Grants, Grants, and more Grants.


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

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.



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.