Sunday, January 15, 2012

Take lots of pictures

Gavin’s first day of school was great.  He wore his new skater shirt that he picked out (because of the red – his favorite color) and he was so handsome.  When I was talking with his teachers before leaving, he made himself right at home among the toys.  He actually called across the room “good-bye!”  I was shocked and sad.  He is growing up so fast, and I feel like I lost so much of that precious baby time with him.  In fact, whenever I snuggle him and call him my baby he corrects me.  Like the other night… he had a stuffy nose and I was holding him saying “my poor baby” and he said “No!  Your poor big boy!” 

When I was walking back to my car the tears startled me.  I didn’t expect that at all, but it was uncontrollable.  I got in my car and sat there sobbing, loudly, before I was able to start the car and drive away.  I cried a good, heavy cry.  I felt so ridiculous because I was crying almost as hard as I’ve cried over Ty’s cancer!  I’m actually embarrassed to admit this, but it’s true.  I drove off having no idea what to do with my free time.  Ty was at home with the babysitter and I didn’t have to pick up Gavin for over an hour.  I tried to go to the store for a present because we had a birthday party this weekend (happy first birthday Baby Jake) but I got lost!  I swear, I was just swimming in sad/happy thoughts over my boys growing up too fast that I went the wrong way for miles!  Again, so embarrassing.  I ended up spending the majority of my free time driving through windy roads, wasting gas and getting lost in my crazy head.  In the end, I got a quick manicure – blue with sparkles for Ty.  Next time I will have to get red for Gavin, but that felt too normal, and I was feeling anything but normal.     

Gavin really is becoming a big boy. Now if I could only get him out of his diapers.  We had no problem getting Ty out of diapers when he turned Gavin's age (2 years, 9 months) but Gavin is another story. The only way I can get him to even sit on it is if he is fully clothed, but I guess that's a start. Trying to get him used to the idea, anyway.

We had a nice weekend.  Ty enjoyed himself at baby Jake's first birthday party, where he had fun making arts and crafts and reviewing the assortment of candy that was given in his goodie bag.  Here he is eating his famous square pretzels. 

 Gavin had fun, too, in his own crazy way. 

I spent tonight watching a bunch of old videos on my computer.   I guess I am still being a sap over how big they are getting and wanted to hear their voices and giggles when they were younger.  I decided that I didn't take enough videos, at all.  There's never enough - I kept wanting more and more clips of them before Ty got sick.  Of course I enjoyed watching them, but I also ended up torturing myself with each one as Ty got closer to the age of his diagnosis.  The usual... I look for signs of cancer.  I wonder if we missed something earlier.  Thoughts swim around in my crazy head, like... "did he have a brain tumor when we were at the beach that day?"  As if any of that would have made a difference. 

One night, after a visit with our pediatrician, I videotaped him trying to sleep so that I could better explain his behavior.  He was crying so much in the video.  He told me he just wanted to sleep.  He wanted me to hug him.  I had NO IDEA that he was in so much pain. I couldn't figure out what was wrong with him, but I thought maybe he was tired, cranky and extremely restless.  I never imagined that he had a f-ing brain tumor pressing against his brainstem.  That when he laid down to go to sleep, the pressure became unbearable which was why he only had issues at night.  I took those videos to show to the therapists at a sleep clinic.  I'm so glad we decided to just take him into the emergency room.  Funny enough, Ty slept perfectly fine at the hospital.  Everyone must have thought Lou and I were nuts.  When I think back to those first few days in the hospital it seems like it was a lifetime ago.  A whole different world that we lived in before we learned about Ty's cancer.   
We were scheduled to go to the hospital to start up his Avastin infusion this Wednesday, but we bumped it up to tomorrow since Lou has off.  His doctor also wants to do a quick MRI of the brain to make sure everything looks good in the brainstem area and Lou, of course, wants to be there for the results.  This is just a follow-up MRI to see how the bleed is healing, but each and every MRI is scary nonetheless.  Please keep him in your prayers and we will be sure to post an update after our day at the clinic tomorrow. 

XOXO.  with all of our love.


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  2. Cindy & Lou,

    Gavin is so cute! I figured he wouldn't give you a hard time and cry when you leave. He seems very independent and quite outgoing! I'm sure he had a great time, and I know it is hard to accept that they are growing up fast, but they are.

    I can't imagine how you feel with Gavin, due to having to always deal with Ty's illness. But I will tell you, you have nothing to feel guilty about. You are only one person and cannot possibly be in two places at once. You were where you were needed most at the time, and there is absolutely nothing wrong with that. Kids have no concept of time, in my opinion. Your boys know you love them. . .

    Anyway, just a thought I had before. I know that you have this blog, but have you ever thought of a book, or maybe a memoir? Just your daily struggles as posted here just in book form. Maybe have all the proceeds go to St Jude, or the Pediatric Cancer Awareness or the Guardian Brain Foundation (not sure if I got those right) I know I would definitely buy a copy and I think you would be able to help so many people whose children are struggling with cancer. Ty's story is incredible and provides so much hope for parents dealing with the same struggle. Just something I thought of while typing this. God knows, its not like you dont have enough to do! LOL! Write a book in your free time! What free time! :) Sounds good though!

    Glad to hear that Gavin loves preschool and didn't even bat an eye to you leaving! Also loved the pic of Ty at the birthday party! He looks amazing!

    As always, thank you for your continued sharing. This post has brightened my day! I know you were not so happy, but guess what, parents crying on their child's first day of school is completely normal! I followed the bus for a month when my son started kindergarten! :) Its normal life, and it is so nice to read about!

    Joy Marielle
    Baltimore, MD

  3. The normal life posts are so beautiful. Thank you for sharing.
    Thinking of you guys from up in Canada.
    xx (That's a kiss on each cheek like the French do here)