Tag: Ronald McDonald House

Feathers, Glitter, and all things Sparkly

 

 

 

Today was a very productive day. My sweet, dear, Fernanda stopped by for a coffee drop off and a visit. She went over my “To do” list with me and helped me decide how to tackle it. We also talked about our little project we have in the works… she has an amazing business mind. More on that when we are further on down the road. Let’s just say the two of us, when Ronan is well, are going to change the world and make the most amazing things come out of this. It is a good, heathy distraction for me right now; something I am very excited about and I am so honored to have Fernanda by my side ❤ It’s so amazing to me, how you know someone through the years, and then something like this happens and your relationship either truly blossoms or bottoms out. Out of this, I have found a very special friendship that had always existed, I just never knew it until now.

After Fernanda left, one of our angels who writes on my blog a lot, but I have never met before, came over to help me out with some things. My new friend, Rita, came and did the mounds of paper work that has been looming over my head like a dark cloud. It took her around 3 hours and I am so grateful for her and her organization skills. There is no way I was going to be able to tackle that project this week. My mind is all out of whack and paperwork is something that has become totally overwhelming to me. Thank you so much, R. You saved my life today:) And Ronan loved having you here! I can’t believe how openly he welcomed you into our home. I am very thankful for that.

I cleaned out our pantry, caught up on all of our laundry, paid some bills, and cleaned and organized all of Ronan’s toys. If I leave here with things like that not being done…. I will drive myself crazy thinking about it. Stupid OCD. I will feel so much better going to New York and knowing that everything is organized and put away where it is supposed to be.

Ronan was a happy little boy today. He did a lot of playing by himself while I got things done. He snuggled up in my arms and we took a good nap together. Snuggling with him is one of my favorite things in the world. He fits so perfectly in my arms. Liam and Quinn came home from school and spent it playing with Ronan. I am trying to let them soak up their time with him as much as possible. They are such good big brothers. I am so excited to spend Christmas with them in New York. I have not done a thing as far as Christmas shopping goes this year. All of the gifts, cards, “stuff,” just seems so meaningless. Woody came home all excited about the gift he has gotten for me and I didn’t mean to burst his bubble, but I told him I didn’t want anything. That is not true; the only thing I want this year is the best doctor in the world operating on my baby. And he already got me that. I couldn’t ask for more at this point. I know I am going to have to get some things for Liam and Quinn, but I think I’ll leave that up to Woody. I can’t focus on stuff like that this year. One of my most favorite things about Christmas is sending out our annual Holiday Card. Not happening this year. Makes me sad; but I’ve got bigger fish to fry. I’ll send you all one on my blog, how bout that;) Think of all the trees I’ll be saving!!

We have a pretty good plan in place for New York. Woody, my in-laws, the twins, The Kotaliks, My mom, my oldest friend, Sandy, whom I have known since I was 5, and Tricia will be coming in and out. Trish and my mom will be with me on my birthday<3 So happy about that. I’ve got a few tricks up my sleeve as I always do as far as ways we will celebrate once Ronan’s surgery is successful. One of them involves glitter… and lots of it. I’m obsessed with anything sparkly and glittery and I used to be a very fun girl. I’ve been thinking of ways we can celebrate and make this milestone something to remember in a very positive, fun way. Trish and I went shopping for hats to wear in New York and I bought a silly feather white feather headband to wear on New Year‘s Eve. Who cares if we’ll be at the Ronald McDonald house…. we will still have sparkles, glitter, and feathers galore. This is our journey and I cannot wait to say goodbye to 2010. Remember how I told you about “Earmuffs??” Or maybe stop reading here….. You know what I’m going to say to 2010?? Adios Mother Fucker! Worst year of my life. 2011 is going to be all about getting Ronan better and healthy.

I heard “Iris” by The Goo Goo Dolls on Pandora tonight. It made me think of Ronan. Cheers to you, baby boy.
And I’d give up forever to touch you
Cause I know that you feel me somehow
You’re the closest to heaven that I’ll ever be
And I don’t want to go home right now

And all I can taste is this moment
And all I can breathe is your life
Cause sooner or later it’s over
I just don’t want to miss you tonight

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

And you can’t fight the tears that ain’t coming
Or the moment of truth in your lies
When everything seems like the movies
Yeah you bleed just to know your alive

And I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I don’t want the world to see me
Cause I don’t think that they’d understand
When everything’s made to be broken
I just want you to know who I am

I just want you to know who I am
I just want you to know who I am
I just want you to know who I am
I just want you to know who I am

P.S.  I totally heart Neil Young and  Johnny Cash. They bring me peace and sing us to sleep every night. Goodnight to all of you beautiful souls out there. Wishing you all health, peace, and happiness. Love you ALL. So thankful for all of you and how you are always keeping us in your thoughts and prayers. Ronan is a fighter, there is not a soul out there like him. I PROMISE you, he will get through this. I can feel it in every fiber of my body and soul. And through this journey, I’ve come to find out how true and right my insights are in regards to my life. I BELIEVE.

