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Showing posts from September, 2012

Boobies

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Today is the last day of September, marking the close to Childhood Cancer Awareness month.  I think it's great that there is more attention for the kids during September, but it's also disheartening that we haven't made more of an impact so that people are aware every day of the year. Since Ty was diagnosed in 2010, however, I have seen improvements.  I have seen social media leveraged to a much higher degree, and I have seen more and more attention in mainstream media. I feel like we are on the verge of making a difference, and I am excited about that.  Then my excitement turns to pure disgust when I can't escape the fact that my almost five-year old boy is lying on the couch dying a little bit more with each passing day.  I'm kicked in the stomach by a steel tipped boot with the horrifying thought of "too little, too late."  It may be too late to save Ty, but I will never stop trying to spread awareness by sharing his story. His long, painful story whe

The girl with the broken smile

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I used to be the girl with the big, ever-present smile. All my life, I have been complimented for that.   Whenever I meet new friends, business colleagues, teachers or sales associates, they would often tell me that I have a great smile.    I believe that's because I was always so easily humored in every day things, and I lived a genuinely happy life.   I love to laugh.   I think I used to smile so much because it is contagious and it feels good when people smile back. Ty gets his smile from me.   He is exactly the same.   He laughs so easily and I have no doubt that he would live his life with a huge, sh*t-eating grin on his face all the time.  He always has.  Goofballs. A few people have asked.  Ty's eyes are green (it's always hard to tell in pictures)   I don't think I'll be that person again because I'm so broken now. I'm a better person because of Ty, but if he leaves me behind he will be taking my smile with him.  I know I will find so mu

Sweet dreams for the best good boy in the whole wide world

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"The best good boy in the whole wide world" is a silly nickname that Lou and I have been calling Ty forever.  We actually have a totally goofball song that we sing where we ask Ty "who's the best good boy in the whole wide world?" and he answers "me!"  We get louder and louder and it can always make him smile when he ends it with a scream... "MEEE!"  He has been sleeping most of today, and I like to imagine he is having sweet dreams, literally, since we all know how excited he gets over candy.  Waiting and watching our beautiful boy sleep is so painfully beautiful.  While he sleeps we sit and run our hands over his soft, delicious hair, our finger slides down his warm, pink cheek, and we kiss him on those billowy, heart-shaped lips of his over and over like we've been doing since the day he born.  I am constantly checking the temperature of his hands and feet to make sure they aren't getting cold.  Several people have told me that i

All little boys go to heaven

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Ty has been sleeping so much over the past two days.  I was starting to get very worried until he snapped out of it around 2PM and we ended up having a wonderful afternoon/evening together.  I was so relieved because I am not prepared for him to withdraw from us like that.  I need to interact with him.  To see his smile!  I don't know if I'll ever hear his laugh again (other than the fact that I carry that most beautiful sound in my heart everywhere I go), but if I can still make him smile then I can get through the day and cherish the memories made.    Today's smile of the day is brought to you by our friends Stan and Beth.  I have mentioned them before because they always seem to be with us during some of Ty's greatest moments (i.e. when he first stood on his feet again after a month long bout with meningitis, or when he started eating by mouth after his second craniotomy).  Even on their most holy day of the year, they took time out of their holiday to driv

Can I keep him? Please?

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I recently began spending my sleepless nights in Ty's room, which is where I am right now.  The totally cute room that he never used.  It has a Captain America theme with an adjustable bed (a hospital bed, but you would never know) and an adorable piece of red furniture that is basically a set of shelves to display all of his cool stuff.  The walls, of course, are blue.  So is his comforter.  When we moved his room back upstairs a few months ago, Lou and I truly believed he would soon be strong enough to turn over in bed and we planned to begin making his transition from our bed into his own room after two long years.  There are a number of Captain America posters sitting on top of his shelves.  We never did get them framed since we bought them on Ebay.  I am so torn over what we should do because Ty's room is incomplete without framing and hanging the posters.  Should we finish it up the way we planned?  It's all so surreal just thinking about it.  I swear, sometimes I d

Please don't die

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Tonight I did something I've been trying so hard not to do.  Ty had fallen asleep for the night and I noticed that his eyes were still partially open.  My heart sank.  I immediately recalled some of the information I read in the hospice handbook under the category "weeks to days" (signs when an individual has weeks to days left on this earth).  During my morning coffee I read the following and thought about how Ty looks when he is under deep anesthesia: the individual may lose the ability to shut his or her eyes completely.  In a panic of emotion I leaned in and whispered to Ty, "Don't die. Please."  I know he isn't going to die tonight, we will have tomorrow, but I feel weak for doing that.  Like I was trying to take back all of this tough talk about letting go.  Like a little kid crying, "I changed my mind!"  I didn't want to do that.  I wanted to be strong and to tell Ty how it's okay.  But you all know that the truth is it's

