10th Fontanaversary

Todays are never promised and ten year’s ago, I didn’t think we’d see this one as a family of three. Ten years ago today was Hayden’s Fontan( 3rd open heart surgical correction). That day was the hardest of my life. Handing over my 4.75 year old ( who didn’t feel ill) was gut wrenching. The waiting and over ten hours of surgery( that were supposed to be five) and three hours on heart/lung bypass were brutal. Him coming out with his neck canulated to most likely be out on ECMO( full life support) that night was devastating. There was no taking turns that night . Neither of us left his bedside as he hung between life and death.His bedside was guarded by gaggles of medical staff  working furiously to keep him alive.That was not the only moment like that during his recovery. He struggled. A lot.We almost lost him. We made some hard choices. We thinned out my wardrobe because I threw away the clothes I wore knowing they'd only be a horrible reminder. We saw things that can’t be unseen or unfelt . I can hear the sounds, smell the smells. It is all right there.

At the time , I knew the surgery was required for him to keep living, but I was so angry that we’d done this to him. So, so angry. And guilty. My singing , dancing ,witty, chatting kid was fighting like mad to breathe because he was fighting even harder to live.

Fast forward to today. His 10th Fontanaversary. This day is insane! I cannot believe we are here. He is almost 15! We offered him a party( of the huge variety...a Fontan Fiesta!He thought that sounded ridiculous.) and he opted to celebrate as just the three of us.  While I love a party, this does feel right. The three of us are bonded through common experiences that we just get. He has selected the things he wants to do, I’ve bought and done things and we are doing it up big.

It’s a crazy , emotional , kind of day. 

Ten years have passed and he’s become a really cool  young man. He has very sassy teenagery moments and has a vicious eye roll.  He takes his medications without a thought. We are quite over being afraid of his blood thinners and give him freedom.( Ok, I try to.) And also test his blood here at home .We’ve been given so much time we didn’t think we’d get. 

With that ten years comes some worries. His heart correction stresses his liver, so we added a new specialist this year.I still freak out when he is sick ( and that annoys him to no end )And , of course, there is his heart. If I look at research , it tells me the further we get post Fontan, the more likely it is to fail. I choose to not think about it very  often. It’s too hard to come back from that place if I go there, but I know it is there. Always looming.

Hayden will always be a person with a medically complex condition. It will not go away .  No cure. However, marking this decade of life is a tremendous milestone.

This week, he sat with me and read the blog posts from that time period .  It’s not easy for me to do that . The emotions are palpable. He said,” I know you are gonna be so weird and cry.” Ummmm, yeah. I did. While it’s not easy to look back ,  it is important for him to understand what he’s been through.  It’s a reminder of all that we have today. 

Today! Today is about life. Celebrating. Living.

Today is about my boy and being able to talk to him and touch him.Have him with me. Trust me, none of this gift is lost on me.

I feel so honored to be Hayden’s parent and share this with  Rob. Rob’s an amazing partner during the difficult times and an amazing partner in crime during the less difficult times( also super fun to make fun of the teenager with ).

Our family of three is a unit of one. This weekend, we will whoop it up 10th Fontanaversary style.( Which, is totally a made up thing, so it is whatever we want it to be!)

Thanks for being a part of our journey . 

Heart hugs.

Heart Momming Waves

The wave metaphor seems appropriate for this post. After all , I am at the beach. More importantly, heart momming comes in waves. There are waves of relative peace and calm( but not totally), waves of unease, waves of anxiety and waves of sheer panic.
The last 36 hours have me riding my boogie board on the waves of anxiety.
On Thursday, Hayden got his head when he fell off a tube on a water slide. He also hit has back. Because he takes bloodthinners, beach Ali switched to heart Mom mode. Fortunately, aside from a headache for a few hours and some pretty , purple welts on his back, he is totally fine.
Just as I popped up from that wave , and took a deep breath, I got walloped over the head with another wave. This one stronger, more intense. The kind that knocks you down and , tosses you around and puts sand in your crotch.( too much??)
Through a friend whose son had a “boring” cardiology check up( thank goodness for boring! ), I found out that Hayden’s cardiac surgeon is leaving Hopkins. He has been there for 15 years and assisted on two of Hayden’s surgeries and performed several others. He agreed to disagree with me on a major care decision and later embraced me telling me how much I taught him . “You knew. You knew what he needed. I learned to listen to the moms, thank you for that.” His words were sincere and came from his heart .( moments later, he helped us pull Hayden out from a moonbounce that someone’s unplugged while he was still in it) This man is not only an insanely skilled surgeon, but he’s a keeper of knowledge. He knows the bizarre physiology of Hayden’s bizarre heart. He knows the trials and tribulations Hayden’s body has faced. And, he’s leaving.
This wave is a rough one. All last night, I tossed and turned  in my own ocean of anxiety. If and when H needs another surgery, I had always imaged it being performed by Luca. I trust him. I will now have to build a relationship and trust with someone new. And it sucks...sand in your crotch kind of sucks.
We lost our pediatrician of 12 years about a year and a half ago. I cried. She, too, knew every detail. I interviewed and embraced a new pediatrician. He has been excellent and allows me to lead and to fill in blanks , but it’s not totally smooth sailing because he hasn’t ridden all of the waves with us.
This fresh wave of anxiety is impacting many other families in my heart community. We are all feeling pretty tossled by this latest wave of anxiety.
My hopes are high and fingers are crossed( although they are also gripping my boogie board with a death grip) that Hopkins will land a total rockstar to fill these shoes.
Until then, I’m hoping to go walk the beach and perhaps catch a wave of calmness.
*apologies for typos...this was penned on my phone and not the way I usually blog

The Sloppy Sandwich

The  sandwich generation is defined as a generation of people, typically in their thirties or forties, responsible for bringing up their own children and for the care of their aging (ailing )parents. The sandwich generation has become my life over the last year or so. There is nothing at all delicious about this sandwich. It’s big, sloppy and gooey. Basically , a hot mess. Not the kind of sandwich you crave, but the kind that ends up all over your hands, dripping down your arm and then staining the front of your cute new top.
In this sandwich, I am the cheese. A think hunk of havarti holding both sides of the bread together. There are days the havarti is super melty and gets stretched way out . There are days it’s firm and both sides of the bread stay in place, but never quite perfectly.
You see, the sandwich is so very complicated. It involves the bottom slice of bread ; my boy( school, activities, being a mom to a teen , time with him) and the top slice; care for my dad and support for my mom. In between is me( the havarti) with all of my other stuff. I have my Bertie and trying to spend time together( having conversation about something other than the slices of bread...a rarity ), my job( full time , outside the home , amazing but draining kids with special needs), my role at synagogue (trustee, 10th grade teacher , social action chair, education committee), HHH( book drive and prepping for tournament), Hopkins( FAC and patent mentoring) and my friends ( who have been awesome about checking in).  In addition , there are doctors appts, groceries ...life. There are days that everything involving the havarti is a mess. Is totally falling out of the sandwich. There are days when one slice of bread doesn’t get toasted. The other side requires too much attention. Or both slices get burned because I am trying to pay attention to both and not doing either very well.
If you know me, you know I don’t do “ not doing something well.” I like things done well. I like things neat and tidy. This sloppy sandwich is really testing that.
As others who are part of this sandwich generation, I’m busy trying to do what cheese is supposed to do ...bind . That involves writing myself notes,taking calls and texts all time of the day and night , getting called awful names( mental illness causes erratic behavior and irrational thinking), helping with a math question while discussing hospitals...it’s a sloppy, sloppy sandwich.
To be honest, I hate messy sandwiches. I mean , sloppy joe...oh, no. Pulled chicken...not on a bun, that’s no fun. I’ll whip out a fork and knife on a chicken tender. So, this, this sandwich is pushing all of my norms. But I love the bottom slice of bread and I love the top slice of bread . I am a mom and a daughter and those roles now both involve taking care of people. Simultaneously.  
So,  excuse me if I don’t reach out enough or forget to ask how your appt went or to make plans. I am thinking about you and trying so hard to keep up. I want to see you, but my usual role as social director has been set aside. If you ask , I’ll gladly join in.  Or have you over.Although I cannot promise that my phone won’t ring and texts won’t come through.( although for my annual girl’s weekend in March, I am off the grid. 

Off.)Some of you have been here or are here with me now in your very own sandwich. Others of you may get here, or hopefully, escape this less than delicious sandwich.  But if you land here in the cheesy middle, grab a napkin ( or a drop cloth), you’ll need it.

You Can't Stay Here

Typically, this is my place to write about Hayden. This post includes some bits of him, as does every aspect of my life, but usually he is tied to firsts, not lasts.  This post is about lasts. You see I have packed  my desk, supplies, files and mementos away in boxes. I have  walked into the door of the old FHS for the last time.( and hopefully killed my last roach, flushed my last bowl of brown water and heard my last conversation through a paper wall).

For the last twenty years I have worked in the same building. This is almost half of my life and it is the longest thing in my life aside from Rob. While I am not a sentimental, " stuff" keeper, this building holds memories and traditions that I will keep  with me forever. I entered here in 1997 as Ali Silverman. I returned in 1998 as Ali Lazorchak. While here I moved into my home and and six years later  gave birth to Hayden. I have watched friends get married and have children, and shared in celebrations with colleagues. I have attended funerals for colleagues, their children and students. I have  laughed so hard that I've cried.  I have cried.  I have shared in the joy of friends retiring or becoming administrators. I have shared in the pain of friend's diagnoses and battles.  I have had the pain of friends leaving.  I have taught in 9 different rooms. I have watched so many staff come and go.  I have taken on crazy responsibilities that have allowed me to grow or become frustrated ( vending machines?). I have seen student successes and disappointments. I have felt the love and support for Hayden, Rob and I as we have fought through surgeries and extended hospitalizations. I met my best friend.  I have lived a good part of my life in this old girl. While it is certainly time to go , and demolish her as we move into our new, modern digs, it strange that everything has become a last.

Traditions, unlike things, are insanely important to me. I have passed this down to Hayden. Years ago, when  a restaurant we used to go to  regularly  with a group of friends ( who are now scattered about the country) closed, he sobbed. Not because the Cracked Claw was so amazing ( although it was lovable) but because it was a last. A last time we'd gather, eat crabs, drink beer, off-track bet, and be together there. This is how I feel about this move. It is long overdue and this building is gross, but it represents a tremendous chunk of my life and experiences.

While I am not usually sappy, I got teary packing my desk the other day. I do not want to stay here, nor am I really sad to move. It is just the lasts that are hard. Turning in keys, closing my door, walking down the hall, stomping a roach,  walking out , looking over my shoulder...all lasts.

I am ready for the next era of FHS. Better, cleaner, higher tech, more beautiful, a better place to serve students , but  filed with old traditions and new memories. And in ten or so  years...a few more lasts

Thanks for the memories old girl.

" You don't have to go home, but you can't stay here..."

I Never Wanted to Be a Mom's Day

   I never wanted to be a mom.( Stop gasping and pick up your gaping jaw.) I like control, order, organization and a plan. I don't like chaos, unpredictability or messes.   I didn't spend my days waiting to start a family, begging to hold any baby I caught sight of or oohing and aahing over booties. But, I fell in love with a young man who had his beautiful blue eyes set on having two children. As part of the marital bargain, we agreed on one child ( plus the exchange of one cow, two goats and a three legged chicken).And I  hoped and prayed that as time went on, he'd change his mind. He didn't. After six years of marriage and me pushing 30, I knew I had to hold up my end of the  deal. Several ovulation kits later, on 10/30/2003 , I became pregnant. Then I puked. All day. Every day. For 22 weeks. It was a great time!

    I will not recount Hayden's birth or diagnosis. You have heard that tale by now. But, in the end, I became a mom. Not just a mom, a mom to a child with a chronic health condition. A heart mom. We are everything that regular moms are, just with a little bit of spice added. We are this crazy dichotomy of characteristics. Fierce, yet terrified. Hopeful, yet hopeless. Savvy, yet helpless. Controlling, yet out of control. And the list goes on. The mom that never wanted to be a mom got tossed into the throws of momhood with a vengence. 

     I cannot say that I fell head over heels the second Hayden was born. To be honest, I was too sick, too scared and too unsure to feel much of anything. And, having my own baby did not make me a baby person.( I am still not.) But as time grew on, so did Hayden and I found a love that is inexplicable and deep. There is something about fighting to survive that makes a kid an old soul. And Hayden is that. There are far too many things that I love about him to list, but the one  thing I love the most is that he gets that I am Ali and not just Mom. ( No, he does not address me as Ali and no I  am not one of those "my kid is my friend" people). Hayden has always seemed to get that I am not just his. I am Rob's. I am my friend's. I am my parent's. I am my brother's. I am my student's. I am mine. And still his.

    Do not get me wrong. I take great pride in raising and caring for  Hayd and I work effing hard at it. A ton of my time is committed to him.  A zillion hours of worry are from him. But, it is not my sole identity. I never wanted that. I never will.  That does not mean that I do not love being his mom. I do. I love it in ways that words cannot describe. Last year, for Mother's Day, I gave him a gift. I thanked him for making me his Mom. I thanked him for all he has done to better me as a person and to shape the way I prioritize my life. As I stated earlier, I did not just land the part of mom, I landed the part of heart mom and that role not  is not an easy one to play. ( nor is regular mom...before anyone gets upset with me). I know, it is ironic, the girl who didn't want to be a mom got the difficult mom part. It is like casting the tone deaf girl as the lead...absurd, right? Naw. You see the tone deaf girl might bring a new dimension to the role, just as I have brought my own twist on motherhood. It may involve cussing freely and pretty much any topic being fair game at the dinner table,  while running a  crazy tight ship, yelling about crumbs and being pretty demanding, but it is my twist. It is my way of doing this.

     As  yet another Mother's Day approaches, I still find it hard to believe that I am someone's mother. Someone really let ME have a kid? I also cannot imagine not being Hayden's mother.  The intangible gifts he has given me have made me a far better person than I ever was before. That part of my he owns is full of all of the good stuff, the hard stuff and the fears that lie ahead. It is the best part of me.

 I love being Hayden's mom. But, I still  like control, order, organization and a plan. I don't like chaos, unpredictability or messes.   And, no, I don't want to hold your baby.

Eight is GREAT!!!

The last six months have been challenging. At this point, all I can do is laugh because each time I turn around, there is yet another challenge to face. Not true, I can also throw my jacket on the driveway in hissy fit form, like I did the other day.(It felt really good!) It has been hard, at times, to remember to be grateful and how much I have to be grateful for.

That goes out the window today. Today is our big day.  It is Hayden's Heartaversary! Today marks 8 years since Hayden's  Fontan ( third open heart  surgery in a series of three surgical corrections that let him , ya know, live.) March 30, 2009 is a day of both celebration and reverence. I celebrate that fact that Hayden is here  for me to  chat with, laugh at/with, make fun of, discuss literature with, listen to play music,nag,  show me his chest hair ( literally a hair), fuss at to get moving, assign tasks to, snuggle, listen to him prep for his Bar Mitvzah, travel with, annoy , watch sports with,  get giant eye rolls, listen to his tude and get pats on the back and the tightest hugs from. Each day , when he walks in the door, I feel a sense of relief. It is another day he has conquered. Another day he has returned to me. Another day he is here. I have no choice but to celebrate the crap out of that. I do feel gratitude.

The reverence for this day is harder to explain. " Revere the Fontan" ( imagine my voice really deep when you read that) , sounds odd. But it is how I feel about this day. It commands my respect and  deserves to be honored. It is a period of time that is etched into every fiber of my being. It was horrific, draining, terrifying and joyful. I watched Hayden fight  for his life and teeter between life and death , repeatedly. While I live  with that idea, daily,in 2009 it looked to be reality. Yet, somehow, defying odds and the   predictions of our incredible medical team, Hayden came through and has thrived, thus far. The path to get there was what has created the reverence I feel, coupled with the trauma that recreates so many moments from that time period, again and again. You'd think that eight years would muddy the details or lessen how vivid the images are. It does not.  They come to me at random times. In my waking hours and in my dreams. They can be haunting. The most haunting is a memory that I cannot shake. Hayden was in respiratory distress . I was holding his hand and trying to lessen his fears. We'd been chatting . Communicating well. Then he said something and I couldn't understand him. He said the same thing again and again and again, for hours and hours  on end. I never figured it out. But I have not stopped trying. It continues to drives me crazy. At the time I felt like I was letting him down. Today, I just feel guilty that I didn't  figure it out. Maybe I could have helped him. I dreamt of this, just last week. I shared it with the boys . Hayden just thought I was crazy and I'm pretty sure Rob wanted to puke. It's moments like those that I'll carry with me forever . It's moments like those that cause me to revere that period of our lives. It is moments like those that do not let me forget or let my guard down.

Today , eight years later , I'm just in awe. Hayden is a pretty typical almost 13 year old. Aside from the fact that he's got this odd wisdom about him and a love for life that's unfaltering( and takes daily meds, and gets his blood taken at our kitchen table). Don't get me wrong , he can be an ass. And drive me nuts. But he also drives me to be a better version of me . One that is a bit more like him.    

