Wednesday, July 9, 2014


Vacation week is over and for me it didn’t really feel like a vacation just a change of scenery at the lake.  That’s the downfall of not working, there doesn’t seem like there is a vacation. Once I returned from the lake there has been a lot to full-fil my OCD tendencies, trying to get everything back in order from the kitchen counter top and back splash demo. No time to blog/write. And now I need to take the next step, can I save the old wet plaster walls – that’s gonna create a lot of dust no matter what we do save them or replace them with dry wall.

Austin’s numbers from his now monthly draw look good, hemoglobin is at 15.2 (last one was 15.3), that is the true purpose of this entry just to do an Austin update.  He started his summer program with VIP this week so he’s busy and very excited about going to Turtle Cove tomorrow (boy I give the lovely folks at VIP a lot of kudos, a water park field trip with children and young adults with various disabilities, they are so awesome).

Maybe when I get everything caught up (LMAO) and the FXAM Quarterly Newsletter done I’ll do a serious blog J This is really rather funny because once I get this all done it will be time to prepare for Genevieve's hockey trip to Boston - now that might be a little vacation time for Gen and I. 
Jon and Owen came up for a visit on Monday and Tuesday

Just like his dad, he loves to fish!

Monday evening Jon, Owen and Genevieve took the pontoon out fishing. 
The summer place, if I count the time my parents owned their place (just across the road from mine) when I was young, next year I will have spent 50 years at Vinings Trailer Park - my goodness I must be old

Thursday, June 26, 2014

Is Summer Vacation an Oxymoron?

ox·y·mo·ron noun \ˌäk-sē-ˈmȯr-ˌän\

a combination of contradictory or incongruous words (as cruel kindness); broadly :  something (as a concept) that is made up of contradictory or incongruous elements

I’m not sure about you but lately I don’t feel like I’ve been on vacation, the summer has been very busy, long days of working hard and a few days (or should I say hours) of playing hard. Since I quit working in 2001 it’s often felt like I’ve not only lost my house cleaning team but I lost vacation days and paid holidaysJ.

I know it’s been sometime since I’ve done an Austin update so before time gets away from me again I thought I’d do a quick update. Really not working is not boring there are still a few days when it feels like there is never enough hours in the day to accomplish all that I want to do. And through it all I don't try to live my life through my computer and phone, there is so much more to life than emails, texts, facebook, twitter and all that other stuff that has little impact on those around you, which in the end only takes me away from the present and building those future memories.  

We had our appointment in Mid-June with Hematology, all numbers in his CBC w/differentials look good. Knock on would – we haven’t seen any of the complications associated with a splenectomy. As of our appointment we only have to have blood draws once a month now, next one will be July 8, just one more thing to put on the big calendar of life to make sure I don’t lose track of when the last one was done and when the next one is due.  When it was once a week I didn’t have any problems remembering.

Remember I am a “senior in training” so I’ve got these little quirks occasionally when I’ll walk upstairs and forget what I went up there for, walk all the way back down and then remember what I was going to do.  I call this “senior exercise” when you have a two story house with a basement.

I’m starting to plan Gen’s next hockey trip, in less than a month we will be in Boston for another tournament, we are both looking forward to this trip, we had so much fun last year, and for me it’s a great break from routine in the middle of summer.  Then I looked ahead to August and was surprised that driving to Vermont isn’t really much further than Boston (as long as we hit the Toronto area at the right time as we cut across Canada), and after making those two trips Stoney Creek – Ontario, Cleveland – Ohio and Ottawa – Ontario (two tournaments in September and Ottawa is the first one in October) should feel like a walk in the park.  I’ll cover as much as the fair weather traveling as I can and I’ll leave Jer with the snow storms.

And now it’s 9:40 p.m. and as a “senior-in-training” I think I’m going to call it day. Even though I don’t have to get up early sometimes I’m wide awake and ready to go at 6 a.m. I think that comes with age too.  You’ll really know I’m getting this down pat if I make Gen go to dinner at 4 p.m. in our travelsJ.  I figure in a little over three years when I turn 60 I should have this down pat

Good thing “Hair is for dying, and Life is for Living” 

Thursday, June 12, 2014

Don’t sweat the small stuff

Self-talk often helps, so when you see me wandering around just talking to myself don’t judge me, I’m just trying to keep my sanity.

I’ve been in this old house for a very long time and in the beginning we had made some improvements and then all of a sudden it’s felt liked we’ve stalled, for years.  Naturally, we’ll blame it on the kids and my hubby has also blamed it on me (I was the one who decided to quit working in 2001 and I still have no regrets about that decision although I do miss my cleaning crew quite often J) and I’ll blame it on Jer, he’s always saving for retirement, I swear he wasn’t born in ’65 but he must have lived through the great depression, he doesn’t like to carry any debt, he’s a cash man.

