Tag: Ryan House

All the things I wish I’d known…

Ronan. Fucking fuck fuck fuck. We left AZ. Had to leave AZ. Just like we do, every summer. This year, I couldn’t get out of there fast enough. Last summer, I was in such a fog coming here. I think I was highly medicated. I don’t remember any of it, really. I left you at home. I left your urn and your ashes at home. This year, I didn’t. I put your urn at my feet in the front of the car with me. Safe and sound. I was not about to leave you behind this time. Who reads that last sentence that I just wrote, and is able to just go on with their lives? Who reads that sentence and just goes, “Oh, that’s nice, she tucked her child’s urn, at her feet because he died of cancer… I’m off to go shopping now and not help in this fight against childhood cancer.” I think a lot of people. I think a lot of people who still live in the world of puppy dogs, unicorns and rainbows. Those people, suck. I am thankful for those who read my words, close their eyes, are thankful for all that they have, but that is not enough. I am thankful for those people who do not just go on with their days, without thinking about Ronan or Ava or Esther or Ben or Liam or Hazen or Ezra or Saoirse… I could go on and on and on with the kids’ names that I know now. I am thankful for the people who take the time to donate what they can, because they know want to help against this war that we are in. I am thankful for all the love and support friends, family and strangers. Without all of them, things would not be happening the way that they are.

So, today we packed up our car and headed out of AZ. Out of our house that is slowly killing me. I could not get out of that state, fast enough. I could not take another day of walking past your empty room, not hearing the pitter patter of your little feet or your squeaky little voice. I don’t know how I’ll ever get used to not having you around. I feel like I am a shell of a person. I feel like I am a shell of a person yet I look back on last year and fuck… even that kind of scares me because I was in such a bad place. I think I spent the majority of the summer, in bed, crying. I think I was out doing crazy things like swimming in the ocean in the middle of the night and taking way too many sleeping pills. Looking back, I clearly was trying my best not to live. I seriously could have cared less. This year, I’m not better. Because you never get better from something like this. I’m just different. I want to be around to tuck your brothers in at night. Last year, I did not. And I don’t think it’s such a good idea to go swimming in the ocean, at night. But I am also aware that I still have that streak of crazy that exists in me and I never know when it’s going to come out which in turn usually means my pain needs to be fed by something other than sheer pain. Usually something crazy like a night swim or this marathon that I am running on Sunday and I have not trained a lick for. 26.2 miles without training is a little insane. But whatever. So is watching your baby throw up in bed from the chemo poison that is being injected into his body that is supposed to be saving him, but it turns out, is not. That is truly fucking insane. So is driving to San Diego with your baby’s body burnt to a crisp. Nothing is more insane than that.

We arrived here. Unpacked. Your brothers were hungry. We headed out to go to Costco but it was closed. Your starving brothers could not wait to eat and IHop was our best option. We ended up there where your brothers enhaled bacon, waffles, eggs, pancakes… you name it, they ate it. You would have loved our little breakfast for dinner outing. I was sitting there, thinking about Ava. I’ve been checking in on her all day through Facebook and her Caring Bridge. Nothing had been posted. Just as I was thinking about her, I got an alert on my phone. I read it, felt the color drain from my face, excused myself from the table and into the IHop bathroom I went to puke my guts out. I read the words, the Ryan House. Hospice. Not doing well. That was all I needed to see. It was if I was living last year, all over again. Fucking fuck. No. Not again. What is happening? Why is this monster taking all of these babes and nobody gives a shit? Because if they did, this would not be happening at the rate it is. Do you know what this looks like to us parents going though this? It looks like somebody is lining up these kids, one by one, and blowing their brains out. If that were the case, this country would be in an uproar. But because childhood cancer, is such a dirty little secret, everyone can just look the other way. That’s not fair. That’s not right. People need to start stepping up and making such a stir about this so that funding will be a little more fair. Give these kids a chance to grow up and get things like breast cancer or prostate cancer. Give them a freaking chance, you fucking idiot fuckwads.