Clinic Day

Ronan and I went off to the clinic this morning to do his usual Monday checks of his blood and platelet levels. Poor little guy is having bad tummy aches from the chemo last week. A lot of diarrhea and him saying his tummy hurts. I talked to “A” about this and she said it is a normal side effect from the chemo and to just watch him. She expects it to last most of the week. If it goes into next week, then we will have to do something about it. As for now, we just have to make sure he is staying hydrated. His counts are dropping, but still look o.k. We will expect them to continue to bottom out until the end of the week, then hopefully they will start to come back up. After the clinic, we went upstairs to meet with Dr. Jan who is one of the psychiatrists at the hospital. We only got to meet with her for about 10 minutes due to Ronan’s tummy hurting and him not wanting to be there. She is trying to help me work on some boundaries with Ronan.

We are still waiting to hear the finalized dates for New York. We should know in the next couple of days. It is going to be here before we know it. I am trying to mentally prepare for everything. As long as I have all my ducks in a row here, I should be fine.

Today, I spoke with Lin Sue Cooney from Channel 12 news. She has been playing phone tag with Woody since last week. They want to do a story on Ronan and our family and asked if they could come to our house to shoot tomorrow early evening. It was very last minute, but I am not going to turn down that opportunity. I will let you all know when it is going to air when I find out. I am assuming they will have to edit, etc…. Either way, I am honored. Channel 12 is the only local news channel I watch. Watch out world, this is just the beginning! Little Ronan is going to bring so much light and hope to this disease…. he will be the poster child for it. We have to find a cure. Everyday I hear of more and more babies not surviving. It is gut wrenching to read about and rips me to pieces. I try to stay away from stories like that, but it’s like a bad car accident…. sometimes you just have to look. As much as I try not to, it is a horrific reality check for me and keeps me focused on what we need to do to keep Ronan kicking cancer’s ass.

Tonight we played a lot of baseball outside. Ro has been running around like mad. There is no stopping my little guy. He runs circles around his 7-year-old brothers. I’ve never in my life seen a child like him before. He is so strong willed and determined. I dream about the day that he can just be carefree and happy and not have to live the life of going back and fourth to and from the hospital.

My sweet friend, Jules, brought over dinner tonight and it is always a treat to see her. We tried to catch up for a bit but it was busy around here with homework being done and Ronan wanting attention. We sat and ate dinner as a family, watched a little football, and Ronan fell asleep around 8:30. He didn’t nap today so he was tired tonight. After he fell asleep, I ran to the grocery store so I actually have food in my house. Ronan has been quite upset that there has been a lack of string cheese around here. We are all stocked up for a while. It’s amazing how much food 3 little guys go through. I seriously need to buy stock in Gatorade.

My friend, Gay, is coming over tomorrow to help me get ready for our channel 12 news story. She is going to help me put away all of our Halloween decorations and things like that. That women is a force to be reckoned with. I am SO lucky to have her as a friend. I hope someday after all of this is over to take a big trip with my very special girls to celebrate them and all they have done for me. A girls trip will definitely be in order and way overdue. We have so many plans for when we are done and over with this bullshit. So much of it is just going to consist of being together as much as possible and enjoying every little second of being healthy and free. Our lives will forever be changed, but we are going to change them for the better. This won’t get the best of our family<3 Nobody can take that away from us.

Last Friday night I went down to my beautiful friend and neighbor, Niki’s for a few cocktails and girl time. Tricia and Jen joined us too and I cannot tell you how good it felt to just be with them. We sat, talked, laughed, cried, and laughed some more. I swear this is the first time I have really laughed in months.  And I mean, laughed so hard that you can’t breathe and your stomach aches and hurts. It felt so good to feel something other than pain. I know I am surrounded by amazing friends when they can get me to feel that way and to just let everything go, even if it is just for a few hours. To my Niki, Tricia,and Jen…. thank you for being the beautiful souls that you are and the sisters I was meant to have. You have no idea how much that night meant to me. The only thing missing was our Lindsey and Marisa. ❤ ❤ I thought about them the whole night though and it felt like they were there in spirit. I love you all.

