Monday, May 23, 2011

The good, the bad and the ugly

THE GOOD
As I've said over and over again, Ty's journey brings out the absolute best in people.  If I were to make a list of the random acts of kindness that have been extended to our family, it would take up pages upon pages upon pages.

Saturday night was certainly no exception.  Lou grew up in Mahopac, NY, and a bunch of his high school friends hosted an amazing benefit to support the Mahopac "Relay for Life" in Ty's honor.  I never thought we could pull it off, but Lou and I were able to attend thanks to his wonderful parents who bent over backwards to entertain our demanding little boy while we were out.  As you all know, Ty likes to "party all night," and that night was no exception.  I don't care that Ty was up until 1AM, it was worth it for Lou and I to get out for a few hours and socialize.  Thank you so much to all who attended the event at Red Mills Pub, with a special thanks to Jackie, Sally and all of the others who helped make it such a success.  We were so honored and if anyone has pictures to share I would love to post them.  

We plan to attend the relay on June 4th if all is well with Ty, and we have our fingers crossed that he may even be able to participate in the opening "Survivors" lap.  I am really looking forward to that.  I think it will be very special for Ty and all of us.  Ty is feeling good.  His pain meds are reduced, his nausea is under control (for the most part), and his willingness to exercise and practice is improving.  And, despite his ups and downs, he definitely laughs more easily these days. 

THE BAD
Not sleeping is not good for any of us.  On top of that, Ty has been so incredibly emotional I'm not sure how to help him sometimes.  For example, today I was driving him to the toy store for a special treat and at one point he just screamed  the most piercing scream from the backseat I almost swerved off the road.  In a panic, I asked him what was going on, what was wrong, and he could barely speak because he was crying so much. Finally, I calmed him down and he answered me only to say... "I dunno what wrong wit me.  I just sad!"

I don't think I have to explain to you all how that makes my heart hurt.  In addition to feeling sad often, he is also physically agitated.  He complains that he can't get comfortable all day long, and it's as if he wants to jump out of his own skin.  I called the family psychiatrist at Sloan Kettering to see what he thinks, but he had little to offer right now.  I need to wait and see a while before he wants to prescribe anything to address his sleeplessness and his anxiety.  How sad is it that my three-year-old has anxiety problems? 

Sometimes when he is feeling this way, he reaches out his strong arm and I know he just needs a hug.  That right there is what makes it all okay.  I can't wait until the day he can wrap both of his arms tightly around my neck again.  I want to pick him up and swing him around into the most giant hug imaginable.  Like in a commercial when an adult lifts up a small child into the sunshine.  Some day. 

THE UGLY
It's been a long time, but I had a complete meltdown yesterday.  It started off perfectly fine.  Our great friends from Long Beach came to visit for the day: Anthony, Yasmine, and their children Eva and Theo.  Eva is Ty's age and they have been the best of friends since they were born.  Same goes for Theo and Gavin who were born just about 10 days apart.  We had so much fun together and it felt so good to have them over and catch up.  We love them so much.  Ty also sat at the kitchen table in his new booster seat and he made play-doh spaghetti! See picture.  He was so happy and Gavin was beyond ecstatic to play with his buddies.  I typically keep Gavin in a complete bubble because I'm afraid of germs, so to see him running around with kids his age was priceless.  I don't think he stopped laughing the entire time.


My meltdown didn't happen until much later that day, when all was quiet and I was trying to do the dishes while getting Ty's medicine ready for the night.  He was absolutely relentless.  He just kept crying for me, and screaming whining.  My patience was at its utmost limit and finally I reached my breaking point.  "What!"  I screamed after the bazillionth time Ty called for me... "What do you want from me!?!?!??"  I yelled so loud and I slammed down one of his books that I made him cry even louder.  Lou told me to go for a walk and I just ran upstairs to the spare room where we put Ty's toddler bed until he gets better and we can move him upstairs.  His tiny little bed is the same size as a crib mattress and it is just the most perfect size for curling up and crying.  I have done this before.  I don't know why, but I have always been drawn to his little bed whenever I want to feel closer to him and how things used to be.  I cried and begged.  I told God that he could take my arms, my legs, every piece of my soul.  I was begging with every ounce of my being, but I felt so useless because it's all already His.  I had nothing to offer... nothing to bargain with. 

