I’ve pretty much been homebound all week. Around 4:30 I was feeling like I needed to get out for a bit. I called up Trish and no questions asked, she was off to the rescue. Trish and Marisa picked me up for dinner at 6 and we headed to Chelsea’s Kitchen. We sat out on the patio and enjoyed the beautiful weather and the friendship that surrounds us. A friendship so deep and so solid that it is really only with them, that I am able to let my guard down. We sat for 2 hours as I divulged my deepest and darkest fears and thoughts. The ones that I have going on in my head most of the day but I refuse to share or acknowledge. I let it out and knew that in my weakest moment, I was not being judged, only loved. I was being real and feeling the things I have been trying not to feel. It is in front of these two that I am safe and protected. They are my soul sisters. They accept and love me no matter what. Do you know how rare that is? A friendship like that? It is on a whole other level and I am so, so, lucky to have them. We laughed, and cried and I think I scared our server away once or twice:) But I didn’t care. I’m learning when a breakdown happens, it happens and you just have to go with it.
Ronan is sleeping with me in my bed and Woody is in Quinn’s and that sucks. I don’t know if we will ever come up with a better solution while we are going through this. I have a hard time sleeping without my kids when they have a cold. How do you not sleep with your child who has cancer? I wouldn’t be able to. At least with him beside me I am able to get some rest at night. If he were alone in his room I would be up all night checking on him. Either way I lose… because the time that Woody and I had together at night is now gone. I don’t see us getting it back anytime soon. I just pray that we are strong enough to survive this storm. I miss Woody every second of the day.
P.S. After talking with Woody we both agreed we should not take Ronan to the ASU game on Saturday. It’s just too risky. I’m going to have to find out where I can buy a Sparky costume of my own so I can wear it around the house for him:)
Today was awful. Horrific. Something a mother and Mimi Kay should never have to experience. It’s those damn dressing changes for his broviac. You’d think in this day and age there would be an easier way. It took 4 of us to do it. Our nurse Sharon is amazing and he was handling it really well until she got to the side of his skin and started to peel the tape off and we could see that his skin was raw underneath. We would have never known as he has not complained one bit. It was so painful to hear him scream, yell, and cry for me and there was not a thing I could do. Sharon cleaned around the area and put a new dressing on. She moved it in a different spot as to not irritate the skin that is now bloody and raw. I can’t belive we have to do this once a week. I pray that there is some relief and his skin heals quickly. He was so brave. It took him about an hour to stop crying after. I put some neosporin cream on it and it seems to be helping. I wish I could take all of his pain and give it to myself. I would give my left arm for him not to feel or experience any of this. UGH. Worst day in a long time.
On a better note… I asked the doctor today if Ronan could go to the ASU game this Saturday in our suite. He gave me a big fat YES! So happy about that. All of Ronan’s counts look great and the doctors seemed really pleased. We will just take a ton of hand sanitizer with us and Mimi and Papa are contacting somebody at ASU who will give us a ride to top of the stadium. Who knows… maybe they can get Sparky to sneak in a quick visit too;)
P.S. If anyone knows Oprah personally can you please pass along the message that she needs to do a show on childhood cancer. I have been emailing her once a day with no response. It’s time to raise awareness on this subject. Far too many little ones are hurting. I thought that woman had covered everything. I am shocked nothing has been done on this. Do me proud, Big O. Before your show ends this season!
This morning I woke up at 4:30 on my own. I had been planning on waking up at 5 to get to boot camp, but 4:30 is when the little alarm went off in my head. Ronan was sleeping right up on me. I watched him sleep for about a half an hour, then talked myself into getting out of bed to go to boot camp. It was hard. I wanted nothing more but to stay in bed and snuggle up to him. But I didn’t. I got myself up outta bed, teeth brushed, clothes on and let Woody know I was heading out the door. For those of you who don’t know what I am talking about when I say boot camp, I’ll explain. When Liam and Quinn were about 2 and I was tired of the normal gym routine, I stumbled across this website for a boot camp class that is held outdoors, super early in the morning, at a mountain preserve. The scenery is enough to make anyone fall in love with it, but the icing on the cake for me came in the form of the woman who teaches it. Her name is Tammy and she is inspiring, raw, funny, honest, and can really kick your butt. Her workouts are more than just workouts… it’s almost like a religious experience. She is all not only improving your body, but your spirit and soul as well. I’ve been doing her boot camp off and on for 5 years. It is by far one of my most favorite things to do in life. If you have the time check out her website.
So, today I went back. It was weird even driving there because even the drive was different. Everything is different now. I was one of the first one’s to arrive and it was still dark out. As soon as Tammy saw it was me she came and gave me the biggest hug and just held me for a bit. We talked about what is going on and she gave me some great words of encouragement. Then she proceeded to kick my butt for the next 50 minutes. I was feeling it too. I am pretty consistent with my workouts and I have not done a thing in a month. I felt it today and it hurt. But the hurt was good. It was good to feel something other than numbness.
While I was in the middle of my workout, it dawned on me that life has to go on. As much as I would like to stay in my cozy house with my sweet baby boy and never leave; I can’t. I have to live a little bit. Even if it just means getting up to go and workout. Doing something little like that for myself is going to give me the strength I need. And even though I am full on in the fight of my life; life is not going to stop. So I’d better buckle up and make the best of it. EVERYDAY.
Today, we go to the clinic to have Ronan’s blood levels checked and his dressing changed. Not looking forward to that. I am going to talk to the nurse about taking Ronan out a little bit. Poor kid is dying not being able to go anywhere. I told my girlfriend, what am I supposed to do… throw him in the car and let him stick his head out the window like a dog?? There has got to be something I can do with him that won’t endanger his immune system. Especially on the days like today, where I can tell he is feeling great. I don’t see any Target trips in our near future…. but maybe a park??