Turns out Maybelline Great Lash Mascara isn’t so great when you’re a bloody mess

tumblr_mnzdxkF5q51ralo3eo1_500

Ronan. Finally, I can sit down and have some time with you. I hate that I haven’t been able to write, let alone breathe lately. I’ve been so unbelievably busy that I swear by the time my head hits the pillow at night, I am out like a light. Such a change from how things used to be. I miss my insomnia nights where I used to stay up and write to you. Poppy has been keeping me incredibly busy. I forgot how time-consuming this whole breast-feeding thing is and your little sister has such an appetite that I swear I am feeding her around the clock. I know it’s what’s best for her and I love spending the time with her doing it, but it does leave little time to get things done around here. I’m just trying to soak it all in still because I know how quickly this time passes. Things are still going amazing with that little sister of yours. She is still a happy girl and is sleeping at night like a champ. None of us can get enough of her. I won’t let her out of my sight and she goes everywhere with me. She even went to her first board meeting the other night and didn’t make a peep as everyone passed her around to love on her. The amount of love for this baby girl blows me away. It’s like she’s getting double the dose from everyone due to the impact you’ve had on all of us, Ronan. She is so lucky to be surrounded by the most amazing souls. I can only imagine what an amazing little human being this will make her. Tomorrow, she will already be 2 months. It has flown by so fast and she is changing so much. She’s now doing really cute things like smiling and cooing at us all. Macy swears she can understand everything we are saying and she trying to have a conversation back with us. The way her eyes look at all of us while we are talking to her makes me think she is right. This Poppy girl already seems to know so much.

Your brothers are out of school. Normally, we would be in San Diego by now but this year we decided to take a little break. Your daddy was burnt out on it and I don’t blame him. One more year of going to the same spot where we always took you, without you was going to be too much for me to handle. I almost had a nervous breakdown last year. Too many almost 4-year-old blond-haired boys running about. Too many swimming pools without you in it. Too much of everything I pretty much never care to see again. It wasn’t therapeutic and it wasn’t healthy for me to be there last year and I have no interest in returning back to a place that I so desperately want to be the same, but it never will be the same again. So we are still in AZ. Your brothers have started a basketball camp which they love but it’s only for a couple of hours a day. The rest of our days have mostly been spent just hanging out having play dates, swimming, and they have helped me with a lot of things around here. We have our little, Rachel, in from NYC. I love having her here so much. We all do. Just another one of those amazing things to come from this blog and from you. She is our family and I love seeing her with your Poppy sister. Now, if I could only get her to move in and be our nanny;) Something tells me that would not be enough to keep our little smarty pants I just graduated NYC and now am working at Columbia University entertained. I am so proud of her and all she is doing. Macy calls her Saint Rachel because she is that amazing at 22. I feel so blessed to have come across this soul who is now a part of our family. We are all going to miss her so much when she leaves. Hopefully she will come out to Washington and visit us when we are there this summer.

That is what we are doing this summer. I am taking your brothers and sister to Nana and Papa’s house. It’s all your brothers have been talking about for months. I’ve been having to listening to them begging to go out earlier, but we had some things to take care of around here first. Believe me, I am just as excited as they are. I miss my parents and my childhood house where I always feel so safe and sound at, even under the shittiest of circumstances. It will be nice to have help with your sister and brothers. Washington is my place of peacefulness where I feel like I can actually breathe for a little bit. And no almost 4 year old blond boys exist. It will be nice to take a little break from the rat race that I often get caught up in here. I have lots of plans that mostly consist of no plans at all, besides spending a ton of time with your brothers and Papa Jim doing our favorite things like fishing, hiking, playing hide and seek until dark, and enjoying all the beauty the pacific northwest has to offer this time of year, including hopefully many days of rain. Please, please, please Washington rain gods, work your magic. I have been missing our rain so much, Ro.

We had a board meeting the other night. We have so many things in the works and so much coming up. A few top secret things that involve a kick ass rockstar. We still have not heard back on the petition to light the Whitehouse Gold for September. I’m not sure if that’s a good thing or a bad thing. I am still hoping for the best. After the board meeting, I told your daddy I would have Fernanda drive me home because I needed to spend some time with her. We had a lot to talk about and as always, it circled back around to you. I know you know how I am. I don’t let my guard down in front of many people. I much prefer to do all of my crying alone, and don’t often do I do it in front of others. There are only a handful of people who I am comfortable enough with to let everything out. I’ve never had a guard up with Fernanda which is why after our little pow wow, I could barely get my ass back into our house because I was seriously blinded by my tears and the fucking cheap ass mascara I wore that day. Remind me never to wear a different brand of mascara than I normally do. I came into the house, my eyes were black and stinging so badly from the mascara running in them, that I had your daddy in a complete panic. I ran to the bathroom to take out my contacts and wash my face while your daddy hovered over me begging me to tell him what was wrong. It’s the same thing it always is, Ronan. You are dead, I would give anything to have you back, I sometimes still don’t want to be here, because I just want to be with you, where are you? who is taking care of you? and why can’t it be me? Everything in my body still yearns for you, screams for you, begs for you in the worst way. Sometimes your daddy and I sit and bed at night and whisper secrets.

