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November 9, 2011

An Epiphany

Quick update, we're in our new house!  Hooray!!  We're mostly unpacked, so I am anxious to learn what our new "normal" will be.  This is such a huge relief! 

As for my post, let me give you some background information in the hopes that the rest of the post will make sense...

As a heart mom, I am fortunate to "meet" other heart moms and dads through blogs, Facebook, and sites like CaringBridge.  We connect and support each other in these online communities.  It is an invaluable way to connect with other people in similar situations.

One of these moms is Beverley Bouchard.  She is the mother of Leyda, a sweet girl born with Hypoplastic Left Heart Syndrome and a hypoplastic (or underdeveloped) right lung.  Beverley first reached out to me on David's CaringBridge site in our guest book.  While I value every comment left in our guest book, I especially love reading the comments left from other heart parents.  I started following Leyda's blog about a year and a half ago, not long after Leyda suffered her second stroke.  Beverley and her husband Jim were later informed that Leyda's heart was failing and due to other complications, she was not a candidate for a heart transplant.  She was given a short time to live.  After far surpassing the doctor's timeline, sweet Leyda was made whole on October 22, 2011. 

I can't overestimate the impact that Beverley's example had on me.  She shepherded Leyda through her life.  She knew when she brought Leyda into her home as a foster child and later when she adopted her that Leyda's health was poor.  She lovingly embraced her as her daughter, and helped Leyda experience life.  Her blog updates frequently included information about trips to the zoo, amusement parks, etc, etc.  They didn't let Leyda's condition and prognosis keep them from building memories, getting Leyda all the help possible, and simply living life.  When I feel defeated or depressed about our situation, I think of Beverley and the example she set.  She did it right...  I feel like my explanation is extremely deficient in expressing how inspiring this woman is to me.  If you want to read more about sweet Leyda and her amazing mom, click here.

Now for my epiphany...

Our heart support group, Amazing Little Hearts, has a Halloween party each year.  It's a lot of fun seeing all the cutie pies dressed up and getting to catch up in person with many of the parents I talk to online.  One of those friends is Megan.  Her little girl also has a complex medical condition involving more than just her heart.  Often times you hear heart families say, "Except for the scar on their chest you'd never know anything was wrong."  Well, when your child is in a wheelchair or a special walker the whole you'd-never-know-anything-was-wrong thing goes out the window.  Megan's daughter is in a wheelchair, so she and David have something uniquely in common when it comes to the rest of the heart kiddos.  As a result, Megan and I have something uniquely in common.  In our brief conversation we talked about the ways our children have improved over the past year.  David's signing a little more, Eavan is adjusting well to her wheelchair, etc, etc.  I said to Megan, "His progress is very, very slow but he's going in the right direction."  She replied, "And that's what's important." 

Bam!!

In that moment, it hit me.  Yes, progress is to be celebrated, but at the end of the day whether or not progress is made is not what is truly important.  More important than David's progress is how I shepherd David through his life. 

Beverley knew for quite some time that Leyda was not improving.  She was dying.  Yet, the way she lead Leyda each day was so much more important than the fact that Leyda was not improving.  She LOVED her.  She cherished the moments with her.  She let Leyda experience life, not for the sake of the experience itself, but because doing anything less would have cheated Leyda of the life she was given.  In turn, Beverley and Jim experienced the gift of Leyda more fully than if they retreated to their home until Leyda passed.

How has this revelation impacted me? 

I have peace in new ways.  I am more confident in our situation.  I still work hard for David, ensuring he gets the therapy he needs and his daily medicine, but I see him differently now.  Instead of looking at him wondering what his life will be like (i.e. will he walk, talk, how intellectually impaired is he, etc), I now focus on him, in the moment.  Rather than being sad about what happened, I see more clearly that God has a purpose in David's life, and it's safe to embrace that purpose.  I don't know what the future will hold for David, but he's here now.  That alone is something to celebrate even if he never walks, talks, or develops intellectually.  David's progress is irrelevant.  How I love David is relevant. 

****Disclaimer****
In no way do I think that I was smart enough to have this epiphany on my own.  I know fully that God whispered in my ear in that moment to reveal this to me.  A whirlwind of seemingly unrelated events all came together to make perfect sense.  I am grateful that God continues to carry us through our life.  In His Grace alone, I have peace