Skip to main content

Blogging for One Year


It was one year ago today that I started this journey into blogging. I really had no expectations about where this would lead. I didn't know much about it. I know a bit more - there's loads of talented bloggers sharing information, making connections and opening up a new forum for parents with special needs children to share their experiences.

Unexpectedly, I have gained more from this experience than I have given:

1.  I am on a roller coaster - Our experience seems more intense, faster paced and definitely mind blowing at times. The posts help me see what our lives actually look like. Finding out about seizures one day, hearing about huge progress in speech or occupation therapy the next can be exhausting. The posts are a reminder that I am on a roller coaster ride of emotions and that it is okay to slow down or even get off the ride for a little while.

2. I feel supported - The connections made through the internet are amazing. To know there are other families facing similar issues and surviving makes me stronger. Their is a certain kinship developed by reading others' blogs and commenting on their posts. 5 Minutes for Special Needs is a wonderful site supporting people like me. For some unknown reason, I have readers in Israel - that amazes and delights me.

3. I am reaching out to strangers - When I am out and about with or without Ben, I come in contact with  people in the same situation as us. I give them a card (yes, I had cards made on Vista) so they may contact me or at least use the resources I have listed on this site. Having the site has given me a new confidence.

One woman I met this summer is a parent to a 31 year old son with Spina Bifida. She proudly explained to me that she fought 25 years ago for rights for her son in the schools and made it easy for parents like me. I have her card and will use it - she has so much knowledge, experience and perspective. I can learn from her.

4. I am healing - Ben's behavior therapist recently finished her dissertation on how parents cope and process having a child with special needs. Through her focus groups and research, she determined that there was one factor that separated parents who could cope with having a child with special needs and those who had a harder time. It was the ability to contribute to the greater cause and see the big picture. I hope that I am on that course with my volunteering and writing.

5. I am having fun - There are times I feel the pressure to write a post to keep up with my goal of four per week, but it is a good stress. I look forward to writing, brainstorming topics and planning my posts. It is something that is completely mine, and I get energized by the entire process from beginning to end.

6. I have extended my family
- I live many hours from my family. I talk with my parents and siblings regularly, but I do not have a lot of communication with extended family. This has been a great way to stay in touch with them, letting them know about what we face each day of our lives. My husband's family members - distant cousins whom we see at weddings, funerals and reunions - have been loyal followers from the beginning. I feel love, caring and understanding from the family members who keep up with my posts.

My posts have shown family members a side of me that they did not expect. This is a chance for me to share with others what it feels like to be Ben's mom.

7. I get to do what I like - Not only do I get to write, I get to design and create. And it's a reason to stay up late, because I love when I am alone, it's quiet and no one is tugging at my sleeves, pulling my hair or biting my feet - and that's just what Ryan does to get my attention.

Thanks for the year. I will try to press on.

Comments

  1. Vanessa, I always look forward to your posts-- it's been a way to keep up with you guys, but it's also been a valuable learning experience for me. I have so much respect for what you and Ryan have learned, have accomplished, have fought for. Thank you for all you put into this!

    ReplyDelete

Post a Comment

Thank you for reading my post. I appreciate you taking the time to comment. If you wish to contact me directly, please let me know and I will email you.

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