Archive - 2016

1
Where Have We Been??
2
Siblings
3
Facts About Epilepsy
4
More Than You (Or I) Ever Wanted to Know About Genetics
5
Be Kind
6
Happy St. Patrick’s Day
7
Songs of Love
8
Life is a Battlefield
9
Don’t judge
10
Spread the Word to End the Word

Where Have We Been??

My mom asked me the other day, “Are you still doing your blog.”
I paused because I wasn’t sure how to answer. I haven’t posted here in months, even though I have updated the blog social media accounts sporadically. If you don’t already follow those, you can find us on Facebook and Instagram.

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Siblings of people with special needs see the world through the eyes of someone who knows unconditional love and believe in endless possibilities.

~Chasing the Cleavers

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Just a few weeks ago, we celebrated Purple Day to raise awareness for epilepsy. Campbell has two types of seizures: partial seizures and primary generalized seizures.  She has also gone into status epilepticus which is a life-threatening seizure.  Earlier this week, she experienced a seizure that lasted over 30 minutes which is considered status epilepticus. Fortunately, she pulled out of it and only required a brief stay in the ER but arrived in an ambulance. She loves to make a grand entrance. I thought I’d take some time to share some interesting facts about epilepsy.
  • 65 million people have epilepsy in the world
  • 3 million of those live in the United States
  • 1 in 26 people in the US will develop epilepsy
  • 150,000 new cases of epilepsy just in the US each year
  • ONE-THIRD of people live with uncontrollable seizures (meaning no medicine or other treatments work)
  • 6 out of 10 people have no known cause for their seizures
To learn more about epilepsy, visit www.epilepsy.com.  They have wonderful resources and information for both individuals with epilepsy, parents and families.

More Than You (Or I) Ever Wanted to Know About Genetics

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The last few weeks have been filled with several doctor appointments for Campbell and I’ll admit my brain is on information overload.
One of those appointments was to the geneticist that involved over two hours of updating her medical information along with listening to her doctor explain the newest advances in the fascinating but complex world of genetics.
I’ll be honest, I’ve had trouble with trying to explain everything to family, friends and her therapists, much less writing this blog post without confusing everyone and ultimately myself. Sometimes the more you rehash something, the more questions you have.

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“Be kind, for everyone you meet is fighting a battle you know nothing about.”

 

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Happy St. Patrick’s Day from our family to yours!  This has always been one of our favorite holidays because of my grandfather.  He was proud of his Irish heritage and loved celebrating the day which rubbed off on us. March is also Cerebral Palsy Awareness Month where everyone is encouraged to wear green.  To learn more, click here.                                             

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Songs of Love is a nonprofit organization dedicated to providing personalized uplifting songs, free of charge, for children and teens currently facing tough medical, physical or emotional challenges. This is Campbell with her personalized song that she has enjoyed over the years. Visit their website at www.songsoflove.org to find out how you can get your child a personalized song or donate to an awesome charity.

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.