“Do you ever think Poppy has parts of Ronan?” he asked me the other night.
I quietly said, “Yes.”

“Me, too.” he said. “Is that wrong?”

I just told him through my tears, “If it gets us through this, does it really matter?”

I don’t think that it does, Ronan. She is parts of you without a doubt. Just like Liam and Quinn are, too. Many days I catch glimpses of you through your brothers and it helps me in a way. I see you in Quinn’s still sometimes with his mischievous ways. I see you in Liam’s strength and the way he carries himself so proud, like you always did. Poppy feels like you. She reminds me of you. I know you sent her to me to give me a little piece of you back. And some days I think you sent her to me to give me a lot of you back. I don’t care how whack-a-doodle that sounds. Thinking that way helps me to survive this insanely painful life without you here. I can’t tell your baby pictures apart. I can’t get over that she has the same little secret dimple that you had only when you smiled in the same exact spot. It gives me goosebumps and butterflies at the same time. I like living in this Poppyland. It feels o.k. again. Some days it even feels good.

Alright little man. I miss you so much. I miss you. I love you. I hope you are safe. Sweet dreams baby doll. G’nite.

xoxo

P.S. Please keep our Kassie safe while she is away on her amazing African adventure. I know she took you with her. Thanks, baby.

P.P.S. Does anybody know anybody high up at our local cable company Cox Communications?? Woody went to tour one of our Ronanld McDonald Houses here today because we are looking to help them with some of their wish list items. We would like to make some things better for the families that have to stay there. Turns out, they don’t have the place wired for cable because Cox wants to charge them full price and won’t give them a discount. Seriously? That makes me so mad. I love it when people try to make money off of people who are going through a hard time. It’s a freaking non-profit, Cox Communications. Give me a break. I might like to write them a little letter or speak to somebody who is higher up over there. Thanks, lovies for anything you can do.

xx

This slideshow requires JavaScript.

A death day and an almost birthday

BJNoQSeCIAE7w-4.jpg-large

Ronan. We made it through your death day the best we could. I didn’t sleep much the night before and I even had my alarm set to go off during the time that you passed away, just so I could be awake. I didn’t need the alarm because your Poppy sister woke me up almost exactly at the time you left this earth; because she wanted to eat. Of course she did, right Ro? Poppy knows what’s up. I did a lot of my crying the day before you passed away, a lot of it the night before, and still a lot of it on the awful day itself. I picked up the phone on your death day for the one person that promised to call and the one person that I would pick up for. Your Sparkly. I started crying as soon as I saw his name pop up on my screen. I let him do what he does best which is say a few things to help me get through the day. I didn’t say much, just quietly cried instead and told him I loved him. Not many words were needed by either of us.

We spent a quiet day in Sedona together by the river and in the woods. We had a little lunch and an early dinner. At one point, your Daddy and Liam ran into the store while Quinn, Poppy and I waited in the car. Quinn was changing the music in my car and a mixed C.D. that I had made, came on. The first song being, “Ronan.” He seemed so excited about it. “Oh! I haven’t heard this song in forever!” I just smiled at him and told myself to let it play while I sat in the back seat next to Poppy. It only took about 5 seconds of listening to that sweet voice and those oh so powerful lyrics before I lost it completely. Full on could not breathe, sobbing, as I wiped tear after tear away. I am still amazed at how Taylor did the most beautiful job at capturing my grief in such a way that it leaves me breathless every time I listen to your song. I love it so much, but it is so hard for me to get through. Quinn just watched as I cried, bent his head down, and held my hand. I don’t know if I’ll ever be able to get through that song without crying. I could see every single word play out in my head like a real life movie except it’s not a movie, it’s my life and it never gets any easier.

Once we were back to our hotel and the sun was setting, we all headed down to the creek with our 6 purple balloons and a Sharpie pen. We all took turns writing on our balloons. I’m sure it was quite the sight the 5 of us, all huddled together, writing our thoughts to you. At first Quinn only wrote a couple of things. It went a little something like this:

“I miss you, Ronan. I love you to the moon and back.”

But then he said, “Wait! I need to write more!” It ended up being a novel for as much of a novel that would fit on one purple balloon. He said some other things that I tried to read out loud, but I started choking on my tears as I read his words.

“I wish you were here. I was really looking forward to watching you grow up and play baseball and basketball. I miss you.”

Liam’s words went a little something like this:

“Ro Ro. I miss you. I am so proud of you. You are so strong. I love you.”

