I might be normal. Or I might just be crazy. Or I might be a little of both. I will never be the same again. Unless you can bring him back.

The parent-child bond is one of the most meaningful relationships a person will experience. Parents who have lost a child can often feel that a part of them has died. The despair and pain that follow a child’s death is thought by many to exceed all other experiences. Parents are simply not supposed to outlive their children and no parent is prepared for a child’s death.

The length of a child’s life does not determine the size of the loss. Parents are intimately involved in the daily lives of young children, and their child’s death changes every aspect of family life, often leaving an enormous emptiness. Parents may be less involved in the everyday lives of older children and adolescents, but death at this age occurs just when children are beginning to reach their potential and become independent individuals. When an adult child dies, parents not only lose a child, but often a close friend, a link to grandchildren, and an irreplaceable source of emotional and practical support. Parents who lose an only child also lose their identity as parents, and perhaps the possibility of grandchildren.

When any child dies, parents grieve the loss of possibilities and all the hopes and dreams they had for their child. They grieve the potential that will never be realized and the experiences they will never share. When a child dies, a part of the future dies along with them.

Common grief reactions

Grief reactions following the death of a child are similar to those following other losses, but are often more intense and last longer. Parents commonly experience the following grief reactions:

  • Intense shock, confusion, disbelief, and denial—even if the child’s death was expected
  • Overwhelming sadness and despair, such that facing daily tasks or even getting out of bed can seem impossible
  • Extreme guilt—some parents will feel they have failed in their role as their child’s protector and will dwell on what they could have done differently
  • Intense anger and feelings of bitterness and unfairness at a life left unfulfilled
  • Fear or dread of being alone and over protecting their surviving children
  • Feelings of resentment toward parents with healthy children
  • Feeling that life has no meaning and wishing to be released from the pain or to join the deceased child
  • Questioning or loss of faith or spiritual beliefs—assumptions about the world and how things should be do not fit with the reality of a child’s death
  • Dreaming about the child or feeling the child’s presence nearby
  • Feeling intense loneliness and isolation, even when with other people—parents often feel that the magnitude of their loss separates them from others and that no one can truly understand how they feel

Read more about common expressions of grief and loss.

Some people expect that grief should be resolved over a specific time, such as a year, but this is not true. The initial severe reactions are not experienced continuously with such intensity; rather periods of intense grief come and go over a period of 18 months or more. Over time, waves of grief gradually become less intense and less frequent, but feelings of sadness and loss will likely always remain.

Developmental milestones in the lives of other children can trigger emotions of grief even years after a child’s death. Significant days such as graduations, weddings, or the first day of a new school year are common grief triggers. Parents often find themselves thinking about how old their child would be or what he or she would look like or be doing if he or she were still alive.

Gender differences in grieving

Mothers and fathers may grieve in different ways. One parent may find talking helps, while the other may need quiet time to grieve alone. Cultural expectations and role differences also affect how men and women grieve. Men are often expected to control their emotions, to be strong, and to take charge of the family. Women may be expected to cry openly and to want to talk about their grief. A working father may become more involved in his job to escape the sadness and daily reminders at home. A stay-at-home mother may be surrounded by constant reminders and may feel she lacks a purpose now that her job as caregiver has abruptly ended. This is especially true for a parent who spent months or even years caring for a child with cancer.

Differences in grieving can cause relationship difficulties at a time when parents need each other’s support the most. One parent may believe that the other is not grieving properly or that a lack of open grief means he or she loved the child less. It is important for parents to talk openly about their grief and for each parent to understand and accept the other’s coping style.

