Thursday, June 14, 2012

Feels like home

We arrived in Long Beach (NY) late Friday afternoon, and it has been a non-stop whirlwind ever since.  I’m so, so sorry for the delay in updates, but we had very limited internet access and every time I tried to post something, my computer would shut down.  I’m happy to finally be back online right now, but please don’t be alarmed if this happens again while we are away from home.  The connectivity is just very spotty and it’s driving me crazy. 

We’ve been having a great time in our old neighborhood – it really feels like we are back home.  We are visiting with friends and family, stopping into our favorite food spots and stores, and saying hello to all of the familiar faces that we miss so much.  Everyone has been so warm, it feels like we never even left.
All-in-all, Ty has been doing great.  He is so happy to be here and he has been willing to do a lot of things that are normally out of his element like taking long walks in the stroller and even going on the sand for a decent amount of time to “build sand castles”.  By the way, I told Ty that his hair is out of control and he said, "I gunna grow my hair wheelie long."  I guess he's going for the British rock star look for now... that or the Robin Thicke bouffant.  Either way, he's stylin'. 

On Thursday of last week, Ty went to therapy at Blythedale and we said “goodbye” to all of his amazing therapists for this mini-hiatus that we have embarked on.  It is a little scary knowing that we will be missing several days of therapy (both in the oxygen chamber and at Blythedale), but Lou and I are committed to keeping him active, stretching him out and doing everything we can to try and maintain some of the headway he has made in therapy so far.  Lou is especially dedicated and knowledgeable on that front, so I know Ty won’t fall behind during the break.  If anything, I hope his therapists see improvement upon our return.  Lately I am seeing the most change is in Ty’s overall head control (he can’t hold his head up, but he can move much better from side to side and he isn’t having as much stiffness/spasms in his neck).  Also in his speech.  Ty is getting louder and louder and I am so grateful for this because there is nothing more frustrating for us both when we can’t communicate well.  Finally, his lower arms, his hands and his wrists are getting a little stronger.  I am seeing some slight lifting of the wrist (only when he is not working against gravity), his grip is a bit more controlled (he can hold onto simple objects without his hands going into spasm) and his lifting at the elbow is getting higher (he can almost lift his hands up to his face when he is sitting upright).   All of this tells me that the signal from his brain is there, that it is getting stronger and that it will continue to do so.  I just wish it could happen faster for him.  He is working so hard, he wants so badly to get better.

I can’t tell you how many people have told Lou and I that they feel nothing but confidence in Ty’s full physical recovery.  I have been told that magical things are going to happen for him, that he will turn a corner soon, that he will do amazing things and that he will continue to beat the odds by a number of people who have dreamt it, or who just feel it in their bones.  That means so much to me.  It is empowering to hear some validation from someone else.  We are not the only ones who believe in Ty – there is a whole wonderful community of people who love him and believe in him and knowing that brings tears to my eyes every day.  Happy tears, of course.
It’s very hard to put into words what it feels like to spend time back in Long Beach.  I am so excited to see everyone and to spend time at the beach – my ultimate zen – but at the same time I am haunted by memories of what used to be.  Watching Gavin play at Magnolia Park, the playground where Ty spent most of his time, makes me want to burst out in tears.  Walking past our old house and imagining Ty running in the lawn makes me want to bust open the doors and reclaim it.  Sunday I took Gavin down to the ocean and watched him as he grabbed fistfuls of sand and threw them in the waves over and over and over again.  When he was a baby I used to pick them both up after work and take them to sit at the ocean for an hour before our dinner/bath/bed routine.  Ty would do the exact same thing, throw sand in the waves, while Gavin crawled on the blanket.  Again, seeing Gavin enjoying all of the things that Ty can’t is heartbreaking.  I am sure that a lot of what I long for isn’t necessarily Long Beach, but the life we had here before cancer invaded our happy home.  I want my life back.  I am a better person and mom for having been through all of this, but I would rather be the person I was before because my Ty doesn’t deserve this.  It’s so unfair to him. 

This morning I took Ty and Gavin to the local candy store for some delicious chocolates.  The woman working behind the counter wasn’t familiar to me.  She didn’t realize there was something wrong with Ty, at first.  She just thought he was sleepy (like everyone does).  Even after she saw the neckbrace and the way I propped him on my knee to see the chocolates, she didn’t shy away from interacting with him and I loved the way she talked to him.  She was so soft, so warm and so kind.  I instantly knew she was a loving person.  “He’s just so tender” she told me, and I couldn’t agree with her more.  What a perfect insight coming from a complete stranger.  Ty is tender and pure. 

