Skip to main content

Better Late than Never

One of my very best friends from a long time ago called me last week to talk about her baby who is undergoing testing for medical and developmental issues. Understandably, she is upset, sad, tired, discouraged…all the normal feelings you have when you find out your child has special needs.

In the middle of her sharing about her difficult time, she apologized for not being there for me when I was going through the same thing several years ago. She told me she never understood what I was going through until now. She wished she had been a better friend to me back then.

I was dumbstruck when she said it. I kind of blew it off and told her not to even give it a second thought.

And I meant for her to not give it a second thought. I, on the other hand, have given it many thoughts. I even cried when we got off the phone (and remember I am not a crier.) For someone to say what she said to me meant a lot. I have no anger or bad feelings to anyone who does not understand what we went through in the beginning and what we go through every day. The acknowledgement from my friend helps to validate my experience, my feelings and situation. It helps me feel normal.

There are times when I have hurt thinking about things I never dreamed of when it came to Ben, and I have felt alone, misunderstood and psychotic. The feelings can be deep. And it seems like no one could possibly understand. On the other hand, it is frustrating and confusing when they do not understand.

For someone to truly understand what another person is going through, they have to be willing to feel those painful emotions. And who really wants to go there if they don’t have to.

So I say to my friend, thank you for sharing your feelings with me. It has made me feel stronger, more loved and better understood. Your honesty is the best support you could have given me.

Comments

Popular posts from this blog

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