Wake up, throw up, go back to bed.

 

 

 

 

Ronan. I am not used to living a life where I am physically chained to my bed. That’s how it’s been this past week. I cannot seem to function. This extreme fatigue and nausea, are mentally beating me down. I’m used to being the energizer bunny. Go, go, go. Get this done. On to the next. No sleep needed. No eating required. Crazy workouts. Although my routine seemed crazy to most, I felt like I thrived in it. Now, since this vampire baby seems to be sucking the life out of me, I can hardly get my head up off of my pillow in the mornings to take your brothers to school. Then I usually come back home, do a few things, but fall back into a coma like sleep for a few hours. I wake up exhausted. Throw up. Get a few more things done. Lay down again. It’s fucking depressing, to say the least. Your daddy keeps telling me that I’m wiped out due to growing a home for your baby brother or sister. I am trying to relish in all the beauty of this but it is secretly making me hostile. I don’t do well with things that slow me down. I miss my workouts. I miss being on the go 24/7. But most of all, I miss you. I got up to do a few things yesterday. I went to see Dr. JoRo. We talked about a lot of stuff. How I am trying to manage everything like my stress level and this pregnancy. I told her the awful dream I had about you and how my memory of you was completely gone. I could hardly get that story out without choking on my tears. I left her office, feeling tired and sad.

I came home and fell into a deep sleep. I’m telling you, it’s all I can seem to do lately. I sent your Mr. Sparkly Eyes a text. “Is this normal? I don’t think this is normal. Do you think I’m dying? I think I’m dying.” He promised me that I was indeed not dying and to stop overdoing everything. He called me a control freak and told me to settle down and to start listening to my body instead of fighting everything. He made me promise that I would rest and put my feet up. I told him I would, but only because he told me to do so. I listened to him like I always do. He always knows best. I spent the rest of the day, resting and trying not to be resentful for it. But truthfully, this slow paced living is pissing me off. Especially when I have to be at home, in this fucking quiet house, without you. I’ve spent about the past year, avoiding our house during the day, because I hate it so much without you here. Now I feel like I am in prison. Trapped inside my own personal hell with your little bedroom down the hall, untouched like you are still here. I wander in it during the day, looking at the last drawing you did on your easel with a permanent marker on the chalkboard when I told you to use chalk so you wouldn’t ruin it. You have no idea how glad I am you didn’t listen to me on that one. It’s one of my only drawings I have of yours. My days feel so sad and lonely without you here, and with me, being stuck at home because I am literally too tired to function. I don’t remember it being this way with you and your brothers, but your daddy says he does. I am blaming it on my old age;) 34 feels a lot different from being pregnant at 25 and 29. 34 and being pregnant can suck it. I know this is what you would want. But it still feels a little like a betrayal to you. Your daddy keeps reminding me how much you wanted a brother or sister. And I keep reminding your daddy that yes, that is right, but it is also because you thought you were going to be here to help take care of him or her and be the best big brother ever. I don’t think you ever knew you were going to die, Ronan. I truly think you thought you were just going to go to sleep and wake up once again, after we got you all better. It destroys me everyday that we now have to physically be apart and I can’t take care of you, look after you, or keep you safe. There is no better place, then here with me. NOWHERE. I will never be o.k. with you being somewhere else. You were supposed to be with me, for the rest of MY life. Not the other way around. I am so sorry that you had to be taken away. That you had to be robbed of our beautiful time together. You should have been the one, watching me die from old age. I should to have been the one watching you die at only almost 4 years old. My heart will forever be broken in a way that is just not repairable. I will fight on, not because I am strong but because I won’t fail you or let you down. No mother is strong enough to survive something like this. A mother doesn’t survive something like this. I didn’t survive this. I died when you died. I just made a choice to get back up and live the only way I know how to live now… by fighting for you and all you were robbed of. I continue on because I know that you want me to make this better for others. It’s not my choice, it’s yours. I choose to live to honor you and everything you stood for which was strength, courage, and fearlessness. I live on, for you because I love you so much. Everything I do is for you.

I came home yesterday to the sweetest thing on our porch. It was a balloon with a card and a little baggie attached to it. I opened the card and it was from some girls that live in our neighborhood. They had spent the last 4 days, selling cake pops and had made about $73 dollars. They said they wanted to help find a cure for cancer and know I would put it to good use. I felt a wave of goodness wash over me. What amazing little girls. I know this lesson they are learning in life and about your story will shape them in a way that they will go on to do amazing things. I feel that way about everyone who hears about you. If that wasn’t enough to make me cry, the next thing was. I opened a letter from someone saying how they had heard your story, wanted to help, but they only had 1 dollar. They taped the dollar to the letter and said they were giving it to me. Then the next letter, from a mom, who’s husband is working 3 jobs, they have nothing, but she cleaned out her change drawer. My cheeks were soaked with tears after being hit with those 3 things. Thank you, sweet strangers. I hope you know I am thankful for you taking the time to learn about Ronan and for every single penny that comes our way. I am going to build something amazing with it. Something unlike anything that has ever been done before. Something these families and kids so deserve when going through something like this. This will be your legacy, Ronan. This will be how you live on and help others. This is my purpose.

