February 27, 2015

When a parent dies- Fragile x Guardian

I didn't know if she had months or years left on this earth but her health was declining. I had heard it happens frequently after couples who have been together for decades are tragically separated by death.  Her beloved husband of some sixty years had died the previous year. It was decided now was the right time for her to transfer guardianship; a sad but necessary reality for aging parents with disabled children.

She looked into my eyes and said “I know you're going to take care of my baby girl.” After thirty plus years of friendship it was as simple as that. I nodded my head, making my promise to do just that. The details would be ironed out later. 

And so my guardianship began and my relationship with her daughter took on a new dimension. ( I will save my explanation of the actual guardian process, education requirements, attorney involvement, court involvement, background checks, and the paperwork required for another time and post) but i will say now that took roughly four months for the entire process to be completed.

And sadly one of my first tasks as guardian along with (her caretakers) was to began a coordinated effort to prepare her and see her thru the decline leading up to her mothers death. 

Coping with her mothers declining health was frightening for her at times. We needed to be sensitive to her emotional needs and respect her decisions and never force her to visit her mother if she wasn't feeling up to it. She did well however and visited quite regularly though for the next year.

Then the call came; mom had died. I quickly made arrangements for a flight out and coordinated with the house manager on how we would approach telling her that her mom had passed. 

The three of us sat together in close a circle in the office of the group home and I told her that her mother had gone to heaven. She looked down at the floor, my heart was breaking for her. I thought about the sadness we feel when someone we love dies, the anger, the tears and how missing them sometimes makes our insides hurt. Truthfully I was feeling a bit of all of those emotions myself having lost my dear friend. So I told her she may feel those thing herself and it was perfectly ok if she did.

The holding my breath I asked her “would you like to tell me how you feel?” She looked up and me and said as clear as a bell, “happy.” I was stunned! “Can you tell me why you're happy?” She has very limited verbal skills she usually can put three words together in a sentence but rarely more.  Then in a clear voice filled with conviction she said “ mommy and daddy are together, I'm happy

What a beautiful thing!

February 23, 2015

With this ring I remember..

Do you have a special object that evokes special memories of a special person or a wonderful time in your life?

I love stories. If I didn’t love tell stories I wouldn't be a blogger.

Most often the story behind the object is more valuable to me than the object itself.

My grandparents were immigrants living in Brooklyn N.Y, he was a baker she a stay at home mother of five. The 1920’s were not a very prosperous time for them, but they got by. There were not many luxuries in their home; probably the most valuable of their possessions was her wedding ring/engagement set and yet it was very modest by any means.

One day she lost her engagement ring.  

Popa went to the local jeweler and had him make a ring for Nana. I can imagine that the $25.00 he paid for it was a lot of money back then. Nana loved the sentiment, she loved the ring, it was sweet and beautiful with two hearts back to back but it wasn't her ring.

Did you ever dig in the cushions of the couch of change? My Dad did one day when he was about 12 and came up with something a bit more valuable than a few pennies he was looking for; he found my Nana’s engagement ring. 

She slipped that engagement back in its place on her finger and the heart ring on another finger and wore them both. She in fact wore the engagement ring until her death at 95 but the heart ring had a different fate.

Many older folks give treasured items to their loved in order to see them enjoy them as opposed to leaving them in a will.  She was a wonderful Grandmother who lived with us and was a tremendous part of my life. 

Years later Nana gave that heart ring to Daddy and he immediately passed it to me. I received that ring 38 years ago and have worn it every day. Sadly, Popa died when I was six. I know Nana and Daddy saw my joy when I was given that ring. Now that they've all passed I feel like I wear their hearts all the time glistening on my finger.  

There’s a great place I know about to get a ring or watch or piece of art to start a new memory by adding a new treasure to your family. There are some wonderful items there. Have you ever visited Invaluable Auctions?  Why not visit their website and check out their great selection of rings. 

Do you have a special piece of jewelry with that has a story worth telling? I'd love to hear it!

February 19, 2015

learning lessons- Fragile x Guardian

She is a joy!  She is usually smiling, she says" I'm happy" twenty times a day,  she loves music, loves to dance and adores food and eating out. I am a lucky woman to be able to be be her guardian  and her friend.  She lives in a beautiful group home, her roommates are truly her family, her team of caretakers love her to death and God has blessed with good health.

My girl was born with (fragile x) syndrome and she has many, but not all of these symptoms.

  • intellectual disabilities, ranging from mild to severe
  • attention deficit and hyperactivity, particularly in young children
  • anxiety and unstable mood
  • autistic behaviors
  • sensory integration problems, such as hypersensitivity to loud noises or bright lights
  • speech delay, with expressive language more severely affected than receptive language
  • seizures (epilepsy) affect about 25% of people with Fragile X
Recently one of her doctors decided on a course of treatment for which I did not understand or agree. Although I've have a lifetimes worth of opinions I am by no means unwilling to listen to a doctor’s reasons for treatment or medication. So I called and I faxed and I got no response, no explanation. NOTHING!

When I took over her guardianship, she had doctors in place and it never dawned on me to check on their credentials. 

Why would he decide on doing xyz and then refuse to discuss it with me? So me being me, I got suspicious and did background check of the doctor.

This doctor WAS and IS without question a criminal. He has a documented history of personal use/addition to drugs in two states. There is a record of malpractice, a history of prescribing adult psychiatric meds to children, he has been cited numerous times for over medicating venerable foster children in clinical drug trials by the FDA and he’d been arrested for drunk driving and possession of cocaine (and entered into a court diversion program).

It is beyond me how he was allowed to see patients with this record. And you can bet she will never ever enter his office again. 

I am bewildered with how the lenient medical licensing boards are with doctors and it is scary to think how our most vulnerable are at risk if exposed to these horrible doctors.

I needed to do a better job reviewing her health care providers; something I have come to regret. 
Do you check the background of your physicians?

February 16, 2015

sneaky folks

They rolled me into the operating room and the anesthesiologist said to me from behind.

” I’m putting a little something in your IV; you’re going to feel it in a second or two”.

We got into the operating room,  they asked me to scoot over from the gurney to the operating table, feeling no pain from the drugs I happily complied.

“I don’t remember feeling like this since I had a few to many beers at a party at my cousin Colleen’s house and fell up the stairs.” 

This I shared since apparently I become chatty Suzie on drugs.
I adjusted my pillow, my blankets..

“There you are, surgery went well, I was wondering when you were going to wake up.” I’ll get some ice for that foot”.

Those anesthesiologists are sneaky folks.

January 31, 2015

it went tick, clank bang and boom

It seems like every time I try to make an effort to get back to this blog the universe has another plan.

The other day I picked up my laptop to check on comments and see what was going on with some of my blog friends and I heard this noise... It sounded like a pebble was stuck in the fan of my laptop; then within minutes it progressed to a much louder sound more reminiscent to pots and pans being banged around inside my computer.

I remember thinking to myself, this is not good. So I took a chance and turned it off and then back on again while silently praying that it would actually work.

Hallelujah, it was actually ON and there was no sound!

That's when I noticed the white letters displayed on my screen "the main fan has failed - in order to not harm your system this machine will shut down automatically in 15 seconds".


I do not care to use my husbands desk top (that's his space)  and my smartphone is really not all that functional for writing blog posts. It has more to do with the fact that everything is so darn small and I'd just rather not squint or use a magnifying glass.

Needless to say my poor computer had to go the computer doctor (Russell) to be fixed.. and now thanks to him I'm back in business.

What do you do when your computer goes on the fritz?

January 20, 2015

Things that ha ha ha happen when you travel

You're going away on a trip; maybe it's spontaneous or a planned family vacation. Chances are you will be in an airport, or a hotel or both long before you'll  reach your ultimate goal.. that beach chair with a rum drink slathered with sun tan lotion.

In those places teaming with people anything can happen, you can bump into a neighbor, your high school gym teacher, your bunk mate from that summer camp thirty years ago. But I have come to the believe the most amusing things actually happen on those chance encounters with virtual strangers.

Here's what I mean....

You're sitting on a plane you get all comfortable, put your book in the seat back in front of you,  get your ear buds ready in case chatty Susie sits in next seat, you buckle up AND.....then the person next to you slips off their jacket and you GAG; holy crap doesn't this person know what deodorant is?  Of all the stinking luck!!