Helping siblings who are grieving

Parents are the focus of attention when a child dies and the grief of siblings is sometimes overlooked. The death of a sibling is a tremendous loss for a child—they lose a family member, a confidant, and a life-long friend. Parents are often preoccupied with the needs of a sick child and then become overwhelmed with their own grief when the child dies. The surviving siblings may misinterpret the parents’ grief as a message that they are not as valued as much as the child who died. Learn more about how to help a child or teenager who is grieving. In addition, parents can help siblings during this time of grief by:

  • Making grief a shared family experience and including children in discussions about memorial plans.
  • Spending as much time as possible with the surviving children, such as talking about the deceased child, just playing together, or doing something enjoyable.
  • Making sure siblings understand that they are not responsible for the child’s death and help them let go of regrets and guilt.
  • Never compare siblings to the deceased child and make sure children know that you don’t expect them to “fill in” for the deceased child.
  • Set reasonable limits on their behavior, but try not to be either overprotective or overly permissive. It is normal to feel protective of surviving children.
  • Ask a close family member or friend to spend extra time with siblings if your own grief prevents you from giving them the attention they need.

Continue reading more on how to cope with losing a sibling to cancer.

Helping yourself grieve

As much as it hurts, it is natural and normal to grieve. Some parents find the following suggestions helpful while grieving:

  • Talk about your child often and use his or her name.
  • Ask family and friends for help with housework, errands, and taking care of other children. This will give you important time to think, remember, and grieve.
  • Take time deciding what to do with your child’s belongings—don’t rush to pack up your child’s room or to give away toys and clothes.
  • Prepare ahead of time for how to respond to difficult questions like “How many children do you have?” or comments like “At least you have other children.”Remember that people aren’t trying to hurt you; they just don’t know what to say.
  • Prepare for how you want to spend significant days, such as your child’s birthday or the anniversary of your child’s death. You may want to spend the day looking at photos and sharing memories or start a family tradition such as planting flowers.
  • Because of the intensity and isolation of parental grief, parents may especially benefit from a support group where they can share their experiences with other parents who understand their grief and can offer hope.

Read more on coping strategies for when you are grieving.

Finding meaning in life

Parents report that they never really “get over” the death of a child, but rather learn to live with the loss. The death of a child may compel parents to reconsider their priorities and reëxamine the meaning of life. It may seem impossible to newly grieving parents, but parents do go on to find happiness and reinvest in life again. An important step for many parents is to create a legacy for their child Parents may choose to honor their child by volunteering at a local hospital or a cancer support organization. Or, parents may work to support interests their child once had, start a memorial fund, or plant trees in their child’s memory. It is important to remember that it is never disloyal to the deceased child to re-engage in life and to find pleasure in new experiences.

Every child changes the lives of his or her parents. Children show us new ways to love, new things to find joy in, and new ways look to at the world. A part of each child’s legacy is that the changes he or she brings to a family continue after the child’s death. The memories of joyful moments you spent with your child and the love you shared will live on and always be part of you.

Screw this day, I’m taking an Ambien. 14 months without you is bullshit.

Ronan. Today is the 9th. 14 months without you. I woke up at 5 a.m. to take Macy to the airport. I hated that she was leaving on the 9th. I came back home and fell back asleep for a bit. I heard the text message on my phone go off. It was Macy. Her flight was canceled and she couldn’t leave to get back to San Francisco, until tonight. I texted her back. I told her that obviously you didn’t want her to leave either, since it was the 9th and you knew I needed her to stay. I went back to the airport to pick her up. We came back home and crashed out in our bed for a bit. I had to get up to take your brothers to basketball camp and I did that while our Macy, slept. I ran some errands. I watched your brothers play basketball. We came home and Macy helped me with the laundry. I looked at her and she could tell I was panicking. I asked her if it was alright if I went Inferno Hiking. She looked at me like I was crazy. It was 115 degrees today. I didn’t care. Please, Macy. I promise I’ll bring water. She said alright. I skipped out of the house. I filled up your Ronan backpack with a few frozen water bottles. I drove to our mountain. I didn’t turn on my headphones. I kept singing in my head some little song about “115 and I don’t care, I don’t care, I don’t care…” It wasn’t a very happy song. I pushed myself up the mountain as fast as I could go. I didn’t allow myself to stop for water until I got to the top. I was dry heaving by the time I got up there. If I would have had anything in my stomach, I would have thrown up everywhere. Good thing I hadn’t eaten all day long. My appetite has been back to not much lately. I can survive off of some string cheese and some fruit these days. I did make Macy and I some of your scrambled eggiess this morning. I ate a bite or two. I really made them, for you.

