Monday, March 26, 2012

Calling all angels


How did we get here?  Again!?!?!  I am frantic.  I am fragile.  I am frightened beyond words.  

The steroids aren't working to improve Ty's weakness because we aren't dealing with just swelling in the brain.  That would have been better.  More treatable.  Ty is suffering from radiation necrosis (healthy tissue in his brain is dying as a result of the radiation that he received a year ago).  It is very, very serious.  It is an unstoppable beast and we don't know when the destruction will end.  Ty is being beat up before my eyes, only the blows and the bruises are all happening on the inside and I am stuck handcuffed to the sidelines... useless.   

LEAVE MY BABY ALONE!!!  DON'T YOU KNOW WHAT I WILL DO FOR HIM?  It doesn't matter how fierce I am in this fight.  There's nothing I can do.  Can you imagine how that feels?  I always thought there's nothing more powerful than a mother's love, but Ty's chronic illness continues to remind me that I can do nothing but watch him suffer and pray with vigor. 

I am thankful for the power of prayer and how it often brings me peace, but right now I feel the complete opposite. I want to scream.  I want to RIP my hair out.  I want to fall to the floor and pound on the tiles.  Worse, I want to throw myself out the window - straight through the glass and onto the pavement - it would hurt so much less.  I would love to feel some real, physical pain.  I want it so much.  That way, I can focus on something more palpable than the emotional torture of living here in hell.

I hate this place.  This disgusting hospital where the grimy walls are closing in on me.  With the beeping and the alarms and the casual attitude of the nurses.  My disrespectful roomates and their stupid-a$$ ringtones at midnight.  I guess I shouldn't direct my anger at these people, I know he is getting excellent care, I am just mad that I am here.  That Ty is here.  Again.  I can't seem to control myself from bouncing between anger, fear and pure madness.  I am losing my mind.  I am totally deflated.  I am broken. 

Sometimes, though, when I am rolling in and out of sanity, I become overcome with serenity.  I embrace those moments and in the calm I remember that I have been here before.  Oh so many times.  That there is still a wealth of uncertainty ahead and I need to hold onto that uncertainty because it fuels my undying hope. 

And it is always better to hope than to despair. 

  

39 comments:

  1. I am praying extra hard tonight for you Ty! I hope to hear good news tomorrow. God Bless you Big Boy!

    Prayers from Texas,
    Robert

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  2. Praying for you, Ty, and also for your loving family.

    Also, saw this and thought I should pass it along:

    http://virtualtrials.com/news3.cfm?item=4643&showtext=y

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  3. I feel your family is being terrorized by this horrific demon. I wish we could destroy it once and for all. I wish there was some way I could comfort you.

    Keeping you extra, extra close in my thoughts.

    xoxoxoxox

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  4. I could probably fuck up your roommates phone for you.

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    1. Colleen's comment above must have made you chuckle. It certainly made me laugh at a time when I wanted to scream out in pain for you. Thank you Colleen for being such a good friend to Cindy and for putting a little humor into an awful situation. Cindy- We are praying hard for you and thinking about you every day.

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  5. You poor thing. Your anger at your roommates and at the fact that your baby has had to endure so much pain is all valid. Having a sick child is the cruelest act of nature. You just have to count yourself fortunate to be living in a time when mankind has discovered so many, many ways to defeat nature. I send you love and wish you peace...all of you...and strength to handle everything on those plates you're juggling.

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  6. My heart if broken for you. I cannot imagine what you are going through. I don't even have any words to type to try and make you feel better. Just know you are Ty are in my prayers

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  7. I'm so, so sorry... My heart hurts, and I am praying very hard.

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  8. Our prayers are joined with yours and those of the countless others who are praying for your strong and beautiful boy.