Your daddy wrote his words, I wrote mine, and Poppy wrote hers;). We went down to where there was a clearing in the sky from the trees and let our balloons go. Only Liam’s made it out of the trees. The rest of ours got caught up in the branches above. Liam was jumping up and down in excitement as if it were a competition. It made us all laugh through our tears. I’m sure you giggled, too.

We had to come back from Sedona on Friday because your brothers had a basketball tournament to play in on Saturday. It was the playoffs for the YMCA team that your Daddy has been coaching them on. If they ended up winning, they would play again that night for a chance to go to the finals and play next week at the Phoenix Suns arena. They won the first game. After it was over, we ended up taking your brothers and 3 of their friends/teammates out for pizza. It’s these happy moments that I see through your brothers eyes that keep me going. We all sat there together at a table full of boys and we gave them a pep talk about their upcoming game. There were a lot of laughs and the talking was non stop. I am blown away at your brothers and so thankful for what respectful boys they are. Not only them, Ronan but the little group of friends they have made as well. The table was full of please’s, thank you’s, Yes, Mr. Thompson, No, Mrs. Thompson, all coming from a group of 9 year olds. At one point your daddy looked at me and said, “How much would Ronan have loved all the boys’ friends?” So much, Ronan. They are the nicest boys, the hardest little workers, and just so respectful. I know you would have been in the middle of them, causing your little mischief and they would have eaten it up with a spoon.

Your brothers won both games today, Ronan. I looked at them before their last game and said, “Do this for Ro,” as I gave them both knuckles. They both smiled at me and said that they would. I sat back tonight and watched as your brothers played their hearts out and I know it was all for you. Liam had 19 of our 22 points. They were both on fire and so determined to play in the finals. I love watching them play this game so much. I love watching your Daddy coach them. He is amazing at he and is the reason they have become such good little players. He works so hard with them to make them the best players that they can be. It makes me so proud of all 3 of them. I remember how when you were so little and so freakishly coordinated at such a young age how your daddy would talk about how he couldn’t wait to coach your teams. You would have been such an amazing athlete. Our mini Pat Tillman as we used to say. I’m sorry buddy. So very sorry.

It’s late. As soon as your brothers game ended we headed home to get our things so we could head to Tucson. We didn’t want to spend your birthday tomorrow sitting around our house being sad. So, we are taking your brothers to a resort that has one of the biggest water slides in all of Arizona. We will let them run around and be crazy for you tomorrow. Tomorrow we will all do our best to celebrate you by doing something you would have loved. Your brothers are very excited about doing this for you. I will do my best to put on my bravest smile to get through the day. I have a feeling your little sister will help me out. She seems to have a knack for this already. She is already helping me so much just by being here and making me feel like I have a tiny piece of you back. Thank you so much for her, Ro.

Happy almost 6th birthday my spicy little monkey. I love you so much. I miss you. I hope you are safe. Sweet dreams.

xoxo

P.S. Happy Mother’s Day to all of you mum’s out there. I hope you have a beautiful day tomorrow and I know you all know how lucky you are. Please don’t ever forget that.

To all of my mom’s out there who are in my shoes…I know tomorrow will be rough and for that, I am so sorry. I wish you a day full of gentleness to just get through the day. Just getting through the day is something to be proud of. Here is a little lesson I have learned after going through something like this. Days like tomorrow will never get any easier. Ever. So on a day like Mother’s Day when it is supposed to be all about us, take this one day and stop trying to please other people. Take this one day and acknowledge your grief, don’t apologize for it, and do what it is that would make you the most happy on this day. For me, tomorrow isn’t about me and that makes me happy. I would much rather just spend the day celebrating my Ronan through the eyes of Liam, Quinn, and Poppy with my amazing husband. And you know what?? If tomorrow comes and I decide that I can’t get out of bed and do a thing, I know I am surrounded by the people who love me most in the world and they will be o.k. with that. I have learned that surrounding yourself with people who have no expectations of you, is the best way to get through these holidays that are so bloody hard now.

This slideshow requires JavaScript.

That beautiful day your sister was born

tumblr_ml1ir5XYlg1rr3wooo1_500

Ronan. I know I’m supposed to sleep when your Poppy sister sleeps, but even early in these morning hours, I just can’t seem to do so. It doesn’t matter the lack of sleep I’m getting due to breast-feeding her, holding her, or obsessively watching her sleep because I’m scared she’s just going to up and stop breathing. I think at this point I’m just running off adrenalin and that’s o.k. Sleep stopped being my friend a long time ago.

