L is for...

Ten years ago, I thought I knew what love was. I loved my amazing husband ( still do, even though he shot a marshmallow in my eye earlier today and I thought I'd need to wear a patch for the next week...arrgh) I loved my family and loved my friends. Really, I loved my life. I had a great house, a job I loved and time to nap whenever I pleased. I was two months pregnant  and fantastically excited...when I was not vomitting( that went on for over twenty weeks). Had you interviewed me regarding love, I'd have told you I knew it well.
Truth is, I did not. You likely think that I am going to tell you that motherhood changed it all for me. That there is no love like that of a parent for a child and all that stuff. Nope.  While becoming a mother is the cornerstone of my understanding love, it is a means to an end. I came to understand love when I gave birth to a child with Hypoplastic Left Heart Syndrome. Not because he is special and amazing ( which he SO is), but because of the way others showed me love, or in some cases, did not. You see it is awkward to have a friend or relative with a child that isn't " normal". It is challenging  to find a voice to say something positive and even more challenging to to maintain a normal relationship; the kind  with laughter and sarcasm. I found that some people I "loved" just disappeared. They were ill at ease with MY situation.They asked, " do you HAVE to do that here?" when I gave Hayden medications he needed or " Willl you try, again, to have a normal baby ?" ( even though I am unable to have more children) But, they didn't teach me what love was.
Those who taught me about love, stayed by my side when I hadn't showered in days and needed my hair braided, took my middle of the night calls, held me when I cried, fed me and spent time with me and my child who was " different". More importantly, those who taught me about love, still laughed with me, at me and at others with me. They asked how I was, but  then moved on to normal topics of coversation, like shoes, pop culture, politics and, yes, gossip. They still treated me like me. Over the years, these same people came to support me when our family started Hayden's Heart Heroes. They continued to show me what love was by mowing my lawn, grading my essays, moving my furniture, feeding me and visiting me when Hayden was hospitalized for months on end( and pretending to ignore his wide open chest or the ventilator).  They called , texted or emailed just so I'd know they were with me.  They loved me.
I, in turn,  learned how to love back. Don't get me wrong, I loved people before this, but not the way I do today. I love deeply and freely( My boys get tired of my " I love you's"). I have no trouble telling the people that matter the most to me that they, well, matter the most. You see, these amazing " lovers" have taught me that love isn't reserved for a birthday or a card. It is every day stuff.  And everyday stuff isn't alway pretty, sweet or tied in a bow. It is sometimes ugly, smelly and awful( like feet...I hate feet). But, it is real. 
As I look back at my thirty year old, pregnant self, I see a woman who carried less of a burden and had more free time. But, I also see someone who didn't realize the deepest love was yet to come.

( As a side note, I have to give the biggest, loveyest, shout out to my Bertie.  For over twenty-one years, we have navigatived this nonsense together. Ten years ago I thought I loved you.  Hummphhh, compared to today, I did not. Aside from shooting me in the eye and making fun of me in a voice that sounds like a crochety old drunk, you, above anyone else, have shown me what it means to love. More than the moon, the stars...and the light?)

If My Golfish Could Talk, He Would Say...

First, I must give credit where credit is due. This topic spawned from a breakfast conversation between Hayden and I and, most importantly, he is co-authoring this entry ( mamma writer so happy!)
We have had our fish, Lucky Ball, for almost four years . He is part of our family and " lucky for him"  he gets to see and hear all of the crazy things that go on in this house.
Below is a list of things we think Lucky Ball would say if he could talk.
1. Come on, give me some food, I am starving ! ( He is a huge, fat fish )
2. Why am I the only one swimming around in their own poo?
3. Why is the big guy always playing GoGo music? Can't a fish hear some Phish??( yes, Hayden wrote that. My boy knows good music ;)
4. What is with the crazy lady always talking to me? The kid gets that I need some peace and quiet.
5. How come I never get to go on any trips? And why do those fish sitters keep setting off the alarm? Are they really capable of taking care of me?( LB, in our defense, we tried to take you last year, but you freaked out in the traveling case.)
6. I do all of those flips at night because I want the kid's attention. Hello, I am trying to chat with you, dude.
7. Can't a fish get a bigger bowl?( umm, LB, you are huge and they don't make a larger bowl !)
8. There seems to be a lot of salmon, swordfish and the like being served...how do you think that makes me feel? Am I next? Show some respect .
9. I am proud of my battle scars. I fought off a one eyed carney right before you won me at the fair . I was pretty sure that is how I lost a chunk from my side . Thanks for nursing me back to health . I think the singing lady made me receiver faster .( LB, most folks feel that way about my singing ...Hayden just whispered ,"I don't ." Hmmm...;)
10. Why do you keep a wood  chipper in the master bedroom?( yeah, that is the GoGo music guy snoring)
11. Haven't you people ever seen a four inch poop before? Stop staring and give a guy some privacy!

Looks like LB learned a lot in his "school":)

A Community of Celebration

We all find ourselves as part of greater communities. Sometimes this is related to where we live, our occupation, religious beliefs, kid's sports,etc. I have found myself as part of the heart family community . It s an amazing community full of strength , hope, courage and support. It is also a community of suffering, sadness and loss. Now, these aren't the overarching feelings this community exudes. It is typically full of positivity, but this week,like many others, my community has experienced loss. This , of course, hits close to home for all of us and is a reminder of the reality of what it means to have a "heart warrior."
For me, this is just a reality check. You see,there are occasionally days that I forget.( it took 9 years for that to happen!) Over the past few weeks, we have celebrated my mom.'s retirement , held Hayden's birthday party, held our Eigth Annual Hayden's Heart Heroes Golf Tournament , celebrated Hayden turning 9( woohoo!!!!) , celebrated my mom's 65th birthday and are celebrating my dad being able to gain some mobility and walk steps  and be cane-free( he climbed into the bug, yesterday!) These celebrations  make me believe , for a few moments or hours, that we have forever. For that, I am beyond thankful . I want to have those times when I am not focused on H's CHD, but on just living life. The forgetting is so nice. But, it isn't reality. My community reminds me of reality as I watch new parents struggle as they join this community and prepare to face the challenges and uncertainty and reminds me, again, as we watch  one of  of our own, a brave heart warrior, gain wings. ( this one is like a punch in the stomach.)
So, what do I take away from this? ( sigh) I become more aware of the reality my family may one day face and I am reminded of how important those celebrations are. And, selfishly, I am reminded that I have today to laugh with, hug, kiss, and fuss at my boy. It wasn't us and for that I am grateful. But the thoughts of another family in my community suffering this loss will not be far from my thoughts.
I am thankful to have joined this community  because I know they are a community of celebration ; celebrating amazing heart warriors as they live with their families , but also celebrating the lives they lead as they gain their wings.