Monday, March 17, 2008

Strangely enough, I don't feel funny.

It was easy to forget, for a while, that Thomas’s “up” periods were largely fueled by morphine.

Every couple of weeks, though, we’d fall behind in the race against pain. Thomas would get grumpy and miserable and couldn’t be comforted or entertained. We’d readjust the timing and dosage and combination of meds, and everything would feel normal again for a while.

This past week, though, Thomas has still been doing the fun kid stuff – playing basketball, chasing grandparents, hitting the neighbors up for bacon - but his truly “up” times are getting shorter. The amount of morphine it takes to create those moments has spiked in the last week, and we can't always keep up with his increased needs. And he seems to hurt more when he hurts; we don’t have to guess any more if it’s a “two year old thing or a cancer thing.”

On the other end of the spectrum, Thomas is learning a dozen new words a week these days. He can tell us what he thinks is cool (airplanes, my earrings, the basketball net from Meemaw, people playing stringed instruments on TV), what’s yucky (the trash bin out back, wet stuff on his hands), and he has finally started calling Scott “Daddy” instead of “’Cott!”.

Scott’s and my neediness has spiked, too. It takes a much more concerted effort to enjoy his accomplishments and not end every present moment with the thought that this, too, is something cancer will take away. We tried half-heartedly to make some jokes about him jonesing for morphine, but it just ... isn't funny.

Some days we can do it, and some days …are hard.


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9 Comments:

At 5:26 PM, Blogger About Me said...

I had been reading your blog since Thomas' diagnosis. I have 2 sons (and a daughter since I started reading) - and we pray often for baby Thomas. They are 7 and 5. It's hard to hear them praying for the life of a child they do not know - but a million times LESS hard than it is for you to be facing all that you're facing. Thank you from the bottom of my heart for updating your blog, for introducing us to Thomas, for reminding me to kiss my kids every stinking chance I get - because, you just never know. Thanks for reminding me that as a mother, it is my job to think both realistically and with emotion at the same time. It's hard to do, but you make it look flawless. I know, I know, it doesn't feel flawless... but take my word for it, lol! You are a GREAT MOTHER and Scott is a GREAT DADDY.

We will continue to pray for Thomas. Lots and lots. We will pray that God delivers Thomas through this, and not to Him by way of it. We will pray for peace and comfort and laughter for your family, time to cherish every. single. second. Time to videorecord, record his voice, and burn all of these memories into your soul just in case.

I am deeply moved by your story, and even more moved (and honored) at how willingly you share it with us. Thank you again.

Sorry to be so chatty - but this post delurked me. :)

God bless you, Thomas, Scott and your entire family. That little boy is amazing and special and unique. He is growing and learning and smiling because you're such great parents. And he'll always know that.

Rachel (and family) in Toledo, Ohio
http://rachelcox.blogspot.com/

 
At 5:57 PM, Blogger Thomas, as told to Sarah said...

thank you for sharing your family's concern with us.

also, I will probably use the word "delurk" in the future without attribution. I'm admitting it.

 
At 8:51 AM, Anonymous Anonymous said...

Hey cousin Sarah, it's Amy. I've been reading a long time, too. I've not said anything because I just have't known what to say. I share everything with Marc, whom you will like, and we pray that Thomas can hang on. I love you very much, I always looked up to you and admired how wonderful you are. I was thrilled when I heard you had a son. I was heartbroken when I heard his predicament. At first I couldn't understand why someone so wonderful would have to deal with something so tragic. It dawned on me though that it was because you are so wonderful. You can make sure to fully appreciate the time you do have. You can make sure his life, however long it lasts, will be happy and blessed. You and Scott have been amazing through all of this, and I'm moved by the strength of it all. I wake up every day and check the blog hoping for a miracle. Some cure or recession. I'm still hoping for it. I love you all. I may be far away, but you are all in my heart every single day.

 
At 5:41 PM, Blogger Lizard said...

So sorry for these hard days friend. I simply cannot imagine. I think and pray for Thomas and you guys often. Thank you for your blog and your transparency. May the Lord hold Thomas dear and close in these days....May the Lord give you unimaginable and unfathomable peace and strength...

 
At 8:38 AM, Anonymous Anonymous said...

May God give you the strength to endure today and may you rely on him for strength in the days to come.


God bless you.

 
At 9:18 AM, Anonymous Anonymous said...

My heart breaks again every time I check your blog. What wonderful parents you are, and we are all so blessed to be included in your lives. I pray daily for Jesus to wrap his arms around you all and pour his love into you. We are all hoping and praying for a miracle - nothing is impossible for God.

 
At 10:00 AM, Blogger Ctelblog said...

Hang in there you two. Thoas sounds great.

 
At 10:14 AM, Anonymous rachel bickle-Stone said...

i am jonesing for thomas. my heart and thoughts are with you guys always. thank you for sharing in a way only you can (everyone who reads this knows exactly what i mean). love you all.

 
At 11:03 AM, Blogger FunkyMonkeyJunk said...

Sarah, thank you for your honesty. I need to hear you share how hard this is. I know it's not always consolation coming from peeps you don't know well, but we are praying for peace in your home. Peace for Thomas for his pain, peace for your hearts as you care for him.

 

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