So, do you want to hear the story about the day your sister was born? I know you already know it, but I’ll recap it for those who don’t. The last few weeks of my pregnancy I was miserable. Miserable in a way that I found myself begging day after day for your sister to finally get here. You know I’m not a good pregnant person at all and those last few weeks, I was beyond done both mentally and physically. Dr. Schwartz was well aware of this too which is why I got her to agree to strip my membranes to try to jump start my labor the same way she did with me for you. I went into her office on a Tuesday and she did this for me to try to get things rolling. It didn’t work. I went back to her on Thursday and once again she stripped away and I left her office hoping that your baby sister would make her entrance into the world soon; just like the way you did after I had this done. I ended up going to the hospital due to having some bleeding and pretty bad contractions had started up as well. I thought it was going to be go time, but as the night went on, the contractions stopped. I had to stay the night at the hospital so they could monitor me, but I was released the very next day. As you can imagine, I was out of my mind upset. I may be a patient person about most things in life, but the end of a pregnancy is not one of them. I also had myself convinced that Poppy was for sure going to be born dead or was never going to come out at all because clearly I had made her up in my deranged head. Once home I pretty much stayed in bed the entire weekend, not wanting to talk to or see anyone. If there was ever a time that I was “depressed,” in my life, you could say the last few week of pregnancy were it for me.

On Sunday night around 10 p.m. just as your daddy came to bed to go to sleep, I was huffing and puffing about how miserable I was and how I hated the world so I got up to do my late night laundry that I have become accustomed to. Just as I was cursing the pregnancy gods from above, I noticed a little drip, drip, drip running down my legs. I walked down the hallway and the puddle continued to slowly trickle out of me. I went in to our bedroom and said to your daddy, “I think my water just broke.” He jumped out of bed all panicked and told me to grab my stuff so we could rush to the hospital. I told him, “No way. I have to shower first. This could take forever and I’m not bringing Poppy into this world until I shower and shave my legs.” I calmly got showered, dressed, and off to the hospital we went. We were admitted right away and Dr. Schwartz was called. She ordered the hospital to start pitocin for me to get things to progress and little faster as I was still only about 4 cm dilated. By this time it was about midnight and I geared up for the night while your daddy quietly slept away on the couch. My contractions started to get pretty bad and the epidural could not have come soon enough. I could not get a hold of Dr. JoRo who was back up in Sedona as she had been with me in the hospital all of Thursday night but went home after I was released. My doula, your daddy, was just not cutting it as I screamed at him about the pain/having to feed myself ice chips because he was so tired that he could not stay up. Luckily, I had a really great nurse who helped me through everything while your daddy got his beauty sleep to prepare for the big day. Apparently labor is hard work when you are a dude 😉 I was really proud of the self control I contained as it took everything I had not to throw ice chips at your Daddy’s head while he slept away and I sat there cursing away from the pain of the contractions that were getting stronger and closer together.

It was around 5:15 a.m. that I started to push your sister out. I had your blanket on my chest and did my best to remain calm as I said your name over and over in my head. 3 pushes was all it took and your baby sister was plopped in my arms immediately. I was overcome with so many emotions that is was almost as if I couldn’t feel a thing. I just remember staring at her and whispering, “Thank you, Ronan,” in her little ear. She looked up at me with her big wide eyes that I can tell are already full of so much wisdom. Your sister was born at 5:35 a.m., 6 lbs 11 oz, tons of dark hair and oh so perfect in every way. She had one little cry as she entered this world but that is pretty much the only peep she has made. I’ve never seen a more calm or peaceful baby in my life. I spent the next few hours staring at her and in disbelief of how much she looks like you. Your daddy and I cannot get over it. I think I went 48 hours without any sleep at all. My adrenaline was through the roof all I could seem to do was stare at your little sister as I slowly let myself fall in love with her. I needed some time to process everything and needed some time to bond with this new baby girl as you know how bittersweet this is for all of us.

Dr. JoRo arrived at the hospital around 10 a.m. and stayed for much of the day. She left once your brothers arrived to let us have some private time together as a family. It hurt to see your brothers walk through that door without you but it was also such a beautiful moment, too. They were so excited and proud to meet their new baby sister. I think they were also both relieved to see that she was finally here, safe and sound. We kept visitors to a minimum just the way I said we would. I needed everything to be calm and quiet not only for me, but for Poppy as well. As the day went on, I sat and watched out our window as an unexpected rain storm took over the entire valley. It was one that was not predicted but rather it came out of nowhere. I know you are always with me, Ro but this storm on the day your Poppy sister was born just proves it to me even more. It was such an amazing thing to witness like it was our own little secret. You are such a little spicy monkey boy and I spent much of the day smiling as I watched the rain pour down out of nowhere.

Our Mr. Sparkly Eyes came by both days that I was at the hospital. The first day he just popped in to take a peek at his new goddaughter and the second day he came for a little longer to sit with me and check in with me to see how I was doing/handling all of this. He told me how I was such a natural at being a mom. I smiled and told him I knew, that this was the easy part for me. I told him how proud you would be to have him as the godfather of your baby sister and how I knew that you would have picked him and only him for this as he is the only one special enough to do so. He will be the best at watching over your baby sister for me just like the way he helped to watch over you whenever he could do so. I know you would be so happy about this. I am so honored to have him play this role in your sister’s life. It makes all of this that much more special.

