Saturday, October 17, 2015

"I am free and so are you"

On this very night three years ago, I took Ty’s temperature for the umpteenth time and it read 104.9.  Under his shirt and his back were burning up, yet his face felt cool, his hands and feet warm but not burning with fever.  I knew what this meant, but I swear in my heart I still held on to hope that he might recover.

He had been asleep for hours on end.  I spoke to his doctor, we talked about how the only way to try and diagnose and treat the fever would be to bring him in – but we wanted him home.  We promised we would never take him back to the hospital again, and no matter how desperate I wanted to believe that he would wake up the next day, I also knew that he was so close to dying, any attempt to save his life would be in vain.

I was up early the next day.  Ty still sleeping peacefully in my bed.  No sign of waking.  I remember saying to my mom, over coffee, “if he doesn’t wake up soon, I don’t think he ever will.”  To actually hear myself say those words, it was like someone else was speaking them.  I was so torn between wanting to believe in his miracle, and knowing that he was leaving us.  It felt like such a betrayal to admit what I knew to be true; to say it out loud like that.  But still I prayed.  I still hoped that somehow, he would wake up and speak to me.  That he would spring back to life and we could praise God for his mercy. 

I still hope and pray for that impossible dream to come true every single day.

As the day went on, his breathing changed.  It was hard to watch.  Each breath slow and quiet, but with each inhale his face looked strained - as if it was taking every bit of energy left in his body.  I wanted so desperately to talk to him.  I thought about whispering and telling him how much I loved him and how it was okay for him to leave us now… but I just couldn’t.  It wasn’t okay.  As much as I truly wanted him to be free, I couldn’t bear to let him go. 

The minutes rolled by and nothing changed.  I never told him, “it’s okay,” but when the minister came and prayed for our boy in the room with Lou and I, it was as if we all understood the finality of that prayer.  I thanked him and walked the minister to the door.  Upon re-entering the bedroom I saw Ty wake up for just a moment and I ran to him yelling to Lou, “Oh God, I think he’s dying. Can I hold him, I want to hold him?”   I pulled him into my lap and Lou wrapped his arms around us both and we just cried and told him “I love you” over and over and over again.  His eyes were open but staring off into the distance until they slowly closed again as he took his last few breaths.   That was it.  Just like that he was gone.  

Recounting that moment is one of the most difficult things I do.  Whether I relive it in my mind on sleepless nights, or write about it here… the act of remembering these details makes me so sick with grief.   I can’t breathe, my chest hurts, and my head feels like there is a giant inflated balloon causing the most unbearable pressure inside.  But, it is important and I think it is healthy for me to do this.  Tonight, I want to remember every single minute of my last 24 hours with him.  Tomorrow morning we will polish his statue and talk about how impossible it is to believe we have survived 3 years without him.  

There is a beautiful little boy named Kwesi who passed away soon after Ty.  He was eight years old and he told his mother upon leaving this world, “I am free, and so are you.”   

I think I hear him saying it in the whispers of the wind every now and then, and I hope Ty and Kwesi truly are free to soar!  I love the image I have of them feeling truly light and free.  It makes me happy. 

And although we may be free from the pain of watching our boys suffer, his mother and I will never, ever be free from the pain of losing them.    This grief will live with us forever, and I carry it with me as a reminder of my loss.  I have a love/hate relationship with my grief because it keeps my pain raw, it keeps the memories of my son close, and it inspires me to work so hard to some day change the outcomes for children like him. 

We hope you will continue to think of Ty and follow our families journey.  Thank you for your love and support.  Three years.  Where did they go?



34 comments:

  1. 3 years and forever in our hearts. Look at that beautiful smile!! All for Ty!! Love, Mellissa

    ReplyDelete
  2. Dear Cindy. He is only free from pain but never free from you. Ever! I remember reading three years ago that Ty was spiking fever. And then nothing. The next day there was no post from you and my heart sank. I tried checking every day I was hoping for a miracle.... And then I read about his passing. It was so hard to read. I read it again and again until I was hurting so much. My beautiful superhero died. It is hard to believe that we are three years without reading about his updates and seeing his smiles. I am in owe of your strength Cindy and Lou. I only with that you find strength to continue Ty's fight and help find a cure. I love you.
    Tatiana.

