Tuesday, February 17, 2009

What a way to go

Step one: deal with the impending death of your 4 year old son.

Step two: be thankful for this being the way he will go.

Henry is comfortable, thanks to some morphine for headaches. His personality, intellect, and sense of humor is intact. He's sleepier and sleepier, almost noticably changing daily. The kid who barely slept 8 hours a day on the chemo that everyone assured us would snow him is up to about 15 hours of sleep with night and naps. He's loving food, he's enjoying rituals like cartoons, reading books, doing puzzles. He enjoys family, visitors, new experiences.

Our hope is that he'll just continue to get sleepier and sleepier, until he passes. We've seen some other kids with Henry's tumor not be so lucky. We've seen some other kids with other cancers really not be so lucky. And of course, children die all of the time from other causes, traumatically, in the hospital, unpredictably. What a luxury to be able to have this time with him, to tell wrap him in love and comfort.

There's so much to be thankful for. I just have to keep reworking step one.

30 comments:

...tom... said...

...

As always, many offer their thoughts and prayers and support. Even as we realize how truly inadequate they are.


Praying for a peaceful journey for both of you; for you and all your loved ones.


...tom...
.

Rach said...

Everytime I click my blog reader I hope for another post like this - something telling us how you guys are faring. I hope that you, your husband and your children are enjoying every minute you have, and that you are creating memories that will last a lifetime.

FrankandMary said...

I have dealt with this in the past, but not with my own child. I quite frankly have read the blog before but can never think of the "right" thing to say. I do not know how to offer true support over the internet...without it sounding so distant & trite.
I wish your whole family as much comfort and peace as possible.
~Mary

Indigo said...

This dear one brings all new meaning to appreciating the moments of our lives. When all one has left are mere moments. I can't imagine losing a child to this disease. I have lost friends and been there for yet more who are battling just to live. I will be keeping Henry in my prayers on the smoke, may Creator gently carry him toward what awaits. (Hugs)Indigo

rlbates said...

Nothing I can add to your post or the other commentors. You and your family remain in my thoughts.

Anonymous said...

Mary sent me to your blog. My little sister is 17 and she is in remission/NHL. Our family worries for her every day but we try to keep our feelings in check and have as normal a family life as possible.
I will be praying for Henry every day.
....Chloe....

pelican said...

Thank you so much for sharing some of your journey with Henry's illness. It is very generous of you and your family to let others see how you all are walking this path. I very much hope that Henry stays comfortable and that this is as easy for him as possible. You and your family are in my thoughts.

Anonymous said...

I too pray for a peaceful journey for my hero Henry, and peace for his family and friends.
k3p3

a corgi said...

hi; a friend directed me to your journal; I'm so sorry about your son, Henry; such an honorable name, the name of my brother and the name of my little grand-nephew of a month old.

I will pray for you all; I will pray that Henry's passing will be a peaceful one that he basically falls asleep here on earth and wakes up in heaven.

I'm so sorry.....hugs to you all.

betty

ADB said...

I can only wish you strength in dealing with this very challenging situation - only words and most inadequate. I hope that Henry can be made as comfortable as possible in the short timespan he has left with you.

Guido
http://atlantic-lines.blogspot.com

Sugar said...

i pray that henry will cont to be comfortable during his remaining time, & that his passing be peaceful & calm.
Also, praying for you, family, & good friends.
may God send an angel, to hold henri tightly in her arms, & bring him safely to Heaven, when the time is right.

Robyn said...

Hi I am coming by way of Call for Support. I cannot imagine what your feeling right now! I have lost friends to cancer, and family but not a child. I will pray that his time left is peaceful and painful! I will be praying for your sweet son, and your entire family!
Robyn

Margaret Polaneczky, MD (aka TBTAM) said...

I hope you and your family can continue to enjoy this time together, and that Henry's journey is a peaceful one for him.

net said...

(((Doc, Henry & family)))

Joann said...

Hi... Mary sent me to your blog. I'm so sorry for all your having to deal with, and so sorry for Henry. I have a son, and just can't imagine the pain you are feeling as a parent. I'm glad that you have some comfort in the TIME that you have with him, you'll have some good memories. My heart crys for you, know that I'll being praying for peace for Henry and for your family.

Julie said...

I am so sorry about Henry. I am praying for a peaceful journey.

Cousin Dave said...

We think about you so often.

Your ability to be thankful is inspiring.

THAT GIRL said...

As always, I am amazed at how you so eloquently communicate your life in this blog.. you write so little, but say so much.

Praying for you and your family.

Beth said...

I too, wanted to just let you know how grateful I am that you continue to share your stories. You have a way of saying so much so simply, it is beautiful. There is nothing I can say that hasn't been said but I wanted you to know that your writing is being read and it is appreciated on many levels.

Dragonfly said...

So glad he is comfortable. Praying for and thinking of you.

Keith said...

I just spent the better part of the afternoon and evening going through your past year and a half of writings. I don't know anything I say can make anything better, but I wish you all the strength as you continue to deal with this. Even in his youth, Henry seems to be a very inspiring fellow.

A Doc 2 Be said...

My prayers for you, your family, and little Henry. I will hope that he continues to smile and giggle and laugh when awake, and sleep easily when the he requires rest. I will pray for a peaceful passing.

As the parent of a son who died some 22+ years ago of SIDS, there is nothing anyone can say to help alleviate the enveloping sadness yet it does fade and is replaced with the many memories left behind.

Your courage to remain thankful while getting to spend quality time with your little man is a testament to you. Not many are capable of that -

In hope and faith,

J

Bianca Castafiore said...

You took my breath away; Your writing, your situation, is absolutely elemental and trenchant.

Thank you for sharing the love, hope, and understanding, the pain and fear -- mostly, thanks for the glimpses of Henry.

There are so many people "out here" who want to hold your hands... I wish we could.

Poppy Q said...

Me and my mum send you warm hugs from across the ocean in New Zealand.

Poppy and Mum Q

yamiblue990 said...

i hope your son dies peacefully in his sleep. you shouldn't have to lose him so soon but at least he'll be in a better place hopefully.

CarrieWannaBePA said...

I am so sorry that your heart is breaking. You are an incredible wife and mother, and physician. As I read your posts I find myself wondering how many of us could walk this road with such grace. I think of your family often, and wish you all peace, comfort and love.

Laura in L.A. said...

I am praying for Henry and for your family every day.

Love, Laura

KC said...

Thank God your child is feeling your love, of peace, of comfort every day. My thoughts and prayers are with you and your family.

Joann said...

I know that you are spending precious time with your son, I hope that he is comfortable and that you are able to enjoy this time with him.

Anonymous said...

Hang on to each other and don't let go.
miss susan