medically fragile child will likely understand - I can't dwell on my woes, because every frustrated, irritated, fatigued, or resentful thought about what is expected of me is countered with one crushing truth. The only way out of doing these chores for the rest of my life is to lose my daughter. How can I possibly gripe about daily menial chores when the alternative is my child's death? And that's the never-ending cycle of fatigue/resentment/guilt that defines caregiver burn-out.

Fortunately, I have a secret weapon. For 20 years now (yes, that infamous night in the Cow Room, as described in With Angel's Wings was 20 years ago!), I have have been gifted with daily humor. My dear husband has provided a never-ending stream of reasons and ways to find joy in each and every day. Whether it's one of his creations...

...like an email...

...or a comic...

...or his embodiment of a favorite video game character (like Frank from Dead Rising)...

...or a favorite sports hero (like Larry Bird).

Whether he's out in the wilds, stalking the mighty and elusive Christmas Tree...

...or braving the raging waters of Neal's Pond...

...gallivanting on his mighty steed...

...or out tearing up the roads on his hog.

Whether he's in touch with his inner warrior...

...his inner ninja...

...his inner cowboy...

...his inner diva...

...his inner crustacean...

...or...uh...his inner insect (?)...

He reminds me every day that there is always...ALWAYS...a reason to smile...

...and that this is an absolute truth to never be forgotten.

Thank you, Hon, for 20 years

of GREAT dances in the rain.

Your Daughter Should Be A Marijuana Farmer

This is Hannah's final year of high school. I've been emphatically encouraged by case managers, teachers, therapists, and parents to do whatever is needed to get Hannah onto something called the Basic Plus Waiver, so she'll receive the services she'll need once she's out of school. To be honest, I don't know much about it; all I know is that everyone says this is something Hannah needs. But - of course - there is a long waiting list. I've been told the best way to avoid spending years at the bottom of the wait list is to participate in a school-to-work program. Apparently, 100% of the kids who participate in this program (regardless of the level of their disability, by the way), are accepted onto the Basic Plus Waiver.

So now we get to the true ridiculousness of this whole situation. A reminder: Hannah has a rare genetic disorder, Wolf-Hirschorn Syndrome. She is non-verbal, non-ambulatory, incontinent, is exclusively G-tube fed, has severe gastro-intestinal reflux disorder (GERD), has a seizure disorder, and has the mental capacity of about a 6 to 9-month old. In order to get the services she needs (physical therapy, personal care hours, respite care, etc.), she needs to first GET A JOB.

Here are just a few of the many head-shaking, eye-rolling moments from our job-hunting journey thus far:

Quote from state case managers, jobs program managers, and teachers: Look, I know this doesn't seem to make much sense. Hannah won't need to work much - maybe just an hour per week. If you can just show you're willing to play the game, it should be enough to get her the waiver she needs.

***

In order for Hannah to participate in the jobs program, I had to sign her up to receive services from the Department of Vocational Rehabilitation (DVR). I had to fill out an application for her. I decided to be honest with my answers. One question asked Hannah to list her working skills. I wrote "none". Another asked about why she was interested in working. I wrote that she has no interest at all in working - that we were only going through the motions because this is what we were told we had to do in order to receive services from the state.

A week later I received a message from the director of the school-to-work program. He was in a panic after having been notified by the DVR that Hannah "may not have any interest in working." I called him back, thinking we may very well get kicked out of the program. He didn't even ask me whether we wanted to stay in the program or not. Upon me saying, "Hi, I'm calling in regards to Hannah," he just said, "Oh, I'm so happy to hear that you want to continue with the program. I'll notify the DVR right away."

What ran through my mind: Why weren't we just kicked out of the program? I didn't even have to defend myself at all! Oh wait - if Hannah is kicked out, this school-to-work program doesn't get the state funding Hannah would have generated. They don't really care if we want to be in the program; they just want to be assured that funding.

***

A few weeks later I had to go to a mandatory intake interview at the DVR. The case manager said the interview would take approximately an hour and a half, and Hannah was required to attend.