Back to Ava. Back to the Ryan House. I’ve been quiet about this for a while. I am not going to say I am thankful that we got to go there, because no parent should be thankful that their child is dying, so they get to take them to this place. Ronan. The Ryan House, should not exist because kids should just not die. If only it were this simple. I did not think we were taking you there, to die. But everyone else knew around us. I thought we were taking you there, to get your pain under control. I was in shock. I still had hope. I heard the whispers all around me. I got the whole, “You are so calm.” Of course I was calm. You were not going to die. I was still going to fix you. I didn’t understand any of what was going on. I remember being confused as to why everyone was coming to see us. I felt like we were zoo animals on display. Like I was the mama bear in her den with her baby, hiding behind a glass wall, while everyone on the outside, was looking in at us. I didn’t know they were all coming to say goodbye. I didn’t figure any of that out until probably a day before you died. That we were not going home. I remember thinking that nobody knew what they were doing. Why was I the one asking for oxygen for you? Why was I the one calling your Dr. Maze to ask him what to do for you, in order to get your pain under control? Why were you getting all bloated? Why were you not peeing? Nobody told me this was all because your body was shutting down and you were dying. Nobody explained anything to me. And then it happened. Your little heart, stopped beating. Somebody came in after you had left. They brought in a tub of water. They said they were going to give you a bath. I remember looking up at them and saying, “No you’re not. I’m going to give him a bath.” I remember this person saying to me, “You are very brave.” I looked up, dumbfounded. “I’m not brave. I’m his mom.” I bathed you. I dressed you. I kissed you. I didn’t hold you. I didn’t know I could have. I didn’t know I could have rocked you. Held you or spent as much time with you as I wanted to. I wish I would have known that. I think I stayed in the room for a while with you. But I let somebody else pick up your body and take you away. I wish I would have done that. It was not anybody else’s job. But I knew none of this. I am so sorry.

Then we left the Ryan House. Bye! Have a nice summer! I think we were checked on and I know we were refered to a place called New Song. But nobody from the Ryan House ever mentioned the MISS Foundation to me, which blows my freaking mind. Ummmm… hello. They work with bereaved families. Ummmmm… hello. I know you are aware that they exist and I know you know who Dr. Cacciatore is, because she is a badass and truly has a gift for helping these families. Where was Dr. JoRo when I was at the Ryan House? Why didn’t anybody ever offer her to me, to hold my hand through what it is, that she knows best?? Why is it, that out of sheer desperation for my life, that I had to find her by screaming in bed one day, not able to get out and googling, What to do if you have a dead child in Arizona? I don’t know. This is what this woman does and she only does this for the fact that she truly wants to help these families. This is not about the money for her. This is only about taking her pain, experience, sadness, compassion, and using it for good. That is the thing that upsets me most. She saved my life, yet I had to find her on my own. There is a very good chance, that I would not be here if I had not found her. I thank you, Ronan, for helping me get to her. But it shouldn’t have been that way. Somebody at the Ryan House, should have offered her to me. She is a gift and I was in shock. I would have accepted someone to walk me through the hell I was about to go through. Instead, I went though it scared, abandoned, and alone. That’s the truth. There were so many mistakes made though out this whole your child has cancer, process. I am not going to stop until they are all fixed. Dr. Jo will be a part of everything that I do. She is part of my fixing the world, package. It’s as simple as that.

I went for a little run tonight. I talked to you about Ava. Please do everything I asked. Now is not the time to rebel, little one. She needs you. Take good care of her. I will try to help her mama in anyway that I can, but I feel helpless. There is nothing that I can do or say that is going to make this easier. All I have to offer her is I know what this feels like. And I am not dead from the pain. I am still here. That’s all I’ve got. That and I am just so sorry. I love you, Ronan. I miss you. I hope you are safe. Sweet dreams, baby doll.

xoxo

ROCKSTARS unite for The Ronan Thompson Foundation!

FOR IMMEDIATE RELEASE:

Rock the Runway For Ronan

Garage Boutique’s Annual “Fashion for Philanthropy” Event

Benefiting The Ronan Thompson Foundation

October 17, 2011

Scottsdale, AZ.

Garage Boutique is a lively place, full of kids, designer duds and good shopping mojo. But Scottsdale’s premiere children’s boutique for infants and tweens isn’t just about clothes. Owner Katie Wilson believes in philanthropy, and her young customers do, too.

This year, local kids were invited to apply to model in The Garage Boutique’s Annual Fashion Show, which will benefit The Ronan Thompson Foundation. Maya Thompson, author of http://www.RockstarRonan.com, lost her 3-year-old son, Ronan, to neuroblastoma, a form of childhood cancer, in May 2011. Maya’s blog has captured the attention of millions of people around the world. The Ronan Thompson Foundation vows to change the fact that pediatric cancer is the least funded when it comes to cancer research.

