Philip’s Christmas Miracles

Philip’s Christmas Miracles

How do I define a miracle? I need to ask myself that this early morning on the day after Christmas. Since my internet is not up and running at this very moment, I can’t reference the latest Miriam Webster definition, but I think it might pertain to things unexplainable and supernatural, like walking on water, or a tumor that disappears from an x-ray. But after a day of serious slacking off, lots of thoughtfulness and quiet, I have officially redefined my personal definition of “Miracle”. When something as ugly as Duchenne takes center stage in your life, it’s something to suppose that a miracle would be a cure to this disease. However, at this stage of the game, I have decided that we are not waiting for a cure. Sure – with all the research going on, we do HOPE for a cure. But being a woman of science, I am not waiting for one. No…waiting implies sitting around glancing at the clock, waiting for something will happen. While all that waiting goes on, life is HAPPENING all around us! So, we will throw a wishbone into the vat of hope, but we are not waiting anymore; we are going out to LIVE with what we have. And so it was with Christmas planning this year.

I spent the last month or so in cahoots with my kids, convincing them that we should make this a great Christmas for Philip. With finances at an all-time low for most of us, we had to be creative in just how we could accomplish this. First thing Phil wanted was a game system of his very own. The second thing he wanted was a cell phone of his own. And the third thing he wanted was an iPod. Now, on any other kids Christmas list, I would have rather scoffed at what is the wish list of a spoiled brat. Imagine – an expensive game system to twitter away hours upon hours on ersatz adventures and killing sprees? A cell phone? What 12-year-old NEEDS a cell phone? I mean, the new ones do everything but your laundry! And I think the newest ones actually DO – or at least has an app for photo-shopping the dirt out of your clothes. An iPod I get – I have my own tiny treasured version of my personal tunes – but it’s a first generation shuffle – the size of a large postage stamp and that’s all it does is play my music. These new ones, like the iPod touch, are basically little computers in their own right. Yeah, give Johnny Rotten everything on his list – and watch how he as absolutely no concept of money – as the bill for these items is somewhere in the neighborhood of $800 if purchased new. The $300 cell phone will be taken sledding and trashed. The iPod touch will get its screen cracked as it gets thrown into his duffle bag. But he probably won’t miss them too much as he conquers the $50 games one by one and now wants to run out to Game Stop and buy more – at your expense.

However – just for fun – add Muscular Dystrophy to the picture. A gaming system suddenly makes sense. Phil can’t go bowling, or sledding, or just go and run around in the park. Perhaps if we could put a little adventure on the TV set, over which he HAS control, he would not be as depressed about some of the things he can’t do! Yes, Phil and Mario and Luigi CAN conquer the galaxy together! And so it was decided that we would do what we can to get Phil in The Game.

As for the cell phone, I initially balked at that. I mean, it’s not like he has a big social network. I can barely get him to talk on my phone when someone calls me and asks to speak to him! But since all of his siblings have one, the topic came up one day, when he asked when he was going to get “added to the plan”. I asked him why he would want a cell phone. “So I can call and text people,” came the overtly obvious reply. Had to think about that – I know how I hate it when someone else gets a call and then shoves their phone at me – “Here – talk to so-and-so”. No…I prefer to tend to calls I personally make and receive. Why would it be different for Phil? And for someone as painfully shy as Phil – a shyness and public timidity that arises from the fact of all he can’t do – I began to rethink that. Maybe he could “reach out and touch someone” all by himself, if only he had the equipment to do so. Maybe he would not feel like “such a baby” if he, too, has access to some of the techie toys that most of his peers have. It would be worth a shot, wouldn’t it? To bring him out of his utterly confining shell. So, another round of conversations with the kids, and we figured that since Scarlet recently got her own plan out in California, he could have her old number and phone. She was coming home for Christmas, and she would bring it with her then. A no-added-cost present! I was really liking that idea!

Then we examined the “need” for an iPod. Like I said, the newest, latest, greatest iPod touches are all the rage – but a cheap little MP3 player would do just fine. Music is, after all, a healing thing. Regardless of how I feel about the kids musical preferences, I do see how their music helps them through difficult times, and I know I love mine for those few times when I can lock the world out of my ears, and fill my head and heart with songs that minister to me. Yes – an iPod would be a good idea.

Davita had the perfect plan. Her friend was getting a new one for Christmas, and had offered to sell her iPod Touch…(say it with me: Ooooooh! Ahhhhhh!). Davita had been saving her money for half the year to buy this from her. She in turn would sell us her iPod – just a simple one – to give to Phil for cheaper than we could buy it at Wal-Mart. A handshake on that, and it seemed that Christmas for Philip was in the bag!!

So, with my entire Christmas budget of a $100 dollar bill and $100 credit card, Mark and I spent December 23rd shopping for token gifts for the rest of the kids. Savanna rolled in late on the 23rd, and we spent most of the night wrapping presents and catching up. After a 2 hour nap (from 4 to 6 am), I got up, put a turkey in the oven, got Phil up, and Davita, Phil, Mark and I headed out to the airport to pick up Scarlet who would arrive at 8:30 am. Her flight delayed by an hour, I spent the last of the Christmas cash on expensive airport coffees for all, while we checked out the Mitchell Field exhibits. 

With Scarlet safely on the ground and headed for home, I was as happy as any mom could be that all my kids were en route to my house for an evening of celebration in our family’s unique style! The turkey was done when we got home, and the ham went in the oven. Time to get the presents under the tree…and then things started to unravel for Phil.

Turns out that through some mix up, under the tree were games for Phil – but no system to play them. (WAY long story…). Turns out that Scarlet had accidentally dropped the phone in the toilet, and the SIM card had gone missing. (Yes – another long story!). Turns out that Davita’s friend would not be getting her new iPod until Christmas morning, so she had not yet had a chance to fill hers up with anything for Phil. And for the past few weeks I have been assuring Phil that this would be a good Christmas for him! His biggest fear was that he would have no presents. I joked with him about there being none, just because I knew it would stand in stark contrast to the electronic windfall I knew he was getting. Until now. I was just sick – here it is, 7:00 p.m. on Christmas eve, with only a few items under that tree with Phil’s name on them. Even a quick run to Wal-mart was out of the question – the only day it’s closed. I had spared the expense of a lot of cheap plastic toys since he was getting such high level gifts which he would no doubt be occupied with the entire week of Christmas vacation. So without the 3 biggies – what was there? A wallet, some jammie pants and some games to system he didn’t have. The only thing he expressly did NOT want were clothes.

The rest of my kids understood the lack of presents – but he struggled with it. Thankfully, his brother Travis had gotten him a Lego set to mess around with, but that was pretty much it. He tried to rally his attitude with all the festivities, but I could see he was crushed. I put damage control into full force, hoping for some miracle. 

The cell phone that had checked out the sewer in Cali spent a few days in a jar of rice – and we experienced the miracle of it actually working! I couldn’t replace the SIM card right now, but I ducked down to the basement to wrap it up for him. After the presents were opened and the kids were all dancing, singing and eating, I presented it to Phil. I had to explain that there was no card, but that we would get one as soon as possible and you should have seen the look on his face! He smiled so big! He got his phone!! His whole countenance changed. His older brother brought his game system so he could check out the games he got, and for the first time I told a bald-faced lie, that his game system was lost in the mail. Secret pow-wows with my kids all found the funds to go out after Christmas and get him his own system to play the games he got. And with this much of the situation handled, I felt a little better. After all, we had a wonderful time with all the kids home, and we all went to bed happy and exhausted with more than enough Holiday Cheer.

We all slept in late on Christmas day. The house was a disaster, there were a few headaches in the house, but it was going to be the perfect lazy Christmas of leftovers and movies and naps. Then mid afternoon, I witnessed something that is the Christmas Spirit personified. I witnessed what I esteem to be a miracle.

Davita asked if we could talk privately. Hmmm…okay. “I have something for Phil,” she said. Earlier that morning, her friend stopped by and made the exchange of iPods. She pulled it out and showed it to me. It was a first generation genuine iPod Touch, settled neatly in a protective case and in absolutely mint condition. “I got this this morning,” she said. “I cleared off all the memory and set it back to factory settings. Then I put all the music Phil likes that I could find on it – (some 160 songs) – and downloaded a bunch of games on it. I want him to have it.” She proceeded to show me matter-of-factly how this little miracle machine works to access the internet, Facebook, YouTube, games, music, pictures and more, all with the touch of a finger. Even a very feeble finger. I could not stop the flow of tears. “Are you sure?” I asked her. She had saved up all her money for this. She smiled and nodded a somewhat chagrinned smile, “I’m sure.”

And so, in a not-so-saintly, 14-year-old-humor way, she packed it carefully in a tampon box and wrapped it up for him. His first reaction, of course, was to scowl and push the “gross” box away! But when we encouraged him to at least check what was in it…well, the pictures say it all.

