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

I have a new interview up at my blog, this time with Daria – a 17 year old living with Corrected L-Transposition with Pulmonary Stenosis.

I first met Dar when she was a fourteen year old camper at Camp del Corazon, a non-profit I volunteer with. Dar and her group of friends quickly became “my” kids, a group I look forward to seeing each year. Daria graduated camp last summer and I am eagerly anticipating her return in a few years – only this time as a counselor!

Click the image to read the interview

I cross-posted this to my blog.

It is fairly common for children to have a security blanket of sorts. Now, this doesn’t need to be a literal blanket ala Linus, but can take on many forms such as a stuffed animal or other keepsake.
I started off with a blanket, but due to a Grandmother who thought “out of sight, out of mind” cold turkey was the best method to break a six year old out of a thumb sucker habit, I had to switch to stuffed animal. (Totally didn’t work, Grandma. Old school child psychology FAIL!)

Specifically, my yellow Puffalump bunny who my mom officially dubbed Boo Boo.

Boo Boo with her hospital bracelet

I tried to give her a proper name for when the nurses and doctors asked, but Boo Boo always stuck.

This noble, stuffed bunny was dragged everywhere I went – sleepovers, doctor appointments and surgeries being her most needed moments of comfort. I never went a single night of my childhood without her either closely hugged to my chest or as a makeshift pillow under my head, her ears as a substitute for my long, lost blanket.

She was there with me during cold echocardiograms, annoying EKG’s, painful IVs, obnoxious student doctor visits and those frightening moments between being wheeled away from my mother into the operating room and officially under the anesthesia.

When I woke up from every procedure and operation, Boo Boo was right there next to me. I wouldn’t know until I was twenty-two that she was never kept in the OR with me (note to parents: Please don’t tell your kids. It’s easier to believe than it is to know).

Over the years she has needed a few surgeries herself – stitch-ups and patches, and years of love has given her a permanent cannot be washed worn look. Since my last major surgery in 2004, Boo Boo has enjoyed a peaceful retirement, sitting quietly on my pink bedside drawers next to where we sleep at night.

I put on a brave, loud and fairly obnoxious front as a child, but part of the ability to do so was having my bunny clutched tight next to me, providing comfort, love and security.

image source

I am beginning a series of interviews with adults and teens living with congenital heart defects. You are invited to learn more about the individual behind the obnoxiously long Latin medical term. This is cross-posted at my blog Glass of Win.

Meet my first interviewee, Carissa!

The interview is quite lengthily, so please proceed after the jump.

Continue Reading »

We’re back at this game, are we now? Waking me up around 6:00am with those obnoxious knocks on my chest, knock knock knock, like a timid religious solicitor? You don’t know if you want to slow down or go for the gold and kick into high gear. I don’t which is more annoying and troublesome – having a full-blown tachycardia episode that sends me to the ER, or this slapdash flutters that make me put my life on hold while you decide what you’re going to do. I don’t know what I did to deserve this half-assed attempt at rebellion. I took all of my medication, I’ve been getting enough sleep, I’ve have not had much caffeine or alcohol in the last week, and my activity level has been it’s usual moderate-low state.

You have no reason to complain. Do you just want the attention? I think so. I think you just want to be the center of attention because a lot of good things have been happening and are coming up and you have been feeling neglected. Mom even took the day off of work because you’re so wishy-washy and she doesn’t know if you’re going to pitch a tantrum or what. God, you are such a drama queen. By the way, I don’t appreciate the headaches, either. I don’t know if they’re necessarily related, but as you came shortly after I started to receive bad headaches, I can’t help but be a little suspicious.

We have a birthday party tomorrow, heart. A play-date with fellow heart patients, so you’ll be amongst friends…You know this! We’re not going to go if you keep acting like this, though. You keep behaving like this and we’re staying right here at home, young lady, and going absolutely nowhere. Is that what you want? You want to be a wounded, self-pitying recluse for the rest of your life? I don’t think so.

I’ll do whatever I can within my power to make you happy and go back to normal. Let’s just try to do our best to stay out of the emergency room, okay? Promise? All right, now pull yourself together and let’s get better!

Dear TAPVR and your faithful sidekick ASD,
I’m writing to you because they say that sometimes it is easier to talk about your feelings in writing. I’m willing to give it a shot, because I have a bone to pick with you.
You see, TAPVR, I don’t particularly care for uninvited guests. And you have chosen to come to our home not once, but twice. You crept up silently, before you so rudely barged in.
Most guests come to be the life of the party. You, on the other hand, came to suck the life out of my children. I guess no one informed you that you were coming to the wrong house, because you see, my children are much stronger than you.
I guess I’m not labeling you correctly. Guests,eventually leave. But you will never leave, will you? No, you will always be around, until the day I die. When my baby has a hard time breathing, you will be the first thought that comes to the doctor’s minds. They will do x-rays to be sure blood isn’t backing up into her precious little lungs, because of you. When my little boy tires, it is you who will pop up into everyone’s minds again.
It is also you who my kids will continue beating, every day of their lives. Again, I’m sorry no one informed you of their ability to do that.
I don’t like you. In fact, I hate you. And I don’t hate easily. In fact, I can’t think of anyone else I hate. To hate is to murder. How I wish I could literally murder you. I would do it in a heartbeat…no pun intended.
I guess though, that I do owe you some thanks. How can that be?
Because of you, I have fallen to my knees more than I would have had you not shown your face. I’m so ashamed to admit that.
You have taught me not to take anything for granted. So many women get pregnant and just assume their baby will be healthy. Not me, no, you took that naivety from me.
You taught me just how precious life is, and that in a beat of a heart it can be gone.
Lastly, you have shown me how strong my children are. Oh how I admire them. I wish I was that strong. I know though, that all of our strength comes from our heavenly Father.
For these things, I thank you.
I hate you and wish I didn’t know you, but I do appreciate all you have taught me.
Your host..forever,
The mom of 2 of the most precious babies, who just so happen to know you far too well.

