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Greetings! |
It is hard to believe December of 2008 is already here. Where did the year go? For It's My Heart, 2008 has been a time of magnificent growth and we would not have been able to accomplish all we have without the support from each one of you. It is our hope as the New Year begins you will continue to make the time in your schedule to participate in the many events we have scheduled. If you have not already registered for CHD Lobby Day for February 10, 2009, please go register now! You do not want to miss the opportunity of a lifetime. If you have any questions or want more information, be sure to check out the details online and if you still have questions, then email advocacy@itsmyheart.org. We recognize that attending this event in Washington D.C. is not possible for all, so we have created a way for you to be part of the Lobby Day. By sharing your story, you will help promote the awareness needed in congress. Please email your Heart Story to heartstories@itsmyheart.org. The stories will be compiled into books according to the state you reside. The stories will help the Representatives reading the stories to know they are working for you! We have been asked who should send stories. All stories will help promote awareness. Anyone who would like to share, please do; parents, grandparents, siblings, aunts and uncles, etc. Another event in 2009 you don't want to miss is the National CHD Awareness Run & Walk - Noah's Legacy on February 21, 2009. This is our third walk and will be held at the Sam Houston Park in Houston, Texas. This year we have added a run earlier in the morning for all those who enjoy running. Following the run/walk we hope many will join us for the first CHD Awareness Festival. There will be many fun activities, informational booths, door prizes, rides and much more including lunch provided by Chick-Fil-A. Representative John Culberson of Texas will be our special guest speaker during the ceremonies to show his support to the CHD community. REGISTER NOW! IT'S FREE! Last but not least, before we know it February will be upon us and CHD Awareness Month. It is our goal to help bring awareness throughout every community, whether big or small. If you would like us to recognize your CHD event in our calendar and National Newsletter, please be sure to email info@itsmyheart.org. If you are contemplating how or what to do, we would love to share ideas about what has worked for our other members. I would like to close with a special request to check out the IMH Wish List online and in this issue. You might have many items just sitting around or know someone trying to locate an organization to support. Remember, donations recieved by December 31st that are tax deductible IMH will provide a tax receipt. Each item brings us one step closer to supporting ALL those affected by CHD. From the Heart,
Corrie Stassen
National Executive Director
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Quote of the Month |
"Love is not written on paper, for paper can be erased. Nor is it etched on stone, for stone can be broken. But it is inscribed on a heart and there it shall remain forever." |
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| Volunteer Meetings |
Thursday, December 11, 2008
Meeting times and location vary by chapter.
"...no matter how big government gets, and no matter how many services it provides, it can never take the place of volunteers."
- Ronald Reagan, 40th U.S. president
For more information in your area, go to www.itsmyheart.org, Click on "IMH Chapters" to see specifics about upcoming events. Make sure you sign up on line to receive e-mails from your chapter by clicking on the link at the bottom of this email.
As always, please be considerate about germs and take precautions if you've been around anyone who has been sick. Most of our children have compromised health. |
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Dr. Heart to Heart |
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My daughter has several heart problems. We are always waiting for the next surgery or next medical problem. I get especially sad around the holidays. Is this normal?
Yes, many parents have expressed sadness around the holidays. Holidays are a pretty typical time for emotions to be at an all time high. Friends and family may not understand the emotional struggles having a child with Congenital Heart Defects.
Society has unwritten rules and norms for emotions. When parents have a child with medical needs the rest of the world cannot understand the flood of emotions. Many parents have not understood that what they are going through is grief. Grief is not reserved only for those who lose their child. Acknowledging that your grief is real is important. Life may not be what you originally expected when you planned to have a child and saw the plus sign on the pregnancy test.
Grief can sneak up on its victims at unexpected times. Seeing another child the same age or realizing the opportunities and experiences that were lost during hospital stays or unhealthy times.
Denying or suppressing the feelings will not allow you to work through the grief process. You may go back and forth through the steps, but give yourself the right to feel those emotions. Talk to others who understand or find other ways to express your feelings. Writing can be therapeutic for some parents. Share ideas on the IMH Yahoo! group. It might help another parent!
Those experiencing bereavement may find being in a support group is helpful. Grief is real and can lead to depression if healthy outlets are not available. If you find that others around you are not able to support you during difficult times, find someone or something that allow you to express yourself.