Phil spent the rest of his day figuring out how it worked, playing the games, “zombifying” family photos (a very macabre app), and checking his Facebook. We went on eBay to buy a blue case for it, (as the pink one it came with, he decided, was not the one he wanted to take to school), and I spent the rest of the day quite convinced that my slight headache was from the tears of joy, rather than from the foofy peach drinks the kids made the night before. 

So, how do I define miracles? I'm going to side with Albert Einstein on this one:  

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.

 And I am living in the miracle of today, filled with all the joy and wonder of our Christmas Miracles, and the hope of the miracles tomorrow will bring. 

 

Live Like You Were Dying

Live Like You Were Dying

Tim McGraw had a hit country song a number of years ago with this title. If you haven’t heard it, the gist of it is a person in their “early forties, with a lot of life before me…” who is told that they are terminally ill. The song then says, “ I asked him when it sank in,
that this might really be the real end, ‘How’s it hit you when get that kind of news? Man, what’d ya do?’ ”

The man responds, “I went sky diving, and Rocky Mountain climbing. I went 2.7 seconds on a bull named Fu Man Chu, and I loved deeper and I spoke sweeter and I gave forgiveness I’d been denying…and he said someday I hope you get the chance to live like you were dying.”

The song came to me after a morning conversation with Mark. I was rolling cigarettes – one of my longstanding vices – and reflecting on a million different things that were plaguing my mind this particular morning. Each and every thought was carefully designed to get under my skin and irritate, and weighty enough to put a drag in my step, with burrs under the saddle. Yet as each thought presented itself through the crowd gate onto the stage of my mind, I evaluated each one by the measure of my life. Will this matter in a year? In five years? In ten years? When I’m dead? And some of the things that are looming so large right now I could see would be reduced to a mere experience, through which I would no doubt live, survive, and in most cases, thrive in spite of it. And so one by one they were dismissed to go and take a number and get in line. As I filled the tobacco chamber and cranked the handle over and again, I said to Mark, “You know, I feel like I’m dying.” He looked up at me concerned, and asked, “You feelin’ okay, hon?”

“Oh, yes…I feel physically fine,” I told him honestly. I do go in every year or so to the doc for a State-of-My-Nation exam, and despite the cigarettes have come through with cholesterol, blood pressure and my “numbers” all in the healthy-as-a-horse zone. It wasn’t about my physical health. It was more about my mental health, and my spiritual health at the moment. I explained that I was having a little epiphany about life– and what matters most. And I was wondering whether this is normal or not – to start to see everything in the light I was casting on it. Yes – it’s kind of important to pay your bills, and keep the house clean, and take care of the kids’ issues. But realistically, what if I were dying? What if I had made the trip to the clinic this year only to hear that something is not right? That there is nothing they can do about it, and that I had better put my house in order. How then would I feel about the tires and lights that need to be replaced on our vehicles? How does that weigh out against a Christmas tree and presents under it, (of which there are currently none of the above)? If I am living just for today, then Christmas be damned – we must have street legal vehicles. On the other hand, if I am leaving the planet in the spring, the piece of tin can wait until after I see the smile on my kids faces when we decorate the tree, and open presents.

I’ve gotten to a point where this is the perspective I must judge and live my life from, which can be summed up as “What matters most in the long run”.  And it was sometime around then that the song popped in my head, and I got to thinking about what in my life has brought me to this philosophical point. And after a particularly rough morning with Phil, I had my answer. It was all coming from my relationship with my beloved son, Philip, courtesy of his dread disease, Duchenne Muscular Dystrophy. (Kind of a sad commentary on ME for not having picked this up with a whole ball-team of healthy kids…but no). It took that day in the doctor’s office that we all dread: When the news is not good.

We Duchenne parents get the kick in the head early on, and are left with years to pick up the pieces of our shattered dreams. We are told what to expect in the vaguest of terms. It’s one thing to know that your child will lose muscles; they don’t tell you what that looks like as they struggle to get food in their mouths. It’s one thing to know that they will require 24/7 care; quite another to watch your home turn into a hospice. It’s one thing to enroll your baby in the state run Birth-to-Three program; another reality altogether to try and understand the mood swings and temperamental outbursts of a teenage boy who has no social life and can do nothing for himself. And contemplating how I can help my son this very day with some of the things he struggles with, I had a further eye-opener.

It started later that day, when on one of the Duchenne websites of which I am a member, a parent posted a picture of their boy, who recently passed away. His eyes were so bright, but his body so broken. Phil saw the picture and I read the eulogy to him. “He’s dead now?” he finally asked quietly. “Yeah…” was all I could manage. My stomach kind of knotted up as I realized I probably should not have told Phil about this, or shown him the picture. And in a moment that could only be replicated in the movies, I suddenly GOT the big picture. I suddenly understood some more of what I will have to work with for what will be an indeterminate amount of time.

Phil, I believe, has yet to come to the conscious idea that he is dying. Yes, we all are, I know! We all get our time in the box, and we don’t know when. But all things being equal, his body is just not designed to hold out for the amount of years we are taught to be a full lifetime. And I was struck by the unfairness of it all – not so much the fact of the disease, but the revelation of the logical conclusion of it.

When one among us is examined and found to have some condition that is incompatible with life, we indulge in what is only the normal human response: We grieve. We listen to the verdict. We seek out options and opinions. We call our loved ones, who come along side of us to cry with us, hope with us, reminisce with us, plan with us, and bring us casseroles.  And like the man in the song, we can decide what to do with the time that remains.

Now I think of my son. I’ve known the end result of Duchenne for many years now. He has yet to fully realize it. And there won’t be a day when he sits down with his physician and he gets the sentence he doesn’t want or deserve. There will only be a moment in his mind when it all comes together, and he comes to the horrific realization of where his life is headed. He won’t be able to call his mother, or his best friend and tell them that he just got the news that he is terminal. There won’t be a rallying of support from those who find out. There won’t be cards or casseroles. No one will know that in the quiet of the night, he suddenly understands the truth of the matter. Will I be understanding as he cusses and swears the next morning as we wrestle his pants on about how he hates everything, from getting out of bed to the fact that he is crippled? Or will I offer him the standard, “Come on, kid…you know you have to go to school today. I didn’t want to get up either, but we gotta do what we gotta do.” Imagine getting that response if it were YOU finding out your body has turned on you?

ME: “I just called to tell you that I have a terminal disease. The doctors can’t do anything, and it’s all down hill from here. Sniff, sniff.”  

FRIEND: “Oh. Well, that sucks, but let me tell you, having arthritis is no picnic either. By the way, will you drive the girls to dance class this week?”

No, not fair at all. With a date on the calendar, we can now mark time, plan our Rocky Mountain climb and bull ride. We can wander through the five stages of grief at will, and everyone will try and understand, while secretly wondering what they would do if they were in our shoes. All will be forgiven, and therapy will ensue, as we try to tie up any loose ends, and live for the moment, to leave something behind, to make of our life something meaningful and rich; to be remembered.

With no announcement, no ceremony, no date, no rite of passage, my son will be left to himself to navigate this path. More than likely, all of his caregivers (including ME!) will undoubtedly try to steer clear of the subject of his mortality, and not allow him to speak freely about it, steering the conversation with a more positive spin or pre-empting it altogether with happy little bits of misinformation about that not being something that we need to worry about. Easy for us to say.

And so what’s a mother to do? How do you prepare for an event that will have no herald to announce it, no set course once it arrives, no set of rules by which to govern oneself during its stay, and which you will have no idea when it has made its peace?

I have figured out over the course of time, that there is no one way to handle any of this. It’s a wake up and punt on a daily basis. It’s a question I ask myself every morning, “What do I have in my hand?” How far can I stretch the resources that I have? And from basically the same answer for a number of years, I have concluded thus: Being of sound mind and body and spirit myself, I have been wandering in this Pointless Forest now for just over nine years. I have looked around enough to know what’s here, and the light has filtered through the pointed trees enough for me to start to understand the implications of what is here. This last insult of spinal fusion has served to further clarify the purpose and intent of the disease, and allowed me to examine up close and personally the nature of the beast. It’s purpose is to steal, kill, and destroy.

In the midst of all the swirling negatives, however, it has also afforded me the opportunity to reexamine my faith and the stubbornness within me that will not go down without a fight. To come to an understanding that everything has a point, even if I do not understand. And that just the fact that I am here ahead of Phil is an ace up my sleeve, and that as he is closing in on this forest on his journey through life, if I will listen very carefully, I will hear him when he arrives. And when he does, I will hear the terrified cry of his heart, and be there to wrap my arms around him and tell him it’s okay – that I am here, and that I will be with him no matter what. That we are in this together, and I will never let him go. That as the road gets harder to navigate, I will be there to help him along. He will never be alone.

