Being a Blessing by Trent Hamilton

As we speed into the holiday season, many of us take a few moments to think about those who are less fortunate or are in need.  During this time, some people volunteer their time at a shelter or soup kitchen, some people adopt an “angel” off of a tree, and others donate clothing to the Salvation Army. Whether your contributions are out of genuine caring or an effort to get one last deduction for your yearly taxes, any help that you provide to others will be appreciated.

In this special time of giving, there are many different groups that are worthy of your charity. If your family or friends have been touched by congenital heart disease (CHD), I would encourage you to consider doing a little something to make life better or easier for these special families.

There are many things that can be done to help and/or support families who are battling CHD, below I would like to offer a few suggestions.

  1. One of the easiest (and most cost effective) ways to help is to be a donor. You can sign up to be an organ donor online by clicking here. You can also donate blood. Almost all CHD patients will need blood products at some point during their treatment; some will need it multiple times. While it is not easy to donate directly to a patient, many blood centers have a credit program that would allow you to give blood and the patient would get a credit for the blood instead of being charged for it. Even if your local blood center doesn’t have a blood credit program, the gift of blood is very useful. One pint of donated blood can save up to 3 lives! The best thing about these options is that they are completely free!

  1. Another simple, and relatively cheap, option is to donate new stuffed animals or books to your local children’s hospital. Whether they go to the cardiac intensive care unit (CICU) or to another part of the hospital, these items will be cherished by a child in the hospital. It is important to make sure that the items are new, as not to spread germs, but you really can’t go wrong with this one. Anything that might make a child feel a little more comfortable or secure will go a long way toward their recovery.

  1. Take a meal or some food gift cards to a family in the CICU. If you have spent any amount of time in the hospital, you know that cafeteria food gets old very quickly. A homemade meal or even fast food can go a long way to restoring the soul of a family experiencing a tough time.

  1. Finally, if you have the financial means, I would encourage you to consider making a monetary contribution to an organization that assists CHD families or supports research for CHDs. I would be remiss if I didn’t ask you to consider supporting Whole Hearts Foundation. In case you don’t know, Whole Hearts provides financial assistance to families who are battling against CHD. Every dollar that you donate will meet a need of a CHD family in your local community. Whether the need is money for food, assistance in paying a bill, or having a place to rest while their child is in the hospital, Whole Hearts aspires to ease the burdens of these families so that they can focus on the health and well-being of their child. You can support Whole Hearts by clicking here.

The hope of a new year is just around the corner and, as we reflect on 2012, many of us think about all of the ways that God has blessed us this past year. There are many ways that you can be a blessing to others as the year comes to an end. I hope that you will consider making a difference during this holiday season.
Merry Christmas and Happy Holidays!

Trent Hamilton
Director of Local Support
Whole Hearts Foundation

Hope Made of Glass

My family participates in the CHD support group at Medical City Children’s Hospital, called Amazing Little Hearts. Our group meets each month to share stories, hear doctors and others speak about CHD topics, fellowship, and support each other. Occasionally, we have an outside group come and speak to us about programs or special opportunities for our families.

Not too long after Tucker went home from the hospital for the first time, we attended a meeting that had one of these special guests. Two sweet ladies came to speak to us about a new program that was beginning at the hospital. These ladies shared the story and inspiration behind the Beads of Courage program.

If you aren’t familiar with Beads of Courage, here is an excerpt from their website:”The Program is a resilience-based intervention designed to support and strengthen children and families coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.” Basically, kids earn beads for each test, surgery, procedure, needle stick, treatment, etc. and the beads are strung on a necklace for the child to wear as a testament to their courage and resilience.

Beads of Courage supports kids with cancer and blood disorders, cardiac conditions, burn injuries, Neonatal ICU stays, and other chronic illnesses. Each of these conditions has its own specific program guide that fits the treatment cycle of the condition. Beads of Courage is now in over 140 different children’s hospitals in the United States, Canada, New Zealand, Japan, and the United Kingdom. Over 30,000 children are benefiting from this amazing program, with more being added each day.

