Barley Breathing

Ronan. Everything with you ended too quickly. I thought we would have so much time left together. We had so many plans to fight so long and so hard for you; until we got you better. We had plans for your brothers to spend the summer in NYC with us while we went through your treatments. I’ll never fully grasp how quickly things spiraled out of control. How quickly the tides turned and before I knew it your little life had slipped from my hands. I’d give anything to have you still here; fighting and all. Just to hear you laugh, to see your smile, to have you sleeping next to me. I still cannot fully sit back and think about our reality. I feel like a fish out of water and I have to fight for every breath I take. I’ve never had to focus on breathing in my life and now this takes up most of my day as I often feel like I am not getting enough oxygen to my brain. I now have to sit and making sure I am not going to suffocate and concentrate on getting air into my lungs. This is what it feels like to have you gone. Every second of the day I feel either numb or in so much pain that my body shakes and everything hurts.

Now that you are gone, I watch videos of you on my computer. I touch the screen, hoping that you will come out of my screen and magically appear in my room. You don’t. Instead I am flooded with hysterical sobbing that I cannot control. I don’t fight it. I take this time during the day to miss you so badly that I am inconsolable. I do this alone when nobody else is here. It’s better for me that way. I’m not ready to grieve for you in front of anyone else the way that I grieve for you alone. It is too painful for anyone else to see.

Yesterday, we did the usual stuff around here. We filled our day with errands and organizing things. I walked past your room and noticed your door was closed. I thought for a second it was you playing in your room, but then I remembered that you are gone. I opened up your door and peeked inside. It wasn’t you playing at all. It was Liam. He was sitting on your floor, alone, playing with your Star Wars guys. I cannot even think about this story without it destroying me. I asked him if he was o.k. He said he was, he was just playing. I let him be. I couldn’t even go and sit on the floor to be with him. I wish I could have, but I’m not ready for your room yet.

I went to breakfast with Tricia, Danille, Julie and Marisa yesterday. We sat at Taylors. The girls ate. I nibbled on some of Trish’s omelette and some of Danielle’s bagel. I sat with the girls and ended up crying about you, telling them that I just don’t know how we are all going to be alright. I wish I could say they had some words of wisdom; but they didn’t. And I’m glad they didn’t. That just goes to show what true friends they are. They know there are no words of wisdom for this and they know not to bullshit me. So instead, they sat and listened to me and got teary eyed instead. That was all I needed from them. After breakfast, I went with Danielle and Marisa to Kirland. All the book stores have disappeared around here so we had to go to the one out there. I wanted to get Liam and Quinn some chapter books to read for the summer. I missed you in the book store. I missed you as we walked past the fountain at Kirland. I remembered how the two of us would go there and I would let you run around in the water. I remembered how amazingly tan your skin would get from the sun. My little brown bear. So happy and carefree.

Liam and Quinn had a sleepover at Luca’s last night. Your daddy and I went out for Sushi with Uncle Jay, Charlene, Kenny and Stacy. I was sitting there, trying to enjoy the ambiance as hard as I possibly could. Good people, food, and atmosphere. I looked up and saw one of the doctors from PCH that works in the clinic. I cannot remember her name; but I’ll never forget her face. She was supposed to help us through transplant. I told you that you are everywhere. Stacy was trying to talk to me and I told her I couldn’t concentrate as I had just seen somebody from PCH. I needed a minute to compose myself and to talk myself out of running out of the restaurant screaming bloody murder. I sat and told Stacy how even sitting at dinner just seemed wrong. How could I be out, trying to do something normal like eating dinner when everything is wrong? To do something even remotely enjoyable feels like I am betraying you. I am hurting so badly inside that I should not be out in public at all. I feel like I should be standing in my imaginary hole in my backyard that somebody needs to dig for me so I can hide in it forever. I don’t want to be out, trying to eat sushi. But I know if I don’t, that is when the real trouble will begin. I know this so I talk myself into being brave and doing the things that are now so awkward and wrong to me. I do this to keep some sense of normalcy for you Daddy. So I can sit next to him in the booth and hold his hand. So I can make him feel like we are a part of something normal, together. I do this but I don’t like it. I wonder if I will ever be able to breathe normally again.  I wonder a lot of things, baby.

That is all I can write tonight as I need my mind to shut off tonight. I’m having lots of anxiety getting your brothers ready for summer. I have to pull it together for them as they need me more than ever. I know this.

G’nite my little man. I love you. I miss you. Sweet dreams.

xoxo

We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo <3

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you
Yeah

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide