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