This Ain't No Freakin' Holland!

A few weeks ago I went to the gym for my Monday boot camp class and found my instructor wasn't there. The guy who was leading the class in her absence told me she had had her baby over the weekend. Innocently enough, I asked, "Oh, and mom and baby are doing well?" He seemed really uncomfortable and said, "Actually...I think there's some complications...some special needs." I said, "Oh, what's going on; do you know the diagnosis?" "I think maybe Down Syndrome," he said. "Oh," I said, "How is mom handling that? Have you talked with her?" "No," he said, "I...I just don't know what to say to her."

That exchange got me thinking about my "D-Day" (the day I got Hannah's diagnosis), and things people said to me as they learned about it. One person handed me a piece of paper with a short essay on it, titled "Welcome to Holland".

Welcome To Holland

It says having a baby is like planning a trip to Italy. You've waited your whole life for this, and you're extremely excited to experience all Italy has to offer.

As you exit the plane, though, the flight attendant announces, "Welcome to Holland!" At first you're confused and disappointed, because your dream had been to go to Italy. But...after time, you realize there is a lot of beauty in Holland, and while you will always mourn the fact that you didn't get to see Italy, you can enjoy a fabulous stay in Holland.

At the time, I couldn't even begin to see the beauty of "my Holland". In those early days of Hannah's heart failure, everything was so alien to me, it felt more like I had been transported to a different planet than any European destination. "Welcome to Mars" would have felt more appropriate. It was a long string of scary unknowns, and dire consequences were attached to every decision as we frantically attempted to navigate our way back to Earth.

Returning from the brink still didn't land us anywhere pleasant. I remember feeling a combination of anger and guilt as I read that essay. Broken marriage behind me, I was now a single mother with barely two nickles to rub together, constantly trying to stabilize Hannah as she suffered marathon seizure after marathon seizure, along with every nasty, horrible side effect brought on by a pharmacy worth of medications we were throwing at her in an attempt to get them under control. I thought, "This ain't no freakin' HOLLAND! This is...Chechnya. Am I a bad parent because I'm not seeing a whole lot of warm and fuzzy beauty in our situation?"

Now that I've had some time to reflect, I have a few thoughts on the matter. First, to say, "This is how life is when you have a special needs child" is lunacy. My son has been described as having "special needs" with his ADHD/dyslexia. While his diagnosis has definitely presented challenges, I can't compare it in any way to the challenges Hannah's genetic disorder has presented. That's not even to say there are different "levels" of special needs parenthood. Everything is relative. Green beans are just as much a vegetable as turnips, but that doesn't mean you're going to have the same experience when you eat them.

Second, to "sugar-coat" the situation is - in my opinion - doing a parent a grave disservice. For a long time I felt guilt over not seeing the beauty of "my Holland". I would hate for anyone else to feel guilt over emotions that are 100% natural and normal. Special needs parenting is not just different from typical parenting. It's more difficult. There IS an element of tragedy (albeit more for some than others). The very first tragedy you face is the death of the typical child you thought you were going to have. You have to be allowed time to mourn that loss. It is counterproductive and - in my opinion - disrespectful to dismiss the need for that mourning or to discount the difficultly of the challenges that likely lie ahead. That isn't to say that you're doomed to a life of misery as a special needs parent. I love my life. There have definitely been some dark, rainy days over the years, but the storms have been followed by sunshine that has offered some glorious rainbows. And just like any difficult journey, I've been afforded the opportunity to grow as a person. That's a true gift that I will always be thankful to my children for.

So, as I thought about my gym instructor's new reality and heard this guy saying, "I just don't know what to say to her," I wondered, "Well, what would I say to her now?" That's easy. "I'm here for you." That's what you say when someone is facing a daunting situation. That's what you say when there's nothing else you can say.

My Son, The Statistic

Not too long ago I heard about a study that found 100% of 14-year-old boys who had internet access in their bedrooms used it to search for porn.

Yep. 100%. I hadn't even heard of a study with such strong results before, but...really...not SO surprising when you think about it. Well, our son was 11 when I heard that. Time was short, so I took a deep breath, sat James and his best friend, Pugly, down, and explained (as age-appropriately as I could) that - while it might SEEM appealing - internet porn is a bad idea in the long run. They listened. I think James even HEARD some of my impassioned pleas. But, yeah...I don't even think the pug bought what I was selling.

Proactive measures were called for. James didn't have a computer in his room, but he had his Kindle with internet access. I shut the internet capability off. There. Done and done. ...Then I remembered that he has an iPod Touch...also with internet capability. So we instituted a "no-iPod-in-your-bedroom rule". Whew...dodged that one! Then last year (when he was 12) James and a friend from school got busted doing an online search for "boobs" at his friend's house. Annnndddd...that was the moment when the totality of the challenge before me really started to sink in.