Since Tucker is only 3 years old, he doesn’t really understand his beads yet, but he definitely loves them and likes to look at them. The older kids in our support group do understand the beads and know that they represent needle sticks, procedures, and the pain that is associated with CHD. Despite the fact that the beads represent “bad” things, the kids love them and wear them like a badge of honor. They know that they earned those beads with their bravery.

Our kids go through so much in their fight with CHD, it is important to reward them when the days are tough. Beads of Courage is a perfect way to provide hope and comfort, even when it seems like the fight is just beginning. The beads also provide a tangible way for each child or family to their story.

Behind the program is a large group of donors and artisans who make the beads possible. Donors and organizations provide the funds to operate the program at local hospitals. There are scores of special beads that are made by skilled glass artisans. These special beads represent major milestones in a child’s treatment and are especially treasured items. If your hospital doesn’t already have a Beads of Courage program, you can contact them through their website,, to find out how to get one started.

Just like Beads of Courage, Whole Hearts Foundation is trying to bring hope to the courageous kids and families battling against congenital heart defects. Our mission is to provide education, support, connections, and innovation to our families. Also, like Beads of Courage, Whole Hearts relies on the generosity of others to be able to reach these families. You can make a tax-deductible donation to Whole Hearts by going to

Each of Tucker’s beads tells a story. They tell a story of pain, surgery, and a broken heart, but they also tell a story of triumph, courage, hope! What is your child’s story? We would love to share it with the Whole Hearts family!

Trent Hamilton

Director of Local Support

Whole Hearts Foundation

Finding our purpose

By Andrea Peters

Over the past year I have come to realize that I’m questioning lots of things around Christianity and God. This is not because I doubt that God exists but because I feel it’s hard to see the good when you feel consumed by the bad. I also have come to realize that the finishing of Caydan’s third surgery and the reality that it’s a waiting game has made these feeling more apparent. I’m no longer able to feel “in control” because now it’s all in God’s hand and for His timing. Not that it hasn’t been all along but I have felt somewhat part of the healing process.

When I met with Caydan’s kindergarten teacher the first week of school she shared that she had just finished a book called “To Heaven and Back”. She (Ms Lisa) herself is a survivor of breast cancer and has an innate sense of God and God’s timing. Now keep in mind that I had just met Ms. Lisa and she knew really nothing about our family, Caydan and our journey. Little did she know that in hindsight I felt God had sent her to me to encourage me to read this book, plus of course teach, nurture and love Caydan.

The book is about a doctor who drowns, experiences heaven and is sent back to earth to finish what God had planned for her – including the death of one of her children. I have struggled recently with what Heaven is like, what passing into heaven is like and why God chose our family. I also have been struggling with the feelings of guilt and shame for feeling this way.

Caydan is doing great – how can I possibly feel like this? God has put so many things into place – how can I not feel like He is with us each and every day and how dare I question His will?

In reading “To Heaven and Back” it became very apparent to me that God’s will was for Caydan to be given as a gift to our family and has helped me better realize my role in our family. I have always been the strong one, keeping us together, planning dr apts, surgeries, ordering medication – I want to fix and make it better – don’t get me wrong I am married to the most amazing husband, father and life partner – but I’m also the one who wants to control.

Some may laugh and say how do you feel control with a child like Caydan – but in some weird way I have felt that but now with control ripped from me I have to let go. I have to let go and focus on my healing and my ability to not feel guilty and ashamed and realize God has given us a gift. But it still leaves questions of how am I to use this gift for His will.

In this book Dr. Neal suggests that you keep a journal for a year and write down the good things that happen and the bad things that happen and what people were part of those circumstances. She then suggests you look over the year and see the “miracles” not coincidences that God has placed in your life. As a quick exercise I went back over the past 6 years – and quickly had tears in my eyes and I saw the hand of God. That is easy to say and can be somewhat stereotypical but really when you look at circumstance after circumstance – that is truly a miracle and the power of God.

As I continue this journey I know I’m not perfect but it’s reassuring to know that God still loves me – no matter what and I have to continue to work on trusting in Him. I have to learn to listen and let Him guide me. I have a very strong faith however the power of the unknown for me – especially with my children – is overwhelming.