We were released from the hospital 24 hours later and it took us this long to decide on your sister’s name. We had originally planned on naming her Ireland Ronan, which I am still so in love with but for some reason, it just didn’t feel right anymore. Your daddy and I went back and fourth about her name, forever. I just could not part with Poppy. I didn’t want it to be a nickname or an afterthought. It had come to mean too much to me to just let it go. Your daddy threw in a few curveballs and suggested some names like Sophia and Alexandria, both of which I love, but this baby has been Poppy since she was 5 weeks in the womb. Nothing else felt right. Your daddy and I sealed the deal with Poppy Ronan with a kiss on the lips and a smile in our hearts. I know her name would be Ronan approved. I think you would have loved it so very much. It makes me smile and it makes me happy. Poppy Ronan Thompson sounds like the sweetest thing ever and it just seems to fit her little face.

We have been home now and are all doing just fine. I didn’t spiral into that postpartum depression like everybody was freaking out about and worrying that I would. I have been a little quiet and have not seen too many people but that is not due to depression. It’s just due to the four of us trying to enjoy our quiet time with your sister and soak this all in. I’ve been staying at home with her and just trying to let myself bond with her the way that I need to. I wondered how this was all going to feel… having a new little life around to take care of. I wondered if that hole in my heart would disappear due to your Poppy sister being born. I have come to find out this is not the case and will never be the case. I feel like my heart has grown and gotten bigger, but the hole there will always remain. Nobody can fill it as it’s not meant to be filled. It is there to remind me every single day of how much I love you, how much I will always love you, and how much this will forever hurt as your absence in this world is the most painful thing that I have ever felt. This hole in my heart will remain there for the rest of my life. The birth of your sister has proven this. If she can’t fix this, it was not meant to be fixed no matter how much love I feel in this life without you here. I will live with this hole in my heart for the rest of my life and I can be o.k. with this. I am learning to be o.k. living like this. It makes me stronger and makes me work harder at everything I do. I will let my pain do great things in this life to make you proud.

Alright my little man. I am going to go. Thank you from the bottom of my heart for your beautiful sister. Thank you for getting her here safe and sound. I promise to be the best mama in the world to her and teach her all about you. I can’t wait to learn from her the things I know you have already taught her. You are the best big brother in the world. We all love and miss you so much. I’m so sorry that you are not here with us. I miss you. I love you. I hope you are safe. Sweet dreams, baby doll.

xoxo

This slideshow requires JavaScript.

Baseball, Brisket and Marriage Equality for all!

150494_471289292943553_358117064_n

Ronan. I think time is standing still. At least that’s how it feels to me. Maybe it’s because I’m having to take things easy now that your Poppy sister is almost here. Maybe it’s grief. Or a combination of both. I remember things feeling this way right after you passed away for the first 6 months or so. It feels like this once again. I wake up, do the things I need to do, but life feels really empty right now. Nothing feels good. I’m exhausted. I can hardly make it through the day and normal things like keeping up on the laundry, dishes, and feeding your sweet brothers, feels really, really hard. I’m sure this mostly has to do with my pregnancy coming to an end but still, it’s mentally wearing me down. Then there is still the issue with your bedroom. Fucking fuck fuck fuck. I can’t believe it really happened and all of your things are out of there, being cleaned, refinished, your clothes are in bins, your stuffed animals in bags. I still am in shock over it all. I never thought I would let that day happen. Your daddy asked what I wanted to do with the clothes in your closet. I made him leave them there. I still like to touch them and smell them, even though they smell nothing like your sweet little scent. I still take whiffs of them whenever I can, hoping to be reminded of a sweet memory of when they were last worn by you.

