With Every Breath I Take

Testify To Love - Avalon Lyrics

All the colors of the rainbow

All of voices of the wind

Every dream that reaches out

That reaches out to find where love begins

Every word of every story

Every star in every sky

Every corner of creation lives to testify

For as long as I shall live

I will testify to love

I'll be a whitness in the silences when words are not enough

With every breath I take I will give thanks to God above

For as long as I shall live

I will testify to love

From the mountains to the valleys

From the rivers to the sea

Every hand that reaches out

Every hand that reaches out to offer peace

Every simple act of mercy

Every step to kingdom come

All the Hope in every heart will speak what love has done.

I love this song - especially the middle part. Sometimes I wonder why God allowed me to be born with CCHS, but when I hear "With every breath I take I will give thanks to God above", I realize it doesn't matter if those breaths come from a ventilator. I am God's original creation, he formed my every cell, I am His child, and I am perfect the way I am!

Heartmade Blessings

"Heartmade Blessings is a world-wide group of volunteers dedicated to providing hand-crafted items to those people suffering a loss, tragedy, or going through a rough time that need to be reminded of the simple fact that people care.  The organization was founded in March, 2001.  Heartmade Blessings come from all the wonderful people who donate squares for afghans and bearghans. They are also made possible through the efforts of the warm, caring people who donate their time in assembling and organizing the distribution of these items to those in need. We truly believe these people are nothing short of a "blessing" themselves." http://heartmadeblessings.org/

I recently received one of Heartmade Blessings' beautiful Comfortghans while recovering from aspiration pneumonia.  It was made just as my mom had requested, with my favorite colors and images (see photos below), and I absolutely LOVE it!  Thank you, thank you, thank you to all the dedicated volunteers who made my wonderful Comfortghan - you truly have been a blessing to me! - Love, Deborah

My Beautiful Comfortghan

Warm and Toasty

Each square and the tote bag comes with a tag from the volunteer who made it.  Thank you to all those who made my Comfortghan!

If you would like to request a comfort afghan or a bearghan please email Heartmade Blessings at heartmadeblessings@nc.rr.com and provide the following information:

1. Your first and last name and e-address.
2.  Please indicate if you are requesting a Comfort Afghan, Operation Purple Heart afghan or Bearghan.  Bearghans are sent for children ages infant to approximately 6-years of age.  Children age three to six receive a smaller sized Comfort Afghan.
3. Recipient's first and last name.  
4. Verified mailing address the assembler will be sending the comfort afghan to.
5. Reason for the request (i.e., illness, bereavement, etc.).
All information provided will kept confidential and will not be shared with anyone outside of Heartmade Blessings.

A Meeting of Friends!

Colton and Deborah

Lucy, one of our Mom moderators, and her husband Matt, brought Colton out to Ohio from North Carolina for some very specialized autonomic testing last week.  It just happened to be at the same Children's hospital that I take Deborah to.  We talked for several weeks about meeting, and then it almost didn't happen between Colton's hospital schedule and Deborah having a mild aspiration pneumonia!  However, we finally did get to meet for a little while in the lobby, and we got some great pictures too!

Lucy, Matt, and Colton

Colton and Deborah Again

Group Photo:
Matt, Colton, Lucy, Deborah, and Patricia

Deborah's Story

Hi!  I'm a young adult with CCHS (Congenital Central Hypoventilation Syndrome.) Normally, you don't have to think about breathing - the autonomic center in your brain tells your body to breathe even when you are asleep.  In kids born with CCHS, however, something goes wrong with this center, and they "forget" to breathe, especially while asleep. CCHS used to be called Ondine's Curse (from the German myth about Ondine, a water nymph who curses her unfaithful husband to cease breathing if he should ever fall asleep again.)  I have a trach and am on an LTV ventilator 24/7.  I also have a J-tube for continuous feeds, and use a wheelchair to help me get around.  I take several medications every day, and get weekly SQ IgG infusions of Hizentra.  I see a number of specialists (pulmonary, ENT, neurology, and cardiology, etc.) to help keep me healthy, and I also work with some terrific therapists in occupational, physical, and speech therapy.