    ReplyDelete
  3. Forever in our hearts sweet Ty

    ReplyDelete
  4. I think of Ty all the time. To this day I cannot look at a ladybug or the puddles after a rain without thinking of him and of you and smiling. If every child was as loved as he was (and is), this world would be a much better place.

    Sending you all the love & light possible today.

    ReplyDelete
    Replies
    1. This is true for me as well! Every time I see a puddle whether I am with my kids or not, I at least stomp in it and think of Ty. He is an inspiration!

      Delete
  5. Dear Cindy and Lou, I too, remember checking your blog probably hourly and lighting candles and praying. I remember having this vision of a teenaged Ty surfing here in California and meeting you all when that day came. I refused to let go of the miracle. And I too, read your posting of his passing until I basically had it memorized. It took me a very long time for the facts to sink in. My grief was so deep and wide. At that time my grandson was 9. Since then he has taken a great interest in surfing. It was kind of out of the blue because we have no surfers in our family or circle of friends....I always smile and think it's Ty encouraging him on :) He has done surf camps and lessons. He has watched Chading Mavericks many times. And this Christmas Sant has a treasure hunt planned for him where he and his family will follow clues to Santa Cruz and he will find his very own surf board. And I feel Ty smiling down on him and holding him in joy and protection....I don't remember exactly where I got the notion of Ty surfing - your blog dreams or something Ty actually said - but they took residence in my heart and they live on. God bless you all, and, thank you Ty for being Satchel's surfing angel buddy xoxo

    ReplyDelete
  6. You are amazing! We will never forget him.

    ReplyDelete
  7. Oh Cindy, I do not know you but my grief for you is just so overwhelming. I was afraid to log in today as i knew there would be a post, a post that would break my heart for you. I can not imagine the hurt you and your family are going through each day, today moreso but I just want to say I think you are amazing and such a wonderful inspiration to all mums out there, myself included. Ty may be free from pain but never free from you, Lou & Gavan. Sending you so many many hugs from IrelandxxxxKatiexxxxx

    ReplyDelete
  8. Your family is in our thoughts today. Your grief is shared by so many. Fly High Super Ty!

    ReplyDelete
  9. Your family is in our thoughts today. Your grief is shared by so many. Fly High Super Ty!

    ReplyDelete
  10. Forever in our hearts. I think of superTy and his supermom often. Especially when the leaves are changing. And when I find a ladybug, see a hawk, splash in a puddle after the rain, see blue candy. He will always be an inspiration.

    ReplyDelete
  11. THinking of you all, especially today.

    ReplyDelete
  12. I cried with you 3 years ago and I do again today. I cried first when the fever came and then waiting until finally reading of Ty's passing. One image though that has stayed with me is when you told us of Lou sprinkling the water and sand on his little bare feet, at that moment I truly believe Ty was frolicking in the bluest of waters and the whitest warmest of sands. Free and full of pure light. I love your family. My thoughts and prayers are with you today and always. ♡♡♡♡

    ReplyDelete
  13. I cried with you 3 years ago and I do again today. I cried first when the fever came and then waiting until finally reading of Ty's passing. One image though that has stayed with me is when you told us of Lou sprinkling the water and sand on his little bare feet, at that moment I truly believe Ty was frolicking in the bluest of waters and the whitest warmest of sands. Free and full of pure light. I love your family. My thoughts and prayers are with you today and always. ♡♡♡♡

    ReplyDelete
  14. I remember this morning three years ago. Like I did every day I got on this blog to check on Ty. When I heard the news I just sobbed and prayed at my desk for awhile. Even though I never knew him I fell in love with him. You are so strong for sharing your grief with us so that the world can know Ty too.

    ReplyDelete
  15. Thinking of you, Cindy, and your family, knowing these two months are especially difficult. Wore my Ty shirt the other day ; It reminded me of his beautiful smile and the legacy he left behind. My youngest son is now 5 and it makes me angry/sad that you were robbed of these precious years with Ty.

    ReplyDelete
  16. Such an amazing smile, "he was always quick with a smile right?" <3
    Ty changed me forever. My heart has been heavy the past few weeks thinking of you Lou and Gavin. I believe Ty is soaring above with his friends, jumping in muddy puddles.

