Feeds:
Posts
Comments

Archive for the ‘caregiving’ Category

Thanks to all for the birthday wishes. Michelle had a wonderful birthday. In Michelle style, she always has a smile on her face. She brings us all joy.

 

10827925_10203170427763917_9187852380661067657_o

Michelle’s Birthday 2014 Happy “38”

 

Read Full Post »

Our church in New York is in the process of renovation. Last evening there was a meeting for all who wished to see the latest plans. Everyone was thoughtful of persons in wheelchairs but they expressed their concern by including in the plan a ramp off to the side that would make the altar area accessible. I instead advocated for universal design. Most people did not know what that was. Many people think that if we are making someplace accessible we are inclusive. But accommodating and wholeheartedly welcoming are two different things. There is no reason why persons with disabilities should have a separate access to the altar when one access could be used by all. The goal is not to marginalize certain individuals but to make sure that everyone is included. The following web site has tips on how to make liturgical spaces more inclusive. It’s important that we all think about this.

http://www1.georgetown.edu/centers/liturgy/envisionchurch/architecture/howtos/60891.html

Read Full Post »

“SONG FOR PEOPLE IN WHEELCHAIRS”
Lyrics: Michelle Martone
Music: Pam Carlton & Michelle Martone

When you walk down the street
and you pass me by
I sit here in my wheelchair
and would love it if you just said “Hi!”

Don’t just keep on walking
Don’t just pass me by
Don’t avert your eyes when you see me
I would love it if you just said, “Hi!”

Chorus:
I am so much more than what you may see
There is so much more inside of me:
A sense of humor…Gratitude for life
Could you stop a moment and say, “Hi?”

You may think I’m less of a person
Only because you see I can’t walk
But if you took the time you would see I could talk
Could you stop a moment and say, “Hi?”

(Repeat Chorus)

You may think I’m less of a person
Only because you see I can’t walk
But if you took the time you would see I could talk
Could you stop a moment and say, “Hi?”
Could you stop a moment and say, “Hi?”
Could you stop a moment and say, “Hi?”

Read Full Post »

It’s almost 16 years since Michelle was hit by a car and suffered a traumatic brain injury. Although she has multiple disabilities, she has taught us the true meaning of love. She composed a song, “I am Surrounded by Love.” She is surrounded by love because even on her worst days she teaches us what love is all about. Happy Birthday darling daughter.

Read Full Post »

For those of us who are caregivers, here’s a sign of hope.
http://www.clasp.org/issues/pages?type=work_life_and_job_quality&id=0043&goback=.gmr_1905451.gde_1905451_member_5798054778000924674#!

Read Full Post »

CAREGIVING

August 5, 2013 by Marilyn Martone | Edit

The music from the local fire house’s annual outdoor party blasts from five blocks away. I imagine what it would be like to be there – talking, having a drink, and maybe even dancing. But I’m a caregiver and my daughter’s aide is on vacation this week. Besides I’d probably find it hard to go without my daughter because everyone else seems to have forgotten that she exists and I am her connection to the larger world.

Besides there’s too much to do. My husband is having surgery on his back this week and I need to take him to do his pre-op work on Tuesday and then spend all day Thursday with him at the hospital. I also need to take my daughter into the city on Wednesday to see her neurologist.

In a few hours my two young granddaughters are coming for dinner so my son, who is now raising the children by himself, can have some free time.

My husband also wants to know why I don’t spend more time with him and my friends are telling me that I need to take care of myself.

Just as I’m wondering who I should take care of first, my daughter gets a large gash in her knee as she is transferring into her wheel chair. Blood is gushing out all over. I rush her to the car and as I brace her legs for the transfer my white slacks get covered in blood.

Nine stitches and three hours later I return home. I’ve disappointed my granddaughters, my son, and my husband again. I clean up the blood, turn my daughter over to the evening aide who is not on vacation, listen to the music from the firehouse, and wonder if loving is always so fragmented and at times so lonely.

Posted in brain injury, caregiving, disability | Tagged Brain Injury, caregiving, disability, TBI | Leave a Comment

Read Full Post »

The Mayo Clinic is in the midst of sponsoring a scholarship for their Social Media Conference in October. I am one of the entrants and as far as I can tell the only one representing brain injury. If you would like to see me win please click on the link and vote for me by hitting the like button next to facebook. If you are not on facebook you can also vote by posting a comment. Spread the word on your web sites. Many thanks.
http://network.socialmedia.mayoclinic.org/discussion/marilyn-martone-patientcaregiver-scholarship-2013

Read Full Post »

« Newer Posts - Older Posts »

%d bloggers like this: