Monday, July 9, 2012

I'll settle for the firefly

This sums up Ty lately.  He just hasn't been very happy and it's tearing Lou and I to pieces.  He is having head pain again, but Lou and I wonder if sometimes his crying is driven more by his overall sadness and less from actual pain.  It can be hard to differentiate his feelings because he's so young.  Then there are times where he cries and clearly says "I just sad!  I just sad!"  So young, yet sometimes so much older than a four year old should ever have to feel. 

We had a tough weekend because we were all so depressed.  Thank God for Saturday night.  Our wonderful neighbors had a huge party all day and into the night.  We tried to get Ty out of the house all afternoon to stop by the party, but he just refused.  He was sad and whiny leaving Lou and I on edge all day.  It's such a horrible feeling, to carry around that weight all day - dragging our feet, snapping easily, every whine from across the room sounds like nails on a chalkboard.  Then my in-laws came over, we put the boys to sleep, and we decided to go to the party just me and Lou.  Whew!  A night out, alone, surrounded by grown-ups, great food, drinks and poolside jell-o shots :)  It was fun.  We were able to relax for a couple of hours.  We smiled, laughed, we had a great time.  That night out will keep us going for a while now.  It gave us some much needed respite that we can hold onto for days. 

Yesterday our friends came over with their three girls.  Gavin was so excited to have friends over, he was really adorable.  They had a great time playing together.  Ty, on the other hand, wasn't as excited about sharing my time with them.  Especially not sharing me with the baby.  Their littlest girl is only four months old and holding her was like holding a little piece of heaven.  She was 100% edible.  I want more babies of my own so badly, but yesterday just reinforced why that isn't in the cards for us.  Ty needs more attention than an infant.  He can't feed himself, he can't go to the bathroom, he can't roll over in bed or hold his head/body up to sit.  We're tending to him constantly and it wouldn't be fair to introduce more "need" right  now. 

Maybe you will relate to this, maybe you won't; but when Ty was born I used to have terrible thoughts about something bad happening to him.  If I was holding him near our glass coffee table, I imagined dropping him into the glass (we replaced the table with an ottoman).  If he was sleeping, I imagined he wasn't breathing.  If I was taking him for a walk, I would play out the scene of what I would do if a rabid dog ran up to the stroller out of the bushes.  Is that crazy?  I grew out of it over time.  I finally learned to let go of his hand and he climbed up the slide.  I let him run <eek!> on the boardwalk, even though I was wincing internally at the thought of him tripping.  Today, I live with even greater worries.  Today, I worry every single time I approach his sleeping body that maybe he is dead.  Lou and I talked about this, and he has the same sick thoughts all the time.  This morning we talked about how defeated we feel lately.  We can't bear to see Ty so sad and so disabled.  We feel like we are giving up, and we don't want to!  Ever!  After a few difficult days we both just want to sit back and scream at the sky, "bring it on... however this story is going to end... happy or sad... please just bring it... because we can't stand living in limbo anymore."

Which brings me to the firefly.  Last night, while Lou was in bed with Ty, I heard Ty scream out three of four times while I was cleaning up and doing the dishes downstairs.  I dropped a glass, abandoned the rest of the dishes, stepped outside into my backyard and broke down.  I cried to the sky.  I searched the stars hoping to see one streak across the sky - something to reinvigorate my hope.  I was praying for Ty's healing... begging... like always.  I calmed down after a few minutes because I eventually become content knowing this is out of my hands, but I lingered on the patio for a while before going in to bed.  Instead of a shooting star, a firefly soared across, way up high in the sky.  It was pretty.  I felt better.  I'll settle for the firefly for now.  One foot in front of the other. Tomorrow is a new day.

MRI Wednesday.  The next few days will be riddled with anxiety.  As you can already tell.  Thank you for your love and support. 


  1. I have been following Ty's story and wanted to send Ty, you and your whole family strength during this low time for you. Your words reach far beyond your computer screen and touch all of us who have come along on your journey. I was catching firefly's with my three year old this past weekend, and we'll catch some for Ty next time too!

  2. I read your story daily, and think of Ty more than that. You really do a wonderful job expressing yourself. I feel like you are an everywoman. You are living the nightmare that all parents have conjured up... our "what ifs" are your reality. I have two children and I also have imagined many a crazy scenario involving my perceived dangers and how I would protect them if the impossible were to happen. You have come across something that was beyond your control... it's worse than a glass coffee table and even though your story makes me cry, and the thought of Ty suffering is almost too much to bear, I will continue to read and send positive thoughts Ty's way. I don't know how you manage to get through each day, hoping for a good day, hoping that Ty will be in a happy mood, looking forward to a day when he is well, but you do it with grace. And you have so many people behind you every step of the way. Thank you for sharing your journey with all of us out here. We're all pulling for Ty.

  3. I'm always thinking about you all and praying for healing for Super Ty. I can relate to the awful thoughts and fears you have, I do the same thing with my 2 boys.

    When I see fireflies I will think of you.

    You are a wonderful mom and wife. Stay strong, I know it's hard.


  4. I prayed that God would confirm to you some suspicions that I have been having with every new post I receive in my inbox. I haven't heard an answer yet, but I prayed that He would tell you moreso than me. My suspicion is that Ty is cancer free, for good, and that no more need be done. I hope it is true. (But don't take my word on it. Listen for God.)

    Because if there doesn't come a day when God tells you, "It's over. Ty has no more to worry about. YOU have no more to worry about, because Ty is cured forever," and you listen, then I think you will never have the end of your story, happy or sad. As I read that portion of today's post, I felt sad for you, because the only ending can be a sad ending. There is no happy ending if you don't allow the ending to be an ending. There is only more waiting for a sad ending.

    So I pray that the ending, the happy one, comes soon.

  5. I am sorry you are feeling so "blue" the last few days. I hate being in limbo and your family has been living like this for so long. The frustration you must feel for not being able to help ease Ty's pain must be almost unbearable. I am so glad you were able to get out for a bit on Saturday night. You definitely need that once in a while. Do you not qualify for any nursing help? You need to take care of yourself so you don't get sick and not be able to take care of him.
    I pray the scans come back looking clean and you feel re-energized by that. I pray for your family each and every day and will continue to do so asking Him to bless you with His presence of strength, grace, patience, peace, and healing.

    God Bless,

    COLE's Prayer Team

  6. I have a list of questions for God someday. Why children suffer is always the first one. God has blessed you with Ty because you are a strong and brave woman. You are facing all of our worst fears as mother's. Thank god for you. I check on Ty's progress everyday. Keep in mind, healthy or ill, we all have good and bad days. Children are whiny and crabby and depressed one day, then happy and playful and corny the next day. As mothers, we all feel that we must make it all better all the time. Somedays it is better to just let God take the blame and relax. I rarely do this....but I try. I will pray for your peace and happiness and Ty's.

  7. I pray more fireflies light your way and provide the hope you guys so desperately need - Ty is such a brave fighter and you all are such a strong family. I absolutely hate what you guys are going through and don't understand a world where so many children are suffering while so many other bad people live life without a care in the world. I feel so helpless that I can't do more for you guys - but I can offer my prayers and send as much virtual hope as possible so that you know there are people out here keeping an eye on you all and wishing so hard for Ty to get better. Stay strong and try not to let the feelings of doubt and insecurity get to you - you guys are doing the best you can .