Me: Why? She can't contribute anything, and she'll self-abuse if she's forced to sit in an office that long. She'll punch herself in the head to the point of bruising.

Case Manager: I'm sorry, but Hannah will need to attend.

Me: [Sigh] Fine. The last time I was there I didn't see your handicap-accessible entrance. Where is it?

Case Manager: ...Ummm...Off to the side of the building?

Me: I don't think so; I looked.

Case Manager: Hold on just a minute; I'll go check.

[A few minutes pass]

Case Manager: Um...you know what? I think it'll be fine if Hannah doesn't attend.

***

Another thing I had to do to for Hannah to participate in the jobs program was to sign her up for ACCESS bus service. That's a division of the metro bus services that provides door-to-door rides for disabled individuals. First I had to fill out a 4 or 5-page questionnaire, including doctors' signatures, regarding the level of Hannah's disability. Then Hannah had to be evaluated by a professional at a hospital on the other side of Seattle [presumably because I - and the doctor - may have lied about her level of disability on the forms].

Scheduler: We'll need Hannah to come to Harborview Hospital for an evaluation. We will provide transportation with an ACCESS bus, free of charge, and her personal care attendant will be permitted to ride free of charge, as well. Normally the evaluation lasts an hour, but we'll just be measuring the size and weight of Hannah and her wheelchair to ensure she's safe to ride the ACCESS bus, so it will only be a half-hour appointment.

Me: So let me get this straight. Hannah will ride on an ACCESS bus all the way across Seattle to Harborview Hospital...so it can be determined if she is safe to ride on the ACCESS bus?

Scheduler: Yes...it's just how it's done.

***

Me: So...if and when Hannah gets a job, who will ride with her on the ACCESS bus? She can't ride alone.

Jobs Coach: A personal care attendant.

Me: And who hires and pays the personal care attendant?

Jobs Coach: You.

Me: Huh...this could get expensive at $20 per hour. ...And I'd need to pay that personal care attendant to care for Hannah the entire time she's at work? The personal care attendant would be responsible for, say...changing a blow-out diaper or handling the situation if she has a seizure?

Jobs Coach: That's correct.

Me: And where will the diaper changes occur? It's not like most places of business offer a changing table large enough for a 50-pound, 20-year-old.

Jobs Coach: Um...we'll be working out the details as we go along...

***

And finally...

We had a brainstorming meeting, so we could best determine an appropriate job for Hannah. I looked around the room at the 8 individuals [who were all paid by our tax dollars in one capacity or another]...sitting there for over an hour, discussing what job would be best for our "potential employee".

Group Leader: What is Hannah best at?

Me: Sitting. She can sit independently.

Group Leader: What does she like to do best?

Me: Sit in the sun out on our deck.

Classroom aide: She also likes to splash her hand in water.

Group Leader: So she'd do best to work outdoors, ...possibly with water...

Jobs Program Representative [spoken with a straight face, in all seriousness]: I've got it. I think we should look into Hannah working at a recreational marijuana growing facility. She could water the plants.

Meeting adjourned.

The state's apparent wish...

Hannah's wish...

Hannah:
"Come on, state of Washington...SERIOUSLY?"

Gymnast or Gym Rat?

This month marks the beginning of Maddie's second competitive gymnastics season. Last year was very eye-opening for me, leading to a conclusion: I am thankful to have a gym rat rather than a gymnast.

My observations began at her first meet last year. When watching the competitors, I noticed that some were considerably more refined in their performance than my daughter. I wondered if it was just that many of these girls were in their second year of competition, or if it had more to do with quality of training. Then I watched Maddie. I saw her beam with pride and joy in her own performance. That's all that mattered, so I let it go.

Then my "former-nurse ears" perked up to the conversation going on around me. Parents from other gyms were trading stories about the overuse injuries their girls were sustaining and recovering from. This was a level 3 gymnastics meet, where the girls are generally 5 to 8 years old. While I expected to see an occasional injury in [much] older gymnasts, I never thought I'd hear about injuries at this level! And overuse?! I scanned the gymnasts again, and - sure enough - I noticed a number of taped ankles and wrists and even a few girls sitting off to the side, unable to compete. I figured if more stringent training resulted in smoother performances - but also included increased risk for overuse injury...I'd happily take the more relaxed training any day.