At the top of the mountain, our bench was too hot to sit on so I didn’t get to stay up there for long like I normally do. I tried to sit down, but my butt got scalded so fast that I quickly learned that when it is 115 outside, a rock made bench is not a good place to sit. I think I almost blacked out for a few seconds. I drank some water. I felt dizzy and thought to myself, “Hmmm. Maybe 115 was not such a good idea. But today is July 9th. It’s a danger day. This is a dangerous thing to do so I will just have to find a way back down the mountain, without passing out.” I managed. I looked for snakes, everywhere. I didn’t see any. I keep waiting for the day, that I get bit by a big rattlesnake. I have a plan of how I know it won’t even hurt because nothing hurts like the pain I live with everyday. I have a plan of calling 911 and telling them where I am, what just happened, and how long would it take for the rattlesnake venom to kill me. Just out of curiosity. I might have to google that one. I got down the mountain, somewhat delirious. I dry heaved again before getting into my car. I got home and took the coldest shower possible. I felt a raging headache coming on. Your brothers were hungry and I had to get Macy to the airport so I dropped them to your daddy and took Macy to catch her plane. She rubbed my back the entire way there. She asked how I was. I told her, “O.k.” She said, “No you are not.” I smiled my fake smile at her. We hugged in the car. We both cried. I got out to help her with her luggage. I grabbed her, held her, and kissed her sweet salty tears that were pouring down her cheeks. I tasted those tears of sadness, pain, loss and love as she loved you like you were her own. Her tears tasted just like mine. I wanted to lick her entire face to make her laugh but I just kissed her tears away instead. “I love you, Mace.” “I love you, too.” she said as I watched her walk away. I’ve been begging her all week to move here. She is our family now. She is the sister I never had but you made sure of it, didn’t you, Ro. You always knew that I wanted a sister so you picked Macy for me. Thank you. She makes everything better when it needs to be and everything sad when it needs to be that too. Everything that Macy brings into our world is always a natural vibe of energy, nothing is ever forced or pushed. She is good as just letting me be and I am good at being myself around her. No need for guards up. No need for fake smiles. That is refreshing for me. She is coming back for your September 29th event. I should know more details about that tomorrow. So, we will save your room for her. I like to lay in here with her too.

