I have a chronic illness and it’s called sadness

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I had big plans today. HUGE plans. I had decided on them last night while I was in my bed, crying. I thought to myself, “Tomorrow I’m going to do nothing but stay in bed all day long.” I got up this morning, hopped in the shower and just as I was getting dressed for my “big day,” I got a text message from Stacy. It simply said, “Can you meet for breakfast?” I didn’t even hesitate as I texted her back, “Yes,” and plans were made. A year ago, I would have told Stacy in no way shape or form, could I possibly meet her for breakfast. That was the state of mind I was in last year. Things are different now.

I met up with Stacy and as soon as she sat down she said, “Fernanda is meeting us, too.” “Great!” I said. Even though she just had surgery, she still was popping in for our little breakfast which I was surprised by, but shouldn’t have been since her nickname should be freaking Superwoman. I sat and caught up with my friends and our breakfast ended up turning into a two-hour meal/discussion/sob fest. I listened as Stacy and Fernanda talked to me about some things they know I am struggling with. Mostly about the last week or so of your life. They told me they know how I am regretting not having you die in our home and I listened as they both explained to me why it was that we were encouraged to take you to the Ryan House. I hadn’t really ever heard this from them before. They talked about how scared they were that you were going to die this awful, painful death by basically drowning on your own blood. How for many kids that die of Neuroblastoma, this is what happens. It is usually a very painful and awful death. They talked about how they didn’t want your blood, all over our house. I listened to them, understood and now I feel like I can let this little piece of my guilt go. I do not blame anybody for pushing us to take you there. I know my friends only had our best intentions at heart as they always do. We all sat and cried talking about this. I said something about I only have the guilt because you begged me to go home and I feel like I didn’t answer your one little dying wish. Nobody knew you were going to die so peacefully the way you did. Nobody knew you were just going to fall asleep. I looked up at the girls and one of them, I can’t remember who goes, “But Maya, don’t you think Ronan’s home was wherever you were?” I nodded my head in response. We talked about some more things as we continued to sit and cry at the table.

I told them about the chapter for this book that I am supposed to be working on. I told them about what it is I was thinking about writing about. I watched as the color drained from Stacy’s face. “You can’t write about that right now. You are going to give birth soon. You cannot write about that.” Fernanda’s eyes welled up with tears. “You need to listen to your gut, Maya, but do you really want to write about that, now?” I told them I was having a hard time working up the courage writing about this part of my life, but it was the only thing my mind kept going back to. I listened to them both and their advice. I left our breakfast still unsure about taking on this chapter but I could not think of anything else that I could connect with to write about. I ran a couple of errands after breakfast and cried almost the entire time in the car. I came home and made a decision to head up our mountain to go hiking today. I can’t take another day of not doing a thing, exercise wise. I put on my clothes, threw on your little backpack and off I went.

I didn’t wear my headphones or blast my music while I hiked. I listened to my head instead. I listened to you. I took it slow up the mountain to keep your Poppy sister safe. I felt my head become less foggy. It was as I was coming down the mountain that I decided what I am writing my chapter about. It suddenly came to me so clearly just the way things always do when I am outside, exercising, and listening to myself and you. It felt so good to be free and clear with my thoughts flowing non-stop. I’ve said this from day one; nothing good will ever come from me hiding in my bed. I cannot change the world this way and for sad as I am and for as much as I want to hide, I can’t. Because if I hide then I die and I really don’t want to die anymore.

I said something to your Sparkly yesterday that has been bugging me to pieces. I told him I was working on being less sad. Saying that left a bad taste in my mouth and I have been mad at myself ever since. I texted him today as I was going up the mountain and told him that I had decided that me saying I was trying to be less sad, was bullshit. That my sadness is like a chronic illness. It’s something I’ll always have and it will always be a part of me. I have to accept it, stop trying to change it, and learn to live with it. I will never be able to get rid of my sadness but I can learn to manage it. Managing it for me will come in many different forms and I am slowly figuring out the “medication” I need to treat my sadness. No, not real medication. My medication. The things that work for me and help me through this life. Things like exercising, nature, writing, helping others, surrounding myself with the kind of people who build me up, not beat me down, and trying to live a life you would be proud of. That’s my prescription. It may not be prescribed by a real doctor, it may not work for everybody, but it works for me and that’s what I’m sticking to.