 On this day, I always leave you with a message . This evening , hug your kids for 8 seconds , kiss them 8 times , tell them 8 great things about themselves, give them 8 desserts( then blame me!). And sometime soon, let them do something you otherwise wouldn't . Life is far too fragile and short. Celebrate it! ( Eight fucking years!!!!! )

It's the time of year when we transition . There are graduations, weddings , move ups and just the shift into summer. Emotions run high. Life moves quickly . Things are busy. So busy.

I'm usually not such a big fan of celebrating the transition from grade to grade. It is an expectation that you complete preschool , not an accomplishment . 

 Hayden is completing 5th grade and will be leaving elementary school. He will also turn twelve on the 22nd.

As these milestones approach , I am finding that I'm really excited , amazed and grateful . Mostly , I'm in awe. He's still here . That's really what it comes down to for me . He's defied odds that were stacked against him. He's here to reach this milestone .

As my friends are feeling emotional that their kids are old enough to head to middle school, I am feeling thrilled.  They want to hold onto each moment and keep them as little people . I want Hayden to grow and soar , even if that means we are closer to him growing up.( oh, to see him grow up!)The fact that Hayd is here and able to move on to middle school is the way this milestone plays out in my head . I realize this seems off, odd, maybe morbid? But it's how it goes for me. I've seen him struggle for each breath, I know the reality .

When he was a baby I was asked to respond to things I wanted to see.  I could have listed exotic locales ,but I didn't .I listed them out as Hayden milestones . Hayden turn two, Hayden go to kindergarten , Hayden finish elementary school, etc. As we reach each of these , I feel so grateful and blessed for the gift that each of these milestones is.

It's hard to believe that he will turn 12 in the next week or so. But I'm so thankful we get to see it. While I love his snuggles and dislike his sass, I wouldn't rewind for anything . Each new phase, each year, month, week, day is him living.  So, I don't want time to stand still , I want it to move forward and take us all with it .

As we head into two weeks of recitals, move up, his birthday and the golf tournament , I am feeling unbelievably appreciative that I get to see Hayd reach these milestones . I know I'll be emotional over the next two weeks . Feel free to shed a tear of joy with me or raise your glass and toast to living each day, fully , completely and unabashedly. That's what Hayden does

Seven.

Each March 30th brings a great sense of joy as well as a reminder to never be complacent . March 30th is Hayden's heartaversary. This year marks seven years since his Fontan( most recent open heart surgery ). It's always a special day for us . We get to reflect on how awful, dreadful, miserable and scary that day was , but also to think about how very lucky we are today. Celebrating a  heartaversary is controversial in the heart community . But I don't shy away from controversy nor my belief that another year removed from surgery is absolutely worth celebrating . I can't help but celebrate all the amazing things Hayden has done since March 30,2009. Particularly since he wasn't expected to last past that night . The rest of this is all nothing short of amazing .
I've written, re-written and played with this post over and over again . Really, what I want to say is that seven years is just fucking awesome! It's crazy, fucking awesome. And deserves every curse that comes out of my terrible potty mouth.
These seven years have brought us peace, routine and a great appreciation for time ( at this time last year I wrote about time being nebulous and I do still feel that way ). We appreciate the time we share with each other, friends , family, traveling , laughing , singing, farting, chuckling , playing , dancing , learning and just experiencing every aspect of life .  We are grateful for the many opportunities to serve others. Yet we are also acutely aware of how precious time is. How fickle it can be. And that it's simply not promised . With each passing year, we feel grateful and anxious at the same time . It makes us wonder what time has in store for Hayden. For us.(yet we really don't want to know ).
I can quickly time travel back to that day seven years ago . I know what I was wearing , where I was sitting ( in a ball), what I ate( nothing -I puked multiple times) , the people who annoyed me in the waiting room( rowdy, snack eating , partying in the waiting room types who didn't realize my baby was dying !), the sinking in my gut that this wasn't going well. It's all right there and I can call it up when I choose to. Mostly I choose not to. But in order to not become complacent and to appreciate the  utter significance of this day, I'll conjure up those memories in order to fully celebrate the unbelievable joy  of making it seven years !
Hug your loved ones seven times tonight . Kiss your dog seven times . Fuss at your kids seven times. Hang out in plank for seven minutes. Eat seven Girl Scout cookies . Whatever you feel like doing to celebrate this day with us !
SEVEN  ( fucking)YEARS!!!!!!

Do you have a tree? Do you decorate? Do you get double the gifts? Why didn't you take off for Hannukah? I have had more questions this year than any other about how my family handles "the season".  I get it. This whole Jewish/Non-Jewish marriage thing is confusing. To others.
 We handle this time of year  in a way that works for us, but in order to understand that, you need some background .
Twenty-four years ago , I met a boy. We liked each other. Time passed and we began dating. Being a good Jewish girl, I asked, " what ( religion) are you? " The response I got was,"I don't know. Let me drive passed the church we sometimes go to on Christmas Eve." At that very moment, I knew I could be with him.  He wasn't religious. He identified with no religion.
Fast forward to six years later .1997. We were planning our interfaith wedding ceremony( we had a unity candle and all the Jewish "stuff" was explained) and meeting with our cantor on a regular basis. We discussed how we'd raise the one child I'd agreed to in the marital bargain . The answer was obvious, but we bantered, jokingly, about it. I said, " there is no choice, you know nothing about your religion ." Rob said, " I know things. I know about the activity scene!" I couldn't breathe. Tears streaming down my face as I corrected him by saying, " you mean nativity scene?" Again, confirmation that this would work.
Rob hates being talked about, but I'll say he is a spiritual person with beliefs that are not tied to a religion. We agreed that our bargained for child and I would be Jewish. Not mixed, not interfaith . Jewish .Our household would be Jewish...all but one thing.
This brings us to the topic at hand. The tree. Lights. Decorating .
Yep. We do them all. It is the one thing my love wanted . Decorating and celebrating Christmas is very secular in my house ( no offense to my devout Christian friends ). For Rob ,it is about tradition, family, friends and giving.  We have no "activity scene", no religious symbols.
We celebrate Hanukkah as a family. We also celebrate Hanukkah with my family . We light candles, eat  latkes, play dreidel and Hayden receives gifts each night, some are quite small and some are large. Traditionally, Rob and I do not exchange Hanukkah  gifts.  It is not a religious holiday. It is a festival . Yes, I go to work. There'd be no reason not to. It simply isn't as big of a deal as Christmas. It just falls in the same season.
We celebrate Christmas with Rob's family and several sets of "friends who are family". We exchange gifts with them. We eat. We laugh and enjoy one another. On Christmas Day , we open gifts to each other. Rob and I do exchange . Hayden gets gifts, too, but way less than us because he gets Hanukkah . His "gift count", so to speak is divided.We have goofy traditions and write funny gift cards.
No one gets double the gifts.  Trust me.
Hayden and I love celebrating Christmas with our loved ones. And I can't lie, those first few years were really awkward and totally fun at the same time. I certainly didn't grow up with a tree, lights, etc. I had no idea what I was doing. Gelt and Chinese food, I understood.
Today, most of the awkwardness has gone away ,but  I will say that I'm great at wishing others a Merry Christmas,but  when it is said to me,mix sorta look over my shoulder  and think ,"who? Me?" It will likely never feel natural to me.
Hayden is Jewish . He sees himself no other way. But he loves and respects the traditions Rob brings to our family .
Hayd and I are so blessed that Rob supports and encourages us in our faith. Falling into this world of oy veys and new religious beliefs could not have been easy for him. Nonetheless,he supports us. He always has.
Celebrating Christmas is our support of him.
If Rob were Jewish  by birth or had converted( something that will never happen. Converting for a spouse is something I am very against ,but a topic for another time), none of this would happen. We'd be a Jewish family. There'd be absolutely no reason to have trees, lights, stockings . The Hanukkah bush and Hanukkah Harry are nonsense for those who feel the need to succumb to the secular celebration of Christmas. ( again a topic for another time)I feel like that is a mixed message to send kids and the world, it is not something we would do. But Rob is a non-Jew, so we celebrate. Happily. Joyfully . And with a lot of food!
However you celebrate this season, may it be full of love, laughs and giving.

On This Day

 Facebook. It set me off. Again. Not  someone's irrational comments on politics, vaccinations or a GOFUNDMe for a kid to go to camp,but  that goofy- ass " On this Day" feature. It chose to remind me that  "on that day",  seven years ago, Hayden's Fontan ( surgery) was canceled because he had a cold.