A breath of fresh air for Ty

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Today was a rough day for Lou and I.  Ty is having more and more trouble getting his words out, and we are having more and more trouble understanding him.  We weren't able to capture any big, genuine smiles today - probably because they were few and far between - but we still made sure to take some pictures of our most beautiful boy.  At one point, Lou was just staring at Ty and started to talking to me about just how perfect he is.  Everything about him.  His lips, his smile, his eyes, his totally awesome hair.  Thank you for all of your reassuring notes and comments.  You're right, we will never forget the perfect curve of his shoulders, the cute little chip in his tooth or the freckle on his foot.  We will remember the sound of his laugh and the feeling of his arms wrapped around our necks at night. But, my God, how we are going to miss all of those things.  I will never in my life stop longing for his physical presence.  Not for a single minute and this I know for cert
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I was happily living life with blinders on for so long.  I didn't know how great everything was until I look back and yearn for my stressful, overworked with two small babies life.  If I knew then, I wouldn't have been stressed.  Or overworked.  I would have known how important it is to have balance.  I also would have been aware of how many things around me are happening on purpose.  My eyes would have been open to the everyday signs that are more obvious to me now.  In the weather, in the things I read at random, in the things I spot in nature and in the spontaneous actions of the day.  There are people who are more aware of the world, in it's entirety, than others.  During our last hospital stay, soon after we received news about Ty's progressive disease, I stepped out to use the bathroom and spotted Lou talking with a stranger down the hall.  He was gone for a while, and I thought "oh boy, I wonder what that's all about."  Later, I was walking down t

All fresh and clean

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I wish I saw this coming sooner.  Maybe I did.   For the past three weeks I had been feeling so incredibly heavy. I can't explain it, I was just sad, sad, sad... before anything really changed in Ty's clinical condition (and that is out of character for me, to get so down in the dumps).  I wonder if it was my instinct knowing that the other shoe was about to drop. I debated whether or not we were doing right by Ty with every dose of chemo I administered. I watched him on the couch, unable to feed himself or hold his head up and I thought, "if this doesn't get better for him, what are we fighting for?" The next thing I know we are rushing back to the hospital on Saturday worried about intercranial pressure and another possible shunt failure. It all happened so fast.  When I think about all of the things I want to still do with him I get lost in a fog of regret.  Why didn't we just take him to the Bronx Zoo instead of talking about it all the time?  And it

Ty Loves Life

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Yesterday was pouring rain for the entire day.  It was so fitting, I loved it.  After I picked up Gavin from pre-school it had eased up into a slight drizzle and Gavin ran off into our backyard instead of into the house like he was supposed to.  He found a big 'ole puddle in the walkway and started jumping like crazy.  As you know well, jumping in muddy puddles is something that Ty has been talking about doing for over a year now.  Lou and I told Ty that he will finally be able to do that soon. My only regret is that I had to drag Gavin inside before he was ready to stop playing because I was so eager to get back to Ty's side.  Let your kids jump in muddy puddles whenever they want.  Soon they'll be all grown up and see the wet pants and wet shoes as nothing but a nuisance.  It's beautiful that children can find such joy in the simple things that we no longer appreciate as adults.  I hope I never forget that.  I couldn't truly enjoy watching Gavin have fun in the

Our aching hearts

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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.  Ty's doctors and nurses, they are so special.  They have given us beautiful. prec

Waiting for more answers tomorrow. Maybe.

I am so tired from crying.  I am physically and emotionally drained.  Today I sat at Ty's bedside in the PICU begging God to stop your suffering, even if that means we have to let you go.  I have done this several times before.  After watching Ty get beat up and knocked out time and time again over two years, I can't even count how many times I have had this conversation with God.  Both Lou and I talk about this all the time.  Of course, we will never stop fighting for you.  Of course we want you to live, to be with us.  Of course.  But, if it means you are hurting all the time.  If it means you won't live a happy life, then what are we fighting for? We had another very difficult conversation with Ty's neurosurgeon today.  Let me back up to yesterday. Last I posted, we were in urgent care.  Ty's breathing and congestion wasn't improving and he tested negative for any common viruses or bacterias like the flu or the common cold.  His eyes were crossed.  That a