I’m tired from today and the hiking wore me out, but it made me feel good as well. I’ve missed our little mountain so much. I see Dr. Schwartz tomorrow so she can check up on this baby sister of yours. Please keep her safe and sound for me, Ronan. I miss you. I love you. I hope you are safe. Sweet dreams my spicy little monkey.

xoxo

 

This explains why I will never support the American Cancer Society. They do nothing for our kids except use them. Making money off of our kids for your huge salaries!?!? NOT COOL!

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http://www.huffingtonpost.com/jonathan-agin/friends-dont-let-friends-_2_b_2759403.html

Grants, Grants, and more Grants.

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Do you all know of any grant applications that we need to know about? Our board is currently in the process looking for them to help us build our center and continue to help children in clinical trials.. If you do, I’m kindly asking you to forward anything at all to one of our board members, Melissa DiFilippo. Melissa handles all grant funding and nominations for the foundation and would appreciate any leads.

We could use help searching for these grants. These grants could help save children’s lives!
Melissa’s e-mail is melissa@ronanthompson.org

Thank you so much!

I miss you and normal still hurts.

tumblr_mgba04Ybll1qbqtjbo1_500Ronan. Things around here have been quiet. The quiet that is so hard for me. A normal quiet that still makes my skin crawl. You know the normal things that we used to do when you were here. Big breakfasts, family dinners, going to movies, playing sports, watching T.V. as a family. Things like that. I thought they would have gotten easier for me by now. I guess they have because I know I used to not be able to engage of in any of those things and now I find myself being able to do so. It still stings though. I still picture you missing in every single thing that we do. Your brothers had a play date this weekend. I happily sent them up to road to play at a friend’s house. I caught myself thinking, “I wonder if Ronan would be going with his brothers, walking up the road to play.” I pictured the image in my head and it broke my heart all over again that you are not here to do so. Some days I think my heart will heal, but it’s things like that where in an instant, my heart is shattered all over again.

Your brothers seem so happy. This will always be the way I can tell that I am an alright job in life. It will always be reflected in the ways that they are. They are happy, well-behaved, and so connected with us. I am amazed at the way our family has been able to stay so intact and connected. I sometimes wonder if it’s weird that your brothers, for the most part, are always with us. They go to play dates here and there, but for the most part they are with me and your daddy pretty much all the time. We spend a lot of time together, doing things as a family. We both have worked so hard to make sure your brothers know they are safe and loved. I think for a long time they both worried about if they were safe or not. I watched as their innocence was shattered and taken away. I feel like we have slowly put it back together for them. Last night Quinn fell asleep in bed with me. We were watching the Oscars and I was rubbing his back. He fell asleep soon after that and I kept him in my bed with me and held his hand as I fell asleep. Just like I used to do with you. I found your daddy in Liam’s room all snuggled up in bed with him. They were both asleep on their backs and Liam was sleeping on your daddy’s arm, just they way you used to always do with your daddy. The sight of this was so bittersweet. It was so beautiful but so sad as well. I then went back to my bed while passing by your little cold, empty room. A year ago I would have taken 5 Ambien after seeing this sight. That thought didn’t even cross my mind last night so is that a clue that I am doing better? I guess so.

I went to see your Sparkly today. The first thing he said to me was, “What’s going on with Dr. Jo?” I gave him a funny look and asked him why he asked me that. He said, “Because I’m worried. I haven’t heard you talk about her in a long time and you normally won’t shut up about her.”