Observations continued at our big travel meet for the year. We went to San Diego and competed against girls from around the country, as well as a few international teams. I was amazed at the level of performance from some of the gyms. Many of the girls seemed to be well on their way to the Olympics! Then I looked more closely. One girl (who looked no more than 6 years old) was berated by her coach for not lifting her leg high enough at one point in the floor exercise. This happened about 3 feet away from me - plenty close enough to see tears welling in the girl's eyes as the coach scolded her. She immediately had to go out and compete after the exchange. I feared her emotional state would effect her performance, but I breathed a sigh of relief when she finished an absolutely beautiful routine. Then I was disgusted when she walked off the floor. There was no high-five for her, no "Great job!". Nothing. I wanted to run out and hug the poor girl.

I heard more horror stories from our coach, featuring one in which she overheard a coach pitting one gymnast against another. The offending coach had pulled the two girls to the side and said, "Okay...this is it. There is only one spot open on the level 4 team for next year. Which of you is going to prove to me you're worthy of that spot, and which of you is going to have to go through another whole year of level 3?" Meanwhile, our girls (some of who were cast out of other gyms for not having the right body type or ability level) were laughing, giving high-five's, and yelling words of encouragement to one another. Maddie ended up nowhere near the podium at the end of the night. Her scores didn't remotely resemble those who walked away with the trophies. That was fine with me. She was off in the corner during the awards ceremony...playing with her teammates - her friends.

At another meet I struck up conversation with a mom from another gym. She mentioned her daughter would be quitting at the end of the season. I asked why, and she quickly said, "Burnout! The practices are just too much and she has had enough." I learned that her daughter (a 7-year-old) had 4-hour practices 3 days per week. Maddie had 3-hour practices, 2 days per week. No wonder some of these other gymnasts had such clean performances; they were practicing nearly twice as much! I was thankful for our relaxed practice schedule. It allowed for Maddie's weekly tutoring sessions, piano lessons, and one night of rest per week!

By the end of the season Maddie's skills had changed immensely - they had greatly improved (even earning her a highest all-around score in her last meet and a trip to the top of the podium!). What hadn't changed was her relationship with her teammates or her love for the gym. Her favorite days of the week remain her practice days, and after practice she still begs to stay for "free gym".

We no longer live in an age where parents kick their kids out of the house by 10 A.M. to "go play" and allow them back in at dinnertime. Now you run the risk of getting authorities called on you for neglect if you so much as allow your kid to walk home from school alone. So we rely on organized activities for our kids to get exercise and to form the bonds and relationships they would have when playing "out and about" in years past. All too often, however, parents seem to see these sports teams as lottery tickets rather than developmental tools. Even if their heads aren't swimming with visions of pro sports teams or the Olympics, they're often intoxicated with dreams of college scholarships. My kid does gymnastics, but she's not a gymnast; she's a gym rat. And I'd have it no other way. She improves skills, she stays healthy, she makes friends, she builds confidence...and she has fun. I'm as concerned about the expense of college as any parent. But if I'm going to enter the scholarship lottery, I'd rather roll the dice on academic possibilities, not athletic. Let sport be for fun. Let her be a gym rat!

And because she can't get enough at the gym...

What "watching TV" has become...

What happens when there's more than 3 days between practices...

My lovely little gym rat!

What The Cat Dragged In

Text Sequence:

Tuesday 5:57 PM

Me:  How's your day going?

5:57 PM

Daniel: Not bad. You?

5:59 PM

Me: I'm at gymnastics with Maddie.

6:00 PM

Me: James just called for the first time since I allowed him to babysit Hannah, so I was nervous when "home" popped up on the phone screen (visions of burning house firmly in mind).

6:01 PM

Me: He said, "Mommy?!"; panic lacing his voice

6:02 PM

Me: "WHAT?!" I said, standing and preparing to run to the car

6:02 PM

Me: "I have... Well... In my... um... in my...

6:02 PM

Me: At this point I'm breaking into a cold sweat as I make a mad dash out the gym doors.

