Wednesday, October 22, 2008

Letting it all my own way...

This blog has been great for me but I tend to hold back how I feel. I put the updates out there and let a little out but I am not one to 'let it all out for the world to see'. So I tend to have my breakdowns in the shower where no one can hear me cry over the water running and the radio on. It's the only time of day that I can acknowledge the fact that I am a human, not the robot I feel like I am during the day to day routine and that my new reality is that I am a mom of a 2 year old with brain cancer. (By the way, that sucked writing that... it took me an hour to get it down... I haven't ever written that before...)

It's so hard when you have to hold it together for the kids, Matt and everyone else. So, I take my 10 minute shower, wash my hair and cry it out for the day. That is my time to be a mom of a kid with cancer who is petrified of the road ahead of her little guy, her daughter, herself and their family. The shower is where I get it out. It's easier that way, if I don't cry in front of people they can't cry in front of me. And I can't have anyone crying in front of me because then that brings it all out and I am just so afraid once I start I just won't stop for days.

Mike is such a strong, tough kid. He really is amazing. Through all of this he plays and laughs and just smiles. And boy, does that smile just melt me into a puddle. But, for as much of a softie little mush that he can be, he is tough. He fights and screams and yells and I let him. He needs that fight. No one can take that fight out of him and I am so glad he has that spunk. The ophthalmologist yesterday said he was impressed with his strength and his stubbornness. And the fact that as Mike was kicking and screaming on the table I just kept saying, 'it's ok buddy, you're going to be ok, keep fighting it, just stay strong and keep up the fight' the Dr thought was great... He is so used to parents trying to get their kids to stop fighting and behave... I told him you won't get that with me, we need all the spunk, stubbornness and fight we have in us for the road ahead so why get him to give that up?

Katie is doing great for all that she has been through too. It definitely helps to be up here and at my mom's house. She goes through rough patches of being upset and confused and worried but I try to spend time with her every night after Mike goes to sleep. It is especially hard on the days that we have to go into the hospital because she is then worried all day until she knows we are home. I have referred her to a siblings support program and I am hoping that will help her. I am also looking into enrolling her in Gilda's Club's NoogieLand for kids with family members with cancer so that she can be around other kids who are facing the same fears and worries she is facing. I don't know how to explain all of this to her because, honestly, I don't get it myself.

And while I am saying that, I really, really don't get it. I know, I know... God never gives you more than you can handle. BUT, I've been saying it for 6 weeks now... He certainly is pushing the limit with this one. I feel like I am going to break. I keep praying that I am making the right decisions and doing the right things for my kids but how the hell am I supposed to know what I am doing. It is absolutely in-f*cking human to have to admit your child to a cancer care hospital. I look at these kids while I am waiting for the appointments with Mike and they are all laughing and playing and running around. They are amazing, so strong. So much stronger than I would be in their situation. They are going bald or have no hair, the are hooked up to an IV, they have appointment after appointment and they still play and laugh. It's a way of life to them but you can see the worry in the parents' eyes. We all say hello and talk and make polite chit chat, but we are all worried. This is the way of life for so many parents and families. Day after day, week after week we do it. And we do it with all the strength we can muster up to be there for our kids. Like I said, it is inf*ckign human. To watch and wait while the nurses hook these kids up to IV after IV of medication that no one really knows if it will definitely work. To have to wait in a cold waiting room for surgery after surgery to be over only to have to hope and pray the pain meds work during the recovery period so that your child isn't in pain. To get up in the middle of the night and walk over to the crib to make sure he is breathing like you did every night when you first brought them home from the hospital because, now more than ever, you know how fragile and precious life is. To pass out 5 minutes after you put your kids to bed only to wake up 2 hours later and be up for hours on end. To walk around like a zombie from not sleeping. To laugh at those people who put makeup on to bring their kids to school while you realize you are running out with a wet head from a quick 2 minute shower or in your pajama pants again because you fell back to sleep after the alarm went off after being up all night thinking and worrying.

It has been a really tough road so far. I am not going to kid myself and say 'but maybe now it will be easier'. I will say that we have dealt with everything that has come at us and we will deal with everything that is yet to come. I thought that the worst part was having no answers and everything was happening so fast. Unfortunately, the answers we were waiting for are that there are no answers so the fear of the unknown is still out there and that sucks. We have a long way to go but the support system up here is the best. I couldn't ask for a better group of people up here surrounding us. I know that I couldn't do this anywhere else. It is amazing that I can't walk down the street or open an e-mail without words of encouragement and people telling me they are praying for us. I am so grateful for every prayer and good thought that people are sending out for us.

Thank you all for reading this. I am hoping that by me letting this out a little and ranting a bit you will all understand why most of my posts are factual with some feeling but not really letting it all out. I can't face these feelings every day more than once a day. They are all there, they are horrible and I wish that none of you ever have to have them. Like I said, I just pray for the strength to get Mike, Katie and our family through this and to make the best decisions I can for all of us.

Please keep the thoughts and prayers coming. We appreciate them more than you know...



DH said...

Chrissie, you, Mike and your entire family are all in my thoughts, and prayers. Stay strong, and know that you always have a friend here if you need me. Donna

Andersen Family said...

We so need to meet. You took the words right out of my mouth. Praying for you guys. If it wasn't for your situation I would be jealous that you are in NY in the fall.


Kay said...

Chrissie, You are all in my thoughts and prayers. I just can not begin to understand what you are feeling and going through.

I never tell people that God won't give them more than they can handle, but instead tell them God won't give you more than HE can get you through.

You keeping this blog is a great thing to do. When Mikey comes though this strong and healthy you will be able to show him how strong he is. You know when he's a teenager and he think something is the end of the world, you can say "come here kiddo, let me show you something".

{{{Hugs}}} sorry for writing a book

DysFUNctional Mom said...

I think you all are amazingly strong, but I pray that you keep up that strength.

Jennifer said...

I'm sending you all my best... my best HUGS, my best wishes, my best thoughts and mostly my best PRAYERS... for Mike, Katie, your husband, YOU and the rest of your family and friends.

My heart is breaking for you all. I can only imagine how hard and terrify this all must be. BUT you are right KEEP THE FIGHT... Mike will beat this cancer. He will. With a smile that can melt anyone and a heart that is just beautiful and full of laughter, playfullness and spunk he will do it. :)

you are all in my thoughts and prayers.

sending lots of LOVE and support!!


MS said...

Chrissie, I don't know if you remember me but I dated Jim back in high school :-) I found your blog through his Facebook page and wanted to see what you are up to. Your family is beautiful. I just read this entry and am moved to tears for you. I want you to know that you will be in my thoughts and prayers and I will talk to my Mom - by the end of the day she will have half of Puerto Rico praying for you too :-) I wish you and your family all the strength and love you need to get through this and more. With love, Michele Scotto

gingela5 said...

I stumbled upon your blog from someone's blog (I can't remember) you are ONE tough lady. And your son is one tough cookie as well. I'm sorry you are going through this--I can't even begin to imagine what it's like. I just want you to know that you are in my thoughts and prayers!