He knows I have been slacking on my therapy. I gave him a little smile and told him he would be happy to know that I have been seeing more of her and I started telling him about some of the things we have been working on and doing. I told him about the little project Dr. Jo is having some of my close girlfriends work on for me. I was in her office a couple of weeks ago and I was telling her how I am so traumatized by everything that I am having a hard time remembering any of the good things about your life here, Ronan. All I can think about is your diagnoses, how awful everything was, and your death. She asked me if it would be alright to reach out to a couple of my friends and ask them to do a little project that she thinks might help me. I told her she could get in touch with Fernanda and Stacy as they knew you and know everyone around us who knew and loved you. Dr. Jo said she was going to have them ask our family and friends to write down little memories of you to keep in a box at our house that way we can go through them and read them whenever we want. It’s such a simple and sweet idea. I don’t know if it will help or hurt but I’m willing to give it a try. Dr. Jo is also trying to get me to write you a letter. I know I write to you all the time, but she wants a real letter written to you. A deep letter, a heartfelt letter, baring my soul. She’s been asking me to do this for I swear a year now. I tell her I think about it a lot, but I’m not ready to do it. She knows why. She thinks in this letter I will find that you have forgiven me for everything. Even though nobody thinks I did anything wrong, not even you. I still feel like I did something wrong because you died and I am not ready to forgive myself. I still like living in that place of deep torture and pain because I feel as if I deserve to feel this way. Someday I might be able to let this go, but I’m not ready yet. It’s like if I let that go, I’m letting a little piece of you go and I don’t want to let any of you go. Ever. Including my self torturous pain that I like to feel because at least it means I am feeling something. I’ll take feeling something any day over being numb or even worse, happy. How do I ever have the right to be happy again when you are dead? I’ll take my moments of happiness in life but I don’t imagine ever being able to go back to a life where happiness filled me 24 hours a day like it did when you were still here and our family was still all together. I can be happy with my moments of happiness because when I feel them, I am fully aware of them and I appreciate them so much more than I used to.

Your Sparkly asked if your Poppy sister is ever going to get here. I pulled out her latest ultrasound pictures to show him and I watched him as his eyes lit up and he let out that great chuckle of his. In one picture, Poppy has her leg pulled up all the way to the top of her forehead. Limber little thing. He said he knows she is going to be the most beautiful little girl. I just want her healthy. Forever Ronan. Nothing else matters. I told him all about her hiccups and how it was the sweetest thing to feel. Not much longer now. I think I start seeing Dr. Schwartz every week starting Wednesday. I cannot wait to have this little one here. We all need this little piece of life to place in our family again. We all need this little gift from you. I know you know how much. I promise she will grow up knowing all about you. How you are her big brother. Nothing will change that.

This is all for today little man. Time to get dinner ready for your brothers as they will be home soon. I miss you. I love you. I hope you are safe.

xoxo

 

A RoLovie sent this to me. Poppy and you, side by side. I love you. I love my RoLovies, too.

A RoLovie sent this to me. Poppy and you, side by side. I love you. I love my RoLovies, too.

 

Last Day to Vote is Sunday at Midnight! Let’s do this for Ro and all the kids who deserve to have a voice! The world needs to know that kids get cancer, too!

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https://www.facebook.com/parentsmagazine/app_124605674371692?ref=ts

Thank you, Dr. Jo for this amazing blog post. My spicy monkey is so thankful for you.

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http://drjoanne.blogspot.com/2013/02/diagnosis-41107-privileged-dystopian.html

Your song for the night, Ro. It’s been a while and this was one of your favs.

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http://www.youtube.com/watch?v=yFTvbcNhEgc

I am in love with your sister and her hicupps

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Ronan. I have no idea what I did this week. Not only do I have grief brain, I have pregnancy brain to go with it as well. It’s amazing that I can even drive a freaking car. I feel foggy, heavy, sad, tired… this is NOT depression, P.S.