6:03 PM

Me: He finally spits it out, "...In my hand right now I have the SMALLEST bunny I've ever seen...and he's ALIVE!"

6:03 PM

Me: I proceeded to defuse the situation. Parenting win.

6:04 PM

Me: I had assumed it was a rat the cat dragged in this morning, but maybe it was this rabbit. Awfully big coincidence, otherwise.

6:05 PM

Me: Thinking back, it WAS super loud for a rat...

7:52 PM

I pull into our driveway after gymnastics and prepare myself for what I know I'm sure to find (having decided there's about a 2.5% chance James released the rabbit as I instructed). I walk into the living room to find James on the floor next to a square Tupperware container sitting on a heating pad. In the Tupperware container is a paper towel, random fruits and vegetables pulled from the fridge, and a baby rabbit about the size of a hamster. I open my mouth to explain why he can't keep this wild animal. Anticipating my demand to set the bunny free, James scrambles to present internet evidence that we'll essentially be signing the animal's death warrant if we set him free without knowing where his nest is. Defense lawyers around the world would covet his level of enthusiastic persuasion.

7:53 PM

Maddie backs James up, and I am drilled with the intensity of two sets of professional-grade puppy-dog eyes. I begrudgingly agree to keep the bunny in the house until we can get him to the vet the next day for advice on a plan of action.

Wednesday 5:23 AM

James bounds into our bedroom to announce excitedly that "Fluffy" is still alive.

10:24 AM

I load James, Maddie, and Fluffy into the car and head to the vet's office.

10:26 AM

We get stuck in road construction traffic. I try to decide what I can afford to cross off my "to-do list" for the day, since I clearly won't have the time I anticipated to get my daily chores done.

10:48 AM

We arrive at the vet's office.

10:49 AM

I load James, Maddie, and Fluffy back into the car to head to some rabbit rescue center we apparently have in the area. With a shake of my head and a sigh, I mentally rip up my to-do list, giving up on any hope that I'll get anything accomplished for the day.

11:12 AM

I get tongue-lashed by a militant rabbit rescue "expert" for apparently doing everything wrong. She sells me some specialized formula for $4.95 and offers instruction for feeding, then informs me that even if I had done everything right the rabbit would have had - at best - a 30% chance of survival. She wishes us luck.

12:04 PM

I transfer the bunny to the ICU (a.k.a the guest room) and rush to get a heating pad under him, as his body temperature has dropped too low (according to Militant Rabbit Lady).

1:45 PM

I attempt a feeding with one of Hannah's 1cc syringes. Fluffy appears uninterested.

2:53 PM

James begs me to attempt another feeding so he can see that Fluffy is okay.

2:55 PM

And begs.

2:56 PM

And begs.

2:57 PM

We enter the ICU for another feeding attempt. Fluffy is pronounced dead.

3:05 PM

A hastily-prepared funeral service commences. The kids share their fondest memories of Fluffy.

3:07 PM

Fluffy is laid to rest in the garden where the chives we planted last spring didn't grow. We all walk back to the house with heads bowed in solemn silence.

3:17 PM

James and Maddie soothe their deeply-mourning souls with a cleansing game of Minecraft.

What I was up against:

Fluffy

"Uh...Sh*t Just Got Real"

This month Hannah turns twenty. Twenty! For those who read the book, who would have guessed? Another year of survival is always quite an accomplishment for Hannah, and a year that has included more good days than bad is especially worthy of celebration. I'm not sure how to "classify" this past year. It included the biggest "close call" in years.

Her most recent brush with death before this year was when she was twelve. She suffered a serious respiratory infection. The illness, itself, wasn't any worse than any other she had battled. The difference that particular year was that Hannah appeared to have given up. She put no effort into her cough, so her lungs weren't clearing. She had no more "spark", no "spunk" to knock out what ailed her. Everyone saw the change. Doctors adjusted her patient status to palliative care (essentially "one step up" from hospice care), and a Make-A-Wish vacation was even coordinated. We prepared the proper paperwork for advanced directives (also referred to as "Do Not Resuscitate orders", or "DNR orders"). Hannah had enjoyed more good years than bad at that point, and we didn't want to "ruin it" with a lot of heroic measures that would draw out any suffering. Discussion of what medical intervention we wanted from that point forward (and what we would refuse) was emotional, difficult, and fraught with second-guessing and conflicted feelings. We ultimately decided to allow IV access and cardiac monitoring when necessary, but no intubation/mechanical ventilation. Antibiotic use would be determined on a case by case basis.