I came home with a raging headache. One that I hadn’t felt before. Almost a migraine I guess. Too much sun and the sad memories came flooding in today. I saw us all at the Ryan House. They had taken your body away. We had to go and wake up your brothers. Your daddy grabbed Liam first. I woke Quinn up next. “Is Ronan coming home, too?” He asked me. “No sweetheart. Ronan is gone. He can’t come with us.” Quinn looked up at me with his eyes pouring tears.”Where is Ronan?” “Come with me Quinn, I’ll take you to where he was.” I took Quinn to the bed that you died in. I let him lay in it for a while. He sobbed and sobbed and sobbed. He clung on to your GiGi tighter than I have ever seen him hang on to anything in his life. “Are you ready to go? Daddy and Liam are in the car.” He shook his head. I picked him up and watched as the staff watched us walk out of that place. I wonder what they thought. Did they just think, “Oh so sad, but life goes on?” Do you think they took into consideration how broken and shattered our lives would now be? How nothing will ever be alright or the same again? We rode home in silence. Your car seat was already taken out of the car. I sat where you should have been sitting. The sun was rising. My phone kept ringing. Your Mr. Sparkly Eyes. “When can I come over?” I read his texts. “I’m so sorry. I don’t have words. I need your address.” I don’t think I responded. I got home and pounded about 10 sleeping pills and don’t remember much except for hearing Sparkly leave our house. I called him. “You were sleeping. I didn’t want to wake you.” “No. I’m up. Come back. Where is Ronan? I need him! I need to see him. Is he here?” “Darling, lay back down, I’ll check on you later.” “Fine. Fine. Fine. Everything is fine. I’m laying back down. I need more sleeping pills. Goodbye.” I passed out for much more of the evening. I don’t remember seeing anyone but I know they were around. The only face I wanted to see most was just gone! Just gone, just like that. In the blink of an eye. I have the picture of you. Right before you died. Of you and me. Someday I will post it. I’ve decided that when somebody asks me how you died, I’m going to just come out and say, “Oh, my Ronan was murdered.” I’ll watch as these new strangers become outraged and so angry. Then I’ll say, “He was not only murdered, but he was bullied, beaten and murdered by this asshole called Childhood Cancer. I wonder if the truth about childhood cancer, really came out, how people would really feel. Nope. It’s not just a story about cute bald-headed kids wearing sweet looking hats and being happy heroes. The truth is these kids are getting beaten up, bullied, and murdered over and over, every single day. Maybe if the truth was shown, more people would be so outraged, that they couldn’t look away any longer. Something has to change. You will never hear me say the words, “Ronan is an angel now.” That makes it seems like it is o.k. and it is so no o.k. My child should not have to be an angel. He wasn’t ever one in the life that he lived here, so why would he be one anywhere else? That’s not the Ro I knew for almost 5 years if you count the 9 months I carried him in my stomach. He wasn’t even an angel then. He was my extra spicy monkey who made his own rules and listened to no one. You know what else I remembered today, Ronan. Such a little detail but I remembered that I had a french manicure on my nails the day you died. I have not worn one since and I will never wear one again. I hate french manicures and I know you did too. You always wanted the brightest most sparkly colors on your toes. That’s what I’ve been wearing for you. It makes me smile.

I’m going to go now, baby doll. My headache is almost gone and I need to get some sleep. Remind me to tell you about the dream I had the other night. I’m too tired to talk about it now. I’m sorry, Ronan. I’m sorry I couldn’t save you. I miss you. I love you. I hope you are safe. Sweet dreams, love of my life.

xoxo

<;;

Bret Michaels is a Rockstar of his word. Loved seeing this the other day!

Thank You, Bret for continuing to support The Ronan Thompson Foundation. You all can see Bret wearing his Rockstar Ronan bracelet in your Pet Smarts, everywhere. Awareness will change the face of childhood cancer. We are so thankful for the support.

 

When all else fails, go to a concert. Even when all you want to do, is hide under the covers.

Happy 4th of July, Ro baby. This is our second one, without you. Today was o.k. We didn’t put much pressure on making sure we were doing the traditional celebrating of the 4th of July. Traditional seems funny now, so we just kind of make up our own ways to get through the day. We all slept in. Macy is here and I always sleep better when she is around. She’s sleeping in your room which brings me comfort as well. We all slept in. We woke up and decided to go for Mexican food. It was a rainy day here which you know I loved. It made me smile. I had a little break down 10 second cry fest when I found myself in your closet, with Macy, grabbing sweatshirts as I keep most of my winter things, in with yours. We were smushed together, in your closet, with your little clothes, hats, and shoes surrounding us. “I can’t be in here,” Macy said as tears started to form. I just told her I knew and we grabbed our things and got out of your closet as fast as we could. Your brothers and daddy were waiting for us so there wasn’t much time to let the tears pour that were wanting to so badly. I had to pull it together for everyone despite the fact that all I really wanted to do was curl up in a ball in your closet and not come out for the entire day. I didn’t. We went for Mexican food like we had planned. After that we came home and Macy and I ran out the the grocery store. I know you know how much I used to love to cook. It was one of my favorite things to do. I don’t do it very much anymore. It’s hard for me to concentrate on things and cooking for everyone, while you are dead, makes me sick to my stomach. It’s one of the mental blocks in my head that I just can’t seem to get past. I was determined today to make your daddy and brothers a good meal. I grabbed my Julia Child cookbook and jotted down a recipe. I spent the rest of the afternoon/evening cooking away in our kitchen while I listened to the sounds of Macy’s giggles, Quinn begging to help, while your daddy and Liam played some video game. Your daddy kept saying how good the house smelled but I can honestly tell you, I couldn’t smell a thing. I felt like I was on autopilot mode as all I wanted to do was make it through cooking dinner, without burning a thing due to my brain that forgets to pay attention a lot. Mission complete and all I heard was how good everything turned out. It was bittersweet to spend the day cooking away without you sitting on the counter, to help me the way you used to love to do. I miss that so much.

