Friday, February 20, 2009

Giving and Gratefulness

Henry continues to give and we continue to be grateful.

Yesterday he gave us the opportunity to spend all day surrounded by caring and loving family and friends, gathered in our living room around the fire. He had pain, agitation and discomfort for parts of his day, but with medication he rested, slept and had several hours of calm alertness during which he conversed and entertained. We cried, we laughed and were grateful.

After a blessedly full nights' rest, Henry awoke with complaints of a minor headache. We administered his morphine twice before it finally subsided. He wet his small bed we've moved into the living room and while changing the sheets, he sat with me. He has never been an overly affectionate child. He prefers to sit alone, preferring proximity to touch - but this morning he sat with me quietly. I have longed for this and he obliged me.

I have chosen the mantra of gratefulness of late, focusing on the things we have to be thankful for in the midst of this ... thing. I try to be careful about calling it something ugly or bad. There has been no intention in any of it, sad - yes, evil - no.

Anna had a tough time this morning. Sophie wouldn't go in to school without her either. We've kept the girls home for a time to allow them to normalize themselves again in hopes of sufficiently collecting themselves to do what will help them most of all - routine.

Henry lays sleeping calmly, his small chest heaving rhythmically while the background of Clifford dins in the background. It's a quiet and pain free moment and we're grateful.

22 comments:

Anonymous said...

God Bless you. You are amazing.

Ami Czorapinski said...

Praying as always. May God give you the strength that you need and may God heal Henry.

ms.t said...

In tears as I read your blog, your plight. I too am grateful for little Henry's good moments. Thank you so much for allowing me into your most private moments. Sending love and prayers your way. Kisses to Sophie and Anna.

Anonymous said...

I will always be grateful to my hero Henry!

shadowfax said...

Just wanted to say that I am still here, read every post, and am thinking about you a lot. Thanks for continuing to share, and I am glad that you are having good times to be grateful for.

rlbates said...

Can I just echo the above commentors. Wishing you more good times

Anonymous said...

God Bless You all.

Libby said...

May God Bless You

Cassanndre said...

A link on Shadowfax's blog sent me over this way probably about a year ago. Thank you for this blog you keep and for sharing your family's sweet spirit. You are all in my prayers.

Hillbilly Fairy said...

blessings to you all.

Anonymous said...

Daily our thoughts are with you and your lovely family - Hugs to all
Linda and Val

Anonymous said...

My thoughts and prayers continue to be with you and your entire family during this most difficult time. May you feel the peace that only God can give at such a time as this.

Love from Frederick MD

maura said...

Many friends and coworkers of Jane's have you in our thoughts and prayers

Kim Maynard said...

No words or actions can express the sorrow and pain that I feel for you and your family. Your courage and strength are an inspiration to us all. I hope you find peace within yourselves and your family. Please know that you are thought of frequently and cared for deeply.

Anonymous said...

Prayers from New Hamsphire.
nk

Anonymous said...

Thank you for keeping us updated. I am also grateful for the less painful moments for Henry and for all of you. I am hoping that with the girls being home this weekend it will help everyone. Please tell Anna and Sophie we are thinking of you all and praying for more pain free days. We are here if you need anything or if you just need to talk.
Love,
Gina,Craig,Carinna and Corey Householder

Ms. Fiddler said...

I am amazed every day at the gifts you... and Henry.. give me and my family. You remind us of the importance of love and family, and peace in our lives.... you remind us of the value of each minute and the joy that can be found in silence....

Love from the Fiddler's on the Eastern Shore

krissyheflinjames said...

Annabella and I have been praying for Henry and your family. May you find strength through God's grace and mercifulness. Our thoughts are with you everyday.

Anonymous said...

Henry and your family our in my daily thoughts and prayers. Your posts are a reminder that even the smallest child can bring miracles to others. Your love for your son shows so much. Even through your pain, your thoughts of this experience has touched my entire family. We are forever gratefuly for the unity that you have shown to us. We pray for quiet, memorable times for your family with Henry and pray for a peacefulness to surround him knowing what a blessing he has been to SO MANY. We love you Henry!

Maury said...

I cannot associate the words "evil", "ugly" or "bad" with anything in your loving home - and especially not Henry's disease. Henry has taught me so much about laughter, determination, spunk... well, everything that a 4 year old can teach an aging woman about hope, and giggles. I consider knowing him a blessing in my life as I do all of you - but especially Henry, who has dealt and continues to deal with the unthinkable. And pls. tell Anna and Sophie how amazing I think they are with Henry during this time. No one could want better sisters. Or parents or grandparents for that matter.
Hugs for letting me get to know you all - MizMo

Anonymous said...

Bryan, your family is in our thoughts and prayers each day. May the love of your family and friends continue to give you strength.
Love,
Chris and Matt Isleib

Anonymous said...

My prayers are with you and your family. Tom from ict