Saturday, December 26, 2015
Friday, December 18, 2015
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 well. About 3 months ago she started horseback riding, and last week she jumped for the 1st time. She was ecstatic and we couldn't be more proud of how she is doing. She seems to be handling the loss of Joey ok.
As for Brian and I, we are doing ok. That seems to be how I am describing everything, "ok". I guess when you consider everything we go through on a daily basis, we are doing ok. Can't be doing great, afterall, we do have 2 pre-teens in the house, who both have the attitudes. All the while we are slowing watching one of them die...so we are doing ok.
As 2016 approaches, we will continue to do ok and grieve the things we need to as we treasure yesterday, dream of tomorrow but live for today.
Wednesday, December 16, 2015
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 DeMore
- Most doctors have never heard or seen a patient with the disease. -Nancy Reeder Martin
- Smiling doesn't mean I'm suddenly healed. It just means I'm choosing to stay as positive through the pain as possible. -Evan Mundine
- Do not give advice to people with rare diseases. I know more about my disease than my own doctor does so please think before attempting to give advice. -Brittney Peebles
- People who hear you have a condition should never say, "Well at least it's not cancer." -Cheryl Olenczak
- They are only "rare" until they happen to you or a loved one. -Bob Longhorn
- Just because what you're experiencing doesn't fit into an easily diagnosable box doesn't mean you should be easily dismissed and overlooked. -Megan Wirts
- Fundraising is a big deal because government funding is scarce or nonexistent. -Rebecca Brewster
- I wish people wouldn't say, "Ahhh, I hope you feel better soon" like it's the flu! -Lauri Morris
- Nothing about rare diseases is simple -- not a diagnosis, not the daily care, not the long term. If you really want to know about my child, it's not a one sentence answer. -Elizabeth Grehl Breden
- Physicians need to understand that we likely know more about our disease than they do. They need to actually listen to us! Be compassionate and understanding. -Renee Walchak L'Ecuyer
- It feels incredibly isolating to want to help your child and not be able to because even the doctors don't know what's wrong. To not have someone who understands because there is nobody like your child. To not be able to have a treatment plan because there is no diagnosis. -Susie Stretton
- People can just be a good friend and listen and be there for you; they don't have to try to relate by saying they know someone who has the same thing. Hence the word "rare". -Jill Ritchey
- Sometimes you have a name that everyone knows (i.e. epilepsy), but a rare presentation of it (i.e. Lennox Gastaut syndrome) that means you don't qualify for studies and the meds don't work. It's a terribly isolating and frustrating place to be in medically, and the generic name doesn't give the correct picture to the public. -Kelly Shaughnessy Morris
- One in a million' means it's possible. And those "ones" need to count. -Hailey Remigio
- You may never really get a full diagnosis and/or prognosis. -Jessica Taylor
- I wish people who can't see your illness wouldn't judge. - Daen Dawneedo Frascati
- It can't be fixed by a simple visit to the doctor. There isn't a drug or something that can be given to cure it. It's always there and without research it always will be. -Sylvia Marsden
- To be able to talk to and meet fellow patients and have a conversation about our disorder without having to try to explain what it is is extremely valuable. -Neil Smith
- Some of your coworkers, neighbors, and friends who appear to be living "normal" productive lives are also living with rare disorders. I bet most people know (often without realizing it) at least one person who lives with a rare disorder. -Lisa McClellan Lucius
- We enjoy the confused look on [your] faces when we tell [you] the name of our illness/es! "Neuromye-what?" -Helen Lear
- Just because a doctor/pediatrician/ER staff hasn't heard of a disorder doesn't mean it doesn't exist. -Brittany Lazechko Alley
- Our caregivers go through so many sacrifices caring for us! It's a thankless job and I know I don't say "thank you," but I would not be where I am without them! -Mary Lou Briggs
- You will do and learn things you never thought possible. "Hope" means so much more since sometimes that is all you have. -Nicole Vallier
Tuesday, December 15, 2015
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
Monday, December 14, 2015
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.
|Ian going through the Welcome Tunnel his 1st year of camp.|
|Ian having fun.....well maybe.|
|Ian, with some of the guys and medical staff, getting ready to go for a swim....he looks thrilled...but when all was said and done had a great time. And even went in a 2nd time.|
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 World Trade Center in Baltimore for some dancing, arts and crafts and goodies. Unfortunately, Ian was not feeling well that day so he stayed home with Brian and Becca and I went. Each family got a bag full of gifts which were picked out just for them. Governor Larry Hogan was there to help all of us celebrate. Becca and I even got on the dance floor for a little bit.