crying happy tears...

Since Hayden's heart journey started almost three years ago, there have been a lot of sadness and a lot of tears- but thankfully, a lot of those tears were happy tears shed several times throughout Hayden's life. I want to share some of those happy tears with you...

When he was born, Hayden was able to be held for one minute before rushed away and I will never forget the first time our eyes met. Happy tears...

After Hayden's first open heart surgery, I had to wait 5 long - very long - days until I could hold and comfort my baby and I will never forget the moment the nurse and doctor gave us the go ahead and I was able to hold him in my arms. Happy tears...

When Hayden was exactly three weeks old, we were discharged for the very first time and that night I watched as my two children sat next to each other and watched our first 'family movie night' together as a family of four. Happy tears...

Hayden went back into the hospital soon after that night and we were there for a very long month and while one of his aunties was visiting us in room 11 of the CICU, Hayden shared with us his very first smile. Happy tears...

After a long month in the hospital, the charge nurse walked into our room on Mother's Day and surprised us with those magical words~ "So, you, want to go home today??' Happy tears...

While recovering from his first open heart surgery, we were informed Hayden had suffered a significant brain injury that could lead to cerebral palsy or epilepsy. Upon finding that out, we began working hard with different therapists throughout our stays at home. I'll never forget the day our PT told us she still saw no signs of this and was so happy with the way his body was developing and improving week by week. Happy tears...

And before Hayden had his second open heart surgery, he had a follow up MRI to see how his brain damage had changed, if any, from the first MRI. When his neurologist came into his reovery room and told us Hayden's MRI no longer showed any of the damage that his first MRI showed, I fell to the floor of that POD sobbing the happiest tears I have ever shed. I literally couldn't believe it- but knew it all along. We never really got the chance to tell anyone about it, since less than two weeks after we found out, Hayden was suffering from a fatal brain injury and then those happy tears just didn't matter anymore. But as I live each day, I also re-live each day I had with him. When he was alive, I lived in the moment and didn't reflect on anything really- and now thats all I do- reflect on every single day of his life. And this one was one of my favorites for sure. Hayden cured his own brain injury- his significant brain injury that would likely cause cerebral palsy or epilepsy. Thats a reason to shed happy, happy tears...

2 years of survival...