If you have time please read this book because it’s powerful – for any parent and especially for parents of a sick child or parents who have lost a child. On her fridge she has a creed – one that I will be putting on my fridge – because what an amazing daily reminder:

I believe God’s promises are true

I believe heaven is for real

I believe nothing can separate me from God’s love

I believe God has work for me to do

I believe God will see me through and carry me when I cannot walk

I still have work to do; work on myself, work on my marriage, work on my children – and God has a purpose for me. This quote from the book has stuck with me – mostly because I think it sums up much of what I have been feeling:

“I also stopped looking to God for help. Believing that I could do it all on my own. In the process, I had let doubts; fear and guilt silently creep in and take over my thoughts”

There is freedom in letting go and realizing God has a purpose for our lives and we must use the talents He has given us for good. I look forward to the continued journey –adventure might be a better work – and revel in the freedom of letting go.

CHD kids and School Special Services

Several people in our CHD support group have recently had questions about getting special services for the kids who are starting school this year. Specifically, we have been discussing the differences between Special Education services through the Individuals with Disabilities Education Act (IDEA) and Section 504 of the Rehabilitation Act of 1973 (Section 504), and which would be appropriate for their CHD child. As a school principal, I deal with both Section 504 and IDEA students on a daily basis. I hope that the following blog will help you make the right decisions to provide assistance and protection to your CHD child as they start the new school year.

Basically, the two laws are similar in that they both provide educational benefits to kids with disabilities, but they differ in their eligibility requirements and the types of benefits that are provided. The requirements for eligibility under IDEA are stricter than those under Section 504, but IDEA provides more benefits than does Section 504. Essentially, all students under IDEA are also protected under Section 504, but not all students under Section 504 are protected by IDEA. It is easier to place a student under Section 504 because it has less procedural criteria, but these students are generally provided less assistance and monitoring by the school. IDEA status is more difficult to get because there are more specific criteria and it has much stricter regulation, but it does provide more types and degrees of assistance and special services to the student.

Section 504 protects people for their lifespan in many areas, including school, employment, and transportation, while IDEA only addresses the special education of students from ages 3 to 21.

Students are eligible for IDEA if they have a specific impairment or condition that adversely affects their educational performance. These impairments or conditions can include, but are not limited to: autism, learning disabilities, speech/hearing impairments, emotional disturbance, or other health impairments, but the condition MUST adversely affect their education. Students are eligible for Section 504 if they have a condition that substantially limits a major life activity, even if the condition does not affect their education. Major life activities include: walking, seeing, speaking, breathing, learning, and working. But Section 504 conditions do NOT have to have an educational affect.

IDEA requires that students be placed in the most appropriate learning environment for them individually. This can include regular or special education classes. It also requires that each student has an individualized education program (IEP), which provides specific modifications and accommodations to help the student succeed academically. Section 504 generally places students in a setting that is comparable to that of students who are not disabled. It also provides some accommodations, but these are usually used in the regular educational setting.

So, which type of services is right for your child? This depends on the level that your child’s CHD has affected them and their development. If your child’s CHD caused them to have any type of developmental or learning disability, then IDEA is probably the right program. If your child’s CHD slows them down physically, but has not affected their learning or development, then Section 504 is probably best. There are obviously exceptions to these, so be sure to consult your child’s school if you aren’t sure which is right for you.

You might be wondering why you need any type of service at all if your child doesn’t have any learning or developmental issues. As a principal and a CHD parent, I highly recommend that you pursue some sort of protection for your child at school. While your child may not need accommodations or special services in order to succeed academically, they may need some of the other protections that are provided under Section 504.

One of these protections involves attendance. Many states require that students attend 90% of the available school days and, even if an absence is for approved medical reasons, a student can be retained for excessive absences. If a student has protection under Section 504, special accommodations can be made in the event of an extended illness or hospitalization. Also, your child may not experience severe educational deficits early in their school years, but if they do later in life, having a 504 plan can make it easier to get accommodations or even move to IDEA protection. Section 504 also makes it easier to get certain exemptions from activities, like running, lifting weights, etc.

