No sleep for Mama

Still awake. Ronan is almost done with his last bag of chemo, and so far, so  good. He’s slept right through everything. I on the other hand, have not. It’s cold in this room, the bed is uncomfortable, our roomies still have the T.V. on, nurses are coming in and out, and my mind won’t shut off. No amount of coffee will help me tomorrow but I will suck them down anyway. Auntie Karen is coming to give me a break at noon so I can go home and shower. Hopefully I will sneak in some sleep then. This totally 100% sucks. But I won’t tell Woody that. He worries too much about me. Tomorrow when I talk to him I will tell him everything went fine and I am fine. I don’t want him to know how awful and hard this is on me. I’m not a weak girl… I won’t let this break me.

I know I have been asking a lot of all of you lately. But if you have a few minutes, check out this website, www.rideforleo.com. I have yet to meet the mom of Leo, but she lives here and her husband is riding from Washington State (holla!) to L.A. to raise money for Pediatric Cancer. Every dollar would help Adam meet his goal, he is almost there. Seriously, people… skip a coffee for a day and donate 5 bucks. It’s for an awesome cause. In my new life I am going to help raise as much money as I can for Pediatric Cancer. It’s something that needs exposure and funding. I have great hope that in my lifetime there will be less toxic treatments, as much exposure as Breast Cancer, and even cures for these awful diseases. My little Ro is going to have to suffer through this when in this day and age, there could be a much easier way if the funding were there. There has to be a better answer than this chemo crap.

Thank you for taking the time to follow our journey. It is going to be a long one indeed. G’nite, my friends <3

 

Update~ Ronan woke up the night vomiting everywhere. He is sleeping peacefully this morning and I am hoping we can keep this under control today. Sweet baby Ro, I love you so.

4 thoughts on “No sleep for Mama”

  1. Hi Maya,

    I know Kay through Junior League. I remember when you were pregnant with Ronan because I was pregnant with my son Henry. I also remember talking about the twins’ names and telling Kay how much I love those names.

    I received a link to your blog through another friend at Junior League, and I have been following Ronan’s fight through your blog updates.

    Ironically, I am going through a struggle similar to yours but not the same. Henry got sick when he was about 6 months old. By the time he was a year old he was on a feeding tube. He didn’t walk until he was 2. We struggled and searched to find out what was making Henry sick. Like Ronan, he is a beautiful, witty and charismatic soul. After over 2.5 years, we finally got Henry’s diagnosis in August.

    Henry has a mitochondrial disease. It is degenerative and terminal, but there is no way to know for sure when the degeneration will start. He may make it to 18, or he might get very sick today. Henry had blood drawn a couple of weeks ago to test for a particularly devastating mitochondrial disease. We will get the results in about 2 weeks. It is distressing b/c all of Henry’s symptoms are consistent with MNGIE.

    My husband and I started a foundation called http://www.henryshope.com. You can see pictures of Henry on our website. The purpose of Henry’s Hope is to help families dealing with chronic and devastating childhood illness. We have spent lots of time in the hospital and saw so much pain and confusion. We hope to be able to help other parents so that we can possibly ease the pain or at least clear up the confusion.

    We also have 3 other children. Luke and Lily are 6, and Eli is 9 months. Luke is our biological son and is at risk for the same disease as Henry. Fortunately, Lily and Eli are adopted and not at risk.

    I know your pain. I know it isn’t fair. I know how inconceivable it all is. I hope that somehow some way you will be able to find some peace. You are a good mommy who loves her children with all of her heart, and your children know it.

    Take care,
    Kristen Foster

  2. Hi Maya~ I am praying for you and Ronan as you get through this week in the hospital. I spoke with a woman last night going through treatment for breast cancer…she said something kinda different but kinda interesting too. She said before the dr gave her her first chemo treatment she asked to hold the bag(s) in her hands first. Kinda weird, I know. But then, she went on to say (in her thick Argentinien accent) that she wanted to receive the medication in love, to make this medicine her friend. Again, kinda different but I found it pretty neat too. She didn’t want the chemo to be the enemy but her ally, knowing that God was working through this medication to heal her. Wishing you a good day today…love, Michelle

  3. Thinking of my favorite little Ronan this week and keeping him in my prayers constantly throughout the day. Sending you love and strength always.

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