    (((Hugs)))

    Joy

    ReplyDelete
  17. My sweet, sweet friend. You are the bestest girl in the whole world and I wish you never had to suffer this tragedy. Remember that Ty communicated with you he had a good life! Can this possibly make sense?? YES! One day we will each be set free and no matter what we suffered on earth, we will not feel any of the pain. Until then, my sympathy is never ending for you and I wish I could take it all away. I try and try to think of a way. I love you so much.

    ReplyDelete
  18. I do. I do. I continue to think of Ty and of you and your family, especially today. And how I wish you could have just a few more moments with your angel. My heart feels so heavy for you

    ReplyDelete
  19. UGGHH Three years?? How did that happen? I think of you often and continue to read your blog. I also think of Ty whenever I see a ladybug and when I rains I take my kids outside and we play in honor of him! My Lillie always says I love muddy puddles and my heart tinges because I automatically think of you and Sweet Ty. I continue to keep you all in my prayers

    Gabrielle Colletti

    ReplyDelete
  20. much love to you always....you are truly an inspiration and Ty's spirit continues to live strongly thru your love in all you do <3

    ReplyDelete
  21. Tys legacy will live on forever . I Wil never for get Super Ty . Much love to the Campbell's on this day .

    ReplyDelete
  22. Cindy, thanks for sharing this post. I often wonder if you know how many lives Ty and you have touched. I think of you often from across the country, never meeting you anywhere but in that special "mom spot" where we don't understand your pain, but pray fiercely and love you deeply. Thinking of you all.....

    ReplyDelete
  23. As I was reading this I noticed the shape of Ty sitting in the words and felt like he was sending you a sign and was with you as you wrote this. Second to last paragraph...the 3rd-5th sentences to the left. His head between the words never and ever...His body between the words them and this. And then his legs after that. May just be me seeing it as I like to see the signs but thought I would share. Always in our hearts.

    ReplyDelete
  24. Ty has a permanent place is my heart. I think of him daily and know He is free. He keeps me in check. When dishes are piling in the sink or laundry is overflowing, he reminds me to not care. That playing and laughing with my kids is far more important.

    ReplyDelete
  25. I just can't imagine your pain as it is so painful for me to read! Makes me so sad! I try to put myself in your shoes and I just can't fathom it!

    I have followed your story for years and love to read your blogs (even though they make me cry every time!!!).

    Ty was a beautiful boy and I often think of him as if I knew him. I saw a lady bug in my car this weekend and thought of him and sometimes look in to the sky at the clouds and think of him.

    Thanks for sharing!

    ReplyDelete
  26. He has touched the lives of so many. More than most who live to be 100. Rest in peace, sweet, sweet boy.

    ReplyDelete
  27. I can't believe it's been 3 years either. The pain and emotions you shared with us that day and every day since have changed me forever...and I wish I had something to say that would make you feel better but I know there is nothing -- not until the day you see your son again.

    ReplyDelete
  28. Also wanted to say that Ty forever has changed us too in that we always jump in puddles...and when other people say things that make me feel like I shouldn't let my kids do that...I just smile knowing that they don't get it...and it's my honor to clean their little clothes...that and all ladybugs. Thanks for helping me be a better mom.

    ReplyDelete
  29. Cindy, your family is always in my thoughts. Reading this last post today from Ty's anniversary few weeks ago made my chest hurt :( soo freakin terrible. I wish you, Lou and Gavin nothing but the best!!!
    Angela from Carmel

    ReplyDelete
  30. makasih yah atas informasinya, jangan lupa kunjungi blog aku juga.
    QUEENXXX92

    ReplyDelete
  31. I checked your blog every day in 2012, and the day I saw he had passed is forever burned into my mind. I was driving home from work, checking in at a red light. I read the words and ugly cried all the way home. I was inconsolable, and even rereading them here produces the same results. There are no words for what you've suffered. I think about your son all the time; especially when I hear anything about muddy puddles.

    ReplyDelete
  32. Oh Cindy, I was thinking about you in October. Please know I am following you and all the wonderful things that you do but more importantly I remember Ty. I remember him when I spend time with my kids, I remember him when I let them get muddy, I remember him whenever I see a ladybug. Love to you. xo

    ReplyDelete