Angel Luke - Face of CDH

Many parents of children who are diagnosed with congenital diaphragmatic hernia find there appears to be some divine intervention which evolves.  From the hospitals we choose, to the random people who come into our lives to make us feel not as alone, confident we can take on anything this diagnoses brings us and who just make our lives better in the worst situation we find ourselves in.  Jean, Luke's Mommy, is probably one of the most supportive CDH parents out there.  She is the hugest advocate for CDH Awareness and Education and she has the most wicked sense of humor.  You have to have a sense of humor to have 9 children!  Yes, nine!  Here is her amazing son's story - grab a tissue box and know you will have tears, smiles and chills just reading it!

In Luke's Mommy's words: 

While I was spending my last hours with Luke, I was trying to keep my wits about me and trying to think of everything that needed to be done before I could let him go. We had Luke baptized by the Priest on call at the hospital and then he had to leave but gave me his pager number to call him whenever I needed or wanted him back.  Before I could let Luke go, I had to make sure that all my other kids were in one place together.  The younger six were with my oldest sister at her house and my older two stayed at our home.  They both work full-time and being 18 and 19 and they can stay home by themselves. I wanted to be sure that Ralph and Robert got to my sister's home.  I wanted them to all be together when they heard the news.

I wanted a priest to come in and just say a few words to help Luke on his way to join all the other angels.  A friend from my parish in Owensville was up at the hospital with us and she was trying to get in touch with our Parish Priest.  No one in Owensville could find him. She kept trying to find him but she also started calling a few other Priests from neighboring Parishes with no response.  The hospital chaplain tried to contact the on-call Priest who had come by earlier to baptize Luke but had left.  For the first time in 12 years, the pager system went on the blink. Heidi (my friend) one of my sisters and some of the nurses in the NICU started calling around looking for a Priest for me, not one could be found.  Like a police officer, whenever you need one, there's never one around.  One surgeon who had evaluated Luke earlier in the day and gave me the news that there was nothing more that could be done for Luke and one of Luke's nurses from earlier that day, went out looking for a priest for me. Both the surgeon and nurse were off for the day. 

A few blocks from the hospital there is New Cathedral in St. Louis.  The surgeon and nurse went there to find a Priest.  (They told me they would “hijack” a Priest for Luke.)  They could not find one there. So they came back, meanwhile, my Parish Priest still was nowhere to be found.  A Priest from a town down the road called Heidi back but he was on vacation and 200 miles away from St. Louis he did offer to come if I really needed him, he'd start traveling back right away. The on-call Priest was finally contacted, he was at his Parish but he was in the middle of a marriage class and he said he'd come in but he was on the other side of town.  My niece had called her mother and my other sister, the Minister from their church would be happy to come in if I wanted, he wasn’t Catholic.  Not that I would have minded, I wanted a Priest if at all possible.  My other sister's husband (who was at the hospital with me) had called their Parish Priest and he was prepared to come into the hospital for me.

While all this was going on, I had five Priests are coming, we get news that the same nurse who had gone looking for a Priest earlier, went back to the New Cathedral and was waiting in the parking lot when she saw a Priest heading for his car. She stopped him and she explained to him what was going on.  He dropped everything and came to the hospital. So now I have a Priest coming to say a few kind inspirational words to help Luke get those wings of his and fly up to heaven. Ironically, this Priest was not a Priest but a Bishop. Yes, one of the NICU nurses from St. Louis Children's Hospital in St. Louis hijacked a Bishop for a patient.  This Bishop was heading to an important meeting and dropped everything to go with this nurse. She must have been pretty convincing. 

Another part of this irony, this Bishop twenty years ago was a Parish Priest at the Parish where I grew up.  He was the Parish Priest that twenty years ago married my husband and me. So Bishop Hermann got to the hospital and he had no idea he was going to help comfort two people who he married twenty years ago.  He said some of the most beautiful inspirational words to help my little boy on his way to heaven.

