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Showing posts from December, 2015

An Update

So I've been posting lately but not on how we are all doing. Over all we are holding our own. Taking everything one day at a time during a very hard time of year for people with neuromuscular diseases. Many people have asked how Ian is doing...over all ok. We have seen small signs of disease progression.  He is harder to understand, not in that his voice is softer, more in that he is having a harder time with certain words and letters. The "s" is the main one that comes to mind. Getting the words "side" and "yes" out have become difficult for him. I would say 5 out of 7 days he is taking a nap as well as going to sleep by 9:15 (yup that's early for him). He's also having a hard time with the loss of Joey, we are taking that one day at a time and helping him get through that. Becca is doing well. Currently, her grades are 5 A's and 2 B's. She just had a math test and was the only one to get an A. So proud of her. Girl scouts is going we…

24 Things People With Rare Diseases Wish Others Understood

Taken from http://themighty.com/

Right now an estimated 30 million Americans live with a rare disease. In the U.S., nearly 7,000 diseases are considered rare, and for most no cure exists and few (if any) effective treatments are available, according to the National Organization of Rare Disorders (NORD).

From the exhaustion of a diagnosis journey to the crippling feeling of being alone, those with rare diseases and their families face a lot of unique challenges that may be difficult for others to understand.

The Mighty teamed up with NORD to ask their Facebook community what they wish others understood about their experiences. Here's what they had to say:


I'd be more than happy to educate you if you ask about [my condition] rather than question it's existence.  -Katie DeMoreMost doctors have never heard or seen a patient with the disease.  -Nancy Reeder MartinSmiling doesn't mean I'm suddenly healed. It just means I'm choosing to stay as positive through the pain as…

Touch My Heart

Child
Touch my nose, my lips, my eyes
with your small hands.
Then touch my arms and chest.

Feel their shape
how real they are.

Now, touch my love.
No, not my chest or arms or lips.
You are puzzled.
How is one to touch love
and where is its place.

Love is not here or there
But who would
deny its reality.

Where does love reside
if it cannot be pointed to 
as with other limbs.

Is it less real than my chin?
If anything, love is sharper, harder, softer,
warmer than bodily things, objects I can touch.

There are matters not subject to the senses
taste, sound, smell, sight, touch
Matters elusive to definition
yet known without doubt.

Known to make us cry and laugh
to move us to unimagined heights
to courage and self-sacrifice.

Experiences - like love or G-D
Cannot be fingered, placed or poked.
Of such things
it is wiser to ask
not where but when.

Don't ask where is love
don't ask where is G-D
ask when is love
and when is G-d.

-Rabbi Harold Schulwies, z"l

A Huge Thank You Chai Lifeline

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Over the past few months, Chai Lifeline has done quite a few things for us.

First they designed a shutterfly book for Ian, covering his 3 years of Camp Simcha Special. There were pictures I had not seen over the years, something we will have forever to cherish the memories he has had at camp.






After a few months of planning, about 3 weeks ago, Brian and I got a wonderful night away at the Gramercy Mansion. Adena arranged everything, even care for Ian, Danny came into town to watch him. It was a quiet night of watching movies without worrying about the kids and who was taking care of them. We knew they were in good hands. Entertainment was provided for Ian, just for him, oh we know how he loved that. Becca had a great time at a friends sleepover party or she would have been home with Chai Lifeline as well.

Hanukkah has come and gone, hard to believe another year has past. But not without the wonderful Chai Lifeline Hanukkah Party. All the Baltimore and DC families were invited to the Worl…

Wii

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What's this Wii thing all about? The Spiderman game ...is the best!

Bling, Bling, Bling

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I found these shiny things laying around, don't they look good on me.

A Fishing We Will Go

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I WANT COFFEE

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What's this coffee thing about?

Anyone Have the Time?

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Isaac got into Brian's watches last night....for those of you who really know...you don't play with Daddy's watches....

Isaac's Back

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Isaac is back  On the 1st night he decided he wanted to go to school with Becca. Well that did not happen.  He stayed home where Ian could make sure he stayed out of trouble.

Joey 1998 - 2015

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Our beloved Joey went to heaven on Friday, December 4, 2015. She gave us 16 years of unconditional love. From a spunky puppy, to a vibrant adult to a frail elder dog, she was always there, knowing the right time to come give hugs and kisses. She will forever be our Joey.