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Life is a Battlefield
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Don’t judge
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Spread the Word to End the Word
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To The Mom Whose Child is Undiagnosed
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She’s with me
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Why It’s Okay for Your Child to Stare at Mine
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Rose Kennedy quote
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Happy Valentine’s Day
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The Super Bowl of Special Needs Parenting: Thanking Your Child’s Team
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Campbell getting a bone density treatment

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.

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

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Today is Spread the Word to End the Word which is an effort to raise consciousness about the hurtful effects of using the word retard(ed). To learn more about the movement visit www.r-word.org where you can take the pledge to help build communities of inclusion and acceptance for all people.  Our family has participated in this movement since it’s inception in 2009.  While some critics of the campaign argue that it promotes censorship, the campaign’s main purpose is to raise awareness that the word retard(ed) is offensive so that people will think before they speak.  Words have power as shown in this video (this has strong language that may not be suitable around children but needs to be heard by adults).  It’s not censorship, it’s civility.

To The Mom Whose Child is Undiagnosed

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I noticed you right away as I walked into the waiting room at the geneticist office. You were the mom with the binder stuffed full of medical information pulled from the Internet, just like I was ten years ago.
I could hear you talking excitedly to your husband who was holding your son in his arms. You were optimistic that you’d finally discovered some information that might lead to an answer to your son’s problems.
I listened as you used language that would make a bystander think you had a medical degree, but I knew the truth. You were self-taught by the indomitable will and determination of a mom searching for answers.
I watched as you gathered your belongings when the nurse called your son’s name and we made eye contact briefly. We smiled at one another but I caught the questioning look in your eye. I knew you wanted to ask about our story.

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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

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“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.”
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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

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Campbell and Matthew on Valentine’s Day 2009

“Sometimes being a brother is even better than being a superhero!” Marc Brown (author of the children’s series, Arthur)`

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

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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.

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Campbell getting her first bone density treatment at Cincinnati Children’s Hospital Medical Center