Nights are the worst

During the day, I can usually stay focused and busy enough that my mind doesn’t wander too much. It’s night-time, when I’m alone with my baby sleeping next to me that my mind spins and won’t shut up. I have a hard time falling asleep at night which leaves me often tired for the next day. I look forward to the one day in the week that everything catches up to me and I am so exhausted that I can actually fall asleep early. You know when I’ll finally sleep peacefully again? Probably when he is about 16 and has been cancer free for many years. Until then, it will be like I’m waiting to be struck by lighting. Ronan looks so peaceful and sweet. His eyelashes are so long… I am going to be sad when and if he loses them. I’ve gotten used to his bald head, but every little bump I see scares me into thinking that another tumor is growing. I will feel so much better after we finish this second round of chemo and he gets another scan so we can have actual proof that the chemo is working and the cancer is not growing anywhere else. We start our second round this Monday at 9 a.m. We will be in outpatient all week doing his treatments. I am feeling a little more prepared this time, as this way of life is becoming a little more familiar to me.

Liam and Quinn cut their hair pretty short. It was a big deal to them and a lot of tears were involved. We basically made them do it. Poor buddies. I told them if they didn’t cut their hair I was going to shave mine. They did not like that idea at all. I tried everything I could do to talk them into letting me. I even told them they could shave it for me…. but I got no takers. They said I would look too weird. I get that this is all scary for them but it was worth a shot. I know as a parent I also need to keep things as normal as possible and a mommy with a shaved head is not normal. So, unless they change their minds, it’s not happening. Woody cut his hair super short as well and they all look so handsome. Ronan was really happy that his daddy and brothers got “army men” haircuts. I think he is finally feeling better about his.

Today, Kay and Charlie came over so I could go to The Village and watch Woody coach Liam and Quinn’s first basketball game. It really meant a lot to me to be able to go and I could tell it meant a lot to the boys too. I ran into A.J.s to get an iced tea before the game and the tears started pouring as I was waiting in line. Good thing I had my sunglasses on. I have the hardest time in public and as I was walking out of the store I kept thinking…. how can all these people just go on with their lives? Don’t they know how I am feeling? I felt like the whole world just needed to stop and not go on because of the crisis we are in. So silly and unrealistic but thoughts like this consume me EVERY time I am out in public. I often have my selfish moments with the voices inside my head screaming how unfair this is. I know it’s not fair for anyone to have to go through anything like this, but us?? Always the same stupid question; with no answer. Why us?? We are a normal, good, loving family who doesn’t deserve any of this. Deep down I knew something like this was around the corner. Call it my weird insight to things that I’ve seemed to always have my entire life. I’ll never forget about 3 months ago I called up Tricia and I was bothered about something at the time and I was driving by myself venting to her. I told her that I was just waiting for the ball to drop because nobody gets everything they want in life, and I had everything. I told her that I was feeling scared and unsure because everything was so perfect and who has a perfect life?? But here, I had it and I was convinced that something was going to happen. She told me to stop talking my crazy talk, that I deserved everything that I had and yes indeed I did deserve my wonderful life because I am an amazing person. I look back at this conversation all the time now. It’s eerie to me and makes me question everything. I’ve always had a very overactive imagination but never in my wildest dreams could I have pictured us to be in the situation we are now. This is a bloody nightmare.

Tonight, Jen and Liv came over. We ate pizza, played with Ronan, and watched a movie. Woody and the boys’ were at the ASU game so I really needed the company. Those girls are the best. It’s hard for me to be alone now and they are always a great distraction. I used to love my alone time but now I can’t stand it. Especially at night. The boys had a great time at the game but were so tired when they got home. They both went straight to their room and passed out. Wish I could do the same. Hoping for a little more sleep and less tossing and turning tonight. Goodnight sweet angels.

xoxo

8 thoughts on “Nights are the worst”

  1. Dear Maya,
    Your post struck me profoundly, not because of the extraordinary circumstances that envelope you day in, day out. But mostly because even though i have healthy children who are growing up way too fast, I lay awake at night thinking of all the things I should have told them today, and all of the things I need to do a better job of making sure they do, of all the things that still could happen to them…..and yet, your post puts everything in perspective. One of the blessings I see in your situation is the young age of your children……I don’t know you, but I do know that your children are young enough that there is much that they won’t remember about the pain and difficulty of this experience. The blessing is that you are a strong & wise mom who will find a way to help make sense and purpose out of this experience not only for your family, but for anyone else who has the privilege of crossing your path. I say this from experience. When I was very young, my father was critically injured in a very serious car accident. It changed my life forever…..it altered my life in ways that I’m still discovering today at the age of 47. Do I live with regrets because of certain things I missed out on growing up? In the past, I would say “yes, absolutely.” But that was before I discovered the beautiful gifts that come from adversity. Your Ronan seems like an incredibly strong & resilient child, and your family seems to be blessed with so many gifts and strengths….hold on tight to those, Breathe in the strength of so many prayers and good wishes on your behalf, breathe out all the yucky stuff….give it up to God, because He is definitely listening with all the prayers going out for Ronan and your family! And when you need to reach out, know that there are so many angels out there who will be there for you, no matter what, when, or why!
    Hugs & Prayers,
    Jennifer D.

