Making Magic


This is for you, Colleen.  You never let me stop believing, even when we were given the worst news imagineable.  You made all sorts of magic for me and for Ty, and you still do.  Thank you for your pep talk yesterday.  Some day I will take your advice and let go of the fear, but I just can't do it yet.  I try!  Keep sending me your magic and it will happen :)

Most of my sleepless nights revolve around the lingering fear.  In addition to fear, I have a heavy guilt for being happy over the past four months.  At night, I pore over stories on facebook and caring bridge.  I know I promised I wouldn't do this anymore, but I keep doing it!  I guess I am part of a world now that I can't escape and I don't want to escape.  My eyes have been opened to just how many children are suffering with pediatric cancer and I need to know their stories so I can think about them and pray for them.  I don't connect on a personal level because I am simply not strong enough to help, but at least I feel like I'm doing something simply by being aware.

When I hear about a child's recurrance after remission, I begin to drown in the greatest depths of my fear.  It's my worst nightmare.  When I hear about a family's devastating loss, I am hammered with tremendous guilt.  And anger.  I get so angry.  Kids just shouldn't get cancer.  There needs to be more research, more treatment options.  When is a cure for cancer going to be found, this is ridiculous!?!?

These feelings I harbor are fierce and they are vicious.  I am so blessed and so lucky.  Sometimes I need to remind myself that these days are real, that Ty is getting better.  I lived in a burning hell, but somehow I got out.  My baby is still here with me and I believe with all of my heart that he will live a long, happy life.  Reading about all of those who have lost their own beautiful and most special child makes me realize, "How dare I ever feel sorry for myself!  For what I've been through!"  Who cares!  I'll always hate that Ty had to suffer, but who cares about my sorry self.  I am a better person for all of this.  If I were to lose him, I don't think I could ever be happy again and I would simply want to die.  The constant worry or fear of recurrance sits in my stomach 24 hours a day. 

First and foremost, I despise the thought of Ty having to suffer like he did ever again.  I worry about that more than I worry about how I would survive without him.  I have told God that he can take my arms and legs and abandon me in the woods to live out the rest of my life alone and helpless... I wanted it, I begged for it... as long as Ty could survive and be happy again.   I guess it was easy for me to make that plea because if I lost him, that's what my life would be like anyway. 

Tonight I am praying for all of these bereaved parents.  How incredibly sorry I am. 

Comments

  1. AnonymousNovember 30, 2011 at 5:25 AM

    Praying, praying, praying...

    ReplyDelete
  2. AnonymousNovember 30, 2011 at 8:31 AM

    I am praying for Ty and for all of the other sick children everyday. As a mother I cannot imagine losing one of my children and I know that you have to struggle with that fear every day. I pray that you can find some peace and happiness as well. God knows you deserve it. You are an amazing mom and an inspiration to all of us. Thank you again for sharing your beautiful boy's story with us.

    Ann from Buffalo

    ReplyDelete
  3. Susan LevyNovember 30, 2011 at 4:58 PM

    Raw and honest, Cindy. You are an incredible human being, being brought to admit to the basic of all basic fears . Loss is part of life, but unnatural loss is simply beyond our realm. You have been tested and confronted more than any one should be, and you deserve to feel whatever you feel.. conflict, anger, sadness. But your metal holds strong and will hold strong...you have proved that many times. You won't give up...I know it...

    ReplyDelete
  4. Sista GirlNovember 30, 2011 at 8:02 PM

    Cindy you need to think about compiling your posts into a book.....your honesty through the joy and pain is so compelling....you could help so many people see to the other side of their own nighmare........and find the light along the journey......<3

    ReplyDelete
  5. stellau1November 30, 2011 at 8:33 PM

    Cindy, ur words fill my head, tears fill my eyes and love fills my heart. I know wat u mean about finding urself reading other children's stories. Ty's blog was the beginning of my journey w/ pediatric cancer. Ur writings opened my eyes, ears nd heart for children all over who I now pray for nd support in any means possible. I want to thank u for that.