Dr. Heart to Heart would love to hear your questions, please e-mail newsletter@itsmyheat.org. |
| Heart Journey - Harrison Root |
Harrison's story as told by his mother, Deborah Root:
Two weeks late, my son was delivered by emergency c-section on December 2, 2004 because his heart rate was dropping. My husband watched the whole thing and when Harrison came out, he did cry but looked very blue. He asked if that was normal and they said they would like for the baby to pink up so they were smacking his feet. They brought him to me for a kiss and then rushed him to the NICU. They explained to my husband that he may have a heart defect. Harrison was born at 1:01 AM and by 8:00 the pediatric cardiologist was in my room with a diagram of Harrison's heart defect, Tetralogy of Fallot. From that moment on, everything moved very slowly, once piece of information at a time. Then the second day of his life it was decided that he needed to be transferred to the Children's Hospital of New York for surgery. I could not handle seeing my baby in the NICU - so big and yet so sick. He was easily the biggest baby in there, 9 1/2 lbs. but he was on a respirator and sedated. Harrison struggled with some lung issues so his surgery was postponed for a week. He was scheduled for a full repair on December 13, 2004 at 11 days old. He started to recover quickly and impressed everyone. Within another week, he was sent back to our local hospital for recovering a little more and mostly to get the hang of drinking from the bottle. The roller coaster was set in motion again. Everyone at the other hospital wanted to do things their own way. They ignored previous doctor's notes and while feeding him the first time via the NG tube, he spit it all up right away. Turns out he needed to be fed a little slower. Days went by and we started to think he would make it home by Christmas. One day holding him all of a sudden I saw a hole at the top of his surgery scar. They assured me it didn't look bad or infected but would call his surgery team at the other hospital. Within a day, the tests came back bad and without even telling us they transferred him back to Columbia Presbyterian Hospital. We were devastated he had a staph infection. This recovery was worse than the heart surgery and actually scarier since no one could say for sure what would come of it. They had to open him back up, clean out the wound and stitch him back with not-as-pretty stitches since the skins was no longer healthy. After struggling with many different nurses, trying to get them to give him a little more time at feedings, he finally came home to us on January 19, 2005 with a Broviac line. Not what a new mom and day expect by any means. Since then we have still been reeling from medical bills, the constant wonder of what if and what will come. I always wonder what it would be like to give birth to a healthy baby, have them handed to me, sleep in my room with me, hear their crying and comfort them from the fist moment of their life. I was robbed of that by this condition and I pray some day that there will be a cure from Congenital Heart Defects and no other parent will have to deal with it. Do you have a heart journey to share? E-mail newsletter@itsmyheart.org for more details. |
| CHD Birthdays |
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Emily Goodridge Harrison Root Ethan Flannigan December 2nd December 2, 2004 December 15, 2005
Tanner Charlie Tester Noah Stassen
December 18, 2000 December 21, 2006 December 9, 2003 - May 26, 2006
Is your child born in January? Please send us your child's birthday and picture so we can all celebrate your child's birth with you!
We also want to celebrate all your angels birthday's too! So, please send us their information so we can include them as well! E-mail to newsletter@itsmyheart.org. |
| IMH Wish List |
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When your checking your Christmas list we hope you find IMH has been good this year. Listed below are ideas of items that would further the causes of IMH.
- Office Space or a House for IMH to call home and members while in the hospital (preferably in the medical center or near the Galleria)
- 2 - 4ft. Collapsable Tables
- Digital Camera to capture all the moments of IMH
- Professional help with putting together a Public Service Announcement
- Airline miles or hotel points (to help us with CHD awareness trips)
- disposable cameras with flash (Comfort Bag item)
- Medium sized stuffed animals (Comfort Bag item)
- Gift cards for office supplies (Office Max, Office Depot, Wal-Mart, etc.)
- White printer paper
- Burnable cd's
- Envelopes
- Toner for a Hewlett Packard LaserJet 4000 TNP.A. System
- Door prizes for walk: A value of $100 and up.
