Monday, July 11, 2011

What I wouldn't do

We had a pretty good day today, meaning Ty was feeling okay and he ate well.  He was really cranky and he abused me for the majority of the afternoon, but I think I kept it together pretty well.  It just breaks my heart that my typical day with my three-year old revolves around taking him out to the supermarket at his unwavering request only to have him whine the whole time, and carrying him around my house for what feels like hours on end.  My back is breaking.  Every time I put him down, he says he wants to "pick some-ting" to eat... which means I need to pick him up again and take him to the cabinet with the same options he looked at just minutes earlier.  It is similar to the hospital days where he had me reading him the cafeteria menu over and over and over again.  He says he's hungry, he wants to eat something, but he hates all of his options and yells at me if I make any suggestions. 

When Ty isn't feeling so hot, he cries and whines so much when he doesn't get his way.  Even if he does get his way, the tiniest thing can set him off.  It's so hard to navigate that line of parenting where it is fair to punish my poor baby who has already been through so much and clearly suffers a lot of emotional insecurity.  We have our fair share of time-outs where he goes in his room to cry it out until he can calm down and re-join us, but I am very selective as to when I will actually use it.  I have also mastered the "count to five" technique, so when Ty is leaning more toward spoiled rather than giving me a justified cry, he cowers down by the time I count down to three.  Sometimes two, but it works. 

I realized today that sometimes the kid just needs some Tylenol.  Geez, I get headaches every day and I don't even have cancer.  So, today when he was especially cranky I gave him some Tylenol even though he proceeded to kick and scream telling me me he doesn't need medicine.  You know what?  Within 15 minutes he was the laughing, smiling boy that we saw yesterday and it lasted for the rest of the day until bedtime. He became a joy to be around, and what a relief it was for all of us.  It made me feel bad for getting so stressed out over his bad behavior earlier in the day because I realize he has so much going on, physically.  In fact, we were even able to go out on a date around 3PM, which is one of my favorite things to do with him.  We stopped by the local pharmacy to pick up a prescription and he told our pharmacist that he wanted a steak!  I was so excited to get some hearty calories into him, I whisked us off to the nearest restaurant/tavern and he was so good the entire time.  Apple juice and filet mignon for our SuperTy.   

I hate that Ty still has days with pain and discomfort, but a little Tylenol is no big deal.  It isn't morphine, and that's amazing considering how far he's come.  He also threw up in the middle of the night last night.  Can't explain why, but I'm trying not to worry about it too much.  I think he just has a weak stomach and he felt kinda yucky.  This intermittent vomiting over the past few days is nothing compared to what we've seen in the past, so I am trying very hard not to let it worry me too much. 

Ty's first MRI was on August 11th, 2010.  One month from today will mark our year anniversary of fighting this disease.  I don't think any doctors reviewing his case thought we would come this far.  So, HA!  Please, God.  I pray it is all worth it.  I will do whatever it takes, just tell me what to do.   I'm sure you've seen the movie Braveheart. At the end, when Mel Gibson gets tortured with a devise that resembles a huge fishing hook? I swear to you that I would willingly get up on that table if it would cure Ty. I would - RIGHT NOW! Even though the physical pain would be unbearable, it would be over after a short period of time... The emotional pain I have been dealing with over the past 11 months has been far worse.  I am excited to begin his new course of treatment and I am just so hopeful that Ty will continue to beat the odds.  It has been a long and exhausting road, and I can't wait to tell you about the rainbow we find in the end.  Some day.  Hopefully soon.     

Goodnight all.  Thank you for your love and support.  XOXO from Ty. 

5 comments:

  1. Cindy I have twins who are autistic and I completely understand the frustration of trying to figure out if an outburst is just a fit or if there is truly a reason for it. I hope you realize that a lot of this is perfectly normal behavior for Ty's age. God knows he has been through more than anybody should ever have too but try to find solace in the fact that we all deal with similar situations and our little fighter is being so NORMAL.

    You are a wonderful mommy and in the end Ty is only going to remember all the things you have done for him. The crying and unhappiness won't matter to either of you because he will be so strong and healthy! I believe this with all my heart.

    Here's hoping today is a better day and that all goes smoothly. You and your family are never far from my mind. I'm always sending positive energy your way. Keep fighting SuperTy!!!!!

    All my love,
    Elaine

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  2. You have been through so much. More than most people will go through in their entire lives. Don't ever doubt that you are doing an amazing job and that you are a wonderful mom to Ty. He is lucky to have you. I can't imagine how absolutely emotionally draining it must be for you at times but you always seem to have a great attitude. Don't feel guilty for having some bad days. I will continue to pray that Ty gets his rainbow. He is such an inspiration to all of us.

    Ann from Buffalo

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  3. I agree with Elaine. I have twins who are about the same age as Ty and they have outbreaks all the time and they haven't suffered thru anything like what Ty is going thru. Picking out what they want to eat can drive me insane with them constantly asking to be held up to see what their options are and then saying I don't like any....or pick one for me...then when you do they freak out. It's typical 3/4 year old behavior.

    My kids also complain and whine about going to the supermarket etc. So baste in these outbursts from Ty and remember these can be normal behaviors and not just because of the cancer.

    Praying for Ty! Keep up the great attitude! FIGHT FIGHT FIGHT!

    Deena from NJ

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  4. I have a son right around the same age as Ty and trust me the slightest thing can set him off for no apparent reason..
    I pray you will find the gold at the end of the rainbow...
    Just know that I go through my day between running a business and my 4 children and will of all sudden stop and think..I have to go check on "my" little man.. I then run in and read your blog.. Always keep in mind there are a lot of people even though you don't know us fighting this fight with you for this amazing little boy
    God Bless and keep your chin head..

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  5. I saw your story on the Yorktown Patch and I just read this blog entry... all I can say is I pray for your baby to have a long happy life... and to beat this cancer. I pray for you and your family and little Ty to have strength and faith. You are an amazing mother to that little boy. <3 .

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