Wednesday, August 20, 2014

A trend that's actually making a huge impact, and you're annoyed.

The ice bucket challenge.  How many of us are so aware of this?  I'm sure somewhere in your conversation today, you will speak or hear about a bucket o ice!  Have you been challenged?  Taken the challenge?  Have no idea what I'm talking about?  Ask any random person to show your their Facebook, IG, Twitter, or even Google Nightly News, ice bucket challenge.  You will see video after video after video of people pouring ice water on their heads.

Jake, Finley, and I have even done it!

I will admit, I'm a regular on social media.  I have a love hate relationship with it, but none the less, I'm more addicted than I'd like to admit.  We all see things posted, tweeted, or pictures that we don't agree with.  We have that right to disagree or not "like" something.  We are all entitled to our opinions.  I'm not one to usually speak up about something I disagree with, unless it really hits me hard.  I don't like to stir the pot, per say, and avoid confrontation at all costs.  I like to keep the peace.

Last night was a different story.  I was scrolling through my Facebook news feed and saw a post from a so called "friend."  I can't give you every word they said because today this person's Facebook has been deleted OR I've been blocked.  So, the post went something like this.  I'm so tired of seeing all these ice bucket challenges.  I think it's just so stupid that people are doing this.  I'm so ready for this to be over so that my news feed isn't clogged with all these stupid videos.  Maybe I'm just a jerk, or maybe I'm just done with Facebook.

Along with all the videos circulating out there are articles people have written for and against the ice bucket challenge.  I've read both sides.  I've learned a lot about ALS and also learned that this challenge has raised millions for this devastating disease.  As far as the articles written against this challenge, the only thing that I can find in these articles that I agree with is that if you are dumping ice on your head on not making some sort of donation, your kind of missing the point.

So, my response to this person's post was this.  "I happen to think the ice bucket challenge is a great thing.  It's bringing awareness and funds to this life changing, terminal, no cure, devastating disorder.  But, hey, maybe I'm partial because my daughter has a terminal, no cure disorder and this ice bucket challenge has brought awareness and funds to our foundation that supports medical research.  I wish more people would stand up for these horrible disorders."  Or something along those lines.

Annoyed with your facebook feed being clogged with these videos?  I'm not sorry for it.  These rare diseases need a voice, and admit it, these videos of people dumping water on their heads made you smile or laugh.  It's trending now, so don't worry, a few weeks from now you'll probably see only a few videos a day. 
 My typical facebook feed reads a little like this:
  • Please pray for my daughter, she had a horrible seizure last night and we had to rush her to the ER.
  • My son actually smiled today.  I haven't seen that beautiful smile in months.
  • What medication are you using for your child's movement disorder?
  • I fear my son is losing the ability to walk.  What brand of wheel chair are you using?
  • Today my worst nightmare is happening.  We have to say good bye to our 12 year old daughter.

So, you'll have to forgive me for being a little sarcastic and opinionated in this blog.  However, I will never apologize for being a voice for my daughter, her friends with MPS, or any other rare disease that needs to be heard about, funded, and for people to just gain compassion.

Not sure about ALS or what it's about?  I found this article to being extremely good.

And just as a side note, I'd dump whatever it took over my head to cure my daughter!

Saturday, August 9, 2014


Embracing change creates somewhat of a freedom.  It does not, however, make the inevitable tolerable or less sad.  It does not make the gut wrenching idea of losing my daughter any easier, but, it does help in transitions and decisions.

Change is freeing if you are open and willing.

Change can bring about situations that are better than you could have imagined.

Change is a big part of my life.

Change is scary.

Change is inevitable in anyone's life.

Do you remember that feeling you got as a child, waking up Christmas morning when the house is so quiet you think you may still hear Rudolph?  The idea of what could be waiting for you under the Christmas tree.  Part of my excitement was waking my sister and parents up to share in that first glimpse of "the goods."  I can still feel that anticipation and excitement.  Unfortunately, I don't  have this anticipation feeling anymore.  I don't let myself get anxious or excited about much.  I do look forward to things, and appreciate vacations, parties, gifts, etc.  It's just I don't let myself get worked up in anticipation.  It may be a defense mechanism that unbeknownst to me, happened after Livia was diagnosed.  I mean, it makes sense.  Haven't we experienced the ultimate let down?

This thought is sad.  You may be thinking, I feel bad for her, not to get excited about things.  Please don't.  It's been freeing.  In the past I would dwell over things like preparing for a dinner party.  I'd let myself think about everything that needed to be done to make the event absolutely perfect.  It would take days of thought even if it were just a few people coming over.  It consumed me.  I don't have that anymore.  If I know something is coming up, like a trip, or an event, I prepare accordingly and do what needs to be done, but it doesn't consume me like it once did in the past.  I don't anticipate "this or that" happening, because if plans get changed or something comes up, what good does it do for me to fret about the "what if's."  This is freeing.

The ultimate change occurred on 7/8/09, when we got the horrendous news about Livia.  Think about that Christmas morning feeling, waking to no presents under the tree, and then multiplying it by infinity.  Then having that sick feeling creep up inside of you at least once a day, being reminded that tomorrow could bring a huge change that will change her life forever.  Will she even be here tomorrow?  Thankfully, I don't even anticipate tomorrow, anymore.  This is freeing.

Livia recently got a gtube.  It was a decision that Jake and I had to make due to the recommendation from  Livia's doctor, whom we trust very much.  This was a big change about to happen.  Were we making the right decision for her?  How could it possibly be time for her to need this?  Selfishly, I didn't want a tube hanging out of her belly because I loved her perfect tummy.  We decided to move forward with the procedure to proactively place the tube for her benefit.  She also had an umbilical hernia repaired.

I'm happy to report that this change has been great.  Livia has recovered beautifully, and you wouldn't even know she had the tube placed.  I believe that her hernia may have been causing her some pain because after we got home from the hospital, she's been so happy and engaged.  Her mood has validated that we made the right decision, and this change, has become part of our "normal."

Change will continue to be a part of all our lives.  It will impact us when we least expect it or even want it.  However, even when change seems impossible or scary, the ability to embrace it, work with it, be open to it may really surprise you.  Never, in a million years, would I think my life would be what it is today.  It's taken awhile to adjust to diminished dreams, but the new dreams and opportunities that we have been given have enriched our lives more than I think those original dreams would have provided.

Change can be freeing.