In the last few weeks, I have entertained leaving the CHD community for good.  I never thought I would feel that way and truthfully, that’s why I’m writing this blog–because I hope that somehow this can make the difference we all need.

I read once that Christian’s are the only ones who shoot their wounded but I’ve discovered that statement simply is not true because I’ve watched the ready-aim-fire taking place in the most unimaginible place ever.  HERE.  In the CHD community.  I’ve watched battles for territory, proprietary rights & people who flat out refuse to unite with one another because of any myriad of differences.  I’ve watched as people refused to support each other because their kid is an angel while someone elses’ kid is a warrior.  I’ve watched adult survivors who fight with parents and parents who fight with each other and…I’ve shaken my head in shock at times while at other times been heartbroken.

I don’t understand this.  I really don’t.  I totally understand that we all have a different experience but guess what?  We’re STILL all fighting the same enemy.  We’ve all grieved, we’ve all lost sleep, we’ve all had fear, we’ve all had nightmares, we’ve all lost friends & family and we’ve all faced this bastard that keeps killing & hurting our kids.  Your pain is different than mine but that does not make either one of our pain any less valid.  My CHD child is alive, thank God but the truth is, most of us with CHD warriors live with the blood-chilling awareness that the end could come at any time.  Does this make our pain less than someone who lost their child after only a few days?  Who knows?  Who can tell?  Does it really matter?

What I do know is this.  We’re in this together, no matter what our particular stories.  One of my favorite quotes is ‘be kind for everyone you meet is fighting a hard battle” and that would be no better applied than here.  We may disagree with one another but here’s the challenge I am issuing from one heart parent to the rest:

Let’s be kind to one another.  We don’t always have to agree but we should always respect other’s because we just don’t now what this journey has cost them.  If we don’t agree, we will keep it private and between us and will not bring the entire community into it (i.e. mass messages & status updates slamming other parents).  If we can’t solve the problem, we will just agree to disagree without making a huge fuss about it.  We will understand that many of us are WOUNDED, TRAUMATIZED & may be acting out of our own pain.  We will not judge it, but we will offer as much help as we can and if we can’t offer help, we will at least not offer more pain.  The truth is, many people in this community are fragile & we don’t know what could be the “last straw” or the thing that pushes them over the edge.  God forbid that should come from any of us.

A kingdom divided can’t stand, friends.  Is it any wonder we see very little progress in CHD awareness when the community members are shooting their wounded?  It’s time to lay down our weapons that have been directed at each other and start aiming them where they should be…at Congenital Heart Defects & bringing awareness, impacting lives and helping other families.

With love,

Lisa Basquez

Founder & President

Gabriel’s Gift

www.gabrielsgift.net

Congenital heart defects came into my life with the subtleness of a hurricane and had essentially the same effect.  My son, Gabriel, was diagnosed with hypoplastic left heart syndrome and went on to have a successful heart transplant when he was 13 days old.

The experience with Gabriel was somewhat different for me as at the time he was diagnosed, I was a professional counselor who had been practicing for 6 years.  I was also in my second semester of a doctorate program, working toward becoming a psychologist.  As such, I was much more aware of the symptoms I was experiencing (as were my colleagues!) that strangely resembled Post Traumatic Stress Disorder.  This was the beginning of what has become my life passion and the focus of my research & interventions and will be the cornerstone of this article.

Childhood chronic illness effects 31% of American children and impacts the entire family.  Parents that have a child with a chronic illness face stressors such as financial lack, lack of social support, separation from the child during hospitalizations and fears about the child’s life span.  Many parents report their initial reaction to the diagnosis as shock, fear, denial, anger, depression, lowered self-esteem and depression.  The degree of partental distress is related to the degree of caretaking burden the parents face and is also increased by lack of suitable caretakers.

One significant concern for parents with an ill child is that of developing Post-Traumatic Stress Disorder or PTSD.  PTSD is an anxiety disorder that is characterized by reliving the event, avoiding thoughts or reminders of the event and hyperarousal.  Studies have shown that 22-39% of parents with anill child meet the clinical criteria for PTSD with some studies showing that many parents have trauma reactions only slightly lower than those who have been robbery victims.  Often, parents lose their support systems as others are unsure what to say or how to cope with the child’s illness.  One of the major consequences of PTSD is that parents tend to become either hypervigilant, watching out for any sign that something could be wrong with the child which tends to impact the child’s social development or the parent shifts into denial mode, which then causes them to miss critical cues as to the child’s health.

What can you do?

If you’re a parent with an ill child, or a parent who has recently lost a child, you may want to consider seeking professional counseling. Talk to the social worker at your child’s hospital and let them know what you’re experiencing; they may have a referral for you to contact.

Secondly, be kind to yourself.  There is nothing wrong with how you’re feeling & you also need to take care of yourself.  Take time to do things for yourself, such as going for a walk, talking with a trusted friend or going to the gym.  Find a support system by seeking out other families in your church or CHD organizations.

Finally, it’s ok to share with others how you’re feeling and the struggle you’re experiencing.  You may be surprised at the kindness you receive when others begin to understand your journey.

Lisa Basquez is a professional counselor in Denver, CO and is the founder and President of Gabriel’s Gift, a 501©3 that provides support for families in crisis.  For more information or to seek help, please contact Gabriel’s Gift at 303-704-1441 or www.gabrielsgift.net

Did you know…

Congenital Heart Defects are the most

common birth defect in America?