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  9. I wish there was something I could do to take this all away from Ty, spare his soul from the evil that haunts him. All of you are in my thoughts and prayers day and night. I pray to my angels to protect Ty and to forever watch over him. This is so unfair and cruel and I can't imagine the pain you are all enduring. Sending all our love, hugs, prayers and thoughts, always to you, Ty, Louie and Gavin xoxoxo

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  10. I wish I could do something more than pray for Ty. Just remember how much of a fighter that little man is and you'll find strength in that xoxo

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  11. Cindy, My Heart broke with that post but I couldn't help but notice the time you posted Lucky 11:11 my sons Birthday and know that wasn't a coincidence ~Prayers to the Angels today with Love~Susan

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  12. Praying for Ty to be pain free and on his way to healthy once again. My heart breaks for you as only a parent can understand. I can't even begin to imagine the pain and anxiety you must be feeling. Just breath... Focus on what is. Ty is cancer free right now. The rest of this are bumps in the road on the path to recovery. All these prayers are going to give Ty strength to overcome these battles. Hugs to you all!!
    Michelle

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  13. Cindy
    We'd all pay for the replacement phone after you throw your roommates out the window! Breath and stay focused. You are much loved and there are lots of prayers occurring around the world for you today!
    Kimberly

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  14. I am praying for Ty. I am so sorry that he is suffering and I am thinking of you and your family. Prayers don't feel like enough. I wish there was more that we could all do but please know that so many people are praying for your little boy and sending so much love his way.

    Ann from Buffalo

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  15. Cindy, I am so humbled by your strength, I would have crumbled long before this. I will do my best to never complain about the small trials in my life. You and Ty are my hero's, the kind of person I want to be. I know that Ty is going to beat this because he has the heart of a lion. I know it is so hard for you right now but I hope you feel our love coming your way to help hold you up so you can be there for that beautiful young boy. My heart and soul is with you and your family and I will pray for better days ahead for Ty and all of you. A big hug to each of you. Love, Rose

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  16. You don't know me and I don't know you, but I know a little bit of your journey because I too am a mother of a child with chronic illness. My son Malachi has a neuromuscular disorder - he is ventilator dependant FOR LIFE. He is 13 years old and the docs said he wouldn't live past age two. BUT GOD said something different. I won't make this post about me or Malachi. What we do have in common other than our respective journeys is our faith. I thank you and I thank God for your faithfulness! I know it's hard to stand and believe when we see what's happening right before us, but I thank God for what we can't see; I thank God for working behind the scenes! And I thank YOU for your authentic, raw feelings; you exposed your feelings and it gives other mothers/parents permission to be real too. I touch and agree with you for Ty's healing and happiness and peace for ALL of your family. Stay close to the cross ALWAYS!

    Peace & Blessings,
    Dena

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  17. I wish I could say all the right words to make it better and make it so Ty can finally catch a break and be pain free. God knows he deserves it. I am praying extra hard for all of you. You sent me a Ty bracelet around Christmas and I have yet to take it off. I will never take it off until Ty is cured of this awful disease. My thoughts and prayers are with you.
    Jennifer

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  18. You dont know me but i have been.following your post. I just looked up radiation necrocis and the beat treatment with most success is avastin,bevacizumab and it helps to reverse it. I pray for your family i love your little boy.

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  19. My heart aches for precious lil Ty and your family. I cant stop crying and begging God for lil Tys miracle. I want nothing more in this world than for lil Ty to be completely healed. I am praying to God. I pray he hears us.

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  20. Dear Cindy and Lou, Last weekend I went to a wonderful conference here in California, many of the speakers being cancer survivors. The main message was positive visualization. In fact, one of the speakers was Anita Moorjani, a woman who was at end stage lymphoma, in a coma with all organs shutting down...and that was 2005 and now she is cancer free. Here is a quote from Wayne Dyer: "Begin noticing and be careful about keeping your imagination free of thoughts that you do not wish to materialize. Instead, initiate a practice of filling your creative thoughts to overflow with ideas and wishes that you fully intend to manifest." This is something I have witnessed you doing with grace over the past year, Cindy. I am sending you these words as a gentle reminder that you are Ty's greatest healers. I am a grandma, mother of 5 and grandma of 4. I have been through a life crisis as a mama too. And I am praying for you and visualizing that little one grown into a strong young man, surfing right here by me in the Pacific!!! :) xoxoxo Sending so much love, Marianne

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  21. I am sure I am just one of thousands of people that read your posts daily. I actually stopped reading them after the N.E.D. post and resumed immediately when I read about Ty's setback. I pray for you and your family. I have very little experience in these situations, but I would suggest that you keep looking for "out of the box" ideas from the doctors. For example, I know that "cold" helps protect organs in drownings, but I do not know if that is pertanent to this case. All I know is that I will pray incessantly for you and your family. Please know that I would do anything at all possible to help you.

