Thursday, February 12, 2009

Rare is Precious

Henry has been so, so tired lately. His sleep seems to be getting longer, his days shorter. He spends most of his time on the couch, nibbling and watching his shows, humming to the songs or answering the questions posed by the characters. He is sometimes coaxed into an errand, a painting project or some other off-couch activity, but he fatigues quickly.

Each night when we put him to bed, it seems like we're turning a page in the last chapter, nearing the end of the story. I feel like my kids asking for another book. More. Please more.

The reality of this is becoming more palpable by the day. Our visitors are more frequent, our conversations more urgent, our plans more tangible. In so many ways I feel like we're losing him slowly even now - his body is getting heavier with his eating, hiding his features behind his increasing cheeks. His occasional hobble toward the bathroom is practically his sole exercise. His nap schedule is more regular and lengthy than it has ever been. None of this is typical of childhood. His mental acuity remains in tact and he jokes and his wit is sharp. We feel lucky that his disease has been merciful to us this way.

When you were born, my love
A bag of precious gems were poured out to us.
Although they seemed innumerable,
we knew they were not, but refused to count
for they seemed so many and days so plentiful.

As they dwindle, my love
and as I am able to count them - shimmering in my hand,
and am forced to pay out,
one at a time,
to the passing sun,
they seem all the more precious, my love.

I watch the way they reflect the light,
How each is unique,
special, different.
I see my face in the reflection, my love.
And I hope always to find yours looking back.

One day soon,
the last sun will rise to collect its toll.
And I will reluctantly, sadly,
with an open palm
give over what was never mine,
but only lent for too short a time, my love.

I will miss you,
but will reflect lovingly on those gems
that we had the privilege to care for,
to witness and to tend.
For each of those gems have left me richer
than I can have imagined otherwise, my love.

For now, there are but precious few, my love
remaining in our care,
and while we wish for more, my love
We're ever so grateful for the one that is today.


Anonymous said...

I know your heart breaks! Thank you for sharing this with all of us. You put so much emotion in your writings and we feel your pain along with your family's pain. Our love is with you all!

Cousin Susan H.

Jane said...

Amazing Bryan.

Anonymous said...

Words escape me as to what to say that could comfort you all or take this pain away. Henry has taught us all so much. Please know that your friends are here to lean on in whatever way you need.

Love, Julie, Brad, Patrick, Andrew and Samantha

Anonymous said...

Through all the tears and heartache you have always found the strength to be the best parents for your children. The love you show to them has been a huge lesson for me. I wish there was something, anything, I could do to ease your pain. You have a huge support club and if there's anything you need, day or night, just ask. Thinking of you always!


Anonymous said...

Our hearts ache with yours, knowing your pain is immeasurable. I am so thankful that Henry was blessed with a family such as yours and I hope you will find comfort in the knowledge that, although he has been here for such a very short time, you have given him all that truly matters in life - a warm and devoted family, limitless compassion, extordinary strength and, most importantly, your unconditional, unwavering love. Dawn

Steph said...


I'm so sorry!

I think about Henry so much!

Jen said...

I don't know what to say other than that we're out here, listening to whatever you need or want to say.

We're all saying "please, more" with you.

Ami Czorapinski said...

Thoughts and prayers as always.

Anonymous said...

The perspective you offer all of us as you deal with the circumstances that Henry and your whole family face has been incredible. My heart has been breaking a little more each time I have read your recent posts. The message is poignant. The poem was beautiful and conveys a significance no one should ignore.

With continued thoughts and prayers,
-- Rob K.

Leda said...

Just from reading your entry, I am forced to look back at how it was for Talia, during her last days. She stayed in bed, watched her favorite cartoons, even sung the songs, but never got up. Our children are amazing...and that doesnt even begin to describe them. I can picture little Henry answering the questions from the TV. Please give him a big hug from me. I feel so honored to have met you and your beautiful family. You will be in my thoughts, and I will be praying for your family and Henry every day and every night.

Anonymous said...

Your family is in our prayers daily and our thoughts constantly. Thank you for teaching us all to appreciate our "gems".

The Hebbs

Anonymous said...

Love yall!
Susan P. Vallotton

Anonymous said...

God will give you the strength you need in the coming days, just as he has over this entire journey. My heart breaks for you all.

Julie Routzahn

Anonymous said...

Heartbreakingly beautiful poem. Constant thoughts for strength and peace to be with you all in this unimaginable journey.

Anonymous said...

Sending your family lots of love. Even though our pain is still fresh, we are here for you if you ever need to talk. Just love him. Hold him, kiss him, and tell him that you love him over and over. We are happy that his sense of humor is still intact. The kids are simply amazing. No matter what is thrown at them, they adapt and somehow still manage to find the joy in life. Our hearts are with you.

Wayne, Shirley, Fiona, and Angel Sophia

Anonymous said...

Words escape me, you know we are thinking of you and wishing you peaceful moments.
Linda and Val

Anonymous said...

I continue to pray for all of you. Your words are so inspirational.

Anonymous said...

Truly beautiful and inspiring. My heart goes out to you, your family, and Henry.