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.