Tuesday, April 10, 2012

Fighting Spirit

Ty's fighting spirit, while it can be awe inspiring, also poses a lot of challenges for Lou and I.  Boy was he fighting hard today.  He was SO reluctant about going to the hospital.  He kept saying how happy he was to be home.  Broke my heart.  It started a couple of days ago, actually, when he called for me from across the room.  "Mama?"  "Yes, Baby?"  "I happy to be home."  I winced every time he said it because he wasn't aware of how short lived it would be. 

Ty yelled and asked us to turn the car around for the entire 45-minute drive down.  He cried and carried on something awful that we almost doubted whether or not we were doing the right thing. On the plus side, clearly his voice is getting stronger.  Just two weeks ago he couldn't speak more than a whisper.

Today was a crazy, stressful, hectic day consumed with paperwork, introductions, reviewing Ty's medical history and settling into our new home away from home.  I left Lou to sleep with Ty tonight so I can be with Gavin, and we will trade places later tomorrow.  His physical therapy is scheduled to begin at 9AM.  Oh boy, I imagine there will be another big fight at that time.  But I'm sure the professionals at Blythedale are used to that.  Comes with the territory and they know how to coerce kids into getting PT whether they like it or not.  Fingers crossed!

I have a really good feeling tonight.  I think Ty is going to make a lot of progress - leaps and bounds - I really do.  The facility is amazing.  The staff is wonderful.  Ty is defiant and we are determined.  I am happy we listened to his at-home physical therapist (thank you, Stephanie) and pursued this option.  I feel like we already lost so much critical time for rehab and am relieved that he is finally there.  As much as I enjoyed being home, I was also riddled with anxiety over getting started on next steps.  I couldn't sleep at all, except for Sunday night after all that indulgence.  I received a card recently that had a picture of wine and cheese on the cover.... My friend in Texas wrote, "Hurry up Lent!" on the cover and I laughed out loud.  Couldn't have been more appropriate :) 

Tonight I downloaded 100 photos from my camera that were taken over the past four weeks.  It shows how much has changed and how much remains the same among my beautiful boys. 


Ty sitting up in his "spot" eating candy

Just getting home from our first hospital stretch in March, Ty is still sitting up fine, playing with Gavin
 
Poor Gavin is lonely without his Ty after we return to the hospital soon after


My BIG BOY!  So sad I missed this.
In the hospital, poor Ty doesn't understand what's happening to him.  He insists that he can still play on the floor.  Not wanting to discourage him, Lou carefully arranges this whole set-up for the Tyrant

After returning home just Friday.  Ty can't sit up and has trouble moving/holding up his head.

But that can't stop him from looking super handsome on Easter Sunday

Handsome boy #2


Best Friends Forever

That's all for now.  I feel like we are living in a tornado and I need to try to get some sleep before it swoops me up again and the next day begins.  Actually, I need to fold laundry, then rush off to lay in my bed and not sleep all night.  That's the reality.  But I'm going to give it my best because my whole entire body aches all the time - even my teeth, I swear! Well, maybe not my toes, they don't seem to be hurting me right now.  I think it's a combination of fatigue, anxiety, emotional stress and the physical stress of carrying around Ty all day every day.  Let's see if I can fix myself for tomorrow by getting at least a little bit of rest tonight.  Goodnight everyone, and thank you for all of your love and support.

Before I go, just a quick special thanks to Kathleen for the tremendous surprise.  I am so overwhelmed by how thoughtful it was - and for me!!  Your letter couldn't have been more accurate and more insightful - you really do know me :).  Thank you so much.  All of my love to you and your beautiful boys.  :)

5 comments:

  1. Those boys looked so sharp! Praying for healing.

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  2. Truely amazing! your boys are absolutely gorgeous! i never knew i could fall in love with a family that i never met before! i never knew i could hurt and cry for someone's child other than my own with the same intensity. You will forever be in my thoughts and prayers! xo Bridget from Baltimore Md

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  3. He is just delicious that little boy! I live on Long Island...gre up 10 mis from long beach and I have family in Mahopac...small world! My 5 year old boy asked today out of the blue...Ma, did Ty come home from the hospital??...I couldn't believe his face stuck with him!! All the best to you and your family always!!

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  4. Hola!
    WOW, the roller coaster continues, but now, for better reasons. We hope the PT works for Ty and for all of you. Toning can't hurt :)

    Tomorrow, my nephew Quique, will undergo a colostomy (partial removal of his intestines). He is @ Cincinnati Children's Hospital. So include him in your prayers.

    We are also thinking about Grandma and how tough everything is.

    We are keeping all of you in our thoughts and prayers day and night.

    "Don't be afraid of tomorrow, for hope is already there."

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