To all of you keeping up with Ronan and this blog, I think about you everyday and I am so thankful that you are touched by his story. It is going to be a long journey but it is going to be worth the ride. Sweet dreams, friends. Be thankful for what you have, who you are, and all the blessings you have in your life. You never know when something could take it all away<3<3 I pray that none of you ever have to experience what we are going through… we will walk this walk for you and hope you take the lessons along the way. 

Magic Medicine… Day 3, Round 3

Today I am happy and my spirit is renewed. I feel really good about things. Just looking at Ronan’s determination and strength gives me such a sense of relief. I always knew he was different and special; he’s always had that twinkle in his eye like he knew he was up for a fight. The strength and support of everyone around us is also so comforting to me. Ronan has such an army of people who are pulling and praying for him. The end result of this will be something good, something big, and something amazing. I can’t feel it in every fiber of my body. He did really well with the chemo last night. No vomiting or anything but he did wet the bed. They are pumping him full of fluids 24 hours a day. He wakes up about every half an hour to pee and refuses to wear a diaper. He usually does very well with this but had a little accident last night. No big deal, we called the nurse and changed his sheets, clothes, and wiped him down. He went right back to sleep after that.

Auntie Karen came by today so I could run home and do my usual routine. I can’t tell you how much that helps me get though these hospital stays. I had a visit from an amazing mommy and new friend, Pamela White. Her little girl, Victoria, is a cancer survivor. Their story is so hopeful and inspiring. Pamela is funny, strong, and someone who has walked in my shoes and has come out the other side with the most beautiful life possible. I know we will now be friends for life. She was very encouraging and we had a couple of laughs about some things like, how wonderful Christmas in New York would be;) Being sarcastic of course. I can tell she and her husband are a lot like Woody and I. Strong, grounded, smart, and would fight as long and has hard as possible to save the life of their child. They are a prime example of bad things happening to good people. But they got through it and are living proof that life can turn out more beautifully than you could have ever expected.

Tomorrow Woody and E.J. fly to New York. Please keep them in your thoughts and prayers for safe travels. I am so excited for the two of them to go out there and meet Dr. Kushner and Dr. La Qualia. I know they will be in very good hands and come back with the answers we need to know that we are on the right path. Between Woody and E.J., no questions will be left unanswered. They will also be checking out the Ronald McDonald House while they are there. That is where we will more than likely be staying after Ronan’s surgery. It is close to the hospital and from what I hear it is a very good support system and very inexpensive which is always a plus.

Wow. How drastically things can change. My beautiful day has turned into a very hard night. I stupidly made the mistake of taking Ronan outside tonight, down to the playground. Duh, Maya. A playground? Poor guy is all hooked up to his machine and all he wanted to do was go down the freaking slide. Well guess what? He couldn’t go down the slide so I had to sit and watch my baby cry, hit, and scream for 20 minutes before I was even able to talk him into going back up to his room. Traumatic to say the least. Once we got up back to his room, he was still mad and obsessing over the playground. It has gone on almost the entire night, up until a few minutes ago when he finally passed out. My friend Stacy came to bring me dinner. She sweetly brought Ro a new Star Wars book that he does not have and that took his mind off of it for a bit, but not for long. Dr. Maze stopped by and Ronan was very grumpy to say the least. Dr. Maze tried to work his magic and asked one of the nurses if he could be unhooked for awhile tomorrow, to at least play on the playground and get some fresh air. She said she didn’t think so but he said he was going to talk to Dr. Wood for us. If that could happen, it would be oh so lovely. Just to see my little guy play and be a 3-year-old would be a dream come true. This week has been hard on him, even though he is acting like such a little trooper. Gay and Cal stopped by after Dr. Maze and Stacy left. Just seeing Cal made Ronan so happy. It reminds him of being with his brothers who he misses so very much. Cal and Ronan played and giggled the whole hour they were here. After he left the meltdown begin and lasted for about 2 hours. He was screaming, kicking, talking about the playground and wanting to go home and see his brothers. I stayed calm, tried to explain everything to him, and tried to distract him. He finally fell asleep after I rubbed his back and sang to him. Needless to say, my anxiety is through the roof right now. I need to go run about 6 miles and scream my lungs out. I know I won’t be able to sleep tonight<3<3<3 Gotta find something productive to do. Starting to write 5 billion thank you notes is sounding really good right about now.

Sweet dreams<3<3 What I would give for that.