Its been a while since I've written a new blog- mostly because my summer was happily occupied by my two living children- but I've been wanting to get back in the practice of blogging often again and am finally finding some time to dedicate to it.
Just under a month ago we honored Hayden's second angelversary in heaven. The month of August overall was so tough- the lead up to the 14th and the tragedy that happened to our sweet Hayden and to our family two years ago on that day was eating me alive. I could feel my whole demeanor change and once again felt the pains of the anniversary affecting my mood and my internal body. I felt the pains of loosing him in my chest just like I felt after he died. Anniversaries are so hard- and it took me a while to figure out just what it was and is about those dates that makes them so difficult. For me, its the pain of wishing- pleading- for a time machine to take me back to that day, that time when the doctor inserted the tube into his chest and punctured his heart. I relive that day far too often but on the anniversary, it is pure torture leading up to the time that it happened. I find myself thinking about what was happening at each tick of the clock from that day two years ago. If only I could just go back to that time, five minutes even before it happened and change the outcome. Change anything about it so that it didn't happen. Take Hayden and run far away with him, keep him safe- keep him alive. I know in my heart that isn't possible, but the thoughts that I could go back and change it haunt me all the time.
This past year overall was tough. Tough because of course Hayden isn't here but also because people don't ask about him anymore. There's nothing new to report- no new milestones to share. The chances of Hayden coming up in conversation with friends is rare- which is so hard for me because like any other mother, I want to talk about my children and what their newest 'tricks' are. But there aren't any new tricks for Hayden- there never will be- and the reality of that alone is devastating. Keeping his name a constant in our home is a top priority for me and we do well with making sure his brothers know him for what they can and honor him. Jackson was fortunate enough to know and love on Hayden when he was alive and I am so grateful for his toddler memory in that he remembers specific moments he spent with Hayden. Not because he sees a photograph that trips his memory- but because he genuinely remembers him. He includes him in his family portraits or pictures he draws of him with his brothers and it is the sweetest thing. I can only hope and pray that he continues to do so as his young mind matures and those memories he has of Hayden inevitably fade.
This year on the 16th we went to the cemetery as a family. I originally had asked Jacksons friends mother to keep him for the morning so we could go alone and I could have my ugly cry- but while he was there, Rob and I (and Hudson) watched his videos, heard his laughs, and cried together remembering and aching for this to all still be a nightmare. When Jackson got home we told him we were going to visit Hayden's statue- he already knew that it was the same time a couple years ago that Hayden went to heaven- so he wanted to send some balloons to him with special messages. I asked Jackson what he wanted to say to Hayden today and this is what he asked me to write: 'Hayden I miss you. I wish a wishing flower could bring you down from heaven'...
It was so nice to be there together as a family- holding Hudson, watching Jackson frolick around the other statues, listening to our Sara Groves music that I always listened to with Hayden in and out of the hospital. We let 5 balloons go that afternoon and watched as they went far far away- all the way up to Hayden- all with notes and pictures of love inside of them.
A very close friend and also heart angel mama sent me an email around the time of Hayden's angelversary and a line in it continued to get me- make me just sob every time I read it. It said "I know that we'll be 90 years old in rocking chairs with our grand kids- or even great grand kids at our feet- and we will still cry tears for the babies we lost way too soon'. I know when she sent that email she had no idea how that would affect me- and for a while, I couldn't figure it out either. The emotions it was drawing up were surrounded by a few different things- the thought of living another 50+ years without him was just gut wrenching- but also that I would live for that long and still feel sadness and pain. Its a long life to live when half of your heart is somewhere else. And unfortunately, this friend that sent that to me knows exactly how I feel.
No one can prepare you for the death of your child- no book out there can fully explain what you will go through. The steps to grief are happening but there's no rhyme or reason to them. No 'how to' book- no checklist. When Hayden died I knew I would be broken for quite some time- and often wondered if I would ever heal at all. I knew I would cry myself to sleep more often than not, and I knew I would fear for the rest of my life that I would loose another child and have to go through it all again. What I wasn't prepared for was all the psychological issues that would come along with it. Getting through the time frame when Hudson (our rainbow) turned 5 months and 4 days felt like a non stop panic attack. The weeks leading up were full of sleepless nights and constant panic that he was going to die. His naps were interrupted by me checking on him literally every 5-10 minutes, picking his arm up to see that he would move and was still alive. At night I would wake up in a panic several times thinking he was dead. I was at the gym one afternoon and text Rob to make sure he was up from his nap and all was ok. Rob didn't respond. I text again- nothing. I called- no answer. At this point, I am just starting a spin class and I am internally freaking out. I start panicking, crying- am getting off the bike to come home because I have convinced myself that Hudson has died and Rob isn't picking up the phone because he is gone. I am almost out the door and Rob calls- I, in a panic, crying, heavy breathing- yell 'is he ok?'
We all fear our children will die- well at least I think we all do. But I know for me, I really never thought this could happen to my family. Even though I always feared for Jackson's life, it was in the background, hidden behind the naiveness that it would never happen. Now though- its a forefront. I am in constant panic that it will happen again- some freak accident will take another child of ours. The thought of living in fear for the rest of my life is exhausting. But it is our reality. There are so many more mind f**ks as I call them that come along with loosing a child but its all stuff I just wasn't prepared for.
So- thank you to everyone who reached out on Hayden's second angelversary- I received countless emails, texts, Facebook messages, phone calls, cards and even some beautiful flowers from my best friends that day. It meant more to me than I hope you ever have to know. That Hayden is not forgotten and that you all took the time to think of us is just so touching.
How are we doing? We are doing good!  We are blessed beyond words to have a spunky, funny, loving, caring 5 year old KINDERGARTNER!! and a beautiful happy-as-can-be 7 month old living here with us hopefully for the rest of our lives and we have the most gorgeous orange haired, blue eyed- big as life smiles-angel watching over us with a legacy we've created that is growing by the day ensuring Hayden will never be forgotten. We are doing the best we can with the tragedy we've been dealt- we have survived another year without him and as August 17th hit I felt some relief that the anniversary was over, but couldn't help feel a little weight added that here we are starting another year without him...