So we’ve started changes, and we have planned some big changes into the next year (roof - again 20 years passes pretty quick and new siding.)

We are starting in the kitchen since I still have the same old Formica counter top that was in the house when I first moved in – it’s time. 

Updates were done in the 90’s and 00’s in the Kitchen (but like I said 20 years passes very quickly), Jerry can be quite handy when he has the time, I love the custom cabinets he built, and I love when he re-did the window and door trims, but when whoops (aka Genevieve) came along it seems like everything stalled (I didn’t realize child #4 would have such an impact.)

Years ago faux wall paper paneling was put up in the kitchen (actually twice in one year because I burnt the nipples – baby bottle nipples – boiling them in a small pan when I got a little distracted and the water evaporated – amazing how six little nipples could cause so much smoke damage). I plan to have the paneling removed and I had hoped to restore the wet plaster walls. 

To prep for the new countertop and back-splash Jer has removed some of the paneling and my heart sank just a little, construction adhesive was used, I’m not sure if we’ll be able to save and refinish the wet plaster (I will call in the experts and then I’ll need to determine if we save or if we gut and just replace with drywall).
The difficult part in all of this for me will probably be the passing of time from start to finish. Countertop, Sink, back-splash first, then the wall demo and repair and lastly I’ll move to the floor. The last time I did the floor I did all the demo and prep work for the new floor, was surprised when I removed the linoleum to find much older floor material probably from the 50’s and of course under that was the old hardwood.

That was back in the days when I had a lot of energy, 20+ years also has had an impact on my energy level.  And I chuckle every time I hear Jerry say how sometimes things seem so much more difficult or intense to accomplish, how he feels it so much more the next day. Then, of course, I remind him you’re preaching to the choir, I am 8 years your senior, just wait until you’re my age J.

Right now I just need to keep my OCD in check, to remove some of the paneling Jer removed some of the cupboard doors, honestly it’s driving me nuts every time I’m in the kitchen because I want to close the doors.  Self-talk isn’t helping.  I actually think I’m going to have him put the upper doors back on and if he won’t, I’ll do it.  I’ll have to continue with the self-talk, deep breath, eventually it will be done, the master plan will all work out and in the end I’ll be happy. I’m happy already that I’ve got Jer spending a little J

Funny story about the new sink, I picked one out I liked at Menards, Jer found the same sink online but cheaper, we ordered – didn’t know the seller was going through a third-party, third-party shipped the wrong sink, low-end.  When we contacted the seller they discovered that the third-party changed their inventory without notifying them and they gave us a full refund and told us to keep the sink (which I’m not going to use, not sure what we’ll do with it yet). Now that’s customer service.  Honestly, I would have been very happy if they would have just gave us the credit and sent us a return shipping label.  So I have a double-sink, looking for a new home at a much discounted price.

But for now, I’ll just keep taking those deep breaths, it will pass, the end will come – at least for this project until it will be time to start another. 
Please close the cupboard doors :-), you can see all the construction adhesive on the walls under the paneling.

Jer, years ago refinished the door and replaced the trim, this will stay. 

Number One reason for the wall demo, there is just dead space above the fridge, I want to open it up some, also I don't want to be limited on the height of the fridge.  
For the most part the cupboards have held up well, after all they are Jerry Built, who would expect anything else.

I love the detail Jerry put into the replacement trim, if only he had time to do more window trim in the house, the honey do list could be huge. 

Monday, June 9, 2014

Missed Turns

What’s one of my favorite things about traveling with Genevieve to unknown cities for hockey tournaments – it’s the missed or wrong turns.

Even with maps and Tom-Toms (GPS) I am sure of one thing on every trip we take together; there will be at least one missed turn, at least one time in which we will make a loop-de-loop as I call it.

Our journey to Brampton was pretty low-key, we arrived at the hotel with no problems.  It was almost eight in the evening and we still hadn’t ate dinner. She wanted to go somewhere where she could watch the hockey game (go figure) and picked Kelseys as her top choice.  I didn’t plug it into the Tom-Tom, I had done a quick search on before we left and the directions seemed simple enough.  With a quick glance I thought the step-by-step directions would be all I needed so I only printed the steps (trying to be green and not waste paper or printer-ink.)

After two right turns, as listed on the directions, the directions (while driving) just didn’t make sense to me. I thought the restaurant was much closer, so I pulled off into a strip mall area and plugged the address into the Tom-Tom which still sent us in the same direction we were heading. 