I can make sure that he never succumbs to wallow in self pity – and to help him see that his life is still worth living – and if this monster seeks to cut it short, then by god we’d better start living! We can take that trip to the zoo. We can go see the Harlem Globetrotters. We can go hunting with USSA. We can decide on a day to day basis what we want to do with this life. It’s all that we have right now – what do we choose to do with it? I can look at anything that crops up in life, and instead of taking a pass on things because I deem them too much of a hassle, I could see them as the hassle that will bring the best of memories to our life and times. Because all of life boils down to what we do with our time, represented in the end only as a dash between the dates on a tombstone anyway. It’s all just what we experience – what we do with what we have, and truly – nothing more. And today I realize that we already have the chance that the songwriter wishes for us: To live like we were dying.

A-Hunting We Did Go!

December 8, 2010

A few weeks ago, my friend, Dori, whose son also has Duchenne, posed a very strange question via our Facebook IM: “Would Philip like to go hunting?”

I stared at the screen for a full minute, cocked and eyebrow and thought, “Say, there’s a question!” and went off in my head about all the things I could say to that. “Sure! He loves to take on the wild right after he’s done with his tackle football games. Drives right out there on his 4-wheeler & 12-guage and sits in the cold waiting for Bambi to trot on by.” Knowing she was not kidding, I typed back something to the effect of, “I guess we haven’t really talked about it. Why do you ask?”

Fifteen minutes and a chat later, I’m asking Phil a question that I never thought I would be asking him and getting much the same look from him that I probably gave the computer screen a few minutes prior. “Hey Phil…would you like to go deer hunting?”

His look said it all. How is that possible? Are you kidding around or what? I can’t….

I assure him, “Really, Phil…if you could, would you want to go deer hunting?” I explain to him that there is an organization that sponsors hunts for people of all ages with disabilities, all around the country. And that yes, it IS possible! His eyes begin to light up, and he starts biting his tongue and smiling with excitement.

Somewhere in this son of mine resides the recessive gene that loves to hunt. He gets it from me, and I am fondly recalling the days when hunting was a yearly event. That week before Thanksgiving, where the blaze orange comes out, the guns are cleaned, the tags are bought, and while the guys in my party (all of whom were guys except myself) are all no doubt dreaming of the trophy buck coming into their sights. For me, it was all about the freezer. I would kiss the kids goodbye late on Friday night before opening day, knowing that before they would arise on Saturday morning, I would be in a blind somewhere in the woods – gone Grocery Hunting. From the watch and wait, to the sighting of the deer, to the cock and bang of the gun, to the field dressing and tagging – there was something primitive and vestigial about it; something sacred and survivalist. I was providing food for my family. I must’ve been a large cat in a previous life. This was my contribution to the survival of my clan. The kill was only the beginning. Then it was on to cutting up and processing hundreds of pounds of venison and converting it to its food value of roasts and steaks and jerky and burger and sausage.

At the end of the nine day hunt and week long processing fest, I suppose most of my kids thought that the butcher shop was a far easier bag, and with the tides of life washing us closer to the city and farther away from farm life, this practice slowly faded out of our lives. And it seemed a natural progression, as Phil grew, and his limitations became more and more obvious. Thus, my hunting days drew to what I thought would be a close, and were filed neatly away into the folder of my mind labeled: Fond Memories.

Before it faded entirely, I would buy tags for a friends hunting party, and they would bring me back a deer to cut up and freeze for my family, and I recall one year when Phil helped me with the whole process. He sat in the skidsteer, whose bucket held the carcass I was disassembling, shivering in the cold, but refusing to go in the house. He wanted to watch the whole thing. He sat with me in the kitchen as I fetched the quarters out of the tub one at a time and sliced, diced and ground them into edible portions.

Now I was looking into the face of a kid who realized I was not funning with him. Did he really want to go deer hunting? His only question was, “How can I do that?”

I really did not know exactly myself. But I had just heard tell that there was an organization that had taken this ancient tradition and made it accessible to virtually anyone who wanted to engage in it, regardless of their ability. United Special Sportsmen of America, headquartered right here in my own state of Wisconsin. Phone calls were made, and a hunt for Philip was scheduled for December 3-5, 2010. This was to take place at a 160-acre deer farm up north here in Wisconsin.

We drove 2.5 hours up there on Friday evening, and arrived at what was called the lodge. It was, instead, a fully furnished 3 bedroom house, decked out with trophy whitetails on the walls, a fireplace, TV, full kitchen, in-floor radiant heat and hunting motif. We met with the owner, Shannon, who said he would pick us up at 6:00 a.m. Saturday morning in his Kawasaki Mule, a 4-seated ATV.

Poor Phil, didn’t sleep too good that night – just too excited, and in a strange place, strange bed (which we loaded up with pillows and wedges to replicate his hospital bed), and in his own room across the hall from ours. He was sleeping at 5:00 a.m. when I roused him out of bed and into the chair. We bought camo pants, hat and gloves for him, and wrestled them all into place by 6:00, when we heard the Mule driving up – right to the back door of the lodge. And I mean RIGHT to the back door! I picked Phil up out of his chair, and took three steps out and set him in the back seat of the vehicle. We buckled him in, and I snuggled in beside him for a five minute ride out into the blackness of the pre-dawn woods to our blind. It was absolutely beautiful.
Once again, our guide pulled right up to the door of this 8’ x 8’ shack, which had a propane heater, four chairs and a peculiar gun mount pointing out one of the windows, which were on all four walls. Phil sat comfortably on an office chair, jacked all the way up and with his wheelchair seat serving as a booster seat. We were all settled in when the light began to give shape to things in the darkness around us. I could see that we were on a hill, about 50 yards from a clearing.

The gun, a 7-mm .06 rifle, was not yet mounted in the stand, when Shannon pointed down the hill at a dark shape moving across the clearing. I handed him his binoculars and he told us that it was indeed a buck. As it got a bit closer, he told us it was a trophy rack that would probably score over 200 points. (Not tines, but points in a system that the pros use to score rack size.)

My first thought was not, “Damn…no gun set up yet!” (That was my second thought, actually…). I was simply thrilled to be witness to this majestic creature, as it munched contentedly on some corn, looking up occasionally, totally unaware of the hunters on the hill. As daylight brought further clarity to the valley, our big friend finished his breakfast and wandered off back into the woods. As soon as he left, Shannon brought out the gun and placed it in the mount.

This mount is a testimony to there being a way wherever there is a will. The rifle drops neatly into a rest, and the scope is hooked up to a small screen with crosshairs, which is controlled by a joystick, not unlike the video games and wheelchair that Phil is ultra familiar with. The trigger mechanism is then connected to a long plastic straw, which, when you suck on it, deploys the trigger. Look ma!! No hands!! And no shoulder to get kicked, either! He took the time to show Philip how it works, and what to do.

About the time the tutorial was concluding, a doe wandered purposefully into the clearing, looking this way and that and making her way to the dining pile. She must have given some type of signal, because her two fawns followed moments later, hopping and skipping in behind her, and joining her for a bite to eat. The sun was obscured by clouds, but there was now plenty of light, and Mark was able to turn on the video camera and catch the whole meal on film.

Phil was pretty mesmerized by the whole thing, and his lack of sleep was catching up with him. His eyes were getting heavy, so we decided that we could take him back to the lodge for a rest, and come back around 1:30 in the afternoon.

We got back in the Mule, and Phil was now seeing the woods in the light of day, and the trail that lead from the lodge to the stand. There was much we’d missed the night before in the darkness, like the fact that the lodge was parked right up to a large elk enclosure. Shannon told us about Jasmine, the friendly elk, who will come up to the fence for cookies and treats. As we rounded one corner, a huge bald eagle soared up over our heads and landed in a tree. Now, where we live, you just don’t see bald eagles, so this was worth of a pull over and a camera shot.

Back at the ranch, we called out to the giant Jazzy, and she trotted right up to the fence, and enjoyed a cherry pop-tart Phil held for her. We got this on film, too. Phil, Mark and I passed the time watching a movie, baking crescent rolls and flipping through hunting magazines looking at all the pictures of deer. He had officially caught Buck Fever.

At 1:30, Shannon came back to pick us up for round two! Phil was so optimistic. “I’m gonna shoot a deer tonight, aren’t I?” changed over the course of our ride out to the stand to, “I AM gonna get my deer tonight!” Back at the blind, Shannon showed us pictures that he took while on a hunting trip to Africa! What an amazing trip, and Phil was taking it all in, listening to the stories, and seeing all the different wild life there. I was just happy to have this chance to sit still in the woods and listen, and watch, and wait. I had forgotten how much I loved hunting – especially since it was nice and warm in the shack! My mind wandered back to the past, and opened the Fond Memories folder to review its contents. The adrenaline rush that accompanies the sighting of the deer, the focus as you raise your gun and take aim, the strain of trying to hold your aim steady while moving with the deer. The split second it takes to depress the trigger which seems to go in slow motion. The excitement when you feel when your weapon discharges with a colossal bang and you see the bullet hit your target, and the animal as is crumples to the ground, taking it’s honored place in the food chain, giving it’s life for the nourishment of yours. When suddenly, out of the far side of the clearing, two bucks sauntered in, and I realized that against all odds, I would get to share this experience with my son.

