Thursday, June 16, 2011

This is it....

From now on you can find us at:
our new family blog!

Sunday, June 05, 2011

Day at the beach...the last post

I recently took a Monday off to go with Jim and kids on a field trip to Hearst Castle.  It was a lovely, lovely day.  The tour was great, the kids were much more engaged than I expected.  After wards, the four us hit the beach and a really good hamburger grill in Cambria.  I hope you enjoy these photos as much as I do, it's my last post for this family for our new blog to come your way soon!

Friday, May 27, 2011

Multiple Sclerosis is...

living a life you never intended.
a body that doesn't always do as you intend, and sometimes does the exact opposite.
fatigue. all. day. long. everyday.
trying out medications that cause flu-like symptoms. every week.
deciding those medications are not really worth it and seeking other help.
steroids, they really fuck with you.
forgetting: everything.
being impatient.
being pissed off that you are always impatient.
wishing people would educate themselves.
knowing you should educate yourself more.
putting the little girl in preschool, first two mornings per week then four or five.
letting the little boy watch tons and tons of t.v., just to get through the day.
bands of tightness around yours legs and midsection.
blind spots in your vision.
weakness and muscle loss.
a sensation that the bottom of your feet are burning. constantly.
loss of sensation.
loss of balance.
loss of coordination.
randomly sounding drunk due to slurred speech.
losing words.
cognitive problems.
 missing steps and kicking furniture because you've lost your feet, you really don't know where they will land.  stubbing every toe on your poor tired feet over and over again.
so damn scary.
saying no to wrestling with the little boy, again and again.
feeling so sad and regretful when he says, "you ALWAYS say that!".
help.  family and friends offering more than you imagined you needed.
saying yes to help, and more help.  to food, to childcare, to time, to a listening ear.
finally taking the walk.
calling a hotline, finally talking to someone else who knows exactly what you mean.
online support groups, for the the boy who needs so much support from others who are experiencing what he is and for the girl who needs support from those who are experiencing what she is.
reading and reading and reading.  reading about diet and research and the experience of others with MS.
lashing out because you are so hurt and angry.
realizing that one more baby, one you both so badly want is probably just another dream you will let go of.
letting go of many many dreams, ambitions and wants.
wondering what effect each decision however big or small will have.
planning for then rethinking family trips, the cost, the effort, the drive, the heat, comfort once you get there....
loads of vitamins.
dreading the implementation of diet changes: going gluten free, dairy free, caffeine free, sugar free. one step at a time.
taking everything one step at a time.
learning to say, I can't do anymore today, please take over.
trusting that your request will be heard with love and care and honored too.
learning to love what you've got.
finding joy in the little girl's new found joy in preschool.
forming new dreams - dreams that are easier to realize, more flexible and easier to let go of if need be.
sometimes saying yes to wrestling, even when your tired - because you've got the emotional energy to bring that joy to the little boy.
finally learning to put yourself first and take care of yourself, because you, in whatever form you come to the family are exactly what is needed to make it whole.
joining the gym, deciding to spend some of your precious energy on your poor tired body, finding so much joy in the work of it and feeling so satisfied by the results - finding you can actually rebuild some of that lost muscle!
enjoying life, every little moment and hour that feels normal.
enjoying every smile and laugh and hug and kiss and moment of connection, because in that we are normal.
letting others in, learning to be honest and say what is really alive in you.
in our life, but not the whole, just a piece.

Sunday, May 22, 2011

"The Spoon Theory"

If you love Jim, (and I know you do), watch this:

Jim watched this and cried.  It's true, it's really like this.  He cried because he is ALWAYS borrowing spoons from tomorrows stash.  He is still trying to deny his supply is limited.  Everyday he pushes himself, because he thinks he can, he thinks he should, he thinks others think he can, he thinks others think he should, he feels guilty, he feels embarrassed, he feels helpless and out of control.
I cried because although I "get it" I will never truly know what it feels like and the truth is that it is hard to be the "healthy one" and always make room for what is going on with the "ill one".  Sometimes I am tired or sick or just sick-and-tired.  I feel cheated too.  But still.  I am thankful for these types of reminders.  I am thankful Jim and I can talk and share our thoughts and feelings - though we don't always do it well or with enough care and compassion.  We keep on trying.  I am thankful for him, and all his spoons - and all mine because I know if he lets me I can use my seemingly limitless supply to make up for those he does not have or those he is reserving for later use.
If you see Jim out and about or at a gathering, just know, he is using his spoons just to be there.

Friday, May 13, 2011

Easter, the easy way - just pictures

A bug inspired easter bunny came to visit our house

Maggy bit the bunny's nose right off.
Fletch went right to building.

Add caption
holding onto the money no matter the cost!

just a few eggs

The annual up-a-tree picture!

Monday, April 25, 2011

Simply 10 Good Things

inspired by Soule Mama

the faces she draws after requesting a family drawn by me

when they play together


feeding my kids

when she falls asleep by herself

his smile, his eyes and yes, his beard

his imagination and the delight he gets out of his own creations

family work

this warm and comfy spot

family walks

check this out:

suggested reading

looking for 100 MS blogs
Montel Williams' Climbing Higher
MS and Your Feelings: Handeling The Ups and Downs of Multiple Sclerosis by Allison Shadday
The Multiple Sclerosis Diet Book by Roy L. Swank
Multiple Sclerosis A Self-Help Guide to Its Management by Judy Graham

There will be more as we read more.  I just wanted to share this with you.  You who loves Jim and can learn so much about what his life is like by reading some of the above.  And then by starting a conversation, one where you don't let him get away with, "good, the same, crappy.", one where he really tells you about what is going on with him and you really listen - just listen.