You're waiting for your flight and go to the bar for a beer and a burger. You're reviewing  in your mind how you made it thru security without event.You did not get felt up by a big very serious unattractive person...it's your lucky day....THEN  the person next to you says hello, you nod politely. Before you even take two sips of your beverage they're already ten years, two divorces and 140 alimony payments into their life story!  Can anyone say INDIGESTION?

You ran to the last gate because that's how it always is when you have a connecting flight.It is NEVER the first gate when you're in a hurry. They're just about to close the cabin doors but they let you in regardless. You're huffing and puffing as you plop in your seat then you glance out the window and apparently you're not the only one behind schedule. Mario Andretti baggage guy comes speeding across the tarmac luggage for the flight you've just gotten off in tow. As he's approaching you spot you're uniquely patterned luggage at the top of the heap. YIPPEE you think to yourself, a bit red faced you check to make sure you didn't actually yell that aloud. Right at that moment your attention is drawn back to Mario who begins to whip his truck more directly in the planes direction and as he turns your luggage hurls in the air and lands like a ton of bricks on the black surface.Say it all together now LOST LUGGAGE.

Your twenty something SON has two tickets to a concert and he asks you to go, A friend admittedly his first choice didn't care for this band but your happy to go anyway.You get a great place to stand by the railing overlooking the stage and not to far from the bar. The music is loud and the beer is cold and wet. When the concert is over and you both hit the fresh and air two words become a clear possibility.....DRUNK DRIVING. You glance to the left and VIOLA there is a very large and respectable hotel chain within walking distance from where you're standing. As you're checking in the front desk attendant asks you carefully avoiding full eye contact "Madame would you and your (throat clear) like one bed or two?"

Do you travel? Most people who do have a story.

Why not share it with us.

January 18, 2015

A vacancy in my house has been filled

I couldn't even begin to fill you in on all the stuff that happened during my blog break in one post.

But I'd love to tell you a bit about what and who was keeping me busy during those many months.

I will say this, it was interesting having a whole family move into our house.
It was actually kinda nice for my husband to have his daughter back here in the US after over a twenty year absence.
Now I won't lie to ya. I am giddy to have my house back and Bill and I love our space.

And we also love that our gas bill isn't huge anymore!!

My stepdaughter Barbara really is a lovely person. I'd like to think we became pretty close over the year + she was here. I found her to be a loving and attentive mother and wife. And we enjoyed an easy relationship agreeing early on who should do what and when in the house and I think made things run smoothly. And boy can this woman iron.

Her husband, George was gone working most of the time but God bless the man although very high strung which the opposite of me, we did have the same taste buds. When I got into the kitchen picky kids be darned or happy with mac n cheese and chicken nuggets,. He and I would always agree on food, how much spice, how much garlic, love of citrus,  what cheeses are the best and the wine, we even liked the same wine. And who doesn't like a man who is wonderfully respectful to your mother, he called her Ya-ya.

The boys, Nickolas and Andrea's, well I don't have to tell you they were adorable and just crawled into a space into my heart and my heart just aches with missing them since they've been gone. The are ten and fourteen and were my very special cookie maker and watcher of Supernatural buddies respectively. sigh....

Shortly after they moved out an orphan kitten showed up at our door. My heart just sang because this sad little fellow was looking for a home, isn't it lucky for him we had a vacancy?!

My friends, meet Eightball.

January 8, 2015

Brushing the cobwebs off this blog..

I was looking at the date of my last post and couldn't believe so many months had past since I'd been on this blog. When I wrote my last post When Life Trumps Blogging it was my intention to take a bit of a blog break since life was a bit crazy. It seems however time has really gotten away from me.

Believe me, life is very much back to normal and has been since the summer when our family/ house guests moved out.

To be honest I've just gotten out of practice writing and very lazy, hence no blog activity.

As I write this I can't help but wonder if more than a handful of you are even still checking this blog. I appreciate the comments and emails I've gotten over these past months weeks and days. It goes without saying but I'll say it anyway I missed you all and I appreciate your friendship! I look forward to catching up on what is new in your lives now that I'm back.

Leave a comment and say hi.
If you want tell me what's new.
I'd love to hear from you.