The binoculars came out again, and Shannon smiled when he whispered to Phil, “That is the perfect buck!” Mark had turned the camera on, and I watched as Phil was brought close to the gun mount and instructed on his aim and fire technique. Another deer stepped into the sights, as Phil decided he had perfect aim, and “BANG!”

Both deer bolted…leaving us to wonder briefly if the shot found it’s mark! But the deer only made it about 30 yards before it stopped. We could hardly see it through the brush, but it was not moving. Shannon took the gun from the mount and pondered if he should take a finishing shot to be sure. After a minute of visually scouring the brush to see the deer, he decided to do just that. He nodded to Phil, and handed him the bullet casings. “You got your deer, buddy!” The ear to ear grin was not caught on film, but I will forever remember it in my heart when I hugged Phil and congratulated him. He said to me, “I didn’t think the gun would be so loud!”

We left the blind and got into the Mule, and drove down to see his trophy. It was lying about 10 yards off the trail, and Shannon dragged it over to where we were sitting. Phil was watching with the most intense look. I asked him what he was thinking. “I feel a little bad for the deer,” he said, then added, “But that’s a lot of meat, isn’t it Mom?”

“Yes, Phil…that IS a lot of meat! And every time we eat it, you will know that YOU got it for us as a family. YOU shot the deer, and filled our freezer with tasty meat.” And he smiled, the kind of smile you can only hope to see on the face of someone whose life is defined by all that they CANNOT do. But this, he not only could do….he DID! It’s only fitting that he have that rack as a testimony to this event – an event that throughout the history of man has separated the men from the boys; the first successful hunt in any boys life that marks the passage from boyhood to manhood. Chair or no chair – Philip did it!

Shannon then drove us back to the lodge, and we got into the van and headed over to the main house half an hour later, where the deer was strung up and ready to skin and bone out. Phil had 101 questions as it was disassembled and processed as we watched, in what to me was record time!

Afterwards, we headed back to the lodge with a tote full of meat, hide and antlers, and a reason to celebrate. We enjoyed a light meal and a movie, but Phil was out of energy. He fell asleep on the couch in the first 10 minutes of the film! At the end of the movie, Mark and I picked him up and moved his sleepy frame into the bed. He woke up long enough to look up at me, smile THAT smile again and ask, “I really shot a deer today, didn’t I?” I kissed him on the forehead, gave him a big hug and assured him, “Yes, my friend, you certainly did!”

Backward Glancing...

Backward Glancing...

Posted Nov 11, 2010 10:58am

 

While sorting through all of my documents, I came across this, which was written during Phil's surgery as a journal entry. I did not share it at the time - this was for me. But looking back has been very educational, and I have decided to share it here today, from this vantage point - having arrived on the far side of this dark experience....commentary to follow!


September 7, 2010
I am in a sick, weird place, surreal to say the least. Here I sit on the third floor of Children’s Hospital, while somewhere in this monstrous structure, my little boy is in pieces on a table. Like a puppet. My little Pinocchio needs his back firmed up. So, we call Gepetto, and take him back to the shop for repairs. If I look at this any other way than objectively – (this is just a human body, it needs to be fixed, we fix it, etc.) - I will fall apart. Now, define THAT…well, it’s an excruciating pain in the center of my chest that radiates out like a hot flash out of control, and it HURTS! I can’t get away from it! All I can do is groan and ache, and try to move away from it, but I can only move INTO it…it’s all encompassing.

Food = Dirt and worms…shove them down my gullet. Living here in the moment…perched on the edge of reason, on the verge of tears. Where will this end? I want to collect my little Puppet at the end of the day, and take him home, zipping into his van, giving the “mustang shout out” every mile or so, or quizzing me on the build of every semi cab on the way home: Sleeper, or no sleeper?

I don’t know how this day will end. Will I see his eyes? Let him know that I am here? Or will they not extubate today? Will his little body say fuck it, and not rise to the challenge set before it of healing? I have to laugh at my strong, healthy, big boys at home whining about their bumps and bruises from playing football, and compare that to having your spine fused in the fashion that it will be for Phil. My head hurts. I want to throw up.

I have been to a lot of places in the past few months…just kind of guess work on what this day would be like. Here I am and it’s all still a mystery. They will call again soon and let me know what is going on in there…what stage of repair my little Pinocchio is at. How he is tolerating it?

1:10 pm: They are pretty much done with the hardware on one side of the back, and are starting to work on the other. They align all the hooks and screws and then when the back is aligned, then tighten it down. At this point, Phil is starting to bleed…his bones are oozing. They have given him two units of blood, and are recycling his own blood. He is and has been stable. This is supposed to be a good thing.

I am powerless here. Not the right word, actually. I am in the proverbial free fall. They could come and tell me that he bled to death, and there is nothing I could do about it. They could tell me they quit, and they are done with only half the hardware…I can do nothing about it. They can call me and tell me everything was well and good, and to come and see my boy…and there is still nothing I can do about it. I am only ½ step into this new life – this new dynamic of taking care of my son becoming the center of my universe, here – and I don’t know what to expect. Usually I’m pretty good at that…I can tell how something is going to roll…but not today. Not with this. This is a complete and total mystery. I need to connect with Phil. Where are you, my friend? I want you to know that everything is okay. Or I want YOU to tell me that everything is okay!!
I am having such a hard time being crushed and broken by joy….the joy of being Phil’s mom…the joy he brings…how much I love the little shit!!! But that joy is what is killing me softly today. I will write more later...



I wrote this during Phil’s surgery. Today is November 11, 2010. Two months and four days later. I just found this entry today, and did not wonder why I did not share it then. This has me in tears. This has me remembering the agony of that day and the lead up to it in a way that still hurts. I know there are other mothers who are going to go through this, and I find myself glad that I still feel this so intensely. I find that I don’t want to forget. I don’t want to be the one who forgets and tells her that it’s no big deal, just because our outcome was amazing. At the point above, the outcome is not the issue. It’s all about the moment. It’s a time of suspended animation. Nothing else matters. It IS the proverbial rock and a hard place, because you are trapped in it. All you can do is submit to it, and let it happen. Because it’s going to. Whatever the outcome – the experience of that day is all you have at that time.

I read with great reflection the last part about being crushed by joy, and realized how very descriptive that is – and how right on it is when you are the proud owner of a Duchenne boy. If going down this road had been a choice, we would have all declined. Oh, no thank you. What do we hope for every newborn family? Say it with me, “as long at it’s a healthy baby”…right? In other words, the worst thing that could happen to a person having a child is that the child is broken. Because if we qualify the “as long as…” in our text, we would have to say that nothing else – the gender, the size, the shape, the color – matters…as long as it’s healthy. The main thing you want is good health. The most important thing, then, is LIFE itself. We hope for a beating heart, and breathing lungs, and a healthy nervous system to communicate among the members. And I believe we are correct in this, too!

But this is not the case when we spin the baby roulette wheel. “Come on, healthy baby!” we say as the months roll by. Tick, tick, tick…the wheel slows, the labor pains set in and….(drum roll, please…) The harsh buzzer goes off and the audience gives a collective groan…”Oh…..no….you’ve got the special needs!” And we try not to cry in front of everyone.

Now fast-forward to a few years later. To now. To this person who you live with, and are coming to know quite intimately, because they are 100% dependent on you. Think of the laughs, the arguments, the conversations, the silliness….think of all of it, and consider trading it for someone else. I know…we all want to envision our boy “healthy” like they were “supposed” to be. We wanted to be buying them the gas powered ATV on their 13th birthday – not the Lego edition. But would we trade this life for another? Take some time to ponder this:

If you woke up in God’s office, and he’s giving you a re-do…would you take this boy? Knowing what you know now, and not knowing what the future will hold or how it will play out…would you take this boy?
I do not believe there is one among us who would turn and leave without her son. All the pain, all the heartache – but all the joy they bring just to see their face and hold their hand? There I stand…feeling the crushing pain of it all, mixed with the intense and wonderful love I have for him…smiling happy tears and crying sad tears simultaneously. Talk about emotional overload, total insanity meets totally sane. Total darkness which becomes total light. All that is life embraces all that is death – and LIFE wins.

I watched a video done by another DMD parent. Phil watched it with me. The parents are still in the depression stage of grief, and informed the audience of the rapaciousness of Duchenne, while showing us the struggles of their son. It was moving – I’ve been there. But Phil had questions. He saw a very sad parent. I am also that very sad parent. He asked a very pointed question. “Mom, do I make you that sad?”

How do you answer that? I know, I know…we hit them with the same logic that Christians hit sinners with…”We love you, we hate your sin.” Sounds even more pathetic when you are saying that to your son. “I love you, Phil…I hate the disease that is basically defining your life and killing you.” As much as we have tried NOT to define Phil by his disease – you cannot separate who you are from what you are. You cannot separate yourself from your reality. You are YOU – all of you, for good, for bad, for love, for fright….it’s all you. And I wanted to think long and hard about my answer.

He’s 12. That’s a tender, influential age in any kid. But one look at that face, questioning his affect on my happiness and somewhere from the center of my uncensored being the words, “Of course not!” come bubbling up. Because my soul knows the truth. My body and mind do not like the circumstances in which they find themselves or my son. But my heart and my spirit – they know what this is all about. They see this from the inside – from the top-side. They know the full truth of “Everything happens for a reason”, while it is completely lost on the brain. It’s only my physical part that cries in the night over all the strains this has put on my life, and all the struggles that are his to overcome. My spirit, on the other hand, is overjoyed to be spending a lifetime here with my friend Philip, regardless of his physical condition. We are pals and chums, slummin’ through life together, and helping each other out the best way we can, happy to be with one another. His body is just a little more wrecked than mine at this time. (Sometimes it feels like we’re aging together….”Oh…my aching back!” we say in unison when I’m lifting him…).

I let my spirit do the talking that day. “Phil, I LIKE you! You are far and away one of the coolest people I know. You make me very happy. Stuff happens that makes me sad – like your surgery. But I was sad because you were hurting. I want you to be happy. The fact that you are in a wheelchair, Champ, has nothing to do with how I feel about you as a person. Sometimes I will be sad about things that you can’t do, or the fact that you can’t walk and stuff, but then I think of how awesome it is just to hang out with you, and I’m happy again. It’s the ‘stuff’ that makes us sad, kid…it’s you that makes me happy.”

I’m not in denial about the facts of our life. I’m not blowing sunshine up his arse to make him feel good. It’s just the truth. I don’t see the need to burden a young boy with the heartaches of a mother in any situation, much less this one. Those are a fact of a grown-up life. What I want him to understand is that while our minds and bodies are stuck in the world of Duchenne, our hearts and spirits are having a grand time in the realm of relationship – and that’s all that truly matters. It may take him some time to grasp that – I’m just figuring it out now…

Hey, It's Good to Be Back Home Again...

Hey, It's Good to Be Back Home Again...

Posted Oct 21, 2010 11:28am

 

"Hey, It’s Good to Be Back Home Again…"

I had the pleasure of plugging in the headphones while packing up my eBay packages the other day and listening to a few John Denver songs, and this one graced the list. As I hummed along while taping on a label, “Hey, it’s good to be back home again…Sometimes this old farm feels like a long lost friend…”, I stopped mid project. I had to ask myself, “Really?” And what kind of long, lost friend would that be anyway?

As Phil recovers from his horrific surgery in nothing short of miraculous ways, I am finding that reality has taken on yet another facet. Like the diamond that life is, a few chisel blows and buffings later, we see evidence that we are moving toward a complete project – a stone that has more shape than it did when it was mined from the earth, and the promise that indeed, someday, it will rest in a setting that will enhance its features, beautifully stunning and shining in the light. But the process of getting there is starting to feel more like the pressures of the coal bed from whence it came!

Phil started back to school last Wednesday, and although we had to run over and help the teachers and aides transfer him, and educate them on his “care and feeding”, it has gone off without a hitch. He is happy to be back at school, back in the social order, and resuming what might loosely be called a schedule. And all is well.

For the most part.

The part that I share here; the part that I tell people about on the phone; the parts that are flowing smoothly; these parts are fine! I tell them about how awesome his scar looks, how his energy level is creeping back up to his normal and how we hope that it makes a full rebound. I tell them how he ate real food, and is adapting to his “robot arm”, and how we finally got an appointment for physical and occupational therapy!

But there are so many details I leave out. And that seems to be the case and course of this nasty disease. It’s 1001 little things that happen inside the four walls called “home” that simply do not bear repeating. Questions I have for which there are no answers forthcoming. How to deal with some of the extremely unique situations that Duchenne presents you with…well, you are pretty much on your own to learn the dance as you go.Which leaves you feeling like a bit of a spaz, as the music starts and you have no idea which way to step and move. You just gotta make it work.

I have put many questions to the chat groups, and received as many great answers, which are, in fact, just ideas on how I might retrofit what worked for one family into our own situation here. And sure, there are the “manuals” written, how to choose a proper hospital bed, commode, shower chair and wheelchair (as if Title 19 gives you a choice in the matter). How to cope with the losses and trials in the most generic of ways, because they simply cannot account for all the variables in a boy’s life. How to deal with the emotional and mental issues is a tip-toe through the mine field of human experience. No one knows what’s buried where. You are on your own, and the best you can hope for is a tip, or a helpful hint for cleaning up the damages when you got unlucky.

And it’s the little things. The things that are intensely personal, that you really don’t want to share. Things people will not “get” unless they have faced them first hand. Things that will no doubt bring judgment and condemnation for someone who is quite sure they would have handled it differently. Things that would invade the privacy of your son should you choose to go public with them, in areas such as personal hygiene or sexuality or emotional awareness. What is the barometer of “normal” here? By what do we measure our successes and failures? Are there any…really?

As a caregiver to one such as Phil, there are days I feel like Alice in Wonderland, down the rabbit hole, don’t remember how to get back out of it, and a whole new world of intensely strange creatures milling about. It’s not like being dropped into Russia, where if culture shock has you confused – you at least have the hope of finding someone who speaks English and everybody there is, at least, a human being. Here, it’s like another planet. Nothing functions the same – or precious little. But the commonalities are ultra-primitive, stripped down to the basics of life – eating, sleeping, locomotion, elimination. But these things, instead of being automatic as per my previous norm, are now the very focal points of a day. They are, in fact, all that seem to matter. And you find yourself talking about them non-stop, while the listeners stare rather dumbfoundedly. We don’t usually talk about “the automatics” with such intensity with the girls at the water cooler:

“Say, Linda, you will just HAVE to try this new way to transfer to the toilet! It’s so efficient!”

“Wow, Sandy, thanks for sharing that! That will really help avoid those little accidents that take 45 minutes to clean up.”

Now the four walls you call home have become a little microcosm of your former existence. A whole lot smaller, and that’s actually a blessing, because nobody wants the up-keep and cleaning of a million square feet on their to-do list, or an Everest of laundry – my 1800 feet is enough to keep up with, thank you. And contact with the outside world has been taken to a different level. I actually entertained a bill collector on the phone the other day just to talk about something “normal”, and rather enjoyed their squirming when I pleasantly answered every question with, “But there IS no money,” accenting different syllables with each question. Pretty soon, they have nothing more to say than “Have a nice day”.

By the time I hung up, however, I learned a little life lesson. That I just was not as upset as I normally would have been. It’s just money. When I have it, I’ll fork it over. But I don’t right now. Oh well. I have bigger things to freak out about, and I save my freak-outs for stuff that will be more gratifying than bills – where you feel like your freak-out paid off! For instance, Rachel called me this morning – ran out of gas. I did not at all feel like going out into the chill morning air, running for gas and standing on the highway. In another time, I might have been pissed. How irresponsible! We TOLD her about the gas situation! But as I donned my flannel, I figured, she learned. Will the lesson be driven home any further if I arrive spouting expletives and stomping my feet? Nah. Instead I just laughed at her. “Gambled and lost, eh?” What’s the big deal? It is, after all, a lovely fall morning, which I would not have had the chance to stand in otherwise.

I am in effect learning to put my life into a different perspective. Starting once again with baby steps – literally – back to the basics of life as mentioned above. Peeling away the layers of superficiality, assessing what really matters; what is most important in life. Deciding what I want to spend my energy on, and what is simply not worth the fit of pique. Scrubbing the politics, and the posturing, and in some cases having to challenge the limits of societally appropriate speech in exchange for getting one’s point across. Life is stripped down and bare at this point. There is nothing left to hide behind.

And so home is a good place for this be accomplished. It’s a different home than I remembered – or have experienced before, but it’s still home. And here I am this morning, parading about in my emotional underwear, a little less worried that someone might see me. We can do this in our homes. It’s our space. It’s our comfort zone. It’s safe here. And it IS good to be back home again.

Start Moving Along!!

Start Moving Along!!

Posted Oct 12, 2010 10:10am

 

It’s been more than a month now since we took the plunge into the surgical pool, and we’ve all come up on the other side, a little breathless, more than a little exhausted, but intact! The kids were watching a television show called, “I Shouldn’t Be Alive” last night, and I could not help but make small comparisons to our own situation here. No, we weren’t capsized in the Amazon by a rogue hippo, or attacked by alligators, or flesh eating ants, but it has definitely been a trip of twists and turns, ups and downs, and situations we did not foresee, and yet have to adapt to. But today was the hallmark day when we visited the hospital to get our gold star that says, “YOU MADE IT!”.