Hannah ended up pulling through that particular illness. Dr. Fieldman further helped her out with a stroke of genius. He suggested a small dose of Prozac. I couldn't understand how that would help her, but it seemed benign enough, so I acquiesced. It was absolutely life-changing. About two weeks after the first dose, Hannah's teacher called me in the middle of the day. "She's back!" she excitedly exclaimed, "The sparkle is back in her eye, the smile is back on her face...she's Hannah again!" Hannah's apparent "giving up on life" had been a simple issue of depression. Prozac returned her pluck and we continued on for 7 more relatively smooth years.

Hannah's advanced directives didn't really come to mind again until last December, when she was hit with another brutal, flu-like illness. Daniel and I had multiple discussions about the severity of her illness and our plan of action. We ultimately decided to leave the DNR orders in place. I tried to prepare myself for what it all might mean for Hannah - imagining hospice nurses milling around her bed and a steady stream of IV morphine to keep her comfortable. As it turned out, Hannah (once again) demonstrated her strength (and stubbornness), and beat the illness. I breathed a huge sigh of relief, once again setting aside uncomfortable thoughts of advanced directives.

A few weeks later my attention had completely shifted to the challenges James was presenting, both at home and at school. July's blog entry (Expectations, Misconceptions, and Blindsides) mentioned a specific day that featured him throwing a log through our shed window. That was on a Saturday. On the following Monday I was on our roof, taking down our Christmas lights, running through my mind the conversation I would have with James when he got home from school. My cell phone rang. The high school showed up on the screen. Never a good sign.

"Hello?"

"Hi, it's Paul from the medically fragile room. We were just loading Hannah onto the bus when she started seizing. It's a pretty severe one this time. We've called 911; the paramedics are on the way."

I was already half-way down the ladder. "I'll be there in a minute." I tried to breathe through my anxiety as I slammed the car into drive and zipped out of the driveway. The school had called me multiple times about seizures. It was usually a case of a small seizure or strange behavior they thought might be a seizure, and it was almost always resolved by the time I got there. They hadn't called 911 in years, but I was determined to remain optimistic; maybe it was a new staff member who panicked over something harmless.

One glance at the scene as I pulled into the school parking lot obliterated my optimism. Hannah was on a gurney next to an ambulance, surrounded by paramedics. Teachers and staff were standing huddled off to the side, white-faced and wide-eyed. Sarah was pale, blue-lipped, and jerking violently. I immediately had flashbacks to her grand mal seizures of infancy. I hadn't seen a seizure this bad in well over a decade. I did my best to shake off my emotional response and switched into crisis mode. I gave the paramedics permission to administer a rescue med, then went to the teachers for a more complete accounting of what led to Hannah's current status. As her teacher finished his report, I was on the phone, calling Daniel.

"Hey, hon. I'm at the school with Hannah. She's seizing and it's a big one. Paramedics are working on her now. I hope you don't have any critical work meetings scheduled for the afternoon. I need you to call Maddie's school and tell them she'll need to go to their after-care program for about an hour after school. If you go to the barn to pick Em up from her volunteering gig at 4, you can swing by Maddy's school on your way back, around 4:30. That should give you enough time to get her home to change into her leotard and grab her snack bag. She needs to be at gymnastics at 5. I'll call Mary Beth and cancel today's tutoring session for James. Emily can stay home with James while you're at the gym with Maddie. Let Em know there's ground beef in the fridge for spaghetti. Tell her to set a timer to remind her to start cooking it at 7:45 so it'll be ready when you get home from gymnastics around 8:15. I'll check back in with you when I can. Love you."

"On it. Man...it's been a long time since this has happened. Give Hannah a hug for me. Love you, too."

