There is Beauty in Simplicity

I have learned by some experience, by many examples, and by the writings of countless others before me, also occupied in the search, that certain environments, certain modes of life, certain rules of conduct are more conducive to inner and outer harmony than others. There are, in fact, certain roads that one may follow. Simplification of life is one of them. --Ann Morrow Lindbergh

I read this quote and thought of the journey that a family and friends travel when having a child with congenital diaphragmatic hernia. I also thought of how NOT simple and how simple the treatment for CDH - surgery, repair the diaphragm. It sounds so simplistic - yet it isn't and there are so many factors that determine if the little spirit will survive and be the amazing kids that all these survivors of CDH are - or become the amazing spirit that we know they are in heaven.

One of our babes is going through surgery today at John Hopkins and another babe just went through the Tracheal Occlusion in Rhode Island with some issues arising. We hope that the simplicity of our prayers, hopes, thoughts and lung function chants meet with survival of these two little spirits.

This spoke to me - Personally

It is to the credit of human nature, that, except where its selfishness is brought into play, it loves more readily than it hates. Hatred, by a gradual and quiet process, will even be transformed to love, unless the change be impeded by a continually new irritation of the original feeling of hostility. --Nathaniel Hawthorne

And those out there that are the irritation - know who they are....

501 (c) (3) IT IS OFFICIAL as of May 17, 2004

We just received the Advance Determination Letter from the Internal Revenue Service, Department of the Treasury - Breath of Hope, Incorporated is exempt from Federal income tax under section 501 (c) (3) of the Internal Revenue Code. Contributions are deductible under section 170 of the Code. We are qualified to receive tax deducible bequests, devises, transfers or gifts under section 2055, 2106 or 2522 of the Code.

Effective Date of Exemption - May 17, 2004 ;-)

Yahooooooo! All that paperwork, the late nights, the editing, the reading and research PAYED OFF!

Real Integrity

Real integrity is doing the right thing, knowing that nobody's going to know whether you did it or not. --Oprah Winfrey

I liked this. I had to share because I believe at Breath of Hope we give credit where it is due when a good idea is shared, no one takes credit for a job or producing something that benefits all members. Our Newsletter was a combined effort. Without those members submitting stories, without members donations and without the support, encouragement and inspiration of all - it couldn't happen.

As a group that will take credit for all efforts in our endeavors to bring awareness to Congenital Diaphragmatic Hernia we will succeed. There is strength in numbers.

I also believe integrity is doing what you say and saying what you do. My supervisor placed in my review document for my daytime paying job. BoH is what I do to satisfy my heart.

Trisomy 13 - My discovery and the Truth of the Matter

Until Melissa and Bennett-Chadlen I was so uninformed on Trisomy 13. You see I like many heard from the professionals that this was a fatal condition alone and with CDH - even more so. I never knew there were people living with Trisomy 13 into their 40's or that these children were not unlike children with Downs Syndrome (Trisomy 21) and many of these children thrive. I was told they didn't live long. They can learn, they can work, they can go to school - are they not "perfect" - is anyone really? Or are they in their own way?

If you want a child - truly want a child - it does not matter their imperfections and if it does perhaps that may be an imperfection within? No judgement here - some want the perfect life but those of us that have had children with a birth defect - we know this world is imperfect.

Yet sometimes it is the imperfect things in life that are truly the way things should be and should be appreciated, loved and embraced. In doing so you learn to love yourself and then can love others too.

Melissa and Bennett-Chadlen - Thank you!

Links for Living with Trisomy 13 are under the Support Links - and her wonderful letter is also in these links. I encourage everyone out there to read these and start spreading the word to those out there!

Nimkee, I will be sure to help raise the THUNDER for this! ;-)

Why Breath of Hope Exists

Current statistics state that congenital diaphragmatic hernia birth defect occurs in 1 in 2,000 live births in the United States and accounts for 8% of all major congenital anomalies. With the rate of live births in the United States at 4,115,590 in 2004 (See, National Center for Health Statistics), this translates to approximately 1,800 live births with the congenital diaphragmatic hernia birth defect. Cystic Fibrosis occurs in 1 in 3,000 live births in the United States, and Spina Bifida has an occurrence of 7 in 10,000 or 1 in 1,478 live births. Currently, the general public has heard of both cystic fibrosis and spina bifida, although congenital diaphragmatic hernias occur just as often, with fatal results. Currently there is no other organization giving the support needed to those affected by the congenital diaphragmatic hernia birth defect, until now. © March 2007

~ Progress ~

Finally our first Newsletter should go to press this week and the mailing should be by next.

The IRS contacted us a few weeks ago, we had two minor things to complete - update and one should be on the way to us and then to the IRS within the next week. We are on track to have 501(c) (3) approval very soon and that will open the flood gates for more work to be done. We are amazed that they needed two minor things from us!

We also started a new "Thoughts & Prayers List" for our members. Thank you Luke and Jordan - your Moms' were the inspiration.

And our website is progressing. Good things come to those who wait. "Patience is a virtue, catch it if you can, found seldom in a woman and never in a man."

Core of Breath of Hope....

Integrity is the basing of one's actions on a consistent framework of principles. Depth of principles and adherence of each level to the next are key determining factors. One is said to have integrity to the extent that everything he does and believes is based on the same core set of values. While those values may change, it is their consistency with each other and with the person's actions that determine his integrity.

Focus

Recent issues a member commented that I must have the Mission Statement of Breath of Hope on my wall. I don't - just recall reading it and re-reading it among the Board Members to get it right.

Breath of Hope

Congenital Diaphragmatic Hernia (CDH)

Supporting all ~ Searching for a cure

MISSION STATEMENT:

Breath of Hope exists to combat the congenital diaphragmatic hernia birth defect. We are committed to supporting parents, children, family members and friends facing the diagnosis of a congenital diaphragmatic hernia birth defect. We carry out this mission through promoting public awareness, supporting the medical community and encouraging research efforts to one day prevent or successfully treat those diagnosed with a congenital diaphragmatic hernia.

Why A Bumble Bee...as the Logo?

Immortality, rebirth, industry, order, purity, soul, chastity,
messengers between worlds, secret wisdom

In dreams, the bee represents approaching death: one's soul is buzzing
off. They have often been viewed as brave, industrious, clean,
politically harmonious, and aesthetically gifted; these qualities
provide extensive fodder for symbolic representation. The bee
represents perfect community, and although it is weak in body, it is
strong in spirit and wisdom.

In Egyptian culture, the bee is associated with royal hierarchy
because of their monarchic organization, industry, creative activity
and wealth. In Paradise they were the 'little winged servants of God'
only changing to brown after the fall, and, with Eagles, are the only
animals that have access to heaven.