Skip to main content

eSpecially Parents: Donna's Story

Hello everyone.  I'm new at this blogging thing so bare with me. My name is Donna and my son's name is Ben.  I met Vanessa and her sweet Momma when our Ben's were classmates years ago.  Vanessa was the only parent (other than me) who would stay in the classroom to check things out. I would try to just drop him off and leave, but ended up going back inside.  Maybe it was because Ben stayed sooo sick and I worried about him catching something else.

Ben is an only child and was born with Tetralogy of Fallot (a defective heart).  He had 3 chambers instead of 4. I found out about his heart at 4 months pregnant.  During my last doctor's  visit, something went terribly wrong and I had an emergency c-section that night.  Ben was born with underdeveloped lungs and had to stay in the NICU for 2 months.  (Somewhere along 7 months I lost fluid and it went undetected).

At 3 months old I took him back to the hospital for his heart surgery.  It was a success, but while in the recovery room on the second night, the nurse turned him over and his ventilator came out.  I came home with a different child.  You might say how could I tell at 3 months?  Oh, I could tell immediately.  Moms, you know when your baby isn't breathing, eating, or sleeping the same.

So what did I do after giving myself permission to loose my mind for "one minute"?  I looked at Ben and said "okay, here we go baby", and I became the mother who made sure everyone who came in contact with Ben was on the same page.

Ben had a lot going on.  My motto was "prevention mode" because once he became sick I was the one taking care of him for at least 2 weeks.  I told everyone involved with him that they needed to learn how to stay in prevention mode with my little man.

Moving forward, Ben is now 7, immobile, cognitively delayed, and has a g-tube. I'm happily divorced after 3 years of marriage.  I divorced almost a year after Ben was born.  Surprise, surprise.  My occupation is Benjamin 24/7.

Life has been pretty difficult for me but I just make sure that I keep living.  I love to play and laugh a lot even when it's not funny.  I set weekly goals for myself to make sure I keep this thing called life fun for me.  At 42 years old I decided to get a tattoo.  What the.....?  Ooouch!  I'm such a punk, I didn't let the guy finish it.  Now I'm ready to get it finished.  Not by him, though.  I want a motorcycle.  We'll see. Kayaking is my next venture along with white water rafting.  My intention was to go skydiving before having a baby, but that didn't happen, so I've scratched that off my list.

My mom and dad are my lifeline.  Without them I couldn't do this without losing my mind.  My mom has a magnet on her refrigerator that says "Dance like nobody is watching" and that's exactly what I do in my kitchen.  Ben sees me though.  He smiles his great big smile, reaches his arms out, and we dance to whatever is on the radio or TV, be it rock, gospel, soul, or nursery rhyme.

Love life y'all!


Comments

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

Make this Race Amazing

Mecklenburg County's Therapeutic Recreation's Amazing Race is Saturday, March 24, 2012. All funds raised go directly to the scholarship fund for summer camp. Summer Camp is 8 weeks long with over 150 children with special needs participating. Last year, over $6,500 was given away in scholarships. In times of budget cuts and loss of resources, Amazing Race is a creative way for the staff to raise money for the children who may need financial assistance attending camp. I will be posting photos from 2011 camp. I am only posting photos that do not show faces of the children, but you will get the idea about how much they enjoy the activities. You don't have to see their smiles, you just have to feel them. The staff have sent me their thoughts on how they feel about camp and I will be posting those as well. Most are trained as recreational therapists and have devoted their life's work to helping children and adults with special needs learn skills, make friends, de