I started that post a few days ago, little man. Much has happened since then. I had a board meeting. I spent much of the day, cooking away for it as we had it at our house where much of our meetings, take place. Macy is still here. She helped me in the kitchen all day. The meeting was great and really productive. A lot of decisions were made in regards to the event we are having for your on September 29th here at The W Hotel in Scottsdale. I think it is going to be really, really great. Our lovie, Charisma, offered to fly in and host the event for us as we wanted to have a celebrity host. I was so relieved when she offered to do this for me. It means so much to me having her be a part of this just for so many reasons but the biggest one of all being that she really knew you, loved you and continues to be such a strong support system in my life. I am excited about the plans we are putting in place. More on that as we figure them out. I promise to keep you all in the loop:)

Yesterday was a hard day for some reason. I dropped your brothers off at basketball camp and ran some errands with Macy. We stopped at Rita’s for a bit to talk about some things with her and see that little Dragon of hers as well. I played Star Wars with him on the floor and he made me be Master Yoda. You would have liked it. It was too much for Macy to watch so she had to leave the room. Little Dragon went down for a nap and I joined Macy and Rita in the livingroom. I guess I was being quiet. Rita looked at me and said, “Are you going to cry?” I put on my tough face and said, “No. I’m just thinking.” Lies. I had been on the verge of a massive tear fest all day long. We left Rita’s as we had some things to do before our Foster the People concert. I was driving in the car with Macy and it was pretty quiet. We were listening to some C.D. that I had playing. One of my favorite songs came on, “Silver Coin,” by Angus and Julia Stone. Macy said how she had never heard the song before. I told her how it was one of my favorites. We listened and soon my face was covered in the wet, salty tears that I am so familiar with as they sometimes never seems to stop. She looked over at me, didn’t say a word, and just started rubbing my shoulders and held my hand. I knew she was crying too. We pulled over in the Biltmore parking lot and just sat for a good 45 minutes, not talking much at first, but just crying for a long time. We stayed that way until Rita got to our car as we were supposed to meet her for a little girly time, before the concert. Rita looked at me in the car and said, “Why do you always say you are o.k., when you are not?” I just told her, “Because I am never o.k.” The tears continued to fall and the plans that we had, were changed. A new plan of some girly time on a couch at a restaurant happened instead where we sat and talked, laughed, and cried. I was not feeling like going to the concert at all. Rita told me that I didn’t have to go. I told her yes I did. Because if I didn’t go, I would die. She said she knew. She got my metaphor.

We parted ways and all met up at our house. A group of us went to the concert. Me, your Daddy, Macy, Rita, Danielle, Dave, Stacy, Kenny, Carolyn, and Cory. My sadness was still heavy but I was able to let go of it during the night for a bit to get lost in the world that I love and adore so much. Music. My escape. My heart. My happiness. It destroys me that you never got to hear Foster the People as their C.D. came out after you passed away. I know you would have been just as obsessed with them, as I am. I spent the rest of the evening singing and dancing my heart out with the friends that I am so lucky to have. It was just what I needed lift the heaviness that I carry around with me 24 hours a day. It’s morning now. I am hoping today will be a little less sad. I am thinking I see some inferno hiking happening. Macy has been begging to be introduced to it. Today will be a good day as you know that exercise is one of the things that makes me feel better.

