Tuesday, February 24, 2009

Wakeful Time

Henry continues to rest quietly for the most part. Occasionally he complains of a headache and the fact that he does so calmly with words tells us he is not in acute pain. We keep him on a steady stream of medicines for any of that pain.

He does arouse for brief periods here and there during which we can administer medicines and tell him we love him. He signs 'I love you' back - what a blessing he knows how to do that. He'll blow kisses. He excuses himself after each burb - which have become so very frequent - sometimes even in his sleep. He'll ask for juice with a sweet 'yes, please'. If he's awake for any duration, we begin reminiscing about his life to help him recall.

He had a very wakeful period today starting at about noon. He decided he wanted ice cream and sat up on Tara's lap eating. He appeared tired and we laid him back down only for him to say, "I wanna sit in Daddy's lap now."

We sat together and he ate mandarin oranges (or as he's says 'Mandarinin'). For a time we concluded he thought he was in the hospital, requesting to see the menu and insisting that he wanted to order himself. At the moment this began we were recalling the food service worker, Ms. Eunice, that was always so caring, taking Henry's orders and bringing his food.

For a time he also hallucinated about being back at daycare, this spurred on by a call from there with good wishes and thoughts from the children he calls his friends and the teachers he loves. He talked about rearranging the cots for nap and putting them away in the closet. I'm not sure if he was seeing this as he recalled it happening or if his capacity to relate memories now just takes place in the present.

After a time these visions became irritating, as if someone was bugging him in a bad mood. He threw his blankies 'down the stairs' but then cried that he wanted them back. They were just at the foot of the bed. At one point he seemed asleep, turned over toward me, opened his eyes and crowed like a rooster. These continued to become less pleasantly entertaining and more disturbing and upsetting to him so we medicated him for agitation and sleep. It was so nice and unexpected to have additional meaningful conversations with him.

12 comments:

Anonymous said...

Treasure these times of Henry's wakefulness even when he becomes so irritated; bless his heart and yours and Tara's and the girls' too. I walked this road before, not with a child, but with my husband; I've also had an adult child who is in remission from cancer. These experiences cannot in any way compare with what you are going through with Henry, such a young child. Keep strong; many are praying for all of you.

Your Friend in Frederick

Anonymous said...

My heart breaks for your entire family. You, Tara, and the girls are so strong. Henry is an amazing little boy and although I have never physically met him, I am in love with him, his courage, his strength, his humor, etc.

Your family is in my thoughts and prayers. My son says a prayer for Henry, you, Tara, Anna and Sophie evernight at bedtime. I can't imagine a positive to all this pain you and your family feel but it has taught me to hug my children more and tighter every day.

Thank you for that Bryan. You are amazing.

Love to you all.

Libby said...

(((HUGS)))) from a complete stranger who cares deeply.

Anonymous said...

Love from the Eastern Shore.....

rlbates said...

You all remain in my thoughts and prayers.

Anonymous said...

We Love Yall!
Aunt Reba and Susan

a corgi said...

your family and Henry are in my thoughts and prayers

betty

Anonymous said...

Just checking in on Henry this evening. Thank you Brian for sharing these tender moments. My thoughts
and prayers are with all of you.

pelican said...

Thank you for continuing to share Henry with the world. He and your family are in my thoughts.

Anonymous said...

Peaceful rest for all the Shecks this evening.
nk

Anonymous said...

Just as I cannot pretend to understand the depths of your heartache, you surely cannot understand how deeply your words, your strength, and your love have impacted my soul.

I pray for peace, gentle sweet moments, and continued strength for all of you.

Anonymous said...

Thinking of you all tonight. Many blessings.