Five IS a magic number!

Five years. Sixty months. Two hundred and sixty weeks. One thousand eight hundred and twenty-five days. Two million six hundred twenty-nine thousand seven hundred and forty minutes.

That is how long it has been since March 30, 2009.

So?  So! This was the date of Hayden's Fontan ( most recent surgery). Today, it has been five years. FIVE YEARS! In some ways, it seems so long ago and in others, it seems like yesterday.

Hayden's physical wounds have healed and faded scars remain. There are many and each tells  a story all its own. The telltale " heart patient" scar adorns  his chest, but others, from drains, emergency pigtails, the ventilator sitting oddly on right side of his mouth, the scar on his neck where he was canulated for ECMO, all mark their territory on the rest of his body. I know their stories, but sometimes forget.  They like to remind me at odd times. Like in the midst of Hayden  belly laughing, I'm drawn to the scar on his mouth ( I know that no one ever notices this but me). The scar says, " Hey, you.  Enjoy this laughter. Laugh with him. But, cherish this moment. He almost didn't have it." I see it as their job to keep me from forgetting. They do it well.

In theory, forgetting would be beautiful. My sleep would never be haunted, my days would never contain the weird sinking feeling that occasionally sneaks up on me out of nowhere and stops me in my tracks. Yep, being delusional would have its perks, I'm sure. But, I can't and don't want to forget. Forgetting would  mean that I didn't have the appreciation I have for every minute with my boy. That appreciation has given me so much . It allows me to well up when I watch him laugh, enjoy every snow day at home with nothing to do, care less if my plans get canceled, and live , fully, every single day.

My fear of losing Hayden is very real. It almost happened. A lot of times. It was horrible and awful and blech. I know it could happen at any time. Because of  amazing medical professionals and a boy with a fighting spirit, he is  still here today. But, today is today and each day brings new promise, but also new fear.  Tomorrows aren't promised to us and I know that. BUT,  we have had five, amazing years of tomorrows!

So, today is a day to celebrate. And, I love a good excuse to celebrate:-) My boy has defied  odds, fought hard and made the last five years amazing. He is, hands down, the  best gift I have ever received as well as the best lesson I have ever learned. As I tell him, he's the best thing I've ever done. I am in awe of him and envy so many of his character traits.

So, in honor of five years, I ask that you do something in fives. High five someone, eat five M&M's, shoot five baskets, have five glasses of wine ( bad idea?), tell five people you love them, or just hug someone and extra five seconds( or minutes!)

I plan to reflect, appreciate and celebrate with my boys . ( And, probably, read old blog posts and cry.)

 

FIVE!!!!!!!!!!!!!!( yelling it, laughing and crying at the same time)

My Germaphobic PTSD

My hands are so dry from repeated washing that they are actually cracking. Lotion doesn't help because it will get washed off within minutes. You see ,I am fighting off a cold( for my " crazy" fighter tactics and homeopathic remedies, contact me;). A cold is no big deal, right ? It isn't , unless you have a kid with a chronic health condition of some sort. In that case, you go into crazy ninja germ fighter mode and do all you can not to " share the love." That has been and always will be the case with us. So, while Rob is calling me Typhoid Susie , I am doing all I can to not get really sick and also keep this shit contained. To me.
We are certainly not new to this . Some of you get our yearly Fall email reminding you how dangerous it can be for Hayd to get sick, to please let us know and we will change our plans, but will not ask you to change yours ( even though you seem to think it is ok to bring your kid places with a fever while carrying a puke bucket for him/her),how we really appreciate you helping us out with this , etc. ( email not sent this year because so few people actually listen and I have given up on this aspect of society that believes they/their kids can't miss out on things even if they feel miserable and are projectile vomiting ).  I have digressed. We have a good deal of experience with this, but sometimes, despite our efforts , we share the germs.
Every time I get sick, my mind rewinds to an incident that occurred when Hayden , now 9.7, was just four months old. I had bronchitis ; my itis of choice. I was still on maternity leave and felt like crap. I was doing all I could to protect Hayden and was so, so stressed about getting that tiny, fragile baby sick.  My efforts were futile and he came down with the crud. Because he was so young, had already had one open heart surgery, spent a month in the hospital , was on a slew of meds and was scheduled for a Cath and surgery in the near future, we panicked and called our pediatric practice ,immediately . We were scheduled to see whatever doc was available for sick appointments that evening . Not a problem. We were grateful to be seen. The appointment was fine. Very standard. We had never seen this doc and found her very straight forward, but not personable.( I prefer a chatty doc).The usually questions were asked."Has he been around anyone who has been sick?" I explained that I had been. Exam. Diagnosis ; upper respiratory infection. We were given the look fors we are so used to; change in color , retracting , wheezing, lethargy etc.  We were sent on our way. Rob headed out with Hayden as I proceeded to check us out . The doctor followed me and stopped me. She asked if I understood my baby's heart condition , if I knew how serious it was, if I knew he could die at any time and lastly, if I got how I , his mother , had endangered his life by being with him while I was sick? She said that she didn't think I got how reckless I had been.  At this time, I am pretty sure my face turned bright red and I was about burst. I did think pretty quickly and retorted with something sassy, yet clear that I was educated and most certainly did get it. That I knew my son's condition as well as the risks . And that I certainly had not intended to get him sick. I then politely thanked her for making me feel like crap.( but really wanted to just say, "Fuck you. You have no idea .") And I left . And cried. Because no matter how much you know you've done the right thing , your kid's doc putting you on blast , just rocks your world. Not to mention how guilty I already felt.
Pause here:Many of my friends love this doc. I chalk it up to her being good with healthy kids and their families? Needless , to say, we remain with that practice and ADORE our regular doc, but have not and will not see that B again.
So, I was traumatized. And , I think experience a touch of PTSD over this( and many other events related to H. Lots of research out there on the topic of PTSD and caregivers .)I relive it every time I get sick. I play it in my head. And , YES, I know the risks for Hayden. Yes, I worry . And I do get it.
So, I will continue my homeopathic voodoo and obsessive hand washing . And fretting. And if H gets sick,despite my ninja germ fighting efforts,  I will feel guilty . And will revisit that damn day over and over again . It is just part of being a heart mom. The crappy part.