Sunday night, I planned to get up early, fold the laundry, take a shower, pack all my eBay stuff, get Phil up, give him a shower and get in the van by 8:30 and head out. Ha! Like THAT happened! No, it was more like I got up, let the dog out (who is almost completely potty trained now – YEA!), stumbled to the kitchen, made the coffee, and had two cigarettes while staring through bleary eyes at my computer screen which told me I had three more packages to pack and ship, Kohls is having yet another sale, and Office Max has coupons to print, giving me three cents off of an item that is overpriced by about 600%. Just a little too much on the plate, and Phil has reached a point where he is not always comfortable all the way through the night, and needs to be turned off his butt from time to time, so sleep commodities are at an all time high here, and we are on the wrong side of that investment!

But arise we did, got Phil dressed, gave him a quick sponge-over in true Sailors Shower fashion, smoothed down his hair that desperately needs to be cut, and off we went.

First stop at Children’s was the Surgery clinic, where we replaced his G-tube Mic-Key button. This was interesting, and Phil was great! He was afraid it would hurt, but managed to sit through it with nary a whimper! It did not hurt, after all, and he was happy to keep the old was as a souvenir. Gross – but he’s a 12-year-old boy…what did we expect?

Next stop, Orthopedics, where they took x-rays. Phil was prepared for having to lay down on the table, which would have been insanely uncomfortable, but we were pleasantly surprised when they told us they only needed him to sit up on a bench to take it. One transfer, two lead aprons and a breath hold later, they had what they needed, and we were off to consult with Dr. Tassone. When we got to the examining room, they wanted to know height and weight. Height was a little tricky, and weight has been reduced to anyone’s best guess. And even with primitive measuring techniques, Phil has officially grown 4+ inches. The nurse then popped the x-rays up on the computer screen, and told us the Dr. would be in shortly. Now, I know you are not supposed to toy with the computers in the examining rooms, but I could not resist mousing around all of his x-rays, the comparatives, the before and afters…resizing, zooming in…WOW! You just have to check out the two pics they sent us home with. And, uh…don’t tell Phil I posted them…he wants to take them to school first! He’s pretty impressed – and rightly so – with his fine array of no less than 37 screws! (Could be more – it’s an X-ray, after all…).

Dr. Tassone came in and gave Phil the once over, took in all our info regarding his healing, and then answered the list of questions we had for him, which were many. You don’t think of little things, like, will his back still “crack”? (I REALLY wanted to hear that it’s okay, because it sounded very chiropractic when we transferred him a few times – scary if it’s not supposed to do that!). What is his range of motion? No pelvic flexion or extension, or we could loosen or even break the rods at the lower back. We all agreed that a re-do was not something we wanted to do. We pointed out the little string that was hanging out the top of his scar, and he ruined my story about it being a zipper and plucked it out. He was given the go-ahead to head back into academia, and truthfully, I can’t wait! Phil has been cooped up long enough, and after today’s appointment with the new wheelchair company, I am thinking Wednesday would be a great time for him to return to his friends and teachers and rejoin the “real” world! He’s mastered enough video games for a lifetime – (my opinion…I’m sure we’ve not seen the last car theft on Grand Theft Auto. I’ll just be glad to not be humming the theme music to the Sims all freakin’ day either…).

Scripts were re-written for Occupational and Physical Therapy, and I have hooked up with a place in Sheboygan which can actually handle acute medical therapy, and therapists who do not see the prescription as a hot potato. I suspect I will hear from them today – (they actually return their calls!! Can you believe it??) – and we can set that up for Phil. Eating and playing have been challenges, but hats off to Phil for really being imaginative in his coping and adaptation to that! He still cannot eat completely independently, but really gives it the old college try before he asks for assistance. We have a ways to go before we will all be comfortable with transferring and toileting and dressing, but you’d be surprised how creative you can get. I’m looking forward to learning anything I can from people who deal with this on a daily basis.

Life here has changed. Oh, much of it is still the same. My daily to-do list is still more than can fit on a business sized envelope of household chores and appointments and phone calls and letters and e-mails and trying to figure out how to make the $400 in the checking account magically pay $2000 worth of bills…but there is a new dynamic to everything. Priorities have changed. Staples have changed; we’ve grown our list of critical items beyond things like straws and urinals to feeding supplies, a plethora of pillows, draw sheets, blankets, towels and washcloths, suction and cough-assist parts, under pads and snap-side pants. Bedtime is not a singular time anymore – it’s an hour or better of set up and transfer and fluff ‘n’ stuff, and repositioning to the Goldilocks standard of “Just Right” – something that needs to be taken into consideration when you are already dragging your tail at 8:00 p.m. Wake up, too. (We, in fact, hope we can get him to school on the bus – this will be an early reveille!) Little things like getting into the basement to do laundry or pack up an eBay item are weighed out against who can be upstairs with Phil, or how quickly you can accomplish it and make sure you can hear him if he calls. (I miss my iPod and my tunes – no more tuning out  ) Getting to the store for odds and ends is only happening with the assist of the teenage drivers – Rachel and Si – even at the cost of my insurance doubling for the privilege.

More than that, I have changed. Just prior to Phil’s surgery, a friend on Facebook posted the following quote from Elenore Roosevelt:
“Every time you meet a situation, though you think at the moment is an impossibility,
and you go through the tortures of the damned;
once you have met it and lived through it,
you find that forever after you are freer than you were before.”

I have not researched what trial produced those words for her, but this resonates with me. Especially the phrase “tortures of the damned”. I can think of no more descriptive words to convey the feeling you have when you are about the put your baby up on the altar of modern medicine. The thoughts your mind treats you to about “what if” and whether or not you are making the right decision. The depth and complexity of the issue overwhelm you, spiritually, emotionally, mentally and physically – BEFORE you have to go into battle! Argh!

But that was just more than a month ago. We battled. And this battle we WON!! Screw Duchenne – it may not be the war – but it was one kickass battle and WE WON!!! And today I feel covered in mud, scraped up, bruised and tired, I’m hungry and exhausted, depleted of energy, and done. But I also realized in the quiet – in the lack of the voices of fear… the realization that we WON! And I look up at Phil, and I smile…we won, buddy. We totally won this one. And I realize the truth of the final line of that quote. Forever after, we will be freer than we were before.

Secret to Life...There ain't no secret...

Posted Oct 4, 2010 10:48am

 

Nor is there anything that can be objectively called normal anymore. After a few weeks now of adjusting to what I have dubbed "The New Normal", all I can tell you is that there IS no normal, and there are no two days the same. Thus, the normal becomes the abnormal and negates itself. There you have it - no normal.
Okay, if that all sounds too philosophical, it is perhaps because I have been adjusting to the role of "Caretaker", and its 24/7 demands slowly, but by default, surely. And being home virtually all of the time now affords me the chance on multiple occasions throughout the day to just think. And my brain is either my best friend or my worst enemy.

On the UP side: Phil is doing utterly fantastic. He is completely off of his pain meds and has been for a number of days now. He has been up in his chair now for up to 7 hours (which was a stretch, but he did it, and not under duress like some days...). His back is bandage free, and he has enjoyed a few showers. He has surprised me with supreme healing abilities, and seemed a bit deflated when I told him his scar might not look as "cool" as the Frankenstein one fresh out of surgery! :-) I assured him this in no way subtracted from or diminished his Herculean feat of enduring this surgery.

Despite the therapy debacle, the school has totally stepped up to the plate with me, and until Phil is up to heading back to school, we have either PT, OT or a tutor coming every day of the week. Add THAT to the "normal" score card - now we have a schedule of sorts, and that means no lounging in bed until 11:00 for Phil! Conversely, no lounging in bed for us, either, which means no staying up until midnight or later, tucking in Winnie the Pooh just so, or trying to finish the dishes up. Nope - Mark and I have voted on establishing an official "bedtime". Lol...we'll see how well THAT works!

Still on the up side, the weather is divine, we all love fall, here, and the other kids have chipped in to help keep our ship afloat. Davita is getting up an hour early each day to clean up any kitchen mess that did not get cleaned up in the evening. Giovanni, being our resident Vidiot, is a great help in hanging out with Phil playing games and keeping him occupied while I tend to tasks that require more than 10 minutes of interrupted attention, and pretty much doing any other task we ask him to. Rachel has become our retail gal, filling in at the store to keep that CPR up. Josiah is our designated Go-fer and shopper - helps that he works at the grocery store. And they have all demonstrated a care and affection for their brother, which is all any mother could ask to see.