So I started thinking God knew and still knows I was not very happy with Him because of all that went on with Luke so I think God sent me a bishop to appease me a bit. Not too many people get a "hijacked" Bishop to come to the NICU and say a few inspirational words over their dying son. Even though I still do not have the answer to "WHY?" Luke, I did get a "hijacked" bishop. So I haven't given up on God yet and I very much doubt I ever will.  I'm still very angry with Him and I think it’s going to be that way for a long while. I hope I haven't offended anyone with my story but it was just a little something that has kept me going and I wanted to share it. My faith has taken a blow but it’s still there and with time it'll come back and probably twice as strong. The one point of this story is I'm working my way back slowly into the world and with all of your love and support and the love and support from my family and friends, I'll get there.

Jean - Mother of nine!!! Eight Earthly Angels(Ralph,
Rob,Nick,Abby,Anna,Clint,Joe,Sophie)-One Heavenly Angel-Luke Matthew
6/12/2007-6/12/2007-FOREVER IN OUR HEARTS!!!!!

Will You Help - Raising a Little CDH Awareness!

Do you see a need in your community to help families who have a CDH child or are expecting a CDH child?  Do you see a need, not being met which we can help you with?  If you do, please contact us at cdhawareness@breathofhopeinc.com.

Here are examples of needs Breath of Hope helps to meet:

Emily, ^Baylee's^ Mommy, will be sending out Birthday Cards to all families of angels on our mailing list!  As many parents of angels know, not everyone remembers their birthdays - it is nice to know we do!

Each year, for the last four years, we have participated in the United Way's Day of Caring, we get volunteers to help us assemble 500 infant hand print kits, most which are donated to the University of Virginia Medical Center's NICU.  Every family who has a baby admitted will receive a hand print kit to capture that moment.  (Not just CDH families - but all families there!)

Nationwide and Internationally too - we send Expectant and New Parents a kit with our Medically Reviewed publications, hand print kit, receiving blankets and a NICU Baby Book and we add in ribbons and wristbands.  Vital information is given to an expectant or new parent of a CDH baby.  We also have volunteers all over who provide our publications to hospitals, so they can give them to families expecting or who have a newly born CDH baby.

We always need anyone to write their Governors, Mayors and Congresspeople to request March 31st be Congenital Diaphragmatic Hernia Awareness Day!  This is also a great opportunity to make those aware in your community!  We provide all materials as guidance and if your city, town or state issue Proclamations or Resolutions - you keep the document!  We also encourage you to have events - small are large in your area to bring attention to this often overlooked birth defect.

We will be having the Jazz for Peace Event in Charlottesville, Virginia on March 23, 2012.  This is their 10th Anniversary and will coincide with Breath of Hope's Congenital Diaphragmatic Hernia Awareness Day Campaign which will be into it's 5th year!  We hope to bring more awareness to congenital diaphragmatic hernia, Breath of Hope and Jazz for Peace in the Charlottesville, Virginia community!

SAVE THE DATE - Week of June 18th, 2012 - our 3rd Annual Congenital Diaphragmatic Hernia Summit will be in Denver, Colorado - this will be the first time on the West Coast!  We need volunteers to help if planning to attend!  Our goal is to have more families enroll in CDH Research Studies, learn about the amazing hospitals and their doctors and nurses in that area and also meet with others who share their journey with CDH.  Each year thus far, we have learned of astonishing information from those doing research on congenital diaphragmatic hernia - many times before it is even published to the public! 

Breath of Hope also helps with any Fundraiser to help raise funding for medical research for CDH or which would benefit CDH patients, support for CDH families and help off-set costs of medical expenses for CDH families.

Please contact us at boh@breathofhopeinc.com if you would like to help or you have ideas to help your community!

As always - Thank you!

Jaxson's Jog - Fundraiser in Pennsylvania for CDH

Jaxson's Jog is a 10K & 5K Run plus a 2.5 Mile Walk in Support of Children with Congenital Diaphragmatic Hernia (CDH).  Your registration makes a difference!  All proceeds benefit Global CDH.