Wilson said, “Garage isn’t just about style, fashion, & the cool sweet factor, but also about making an impact. My mission is to educate, inspire and empower kids to make a difference in their school, and community through volunteer work and community service. The 75 ‘Rockstars’ in The Rock the Runway for Ronan Fashion Show all committed to raising a minimum of $200 each for the Ronan Thompson Foundation.”

Maya had three main goals in mind when she started up Ronan’s Foundation. To support in research for Childhood Cancer, to help a local family once a year that has been affected by Childhood Cancer, and to help local charities such as The Ryan House and MISS Foundation. The Ryan House is a non-profit in Phoenix and helps care for families dealing with life threatening illnesses. It is where Ronan spent the last week of his life and it is where he passed away. The MISS Foundation is a non-profit and was started up by Dr. Joanne Cacciatore. They are committed to helping families in dealing with the loss of child, from any cause.

The Fashion Show is November 10, 2011 at Casa Blanca Lounge (7134 E. Stetson) in Scottsdale. Doors open at 6pm and the Fashion Show starts at 7pm. Tickets are $25, and available at: http://www.RunwayforRonan.eventbrite.com. Limited tickets are available. For more information, visit our Facebook page www.facebook.com/garageboutique.

 

Thank you to all our ROCKSTAR friends and family for your generosity and support! Please remember that occupancy is limited in our venue, so if you plan on attending it is important that you purchase your tickets in the next 24 hours. Don’t miss your chance to take part in this year’s most rocking event! 

The Chaos and The Calm

Ronan. What have you been doing? I miss you so much, baby. I don’t know where you are, who is taking care of you, what you are up to. I worry about you so much. All day and night. I’m still looking for you, everywhere. I went to Sedona, for the grief retreat. I’m back home now. I wish you were too. It’s so strange, being here without you.

Saturday was the day of the actual seminar. It started at 9:30 and lasted until 4:30, I think. I don’t remember much of it. There were about 16 other bereaved parents there. All with different/similar stories. Nobody there had lost their baby to cancer. Some had lost their babies very early on, at birth. Others had lost their children, tragically, in accidents or just suddenly because life is not fair, and death does not discriminate. We are all part of the same club. The club that nobody wants to be a part of. The fuckthisshitinowhavetoliveonthisearthwithoutmychildandidon’twantto club. It is not a fun club to be a member of. Nobody in that room on Saturday, wanted to out live their child. Everybody in that room on Saturday, would have traded places with their babies, in a heartbeat. But the choice was not theirs. They are still here, on this earth, fighting for their loved ones that were taken much too soon.

As soon as I got there, I felt uneasy. I went into shut down mode. We had to go around the room and tell a little about our story and what we hoped to achieve by being there. I don’t remember much about what I said. I was sobbing. I somehow managed to get out a little about you, in between my sloppy tears falling everywhere. I think I said out loud that I was only there because I don’t want to live this life anymore, without you. I don’t remember seeing anybody’s faces while I was sobbing/talking. I just remember wanting to run out of the room, so badly. I didn’t want to be there, having something like this in common, with all of those strangers. I wanted to close my eyes, snap my fingers, and hop into my time machine that would take me back to living life with you. I begged for our hospital life together. I begged for our Ryan House life together. I begged for anything but being where I was, on Saturday, as long as it involved being with you. I closed my eyes, wished for those things only to open them up and see that I was surrounded by the saddest faces I had ever seen in my life. The faces of 16 other me’s. I pinched myself, to make sure I was not dreaming. I felt the pinch and was taken slam bam right back into my reality. This cruel reality of being here without you. The reality that I would trade any day, for anything but this. I’ll never stop asking why this could not have been me. You deserved to be here so much more, than I do. What a cruel world we live in, that would take the life of you. You had so much to give. You were going to be so many things. I am trying really hard to carry on the beautiful life you would have lived by trying to make a difference in this world. It is so very hard, Ro. You would have done this, so effortlessly. You would have done it with one little wink from your blue eye. Your one little wink, would have changed the world.