It’s hormones, grief, and pregnancy. And no… I do not need medication. Nor will I ever need medication for my sadness which is just that. Sadness from losing you. My sadness will never go away and I am o.k. with that. It will forever be a part of who I am. I will deal with my sadness in ways that work for me and no pill will be required. I have been daydreaming a lot. About popping this Poppy out and being able to be free again. Free to go running. Free to go hiking. Free to blow off some of this crap that I have been holding in due to not being able to exercise the way I want to or need to. It’s the only thing that makes my head less foggy. I have been missing my running and hiking so very much. That is the time I feel closest to you. When I am connecting with nature and myself. It’s a good thing that this pregnancy is coming to an end because I am about to burst not having the outlet I am so desperately craving.

Most of my week was spent playing catch up with some things and taking care of your brothers while trying to rest up a bit. Your daddy has been the best helper, as always. I am slowly getting ready for your Poppy sister. It is still one day at a time with all of this as I am being very careful about trying to only buy the things we will need right away. I’ve been making Fernanda so nervous about everything that she just went ahead and ordered Poppy’s crib for me, and didn’t tell me until after! Leave it to her to just take things into her own hands. I couldn’t possibly love her more. I sat with Stacy yesterday and went over a list of things I do not have, but will need. Things such as diapers, burp cloths, bottles, a boppy. I ran to the mall today to exchange something and talked myself into going to Pottery Barn Kids to look at some bedding. Your baby sister needs some sheets. As soon as I got in there I was so overwhelmed. I snuck back to take a peek at what they had. I am so indecisive that I almost had a panic attack. I was walking past the counter and the sales lady goes, “Do you need help?” I just politely smiled and told her no. She then goes, “Have you registered?” I just laughed and said, “No, I have not.” I knew I was not getting off that easy and sure enough she goes, “You look like you’re about to pop and you have not registered?!” It was obvious that not only was not registering a sin, but that I had 3 heads as well. I just smiled and walked off. I was not about to explain our situation and how I had tried to register for baby things, but could not even get past the first few things that I was going to register for. I found myself back looking at the boy stuff and all the new Star Wars stuff they have gotten in. I was so sad as I ran my hands across the new Star Wars sheet set and thought how I would have totally bought those sheets for you. All I wanted to do was crawl into the Pottery Barn bed, pull the covers over my head and never come out again. I practically ran out of the store after that. Fuck that place.

I came home and finished cooking up the best meal ever for your daddy and brothers. My short ribs and mashed potatoes. It felt nice to do something nice for all of them. They have been taking such good care of me. Your brothers are the best little helpers around. I knew I wasn’t going to be home for dinner so I wanted to make sure they didn’t have to eat out, again. They were so grateful and thankful for the home cooked meal. I skipped out shortly after they left for basketball practice to go see Dr. Jo.

I spent a couple of hours with her. I’ve been trying to spend more time with her, talking about everything now that I have slowed down a bit and have more time. It feels good. As we were sitting there tonight, Poppy kept thumping me in the same spot over and over again. I said to Jo, “Feel this. What is she doing?!” Jo came over and felt my stomach. After a minute she goes, “She has the hiccups!” OMG. Cutest thing ever. I don’t remember ever feeling you boys have the hiccups in my tummy. The thought of this little baby girl, hiccupping in my stomach, pretty much made my night. I spent the rest of my time with Dr. Jo going over a lot of things and now I am so beat I think I have no choice but to end this and pass out now. I cannot possibly form another thought. Our sessions are always a lot of work and always exhaust me. Your brothers are in my room with me and I am going to snuggle up to them. We all miss you so much.

I love you, Ro. I miss you so much. I hope you are safe. Sweet dreams, little man.

xoxo

WOW! This is all because of you! Thank you so much! For our first marathon, this is amazing!

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We are beyond EXCITED to announce that our P.F. Chang’s Rock-n-Roll Marathon and Half “Run Like A Rockstar” Team raised OVER $94,000!!!! Can you believe it? $94,000!!!

A special thanks to ALL involved! We are already gearing up for next year!!

xoxo

 

Voting doesn’t end until February 24th and you can vote once a day! Thank you! xoxo

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https://www.facebook.com/parentsmagazine/app_124605674371692?ref=ts

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