Sunday, February 22, 2009

Keeping Vigil

The last few days have been peaks and valleys of emotion. Henry has been sleeping most of the time, waking for an hour or two at a time, sometimes three or four. When he first wakes he's generally alert and responsive, can converse and is comfortable. We keep him on pain medication to avoid headaches which are the hallmark of the tumor's progression. As he tires, his requests turn to demands and he begins a manic litany of needs which get more and more frequent and unreasonable. This exhausts all of us, especially as sometimes his waking moments are at night.

During these wakeful moments we recall better times with photos and conversation. He still watches some television but his interest in that has waned recently. He does hum, sing or tap to the jingles for his shows, which brings a smile to our faces and makes me strangely content. He is drinking well and still enjoys some of the foods he always has; orange chips, chocolate, mandarin oranges. We spend our time attentive to him, waking or asleep, and to the girls, keeping them occupied and feeling loved.

It is not clear how much time we have with him. I read an account of survival at sea recently. According to the author, rescue must be viewed as an "interruption to the survival journey" meaning that to look for the end is to lose focus on what is required now. For now we will float, focus on Henry and await interruption.

16 comments:

Anonymous said...

Love, hugs, support, unfathomable respect and awe...whatever I have to give is yours--hope I can give what you most need, wish I could give what you most want.

Anonymous said...

I too wish I could give you what you most want. Sending love to all of you.

Love,
Shanda

Granya said...

As always, a perfect analogy.

Anonymous said...

Sending love and open arms to all of you.

Carol & Bill

Anonymous said...

We are praying for all of you for strength, love and cherished moments.

The Skelly's

Daisha said...

I pray your family every day and wish you all the strength that you to get through. My love goes out to all of you

love
daisha

Tachyon said...

I've been reading about Henry since I had to take a hiatus from nursing school in late October. I apologize for never leaving a comment before now.
How profound and perfect your last paragraph was. I'll remember it forever, because it is absolutely spot on. I applaud you and your family for your courage and grace. I'm sure you have your moments when you may feel that you are lacking those things, but you are incredible. HENRY is incredible, too.
You have a beautiful child who reminds me so much of my five year old boy that it is painful to see how quickly his health has declined these last two weeks.
He is in the most capable of hands with you, your wife, and children by his side.
I'll be thinking of you constantly, hoping for peace and comfort for all of you, as much as possible, as well as an absence of pain for Henry and more good times for your family.

Anonymous said...

My prayers continue for all of your family as I have read your blog each day; you are a wonderful family, doing all that you can do for Henry, who is such a brave little boy, as well as trying to keep life normal for the girls. I echo the previous comments, I wish I could give you what you want. May peace and hope never leave you, even in the darkness of night when Henry is awake and demanding. Hang on to these moments, as they will one day be precious memories. God's blessings to you.

A Friend in Frederick

Anonymous said...

We can only offer you our meager prayers. However, please know that, as those prayers are frequently offered during the wee hours, you and Henry are not alone at that often lonely hour of the nighttime.

We are so sorry you all are going through this

Anonymous said...

Bryan,
I have auto email set up to get your blog so do not always comment but always read and pray for you all. What a sweet boy you have raised and you give such comfort to. He knows he is so loved and I know he finds comfort in that when he does not feel well.
When I wake during the night I will think of you all and pray that if Henry is needing attention at that time that God touch him and make him feel better!!
Our love always to you,Tara and of course the girls and Henry!

Cousin Susan H.

Anonymous said...

Bryan,
I have auto email set up to get your blog so do not always comment but always read and pray for you all. What a sweet boy you have raised and you give such comfort to. He knows he is so loved and I know he finds comfort in that when he does not feel well.
When I wake during the night I will think of you all and pray that if Henry is needing attention at that time that God touch him and make him feel better!!
Our love always to you,Tara and of course the girls and Henry!

Cousin Susan H.

Bianca Castafiore said...

I imagine a small army of people awake in the night, hands to hold your hands holding this darling boy. Thank you for sharing yourselves and Henry -- it is ennobling and humbling. Peace to you all.

Anonymous said...

Our prayers are with you and your wonderful family.We pray you will accept what God has in store for you. God bless your family. Tom in ict.

Anonymous said...

My heart breaks for all of you, but you are in my prayers. I sit in complete admiration and awe of your strength and clarity of the moment.

You have done so much to open others' eyes about realizing what is truly important in life. There is nothing more important than the love and complete dedication you have given this beautiful boy.

Anonymous said...

Words seem very inadequate right now but please know that we're praying for each of you and send our love to your family and sweet Henry. God has blessed Henry with a very special family.

The Leonards in St. Louis

Chris Baer said...

As always, your writing is moving and courageous, Bryan. I know I speak for all of our soccer friends when I pass on our thoughts and prayers.