I started this post last week and have just now finished it. I know I'm a bit behind - what else is new. I now owe you 60 things I guess. I will try to post my 30 photos this evening and maybe another list today!!
This may be a mixed list - some good, some bad - yes there are some good things about going through something like this. Good lessons learned!
1. When your child is sick and you know he's sick and the doctor blows you off - stick with it - Mother's intuition is real.
2. Sometimes the odds are against you. (Cole's tumor is usually cancerous but some aren't so we were hoping his wouldn't be, even though the odds were so small)
3. Sometimes the odds are with you. (We were told if you were going to have a brain tumor, this is the one you want. We thought the doctor was crazy but then we met kids that had worse brain tumors - some are still here, some aren't. We really have been lucky)
4. When the doctor that knows everything about this type of cancer tells you something, you believe it - no matter how much you want to deny that it could happen to your child. (We still hold on to that denial just a bit, hoping Cole will be the child that beats the odds)
5. Bribery is a good thing when you have to change the dressing on your child's central line.
6. It's hard to say no to anything Cole could want when you experience something this traumatic and it was OK to spoil him!!
7. The families you meet on a cancer journey will always be important to you, even if you don't keep in touch that well - they were in the trenches with you and you love them for being supportive, even when their day was just as bad, or worse, than yours.
8. Your kid won't necessarily remember the bad stuff - the sticks, the physical therapy he cried over, but he'll remember the fun times - the games we played or pictures we drew everytime we were inpatient. Shouldn't we all live that way - remembering just the good times?
9. Your real family won't always understand what you're going through. Just deal with it. They aren't living it like you are - so learn to adjust to what they say or how they feel, don't wear your heart on your sleeve (i learned this the hard way). This is when you lean on your new cancer friends - they really get it.
10. Spread your story - talk about it. It helps in so many ways. It's still emotional, but it's healing for me to talk about it.
11. Remember that when you talk about it - others don't have the background knowledge you now have - others don't think any of it is funny. Be sensitive. I sometimes feel like we make light of situations but only because sometimes you have to laugh to keep from crying. We laughed a lot - and made lots of jokes along the way. Some will still have me holding my side laughing with tears in my eyes. Not everyone laughs when we say Cole is on HGH so he can play Major League Baseball when he grows up.
12. Other families need your information. I know I would like to know more about what other families are going through. The information is out there, you just have to find it - and I'm looking and have received great advice, and can maybe give some too!
13. Sometimes when you share your story you also have to remember you aren't as sensitive to it and you may make people cry (instead of laugh at the jokes) - remember that and try to be sensitive - we aren't so good at this part I realized recently.
14. People you don't even know will pray for you and your family when you are going through this - it's such a blessing so you have to pay it forward and pray for others that you don't really know either. We know those prayers carried us through this journey.
15. People will do things for you that will blow you away. Whether it's giving you money, gifts for Cole, whatever - you have to be thankful for it, don't try to make them not do it - it's there way of paying it forward maybe - it's a blessing they have to pass forward. Take it and do the same when you can.
16. I have learned that not every kid with medulloblastoma is like Cole. Just because someone else has a reoccurence, it doesn't mean Cole will. Although, we know it can happen - I have to remember not to stress myself out about it.
17. Everything that St. Jude says is like 100% true in my opinion. I don't think Dr. Gajjar could ever be wrong. If he told me Cole had gained twenty pounds even though my scale only showed four pounds - I'd believe that man. That's how wonderful St. Jude is!!!
18. Cole will stuggle for a long time, or forever, because he's had cancer.
19. Even if he struggles, there are definitely places where he'll exceed expectations. We have to figure those places out and encourage him. Even if it means buying a drum set and letting him bang away!!
20. He's not going to be a doctor.
21. He's not going to be a jock.
22. He'll be perfect to me though - no matter what he is when he grows up.
23. There was a reason why I wanted to be a teacher - I always thought it was to help other kids, maybe change one kid and reach them the way one of my teachers reached me. But, now I think it was really all about Cole.
24. There was a reason why Cole had cancer - God knows and I'm ok with NOT knowing.
25. It hurts when you see a child fight cancer.
26. When kids that are really young have cancer, they have no idea how hard their life may be later, and have no clue that they should be angry and mad - they usually will give you a smile and act like it's all ok. I think we adults could learn a lesson or two from them.
27. One day Cole may be embarrassed that his hair is so thin and he has an old man bald spot and a huge scar. I hope we'll know how to deal with that and he won't feel insecure about it. I hope he'll have a sense of humor about it maybe -whatever will help him cope.
28. One day I may say something to someone in Walmart that isn't nice. Cole rides in the buggy most of the time - it's easier for me. So his back is to people that are coming our way. This means people see the thing hair and bald spot. As they pass us, they will turn and look at Cole. They just have to see him to see why his hair looks like it does. This makes me angry. Especially when they then look at me and give me a sweet smile that means "oh bless his heart". It drives me crazy. Don't look at him that way and don't look at me that way. Just keep rolling by with your squeaky buggy and think to yourself - I'm not sure what happened to that sweet boy - but God please continue to bless him for the rest of his life. That would be a nice thing to do. I know it's hard not to look or stare - but geesh - grow up already. It's usually adults that do this - not little kids wondering what's wrong.
29. Educate children about cancer. I wish I'd been able to talk to Cole's class about cancer and about how sick he was and how great he's doing now. I think it would give them a little more understanding when Cole doesn't 'get' something, or when he's slower on the playground, etc. His classmates are great, but I wish I'd been able to talk to them about Cole a little. A few have asked questions and I've answered, but only a few. My fourth graders from last year asked questions so I had a little chat with them and told them all about it. Even brought pictures to show them how he looked then. I think it made them think a little and appreciate that they were healthy maybe. Or just be tolerant of people that are a little different. They were all so sweet to Cole.
30. Cancer sucks - there's no other way to put it. It changed our lives forever and nothing will ever be the same. The old Cole is gone and replaced by a different Cole - he's just as wonderful, but there are times when we miss things he could do before, or miss the idea of things he could have done without having cancer. We really wanted an Alabama football player. But, hey - if he follows his dreams of playing the drums, maybe he'll be in the band at Alabama. That's not so bad, is it? I think not!!
Lisa
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