....and then....

.....365 days ago, on Wednesday evening, the team to prepare for the organ transplants came out to Memorial Children's Hospital, and they started working on our boy. It was very traumatic for me and Henry. They checked his organs for suitability. They put a vest around my Luca and then turned on a machine. It was horrifying to me how that machine was shaking his body, he started vibrating and it was just awful for me to watch. This vest, they explained to me, will clear the lungs of any mucus, and the walls of the lungs will be clean after the treatment, the mucus will be suctioned away from the lungs and although I understood, it was just so sad to watch his poor little body move and the camera going down his throat and they kept checking for clean lungs and repeated that process over and over. I felt on the inside a huge regret for ever having agreed to all this. A huge part of me wanted to scream- "stop it, leave him be, just let him lie in peace"... and although I understood they needed to do this to prepare the organ, I just could not bear to watch. Then I was told he does not feel a thing.... that was even worse and I felt he did not get any respect. I tried to tell myself I know he would want to help others and give life, but the visual of all this was so hard for me. It went all through the night and then they still did not know if the lungs would be suitable. I thought - are they kidding ? THIS boy is an amazing athlete, a swimmer, a soccer player, a runner, he uses these beautiful lungs all the time and they are AWESOME.... I felt so challenged and started hoping they can be used, and in the end they did get used.
I sit here now and cry remembering that night, and the morning when the actual organ harvest began. I was not allowed to be by my sweet Gian-Luc, it was so hard to let him go with them I was so afraid he would be scared and lonely without my protection and me by his side, but I sent him with people I trust, and then, on Thursday morning at 10:59am, he took his last breath and that was it, he went to his eternal place of peace and joy.
 I know he helped 4 people and I hope they are all well now. I want to hear from them and get notice how they are doing, but I think I have to take the first step. I will maybe one day.....
Luca went away, away from his body, his family, his only known world, left behind a crushed and shattered place where he once belonged in a happy life, a happy family, left us wounded and broken hearted ..this big void of a person, a being, a character, the one he was ... missing in our life ......but now he is here with us still, not graspable, not huggable, not visible, but I feel his presence often. His siblings remember his presence in the house, things he would say, do, although his laughter can no longer be heard, we remember his raspy voice and miss it so much, the funny things he did, even the arguments with his brother. I miss the way he sat at the dinner table and ate with so much joy, just the joy of eating, I never saw one of my kids love to eat healthy food as much as he did... he would dig into that salad, dressing all around his mouth, huge portions, and when Henry would make him these egg sandwiches, he would eat 2 in one sitting, double bread slices big things... he would eat oatmeal like no other, knowing how it was starting his day just right... he was just the only one... the one I told something once - eat oatmeal before sports - and he would do it forever.... I miss that so much, this agreement, the understanding, the flow that was between the two of us... he seemed to always know what was good for him... dress warm when it's cold, dress cold when it is warm, eat right, play fair, be nice, be kind, be safe, be careful, plan your day, pack your bag early, work hard, care for others, be a good brother.... he listened to all these things, the common sense told him, mom is trying hard to do what's right for you.... he was so appreciative of me....I know and that might hurt the other kids, but I know that I will not ever have that strong strong connection with any one of my other kids. This unspoken understanding, the bond, the band, the cord that seemed to connect us, although the cord is cut at birth it was still there... the invisible cord....that is it. It was like that since he was born. Can your child be your soul mate ? I know he was and I cry over my boy and the loss I have every day, every single day. Sometimes loud, sometimes quiet. He knows I am so sad, and I know he does not want me to be so sad, but what does he expect...? I miss him so terribly and I hope he understands that sadness.... until we meet again, when I take my last breath and my heart stops beating.... then I will be at peace, like him, with him...it will be awesome to be re-united and I know it will be a long time from now, but I know it will feel just like the blink of an eye once I am there. Until then I will pass my time, wait my turn, love my children a lot, care for them and raise them to the best of my abilities. That is all I can do and I will focus hard to do a good job. I am still a mother. I am strong for them and will stay strong only for them, until my time comes...

