Saturday, December 6, 2008

Another emotional release...

Well, here we are... just about 24 hours after getting home from Mike's first transfusion. Matt is here, Christmas decorations are going up, the kids are ok... I mean, Mike is still cranky and I can tell he isn't feeling right but for everything he has gone through, especially this past week, he's ok... so I should be ok. I really should be ok, right? But, I'm not. I'm tired... I don't mean just I need to get a nap tired... I mean really freaking tired. I am tired and drained in every way that a person can be tired...emotionally, mentally & physically tired.

I was driving in Brooklyn today and saw a billboard for St. Jude's Research Hospital. It showed a little girl and said, "Ellie Vs. Brain Tumor. Let's help Ellie win." and said that Mike is one of those kids. That's a harsh reality to deal with. Mike, my 3 year old, has a brain tumor. Actually, if I want to get picky and get into semantics, Mike has an 'unidentifiable central nervous system tumor' because it's in the brain, spine and cerebro-spinal fluid and they can't tell where it started. Still, for some reason they call CNS tumors, brain tumors so it's all just a play on words I guess. But, that could be Mike on that billboard. Granted, he still has hair... it's thinning but it's still there but that could be him, on a billboard for the world to know he is fighting a brain tumor.

All around me people are Christmas shopping, listening to Christmas music, watching Christmas movies... and I am just not feeling it. My sister, E, says it's a bad day when the person who decorates her house like an elf came in and threw up Christmas stuff in it doesn't feel like she can get into the Christmas spirit but I can't. Don't get me wrong, I am doing what I should be doing for the kids... I am hanging the stockings, buying and wrapping the gifts, smiling, playing the Christmas movies and music... but I'm just not feeling it... at all.

I am still crying in the shower and worried all the time. There isn't a day that don't I worry that I am not doing everything I can to get Mike healthy and to make Katie feel like very little has changed. I am constantly feeling Mike's forehead to make sure he doesn't have a fever, watching him walk, scrutinizing every move that he makes to make sure he is doing things just as he was pre-tumor nightmare. I am constantly trying to make things up to Katie... I let her stay up an extra 15 minutes at night so she and I can just hang out together, I make a bigger deal out of every good test she brings home and I give her a bigger hug every time she walks in the door. I try not to put Mike in a bubble, I try not to treat them any differently but this changes you as a Mom. You always knew your kids were special and important and delicate and the best kids that ever walked the Earth, but this changes absolutely everything and every moment with them gets sweeter and that much more special.

Yesterday as we were leaving the hospital my sister E was playing with Mike in the playroom and my Dad was getting the car. I was waiting and watching Mike play. Behind me, one of our favorite nurses, Connie, was hugging a kid, she must have been around 10, and her parents. From the way they were talking I knew she had been a patient there for a long time but she had a full head of hair so I also knew she is in remission. They were back at Sloan for another set of follow-up scans because they were saying that they had to catch a flight back home since they were done for this trip. And as they were leaving Connie hugged the mom and said, 'Now take your healthy kid and get out of here'... and I just got tears in my eyes. Every mom that walks in that hospital hopes and prays to get kicked out of there like that. I realized just how much I want to hear that and how long a road we have to go until I do hear it. And I will hear it. I know I will hear it. I won't just hear it once either... I'm going to hear it again and again and again after every scan he has. I know Mike will be the healthy kid that gets kicked out. I know it because I will not accept hearing anything else. And along with Mike, I hope and pray that the other moms we know hear it as well. That the kids we know and have met at MSKCC, especially MK and CM, are sent out of there with clear scans year after year after year.

On that note, I am going to go hang out with Matt, Katie & Mike. I hope that you are all well. Please keep us in your prayers and the next post I make I will give you all the info on donating blood.

Thanks and Love to you all,


Andersen Family said...

Ditto!!! except for the cancer part just the feelings of having a sick child, the unkown, how we change, the other sibling and the list goes on.... Wishing your world was different and that your family did not have to go through this. Thinking about you, understanding you. Big old hugs being sent your way.


Train Wreck said...

It's difficult to get into the holiday season this year... for anyone. Between loved ones having a sick child, close friends losing their jobs and even worrying about your own job... it's tough.

All I can say is... keep doing what you're doing, which is being more than a mom: you're acting like a guardian angel for Mike & are behind him through all of this. And in case you feel any of your wings get clipped, no worries: you have a bunch a people, waiting to bandage your wings and help you along the way.

Keep the faith, Nails...

The Hammer

DysFUNctional Mom said...

You have every right to have a hard time getting into the spirit. Don't feel badly about it. I think you're doing great.