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  22. http://www.cancercompass.com/message-board/message/all,53613,0.htm

    Treating Radiation Necrosis of the Brain with Avastin, on Cancer Compass website.

    Cindy,
    Ty is so so special, as I read your update I went frantically searching for anything that could help Ty, this caught my eye, who knows any knowledge is better than none? Sending you all my strength, love and prayer for your little Warrior.
    Leslie

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  23. I think it goes without saying for anyone who knows Ty's story that we are constantly praying for him to get bedda. My heart aches thinking about the emotions you are experiencing and the feeling of helplessness. I am sure it is easier said than done but put your faith in the doctors and put the rest of your energy into snuggling with that amazing little boy of yours.

    Sending lots of prayers your way for peace and comfort for Ty.

    Bridget
    Memphis

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  24. Cindy you have every right to get angry and mad, scream at the top of your lungs or want to jump out a window.. I would feel the same way if I was fighting for the love of my life feeling defeated along the way. Something so horrific you can't control will def make you feel angry and crazed. But know that our prayers are working and your positivity, although deflated at times, will prevail. You will wake up tomorrow in a different mood and you will start the day with a positive prayer and think about how visualizing Ty walking down the aisle will be coming true. We're allowed to have days of anger, hell even weeks of it when in ur position, but like all above me have said, staying positive is KEY. Get angry, get down, stomp, scream, hit, cry.. but tomorrow or the next day get up a new woman full of love and positive energy! We're behind u 1000% :)
    Much Love,
    Allison

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  25. My heart is holding you and I am sending all the strength I can - I wont' give up on miracles. My prayers are here.

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  26. Cindy, I'm thinking of Ty and you (and Lou and Gavin)constantly. I'm praying and sending out karma and so many others are, as well. These words sound so feeble but please know that you are being held close in thought and prayer by so many.

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  27. UGH! Your poor boy is yet again in the trenches. So sorry to hear that he is having hard times. As always, keeping you all front and center in our thoughts and sending heaps of positivity and prayers.

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  28. The unfairness of it just makes me want to scream - I can't even imagine how angry you feel and you have every right to it. Be strong, know that my prayers are joining all the others begging god to give him (and you) a well deserved respite.

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  29. Your son and your family are in my prayers every day. What is your email address? I would like to write you. Thanks, Neil

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  30. Prayers for healing and rest for you and Ty and your whole family

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  31. Always praying and beleiving that Ty will beat this monster in the end. NEGU SuperTy!!! You will always be my HERO.

    All my love always,
    Elaine

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  32. I am at a loss for words - I am so sorry you all are here at this point and wish I could do something to help. I'll say a prayer and send positive thoughts your way - I wish it was enough to do the trick. I completely understand your frustration and sense of despair - I want to scream along with you at the injustice of what Ty is facing. Stay strong little man - thinking of you and praying for you. Stay strong momma - love and hugs to you all.

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  33. I hope Ty is doing better today than yesterday and that improvement comes with each passing hour. I know the angels are camping out near Ty. I am praying for God to restore health to his body because with God-ALL things are possible.

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  34. I pray that today brings more comfort, peace, and healing to sweet Ty. I can't imagine how you must be feeling but do hope that you feel some comfort in the love, prayers, hugs and positive energy coming by the many who have been so touch by Ty and your strength. I love you all and am thinking of you always. We love you Ty!!!!!

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  35. Dear Cindy, Today I drew an angel card for you and I drew "Acceptance". The prayer read: "Dear God and Archangel Raphael, please help me accept that everything is going in the right direction."

    Sending love and my prayers onto your family once more this morning. xoxo Marianne

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  36. Peanut4288@aol.comApril 4, 2012 at 12:47 PM

    I have a friend who has a hyperbaric chamber in her house BC she has a sick child. She offers it to any child who may need it. We live on long island. Please contact if this interests you.

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