After a good, long cry, I felt better.  I came downstairs and explained to Ty in the simplest terms why I think we should both apologize.  Then I said, "I'm sorry" and he made a sad face like he was just going to burst out crying... but instead he said "I sowwy, too."  Melts my heart and steals my breath.  He is simply the best boy in the world. 

This isn't getting any easier, but the Campbell's will continue to roll with the punches.

7 comments:

  1. Everything will be OK! I'll be thinking of your family today and wishing for more good times than bad. Prayers and hugs from Canada.

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  2. Stay strong. I cannot even begin to imagine the struggles you all go through, but so many people are pulling for your family and praying for you. Lots of love and hugs sent your way!

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  3. Gosh how I wish I could give you a hug and tell you that every mother out there has experienced the frustration although on different levels. It's OK!! A good cry is exactly what you need and if you lash out occasionally, Ty will not hold it against you.

    Your family is so strong and it shows in Ty's ability to continue to "kick cancers butt". He has to answer our prayers, look how many times He has already. I BELIEVE in you!!!!!

    All my love,
    Elaine

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  4. Cindy, you simply would not be human without a breaking point. You have crammed so many feelings, stress, anger, frustration, sadness, happiness and trying to live every moment to the fullest it has to take a toll and it has to come out. Every mom has their break point- BELIEVE ME. I struggled for over 10 years to have a baby and I feel so guilty when I reach my breaking point but feel so much better after it is out and I can continue doing about 50 things at one time. The melt downs pass and are forgotten but the little hugs whether one armed or two are lifes most precious treasures. Your family has touched my heart and my life. You and Lou are absolutely incredible and I know you are told that all the time. I suspect you do not feel incredible - but you are. You walk in ugly shoes and you manage to keep walking because there is a day you will be in diamond studded steletos. God bless you Cindy. I pray God continues to give you strength. One thing I learned through infertility and loss of babies is it is okay to be angry at God. He loves us anyway and I later realized He was closest to me in those times. God is with you and He is holding Ty to give him strength to fight this fight. In my heart as I pray for Ty, God has left me a message that Ty will beat this.

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  5. Someone left a comment "God has left me a message that Ty will beat this." OH GOD PLEASE PLEASE PLEASE HEAR THIS PERSON AND PLEASE PLEASE PLEASE let it be true. Dear God please give Ty a miracle and let him beat this hideous cancer and finally be happy. I cry for Ty and your family everyday as i pray to God for a miracle. You are truly a supermom and Ty is truly superTy xoxoxoxo

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  6. I have no idea how to ease your pain. Only God can do it. And I trust Him, that He is.
    Things are not normal, but no one has normal. You ALL are precious, we love you and we ALL wish we could take your pain away.

    We will continue to pray with you asking God to continue His healing process in His terms and no other. We will pray for your patience and peace to fill your heart and soul.

    The miracle is in the making be sure. Flip flops, flip flops, flip flops, flip flops, every second Ty's body is giving the fight of his life. Remind him you are there with him always and remain strong for him! Crying is a healing process, may this blog help you know you are NEVER alone.

    We love you!

    Remember:
    “Be patient toward all that is unsolved in your heart and try to love the questions themselves. Do not now seek the answers, which cannot be given you because you would not be able to live them. And the point is to live everything. Live the questions” - Rainer Maria Rilke

    "Have patience with all things, but chiefly have patience with yourself. Do not lose courage in considering your own imperfections, but instantly set about remedying them - every day begin the task anew." - Saint Francis De Sales

    If you begin to understand what you are without trying to change it, then what you are undergoes a transformation. - Jiddu Krishnamurti

    No road is too long for him who advances slowly and does not hurry, and no attainment is beyond his reach who equips himself with patience to achieve it. - Jean de La Bruyere

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  7. AS tired as you are , you and Mely still look like "knock-outs" :-) I hope that you can have a wonderful day -- it is so sunny and the sky is so clear . finally after all of this rain..... please let it not come back. I know that Ty is tired but I could just tell when you were holding him how much stronger his body has gotten and how much he's grown.
    Hang in there my friend. :-)
    p.s. the kids want bracelets !!!!!

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