After we all went around the room, we moved on to something else. I think we were supposed to be meditating about something. All I could do was pull my knees up to my chest, and cry. I couldn’t focus on anything else. Dr. Jo had been watching me closely since I had arrived. She came over to me and wrapped her arms around me. I told her I wanted to leave. She said she knew and continued to hold me and let me cry all over her. I think she held me for a good 20 minutes, while I went through an entire box of kleenex, snot, and tears. I really don’t remember much about anything else except I think the times I did talk, I said the word fuck a lot. I told the group about the name I had come up for my Grief. Inferno Fuckwad Bob. I think I got some laughs out of it. I truly did spend the entire 7 hours crying. It was painful but so very necessary. I have learned that I have become very good at distracting my grief. I needed to take that day and just cry about you, without stopping. I could have cared less if I was in a room, full of people I didn’t know. I knew they could relate to my pain. They all knew that I was only 5 months out of having had lost you. I was the newbie in the group. The one who had just lost their child, a very short time ago. They all remembered what it was like, being so new to all of this. They were gentle with me and didn’t expect anything. Many of them were surprised that I was even there at all, having all of this be so painful and fresh. Many of them said it took them years to deal with what I am trying to deal with. Which is my grief, I guess. I don’t even know if this is what I am doing as I seem to be stuck on a fucking merry-go-round that I cannot get off of. Round and Round and Round she goes, where ever she stops, nobody knows! Nobody does know. Not even myself at this point. I’ve always hated that fucking ride. And that song.

I met two mama’s in our group. Mama’s that both lost their kids to horrific car accidents. Mama’s who did not know each other, before losing their babies. Mama’s who now have a bond so deep and strong, it is as if they are twins. I didn’t talk to them much, except to learn that one of them had emailed me about wanting to do something for your Foundation. Very random that we both happened to be at this retreat. This mama, does a yearly Tea for her Ellie, who was killed by a drunk driver. She wanted to talk about how she had heard about your story and was wanting to hold the tea in your honor, this year. We exchanged phone numbers and hugs. I wanted to talk to these two mama’s more but I was so emotionally drained that I am surprised I was even able to peel myself up off of the floor and into my car to drive back to my hotel. Before I left, Dr. Jo asked if I wanted to do something with her later. I smiled and told her I would love that and I would call her after I got back to the hotel and rested for a bit. I somehow made it to my hotel, changed clothes and washed my face. I send Dr. Jo a text that said I was ready when she was. She offered to come and pick me up. I gladly accepted.

We went to her house to hang out. It is so perfectly her and I fell in love, instantly. She showed me her home office and her built-in bookshelf that I swear had thousands of books in it. I said to her, I’ll bet you’ve read all of these. She smiled that humble smile of hers and said she had. The brains inside of that woman’s head are something not of this world. Because it is not only her brains that she uses to think with, but her heart and soul as well. That is a very rare combination to find in a person in this day and age. We sat outside, underneath some twinkling lights, and the fresh Sedona air. My brain was pretty much fried but we talked for a couple of hours. About everything, but mostly you. About you and me. Me and you. Us. It was peaceful. I think I even laughed a couple of times. I never laugh anymore and it felt so nice. I don’t have any of my walls up whatsoever with Dr. Jo. There are only a few people in this world that I am able to be like this with anymore. She is one of them. She is the puller, not the pusher. She knows what to do with me, when nobody else, does. I trust that. I trust her. She trusts me. That right there, is everything to me. Plus, the fact that she is a super bad-ass, like the two of us, Ro. Brains, beauty, and badassness. That is a combo not to messed with. If not for her, I can guarantee you, I would not be functioning at all.

Dr. Jo dropped me off back at my hotel around 9:30. As I got out of her car I looked at her, smiled and said, “JoRo.” Her name and yours. A perfect fit like it was always meant to be. Like you have been leading me to her, this entire time. I left her car feeling more peaceful than I have since you left me. Even if the feeling, only lasted for a couple of hours, I was still so grateful. As soon as I got to the room, my head hit the pillow and I was out like a light. I did not even take my Ambien. In fact, I have not taken it in 3 nights. I’ve been able to sleep alright, without it. I have been dreaming, very vividly. I have been dreaming very vividly of everything except you. This makes me so very sad. I just want to see your face. I just want you to tell me you are all right. I just want to hear you tell me, you love me and miss me. You are visiting everyone, but me. Dr. Jo thinks it’s because I want to see you, so much that I cannot. I am fearful that I will never see you in my dreams, because I wish for this all the time. I would give anything to have you visit me. I know you know this. I think I am too caught up in this pain, to let my head clear enough for you to get to me. The pain that is only becoming worse, Ro. Everyday is harder and harder without you.

