Saturday, June 11, 2011

Roller Coasters

I grew up only about a half hour away from several theme parks (Disneyland, Knott's Berry Farm, etc.) and remember as a young girl feeling the anticipation and adrenaline rush as I would stand in line for a roller coaster.   There is something about the smell of churros and funnel cakes, sounds of distant screams, and atmosphere of excitement that makes me giddy inside.  In fact, if you asked me when I was a young woman what some of the qualities I'd look for in a future mate, you'd better believe that a "love of roller coasters" would have to be on the list.  I always knew that I wanted to have an even number of kids so that everyone would have a buddy to sit by on a roller coaster.  Strange, I know. 

People who know Jeff and I really well know of our absolute obsession with roller coaster's.  There is not a roller coaster out there that we wouldn't love to try.  While living in PA, we spent 2 summer's taking many trips to Six Flags Great Adventure both as a couple and as a family.  I recall dragging several of my friends on rides with me despite their kicking and screaming with hesitation.  I couldn't be happier when I started to see the same love of roller coaster's start to grow in my oldest son, Ethan.  In fact, last summer at 6 years of age, he rode this:

So, why all this talk about roller coaster's?  Honestly, they've been on my mind a lot lately.  I've had many conversations over the last 3 weeks about our recent news regarding Chase's heart condition.  Many people have expressed how grateful I must feel that I found out about his heart before it was too late.  It's all true.  I am so grateful.  It would have been the most devastating thing to find out something was wrong without even having an opportunity to intervene.

What I couldn't figure out was...why am I still so sad?  He's still here with me.  I get to hold him, kiss him, play with  him.  What is my deal?  While talking to one of my best friends, she said something to me that made so much sense.  It helped me pin down why I was feeling so sad even though Chase is still here..and doing well.  

I'm not mourning the loss of Chase.  I'm mourning the loss of the life I thought we'd have.

Chase will never be able to ride a roller coaster.  Because of his heart condition, he will never be able to be an active little boy.  He will never be able to play basketball, soccer, football.  I know, I know.....there's always golf, music, art, etc.  While that's all true, it still sucks.  All of the things that I love to do involve being very active.  I've always dreamed of water ski trips, snow skiing vacations, hiking, swimming.  How do you tell a boy that he can't be involved in things that they innately want so badly to be a part of?  In the not too distant future, Chase will probably ask, "Mom, can I play on a soccer team like Ethan?"  How is explaining to a little boy that they can't play sports part of living a "normal" life?  It's going to break my heart watching him sit on the sidelines as he watches is 3 older siblings fulfill some of their dreams.

Please know that I realize that sports aren't for everyone.  It's hard for me to imagine that because sports was my life growing up.  I realize that my dreams aren't my kids dreams.  I have never been that parent that expects my kids to do what "I" hope for them to do.  The irony in all of this for me is that of all 4 of my kids, I can already tell that Chase has the least amount of fear.  He watches his older siblings ride their bikes, swim, run...and I can barely contain him in my arms.  He's not walking yet but I can tell he just wants to take off.  He has no idea yet that he will only know a life with medications and limitations...not sports.

I have no doubt that Chase will rise above.  In fact, he may not even care about sports.  There really is so much more that life has to offer.  I am selfishly putting words to the sadness I feel in my heart for Chase.  I just want him to be happy.  I don't want him to ever have to be held back from anything he desires in life.

Today, I just feel like complaining.  The day to day things have become so much harder.  Watching Chase sleep and not wanting to leave his side to even take a shower, having to explain his condition when he looks perfectly healthy, endless doctors appointments, waking him up in the middle of the night to give him his medicine, the constant worry that I'll not hear my alarm and miss a dose, visits to the ER every time he even gets a cold, wondering about the future and if there will even be one, spontaneous bouts of tears.  It's just all so overwhelming.  

This is where the roller coaster comes into play...again.  MY EMOTIONS.   They are all over the chart.  One day, all I feel is gratitude.  In fact, most days...all I feel is gratitude.  I am willing to give up or sacrifice anything for my kids.  If I never get on another roller coaster ride again in my life so that I can be there for be it.  Doesn't mean that it's still not hard.  I am trying to learn to walk forward with faith and with a grateful heart, always and in all things.  I know without a doubt that my Heavenly Father has a plan for my family.. that it is His plan.  Not mine.  His plan will always be better than my own.  Every single time. 

I am grateful...but I am also mourning.  I'll get over myself tomorrow.  I just wanted to vent.  Thank for being patient with me.

I can do hard things...  (after I hug my kiddos and go take a much needed nap!)

Tuesday, June 7, 2011

More good news

We spent about 5 hours at CHOP yesterday for a much anticipated appointment in the cardiology dept.  It was time for Ethan, Hayley and Brooklyn to be screened for HCM.  Each of them had EKG's and Echocardiogram's.  They were all troopers. 

The good news?  They were all free from far.  The cardiologist explained that until we know where Chase's condition came from, they are not completely out of the woods yet.  They could be carrier's of the gene or protein that causes HCM but it has not presented yet.  We won't know the answers for a while.  Chase has an appointment with a genetic counselor next week.  We'll see if we can get any more answers then.

For now, I am elated to know that they (or I) don't have it. 

Another bullet dodged..

Thursday, June 2, 2011


When Jeff and I were on our way home from the hospital with Chase, we were discussing our new found perspective.  Somehow, the world looked different all around us and all we could talk about was our kids..and how blessed we've been.   Because we really didn't (and still don't) know how long Chase will be with us, we decided that we could no longer put off getting a family picture.  So, I picked up the phone, and called my friend Melia. No only is she one of my best friends, but she is an AMAZING photographer.  I have always been one of her biggest fans.  I told her about Chase and asked if she'd be willing to do a photo shoot with our family.  She showed up at our house the following day.   Such a great friend.

During the photo shoot, Chase was super grumpy.  He was still adjusting to his medication.  That didn't stop Melia.  She captured the only 5 smiles he eeked out during the hour long session. 

Less than a week later, she showed up on our doorstep with this amazing video.  Thank you so much, Melia.  It is something I will treasure always!

p.s.  If you've been thinking that it's time to get family pictures and just haven't got around to it, JUST SCHEDULE IT!  You'll be so glad you did.  If you're in the Philadelphia area, I HIGHLY recommend Melia.  Her website is..

Here's the link to the video of our photo session: