March-ing Along - Quarterly Update

You know, I have been so wrapped up in so many things – between my mind, my heart, my tasks, my daily grind and my daily bread…today I just feel lost in space! It’s officially Spring, now, and my yard is coated in white stuff. It is also spring break here, so Phil is here with me all week. The rest of the kids have all kinds of plans, so it’s a rowdy parade of friends half the time, and a blissful silence the rest of the time – if you don’t mind the video games Phil is playing!  

Add to the fun the fact that this week the builders are remodeling the bathroom by putting in a roll-in shower, which is simply divine – but has us dashing up the stairs to use the loo and using bed baths for Phil.

Further complicating issues is the fact that we are in the process of closing my store – which is a bitter sweet good-bye. I will have a good cry once we’ve got all the final sales numbers  and the store cleaned out – lots of shelving and hopefully not too much excess merchandise.

In the midst of it all, I just woke up today feeling like, “I don’t think we are in Kansas anymore!” So, I guess today is a good day to do inventory on all that we have – and reflect a bit on the direction we are going. Despite all the chaos on deck, it’s a relatively calm day at sea, and so this captain is going to take the time today to write up our ships quarterly report.

The last quarter of last year brought Philip’s surgery, which was as polar shift in our life. The need to be here now 24/7 to take care of Phil has been quite the adjustment. We had to sacrifice the brick and mortar store because of it, and since January, we have been in the process of moving our business here into the home, shifting our focus to online sales, and eliminating the overhead, time and energy that is takes to run a business. It’s been an uncomfortable transition, but I think I have finally gotten around to seeing the far side of this gully – and I do believe there is greener grass over there! Bringing home all the lozier shelving from the store and putting in the basement has been quite the task, but is making the basement look so nice and organized! Mark has been busting his butt, but it’s worth it. The house still looks like a drop off for Good Will, but I am seeing spaces open up here and there – and it’s a good feeling!

Like so many people this time of year, we were victims of some wretched flu bug, and Phil scared the liver out of me with a cough and fever, but with the help of his handy-dandy million-dollar-machines, I think we triumphed over it this time! However, we are now scheduling a sleep study at Children’s to see if his overnight breathing is still up to speed. It’s just another stone on the Duchenne footpath, to make sure that his oxygen levels are not dropping at night yet – sooner or later they will, and we need to keep abreast of that.

I don’t remember much of February, but I know it involved a bank-breaking root canal for me, and  evidently we survived it okay. March brought us some delightful new additions; one being a fluffy little bundle of Pomeranian, brother to our dear friend Sparky who left us in January, named Smokey. Just as smart, but even more energetic than his late brother, we are enjoying his Napoleanesque fuzziness.

In early March we were invited to the party of a friend of ours, whose son, Zac also has Duchenne, and is scheduled for his spinal fusion this spring. Despite being on the edge of the flu, we made the trip to Menasha, and had a wonderful time meeting our friends in person for the first time. The Menasha Fire Department even showed up at the party with a big rig! This is also where we surprised Philip with his new buddy, Smokey. Despite spending the next week in virtual comas, we had a wonderful time.

Later the following week, however, Philip was surprised and delighted beyond all reason to receive an Xbox 360 with wireless as a gift, and now he can play games remotely with his new friend Zac, his brother Travis, and several other gamers on-line. While this may be seen by some as the ultimate, unnecessary technological toy, to a boy whose activities are so very, very limited and whose social life is a slim-to-none proposition, this game system has been a life line to a world of peers, where all thumbs are created equal, and he can shoot-‘em-up with the best of ‘em. I haven’t seen Phil this happy in quite some time. I’ll not stump about it at this time – but I cannot even begin to express the gratitude that this simple gift means to our family, and next time you feel the urge to help a family afflicted by Duchenne, save your check that will pay the toilet paper bill for the research organization that wants to cure this incurable disease, and see what you can do by way of simply blessing someone with something we really need and cannot afford. Hit me up if you get stuck on that – I have a list of names and needs longer than the list of genetic studies being done at this time. The joy of a simple blessing – from the ability to shower safely, enter and exit your home safely, to adaptive technology for our boys ever-limited function – makes us forget, if only for a while, that we are living with this disease. THAT is a cure to me! It’s these very random acts of kindness to me and mine that will result in a pay it forward of the grandest kind – some way, some day, some how – to ease the burden of our diagnoses. And here’s something the research teams don’t say often enough: THANK YOU!!!

Now, this past week we were happy to fit Philip with his brand new foot braces! (Camo, no less…). His feet have started to atrophy, and these little plastic wonders will help to keep them from turning in unnatural or uncomfortable direction for as long as we can keep him wearing them.

It’s harder than you think trying to keep an immobile body straight and symmetric! Phil also had the wheelchair company readjust his seating and order a new tray for his wheelchair, as he was starting to look a bit like the leaning tower of Philip, and his back started to bother him. We took him back to the surgeon last week and x-rays revealed everything is as it should be – he just needs his seating arrangement adjusted, and some scar desensitization on his back. Considering all that can go wrong – we were really happy with that!

Tis a good thing to have all that behind us, as we are moving into some high level activity for the next few weekends. Next weekend will be the last weekend of the store, and moving the rest of the stuff out of there to better resting places.

The weekend of April 1^st, we have been invited by U.S.S.A. to go turkey hunting up north, and we are excited for that. Once again, it will be a marathon of activity, but it will be an experience to remember! There will be other kids like Phil along this time, so I think he will really enjoy this. Mark is, of course, bringing the cameras, so we will be able to share the doings in video and picture format when we get back!

The second weekend of April, we will be headed to LaCrosse for a somewhat impromptu family reunion with my siblings, which is a relatively rare occurrence, with there being nine of us, and we are very much looking forward to that. After that, I think we will need a vacation, which in my mind will be nothing more than sitting home, cooking dinner and watching Netflix. Although there is nothing like having a bathroom remodel to inspire you to want to re-do the entire house, and since it looks like we will be camped in Random Lake for quite some time, then I might as well be about the business of decorating our castle with a little Feng Shui – and with the promise of Spring, that means the yard, too….yikes. Oh yes, and about this time there will be a decent ramp being installed outside, too!

After that…who knows? The remainder of this year should prove to be an interesting one, going full speed ahead into the Wonderful World of eBay, and going through whatever doors open for us, and bidding a fond farewell to the ones that close behind us.

Life is short – Life is scary at times; Life is uncertain – and life is an adventure. But today, just trying to sort out some of the events and circumstances of the past few months I can tell you this – the LIFE IS GOOD!! Take a moment, look around you, and believe it!