It’s been so long since I’ve been able to write, it’s impossible to recall all of the details from the past week.  As I mentioned, we were at Blythedale last Thursday.  Friday morning was our big meeting at the Pawling  Elementary school to discuss Ty’s future in the education system and what kind of services he will be awarded.  I am pleased with how that went.  The special education department clearly cares and they want to give him everything he needs to succeed.  It’s just hard for me to sit in that conference room and talk about a school environment for my son that is so very different than what I imagined for him just three months ago.  He will be getting a lot of PT/OT and speech and a special education specialist to conduct at-home tutoring every day until Ty is physically able to attend school. 

After the meeting we left for Long Beach to kick off the weekend.  As I mentioned, we had a wedding on Saturday so Friday night was a wonderful rehearsal dinner.  My mom and dad graciously watched the boys so Lou and I could enjoy ourselves.  The we had the best time at the wedding.  Really.  It was a perfect day.  The wedding took place in the afternoon, the weather was perfect, and we got home in time to put the boys to bed so there wasn’t much stress over Ty’s medication and such.  The only hiccup in the evening was when my mom called to tell me that Ty threw up, but it was an isolated incident and that happens.  As long as it doesn’t happen more than once, I try not to panic.  Sunday was a big post-wedding brunch at the hotel and I took Gavin for a long walk on the boardwalk.  Later that day my cousin and some of my best friends since elementary school came out to spend the day with us and we had a great time at the beach with all of the kids.  That was the one and only time I got Ty out there on the sand, but he really enjoyed it.  I had him sitting in my lap as I built a sand castle and made sand cupcakes.  The other kids showed Ty the sand crabs they were catching and Gavin was bringing him buckets of water.  All things considered, it was actually pretty normal.  He didn’t last long, but Lou was there to take Ty back to the house so I could spend more time in the water with Gavin.  It was a great day.  We spent Monday recuperating and walking all over town with Ty and Gavin.  And eating!  We’ve been doing a lot of that.  Yesterday was wet and rainy so we all snuggled indoors for the most part and today I took the boys to the mall and to visit with Grandma and Pop-pop.  We are having such a great time. 

One last update before I sign off.  Ty started a new cycle of oral chemo (etoposide again) and his eating habits have completely changed yet again.  This always seems to happen when he changes medication.  He hasn’t been eating much of anything at all (and he had been doing so well with that just last week!) but I am happy to report that he is drinking milk again for the first time in probably eight months.  Out of the blue, he decided he wanted to try it again.  In fact, I returned to the living room after doing dishes to hear Ty and Gavin laughing this morning.  “Look” Ty said, and he took a sip from the straw.  I was so confused until I realized that Gavin had helped Ty by propping up his cup, and Ty was able to reach the straw on his own.  It was so cute!  You can see from the picture that he is really balancing the cup rather than holding it up, but regardless, it made him feel proud and independent.  :)


  1. So glad you had a great time. I never realized how attached I was to Ty and your story until you didn't post. In some odd way he feels like a little extension to our family. I'm actually sitting here with tears because I am so relieved you were on vacation and he is okay. It is so nice to hear that you were all away enjoying time together and everything seems to be taking a positive turn.
    Glad you he is doing better and hope you were able to get a little rest.
    As always prayers coming your way

  2. Just an FYI, there was a great Peds gym in LB called Paws for Peds. If they are still there, they could be a good resource if you wanted to do some private visits when you are in LB for an extended period. Hope you continue to enjoy your beach time!

  3. Cindy & Lou,

    :) smiling from ear to ear! I just love posts like this one! I am far from a doctor, but I believe that this mini-vaca will work wonders for Ty! He gets a break and gets to spend time with his family and play with kids without all the hospital visits!

    I will say that I am VERY jealous! The beach??? I love this beach, wish I was at Robert Moses field 5 right now! LOL!

    So happy to see him drinking milk again, and am happy to hear that you and Lou enjoyed some "adult time" this week too!

    Love the pictures, keep them coming!

    Joy Marielle
    Baltimore, MD

  4. It's so sweet to hear there is improvement in Ty's movement. Do you realize what this means? It's huge. Reversal has ALREADY been acheived!

    I accept nothing but complete and total rehabilitation for Ty. I can SEE IT. Can't you SEE IT?? Do you know there are more than 100,000,000,000 ways to that end, and that's an absolute fact? The solutions are practically limitless. We only need one. Those are good statistics :)

    And no matter how slowly things change today, leaps and bounds are just as possible for tomorrow.

    Love you Ty, Gavin, Cindy, Lou, and Mely!