Well I think my days of not sleeping are finally catching up with me. Since I got home from the hospital 3-1/2 weeks ago I haven't been able to sleep much more than 4 hours a day. I usually sleep like midnight to 1 or 1:30 and then I lay wide awake and fall back asleep sometime around 3:30 or 4 and wake up between 5:30 and 6:30am. It sucks, it's super boring laying in bed and irritating that I can't fall asleep. Hopefully on Monday I can decrease my steroid dosage a little more and that will hopefully help. I am usually fine through out the day but now by 6 or 7pm I am just tired, irritated and crabby which sucks. It's kind of crappy to think that I will just be getting more and more tired, that my days of feeling good and healthy are numbered and that soon I will start radiation and things will change. I have been feeling SO good lately. I have SO much energy during the day. Our house has never been more organized. I am not even kidding when I tell you EVERY SINGLE closet in our house has been completely gutted and reorganized. Jamie is really enjoying this about me as I am not naturally a real good cleaner or organizer.
So between starting to feel a little bit more tired everyday and knowing that my radiation will be starting soon, I am just starting to get a little scared. I feel like right now I am living in this happy little bubble, I don't feel sick, I don't look sick so it's like I am not sick. But soon I will start radiation, my hair is going to start falling out and I will be very tired. I am just praying that I can keep my spirits up; even when I start to feel and look sick. I have been so positive this whole time and now I am starting to doubt myself and if I can really keep this up. I know that I can have bad days and that I will have bad days but what if every day is a bad day. What if every morning when I look in the mirror at myself I want to cry? I really hope this isn't the case, I really hope that I can continue to be the strong woman that I am but I definitely have some doubt creeping up and I hate it. I get mad at myself for even having these stupid thoughts.
I guess all I can do for now is worry about TODAY. Keep positive, keep smiling. Continue to organize this house and simplify my life so when my energy runs out it's okay. I just want my home in order, I want to keep everything simple so I can just relax, enjoy my kids, rest and get better. I know I have a WHOLE army of people fighting this battle with me. I can't even begin to thank everyone for all the kind thoughts and prayers, gifts and meals. It's been amazing, it has carried us through this whole ordeal so far and I know it will continue to carry us through the next few months. We have had so many amazing meals lately and the meals are coming with homemade cards, gifts for the boys, amazing desserts. Last night we had the yummiest pizza bubble casserole that Jacob and Owen thought was SO cool. It came with a box of Runts and People magazine for me. Nada - not sure if you knew but Runts are my FAVORITE, the box was completely eaten within about 10 minutes of my seeing it! Also, Owen is going to LOVE the super hero book! I will be giving that to him at the hospital next week. He's so into anything Hulk or Avenger related so he is going to flip out when he sees the book! We had amazing pumpkin pancakes with sausage that the boys both loved. Jamie brought home a box of chocolate Turtles that a customer of his had for me, thank you very much Mary Lynn, there are DELICIOUS! Everyday we are blown away by the kindness we are receiving from both friends, family and strangers.
This morning, my mother in law and sister in laws treated me to a spa day. We all met downtown I got a pedicure and the MOST AMAZING massage EVER!!!! It felt so good to get out of the house and get pampered, spend some time with the girls and just escape. They have been so amazing to me throughout all of this, I don't know what I would do without these women in my life.
One of my biggest group of supporters is a group of women I met online when I first found out I was pregnant with Owen. I joined a site called iVillage and joined an online group of women that were all pregnant and due in September 2008. Sounds weird but this group of women has stayed friends over the last five years. I have never met any of them in real life but we all talk daily online and have been by each other's sides through health issues, divorces, miscarriages, worries about our children. It's a diverse and amazing group of women that have been there for each other through a lot. I received a package in the mail yesterday and inside was a beautiful handmade blanket from them that I will use everyday and a very generous gift card. I sobbed for a good hour. Not only from their generosity but for the amount of love and support they have given me from Owen's very first days in the NICU to today as I fight this stupid brain tumor. I could never thank them enough for all their encouragement! I am so lucky to have found them all five years ago!
So I guess I need to start going to bed a little early, hopefully getting a little more rest will help my attitude which seems to be slacking a little right now. I just reread some of the post above and I seem like kind of a whiner tonight. Sorry! :)
Tomorrow I will be busy getting us packed up for the hospital. We check into Children's with Owen at 10am on Tuesday morning but I like to be prepared and want to have us mostly packed up tomorrow. Hoping we are home by Friday or Saturday. I will be bringing my laptop along so I can update the blog.
Hope everyone has a great Sunday. Here are a few photos of my boys and our super exciting life stuck at home all day. Love these guys!
This is ALL Owen wants to do ALL day long, sit at my computer and look at costumes on Amazon.
Jacob refuses to sit in his high chair now and look SO big sitting like a big boy.
I don't remember Batman having a nuk!
Batman and the Joker. Owen has been BEGGING for this Joker costume forever! I didn't want to get it but I finally caved and we ordered it on Amazon. It got delivered yesterday and he wears the shirt and pants but is DEATHLY afraid of the mask. Made bedtime a BIG production last night. Should have NEVER bought this costume but he was wearing it all day again today.