My concerns were compounded by a seemingly unrelated development in my life. It was about that time I started to put effort into marketing my book. Facebook posts just weren't cutting it for spreading the word, so I decided to dip my toe into the Twittersphere. I had no idea what Twitter was, but I assumed it was essentially a 140-character Facebook. Oh, silly, naive me! Twitter is more like a flashy, Las Vegas-style, mega-ADHD Facebook with all filters shut off and some sort of shock-factor injector turned on. I was exposed to more porn in the first month on Twitter than I had seen in all the rest of my life. That's with me just reaching out to folks in the literary world, to promote my book (my memoir...about special needs kids). There was no need to "search" for porn on Twitter; it found me. And we're talking...like...EVERYTHING. I saw stuff you can imagine, stuff you can't imagine, stuff you look at twice, like, "Whaaaaat????" and a whole lotta stuff I really wanted to un-see. Then I began to think about a bunch of 14-year-old boys gathered around someone's smart phone at school, doing a Twitter search...

So here's what I've learned so far. You can put search blocks and safeguards on your home computer, but that doesn't block out sites like Twitter. You can pull all internet access out of the bedrooms and even password lock your home computer...but that doesn't limit internet access on the X Box, PlayStation, Wii, or the child's school-issued netbook. Even for the meanest parents on Earth like me, who haven't allowed cell phones yet, it doesn't limit access to friends' phones (or iPods, tablets, laptops, gaming systems, home computers...). Reality is, there's no protecting these kids from internet porn. Nope. We're forced to just TRUST the decision-making ability of our 12-14 year-old boys. Trust them.

So now my son is a statistic. What is a mom to do? Gone are the days when all a mother had to worry about was her son finding his father's stash of Playboy's. I miss those days. I'd much rather have a discussion about the objectification and air brushing he'd find in magazines than the bondage and bestiality he's likely to stumble upon on the net. This isn't the motherhood I signed up for; I deserve a raise...or I need to take up drinking, one or the other...

Gracias, Mexico...and Michael

We decided to try something a little different for Christmas this year. Instead of material gifts, we wanted to give the kids the gift of an experience. We also wanted to introduce them to a new culture, as they had never before traveled outside of the US. I specifically hoped their eyes would be opened to all they have to be thankful for here in the great Pacific Northwest. Living in the Seattle area, where the top employers are giants like Amazon, Microsoft, and Boeing, it can be a challenge to keep kids grounded. A phrase like "less fortunate" - in their eyes - can translate to someone who doesn't yet own the latest X Box game...or - worse, yet - some poor soul cursed with parents like us, who refuse to get them a cell phone.

Our trip was incredibly fun, educational, and memorable. We learned about local habitats and wildlife at Xel Ha and Xcaret. Xcaret included a fantastic show that featured Mexican history and culture. We also learned some of the fascinating and inspiring history of the ancient Mayans on a tour of Chichen Itza. There were lessons of the trip that were more...personalized, too. James, for instance, learned that if you come across something that looks like a small, yellow bell pepper while out for a walk, you probably shouldn't pick it and bite into it like you would an apple. It may very well be a golden sun habanero pepper. Another lesson - also learned by James - was that if you swallow a lot of ocean water when you're learning to snorkel, you probably shouldn't get out of the water and immediately gorge yourself on ice cream. It may very well turn into a large, embarrassing mess on the ground...and all over your favorite shirt.

I was thrilled at the number of stimulating and valuable discussions our experiences in Mexico inspired. For instance, the kids wondered about varying living standards around the world (when they saw Mexican houses [or lack thereof] in communities further away from the all-inclusive resorts of Cancun). They also wondered about differences in the policing of various countries (as we saw multiple policemen loaded in pick-up's, with the policemen resembling well-armed military companies on their way into battle). Beyond our valuable lessons learned, however, I feel inclined to thank all who played active roles in our fabulous experience.

A heartfelt thank you to Katy, for spending the holiday week with Hannah here at our home, so the rest of our family could travel. We've tried to travel with Hannah in the past, with disastrous results. With Hannah in Katy's very competent and loving hands, we were able to enjoy our adventure with complete confidence and peace of mind.

Thank you to all the Mexicans in the hospitality industry, like those who provided transportation to and from the airport, the the impeccable resort housekeeping team, the fun resort activities team, the talented resort chefs, and all at Xel Ha, Xcaret, and Chichen Itza who helped to make this such a memorable trip. Not only were you all incredibly professional and personable, but you patiently put up with our hack job on even the most simple phrases in your language...while you spoke and understood our language beautifully.

One of our biggest thank-you's, however, is reserved for a man named Michael. Our trip home included a layover in Dallas. Unfortunately our flight was just a day or two after Dallas had suffered terrible tornadoes. Our flight from Mexico to Dallas was delayed, and our flight from Dallas to Seattle was cancelled. When we asked for a new flight home, we were told there was nothing available until Thursday. This was on a Sunday. We were directed to the customer service desk to see if any sooner flight could be booked. We found the desk...and the line of tired, irritated travelers that spanned on longer than a football field.