Your daddy went out last night. I fell asleep early while your brothers played some zombie fighting video game in the living room. They kept coming in to check on me. I was out cold. It was around 10, that I heard them both crawl into bed with me. “Goodnight, mommy. Goodnight, Liam, Goodnight, Ronan.” Quinn said. Liam chimed in, too. “Goodnight boys, Goodnight, Ro.” I managed to say. I woke up around midnight, your daddy still gone. I looked for me 3 boys in my bed, but I only saw two. I punched a pillow and went back to sleep. I am awake now. It’s early in the day… around 5 a.m. I am up due to feeling sick to my stomach from this Poppy that grows in my belly. I hope today I can manage to be a little productive. Liam and Quinn have a basketball game. You would be so proud of the way they are killing it on the court. Quinn had 18 points last weekend. I know this would be your sport too, if you were still here.

I miss you. I love you. I hope you are safe. I love you to the moon and back, baby doll.

xoxo

 

I’m kinda liking this Philly place

First of all, the RMH here blows New Yorks out of the water. It is straight out of the movie “Benjamin Button.” Old, Victorian, and beautiful. The people who work here are so friendly, helpful and nice. Our room is not hospital sterile at all. It is very cozy and has two of the most comfortable queen sized beds. Holla for that!! No more sharing a tiny twin with Ro. I know we are going to get some good sleep tonight. Ronan has been in a really good mood. He took a bath and played with his Star Wars guys. I unpacked everything and thought to myself how easy it is to make anywhere we stay, a home, as long as we have a few essentials and each other. My friend, Stacy, seriously packed all of my stuff and Ronan’s as well. Wow. She should be a professional packer. She did a better job than I could have done. I told her I didn’t care what I took, and that less was better. I learned my lesson after the New York fiasco. Not making that mistake again. Woody went out and got the essentials. My coconut water, some regular water, Gatorade, and his contact lens stuff. I unpacked all of his things and set up all of his cords for his electronic devices. Felt good to do this for him tonight. He often gets lost in the shuffle and does so not deserve to be. It makes me happy when I can do the simplest things like unpack his bags. He always is so appreciative.

I sent my Mr. Sparkly Eyes a text tonight and just told him that I wasn’t scared yet because I know Ro can do this. His response was, “He will with your love.” I’ve thought this all along. I have such a bond and love for this child that I can get him through this hurdle and back to the other side. I just know it in my heart.

I was bombarded with so many emails today but I wanted to share my favorite one. It’s from my friend, Diane, Ed’s wife. They are the most amazing family. Her email brought me to tears. Thanks Di; you are such a wonderful woman.

Dear Maya – The Strongest Mom in the World!,

I think of you and Ronan every moment of the day.   From your writing and seeing you and Ronan together it is obvious you share a love that is so strong that only the two of you will ever know forever in your hearts.  As I read your posts I feel, and uniquely understand, your pain towards the path and people you are forced to encounter to preserve your special love – mother & son.   Along with all of your family and friends I wish that I could ease that pain, but I also know that will be impossible until Ronan is safe.

I believe that Fate, Faith, and Love are amazing guides.   Fate brings you to places that you never thought you could possible handle, and faith brings you back again from the edge.   Through fate and the unbelievable journey of life – I believe, you encounter the most amazing people, and live through the most difficult of disappointments.   I am so sorry that your MSK experience broke your spirit (however so briefly) and challenged Ronan’s path.  I do believe that it is all a part of each step to make Ronan happy and well.  What I have found from our own journey, is that Doctors are mere humans with many faults, and once in a while bigger brains.   Science and the human body fails us everyday, but we are sometimes shaken more by the failure of people and their inability to understand and empathize.   Dr. K – a scared coward – yes, but believe me…. not worth your energy, time and anger.   When you read back to your posts about your experience in NYC I trust and pray that someday it will be a memory forever etched in your mind as an adventure.  I can only hope you will forget about the doctors, and remember the sanctuary of the RMH, food, Dylan’s candy, FAO, basketball, friends and the comfort you felt in the city.   It is those memories that make NYC a place of peace for Ed & I.  Jack’s treatment and science failed us at MSK, but I left there knowing I would, and could do anything to fight for him.   You have done that!!!!  You are moving onto CHOP, maybe DC, VT, and always home to PCH and your family… but you have proven to yourself and Ronan that you have the ability too endure anything for love!!!

I always felt as if Jack was a gift given just to me.   His amazing life set my path and gave me forever strength.   He showed me what love was really all about.  He made me a better mother to Aidan & TJ, a fearless cancer patient, a devoted wife, a more understanding friend, a grateful daughter, a thankful sibling and I hope in some way a better person.     I know in my heart, you both will win!  You have already won by finding the strength to fight for each other.    You will continue to win as each path, hospital, doctor, nurse, treatment, setback, victory, adventure, gift, and smile, will lead you to an answer, life, happiness and peace.   My angel is watching over your angel on earth!!!!

All my love and respect,

Dianne

I’m super tired tonight and we are going to CHOP at 11 so it’s time to get some rest. Despite all of this travel and being away from home, Ronan is in a great mood. Tonight he said to me, “Mom, you’re so cute. I love you.” I always know when he says this to me it’s because he is happy. At this point, that is the most important thing to me. Him being happy will get us through this. I am going to work my ass off to keep him this way through this next part of his journey. Happy and pain free are my 2 biggest goals right now. I cannot look any further ahead than that.
G’nite all of you sweet people. Thank you for all of your supportive and kind words. You are all the best family/friends/fans we could have ever asked for. I wouldn’t be in such a good place right now if it weren’t for all of you. Please never forget that. As much as you all wish you could help more, you are helping me in ways that you will never understand. You make this road easier to travel. That is one of the hugest gifts I could ever ask for. Thank you for loving us so much.

Sweetest dreams!

xoxo