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.