  2. i know you don’t know me but i’m a follower of your blog. i heard about you and your situation through a mutual friend at the beginning. i think about you and your family often even though we’ve never met. so i know i’m being super nosey when i ask this but why didn’t ronan go to the asu game? i thought the dr. gave clearance? i know you don’t have to answer…just wondering.

    i hope today is a good day…no GREAT day for everyone! i have no idea what you’re going through but just know that even strangers out there care and willing to help.

    thinking of you,

    sonia

    1. After talking about it, Woody and I just decided to err on the side of caution. God forbid, we took him to the game and he ended up catching something and getting a fever or infection. That would delay us in his chemo treatments and that is the last thing we want to do. He needs to be as healthy as possible to start on Monday. Better safe than sorry has become our new motto:)

  3. Hi Maya,

    Usually I truly don’t know how you are feeling as thank God I haven’t had a child who was so ill, but today you hit a chord I know. Why does the rest of the world go on when all of life has changed? When Bill was in Vietnam and no one cared, when my mother was reaching the end of her life at 86 and a few other times too I’ve felt that. You will be so much more aware of other’s pain and be able to reach out to them and help.

    Shelly & JC Huckfeldt have little Hannah who is going through much the same stuff as Ronan. Her blog is http://www.caringbridge.org/visit/hannahhuckfeldt/journal?jid=6087038, look it up as she can guide you as they’ve been doing this for 2 years. Hannah is doing really well, she’ll give you hope.

    We care. We pray.

  4. Maya –
    After I became a mother (31 years ago) I realized that the darkness makes worries grow. I still lie awake at night worrying about things that during the day seem manageable. I am so sorry you are unable to sleep. You need and deserve your rest. The author Madeleine L’Engle, when her husband was ill, was asked how she coped. She said that at the end of the day, she “hangs it on the cross.” I love that image. Easier said than done, trust me, but still such an image filled with grace. I bid you peace.

  5. Praying for a good Monday and sweet sleep tonight for all. I love what Rita D. wrote and agree. When there isn’t anything that you can humanly do, give it to Jesus. Ask Him to take care of it for you while you sleep for a little bit. He can totally watch over Ronan. He’s already doing it.

  6. Praying daily for “The Miracle”. We care deeply for your family and what you are going through. Looking forward to the game this weekend with Mimi, Papa , and the boys. GO DEVILS !! Love, Aunt Joan, Uncle Larry

  7. You have no idea how our feelings have been so alike. I do not have a perfect beautiful little boy fighting cancer but instead like you I have 3 kids. My oldest is a daughter then two boys. But like you my baby is a fighter. He was born with CHARGE Syndrome. He is DeafBlind and I remember my brother driving me back to the hospital in rush hour traffic in Twin Cities Mn and thinking the same thing; “where are all these people going? Do they even know there are 70 some babies in NICU all fighting to stay alive? Do they know about my little fighter, my little grizzly bear? My little boy that cries like a bear cub? It’s why we named him Kodiak. He’s my inspiration. He is now 10 and his chances of livin to age 1 was 50/50. Then chances to live to age 5 was 50/50. Yes I still have my grizzly fighter! But what he’s gone through is so unfair. I look at people around me worried about their baby having ache, or their litte one having to wear glasses or braces and I think “how vane!” We do live so differently! My sons doctors thank me for not yelling at them when things to wrong. I may shed tears but like you I remain strong! I smile and try to take it all in stride. To top it off my husband could not handle it. His drinking accelerated after Kodi was born. We tried everything but in reality we all just got hurt more. After threatening to kill us all including my mom I realized we needed restraining orders and I had to file for divorce to get protection. Im no ware near perfect but I get irritated at couples petty arguments. I hat not having a husband to help. I’m raising 3 kids alone and Kodiak is my largest challenge of all. But I would NEVER want to lost him. But is live with that being more of a reality than my other two. It’s like it looms over me that it could happen any moment.
    Your blog has affected me in so many ways. I can’t donate for your cause and I regret it. But I tell people its for good reason. I have my hands so full trying to support us and get things Kodi needs. He’s always had DeafBlind status but up close he was able to see enough to sort colors. His favorite was yellow. However the past two years he want through trauma from growing that caused his eyes to deteriorate. They were beautiful black brown eyes but now he’s totally blind. He’s also going to have to have the remainder of them removed and get prosthesis eyes. The Dr said when I’m ready… “when is a mother ever ready to have her childs eyes removed!” we lost the little communication we had because he figured we could not see him sign since he could not see anymore. Well he’s just started signing “more” now as he realizes he gets more swim time, candy, food, drink, etc is he signs it.
    Anyway, my daughter has had to pick a blog to follow and read and do a report on. She chose yours, she loves Taylor Swift and we sing her songs at the top of our lungs at times… Her song for Ronan makes me really sob!!! Like not just tears!!! Really sob!!! My little Kodiaks life is like a prison. He was my little monster and now is so depressed. Yet he draws people in by his sweet personality and his giggles.
    If you ever feel like emailing me you are welcome to do so. I have a caring bridge site for him and others. We just got wristbands that have http://www.ourbrotherkodiak.com on one side and the other says “DEAFBLIND & LIVES LAUGHS LOVES” and he does this well.
    Heather

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