It's My Heart is a non-profit 501 3c. Tax deductible receipts will be provided for eligible donations. Checks and online paypal donations are accepted year round! |
| IMH Happenings |
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New Jersey
A Day at the Bronx Zoo
Sunday, December 14, 11:15am - 3:30pm
It's My Heart would like all CHD families to join us for a day at the Bronx zoo! Each immediate family member (up to 4 tickets) is invited to join us at no charge, any additional guests will be asked to pay the group rate of: Adult - $12 Child - $8.80 2 and Under are free Park opens at 11:30 am, all tickets must be purchased in advance to receive the group rate, therefore you must pre-register for this event. If any additional tickets need to be purchased for your family, money must be received by IMH no later than December 5th. For more information & to RSVP, please contact Kim Shadek at newjersey@itsmyheart.org or 973-291-4676.
Bake Sale
Saturday, December 20, 12pm - 4pm
Wal-Mart Riverdale Crossing; Route 23 North
We are in need of people to donate home baked goods in clear packaging. If you are interested please contact Kim Shadek at (973) 291-4676. All bakes goods must be delivered to Kim's house by Friday, December 19,2008 or delivered directly to Wal-Mart on Sunday at noon. Email: northernnj@itsmyheart.org
Houston
Ornament Decorating at Texas Children's Hospital
Wednesday, December 3, 6:30pm - 8:30pm
Texas Children's Hospital 15th Floor, TCH (Family Room #36)
DescriptionExclusively for families staying on 15th floor. Enjoy cookies, hot cocoa and holiday ornament-making. Volunteers and interested families should email houston@itsmyheart.org for more details.
Target Annual Holiday Helpers Event
Tuesday, December 2, 8am - 10am
Visit any Target Store on Tuesday, 12/2 for relaxed, hassle-free shopping with additional helpers on-hand. All attendees will receive a flyer with a coupon for $5.00 off any purchase of $25.00 or more.
Holiday Social/Potluck Dinner
Thursday, December 11, 7pm - 9pm
Beth Wolff GMAC; 1775 St. James Place; Houston, TX 77056
Please bring a favorite dish to share for dinner. Drinks and cookies will be provided. There will be giveaways, special treats for the kids, IMH merchandise for purchase and informative brochures to pass along to others! Please RSVP no later than Monday, December 8, 2008 by email to houston@itsmyheart.org with the number of adults and children attending the event.
Memorial Lutheran Church Fellowship Hall Christmas Party
Saturday, December 13, 6pm - 9pm
Memorial Lutheran Church Fellowship Hall
IMH Houston Families, Memorial Lutheran Church is hosting a wonderful event to help benefit our Comfort Bag Program as well as assist families staying at Texas Children's Hospital during the holiday season. Dress festively! A free will donation will be collected. This year we have chosen to help the It's My Heart organization. Year round this group helps families whose children have Congenital Heart Defects. Instead of a toy drive, we would like to assist with donations to their Comfort Bag Program, gift cards for families to purchase meals while at the hospital with their children or parking passes for families staying at Texas Children's Hospital with their sick children.
To learn more about upcoming events or how to get involved, visit our chapters at www.itsmyheart.org. |
| Donations |
Donations "In Honor Of", "Memory Of", in recognition of a birthday, anniversary or "Just Because" can be made to It's My Heart. Not only will your donation go towards helping those affected by CHD, but also let someone special know you are thinking of them in a very special way. All donations are tax deductible. Your donation will further the work of spreading awareness of CHDs, fund programs such as the Comfort Bags and Care Packages to the hospitals, etc. |
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It's My Heart Chapters |
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It's My Heart is dedicated to our mission which is to provide support, spread awareness, educate and advocate for those affected by Congenital Heart Defects by creating alliances with fellow families, hospitals, support groups, and the community. Creating chapters of IMH throughout the country is imperative to our ability in achieving our mission.
The objective of chapter development advances our opportunity to increase awareness, support and thereby advocate for those affected by CHD.
If you are interested in organizing a chapter or becoming a Regional Coordinator in your area, please contact the It's My Heart National Office at (281) 578.7343 or (888) HEART.07 or e-mail chapters@itsmyheart.org.
Check out the IMH Chapter nearest you:
Fresno, California Central Louisiana Boston, Massachusetts Northern New Jersey Southern New Jersey Hudson Valley, New York Cleveland, Ohio Oklahoma City, Oklahoma Portland, Oregon Austin, Texas Fort Worth, Texas Houston, Texas San Antonio, Texas Central Virginia
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