I love you, little man. I hope you are safe. I miss you so very much. I’m so very sorry.

xoxo

An inferno church twice in one day and still not eating Chick-fil-a!

Ronan. Geez. My little blog post seemed to cause quite an uproar. Am I surprised? Not really. I know that not everyone is going to choose my cause, which is childhood cancer, as their cause. But you know what? I can guarantee you, the people that do not care about this cause, have never been on the floor of a children’s oncology unit. If they have been, I can guarantee you this is something that they would support. If you don’t support childhood cancer, then please stop reading my blog. Why did the chick-fil-a thing piss me off so much? It has nothing to do with the Christian part of this. You all missed my point on that one. Chick-fil-a could have been run by a bunch of Atheists and I would have still been just as pissed. It has to do with the amount of money that was spent could have done some actual good in the world. How about all the starving kids in Africa? How about how they have no clean water over there, to drink? How about helping out with something like putting in wells for them, because clean water should be a right for EVERYONE. How about all the orphans in china who are born with medical needs? I know there are more problems in the world, other than childhood cancer. All I was saying, was I wish people would stop being so ignorant and donate to causes that actually matter. And no, Ryan from Chucktown, Wa. I will not be back to Chick-fil-a when as you put it, “one of my kids starts crying about wanting it.” Fuck off. My kids have a dead brother to cry about, tears will not be shed over some fucking chicken. Unfortunately, they know what the real problems of the world feel like.

Ronan. So yesterday was a day spent with your brothers. Quinn was still not feeling 100% so we stayed home much of the afternoon. I called to get him a follow-up with the Neurologist just to play it safe. I took your brothers swimming for most of the day. Those two are so intertwined now it’s if they are the same person. This is good and bad. Summer is hard because it is the town of them, constantly together which means a lot of arguing, fighting, but love as well. I was swimming with them yesterday and they would not get off of each other. They were kind of play fighting but kind of real fighting, too. I was doing my best to let them do their thing, without letting things go to far. At one point I just looked at them and said, “Geez. Where is Ronan when we need him. You guys’ really needed him to keep you from doing this, 24 hours a day.” It is so true. You broke up our family dynamic so much that you made everything perfect, special and just the way it should have always been. You were the in between fun that your brothers so needed and so still need. They were always so happy to be entertaining you, that it seems like a lot less fighting between the two of them, occurred. This always makes me sad to sit back and watch or think about. I know the everyday normal of our days, would have been so different with you here. I imagine them a lot. How your little life, changed our family so much, for the better and not having you here now makes everything feel and seem so wrong. Even a simple day at the pool.

After a day with your brothers, your daddy got home and I told him that I really needed to get out of the house and go hiking. He was fine with that so off I went. I hiked up Camelback as fast as I could. I found myself trying to fight off the heat and wanting to stop. I heard myself in my head saying, “You don’t get to stop, Ronan is at the top.” Over and over again. I didn’t stop. It did not matter that it was over 100 degrees outside. I passed people left and right, pushing myself further and further into my inferno of Hell. I sat at the top for a long time. I stayed at my church, for over an hour. I decorated a tree with your bracelets. I watched the sun start to finally dip down below the mountains surrounding me. I watched them and felt myself filled with a peacefulness that I seem to find in that little church of mine. It was a good hour of just sitting and being with the world that I don’t do enough of. I got up and headed down. I got a text from Rita saying she needed to exercise and was thinking about going night hiking. Holla!!! Count me in! I told her I had just come off of Camelback, but I would climb another mountain with her. She said, “Haven’t you already hiked today? I can’t let you do that.” I told her nonsense and to hurry her ass up. I met her at my other favorite mountain for some badass, totally dangerous night hiking. Well, it might have been had we not both had headlamps on. I think that kind of took the danger out of it. It was super peaceful and serene. I was proud of myself for going to my church twice in one day! I think I really needed it yesterday.