I checked back in with the paramedics. As I feared, the rescue med had done nothing to slow the seizure down. They were preparing a second dose. I held Hannah's hand, offering her words of encouragement that were more for me than her. The second dose wasn't touching the seizure either...but her respiratory status was plummeting. The paramedics were placing an IV; I stepped away for a minute to make the call to cancel tutoring. When I returned, the paramedics were grabbing more supplies and one said, "She's really struggling to breathe here and her respiratory rate has dropped dangerously low. We're going to intubate."

"Wait! ...You um...you can't! ...We have DNR orders. Oh, God...we...we have DNR orders in place..."

"Do you have a copy with you?"

"No. I was...um...I was on the roof when I got the call. I didn't think to go into the house to grab her paperwork."

"Well...if we can't intubate, we can't do anything else for her here. Let's get her over to the hospital." They began preparing to move her into the ambulance.

I was back on the phone with shaking hands. "Hon? ...Uh...Shit just got real... They need to intubate and I had to tell them to stop. I wasn't ready for this today..."

"You want me over there? I can be there in a minute."

"No. Ummm...we're...we're headed out to the hospital, anyway. I just...I just... I don't know. I wasn't ready."

"You can tell them to go ahead and intubate."

"...No...I think we made the right decision...I just...this wasn't supposed to happen today."

"Right... I love you. Keep me posted. Keep breathing. Give her a kiss for me. It'll be okay. You're doing a good job, hon."

At the hospital the ER doc was able to administer a large dose of an IV seizure medication - one that (unlike the rescue meds the paramedics had used) had no respiratory side effects. We watched anxiously for her respiratory rate to rise, her heart rate to drop, her respiratory effort to calm down, and for the rhythmic jerking of her seizure to subside. Finally, about an hour after the seizure had begun, it stopped. She was out cold - exhausted and heavily medicated - but seizure free. Her respiratory status wasn't great, but it was improved - a good sign. Chest x-rays showed no obvious sign of an aspiration pneumonia - another good sign.

We stayed in the hospital overnight for observation. It was an overabundance of quiet, alone time for me to obsess over the "what if's", to second-guess (and third and fourth...) my decisions, and to empathize with anyone else who has ever been put in the gut-wrenching position of following through on DNR orders. I distracted myself with thoughts about how to handle James' recent over-the-top behavior. It was far from a restful night.

That was 7 months ago. Hannah has not had another large seizure since that afternoon in January. She's still recovering...or maybe irreparable damage was done; I'm not sure which. Before the seizure, I would say Hannah's cognitive ability was that of about a 9 to 12-month old. After the seizure, she has remained at an ability level more like a 3-month-old. She has lost most of her curiosity for her surroundings. I used to set her down in her La-Z-Boy chair and she'd slide to the floor and scoot on her bottom to the dog's water dish and dump it over, into the bathroom to check out the toilet, into the kitchen to pull down the recycling bin... Now she's quite content to just sit. And sit. And sit. She's not as expressive either. She's never been verbal, but she had a number of sounds we had learned to associate with various moods. Now there's essentially two. There's a happier coo, roughly resembling that of a dove. Then there's the less-than-happy coo - a dead ringer for the whine of the skeksis in The Dark Crystal. Most disturbing has been the absence of her laugh. A few weeks ago I asked Daniel if he remembered hearing Hannah laugh since the seizure. Neither of us could recall a single snicker since January. Miraculously - as if to offer me some peace of mind - the very next morning when I was changing Hannah's diaper, she gifted me with a very brief (but unmistakable) chuckle. I was able to get her to do it twice with tickling, then she was done. I haven't heard it again since (despite multiple attempts to get her to repeat it), but I'm hopeful we'll once again be gifted with her completely infectious belly-laugh someday soon.

So...we jump into Hannah's twenty-first year with hope to make back some ground we've lost, thankful for the good times she has enjoyed, and forever proud of her strength to endure the hard times of the past.

A Few Make-A-Wish Trip Memories...

The "Morning-After Hangover"
In the hospital, the day after her seizure

Our girl...what a trooper!!!