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.