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| Greetings! |
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Attention all heart families! It's My Heart has created a tool to enable parents, teachers, caregivers and healthcare professionals access to pertinent information about your child's defect/disease. This booklet will fit in a pocket, purse, diaper bag, glove compartment or any other convenient place. Request the "My Heart Bio" online at www.itsmyheart.org. We are so excited because there is nothing currently available for pediatric heart disease. This booklet is good for both Acquired and Congenital Heart Defects. It is always a good idea to ensure those who care for our children are competent and understand the needs of our children's medical conditions. Interestingly, no one person has the exact same diagnosis. Each diagnosis can manifest in different ways and the need of care can fluctuate as time goes by. This booklet will also help you to record information at doctor's appointments!
I am also very delighted to help recognize our nurses who work so hard. Please take a minute and tell us about a nurse that is dear to your heart. You know the one that went above and beyond to make sure your child had the best care. So many parents develop close relationships with nurses. You may wonder how they give such great care. Being a parent, we are instantly obligated to be our child's best caregiver and it is honoring to see a complete stranger open their hearts to our children. Yes, it is their job, but it is not a guarantee or promise that they will love our children. The contest will run from May 1st - 20th. The best story will be chosen by our panel of judges. The winning story will be published in the June Edition of the newsletter. The winning nurse will also receive the Artey Award. Does your nurse have HEART? Hardworking, Empathize, Advocate, Resourceful and Teacher. These are the qualifications we are looking for and you can submit them at www.itsmyheart.org.
From the Heart,
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| Monthly Meetings |
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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 emails 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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Quote of the Month |
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"If you have an hour, will you not improve that hour, instead of idling it away?" Lord Chesterfield |
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| Dr. Heart to Heart |
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We had so many people help us during our time of crisis. Now that we are adjusting to our new normal I want to help others. What kinds of things can I do?
A fellow heart mom, Gayla Giffen, has a list of ideas in the back of her son's book "Zachary's Heart". She sums it up very well, so I'll let her give you some ideas:
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Food (or coupons for local restaurants, close to their house or the hospital)
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Magazines or books
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Phone calls from you, maybe even phone cards to make calls.
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Visit - people who you think will be there, often aren't. Again, I wanted to visit. You will have to judge the individual family if they want people around.
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Music
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Offer to sit with their child or baby so that they can run errands or be with their other children.
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Offer to take photos. Some parents are initially uncomfortable with this, but everyone we have ministered to has commented how glad they were that we encouraged them to do this. Or, bring them a disposable camera. That way, they'll have it if they feel the need to use it.
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Often, families need help with insurance, medical bills and helpful state programs. I don't have that information, but it helps to refer them to the hospital for those issues. Sometimes they just need to talk about it, to get the frustration out. If you have knowledge in this area, you would truly be a God-send to them.
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Bringing inexpensive gifts for the child (or children if there are siblings.) It doesn't have to be much, but it's a nice gesture. Also, something for the Mom or Dad is nice, if you can - a book, a CD, flowers, note cards.
The following are beyond the call of duty, and this is more for someone who is a friend, but these are things that people offered to us, or to my Dad when he's been in the hospital:
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House cleaning. Our Sunday School class offered to do this, but it would have felt weird letting people do that (I'm a pack rat.) However, if they had offered to let a cleaning service come by, I might have agreed to that!
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Mow the yard
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Check messages
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Bank deposits
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Help with other children. Take them to the park, out to eat, invite them over to play with your children or grandkids, make cookies with them, garden with them, or go see a movie. Anything to help them deal with the stress and take their mind off their sibling, and let them know that they are special, too.
What do you say to a family who has a chronic child? Listening is best. Almost anything that you say that is loving and supporting is helpful. One thing that almost all parents have told me in one form or another not to say is this: Everything will be okay. You don't know what the future holds. It's just, in general, not a good thing to say.
What can you say? Let them know that their child is special. Almost all parents with a chronic child feel that their child is special, or a miracle. I have to tell you, I think all of them are special, and all of them have some sort of miraculous in their lives. Most parents already feel that, but it helps to reiterate it to them. With few exceptions, don't ever be afraid to cry with someone. It is heart breaking to see a child on life support, or connected to wires and feeding tubes and so forth. You don't need to be strong for the person. In fact, your tears will relay your love and Christ's love better than almost any words you can say."
Direct them to organizations like "It's My Heart". Just be a friend! Remember how alone and confused it felt at the beginning? Just being there will be helpful to another family.
Have other ideas? Share them on the yahoo message board with other heart families!
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| Heart Story - Jeni Busta |
Story told by Jeni Busta.
Twenty-three years ago on June 25,1985, I was born with a congenital heart disease called Hypo-plastic Left Heart Syndrome, which means I have an underdeveloped left side of the heart. In other words, I was born with only half a heart. Having my heart disease put me through a lot of emotional pain with school where I faced cruel children who made fun of me. I also had to endure being hospitalized a lot of my life. However, now that I look back at what I've been through, I feel blessed. All of the horrible things I faced have helped to mold me into the person I am today.
