Tag - inspiration

1
Life is a Battlefield
2
Don’t judge
3
She’s with me
4
Why It’s Okay for Your Child to Stare at Mine
5
Rose Kennedy quote
6
The Super Bowl of Special Needs Parenting: Thanking Your Child’s Team
7
It Takes a Village (and then some) to Raise a Child with Special and Complex Needs
8
Do the best you can…
9
Campbell in waiting room
10
Is That A Minibar in Your Closet? Taking a Moment for Yourself

Life is a Battlefield

I’ve always been a huge lover of words. Not surprising coming from someone who loves to write, I keep quotes and song lyrics in numerous journals I’ve collected over the years.
Not a day goes by where I don’t read or hear words that strike me as relatable to something going on in my life. Many times I see or hear words at the right time and it will help me see things in a new perspective.
Just the other night, I was feeling down and discouraged. We had a lot going on at home, including Campbell having a few seizures that are typically controlled by medicine.
This may be a surprise to some people who know me because I’ve learned to put on a good face, to smile and say I’m fine when really it’s the furthest thing from the truth.

Read More

“Judging a person does not define who they are.  It defines who you are.”

IMG_0756Campbell enjoying an evening out with the family at a local restaurant.  This picture reminds me of a song by Collin Raye called “She’s With Me. He wrote it for his granddaughter who is in the video and has since passed away from Rett’s Syndrome.  He captures many feelings that loved ones of children with special and complex needs share. Click here to listen to the song on YouTube. 

Why It’s Okay for Your Child to Stare at Mine

IMG_2155

“Stop staring! It’s rude,” the embarrassed mom loudly whispers to her daughter before she drags her away from us. My daughter Campbell, who is in a wheelchair, is fortunately looking elsewhere at the time.
I just stand and watch the situation unfold and observe the child as she looks at her mom with a guilty face and then mutters, “I’m sorry” before turning back once more to look at us.
Don’t be sorry,” I silently think to myself, “it’s okay to look. Once you get to know her, she’s not so different from you.”
Read More

It has been said, ‘time heals all wounds.’  I do not agree.  The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone.”    – Rose Kennedy

The Super Bowl of Special Needs Parenting: Thanking Your Child’s Team

IMG_1730

Campbell at a fundraiser for Visually Impaired Preschool Services (VIPS) with former professional football player (New England Patriots) and Super Bowl champion, Marty Moore and his wife, Wendy 
The other day, I wrote a post about how it takes a village to raise a child. That village becomes your support system that we often refer as Campbell’s “team.”
Whether it’s her medical team or school team, we all work together to ensure she receives the care that she needs.
When Campbell turned ten a few weeks ago, I decided to throw a big birthday celebration to mark this milestone. I wanted to celebrate her decade of awesomeness but also invite and thank all of the people who had been involved in our lives over the past ten years.

Read More

It Takes a Village (and then some) to Raise a Child with Special and Complex Needs

IMG_1845

Campbell enjoying a puppet show by a youth group during the building of a handicap ramp for our home by Red House Baptist Church
There’s an African proverb you may have heard, “it takes a village to raise a child.” Hillary Clinton wrote a book in the late 90s using that concept and in recent years, Pope Francis had Italian school children chanting the mantra.
I’m sure most of you can probably agree this is true with any child. Parents with children who have special needs live this reality daily and may even add to the list of villagers.
It takes a village, several specialists, therapists, maybe the next village over and having the National Guard on standby isn’t a bad idea to be honest.

Read More

“Do the best you can until you know better.  Then when you know better, do better.”

~Maya Angelou

 

Campbell in chair

Campbell in the waiting room at Cincinnati Children’s Hospital decked out in her University of Kentucky blue and white.  With custom UK AFOs (Ankle Foot Orthosis) of course!

Is That A Minibar in Your Closet? Taking a Moment for Yourself

IMG_0915

I’ll admit that there are some days; all I can do is step into the closet, close the door and cry.
Granted, I don’t get to stay in there too long but it is a nice escape.
Here’s an example of an instance when I’ve used this coping method.
I’ve been on hold with the insurance company for 38 minutes and got cut off only to call back and be put on eternal hold again.
Next, I was repositioning Campbell in the bed and her feeding tube got caught and was pulled out. I calmly gathered everything to quickly put it back in because those darn g-tube sites close up quickly.

Read More