 I read this tidbit from my past while in bed with the boys, last night. ( No, H does not sleep with us. He does come in for about thirty minutes before bed each night).  I shared this memory with them and it led to a conversation about why we would cancel for a cold. While Hayd " gets" his heart condition, he sometimes doesn't  realize how fragile his system can be. We discussed that and how MAJOR that surgery was. ( He knows all about the near death , awful recovery.)

 I looked over to  continue chatting with him and he was doing one of his favorite things...rubbing his belly. It is more of a tickling than a rubbing and it has been going on for six and a half years. One of his nurses did this for him when he was recovering and it not only helped with the itching, but relaxed him. He does it quite often. It makes me smile.

 This belly rubbing requires him to lift up his shirt. At this point, I was on my side and went for a handful of skinny belly. He is crazy ticklish and thought I was going to tickle him. I began pointing to his many scars( not just the traditional zipper, but from chest tubes, emergency pig tails and an ECMO prep) and told him that I knew where each had come from. They are a road-map of his journey. They are rough looking, bumpy and all over the place. Landmarks of  surgeries, procedures and crises. A perfect metaphor for life with a CHD.

I love that we are able to discuss this, but hate that we have it to discuss. I wish with all my might that he'd been born heart healthy, but he has never, ever expressed that himself. I get yanked back into a place of fear, helplessness and despair by certain memories, triggers or belly rubbing. He continues to laugh and smile. I am amazed by his fortitude and in awe of his attitude.

On this day, I choose to be grateful because I am truly blessed to have this amazing boy in my life.

Time

Time is nebulous. It stands still . It flies . It never obeys our wishes . I've learned this lesson over the last 10.75 years.
March 30 marks six years ( SIX!!!!!!!) since Hayden's Fontan( most recent OHS). It's amazing and seems so long ago.  And, also ,just like yesterday. It's like this bizarre time warp. And I'm totally trapped in it.
Over the last six years , I've seen my boy grow, learn and change just like any other heart healthy kid . I've also seen him gain strength and overcome obstacles far more specific to a kid with HLHS. His wisdom and resilience will never cease to amaze me . He seems so impervious to the pitfalls of time.
I, on the other hand, get so caught up in the hands of the clock. I curse at it and send it mixed signals. Hayden is strong and healthy , so I want time to stop. I want to keep him like this forever. Never let go.But then we get close to an appointment and I want time to fly . I can't stand the waiting . The not knowing and unpredictability make me physically ( and emotionally ) ill.

Three women in my life have taught me that I'm not alone on this roller coaster with time . One took time by the hands,  wrestled it and demanded more, on her terms . For her family and herself ( I won't call her brave because she'd deny it, but she decided to change her own fate and tell time to eff off.) Another  lined up her warriors, faith and fighting spirit, for the second time, and has created a truce with time . She has more of it. ( and we all cursed time for the last week as we waited).And a third ,  got caught in times dirty trick of hoping for more, getting some more and then running out. ( Time is dirty like that and sometimes decides to stop spinning it's hands .)

You see time takes on an entirely new meaning when it isn't about how long til dinner or what time shall we meet. When it's about time here with our loved ones, how much of it we have together...how long we live, it just ticks me off .

Today, time has me perplexed. That day six years ago was the worst of my life . I handed my boy over for OHS. We walked him into the OR. We watched as he went under.What was a difficult and long surgery , became longer . Over ten hours. Time stood still . I lived a lifetime in that waiting room. I remember the torrid details of his recovery , vividly . And how time stopped while we lived in a hospital , yet seasons changed in the real world . But then time suddenly sped up and we have had these six amazing years. My confusion lies  in how appreciative I am of this time we have had and how greedily I want so much more of it .

As I look back at these last six years , I know how blessed we are . The laughter, jokes, songs , antics, trips , smiles, friends, family, sports, instruments  ,arguments,parties , meals,  eye rolling , snuggles...they are all time well spent .  As we celebrate this anniversary ( and hell yes, we will celebrate it ), I am reminding myself to make the most of time. Appreciate time . Not rush time . And, hopefully, we will beat the clock.

( Six years !!!!)

For him. For us.