We were further disheartened to learn that all local hotels were full to capacity with stranded travelers. We even learned that all the car rentals were gone, rented out to travelers desperate to get to their destinations. Long story short, fate connected us with a businessman named Michael from Washington, D.C. He was in Dallas for an extended business stay. Upon hearing our tale, Michael informed us that his business was putting him up in a beautiful hotel with two bedrooms. The second room was for his family to use when they visited. His family was not with him at this particular time, so he invited us to stay with him. Before this encounter, we assumed we would be sleeping on the airport floor...possibly for as long as four days. Needless to say, we were beyond grateful for his incredibly kind gesture. Miraculously, we were able to fly out of Dallas the following day (involving a another thank you to a nameless telephone airline customer service representative, who went above and beyond to make it happen), and due to Michael's act of kindness, we were able to make it to that flight well-rested and refreshed.

We were in the cab (driven by Michael's regular driver, Rasheed - a fantastic driver with a very kind heart), when James turned to me and said, "Wow, Mom, Michael is being SO kind to us!"  How wonderful that we were able to wrap up our travels with a long discussion about the concept of "pay it forward". So...once again...thank you so much, Michael, and be assured, we will, indeed, be paying your generosity forward.

Here is just a portion of the line at the airport customer service desk

DUDE...If I Can Do It, You've SO Got This!

Anyone out there with some new resolutions? Are you thinking about shedding a few pounds? Someone recently commended me on my dedication to finding "me" time each day. It led me to reflect on just how much my commitment to daily activity means to me, and how much it benefits my whole family.

About 8 years ago I went on a vacation with my sister. I had recently had my 4th child, and was so hopelessly burned out that I ran away for a week, hoping to catch my breath. It was taking that [literal] step away from my life that opened my eyes to the fact that "Stephanie" was no more. I was mom. I was wife. I was nurse. My life was all "have to", all chores and responsibility. Stephanie (her personal hopes, dreams, and aspirations) had completely disappeared...and something told me there would be no relief from my burnout until Stephanie was found again.

How do you do that, though? How do you take the time for "self exploration" when you have a house full of special needs kids and an 11 PM-7 AM job? Well, I was fortunate enough to benefit from some lucky timing. I got the pictures back from my trip, and I was horrified by my image. Before that trip there were really very few pictures of me; I was always the person BEHIND the camera. Seeing one particular image of my sister and I, though, disgusted me. It clearly showcased each of the 10 souvenir pounds I had held onto from all of my 4 pregnancies. At the same time, a friend of mine joined Weight Watchers, and asked me if I was interested in joining. With that photograph fresh in my mind, I gladly agreed to tag along to the Weight Watcher meetings...although - to be honest - I didn't think it would do a lot of good. I have a number of family members who struggle with weight; I figured I was just doomed to be heavy the rest of my life.

Weight Watchers served a few purposes. First, it got me out of the house once per week - not for a school meeting, not for work, not for a mad dash to the grocery store before picking one of the kids up from tutoring - but an hour EVERY week of strictly ME time. The accountability of the weekly weigh-ins kept me motivated. The weekly lessons taught me more than I ever would have guessed I needed to learn (as an RN!) about healthy eating habits/lifestyles. The social aspect of the meetings made me some friends and offered the crucial support/encouragement needed for success. I was very pleasantly surprised at how fast the weight came off. In roughly 6 months those 40 "pregnancy souvenir" pounds disappeared.

A shocking side effect of my weight loss effort was the discovery of my inner jock. It began with Weight Watcher's call to just "move more". I started with walking. On the walks my mind would race with what I had to do back at home, so I started jogging part of some walks so I could get home faster...then more of the walks were spent jogging...then I just dropped all pretenses and started jogging. For awhile I had fun competing. I ran a couple of 1/2 marathons and even did a triathalon sprint. I no longer feel I need the "validation" of competition. Now I just enjoy my "me hour" each day. I walk 4 miles 5 days/week, I do a 7 mile run on Fridays, and go to a Zumba class on Sundays. Not only does the exercise relax me and keep me centered, but I do my best thinking out on the road, whether I'm walking or running.

I've done pretty well at keeping close to my goal weight, but occasionally I drift up. I've had fun lately joining games on DietBet.com. I just joined one a few days ago. You place a bet that you'll be able to lose a certain percentage of your weight within a certain length of time. For instance, I just joined one the other day (after spending a week at an all-inclusive resort - YIKES!!!). I bet $35 dollars that I'll be able to lose 4% of my weight (5.9 pounds in my case) in one month. There are 145 players in this particular game, and the pot is $5075! Last year I joined a game where I made a similar bet for $20. It was a smaller game (fewer players), but I won $90. Nice!

I share this tale to make the point that if I can lose some extra weight and learn to live a healthier lifestyle, ANYONE can do it! If you want to do it, too, and you're looking for a cheerleader, let me know; I'm there for you. I'll be forever grateful for those who supported me through my early efforts. Do it for yourself. Do it for your family. Do it to feel better all around. You won't regret it!

The image that sparked it all

The following year

A kiss & hug before a 1/2 marathon

Final leg of the triathalon

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?"