The next right turn we started laughing because we ended up on the same major road we had taken off the highway to go to the hotel, with bumper-to-bumper traffic we realized we had just done a huge circle. And then we laughed even more when we thought of WWDD (What Would Dad Do) he would have been cursing a blue streak by now.  It ended up the restaurant was only about a block-and-a-half from our hotel.  Through this adventure we discovered/realized that from numerous streets in the Toronto suburbs you just can’t do a left turn, on major roads left turns are not frequent, often your only option is to turn right. Left turns are only allowed at major intersections with lights. We laughed even more on the way back to the hotel because what took us 30 minutes to get to our destination only took us a few minutes for the return trip.

We had a few other mishaps during our weekend, a GPS is great for locating a restaurant based on an address but sometimes a little misleading when you can see the restaurant but the address has no entry way from the road you are on, in our book just another reason for a loop-de-loop.

My lesson to Genevieve during this trip was that in life we will make a few wrong turns, a few wrong choices, but that doesn’t mean it’s the end of the world. It doesn’t mean we need to stress out, there is no need to fall apart or meltdown. It just means we need to do a loop-de-loop and follow a different path.  With a few extra turns, a few extra steps we can still arrive at our destination. In life there will always be a few learning curves and they don’t have to be crushing, they don’t have to be negative.  Life in my book is always meant to be an adventure.

As common in many of our trips together, by the end of our stay we got really good at navigating around our little area of Brampton. We mastered the learning curve and found the short-cuts, the side streets to navigate that same journey that took 30 minutes the first night to only take a few minutes in the end.

And, through it all I still chuckle, because if I just would have done it the old-fashioned way, asked for directions from the hotel staff, instead of relying on the GPS or map directions, we might have shortened that first trip right off the bat. There are days I think old-school, no electronics, doesn’t really get the credit it deserves. 

Friday, May 23, 2014

The Straw that Broke the Camel’s Back

“The final difficulty in a series; the last little burden or problem that causes everything to collapse. (From the image of a camel being loaded down with much weight. Finally, at some point, one more straw will be too much and the camel's back will break.)”

Last weekend Jerry and I watched “Last Vegas” and in explaining some of the highlights of the movie Jerry voted his favorite line as being Morgan (Archie) Freeman’s line “"Billy, I have a hemorrhoid that's 32 years old!" – this was his response to learning that Michael (Billy) Douglas's fiancé is only 32”. And we only laughed more when the girls asked “What’s a hemorrhoid?”

This silly conversation brought back a few vivid memories. Yes, memories of hemorrhoids.

When I was 21, in the service stationed in Italy, I was pregnant with my first child which sadly ended in a miscarriage and right after the miscarriage I developed hemorrhoids and was simply informed that hemorrhoids are quite common during pregnancy. This is one very small sample of a little straw that broke my back. At twenty-one I thought roids were only something old people dealt with and in my world they didn’t exist.  I’m sure it’s a conversation my mother won’t forget at least I won’t because I called international and blubbered on the phone for ten minutes to the tune of $70, only to have a conversation with my mom because I had hemorrhoids.  Honestly I was more upset that it happened after the miscarriage, I think if I wouldn’t have had the miscarriage I could have handled the roids.

And now I’m thinking of that straw and reminding myself I’m the one who needs to determine how heavy it should be or even if there will be a straw that breaks the camel’s back.

I’ve got Austin’s last blood draw results always lurking in the back of my mind and I just try to keep it in the back but it is always there.

We’ve had two wetting accidents during the night this week, another conversation one doesn’t typically have when talking about their 22 year-old son but it is what it is, it’s part of my reality. This is not normal so it makes me wonder what’s going on. Do I need to buckle up and get ready for another wild adventure? When dealing with it I thought of the straw that broke the camel’s back. I’ll be honest there are times the simplest thing could be that straw – if I let it. There are times in this journey with Austin, with fragile X and autism, that I’d like to just throw my hands in the air and surrender. But it all comes down to one thing - I’ve decided that’s not who I am, my unconditional love for Austin will move us forward.

And on that note, I’m probably going to drive Ms. Natalie crazy because I’m rocking out to “Love Runs Out” by OneRepublic because this love is never gonna run out.

"I'll be your light, your match, your burning sun,
I'll be the bright, in black that's makin' you run.
And we'll feel alright, and we'll feel alright,
'Cause we'll work it out, yes, we'll work it out.
And we'll start a fire, and we'll shut it down,
'Til the love runs out, 'til the love runs out.

'Til the love runs out."

Love Runs Out - Audio

Tuesday, May 13, 2014

Word of the day

 adjective \ˈvi-jə-lənt\
: carefully noticing problems or signs of danger
Full Definition of VIGILANT
:  alertly watchful especially to avoid danger

Test results are in, numbers look good, and hemoglobin is the same as it was two weeks ago at 15.3 but a new diagnosis/comment appeared on the test results in the RBC Comment area – Acanthocytosis.

