Thursday, September 22, 2011

Skyler has been doing so well.  He continues to be such a happy little boy and makes me laugh and smile everyday.  He has been eating wonderfully and has actually put on a little more weight.  He now has a little meat on his legs and bum and doesnt look like a starving child anymore.  If you didnt know he was battling cancer you wouldnt be able to tell at all just by looking at him.  He looks SO good.  He also has a heart of gold and keeps telling me all the time that he thinks Im the best mommy he has ever had.  It melts my heart everytime.

These past couple of weeks have been really weird for me though because I keep thinking Im forgetting something or think that we need to be somewhere.  Im so used to driving up to the hospital everyday that not having to has thrown me for a loop.  We have stopped his meropenem so I only have to hook him up to an IV med once a day, which is really weird also.  I keep waking up in the middle of the night and panic thinking I forgot to hook him up but then remember I dont have to.  Its also weird for Skyler too.  He keeps asking me "Uh mom, arent you supposed to start my infusion now?"  Its so nice to be able to tell me no and to hear him say "Sweet!"

One thing that has been super frustrating these past couple of weeks is that I have started having really bad anxiety attacks.  They started out just when Im driving but now they happen when Im at the store too.  They have become more and more frequent and its been so hard getting anything done.  I have no idea whats triggering them because I love driving and I love getting out and going to the stores.  I physically get really sick and feel like I have to pass out.  I have always been anxious when Im around big crowds but I have never experienced anything like this before.  I know I have been under alot of stress and havent gotten enough sleep but this is the best Skyler has been since diagnosis and we are finally in a good spot so Im really confused at whats causing them.  I only bring this up because I want to share how great of a little caretaker Skyler has been for me.  He knows when I am having them because I either have to pull over or turn right around and go home.  The other day when I had a bad one he said "Mom Im so so sorry you are sick, I wish I could take it away from you."  He also told me to go lay down and then went and got me his most comfy blanket and put it over me.  He also went and got me a drink of ice water and a straw and also a Popsicle because he said those things help him feel better so they will make me feel better too.  Then he said "Mom I hope you feel better soon because you deserve it."  He is the sweetest little boy and has taken such good care of me.  I am the luckiest mommy in the world to have him as my son.  He knows all too well about being sick so he is very sympathetic and compassionate to those that are sick too.  Whenever he sees a picture of his cancer buddies getting chemo or sick in ICS he says he wishes that he could make them better.  He knows more than a five year old should ever have to.


13 comments:

Lace said...

that is such a sweet family picture!

Shaylynn... a girl, a story, a blog said...

What a sweet little caretaker you have under your belt.

I know a little (A LOT) about anxiety attacks. I know this is going to sound ridiculous, just make sure you are drinking enough water, and not sleeping enough can trigger them too. Just breathe, breathe, breathe.. and laying flat on your stomach helps too, it regulates the breathing.. and if you are having one and someone your size is with you, make them hug you really tight.

Just trust this stranger, who thinks you're Skylers superhero, and an example to all.

Erin said...

I'm so happy to hear that Skyler is doing so well in maintenance!! This is what we were hoping for, and it's great to hear that things are finally settling down for him.

And what a compassionate boy you've got - he learned it all from watching his mama.

jessican said...

Skyler is such a sweet boy. I've enjoyed reading about your journey, and it makes me so happy to hear he's feeling better.

Shaylin said...

I have been following you and Sky for a while.. (Im sorry that sounds so creepy.) But you guys are BOTH amazing. :) I seriously love seeing updates about him and how well you guys are!

This is really REALLY weird, but last month, I broke my back. PLEASE do not get me wrong, I am NOT comparing my broken back to cancer in ANY way. I just wanted to point out.. I broke my back and for the last 4-5 weeks I have been laying flat on a bed, and going to doctors appointments. Getting Xrays, CTs, and IV's. Now that I am on the mend (which is what the goal has been this whole time) I find myself FREAKING out. This last month, the doctors office and hospital has been my "life" and my "normal" I am really struggling getting back into my normal life and routine. And it almost makes me scared and sad. I got so used to what was happening, that now it seems scary that the doctors are letting me start doing things and STOP seeing them.

Maybe this is sort of how you are feeling? I can only imagine what you feel. One thing that helps me is knowing that I am not alone. And that the only way NOT to feel this way, is to force myself into the things that scare me. :)

You guys are both awesome and I hope you both are doing AMAZING.

Brandi said...

Skyler amazes me every time I read your posts. He is such a tender, kind, sweet little guy. He is learning all of this from you. You are both incredible people.

Chelsie said...

And now you guys have made me cry. That is simultaneously heart-breaking (that he even has any understanding of what you're going through), and heart warming.

What a sweetheart.

Again, I'm so sorry you guys are dealing with this. I hope you're able to figure it all out. It kind of makes sense. Before now you didn't have the luxury of having a panic attack. It is probably something very similar to PTSD.

You are such an amazing woman and mother. And Sky is such an outstanding kid. I'm so glad he's doing so well!

Tonya said...

I am so glad that Skyler is in the place that he is right now. Both of you deserve this so much. I think, and again just a thought, that the anxiety attacks are because you are creating a new "normal". Your lives are changing, routines are different, schedules have changed, the people whom you have gotten to know so long, are no longer a fixture in your day to day life. Which this is a great thing, but it still is going to require time for you to adjust. You are lucky to have Skyler there to help you through this. I hope that as you discover your new normal, the attacks will subside and you can feel wonderful about the direction you are now heading. We will be thinking and praying for you both.

Amy Young said...

I am so glad Skyler is good. I pray for him so often. You are both so amazing! Just to offer a little bit of advice...the feelings you are feeling are totally normal. My son was very, very sick and in the CICU for 5 months on life support. He wasn't supposed to make it, but he did and so afterwards I thought I would be just the happiest, most free person every but I wasn't. It has been 1 1/2 years and I still have panic attacks...not quite like you describe but still HUGE anxiety. I have thought a lot about it and I think it boils down to this for me, and for you too. For so long you wondered if your child would live, and he did but for some reason there is this feeling of waiting for the other shoe to drop. Things have gone so bad for so long, you are afraid to be happy. No mother should have to feel this way, but I think that all mothers of sick children do feel that way. I pray that you begin to feel better, and you will!!! God bless!

Emily said...

You are one of the strongest people I've ever heard of (I say heard of because you don't know me, but I've been following your blog for a while). No wonder Skyler is as incredible as he is. You have both been through so much and have been so amazing through it all. I hope you get relief from your anxiety attacks and Skyler continues to do well!

Anonymous said...

I am glad that you have a great caretaker in your little boy. He is the sweetest boy ever.

I remeber when parker started maintenance and the fear of not having him seen weekly or every other week really scared me. It does put a lot on your shoulders, not like you haven't had a lot put on them through the last year. I hope things get easier for both of you. You deserve it.

Nicky said...

Crystal, you are amazing. I know what it's like to have the anxiety attacks. Just know, THEY SUCK! The only thing I have learned is, deep breaths and only try to work on things you CAN change. Do things for yourself. I look up to you, you are amazing! You gotta keep healthy yourself healthy so you can keep Sky healthy. He is amazing and he has learned so much

susi and adam said...

That boy is truly adorable. I hope you know how many people love you guys! Don't personally have experience with anxiety but seems completely understandable considering all that you have been through. Your body is finally getting a little chance to express the stress you have been experiencing. Much love and prayers to you guys.ps so cool about the chuck e cheese room (and you don't have to deal with the obnoxious crowds and music! Awesome!!:)