Now, I was about to write, "On the DOWN side..." and I realize I need to qualify that. Because by "down", I decidedly do not mean "bad", or "negative". No...think of it more as a roller coaster. The down side is the thrill - the fright - the adrenaline - the scream - Whooooosh!!!! For someone who has not been on a roller coaster since our Make-a-Wish trip (in, what? 2002?) you need to know that I am no roller coaster junkie, like my children are. There was a day – but the last coaster ride I took found me completely disheveled, declaring that, “I am too old for this shit!” I recall thinking that the ride felt for all the world like an organized plane crash. All the moves, with no chance of death or injury. I no longer have those thrill issues.

Having said that, the downs have been working with “The System” – or lack thereof. The therapy issue is STILL up in the air, and phone calls will be made this week to find out just whose phone I’m going to blow up. Phil REALLY needs to learn some new methods of dealing, here, and it needs to be dealt with now. Again, major kudos to the school for helping us out in that department! Another adrenaline rush I could have done without was dealing with Phil’s FORMER wheelchair company. Without aggravating you with the details, Phil’s chair died on June 24. They provided no loaner. We spent the entirety of our savings on a replacement chair for him. They have had NO contact with me since then, despite numerous messages left for them on the phones they never personally answer. After being notified that they have been replaced, the finally found the balls to call me and tell me they are coming to fix his chair – on October 5th. Imagine going without your legs that long. And there is the tiny matter of fact that his old chair is now completely obsolete. Our new provider is coming out on the 12th, so we shall see how that little saga continues to unfold.

I have also determined that despite being utterly, totally and perfectly worthless to date, I will, in fact, give the MDA one more chance to redeem themselves as anything more than a place to waste money. Won’t get too into that, but all that money in the fireman’s boot is simply going to some 6-digit earning researcher somewhere, and not to the poster children who pulled at your heartstrings on the brochures and telethons. So, next time you see the appeals and desire to donate, give me a call. I can tell you where to send that check, where some boy might actually have an improved quality of life as the result of your gift, rather than a meaningless “hope” for a cure that is a LONG way off. (Don’t start with me on this one – you will not win.)

Well, the PT is coming today, and the wake-up process needs to begin. I’ll post again soon – frightening how fast time is flying! But, what coaster ride doesn’t fly by…

Let the Games Begin....sigh...

Let the Games Begin....sigh...

Posted Sep 24, 2010 2:01am

 

Here’s a scenario for you: Phil has surgery. He can’t eat by himself anymore. He can’t draw very well in his chair anymore. He can’t lean over and retrieve his legos from more than a few inches away anymore. He can’t itch his legs or nose anymore. The medical people write up orders for Occupational Therapy (O.T.). These wonderful people help you with all of the above, and figuring out how to function with daily cares, and mundane little things like using cutlery and the toilet. (Not at the same time, of course).

But word has it that Phil is not eligible for this service. Of course no one knows why. No one knows just where the buck stopped, and why it has become the hot potato.

Well, what system that is even remotely functional refuses therapy for a kid in Phil’s situation? Ah-ha…it’s the “They” people…the abstract “They”, who from behind an Oz-ian curtain somewhere issue directives of service…or not. Who must lie awake at night thinking of ways in which they can stymie the progress of individuals afflicted with handicaps. Yeah…THEM.

So today, I set out in quest of “THEY”. I started with my Ombudsman, and was tossed about to and fro in the communication system somewhere in Madison, I suppose. The long and the short of it is that the Great State of Wisconsin never received the Holy Preauthorization to either sanction or shitcan. I was assured that should he have been denied this service, I would have gotten a letter stating why. So this version of THEY suggested I go back to the origin of the prescription and follow it back up the yellow brick road, and try to find out which field of poppies it might have fallen asleep in.

As if I don’t have enough to do…

Kudos to Phil’s teachers and school therapists who are coming to bat with me on this. These folks are the true definition of “No Child Left Behind” – in which case it’s not about the money or the statistics, it’s about Phil learning to function again….NOW, not after some grievance procedure has been put into place. Stay tuned for the next episode of “Therapy, therapy, who’s providing the therapy”…

After spending the morning hissing and spitting between calls and trying to maintain a polite and professional demeanor on the telephone, we decided that a walk about town was a great idea. Phil enjoyed the fresh air, but not the bumps on the sidewalk at all! We probably overshot our goal today, and even Sparky needed to ride the rest of the way home on Phil’s lap, but the change of scenery did us all some good!

Tomorrow we will probably take the bandages off for the last time before we let his back get some air. It has healed up beautifully so far, and Phil really wanted us to post the picture we did tonight. Hell-of-a keepsake for him, don’tcha think? Easily as cool as any tattoo!

I’m also posting a link for those with a stronger stomach and medical disposition. If anyone thinks that this kid was just to the doctor for a boil on his butt, I think I will have to sit them down and let them have a look-see at the pictures of spinal fusion. The person in the picture could very well have been Phil. Again…VERY GRAPHIC photos. You’ve been warned…but I know most folks are curious, and really do want to know….even if it freaks them out. Nature of the beast, I guess. Copy and paste:

http://www.medscape.com/content/2002/00/44/11/441199/441199_fig.html

Well, it’s almost 1:00 a.m. and Phil is still awake, but me…not so much. Scattered thoughts here – but I’m working on getting a handle on all of them, and getting them into their own brain space. One thing at a time…one day at a time. Say…there’s a good thought! On that note, I’m going to retire…Thank you again for your continued thoughts on Phil’s behalf!

Losses and Gains

Losses and Gains...

Posted Sep 20, 2010 2:43am

 

The roller coaster ride continues! It’s not been quite as smooth sailing as perhaps I thought it would be, this whole getting home thing. Oh, my, yes, it’s better than the hospital, and I’m thankful to be past the operation and the precarious first few days. But it’s getting ridiculous when the fact that you got to sleep for 3-1/2 hours straight sends you into a crying jag of happy tears.

The first thing on the list of losses here is the “normal”, and I am having more trouble than expected in establishing a NEW normal. I’ve always wanted a “reset” button in life! Well, here it is, and it’s really not all that fun! It is, after all, still the same game. It’s just taking more time than I want it to to find the center of our ever shrinking universe here. Time still means precious little, and being awake at 2:00 a.m. is on par with a heavy nap at 4:00 in the afternoon. Not sure if it is the priority of time or the brain fatigue, but we bought a dry-erase board for Phil’s room so that we could write down vital times, like meds, up in the chair, feeding, down to bed, inputs and outputs, etc. But I still forget to write stuff on the board. Not the first thing on my mind at 3:30 in the morning after fumbling with syringes and stomach tubes in the dark. It is getting better though!

It was a tough start today. Phil had been in bed without pain meds for quite some time, and was less than thrilled with the idea of getting up in his chair. The fighting ensued, but we won because: a) We are the grown folk, and we know better; b) We don’t feel his pain, and we know what’s best for him, and c) because we CAN get his happy ass out of bed and he can’t do a darn thing to stop us . He wheeled out to the kitchen and proceeded to attempt to play with his Legos. It was heartbreaking to watch him as he got progressively more frustrated. His arms are so weak, and he can’t hunch over any more. He has to re-learn or adapt to so many changes. As he said through his tears today, “It’s just not the same!”

This lead to a conversation about what he COULD do. Through much discussion, we decided he could go for a short ride in the van to Subway. He cheered up a little and fared well for the trip, even if it only resulted in him just nibbling on a corner of the $4.00 sandwich! When we got home, he got a call from his friend, Shayna, and that went a long way toward making him feel good, too. When the world gets smaller, people get bigger.

Through loss of sleep, and loss of independence, and loss of a big chunk of our world at the moment, we have made gains, too. Phil asked to look at pictures of this surgery. I could barely stomach the ones I found on Google, but he really wanted to see them. He sat staring at them for a long time. He said, “I really HAVE been through a lot, haven’t I?” Yeah, buddy, you have. But after that, the most amazing change of countenance came over him, and we spent the next half hour laughing over a goofy video he wanted to watch on YouTube, and movies we had seen, and Sparky’s antics. When he said he was really tired and wanted to go back to bed, it wasn’t with the whiny tone I have come to equate with a kid who’s short on pain meds. Rather, it was with the tone of a young man who knew he had reached his limit for the day, and politely requested to go back to bed. Homie is growing up…

I think I may have gained a little, too, on the sleep deficit last night! Just had it timed right that I was actually asleep whenever Phil was asleep. Like I said, 3-1/2 hours at one crack! How ‘bout that? Then twice in a row…why it was positively magical!

We have gained a new appreciation for the ladies from Rachel’s church who have been bringing meals for the family. I have big plans to get in the kitchen and inventory it so that I can actually cook again, but just when I feel like I don’t have the energy to pull a culinary McGyver and whip up a Beef Wellington out of stale potato chips and a bouillon cube, these wonderful women have showed up with the most marvelous creations. They are a credit to their faith, and words fail to express my gratitude!