It’s early morning now. I have much to do in the name of cancer fighting business. But first and foremost, I can hear your brothers starting to stir, so breakfast must be made. I miss you. I love you. I hope you are safe.

xoxo

Fuck You Chick-Fil-A’s. I know where my kids will NEVER be eating again.

 

 

 

http://www.huffingtonpost.com/2012/07/02/chick-fil-a-anti-gay-group-donations-_n_1644609.html

Wow. FIVE million dollars to Anti-Gay groups? Are you even fucking kidding me right now? I rarely let my kids eat fast food, but when they want something, I take them here. Yeah. Not anymore, you bunch of fucking fucktards! Do you know how much GOOD that could have done in the childhood cancer world? A fuckton of A LOT. Good thing you decided to fund such an amazing cause though, because kids DIE everyday from the disease of Gaydom. This makes me sick to my stomach. How are people so fucking ignorant? I say down with Chick-Fil-A. I’m going to start up a Fuck You Chick-Fil-A fund. They should be embarrassed, ashamed and shut down. I have no tolerance of this kind of hatred. You don’t like the gay community? That makes you a fucktard. Here’s an idea, why don’t you start minding your own fucking business and go find a real problem to get upset about! NEVER EATING HERE AGAIN!!! I may just go and picket outside of your fucking fast food joint, too!!!!

Ronan. I’m sorry due to fucking ignorant people everywhere, that the real problems of the world like kids dying of cancer, get overlooked. This world is ridiculous. On a side note, Anderson Cooper is my hero. I love him and his courage to be true to he really is in this world, while having to deal with the hatred of evil people everywhere. He is brave, heroic and someone I will teach your brothers to look up to. I already had the “We are never eating a chick-fil-a’s again talk with them. They are fine with it. Quinn responded with, “Why do so many people care about people who aren’t doing anything wrong?” Good question, Quinny. Good question.

Love you, Ro. I hope you are safe.

xoxo

A never normal world

 

 

 

Ronan. Normal will never be my life again. Quinn woke up this morning. Throwing up. Headache. I look at your daddy. He knows what I am thinking. I send him a text later in the day. “Quinn is still not feeling well. I’m sick to my stomach over this.”  Of course it’s because he has a brain tumor or something. It cannot just be he has a little bug. Your daddy tells me to get him into our Doctor tomorrow. To call the Barrows neurologist that we took him to about 6 months ago for this very same thing. A normal flu will never be my thought process again. My stomach will now always drop over the little sign, symptom, or clue. I will always panic on the inside while remaining calm on the outside as I don’t want to scare your brother. That brother of yours with the worry brain the size of china. That brother of yours who now asks if I am going to die over something like a sinus infection. That brother of yours who looks so much like you, but with grey eyes and darker features. That brother of yours who misses you so much that it brings tears to my eyes when I watch him and the way he is trying to find his way, without you. We are all so broken. Sometimes we do things like all sleep in our room because we don’t want to be apart. So, Quinn sleeps in between your daddy and I, and Liam is happy as a clam on the floor. We did this last night. We do this a lot. We spent so much time apart that it’s almost as if we don’t know how to come back together. Nights like last night make everyone feel a little safer I guess. It still does not make things better. I am still always sad to wake up and not find you here, with us. That will never change.

I went inferno hiking today. 111 degrees it was. I don’t care. I didn’t notice the heat. I took my little friend, Kassie with me. My inferno hiking partner in crime. She’s slightly addicted and I think I might be the one to blame. She is always hiking without me while I am away. It was nice to have her with me today. Sometimes the company is nice as my thoughts like the break from the beating myself up over and over again. After our hike, I came home and took care of Quinn. I also tackled the mounds of laundry and chores that needed to be done around the house. I have a list of about 100 things that I need to do foundation wise and I knew that I would not be able to start them, until the chaos that had invaded our house due to being gone, was handled. Mission complete. I can start on your things tomorrow as my head feels a little more clear and after I take Quinn to the doctor.