In addition to all of this, the Section 504 plan follows your child through school as a record and every new teacher is required to review it during the school year. This means that each new teacher will be notified of your child’s condition and know what your child needs.

I hope that this information helps you in making the right educational decisions for your CHD child. If you still have questions, feel free to email me at I also encourage you to speak to your school’s counselor or special education diagnostician. Again, your CHD child does not have to have either one of these services, but I assure you that my son (HLHS) will, at least, have a Section 504 plan.

Trent Hamilton
Director of Local Support (middle school principal)
Whole Hearts Foundation

Back to school with CHD kids

One of our topics this week was getting CHD kids ready or back to school.  With such wonderful responses and messages we though it would make a great stand alone entry for our blog for everyone’s benefit.  Here are some of the fantastic advise we received from some of our Whole Hearts family.

Whole Hearts mom Jennifer Howard gave us this great insight:

“Because it is time for back to school, many parents are asking questions as their kids go off to school and I keep replying with my praise of MedicAlert, I thought I would give a quick rundown of the reasons I like it.

All of my son’s info is in one place. His pertinent information is printed on the bracelet he wears, including his ID# that Emergency Medical Response (in case of an emergency) can use to look up ALL of his medical info I have entered into MedicAlert. It is easy to update his information online and if I ever run into trouble entering something, their customer service is GREAT! An example of this is his aortic valve replacement. It is actually a pulmonary valve (he was only the 5th child to receive this type of valve in the aortic position), so entering the part # pulls up “pulmonary valve” on the site. I contacted customer service and they held a special medical review and made the change so the information on his record was correct.

Below are the tabs that are on Landon’s MedicAlert Health Record. You can update it online and can PRINT the entire record to give to teachers or other care providers.

Personal Information
Emergency Contacts
Medical Providers
Any necessary documents
Devices (including part #s and serial #s)
General Info (religion, language, insurance info and blood type)”


Another one of our Whole Heart moms Lindsey Morrison sent us a great message we wanted to share on the topic of going back to school.  Lindsey says:

” Here is a letter that I have found very useful when it has come to my two CHD children. The teachers and staff have expressed how thankful they are to have gotten the letter and how much it helps. Would you please share it with the other WH familes. They can save it to their computers and insert their child’s name and other information.




Dear teachers name, and concerned staff,

I wanted to first say hello. (Child Name) is excited to be in (Grade in school) and hopefully will be a perfect addition to your class. I wanted to let you know a little about (Childs name). I will send this to the school nurse, Gym teacher, Principal and any other relevant staff as well, so I apologize if it was passed on but as you will see it is rather important that everyone dealing with (Childs name) is aware of his/her special circumstances.

(Child Name) was born with a Congenital Heart Defect (CHD) called a (your Childs CHD and brief medical history, any sergeries, hospitalizations or other info )

We have been enjoying the time since the last surgery and do not expect any procedures in the near future, but with a condition this serious the future is never crystal clear. He/She will see her cardiologist in (next appt date) and if anything is turned up, we will of course let you know if it will affect her school time.

Just to let you know some tidbits about Him/her and some warning signs and things to watch for. (Childs Name) oxygen levels are sometimes slightly lower than that of other kids. The weather can affect heat/cold regulation so there needs to be the ability to rest when she needs to and hydrate as much as possible during physical activity, this is very important. I will make sure she is appropriately dressed for the weather.

Physically he/she is to be treated as normal as possible. He/She is not allowed hard contact sports or any kicking, hitting, direct ball contact etc in the chest. Running is fine and most physical activity is ok as long as she can rest if she needs it or get a drink of water. Things to watch for: Nostrils flaring/rapid irregular breathing, bloodshot eyes or rolling of the eyes, extreme sweating, redness of the face and body that doesn’t go away with shade/rest, blueness of the lips or hands or vomiting. Any signs of an adult heart attack, the dizziness, fainting, pain in the arms, etc. also would of course be signs of emergency.