Sunday was our barefoot hike day. It was just me, Dr. Jo and a Daddy. We headed up the mountain, in silence. At one point, Dr. Jo and I stopped to wait for our other warrior Daddy friend and I whispered to her, that I never did things like this. Like hiking in silence. I told her that I always had my music blaring and loud. She told me it was much easier to be in chaos than calm. She is so spot on. It is so hard to be in the calm for me. Distractions everywhere. The louder the better. The busier the better. It takes courage to be in the calm. I have no idea, what it truly means to be courageous yet. I have a lot of work to do, little man. I have a lot to learn from Dr. Jo. I know you will help me. The barefoot hike was amazing. I felt nothing except for very connected to the earth and I was reminded of my capabilities as a human being. As your mama. I cried for you on that hike. I thought about how much you would have loved coming up that mountain, with me. The thought of not having you there, destroyed me. I looked for you anyway.

Ro baby. I wish I could write to you, for 2 more hours. I have so much left to tell you but I can hardly keep my eyes open. I’m going to have to finish the rest of this tomorrow. It is then that I will tell you the rest of my stories. About how much your brothers miss you. About how I sat and held Quinn as he sobbed for you last night. About how I sobbed with him and told him over and over how sorry I was. About Ellie’s mama. About my Fry’s Shopping experience today and how I was a mad woman crying all over that damn store and then had a “talk,” with the manager about the NO CHILDHOOD CANCER AWARENESS anywhere for September. She must have thought I was a lunatic. I don’t care. She gave me the phone number, to someone higher up than her. I’m on a freaking mission, baby.

I love you. I miss you. I hope you are safe. Sweet dreams, baby doll.

No more plans…..just a new adventure

We started off the morning early as we got up and ready to take Ronan to St. Joe’s for his CT scan and RT. Dr. Maze met us at the Ryan House and then over at St. Joe’s just to make sure we were taken care of. He knew Ro did not need anesthesia, but came anyway to be supportive. After he got us settled, he left and we sat back in a room and waited for the CT scan to begin. Ronan did amazing, as always. He held perfectly still as they took pictures of his little body to decide where they would do the radiation today. After looking at the CT scan, Dr. McBride decided that Ronan’s pain is coming from his pelvic and hip area as the bones there have been eaten away at due to the Neuroblastoma. It is with radiation, that the neuroblastoma cells will be killed in hopes that the bone can heal back and Ronan’s pain will get better.

Thoughout this blog, I’ve always had a plan as far as what we would do with Ronan and his treatment. We chose what we thought was right, and I don’t have any regrets in the choices we’ve made; but it sucks when the plan you think you have in place goes arye. I’m done making plans for Ronan. We are going off for another adventure instead. This time, as long as Ronan remains stable, we will be leaving for San Diego on Sunday. Dr. Sholler has agreed to try something else for Ronan and we as parents, have decided to give it a shot. What do we have to lose? At this point, nothing. We are fully aware of the risks involved, but this is not the time to sit back and do nothing because we are afraid. I am more afraid of sitting back and watching Ronan get worse and worse as the days progress. Woody has been on the phone all day with different doctors all over the states and most seem to think this is worth a shot. We will be admitted to The Children’s Hospital of San Diego on Monday and we are praying that all goes well and Ronan can start treatment on Monday or Tuesday.

Here is a little info about Dr. Sholler and what therapy we will be trying for Ronan:

Dr. Sholler’s research focuses on new therapies for neuroblastoma and medulloblastoma. These neuronal tumors continue to be therapeutic challenges in pediatrics. Dr. Sholler has shown that Nifurtimox increases oxidative stress in neuroblastoma and induces cell death and decreases tumor size in xenograft models of neuroblastoma and medulloblastoma. Nifurtimox also decreases AKT phosphorylation increasing the cells sensitivity to chemotherapy. She is presently studying the mechanism of this drug, drugs effecting metabolic regulation and oxidative stress, and determining the best drugs to use in combination.

Dr. Sholler has completed a Phase I trial of nifurtimox. She has opened and is currently enrolling in a Phase II trial of nifurtimox in combination with cytoxan and topotecan for relapsed neuroblastoma and medulloblastoma patients. She will be opening this trial at other sites in collaboration with Dr. Roberts at Children’s San Diego, Dr. Ferguson at St. Louis University, Dr. Zage at MD Anderson Houston, and Dr. Eslin at MD Anderson Orlando. Within this consortium she hopes to bring new therapies through research to children with relapsed neuroblastoma and medulloblastoma.