I saw Dr. Schwartz today. Everything is progressing well, but I seriously feel like this pregnancy is never going to come to an end. I have it in my head that Poppy is just going to stay inside of me forever as I sometimes still do not think she is real. I honestly don’t think I will fully be able to truly absorb what is happening until I have her in my arms. We talked about everything from Cord Blood Banking, postpartum depression to the whooping-cough vaccine she made your daddy get today. She told us that she doesn’t want anybody around Poppy who has not had the T-dap vaccine as she has been seeing babies die from being exposed. Great. Add that to my list of things to worry about. Liam and Quinn had it with their regular immunizations so they are fine. I had to call your Nana to tell her she needed to get hers before she comes out here. Dr. Schwartz is just being extra careful which is good, but it still makes me nervous. Then there is the whole postpartum depression thing. We sat and had a conversation for a good 20 minutes about this. I told her I honestly wasn’t worried about it. I’ve never had it with my other kids and if I am depressed at all, it’s during this pregnancy -the here and now as being pregnant is keeping me from being able to do everything that helps me not to be depressed/consumed by my grief (which is not depression it’s just grief!) Mainly my exercising. Once your Poppy sister is here, I will be able to start to have my outlets again and they won’t consist of me resting in bed, which I fucking HATE, but instead will consist of going out and doing my hikes/runs/anything to get the adrenaline flowing. She talked about anti depressants. I told her how that’s not happening as I had taken them before and I swear they made me suicidal. How they just seemed to pile on more grief because I wasn’t dealing with anything and I was just numb. I agreed to let your daddy watch out for me though but still, I think I know myself pretty well. We’ll see if I’m eating my words in a few weeks and if so, I’ll deal with it my way. I sent Dr. Jo a text about this later today. We had a very long conversation which left me laughing at the way she got so riled up over the mention of medication/and postpartum depression vs just plain grief. I love her passion so much.We talked about our plan because we do have one. It’s the same one we’ve always followed. When things get more heavy for me, I see Dr. Jo on a more frequent basis and I’m always honest with her about everything I am feeling. We work through it the way it works for me. No fucking meds required. We talked about my sadness though all of this and how I will face it head on. She knows that Poppy is not just going to appear and BAM! all my sadness will be gone. She expects me to feel waves of happiness and waves of sadness with all of this. That’s just the way my life is always now. Poppy won’t fix it all. As Dr. Jo said, “You are not having Poppy to replace Ronan. You are having Poppy because you wanted another baby. But you need to be prepared for the people that are going to come out and act like this she is the answer to all of your sadness. People want her to fix everything and to take this all away from you but that’s not the reality of this. You need to let people know that the birth of this baby girl, does not diminish your pain or your grief. That she does not take Ronan’s place in your family. Ronan’s place is Ronan’s place and he will always be there.” That is our reality. That will always be our reality and nothing will change that. Not even your beautiful baby sister. I know she is going to help with our sadness, Ronan. But our sadness won’t disappear and I am o.k. with that. I am learning every day to just live with it.

Your daddy has been the one working in your room. I can’t bring myself to do a thing. Thank you for him. I honestly don’t know what I would do without that amazing daddy of yours. I always knew I was so lucky to have him, but going through something like this really makes me realize it that much more. He truly is unlike any other man on this planet. He has taken such good care of all of us in every way since losing you. I know it’s a big reason our family seems to be doing o.k. To have such a strong loving man to hold us all up, makes all the difference in the world. I can’t imagine where our family would be without your daddy. Every single night he talks to you out loud before he goes to bed. It mostly breaks my heart to listen to his words and I often times pretend like I am sleeping because what he says, usually makes me cry. Sometimes I don’t want to listen to what he is saying, because him telling you good night and how much he misses you, leaves me with a pit in my stomach that I will never get used to. I always appreciate this though even though it is so hard for me to hear. He went to a concert tonight. He’s been going to a lot of these things lately. I always encourage it. I will always be the wife that says, “Please, go. Have fun.” I will never be the wife that bitches or complains that he does these things. He deserves the break. He deserves to blow off some steam. He works so hard and takes such good care of us that I am always supportive of your daddy going out and having some fun. It makes me happy to see him doing these things. He is so ridiculously excited for your sister to be here. I cannot wait to see what it’s like for him to have a baby girl. I know it is just going to melt my heart. What a lucky little girl to have a daddy like him. It will be such a beautiful thing for our family.

I made your brothers dinner tonight. I cooked a really great brisket for Passover and talked to your brothers all about this holiday and what it means. It’s is important to me that they know about all religions, not just one or none. I want to teach them about EVERYTHING. I want them to have an open mind and be educated about it all. It was a fun little bonding time tonight where we talked about everything from sports to religion to marriage equality for all. Yes. I talk to my twins about this. I am proud to say that I do as I cannot believe this is even an issue in this day and age. Don’t we have bigger fish to fry? Why in the world do I care if my neighbor Bob marries Joe down the street? I don’t. People should be allowed to love who they love, end of story. My boys will grow up knowing this. It’s not our job to judge others or tell others what is right or wrong. It’s not hurting my family, affecting my marriage so GEEZ! Can we please just stop all this madness?! KIDS ARE DYING PEOPLE! Left and right kids are dying from a little thing called cancer yet nobody seems up in arms over this. That to me is pure insanity. People need to get a life and focus on what is really important in the world and it is not over who your neighbor, loves and wants to marry. The ignorance around this is shameful and embarrassing and enough is enough. I have 2 things I am really passionate about in life. 1) Childhood Cancer and 2) Equal rights for all. I won’t ever shut up or shy away from those two things. I was lucky enough in life to have parents who taught me to have an open mind at such an early age and who welcomed a very gay, black man into our world who we loved like our family and whom I was taught was no different from us. I will forever be grateful for my parents for this lesson in life. I will forever be grateful for my parents who let a little girl love a man for who he was, not who society defined him as being. I am a better person for this and my twins will be, too. I would have given ANYTHING for Ronan to grow up and be gay. Or straight. Who cares. At least he would have freaking had the chance to grow up and not die from cancer! Seriously. Where are our priorities?

