Walking for a cause

On November 6th, we will be gathering with friends and family at Raymond James Stadium to raise funds for reasearch on heart disease and stroke.  Of course, our personal cause is to raise awareness for congenital heart defects.  1 out of 100 babies are born with a heart defect.....that means 10% of babies are born with a heart defect. Doesn't that seem like a lot?  Mateo was born with the most severe of all heart defects.  He has 1/2  a working heart.  I've heard that out of all heart defects, only 4% are HLHS.  What odds.  But it seems that the longer I am involved with our HLHS support group, more and more and more moms and dads are added to the group daily.  Why are so many babies being affected with this?

This will be our 3rd heartwalk.  It seems that every year we participate our team gets bigger.  I'm very thankful for that because it means more people are being made aware of what Hypoplastic Left Heart Syndrome is.  More people are aware that this is real and it severely affects lives.  And more people are aware that there is no cure for this and nothing we know of that can prevent it...because no one even knows what causes it! 

So, we'll walk again this year, raising money and awareness.  If you want to help us spread the word on awareness, your job is easy.  There's a lot of things you can do.  You can visit www.tampabayheartwalk.kintera.org/curechd and join our team.  Come out and walk with us.  We're meeting at Raymond James Stadium at 8am for the 3 mile walk.  If you let me know your shirt size, I'll have a tshirt made for you.  If walking isn't "your thing", than visit www.tampabayheartwalk.kintera.org/masher and support us with a small donation.  To spread more awareness, get educated yourself and let people know about congential heart defects.  You can visit http://www.mattersoftheheart-online.com and print out brochures to give to friends and family to let them know all about CHDs.  Mateo was 1 in 100. Help us prevent that for someone else.

A Poem by another Heart mom that describes it all...

I don't know who wrote this, but its beautiful to me because it describes EVERYTHING we have gone through. Its amazing that I can relate to each and every line of this poem and it speaks directly to my heart and for my heart. It describes everything perfectly...the trials we went through in the beginning of this journey: the worry, the uncertainty, the fear and the self doubt. All the physical things we go through on a daily basis like giving boat loads of meds, checking for blue fingers and lips, making sure they're breathing right while sleeping, CONSTANTLY calling the pediatrician's and cardiologist's office and that horrible feeding tube!!......and then the surgeries and hospitalizations and all the feelings that those bring out....and the positive things:  the friends we've made through this that share our thoughts and emotions.....and the hope and trust and confidence we have now. Its all exposed in this simple poem. It amazes me every time I read it, so I'm sure this won't be the last time I share it.


You passed me in the shopping mall,

(You read my faded tee)
You tapped me on the shoulder...
Then asked, "What's a CHD?"

I could quote terminology......
There's stats that I could give...
But I would rather share with you...
A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....
It's wondering...Lord what's your will?...
It's monitors and oxygen tanks...
It's a constant reminder...to always give thanks...
It's feeding tubes, calories, needed weight gain...
It's the drama of eating...and yes it's insane!

It's the first time I held him...(I'd waited so long)
It's knowing that I need...to help him grow strong...
It's making a hospital...home for awhile...
It's seeing my reward...in every smile.

It's checking his sats...as the feeding pump's beeping...
It's knowing that there... is just no time for sleeping...
It's heart caths, x-rays and boo boos to kiss...
It's normalcy...I sometimes miss...

It's asking...do his nails look blue?
It's cringing inside... at what he's been through.
It's dozens of calls to his pediatrician...
(He knows me by name...I'm a mom on a mission)

It's winter's homebound...and hand sanitizer...
It's knowing this journey...has made me much wiser.
It's watching him sleeping...his breathing is steady...
It's surgery day...and I'll never be ready.
It's handing him over...( I'm still not prepared...)
It's knowing that his heart... must be repaired...
It's waiting for news...on that long stressful day...
It's ...praying...it's hoping...that he'll be okay.

It's the wonderful friends... with whom I've connected...
It's the bond that we share...it was so unexpected...
It's that long faded scar... down my child's small chest...
It's touching it gently...and knowing we're blessed...

It's watching him chasing...a small butterfly...
It's the moment I realized...I've stopped asking..."why?"
It's the snowflakes that fall...on a cold winter's day...
(They remind me of those...who aren't with us today)
It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!

It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

And no...we'll never be the same...