52 weeks

... so I am at Target tonight and my mood is just down - one of those days, and driving home I suddenly realize that actually going by the day of the week, tonight, 52 weeks ago we were spending our last evening with Luca in our middle.
The Friday was busy, I was at a friends baby shower, Gian-Luc was home with the 2 younger siblings. We talked on the phone, he was funny and kept saying "yes ma'am, yes ma'am"... jokingly when I told him a few things to do over the phone. One other guest and I at the shower were talking about him being a little funny guy over the phone with me. Driving home from the baby shower I knew I had to rush to bring Gian-Luc to a friend's house for baseball practice, but it would be a tight schedule with Niko's birthday party that same afternoon. I suddenly decided - something we usually don't do - to let him skip the baseball practice and instead come to the movies with us. I called him on my drive home to let him know, he was surprised and glad he could come to the movies with us. Why I did that I have no idea but I am so glad I did !!!
We drove to the movie theater and met with Niko's guests. Gian-Luc was excited to be part of our little trick, we had taken a huge big box and covered it in wrapping paper, making it look like a gift, we filled it up with snacks and drinks for everyone and Luca got to carry it in, he probably felt like he was on a secret mission....
We watched the Smurf movie and I sat on the edge of the row, next to me Francesca and then Gian-Luc. It was a silly movie and there were many moments we looked at each other and smiled, laughed and I am happy to remember he had a good time.
We went to YoYogurt after the movie and ate, unpacked gifts and I remember that Niko got a sky ball from one of his friends.
I chatted with mom's who met us there and suddenly Luca came inside the shop
 (they had played outside with the ball) and he looked all guilty. "mom, I accidentally threw the ball on the roof" - I was so mad and said "good luck getting it down"... I was so mean....sadly I can not take that back now.... another guest must have overheard the conversation and went to the bar next door, which had a roof top patio, he came back with the ball and handed it to Gian-Luc. I thanked him and it turned out he was the husband of Adrienne's HS soccer coach... what a small world. Luca smiled again and all was good.
We drove home and my boys and our neighbor girl were sitting in the 3rd row watching video clips on the neighbor girls phone. They had a good time.
At around 10 pm we called Gian-Luc up from the basement to send him to bed, because he had a baseball game the next day.
The evening ended with a "good night" from him walking by us in the living room....that was it....

Earlier today I was thinking how much I wish I could go back to that time in the hospital, just hold him one more time, just kiss him one more time and squeeze his hand. I want to talk to him, tell him things that I did not tell him a year ago. How different would the conversation be? I don't even remember all the things I told him laying besides him in that hospital bed. I remember I massaged his legs, moved his feet, rubbed his skin,  I held his hand and held his hand and held his hand and looked at his short little fingers, I did all kinds of things and nothing changed.

People, people who - I suppose - don't really know what to say, and don't know how much I would appreciate them saying nothing, those people have been asking me in the past few weeks "so, how are you feeling with the anniversary coming up?".... what kind of question is that ? The anniversary - in the dictionary it says: The annually recurring date of a past event, especially one of historical, national, or personal importance.
Personal importance - yes, wanting to remember it ? No - I really don't want to remember the 13. the Saturday, or the 18. the Thursday... the anniversary should be today, the day I really want to remember - happy times, our life before - smiling kids - not a care in the world. It is like tomorrow a year ago our life as it was known ended.
So back to the people and their silly question. I don't want to answer this question - or I want to say "how do you think I am feeling with the anniversary coming up ? - no different than any other day - hurt, sad, heartbroken, depressed - nothing has changed" do people really think the answer will be "we are doing fine, things are much better, we will have a big party on the anniversary"....
Should I just say "I prefer not to answer this question"?

I have been meaning to tell another story, actually two stories that are uplifting and show me how Luca is with us and watching over us wherever we are. We went to Arches National park in July, and as the kids ran ahead to the car, Henry and I were talking and crying, about how Luca would have loved this park and how wrong it is that he was not with us on this vacation. We took this picture at the park
 
As we left the park and drove across the plains towards the highway, Domyniko pointed at the sky and showed me this unusual cloud. I looked closer and felt so glad to see what I saw. This cloud was formed exactly like the arches we had just seen, the ones we had wished Luca could have seen with us. I saw the arch in the sky and just knew, I knew that he put that there to let us know he was right there with us, he had his arch in the sky and it was beautiful !!! It put a smile on my face and I said "Luca, thanks for showing us your arch, I know you are right here with us !!"

 

The other story just happened today. I was really struggling today because it is what it is. I am on the phone with my friend, we are discussing the Ascent, and what we need to bring, wear, etc. I am on my cell phone with her. Now it happens a lot on my smartphone that I loose calls or buttons get pushed because the touch screen is so sensitive and my cheek just does stuff to the screen. So as I am saying to my friend "check the bottom of your email there are some good pointers for the race" ... all of a sudden I hear on my phone, out of the blue 

"Hi this is Luca, leave a message" ... my heart started racing... I starred at the screen.... sure enough, my phone had dialed Gian-Luc's cellphone....now here is the crazy part... my friend had called me, so my address book was not even pulled up, I was on my main screen and how in the world did my phone dial this second call in? Anyways, I am sure that Luca did this and I was thrilled to hear his voice. It was a shocker but it just all makes sense to me. He is here and he is communicating with me.. letting me know he is here and all is ok.

So, in case you are wondering and thinking about us. Things are still the same, first day, 10th day, 5th month, or one year.... it is all the same. surreal, unbelievable horrible and nothing that should have ever happened. Why did this happen? Why? That question will never go away. My answers to myself change at times. I am currently thinking he was curious over something that he heard about... smart smart boy but just not thinking this one through.

I am imagining the way his spirit slipped out of his body like the people describe who have near death experiences... they float next to their lifeless body, watching people trying to revive them, then once they are saved they slip back into their body. So, I imagine his spirit floating in his room, looking at his lifeless body with a belt around his neck, and he is thinking in panic "wow, what just happened to me? NO NO NO, this was not supposed to happen.... oh man, I am in so much trouble".....

That is what I imagine happened and I was not even there to save him...