Alright little man. I’m going to get off my soap box for tonight. I miss you. I love you. I hope you are safe. Please keep your Poppy sister safe. It won’t be much longer now. I love you.

xoxo

599816_10151316010422414_1374400381_n

I have a chronic illness and it’s called sadness

tumblr_mipiftJDuk1r0i5hmo1_500

 

 

 

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

 

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.

 

Pediatric palliative care research study. Please read if you are interested/know anybody who is interested.

tumblr_mi25hb3sYk1r3e62yo1_500

 

 

 

 

My Dr. JoRo is conducting a study. Please see the information below. Thanks!

 

 

We are inviting those aged 18 or older to participate in a research study intended to explore the experiences of those who utilized pediatric palliative care for their child before and during his or her death. The purpose of this study is to determine the individual, familial, and societal effects of this experience and to improve standards of palliative care for families of dying children. Another purpose is to gather information about which attitudes and actions parents found helpful to them, and which ones they found unhelpful or harmful. Our goal is to improve a model of compassionate caregiving and intervention that fosters resiliency at every level. Our team consists of an experienced researcher (Joanne Cacciatore, PhD, FT), a doctoral student (Kara Thieleman, MSW), and a master’s level social work student (Angela Lieber) from Arizona State University. If you decide to participate, one of these three individuals will arrange an interview with you. Interviews will be recorded and transcribed. Interviews may last between an hour to two hours. Your participation in this study is voluntary and your identity will remain anonymous. If you choose not to participate or to withdraw from the study at any time, there will be no penalty or loss of benefit. Participants will be provided with a list of bereavement resources and we will gladly provide you a copy of the final paper upon completion.

Please contact Dr. Joanne Cacciatore-  jcaccia@me.com – if you are interested in being interviewed for this study.

Yesterday, I ended Valentine’s Day just as I should have. By barfing all over myself in the car.

tumblr_mi7qv5zMmp1rr9n46o1_500

Ronan. I am a high functioning sad person. At least that is what I told my agent, Nena today when she texted me to ask how I was doing. She responded with, “High functioning sad… Boom! Keep writing!” That made me laugh. I also love that my agent checked in on me and she knows with me she is never going to get the easy answer which is, “I’m doing fine! How are you?” She knows with me I will always bluntly tell her how I really am doing. Today, I am sad but as I said before I am a high functioning person who is sad. I am not a sad person who stays in bed all day. Not that there is anything wrong with that, but for me, if I stay in bed, I die. I know this. I am a sad person who makes a choice not to stay in bed and die. I choose to wear my lip gloss and go on about my day, the best I can. Even if that means I only make it to the grocery store and Target to take care of the things we need around the house. To me, even those days are victories.

Today was indeed a day of accomplishments. I’ve slowly started to get some things ready for Poppy. I have had a hard time, preparing for Poppy at all. I don’t have a nursery done. I don’t even have a room for her. I put the kabash on all of that for fear of jinxing myself. I was thinking that I was crazy, but come to find out, this is the way a lot of my jewish friends do things too! Many of them don’t allow anything in the house until after the arrival of the baby. So I’m not crazy at all! I’ve just decided to take the jewish route on all of this. My friend, Sarah Y asked this of me in the very beginning of my pregnancy. For me, it makes sense and I was happy to follow her advice. Having everything ready for Poppy before she gets here hasn’t sat well with me at all. Call it being superstitious, but I think at this point in my life I’m just listening to what feels right. As I said earlier, I’ve slowly started to get some basic things ready. Today, I went to see my friend Katie and she helped me order Poppy’s infant seat and stroller. I’ve been stressing about this for weeks and it was nice to get it done today. For now, I just need to take care of the basics. Although the basics do not include the Poppy rain coat and purple leopard print Ugg baby boots that Rachel and I found in NYC last week… but seriously, who could pass those up? I don’t even care that we live in Arizona and the rain coat won’t even fit her until she is one. I might have squealed out loud when we found both of those things;) Best dressed Poppy girl for sure;)

After I got the stroller taken care of, I went to meet my friend, Melissa for a quick coffee so we could catch up. She had sent me a text this morning after reading my blog and it simply said, “Here for you.” I know she is always here for me. She has been from the first time I met her right when you were diagnosed. Her text meant the world to me though. Truly. She is always there for me without judgment, but careful advice instead. That is a very fine line to walk, but she always does it so gracefully with me. I am so very blessed to call her my friend. We caught up with a quick coffee and then I ran to meet Fernanda and Stacy for lunch. See, I told you I am a high functioning sad person! Look at all the people I saw today that I know a year ago I would have hidden from! The 3 of us caught up on some foundation things, life things, Poppy things, hot doctor things;);) etc…. Fernanda had her hand on my Poppy belly for most of our lunch. Your sister is already so feisty! I swear she is kicking, moving, punching, and dancing inside of me all the time. There does not seem to be much quiet time with her at all. She must be trying to prepare me for what’s to come. You know I will love every second of whatever your baby sister throws my way. Just as we were wrapping up lunch, Stacy looked at me and asked if I was alright. You know the answer to that, Ronan. I sat with my friends, told them no, and cried at the restaurant table. It’s nothing new. Crying in restaurants is pretty much a given now. I parted ways with my dear friends, thankful for them as always. I am truly blessed in that aspect of my life.