“Acanthocytosis is a condition characterized by the presence of abnormally-shaped red blood cells called acanthocytes. Signs and symptoms more commonly reported include a history of chronic diarrhea with pale, foul-smelling, and bulky stools; loss of appetite and vomiting; and slow weight gain and decreased growth. Some individuals may have ataxia, tremors, and visual abnormalities; or jaundice, abdominal pain, pallor, dark urine, and recurrent infections. Although acanthocytosis has been associated with a number of both inherited and acquired conditions, it most commonly occurs with abetalipoproteinemia and hemolytic anemia of severe liver disease. Treatment for acanthocytosis depends on the underlying condition the affected individual has.”

Just another rare disease we'll add to our list. 

I can only remain vigilant; I’ll try to remember to occasionally monitor his urine and stools.  Typical for Austin it’s often difficult to identify if there is something going on.  Even as a young child he quickly learned what to do to possibly avoid doing things he didn’t want to do or as an out to get out of a situation that because of anxiety needed to escape from. An excuse to go to the bathroom or an “I’m gonna get sick” statement was quite common.  At this time I haven’t seen any signs or symptoms but I do believe I might need to be just a little more attentive.

The reference above to hemolytic anemia is just a reminder that even though his numbers look good we may not be out of the woods yet.  I do wonder if we will ever be out of the woods.  As the docs have repeatedly told me there is no crystal ball, they nor I can predict the future.

Next doctor’s appointment is June 16th unless something drastically changes.

And on another note, I am so over the Spiderman glasses.  Everywhere we go he has them on – now that’s normal, mom being annoyed by how he obsesses over certain things. I've even tried joining him but it's just not working for me - LOL.  I think Natalie wears them best. 

Monday, April 28, 2014

Back to Good ...

It’s almost been five months since Austin’s not been in school; it was sweet to send him back today.

I must admit I had a slight lump in my throat and a knot in my stomach, this felt like such a big step, a big adjustment for both of us.  Austin, like many with autism and fragile X is a creature of routine and he grew quite fond of hanging with mom for the last five months.

He was dressed and ready to go about ten minutes early and did well with the waiting.

We got to the doors a little early and his aide wasn’t out there to greet him but there was no holding him back at this point.  I just asked – “Do you know where to go?” to which he replied “yep”.

My morning began with errands and phone calls, some outside of the normal routine.  I dropped our fee for the ambulance service bill for the breathing treatment (after the pepper spray incident at the school) to the board of ed, they said they’d submit the $100 fee through their insurance.  At home it was once again time to call the Henry Ford Health Systems billing service but not our typical call this time I had to make sure I wasn’t overpaid.  Saturday we received a check because we paid for services that ended up being covered by Hap and Medicaid.  There was no breakdown of what it covered so I only wanted to confirm we weren’t overpaid, that somehow the ER visits in which Hap did cover the co-pays weren’t included – that call went pretty smoothly.

Next I did a little shopping and banking, while packing Austin’s snacks in the morning it was evident that we wouldn’t have enough special treats to get through the week.  When I did arrive home I did what I’ve wanted to do for the last four months, turn the music up and dance J

I didn’t realize how much I missed my alone time with music until I had the opportunity today to sing and dance alone in my living room J. Two songs in and the phone rang (thankfully I was in the kitchen, next to the phone and heard it otherwise I might have gone on the “bad mommy list” for ignoring calls from school).  It was the school nurse, right after lunch Austin got a little sick. 

Now, I know Austin pretty well, we do have a little history together. I know what a sensitive gag reflux he has, I know if he eats too fast we will have consequences and I know he will at times try to manipulate us, manipulate situations – maybe just a little.  I’m sure he missed me and after a brief conversation with the nurse and with Austin it was decided he would ride the day out (I always pick him up early so he only had about 1.5 hours to go). 

So mom got back to her music, which was so much fun.  I use Gen’s old iPod in which I have some of her music and mine, when it shuffles it’s always interesting.  I think I covered five decades of music and almost every genre. The shuffle was quite interesting since we’d jump from the 80’s with the Eurythmics, to the 70s with Edwin Starr, to present day with a little S&M from Rhianna and I had a little fun with One Direction too. 

Austin did manage the rest of the day with no problems and as a reward I let him get a happy meal on the way home. The History Channel is once again on the TV and all is well.

Normal is going to feel good, normal I hope will last and “normal” will only be how I decide to define “normal” – it has so very many meanings.  Even the call from the nurse reminded me of normal - it is what it is. Looking forward to tomorrow morning and a few more tunes with the iPod on shuffle let my new and old normal begin again.