Summary of Race Details:

• REGISTER online today, click here (note: registration says 1 mile walk, but it is 2 miles)
• Race date: Saturday, May 22, 2010
• Race location:  North Park Boat House, Allison Park, PA 15101
• Race day registration from 7:30 am - 9:30 am
• 10K and 5K Race begins at 10 am; walkers follow
• Registration Fee: $20 for adult runners/walkers, $10 for youth (18 or younger)
• Course Info: For 5K course, click here; for 10K course click here
• Hotel: Holiday Inn Pitt North is offering a special rate of $79 - click here for details
• Stick around for the post-race festivities - awards and Chinese raffle

Follow Jaxson's Jog on Facebook:  facebook.com/jaxsonsjog
To make an online donation to Global CDH in the name of Jaxson's Jog, click here.
There are lots of ways to help – sponsor or make an individual donation, register as an individual or a team to run/walk, or make an in-kind donation of food or gift for the Chinese raffle.   I hope you will strongly consider supporting the families and children with Congenital Diaphragmatic Hernia by participating in Jaxson’s Jog!

Happy Birthday Jaxson!  We hope your day is wonderful!

Happy Mother's Day

 

To all mothers - mother's of these amazing children - both the angels and the earthly angels, grandmothers and great-grandmothers out there too!

Being a full-time mother is one of the highest salaried jobs... since the payment is pure love. ~Mildred B. Vermont

Mothers hold their children's hands for a short while, but their hearts forever. ~Author Unknown

Mother love is the fuel that enables a normal human being to do the impossible. ~Marion C. Garretty, quoted in A Little Spoonful of Chicken Soup for the Mother's Soul

A mother's love is patient and forgiving when all others are forsaking, it never fails or falters, even though the heart is breaking ~ Helen Rice

A mother is someone who dreams great dreams for you, but then she lets you chase the dreams you have for yourself and loves you just the same. ~ Unknown

The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new. ~ Rajneesh

Congenital Diaphragmatic Hernia Summit - Philadelphia, PA

(Organizations in Alphabetical Order – more are welcome!)
Breath of Hope, The Children’s Hospital of Philadelphia, Global CDH,
Parker Reese Foundation, Project Sweet Pea

June 23 -24 2010 – Sheraton Hotel, Philadelphia, PA

To reserve your hotel room at a special rate of $129.00/night ($100 discount)
(Copy and paste the following link into a web browser)
http://www.starwoodmeeting.com/StarGroupsWeb/res?id=1004139524&key=C2

You can also call the Sheraton at 1-888-627-7071, please mention the Breath of Hope Block (50 rooms)

The Center for Fetal Diagnosis and Treatment at The Children's Hospital of Philadelphia coordinating Speakers for June 24 and/or 25

Dhreams Research Presentation – Julia Wynn

Presentation by Willie Skaggs, Councilor – How to best deal with friends and Family – who just don’t understand - open session for families to get ideas and strategies

June 23 – would be introductions … The Organizations all represented will have time to do presentations.

June 24 – (currently open)

June 25 – 10 AM – Dhreams – Presentation and description of Genetics and their study. There also will be forms there and possibly a certified phlebotomist to take blood samples for those who would like to participate.

June 26 – Visit to the Philly Zoo - the oldest Zoo in the United States – we are working on a group/discounted rate we will need a RSVP in order to reserve this at discounted rates and a possibility of having access to more attractions – such as a Swan Boat Ride or Pony Rides! boh@breathofhopeinc.com to let us know if you want to attend!

June 27 – The Children's Hospital of Philadelphia's Center for Fetal Diagnosis and Treatment's Fetal Family Reunion - or those traveling and who want to take advantage of the room rates through the Breath of Hope Block – please feel free! We will provide water and drinks through the conference sessions and are hoping to provide breakfast and possibly a dinner or lunch.