I started this a few days ago. Too much has happened for me to remember which is why I hate taking a break from writing. I don’t want to take breaks from my writing, but lately I am just so tired it’s all I can do just get through my day. This last trimester of being pregnant has me wiped out and that’s an understatement. I spent yesterday, Thursday, or some may have called it Valentine’s Day, doing some things for you. I am not a fan of Valentine’s Day. I’m pretty sure I went off about it on here last year, but as of now, I just don’t have the energy to do so. I renamed yesterday, “Happy Cupcake Day!” due to your love of cupcakes. I took some down to the clinic at PCH, just like we used to do on this “holiday,” when you were here. I saw some of your favorite peeps and caught up with them for a bit. Mostly your Sharon who I always love to visit and I miss so much. She was always so good to you. I left the clinic and went to spend some time with our Mr. Sparkly Eyes. I made sure to bring two cupcakes from you of course and we sat and ate them together. Not before I took my cupcake, smashed it into his, and said, “Cheers to Ronan!” We sat for a while and caught up while your Poppy sister was going crazy in my belly the entire time. We sat and laughed about that and I made him feel her moving all about. I am obsessed with feeling your Poppy sister. I also love it when everyone around me touches my belly as well. I welcome it with open arms as it makes me smile. I talked to him about some other things that have been bothering me in my head. My over analytical mind. He called me eccentric and told me that I am not crazy like I often refer to myself. I ended our day with my usual, “Where do you think Ronan is question?” that I’ve probably asked him 50 times before. It’s mostly always the same answer. I just like to hear him tell me over and over again, because it gives me a little peace of mind. At the end of his answer he always tells me you are still around me, you are smiling and saying, “Look at my amazing mom and all the good she is doing in this world.” He promises me I will see you again. I believe him.

I picked up your brothers early from school. Spent some time with them and took them to basketball practice. On my drive home, I literally threw up all over myself in the car. Seemed like a pretty fitting way to end Valentine’s Day a.k.a. stupidest day ever. I’ve said it before and I’ll say it again. I don’t need one day a year to have shoved down my throat of why I love the people in my life so much so and why I should show them my love by buying commercialized crap. I am thankful for the people I love, every single day. Even on the days that I hurt so much. Your daddy is the same way, Ronan. I am told every single day how much he loves me and he does not need to go out and buy me some fancy jewelry to prove his love for me. At the end of the day, fancy jewelry will not save your sick child. At the end of the day, fancy jewelry is not fucking important. And if your daddy would have come home with flowers, he would have been punched. He knows this. You know what he got me, Ronan? A beautiful picture of you and he let me sleep alone in my bed for the night because that is what I asked him to do, due to me being sick with an awful cold/not wanting to get him sick. He would have done this on any day, not just because it was Valentine’s Day. In my head, your daddy brings me flowers every single day of the week. That is a true man right there.

Now it’s today. Today where I had an ultra sound. Today where I got to see your Poppy sister with her massive amounts of hair, full Ronan lips, fat cheeks, long legs, head down, getting ready for her arrival into this world and all I could think about is what I have been obsessing about for weeks now. How am I going to do this, without Ronan here? I can’t stop thinking about the picture I have in my head of watching Liam and Quinn walk into the room to see your Poppy sister and you are not there with them. I left my ultrasound and popped over to see Dr. JoRo where we sat and looked at her pictures and I sobbed and sobbed and sobbed for pretty much the entire hour and a half that I was there. I sobbed and talked. She listened, asked questions, make me do some mental work, and I listened to her as she rubbed my feet. (best therapist ever! no drugs, just feet rubs;) We sat while she rubbed my belly, left her hands there for a good 5 minutes while your Poppy sister moved all about. I watched the tears run down Dr. Jo’s cheeks as she felt your sister. She said she didn’t think she had felt a baby move about since she had her own baby boy about 17 years ago. That made the special Poppy time with her even more amazing. We talked about a birth plan and what that will look like for me. We talked about in which ways I will bring you with me. So much to do. So much to think about that my head is spinning. I am so thankful for her love, support, and guidance. I’m home now. Still crying up a storm. Exhausted from the day/head-cold/being pregnant/lack of sleep.

This is all I can write for now. More on my Dr. JoRo stuff to come. I love you. I miss you. I hope you are safe.

xoxo

This slideshow requires JavaScript.