Dr. Sholler’s lab is working in collaboration with Dr. Jeffrey Bond at the University of Vermont to understand the genomic differences within patients neuroblastoma cells. Understanding the specific biological profiles of patients neuroblastoma will lead to better understanding of the most effective treatment.

I am trying not to get my hopes up, but this just has to work. Our hearts were so broken when we left Chop as we were so sure MIBG therapy was the answer for Ronan. There are a couple of doctors who are advising against doing this, but there are also a few who are saying, “Why not.” Exactly. I’m not going down without a mother fucking fight for my son. I am not going to let him down as he deserves to be fought for like I’ve never fought before. Woody and I are both in total agreement on this; Woody is fighting just as hard, if not harder for our son. We will do anything we can at this point. There is nothing worse than sitting here, watching Ronan die. Because that is what he is doing. At least if we get him to San Diego, and try this clinical trial; the worse thing that can happen is ultimately, what is happening anyway. I don’t want him to die peacefully at The Ryan House while I sit here and just watch and wait. That’s not how this is going to go down. It’s not in our nature and it’s not in his.

As I have said before, we will not be cruel to Ronan and his needs. If for some reason, his pain gets worse within the next few days, we will of course re exam our decision. As of now, he is stable, his pain seems to be controlled, so we are going to take a huge leap of faith and do this. But it is not a plan at all. Plans always fly out the window. We are just following his lead on this journey of his and will do whatever we feel in our hearts that Ronan wants us to do. We want to take the twins with us, as we feel this is no time to be apart as a family. We need to be together for this part of Ronan’s journey. I’ve had enough of leaving them behind and so has Ronan. As long as we are together, Ronan will be happy and that is all that matters right now.

I got out of The Ryan House today and went to the twins’ baseball game. It was hard for me to be out in the real world, as always, but I did it for the sake of my twins. It’s hard for me to hear the conversations of others around me now as I hear bits and pieces of people complaining about the petty things in life. If they only knew how good they all have it. I kept thinking to myself about the baby boy whom I left back at The Ryan House, who is so sick with cancer and how we as parents, have been told that there is no chance for him to be cured. How am I supposed to go out into the real world anymore without it hurting so badly? All I wanted to do was run back to Ronan, to kiss him for the millionth time, tell him how lucky I was to be his mama, how sorry I was that he was hurting so badly, and promise him that we would get him better. I have been making this promise to him since day one. I did today for the sake of my twins’ but the sadness I felt while I was there was unbearable. Ronan should have been there with me, running around, getting dirty and watching his big brothers, play ball. I would give anything in the world to have those carefree days back with him.

I cannot sit here and wish for the past back though. The past is gone as we know it and we have to focus on the here and now and what we need during this time as a family. What we need is to be together and to continue to fight for Ronan. Each day that we don’t, we get closer and closer to losing him. He is just too special of a little boy to let go so easily. This next part of our journey is going to be hard, due to Ronan not feeling well anymore; but I know as a family, we can get though it. I’ve always loved the saying, ” Adventure is the spice of life.” It’s time to take on this new adventure and tackle it together with all the love in the world that surrounds us. I’m not giving up on hope, love, faith or Ronan. He is my baby and I know him best. I am going to listen to my heart and soul on this and we are going to turn this thing into the most positive adventure yet. If my son is going to die, it is not here and it is not now. I’m not accepting that this is the way he is supposed to go.

We have to be at the clinic early tomorrow for blood work and I’m assuming platelets for Ronan. I am also going to try my hardest to go to the twins’ school for the Mother’s Day Tea. Their little hearts will be broken if I do not show up. I have to be there for them and as hard as it is for me right now due to never wanting to leave Ronan’s side; I cannot let them down.

Ronan is sleeping peacefully so I am going to snuggle up to my little bug. Thank you all for sharing our story and loving us so much. I’ve tried my best to keep up on your comments as they mean so much to me. I am in awe of the love that surrounds us and will be forever grateful and inspired to be a better person because of all of you. So many of you love us without even knowing us. You’ve taken a leap of faith on our family and I feel you fighting right along with us. Thank you so very much. Sweet dreams my darling friends.

xoxo