As I mentioned, I will have spoken with all the staff that deal with (Childs Name), and obviously if she is in distress of any kind, 911 should be called before me, but if he’s/she’s just “normal” sick, I can be called.

Please forgive me if this comes across as a lot of information. We wanted to provide it so everyone is on the same page in regards to (childs name) care. There really should be minimal impact the heart defect has on day to day life at school, but we felt very strongly that everyone who is in a caretaking role be made aware of this issue.

We are all looking forward to a fun school year. Thank you so much for taking the time to read this, and if there are any questions you have, I would be more than happy to answer them for you. Thank you again.


(parent signature)

Daycare: Tips for CHD Parents

One of the toughest decisions for any parent is whether or not to send their kids to daycare. This decision can be even more difficult, and more critical, for parents of children with CHDs. The intention of this article is not to argue the merits or faults of daycare – it is to help parents who make the tough decision to send their heart (or heart healthy) kids to daycare.

We made the decision to send our son Tucker, who has HLHS, to daycare before we knew abouthis defect. In the weeks after his diagnosis, we struggled with fear and hesitation but decided to stick with our decision. Although it has been difficult at times, we have learned to trust our instincts and the professionals we chose to care for our child. If you are considering daycare as an option, this list of tips will help to make your transition easier:

1. First and foremost, make sure any daycare you are considering is capable and comfortable with having your CHD child attend. You may want to look for day care centers that employ a full or part-time nurse or who has had heart kids before. Most day care centers require emergency training for all childcare workers, but double-check that anyone who will be directly responsible for your child is CPR-certified.

2. Visit any daycares you are interested in, but go without your child the first time so that you won’t have any distractions. Ask questions and address any concerns you may have with the daycare or its services.

3. Once you have narrowed your selections, you should visit again to let them meet your child and to go over the details of his/her defect. Explaining the defect, and most importantly, letting them see that your child is normal, should ease any fears before they arise.

4. On the first day, arrive 15-20 minutes early to make sure that there are no questions. Provide a few written instructions for your child, including any problem signs to watch for and any special instructions (i.e. medications, physical or feeding problems, dietary restrictions, etc.). Frequently update any special instructions to ensure that they stay abreast of any changes.

5. Provide contact information for yourself, an alternate emergency contact, your child’s pediatrician, and your child’s cardiologist.

6. Being in daycare may make your child more susceptible to colds, flu, stomach bugs, etc., but remember that ALL kids get sick and most childhood sicknesses are no more dangerous to heart kids than they are to normal kids. Communicate frequently with the daycare to see if there are any illnesses going around. You may need to keep your child at home from time to time, especially during RSV season, but remember, all kids get sick, even ones who don’t go to daycare. Pay close attention to your child to prevent any serious problems.

7. Lastly, trust your instincts and do what’s best for you and your family. You should be able to leave your child without any concern for his/her care and safety. If at any point you don’t feel comfortable with your child’s daycare, start looking for a new one. You know your child better than anyone, so advocate for him/her.

While this article was targeted toward families considering daycare, many of these tips apply when getting your child ready to start school. You may not be choosing between different schools, but preparing the school for your child and making them aware of the defect, symptoms, emergency info, etc. are universal factors to consider and keep in mind.

Trent Hamilton
Director of Local Support
Whole Hearts Foundation

If you have any questions please let me know:

What is a heart mom?

What is a heart mom?

By Trent Hamilton

My son, Tucker’s, life began very normally, but that all changed very quickly as he was diagnosed with Hypoplastic Left Heart Syndrome at about 36 hours after birth. But this post isn’t as much about Tucker as it is my wife, Dena. Tucker was our first child and we had so many plans for our “normal” parenthood. Dena should have stayed in the hospital for about 48 hours, and then we should have taken Tucker home, continued living our lives with our dogs, in our own home, never to return to a hospital except for a broken arm or some other common accident related to having a boy.

None of it happened that way, though! Dena went from her post-pregnancy hospital bed to chasing a stretcher carrying our dying son to an ambulance to be transported to a different hospital. She didn’t go home with Tucker until he was 1 month and 1 day old and we have returned with him to the hospital several times in his short 2 years of life.   Dena has seen her son only minutes from death, she has entrusted his life to God and doctors twice for open-heart surgery, and she has seen his beating heart through a gaping hole in his chest, while spending countless hours at Tucker’s bedside, alone, in a hospital.

