Thursday, June 2, 2011

I hate "what if"

Tomorrow my cousin will put his three-month old baby girl to rest.  I wish I could say that I can't imagine what he and his wife must be feeling, but unfortunately I can imagine it.  I think about it all the time. 

Remy Elena was born premature at 28 weeks.  She faced multiple complications… setbacks after setbacks…  but I was so 100% sure that she would pull through.  I swear I had clear visions of her at grade-school age playing on a playground. I had nothing but positive thoughts when it came to Remy, even when I heard about each new problem she faced.  Maybe because I have seen how Ty beat the odds time and time again.  I know how everyone says it is important to remain positive, and how powerful that kind of positive energy is supposed to be, but this week I have my doubts.  I feel so blindsided. 

I have read that the survival rate for babies born at 28 weeks can be 80 - 90%.  The statistics for Ty's type of cancer… let's just say the survival rate is significantly less.  Very much so.  Tomorrow is going to be such an emotional day for us.  First and foremost, because I can't believe this happened to my cousins who I love so much.  I never want to see them hurt like this.  My heart is broken open.  Also, because I feel so close to their pain it is terrifying.  We are supposed to be them and they are supposed to be taking their baby home, but for some reason it didn't happen that way. 

There are a lot of thoughts that I keep hidden from my everyday life.  Tucked away in the back of my mind.  And, as they work their way in and out of my thoughts throughout the day I do my best to simply ignore them and go about smiling.  Of course, Lou and I have talked about the "what-if?"  We shared our thoughts around what we would do to honor Ty if that day were to come.  We share our greatest fears and we tell each other how hard the lingering "what if" makes it for us to fully enjoy Ty's daily accomplishments.  But there is no sense in allowing that to surface often.  It's not like there is any way to prepare for the worst, so instead we remain positive as much as humanly possible.  For Ty, I know that our positive energy and the amazing support he gets from so many people like you is the reason why he has come this far.  Why didn't it work for Remy?  How long will it work for Ty?  I am totally and completely crushed.

Update on Ty
Today I brought Ty into the hospital for his clinical visit.  He had a hearing test, and all is well (a very common side effect from the chemo he is taking now is hearing loss).  We also spent some time with the nutrition team because Ty has lost all interest in eating by mouth.  Another awful side effect from the chemo because his taste has been drastically affected.  They had a lot of ideas like making frozen yogurt pops or trying applesauce, but I'm his mom and I know 100% that none of their suggestions will fly with my little Ty-rant.  This is a kid who won't eat a french fry if there is a speck of pepper, and he calls his noodles "dirty" if someone sprinkled parsley flakes on them.  He gets completely grossed out by everything and he will throw up at the drop of a hat.  For now, we are sticking with strawberry dum-dum pops and the pink Mighty Mini ice pops. 

Ty is getting SO STRONG in his arms and legs.  He can sit up for almost 1/2 hour at a time, he can thumb through books on his own, he is doing great with his puzzles and he can engage with so many more of his toys than even just last week.  Lou and I actually caught him sitting quietly and playing with his puzzles all by himself today.  I can't tell you how it feels to see him acting like a kid again.  The only shocking part of all of this is that he was a chubby little toddler wearing size 2T when this all began, and now he is a big boy (4T) who is interested in big boy things and says all of these big boy phrases… he is growing up so fast and we couldn't be happier about it.  He may have a lot of catching up to do with kids his age, but God willing he will have his entire life ahead of him to do so. 

I have a new video to upload over the next few days, but I don't really have any new photos to share.  Here is one on the way to the hospital, but he's asleep so it's nothing special.  I just want you all to see his beautiful face because it's been so long since I've been able to post.  Ty starts his next round of chemo next week.  Most likely Tuesday or Wednesday so stay tuned.


Thank you for your patience and understanding while we are going through these emotionally draining times.  I know you are eager to hear about how Ty is doing and I am grateful beyond words for that.  Thank you for all of your kind thoughts, prayers and energy toward my family, as well.  I will have a slew of pictures, videos and news on next steps ASAP.  Love to you all. 

7 comments:

  1. I hope Super Ty continues to strive each and every day from now on! He's always in my prayers, i wonder how he is doing everyday and love reading positive posts about how he is staying so strong! Even though he is so young i look at him as an inspiration. He is a beautiful creation of god who i know can concur this and anything he can imagine! I really would like to know is there anywhere i can send a care package to for ty like a p.o box or an address? please let me know! you can email me at brittany7671@gmail.com

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  2. Hi Cindy- I will see you in a few hours at the funeral, and I am sick to my stomach about Remy. We saw Pete and Mary on Sunday night and my heart is breaking for them and all of you. I know today will be particularly hard for you. On the other hand, I am so thrilled to hear that Ty is doing well. We are pulling so hard for him.

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  3. I am keeping your family in my thoughts and prayers. I went thru a very similiar situation with my cousins almost 2 years ago and it was one of the saddest days of my life.

    So glad to hear that Ty is getting stronger every day!!

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  4. I read your post everyday about your little man. It breaks my heart to think of little ones suffering like this. I myself have a 15 month old boy and CAN NOT even begin to image what you must be going through. You are a VERY STRONG woman and mother and I truly admire you. I pray every night for God to give Ty a miracle. Keep strong as there are so many people you don't even know praying for you all. God bless.

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  5. Nobody will ever be able to answer the question "why" but know that Ty has another angel in his corner. I am sure Remy is up there fighting for Ty.

    God Bless you Cindy and Lou. You are in my thoughts and prayers daily.

    I am thrilled beyond words at how well Ty is doing. Asleep nor not, that is one beautiful little fighter you have. You Go SuperTy!!

    All my love,

    Elaine

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  6. I'm so sorry about your cousin and the painful emotions that it is stirring up for you regarding Ty. I want you to know that even though I have not met you or Ty I think about him every day and pray for him. I look at my 18 year old boy and feel so fortunate that he is in good health. I try not to take it for granted. Ty deserves the same good health and I believe that he will get there. You and your family have really touched so many of us out here. I've never written to a stranger like this before but I want you to know that i have shared your blog with family and friends and we are all pulling and praying for ty. Stay strong. You are doing an amazing job. Noone should have to go through what Ty is going through and it's impossible to make sense out of it but I believe in the power of prayer and positive thinking. I'm so happy ty is feeling stronger. He is such an angel. Take Care.

    Ann from Buffalo

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  7. Cindy & Lou,

    I am so sorry for your family's loss. My heart is breaking for you guys and I am praying for you.

    I am so happy to hear that Ty is feeling well and is progressing. That is the best news ever! He is such a wonderful little boy! I know he is going to pull through this. Thinking and praying about you guys always!!


    Joy Marielle
    Baltimore, MD

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