When I was born my parents said I looked "beautiful and pink," but a few hours later I was turning blue and my lips were purple. At that time, my heart began to fail. That is when the doctors made the decision to rush me into the first of many surgeries within 24 hours of my birth. Originally, the doctors' plan was to wait a few days until I became stronger, but I started failing fast. It was a miracle I had survived. The doctors told my family that there hadn't been any survivors of my heart disease that they knew of. Also, according to medical history and statistics, there was virtually no chance for my survival. Instead of listening to all the negatives, my family pushed aside what the doctors were saying and had faith in God that I was going to live. I was one of the first few survivors in the world to overcome all the odds of the heart disease, and the first one ever at UCLAMedicalCenter. I feel the decision to not wait on my first open-heart surgery is the reason I am here today to share my story.
Growing up for me was extremely hard. Throughout my life, I had to face many difficult heart procedures and surgeries. Because of being hospitalized, going to doctors' appointments, and undergoing surgeries, I missed a lot of school, which really hurt my education. There were a lot of cruel children at school that would always make fun of me because I was so small and delicate, and because I could never do any of the strenuous exercising or running that most normal kids could do.
I will never forget the harsh, mean things the kids would do to me just to see me hurt. They all thought they were better than I was just because they were healthy and normal. When I was in pre-school, I was kicked in the stomach by a little boy; he thought it would be "cool" to see if I would break open because of my scar being there. Once I entered grade school, the taunting and teasing got worse; it seemed to me like it never ended. "Why do you even try to survive, Jeni, you'll die anyway," or "You won't make it anywhere in life, because you will never survive," they would say in loud voices. During P.E., the kids use to push me down to the ground while I was trying so hard to run around the field. I remember, very frequently, I would come home from school crying in my mother's arms. Even though they hated me so, I never wanted revenge or to hurt them back. I was always taught to love your enemies and that's what I wanted to do. Being reminded that God was always there for me no matter what was the only true thing that kept me strong. I always knew he never left my side. Despite the ridicule from some of my peers, my family and faith in God helped me to overcome the emotional and physical pain I had endured. Even though I was young, I experienced a lot, and that made me realize that God put me on this earth for a reason.
Even though I faced those horrible things in my school career, I am glad I went through the ordeal. It helped me grow into a better person by wanting to reach out to those who needed a friend. I never wish the pain I dealt with throughout my childhood on anyone; that is why I try so hard to be a friend to those who are treated harshly by others. I know what it is like to be in their shoes.
One of the ways I coped with the pain was getting involved with Heart Camp. At the age of nine, my cardiologist mentioned to my mom and me that a camp was being planned for children with heart disease. The first time I went to Heart Camp, it was also my first time being away from home. I was a little scared, but mostly excited. Each summer we spend 5 days on Catalina Island. I can honestly say that going to Heart Camp has been one of the best things to ever happen to me. It was a huge turning point in my life. I got to know many children with all different types of heart disease. Some of the people I met there are now my best friends. I find a certain bond in these people from Heart Camp that I do not have with anyone else, simply because we understand one another's rare life challenges. We are all so much alike in so many ways, because we face a lot of the same obstacles at a young age. We all have scars on our chests, medications to take, doctor appointments to attend, and heart surgeries to go through. The overall amazing experience of Heart Camp has bettered me as a person. I actually thank God for granting me this life-changing experience that will always be a part of me.
The only downfall of the camp is that some of the friends I would become so close to would pass away. One of my best friends, Daviana, unexpectedly passed away six years ago. Losing her was a devastating experience that taught me to be stronger. It reminded me once again that every moment God grants me to remain on this earth is precious. I realized I had not shown the ones I love how much they really mean to me until I lost Daviana. We never know when our lives will be taken away. I now cherish each and every loved one and I know that I need to continually show how much I love them.
I'm not sure what kind of person I would have become if God was not a part of my life. If He hadn't blessed me with all the love and support of all the people I am close to, I probably would not be here today. Each and every one of these cherished individuals has played a role that contributes to the formation of who I am; they all helped me have a positive outlook on my heart disease. However, the Being who by far made all the difference is my Lord and Savior. I always thought of my heart disease as a blessing from God despite what I went through, instead of feeling sorry for myself and being depressed. I know that I am blessed by God to have such a wonderful understanding of the beauty of life. This in turn, has given me the desire to live every single day as if it was my last. |
| CHD Birthdays |
Please send us your child's birthday and picture so we can all celebrate your child's birth!
We also want to celebrate all our angels birthday's too! So, please send us their information so we can include them as well! E-mail to newsletter@itsmyheart.org.
May 4, 2004 May 7, 2004 May 14, 1991
Carver Hix D'aundriya Jetters
May 15, 2007 May 16, 2007-Nov 2, 2007
Robert Van Tine III Keeton Williams
May 18, 2005 May 29, 2006 |
| Donations |
In Honor Of Kyle & Connor Joyce
Contributor: Michelle Paradise
Message: Happy 9th Birthday Kyle & Connor Joyce
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. Contact sharon.mosby@itsmyheart.org to make your donation. |
| It's My Heart Chapters |
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. | |
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