Everyone for Ethan

This is from one of my dearest and oldest friends, Michele. She and I went to high school together many moons ago. We have managed to stay in touch over the years seeing each other when we can. Her son, Ethan, is a beautiful little boy with a very rare disease - only 100 people have it in the world. She and her family have had a lot to go through over the past few years.

Recently, her friends got together to plan a fundraiser to help with some of the financial burden. She recently sent me these words and they affected me so much that I asked if I could reprint them and promote the fundraiser:

Actually, we really have nothing to do with the fundraiser...I really have been very private about it but my friend from the gym is a bigwig at a bank so I went to him for advice about our mortgage...We haven't been able to pay it in a year! My friends from the gym all got together and came to me to tell me they were having it for us!! There has been so many kind and generous people in the community from family, friends, coworkers, acquaintances and even strangers!! It really has restored my faith in people and gives me a new found hope in our situation!!

Check out the site on Facebook:

Everyone for Ethan

Comments

Parenting an Adult Child with Disabilities

"Parenting an Adult Child with Disabilities" is a series on eSpeciallyBen. As Ben approached 18, it was clear our role changed as parents. We needed to help Ben transition into adulthood. These stories are meant to assist other families who face, or will face, some of the same challenges. Talking About the Future Guest Post - Matt Wilson Legal Guardianship, Medicaid and SSI Researching Group Homes Questions to Ask at a Group Home Visit Referral Packet for Group Homes Getting Assistance from a Care Manager From Group Home Placement to Discharge Reaching for Independence

He Ain't Heavy, He's My Brother

After my post, Brotherly Love , I received an email from a reader who reminded me of this song. I knew the song, but had never really thought about the words and the meaning behind them. I looked it up and thought others might see the lyrics in a new light. He Ain't Heavy, He's My Brother The road is long With many a winding turn That leads us to who knows where Who knows when But I'm strong Strong enough to carry him He ain't heavy, he's my brother. So on we go His welfare is of my concern No burden is he to bear We'll get there For I know He would not encumber me If I'm laden at all I'm laden with sadness That everyone's heart Isn't filled with the gladness Of love for one another. It's a long, long road From which there is no return While we're on the way to there Why not share And the load Doesn't weigh me down at all He ain't heavy, he's my brother. He's my brother He ain't h

Kids Who Volunteer

On Saturday, Kidz That Care , a nonprofit organization in Charlotte, visited Ben's Easterseals UCP group home to "Pack the Pantry" with groceries and beautify the front porch with flowers. Ben joined the group outside and watched them plant poinsettias, sweep leaves and wipe down tables. I wasn't sure how engaged Ben was in the activity but when I tried to take him for a walk, he made it clear he wanted to stay and observe. He hugged the one adult with the group (not the photo above). When the group was leaving, Kidz That Care asked to take a photo with Ben. I noticed how Liam, one of the teen volunteers, kneeled next to Ben rather than stand behind him. Usually people not comfortable around Ben are hesitant to get close. I was impressed with Liam's willingness to bend down and be at his level. Then Ben leaned in for a hug and held on to Liam for several minutes. Ben's hands were tight around Liam's neck and he kept his head on Liam's shoulder. It w

eSpecially Ben

Search This Blog