We have made major strides in keeping the house clean, thanks to the incredible head start provided by my mother and sisters while we were at the hospital. I have managed to keep up with the laundry, and believe that I have washed enough sheets and towels this week alone to outfit a major metropolitan medical center.
Tomorrow is coming too soon, with a panic attack worth of phone calls and things to do and remember. Occupational Therapy is a priority – currently a bit of a hot potato for insurance reasons – (do NOT get me started…) – and preparing Phil for his Tuesday trip to Children’s for follow-up. With Mark off getting inventory for the store tomorrow, it will be my first whole day alone with Phil. Should prove interesting. Then there are all non-Phil issues; things that my late father would have called “keeping the ship afloat”. (For what it’s worth, Pa, we’re takin’ on water…but we’ve got out buckets… ).

Phil is still chatting with Mark as I write, about cameras and cars, and I know we are all ready to crash for the night. He has ended the night with a bowlful (albeit small…)of noodles, and a few sips of chocolate milk – real food! Yay! I’m going to end my night out the back door with a “real” cigarette and a look up at what I hope are stars. They serve to remind me that no matter how small our world is getting, it’s still part of the bigger plan. That is all I have to say. Let’s smoke a while….

I don't think we're in Kansas anymore...

I don't think we're in Kansas anymore...

Posted Sep 16, 2010 11:32pm

 

While I write this update, Mark is sitting next to me uploading some photos. I want to say at the outset that some may find some of them disturbing. I found them insanely disturbing at the time I was living them. And maybe that's why I've elected to post them. This little kid needs credit where credit is due. This was no small undertaking. I realize there are many kids who undergo scoliosis surgery, and it's gruesome every time. But a majority of the kids who do are 13 year old girls, whose entire goal is to get back on the cheerleading squad. The whole point here is to give Phil a few more years of breathing room. It's not about pity...it's about a from-the-bottom-of-my-heart "ATTA-BOY!".

Bringing Phil home has, indeed, has been eye opening for me. Eye shutting in the sense that I'm getting a little more sleep, but I feel rather displaced in my own life. You see, I came home to little things that had nothing to do with Phil. The water department came to read my meter, and subsequently called me asking me if I knew I had a leak somewhere. Good to live in a small town where they give you the courtesy call. They even came over and found it for me - the upstairs toilet. Due to it's leaking, we now have, like, a $1200 water bill. My phone is blown up with messages from the cell phone company, letting me know that they'd kinda like to get paid. Then my grocery wholesaler called me and wanted to know what I needed for the store. I want to just explain to them all breifly that, "Hey...I'm still traumatized here. I don't want to think about this stuff, I mean...I have to think about when the next dose of pain meds needs to be given, and how many cans of Ensure we have to feed yet and at what rate and that Phil has to be turned off his butt in about 15 minutes, and I should give him the Valium a half hour before we have to change the bandages. Don't you people GET it???"

And the Universe is quick to remind me that in fact it is ME who does not get it....yet. It will come. In time; each day I can see another element of the chaos turning into order. Slowly...but I do believe surely...we will come to make some sense out of this new reality.

The photos, then, only reinforce this belief. I see the photo of Phil, looking for all the world like he just got hit by one of the Mack trucks he adores. But the little man leaving the hospital just a week later has all the evidence I need to see that while there are some permanent scars on the body, you cannot hold back the spirit if it chooses to live. And for all the crap that Phil has to endure, he still wants to live. It then becomes a process of learning to live...one day at a time.

Nope - not in Kansas. Not sure just yet where we are, but I like to think that we are just visiting this plateau before we discover a much better place.

Gonna go caption the photos now while Phil is playing with some legos. Pain free at the moment, so we're going to enjoy that, and even get some sleep tonight!

Homecoming

Posted Sep 14, 2010 6:48pm

 

5:15 a.m.
"Mom?"

"Phil?" I acknowledge as I reach for my glasses.

"I really gotta go...bad!"

Only five words from bed to bedside...not bad. Haven't been that on the ball since infants. I wake Mark and he cranks to life and we take care of business with Phil. 550 cc later, the plan is briefly discussed: Let's get out for coffee now, take half this stuff down to the van, grab a quick smoke and be back for Orthopedic rounds. Phil WANTS to be repositioned...a huge milestone, actually. We roll him on his side and he's hurting. I find out from the nurse that Hercules here declined his pain meds during the night. Where are the nurses MY age???? So we rotate and medicate and start a new bag of Ensure for breakfast, and he's fast asleep as we step out the door.

6:35 a.m.
Orthopedics comes in. New resident this time that I have not yet met. Nice guy. Asks how Phil is doing, if I have any questions. I think, "Boy, DO I! But none you can answer," and say, "No, I think we're good here." He invites us to stay longer if we feel we need to. That sure was a different tune than we were hearing yesterday, kind of took me aback. I thanked them nonetheless, but said we were ready to leave.

7:26 a.m.
I am amazed at how a warm shower beats hot coffee for tricking your body and brain into thinking that you are awake. Mark showered up and took another load of stuff to the van while I took mine. He arrived back with more Parent Fuel in grande cups. We'll wake this tired butt up one way AND the other! In case it sounds like I'm whining about being so incredibly fatigued, I want to make it clear that at this point it's more like a fascinating study in sleep deprivation, which is not actually altogether unpleasant. I'm finding some strange things humorous, and having what must be some very amusing "deer-in-the-headlights" looks at people who ask me questions.

As I write, Respiratory comes in and offers to do another cough assist treatment for Phil, but we explain that we are good with it. We did it a few times yesterday ourselves when Phil got a little clogged from being tearful. She is happy, and will give the recommendation for discharge. Another check off the list.

8:18 a.m.
Got a good nurse today who just came in to check on Phil. He's Crash Carson right now. We talked about the goals for today, and she seems quite on the ball. The egg-crate mattress will be ordered up. The discharge planner will be in about 9:00. She's going to find all the prescriptions we need so we can get them over to the pharmacy - (can't call in narcotics, you know...). We went over the medications times so that we could "ace" Phil and get him up and in the van and home before he hurts again.

10:12 a.m.
Scripts were delivered promptly, and were dropped off at the pharmacy. While making the trip, we stopped off at the van to clean it up ad pack it tight, and I was quite dismayed that both my coffee and shower had failed to deliver on their promise of wakefulness. I supposed some protein would help, and we stopped at the cafe for an omelet. Not much of an appetite yet, but the cellular structure needed it. Mark took care of the store business for the day. We arrived back at the room to a very sleep Phil, and a nurse telling us that she contacted both the VNA and the discharge planner for us. We are ready for lift off! She ran to get the meds for the road, we are packing up the last of the stuff and getting Phil’s clothes ready to go....all I can manage is a subdued, "Yay..."

11:15 a.m.
With Phil properly medicated, we said good-bye to our nurses and headed down to the pharmacy to pick up his scripts. Mark went ahead and loaded the last of our knapsacks into the van, and was waiting with the camera when we came out of the Clinics building. Phil has gotten so much taller that his hair grazes the top of the van when he's getting in! Highway 45 never looked so good, and I hand Phil a scissors to cut off a wrist band that indicated that he was a "fall risk". I had told them that must be a mistake...he won't fall unless I drop him. The nurse informed me that this was standard for all patients. (Hmm, kind of like "Right turns obey this [stop] sign" ...bit of a "Duh!" situation...). He found he was able to slip if off his wrist without cutting it, but in something of a ribbon cutting ceremony, he snipped it anyway all by himself. He asked if it would be okay if he played his video games when he got home, and I assured him that would be more than fine with me! Not sure he will actually have the stamina, but that would be a great stop toward normalcy. The bumps in the road have him wincing a little, but all in all, I am tearfully happy to be going home.

5:34 p.m.
You know when you have to go to the bathroom REALLY bad and the toilet is in sight? Your body just kind of gets you to hurry up a bit? Well, here we are at home, and everything in my being is fully aware that my bed is in the next room…it’s calling me…

We got home around noon, and said hello to a very happy little Sparky! My house is like something out of better homes and gardens! My mom and sisters REALLY went to town here, and it has made coming home something of a treat! Can’t say I can recall all that I have been doing since then, but there was a small nappish thing before the nurse showed up to help change the bandage. Phil was nothing short of amazing! He sat and played his video games until 2:30 – which was decidedly over his limit, as he got kinda cranky. The kids came home from school, tho, and they all spent time with him in his room, talking and playing show and tell. The nurse came at 4:30 or so, and like I said, Phil hardly uttered a peep! A little fearful and questioning, but it went very smoothly, and his scar looks amazingly good – almost no drainage. Knock on wood!

Now in the 5:00 hour, we are fixing a pizza, and planning on…um….well…hmmm…would sitting and vegging be out of the question?

We are home…we are glad! Phil is actually smiling at the moment, and I THINK (precious little at this time) that I will spend the next day defining a groove to get into to see how we are going to transpose this new situation into our new reality! For now, I will post this, and thank you all once again for following along on Phil’s Journey.