    All my love always,
    Elaine

    ReplyDelete
  6. AnonymousNovember 30, 2011 at 11:29 PM

    Cindy:

    I read your post today and my heart simply bleeds for you. I think I can speak for all the Ty Team fans when I say, we are connected as well. I find myself literally not breathing when I read the posts of bad days or days when Ty has a scan. All you have gone through has caused me to get more involved in contributing to pediatric cancer research and wear a gold ribbon in September. To some degree I understand you feelings about being afraid to be happy, afraid to let go of the fear, afraid to put one foot in front of the other before checking to see if the ground is firm. Though what I went through with infertility for over 10 years to get just one baby has no comparison to your hell, it was my hell. A hell I continue to live today even after finally getting a baby. I still morn for all those babies I lost and Doctors seemingly thought it ridiculous to morn, I still have a hard time being in a room with a pregnant women as I would give my soul to have another. I find myself avoiding my OB office in case there are pregnant women and I sit in the furthest corner so I do not have to see them rubbing their bellies. I want to dislike anyone who gets pregnant and has more than two children already as I feel like they are taking an opportunity from another without a child, and I fear to the point of sometimes having a hard time putting one foot in front of the other of something happening to my little guy. I am only now after 4 years able to somewhat read books about grieving infertility and the loss of a baby. Before now I was angry. I wanted my feelings to be felt by no other and own them. Thus, you are not bizarre, there is nothing wrong with you, this is your journey and in your time you will slowly let go. Let God heal you. I was so angry through my process I walked into church, looked up at Christ on the cross and said not so kind words. I knew those arms were not for me and felt abandoned. I still fight the feelings of abandonment but have come to ask forgiveness and have to remind myself daily that God has given me a gift that only He knows how long I can put my arms around but my love will be forever. Sorry this is so long, but, I wanted you to know that you are okay, your feels are real. I want you to work toward letting God do his work, whatever that may be.

    ReplyDelete

Post a Comment

Popular posts from this blog

Anything but cancer

Image
Cancer is not welcome here.  It can never, ever, ever, ever, ever come back.  As I mentioned yesterday, Ty has been showing some physical symptoms that we haven't seen in a long time.  Please, God, don't let it be cancer again.  Anything but cancer. I spoke to Ty's doctor first thing this morning and he believes the increased weakness we are seeing on Ty's left side is not related to new cancer growth - but that doesn't rule out the possibility.  He feels that Ty is suffering from spasticity, which is becoming more visible now only because Ty is getting stronger.  As Ty's muscles begin to regain mass and tone, the neurological weakness on his left side is becoming more noticeable.  This spasticity is likely permanent, but also treatable with continued therapy.  When I spoke to his physical therapist later today, she agreed that it would explain what she is seeing, and then she reassured me that walking again is still a highly...
Read more

Our baby is finally free. Rest in peace Ty Louis Campbell.

Image
Ty Louis Campbell is gone, but his story continues.  This is our promise to him.  His impact on the world around him gives his short but inspirational life such meaning.  His soaring spirit will continue to fuel a fire in our hearts, and strangers around the world will continue to fall in love with the little boy who fought so valiantly.  The little boy who hurt so much, but maintained a bigger, brighter smile than the healthiest of children.  Ty never did break his fever.  He never really woke up.  Not until he decided to leave this earth and fly freely among the clouds.  At that very moment, he was awake.  He had returned to Lou and I to say goodbye.  To say our hearts are broken would be like saying it tickles to have your stomach ripped open with a spoon.  I went to bed last night with so much worry on my mind, but I was able to fall asleep because I was calmed by the fact that in his semi-conscious s...
Read more

Our aching hearts

Image
My face is swollen.  My eyes are heavy.  I have been crying for what feels like an eternity.  But in between my tears, I have an overwhelming sense of freedom.  Today we were told that there are no more treatment options for Ty.  That his MRI Saturday night shows progressive lepto-meningial disease in three different areas.  Lou and I decided against surgery to fix Ty's shunt, and I am finally free from feeling responsible for whether or not he lives or dies.  Ty is in God's hands. No matter how many times I swore that I leave Ty in God's hands, I was always clinging onto him with every ounce of my being.  Researching.  Fighting.  Begging.  Doing anything in my power to find a way to save him.  Finally, I have exhausted my options and I am letting go.  I may be kicking and screaming, but I am still loosening my grip because I know that I have to.  We have tried so hard, for so long....
Read more