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.

The Reality of it All

This hit me last night and I shared my feelings with Rob. .I thought this was worth sharing, today. Really, I just felt compelled to write.


I write this for the families who cannot put into words how they feel. For the families who face a harsh reality every day.

(Age 8.5- Mexico)

As I read and listen to the comments from friends, family and colleagues regarding last Friday's events at Sandy Hook, I become more and more aware of the intense anxiety so many are facing. Worries run the gamut, but mostly focus on how much people love their kids, can't imagine living without them, are anxious sending them out in the world, couldn't imagine planning a funeral, plan to live life to the fullest and cherish every smile, laugh and moment. These are new and overwhelming emotions. They are awful and difficult to deal with. They can be consuming. I am so sorry that you are experiencing them.

I have felt them every single day for the last eight and a half years. Each day, every one of these concerns is in the back of my mind. To be quite honest, some days, they are in the front of my mind. You see, my reality, and the reality of every parent/family member of a child with a chronic health condition, is what you are experiencing now. We do this every day.

A flashing light indicating voicemail, mid-day at school, makes my heart race. In the thirty seconds it takes to play the message, typically from a concerned parent of one of my own students, I run thorough a zillion scenarios regarding Hayden. Then, I breath. Until the next worry comes along. And it always does.

I have spent the past eight and a half years hoping, not expecting,to reach milestones. I just wanted him to come home. I just wanted him to remember how to eat. I just wanted him to walk. I just wanted him to make it to Kindergarten. I just wanted him to not get that cold/virus/bug his friend had. I want to see him reach his Bar Mitzvah, graduate from high school, go to college...And my list goes on.

I have known for eight and a half years that there are no promises or guarantees. Most of you are feeling that, now. For you, this is fleeting. ( Seems hard to believe, but it is.) It may not feel that way, but soon enough, you will go back to your regular lives. This will become an event of the past, albeit a horrible one. Normalcy will be restored.

For me, and all of the other families out there with kids who have chronic health conditions, it never, ever goes away. The worry. The not knowing. ( That is the worst.)

With all of that said, don't worry about me. I am fine. I am more than fine. I am happy and so blessed. My family laughs ( like crazy), loves ( passionately) and lives( every day to the fullest) . We, like so many other families out there, have no choice. It is always our reality.

( Age approx.  10 days- Johns Hopkins Children's Center)

It's all New



" Pop, Welcome to the Zipper Club!"

 So, the past few months have been busy with lots of cardiac adventures. ( Isn't that a fun name for them?)
On the positive front, Hayden is doing great. He had a  Cardiology check up on August 2nd and  there was much good news to report.  The boy has gotten taller and put on weight. More importantly, his heart function looks better than ever and his tricuspid valve leakage is now considered MILD!!!! ( That is a really, really good thing). He even got to drop  one of his meds, and, it was a diurectic. His next check up is in April. That's right, eight months. That is the longest we have ever been allowed to go and we couldn't be happier. I  have 7 more months before I feel like I want to puke in my purse:-) ( That is how I spend the week prior to  Cardiology appointments. Yes, I lnow howe utterly  irrational that is and I plan to continue doing it. Thanks.)
On the less than positive front, my father decided he wasn't getting enough attention and needed to be part of the cardiac adventure, too. While inpatient  for a hip replacement, it was discovered that he had a 95% blockage to the main artery of his heart. He needed bypass surgery. He  was hospitalized for  seven weeks and faced  multiple complications. Some folks will do anything to get  more attention ;-)
Hayden tried to offer up advice, but really can't remember much of his hospitalizations...thank you ,Didaudid. So, he  decided to pose for the picture above, write his Pop a  note and welcome him to the zipper club.( I know many of you have not seen H's chest. He actually isn't shy about his scars, at all. He just likes to wear surf shirts, a post-op necessity that has become habit for him. Hope  you aren't put off  by it. They are all part of H's story.The  smaller ones are all from drainage tubes/pigtails, the long one is from his open heart surgeries( duh), the one on his mouth is from a sore caused by being on a vent and the one near his neck is  where he was prepped for ECMO- but thankfully, didn't need it.)
So, as I type this and reflect on the time of year, I can't help but feel a great sense of appreciation that my two heart warriors are doing so well. I know that even though the past few months have  been difficult ( and my Dad still has  much recovering to do), we are blessed in so many ways. As we gathered together last week for Rosh Hashanah, we noted  how blessed we  were to all be  together and to simply be. This evening and tomorrow will bring more reflection on the past year and optimism for the year to come. I know my fast will  be meaningful this year, as I have much to reflect upon. I also know that blessings come hidden under the icky stuff, sometimes.
I hope this New Year brings health, happiness and peace to all of you.