My boy was supposed to play hockey. I have said these words in my head a million times and every, single time, I cry quiet tears. I have never said them aloud or written them( and now everything is all teary blurry). You see, my boy was supposed to play soccer, be tall and strong like his dad, wrestle with his friends, play tackle football in our yard , ride roller coasters , just be a boy . Mostly, he was supposed to play hockey.
It's stupid. The little things we think of when we are expecting a child. We spend time on picking bedding, painting, shopping, selecting the perfect name and thinking about what this child will do. We assume. Sometimes wrongly.
Skippy is what Rob called him before he was born (and sometimes still does). And, in my mind, Skippy was going to play hockey. The smell of the ice (and stinky gear), the sound of the stick, the thud of the puck, the cold air ...all of it was part of what I saw when I thought about my boy.
None of that is possible for him. Half and heart plus blood thinners equals no hockey.
But hockey is just what my wacky brain leeches onto when I feel a sense of loss in regards to Hayd. It's really so much more than hockey that I mourn . I mourn the loss of a heart healthy child. The loss of what could have and should have been. For him. For us.
You see, I don't recall ever really being angry about Hayden's diagnosis . I've been sad, fearful , terrified, nervous, nauseous, frustrated, nervous, nauseous (those two happen a lot), hopeful, thankful and optimistic. There have been really brief periods of time where I felt like it was unfair , but would it be fair for another family? No. No one should have to experience this. No point in going there, so I don't .Many of these emotions are fleeting.
But the mourning, that never, ever goes away. There are times that it dominates my thoughts and times that it lingers deep, deep in the background. But it is always there .
Please understand that I know how blessed we are to have Hayden. He is here with us and my heart really does belong to him.  And I could list all of the things he has done and does to amaze me. But I mourn the loss of the normalcy. For him. For us.
He talks about college and marriage and I say all the right things while my mind races, praying he sees those milestones. I mourn the loss of being able to plan for the future .For him. For us.
We celebrate the hell out of milestones because each one we reach is a gift we don't expect to receive. I both love and hate that. I love that we celebrate, but hate that we celebrate reaching a milestone like making to to 4th grade. It should just be a given, but it's not .
Hayden has amazing friends . They are kind, funny, bright, athletes. Yep, my boy is a sports nut and his friends are all athletes . We sometimes go to their games and Hayden cheers them on. I mourn the loss of him never getting to be a part of a team and us not getting to cheer him on (although I did recently scream and cheer at the bottom of a ski slope as I watched him finish an awesome run... I am a total embarrassment to him;). This is the one and only wish he has ever expressed in regards to his heart...to be able to play sports with his friends. ( Not to have a healthy heart or not to take needs or not see doctors or not have his blood tested at our kitchen table...) To be on a team with his friends.  I mourn the loss of that . For him. For us. But mostly for him.
I've been at this for ten and a half years. There are many things about it that have gotten so much easier. There are things I forget about and things that don't phase me. Then there are things that wack me right across the face and knock me for a loop. They are unexpected, but usually normal day to day  kid things. Things my kid can't do because he isn't a " normal day to day" kinda kid. He has so much and gives so much and I truly am grateful for all that we do have. But I think I will forever remain a mom in mourning . For him. For us.

Double Digits, Baby!

I can't lie. For the last few months, I have been emotionally anticipating June 22nd and its significance . June 22nd is Hayden's birthday .He will turn ten tomorrow. Ten. A decade. To quote him,"double digits, baby !" A tremendous milestone .
For the last ten years, I have checked off milestones and celebrated them. Each one marking another moment of life , of childhood ,that my child got to experience. Each one a gift. An unexpected gift.
It is incredibly hard to believe that we are reaching this milestone. As it is with all parents, time has flown by. As it is not with all parents, we didn't know if we'd get to see this day.
I can't say that these ten years have been easy. I can say that they have taught me more than I thought I could learn. I've learned that my family and friends are amazingly supportive and would( and have) do anything for us. I've learned that giving is so much better than taking. I've learned who I can count on and who runs scared in the face of adversity. I've learned to trust my instincts. I've learned to have hope and faith . I've learned that my "habit" of being too honest is a good thing. I've learned that the man I married is more patient, strong, kind, giving ,loving and funny than I ever imagined he'd be. I have learned that a little, sweet, smart, brave, strong,silly, caring , dancing, always singing , strawberry blonde boy with half a heart has more heart than anyone I have ever met.  Mostly, I've learned to take it all in and enjoy every minute and milestone .
Happy Birthday, Chai. I love you.

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.