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.

I dare ya...share it.

So, I was watching the news yesterday ( Not an everday activity for me. I find much of it to be rubbish. I do NOT need to hear a singing dog. This is not news.)and the co-anchors were discussing New Years Resolutions. Now, most of you know how I feel about resolutions...also rubbish, but this exchange grabbed my attention. They suggested that in order for people to keep their resolutions, they should turn to social media for assistance. ( You can see how absolutely sucked in I was, right?)The idea was that by making a public posting of your resolution, you'd gain support from all of those following you and be sure to meet with great success! Add in the bonus of public humiliation in case you fail and we have a BRILLIANT idea.
I then asked myself, do we really, truly need to read everyone's resolutions and then offer them "support"?
Here is what I envisioned happening if you all got on board with this plan:

High school friend posts: I resolve to stop flirting with that guy in my office and will no longer meet him in the backseat of his car after work. I post: Hey, name of high school friend. How's is going with your resolution to stop being an adultress?
A Neighbor Posts: I resolve to lose weight and cut out carbs. Me, upon seeing said neighbor at Panera: ( Wacks bread out of her hand!) Whatcha doin with that bread? You weren't gonna eat that, Miss No-Carb? Right? How much weight have you lost? What? Can you speak up? The guy over there didn't hear you.
A Colleague Posts- I resolve to drink less this year. I post: At work or at home? What about the illegal prescription drugs you pop every five minutes? Do those count or does this JUST apply to booze?
A Family Member posts: I resolve to stop lying to get out of family committments. I post: So, how are you healing from that fall on the ice? Oh wait. It has been 55 degrees. There is no ice. LIAR.
A Sorority Sister Posts: I resolve to work out every morning ( I might skip mornings after a good night out-) .I post: Are ya working out? Cuz every day you post about your plans for that night. Hey ,party girl, why don't ya stay home. And then hit the gym. Lifting your arm doesnt count.
Random Acquaintace Posts: I resolve to stop doing that thing I do. I post: What? Being vague? Posting cryptic messages?
A Dear Friend Posts: I resolve to gossip less. I post: Farewell, dear friend. We will no longer have anything to talk about.
My Mom posts: ( Well, she doesn't post. She uses my Dad's FB account. Let's pretend.) I resolve to stop going on crazy diets that sound absurd to all other human beings. I post: OH, you mean like the one where you can only chew food and not swallow it? Or the one where Dad hides in the closet eating Oreos because he is starving?
Rob Posts: I resolve to spoil my wife and give in to her each and every whim. I post ( each day): What day does this resolution thing start???? I just asked for a massage? Did you make the bed? Hello? Reolution?

So, you see, this likely ends poorly all around. Your social media network of " friends" is not the place to find life support. For that, rely on the people you actually speak to. In person. ( unless your resolution has something to do with clearing up that halitosis) Othewrwise, all of those other folks are pretty much just waiting for you to fail so they can post a snarky comment. People, trust me on this, don't share too much. And quit with the resolutions.
I resolve to keep on being me. ( Sorry to dissapoint those of you who were hoping for a new an improved me.) And, to wait quietly in the wings for you to break that resolution:-)

Happy and Healthy to you and yours.From me and mine.