I recently joined with Formspring, an internet-based open Q&A where people can be logged in or anonymous. Although there are some silly questions asked by my friends, I really opened it as a way for those living with CHD or a loved one with CHD can ask me questions/advice purely based on my experience. I thought I would share the two questions I received thus far and answered.
Now, I do not claim to be an expert on anything other than being myself and my answers reflect this.

Question One: My daughter, who is ten, is having her second open heart surgery this summer. Her first surgery was performed as a baby. How do I prepare her this go around? She is scared and anxious and I feel so helpless? What can I do for her?
Answer: Remind your daughter of all of the potential benefits and opportunities this surgery will bring to her. Will her heart be stronger, and will she be able to do things she previously struggled with? Start talking about life after the surgery – what the new school year will bring, what hobbies and interests to take on. I know it is difficult to get her mind off of it, and you can’t 100% but having a goal in the future beyond the surgery and recovery time is ideal. For the immediate future, the time between now and summer, why not start a creative project? Does your daughter enjoy crafts, writing, painting, swimming, singing, yoga? Finding an outlet to relieve the tension she feels & learning the ability to express her mood & feelings is essential.

Question Two: I also have a CHD, and had openheart surgery 1 1/2 years ago to replace my valve. I have a toddler, and I am living each day terrified, feeling like I have a ticking time bomb in my chest, panicking that I won’t see her grow up. Did you need therapy?
Answer: I did, mostly in high school because I was so stressed out and putting myself in the ER with stress-induced tachycardia. Therapy is nothing to be ashamed of – in fact, it’s probably good you are talking to someone who is hopefully giving you coping techniques. I want to assure you though that you DO NOT have a ticking time bomb in your chest; you have a fabulous testimony to the wonders of technology and medicine in that valve replacement, which has given you the *opportunity* to see your daughter grow up. Take care of your body, live a healthy life filled with love and family. Any time a negative thought slips in, I want you to snatch it like you would a gnat swarming next your face, and ask yourself, “Should I let myself go to this dark area of worry, or should I instead spend quality time to my child?” The answer is up to you.

my formspring

Here’s some trivia, in honor of both Congenital Heart Defects awareness week and the start of the 2010 Winter Olympics in Vancouver. Did you know that the US snowboarding phenomenon Shaun White also has a congenital heart defect, specifically Tetralogy of Fallot? It hasn’t stopped him from accomplishing some pretty impressive things, why should it hold our heart kiddos back either? According to his bio he had two heart surgeries before he turned 2. And look at him now! He is such an inspiration.

Also, I wanted to share this video that gives me inspiration every time I see it. It’s all about hope and what our heroes can accomplish despite the physical defects they were born with.

The more I read about heart children, and adults with congenital heart defects the more inspired I become. We are blessed with Bilal who has endured one major open heart procedure and is the picture of health at age three, although we know he will most likely need some form of cardiac procedure later on in life. But there are so many children and adults who have undergone so much more than Bilal has, and still live their lives to the best of their potential, and in many ways even surpass that. That is true heroism.

This is a link to our blog.

I know I blame you a lot, and not every source of misery originates

with you alone. You know how I love to throw parties, however, and a

pity theme is very en vogue. I don’t have to spend a lot of

time in the kitchen worrying about food because there isn’t but one

attendee and lucky me I win all of the games!

Seriously though, I know you can’t help but be yourself, as you were

brought and formed in this world. Like any of us. But where does blame

go? My genetic contributors? I think they punish themselves enough;

they never needed my help. The Universe and its wonderful wizard

behind the curtain? Maybe, though it’d be awfully egocentric to truly

believe such attention to detail was bestowed on li’l ol’ me.

The sad truth of the matter is there is no one to blame. No malevolent

entity or lack of prenatal care. The truth of it is: shit happens.

It’s a frightening truth, honestly. It’s easier and more comforting to

believe everything in life, no matter how minuscule to the workings of

the universe it may be, is purposeful. It’s just easier for everything to

have a name tag on it to better mentally organize and cope. Oh, sure,

you can call it transposition of the greater arteries with ventricle septal

defect but really, in actuality, it’s just One of Those Things.

Take 15% off any piece of my CHD-inspired HEARTwork collection and if you mention “Blog4CHD” in the notes I will provide FREE S&H to USA & Canadian residents!

If you’re living in or going to be in the Southern California area in April, consider stepping out for Gala del Sol, a glamorous black-tie charity event to benefit Camp del Corazon, a non-profit organization benefiting children with cardiac issues.

It’s a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus “I don’t want to leave, I like it here, and I will miss you”. He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?” The angel smiles and says, “I guess that will work”. But the little angel is still a little scared. He asks,”Will I be okay with only half of my heart?” Jesus replies,”Of course you will, I have other angels there that will help out, and you will be fine.” Then Jesus gives the angel more details about his plan. He says “When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart”. “Enjoy your time with your family, play and laugh everyday.” “And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.”     Author Unknown