But Dena is not the only one! There are thousands of other mothers who have gone through this same journey and they are ALL heroes! Sure, dads have done these things too, but it is different for us. We dads didn’t carry the baby inside of us, didn’t deliver them, and we don’t usually have the fear that it was something that we ate, drank, did, didn’t do, etc. that caused this horrible heart defect. Dads also don’t, (and will never), get what it is to be a mom. For “heart moms” it may as well be a piece of their own heart that is broken and will never be whole again.

For Mother’s Day, Whole Hearts wants to take a moment and honor all of the moms out there, not just “heart moms”, but all of them. For every “heart mom” there are grandmothers, best friends, sisters, coworkers, and cousins who are touched by Congenital Heart Disease.

Moms are the hands, feet, brains, and backbone of the family, (I’m not really sure what that leaves for the dad, but that is another story).  Moms cook, clean, nurse, work, taxi, discipline, and above all, LOVE. Moms motivate us to be our best and dry our tears when we don’t reach our goals. Moms not only feed our stomachs, they feed our souls; they don’t just provide shelter, they give kids a spiritual foundation on which to build a good life.

Proverbs 31 speaks about the Godly wife and mother. It says that she is more precious than jewels; she is trustworthy; she gets up to take care of the “house”, even at night; she takes care of those in need; she is clothed in strength and dignity; she can laugh at what is to come; she speaks wisdom and teaches kindness; she watches over the affairs of the household and is never lazy; the children rise up and call her blessed and her husband sings her praises (Proverbs 31: 10-28, English Standard Version, paraphrased).

Moms who have, and currently are, fighting the battle against CHD are described perfectly by the above and they deserve to be praised. In addition, the moms who raised us, the moms who support us through tough times and are our friends, deserve the same praise.

So, with my “Whole Heart”, on this Mother’s Day, THANK YOU! Thank you to my wife and Tucker’s mom, Dena; thank you to my mom, Joyce, and thank you to all of the moms who have influenced me and all of the other kids in the world!

Happy Mother’s Day from the Whole Hearts family!

Brothers and Sisters

We read blogs, stories about CHD kids and their parents almost every day.  We’ve come to understand through experience or education, the challenges of both, but seldom covered is how siblings of CHD kids are affected.

Families with multiple children face a very unique challenge, for the parents especially, it becomes a huge time management effort in balancing the needs of your CHD child with the needs rest of the kids.  Striving for and achieving this balance seems quite challenging but not impossible. So is there a mathematical equation for making all of this work?  for reaching that pinnacle?… probably not, as each family unit is different, but there is one common factor that seems to significantly contribute to success – COMMUNICATION.

Families in which siblings of a child with CHD are integrated into the education and information about the condition tend to receive greater “buy-in” from their kids. That is to say, that by including them and talking about the specific form of CHD and all the process, care and procedures that go into making it better, siblings feel more empowered and included.

But what happens when parents have to leave siblings behind while their brother or sister goes into the hospital? ( We’d actually love to hear your input on that.)  We know that ensuring they are in the care of family members; grandparents, aunts or uncles, is always best.  And this support system is essential when communicating complications or procedures, but what’s the best language?  What words to use?

While we searched for substantial answers to this dilemma we found very few resources but we did come across one site that we want to share with you They have put together this really wonderful FACT sheet for parents so we wanted to highlight some of the suggestions from the author Maria Escuerdo:

Parents need information

Parents frequently feel that the stress and anxiety they endure at this time stops them from finding sufficient emotional peace and quiet to provide the adequate explanations and information that their other children need. However, the siblings do need to be informed.

  • Parents need to make an effort to explain, because providing clear, precise information, adapted to the right level of understanding for the child is crucial in the adaptation of the siblings to the new situation.
  • The illness has to be demystified, and the child helped to understand that his or her sibling’s suffering is not anyone’s fault, that it is not contagious, but that it is serious and requires cooperation from everyone. 