Nearly 1 out of 100 babies dies each year from Congenital Heart Defects?

AND nearly twice as many children die from congenital heart defects in the United States each year as die from all forms of childhood cancers combined?

Gabriel’s Gift has teamed up with uberVida Inc, an independent distributor of OrGano Gold coffee and is hosting a fundraising event to help those families who are impacted with CHD as well as to organize a campaign to raise awareness!

How can YOU help?

It’s simple.  Buy a box of coffee, latte, mocha, hot chocolate or green tea from the person whose name is on this flyer and 100% of the proceeds go to Gabriel’s Gift.  It’s that easy but your purchase will go a long way.  Just think- the proceeds of 10 boxes of coffee can support a family of 4 in the Ronald McDonald house for nearly TWO weeks!

Simply contact Lisa at Gabriel’s Gift and place your order TODAY!

Please contact Lisa Basquez at lisa@gabrielsgift.net or
call (303) 704-1441 for more information about Gabriel’s Gif

Visit us at www.gabrielsgift.net

To The Max Fundraising and Networking Event

Click on the link for more information!

I titled this blog Gabriel’s Gift, because that’s exactly what his life is…A gift.  Each and every day I thank God for the opportunity to live life with Gabriel because nearly 4 years ago, I wasn’t sure I would.

When I found out I was pregnant with Gabriel, I was surprised but thrilled.  What an unexpected turn in my life as I was just starting my doctorate in psychology and wasn’t planning to be a mommy yet but I couldn’t have been happier.  Somehow, from day one, I knew he was a boy. 

The 21st of September, 2006, my (now ex) husband and I went to the ultrasound with great expectation, playfully arguing about whether we would find out the gender of the baby.  About 15 minutes into the ultrasound, I noticed the tech became very quiet and started spending a lot of time looking at the baby’s heart.  The curse of being a psychologist is the ability to read people and I could tell by her body language that there was something very wrong.  She didn’t say anything but said I could get dressed then asked us to wait just in case they needed more pictures.  We waited and they came back to get us for more.  This time, the head of the department was in the room and before I even undid my pants, I was crying.  After they looked at the baby for what seemed an eternity, he turned to me and said “I’m not a doctor so I can’t diagnose anything but I can tell you that there seems to be something wrong with your babies heart”.

I won’t get into all the details here but the next 2-3 weeks were a series of one doctors’ appointment after another, one test after another, one new neonatologist, a new cardiologist, a crash course in congenital heart defects (thanks to google), meetings with Children’s Hospital and the ever looming nightmare: hypoplastic left heart syndrome.

I read everything I could on HLHS and how best to treat it and came to the decision that the baby’s best chance was with a transplant.  With that in mind, I learned everything I could about it, read every book, had about 700 questions in my journal and became a mini-expert.  I also began to pray harder than I ever had in my life, despite being a Chrisitan whose been in ministry for years.  I read books about healing, faith and prayer and began to declare that the baby would live and not die. Thus began the search for his name…It had to be perfect because every time we spoke his name, we were making a declaration about his life.  Gabriel was chosen as it means “hero of God or God’s able-bodied one but I couldn’t pick a middle name.  Then, one day, I was driving listening to a CD by my friend Rick Pino and the song “Mighty Warrior” came on.  The song lyrics are simply “the Lord is with you mighty warrior, so arise”.  Something inside me jumped (maybe it was Gabriel!) and I pulled over right there on the highway, pulled out my bible and turned to Judges 6 where Gideon is called into battle.  The passage says “and the Lord appeared to Gideon and said “The lord is with you, mighty warrior”, and that was it.  That was his name~Gabriel Gideon.  The Hero of God and Mighty Warrior.  I figured with a name like that, we couldn’t lose.

Gabriel was born on Jan. 24, 2007 at a healthy 8 lbs. 8 0z.  He was immediately taken to NICU and the IV’s were placed, meds pumping before I saw him again.  13 days later, he was struggling to survive.  I was kangarooing him at about 9 am one morning and we both dozed off when his nurse came in the room and woke me saying “you have a phone call”.  I was confused and groggy but followed her to the phone.  It was Bethany, one of the transplant coordinators saying “we have a heart for Gabriel and we’re flying out to check it and get it now”.  The rest of the day was spent signing consent forms, calling family, praying, holding my baby son, and grieving for the family who had lost their baby.  At about 6 p.m., Gabriel was taken into the operating room to get prepped for surgery and after a night of updates, we finally saw him at about 4 a.m.

Today, Gabriel is a healthy, thriving young man of almost 3 who is currently learning the alphabet, how to count to 15 and his colors.  He loves animals, Veggie Tales and he loves to tell people “you are who God says you are!”.

I invite you to visit www.cbs4denver.com, type Basquez in the search field and see some of the stories that were done about Gabriel.  Also, he is featured on www.donatelifecolorado.com for transplant awareness.  It is out of this pain that Gabriel’s Gift was born, which is the organization I founded to help families just like you and me.  We provide grief counseling to famlies and we are working to build a unified front with CHD awareness (well and a lot more but this isn’t the forum for that!).

Gabriel is a living, breathing miracle and I thank God for him.  It is my hope that we as a group can conquer CHD once and for all so that other fami

lies can experience the joy I have with my son.