Am I being paranoid? Probably. Do I have the luxury of not being anymore? No way. Do I wish I did. Of course. But it will never be this way again. I have your Macy flying in on Tuesday. She will stay with us for about a week. She knows how hard the holidays are for us. She is so good about coming to the rescue when we need her most. We are going to Foster the People on Friday night which I am so excited about. Assuming everything is alright with Quinn. He asked me if he could still go to basketball camp tomorrow. I told him no. I have not told him yet that we will be going to the doctor. Fun stuff. I may need to end this post tonight now. It’s been a long day and I am tired. I wanted to leave you all with something that another Neuroblastoma dad I know wrote. He has a son, Will, who Dr. Sholler has treated for a long time. Will is doing great and is basically living with this disease, all thanks to Dr. Sholler. Please check out his page if you get a second.

http://www.willlacey.com/2012/06/oblivious.html

This is from Will’s dad, below. It makes me sad, frustrated, and confused. Why don’t more people care about these kids? Why is the funding for these kids so broken and overlooked? Who the fuck is in charge because they are doing a shitty job. Is anyone in charge? I pay taxes. A lot of them. I would much rather pay for these kids to have better chances then for some stupid war that is solving nothing. You are telling me we can waste money, to put a man on the fucking moon when thousands of kids are dying every year from the number one disease killer in America. WTF is going on? This happened to me. This can happen to anyone. When are we, as a country, going to stop looking the other way? When it happens to us? Not acceptable. If somebody would have dealt with this, like it need to be dealt with, my Ronan may still be here. The fact that I have to live without him because kids don’t get cancer, therefore, they don’t get the funding for research is the biggest crock of shit I have ever heard in my life. I’m stopping now. I’ll let Will’s dad, take it from here.

Despite what you may think from following along here on this website I do not – in fact – share everything about our life or our family.  There are challenges we face and obstacles to overcome that do not have a home here.  What I do share is about parenting a child with cancer and the extraordinary number of challenges that prevent great doctors from practicing life saving medicine and the absurdity that it falls to the parents of kids with cancer to fund trials.

The system to fund research in this country is broken.

It is broken because it is ruled by grotesque cronyism masked as a peer reviewed grant process that continues to fund the same old research over and over again.  And this is all set against a backdrop of dwindling resources combined with societal apathy about the reality of childhood cancer.

The reality is hard to look at.

It is reinforced by the media’s incorrect portrayal of childhood cancer as a “heroic” struggle involving smiling bald kids enduring harsh treatments and then going on to live normal lives. This is what we need to see – what we want to believe – because the truth is to hard to reconcile.

The truth is that the kids who aren’t killed go on to live anything but ordinary lives and their families – like mine – are broken.

The truth is that kids are killed – over 25,000 over the last decade in the US alone.  Their death and the torture chamber that their families live within is the reality. 

These kids die painfully – often slowly – as their parents sit helpless as they watch their bodies become disfigured and waste away.  They do all they can to try and comfort their child and watch the pain break through the impossibly high doses of medication while their souls are being eviscerated.  

A ragged bloody wound is all that remains of their once whole heart.  
A haunted minefield is all that remains of their memories of their child’s last days, weeks and months.

And still the funding does not come.  

And as these families are pulled down to the bottoms of grief and despair another family is unexpectedly thrust into the machinery that will one day churn them out the other end a broken remnant of what was once a whole entity.  

And on and on it goes as the world remains oblivious.

 

Goodnight, Ronan. I miss you. I love you. I hope you are safe. Goodnight all you lovies of this blog reading world. I just wanted to take a second to say thank you to any of you that donated to my Rissy’s mission trip. She just texted me to tell me that they are now 500 dollars OVER the amount that they were trying to raise. That makes my heart happy. She is leaving tomorrow. Please keep her in your thoughts, prayers, or whatever else it is, that you do. I will be praying to my Ronan for her. Love you all. Sweet dreams.

xoxo