Communication and contact are crucial

Because of the long period of time that they spend together and the ambivalent feelings that are normal during childhood, the ill child’s siblings sometimes think that the negative feelings they have for their brother or sister (when he or she receives more attention from the parents) are the reason for the situation. They might also think that they are the cause of the problem because they argued with their sibling. Therefore, it is essential that parents talk to the siblings about their feelings.

  • The siblings should be encouraged to express their feelings. They should be made to see that the feelings they have (pain, jealousy, worry, fear, relief, etc) are quite normal.
  • The feelings that are justified (eg. pain, sadness, worry, etc) have to be separated from those that come from fantasy or a mistaken interpretation of reality (eg. guilt, abandonment, fear of contagion, envy, etc), which are feelings that need to be eliminated.

Involving siblings helps them to accept

  • Siblings should be involved in the preparations made for the child to go to hospital.
  • If the ill child is offered the chance to go around the hospital or read material about the illness, the other children should be included in these activities, providing that they are a suitable age. 
Full text of Maria’s Blog post can be found by clicking: FACT SHEET FOR PARENTS
Siblings, such a wonderful and integral part of a CHD Child, and another amazing gift for every family.
We’d love your feedback on this topic as it will only help other families.  You can post your comments below.

An Easter Message

By Andrea Peters

I know as a mother of three, this time of year is so fun! The flowers are in bloom and my kids are starting to look forward to summer. Easter brings so many fun things that can be seen through the eyes of a child: Easter egg hunts, sugar rush, and dreams of chocolate bunnies.  In our family, Easter is also about understanding the meaning of the resurrection.

We were raised to believe, and still believe that Christ died on the cross to save us from our sins. In this imperfect world, it is good knowing that we have this incredible gift of a Father allowing his son to die on behalf of all humanity. It’s also the story of a mother seeing her son hanging on a cross. This is the true meaning of Easter. As a mother of a child of CHD—I have a glimpse of the agony Mary must have experienced—the pain, the fear, the unknown, and the inability to save him. Just as in the resurrection, God has a higher plan for our children as well. We take great comfort in believing and knowing this. I encourage you, this Easter weekend to remember our children are gifts, wholly made in the image of God—imperfections and all.

God is good–but that doesn’t mean life doesn’t go without challenges. Challenges in raising a CHD child.  Challenges financially in paying for these children.  Challenges in questioning “why me”.  But He will provide more than we ever ask and think and I trust you have peace knowing He is Risen… He is Risen Indeed.

Happy Easter from the Whole Hearts family.


If you ever asked WHY ME….

Most of us can probably admit to owning a pair of words, that as we age, have taken on a bigger meaning.  When we were asked to do our chores as little kids, or asked to clean up a mess we didn’t make, perhaps we had to go to that aunt’s house we didn’t really care for…… “why me?”  Yes why me was for many a staple of the every day vernacular….Interesting thing about WHY ME, we always associate it it with some type of punishment because after all, it’s something that should really be passed on to someone else.

As we get older, we endure our first break up,  first loss, get fired from a dream job or any other unfortunate situation, many of us at one point or another ask WHY ME?   With age and conscience we also tend to direct that question away from our parents and at a higher power.  As people we are vulnerable, we are emotional and we grieve all types of losses… and for many of us we question why we deserve that.

Today I challenge the WHY ME….  WHY?  Well because there is no greater challenge to the WHY ME than a parent caring for a child with CHD.  I bet if you think about it, if you were to ask WHY ME? the answer you’d get back is “No one could care for this child and love this child like you”.  We talk about how amazing CHD kids are, well because they are.  But CHD parents are quite remarkable.  They realize quickly “why me” is no longer even a logical question.  They realize they have been given the opportunity to fulfill and carry out a job that not every parent can do.  To love, nurture and care for a child that not just anyone could.  They’ve been blessed with greater compassion, patience, strength… all the tools needed, and unique to CHD parents.

I think it would be safe to say that just like there are 1 in 100 little CHD Angels, God provided 1 in 100 Parents to care for them.