It's changed our family...
This is what we face each day...
This is...a CHD

Fear is real

It has been a bad week. Too many losses in the heart community. It always seems to hit me so hard, rattling my teeth and shaking my bones. My heart breaks for each and every family that loses their loved one and I cling to Mateo even harder. There is so much deep-seated fear that comes out of its hiding place on days like this. All the worry and fear of losing Mateo too early comes bubbling to the top and is so crushing, I find it hard to breathe between the sobs. It takes time, but I finally get to a point where I can bury the fear again. But every time another CHD warrior loses their battle, the covers are ripped off my fear and it’s there…open, raw and naked….staring me in the face. And that seems to be happening a lot lately. Too often. I wish people didn’t have to face such tremendous pain. I wish there was no such thing as tears of sadness. That only happy tears existed. I know someday that will be true, but for now, it’s just very hard. I resent HLHS. I HATE HLHS and the extreme sadness and shambles that it leaves families in. The heart wrenching pain it causes people and those close to them.


Mateo is doing so well right now. In fact, we just saw his cardiologist for a check-up a few days ago. He got a glowing report and I basked in it all week. Every single person I have met that has been affected by a CHD…whether it’s a CHD warrior, a CHD warrior parent or the parent of a CHD angel…..has described this journey with HLHS as a rollercoaster. Every single one. And it’s true. The day we saw Mateo’s doctor was an absolute high. Mateo has great heart function. No valve leaking. Great O2 sats (for a heart baby) and good blood pressure. Then the days that the CHD community loses another warrior is an absolute low. And the difference from high to low is so swift, so fast, it catches me off-guard. And again I am forced to face Mateo’s real situation. The reality is, he has a heart defect and he could be gone at any moment. That thought numbs me to my bones. I know that none of us have any guarantees of making it until we’re 80 years old, but that fact is glaringly real when I think of our heart survivors. God tells us that our lives are nothing but a vapor…that we’re here for a short time and then we’re gone. But these babies, children and young adults are gone too soon. 20 years is not a vapor. It’s barely a whisper. A candle blown out too soon. I know these babies and children may be better off in heaven, than on earth struggling through life. I know that Mateo would be happy and whole in the lap of Jesus, but I would not be better off. So maybe this fear of loss is really selfishness in disguise. Or maybe its just part of being a mother. For now, all I can do is try to trust. Trust in God that He will do what is best for everyone. Trust that modern medicine will come up with something to save these precious loved ones. Trust that we will someday have long-term statistics for HLHS and know that our kids can have a future. And for now, I will try to cover up the fear with feel-good memories of Mateo’s last appointment. Stuff it down deep so its not staring me down. It’ll be there, whispering in my ear, but at least its just whispering and not screaming. With love comes fear. Because if you have fear, it means you have something to lose.

More worries of a heart parent

"Why do we, as parents, worry so much?  There is always something to worry about when you have kids.  Always a 'what if' that plagues the back of the mind.  Why do we, as parents, place so much guilt on ourselves when it comes to our kids?  Why do we, as parents, feel a sense of failure over things that we cannot control?  Worry and guilt and failure.  Do they ever go away?"
  These are my thoughts tonight as I am desperately looking for the little piece of paper that had Early Intervention's phone number.  A piece of paper that I am almost sure I threw away, or tossed carelessly in the back of a drawer somewhere, thinking I would not need that number again. 
  Here's a little history:  When Mateo was five months old, he started physical and speech therapy. He wasn't "up to speed" with certain develpment milestones.  Most of this was due to the feeding tube he had placed at one month old.  Since it fed out of his stomach, it was uncomfortable for him to be on his belly.  His absolute HATE for being on his belly made him behind when it came to all his gross motor skills.......rolling over, sitting up, crawling, etc.  So he started physical therapy to help him catch up.  He also started seeing a speech therapist for feeding therapy to help him start eating by mouth instead of relying entirely on a tube to feed him. 
  Mateo had physical therapy for 4 months when his feeding tube was removed.  After that, he caught up on all his gross motor skills within two weeks.  A week after it was pulled, he was rolling over and sitting up all on his own (at about 8 months old).  Two weeks later, he was crawling.  He walked at 14 months old.  Not ahead of the game, but certainly not way behind either.
After he started walking, there really wasn't much need for therapy.  Other than a little "maintenance" visit here and there, he really didn't need it.  And since he didn't have a feeding tube anymore, he didn't need the speech therapy.  Mateo was discharged from speech therapy at 1 year old.  Over a year ago!  And he hasn't seen the physical therapist since last October.  It was a very freeing feeling when we signed those discharge papers.  Our week was much lighter in appointments than it had ever been since Mateo was born.
  The problem is, Mateo needs to be re-evaluated.  Some things have come up now that he is 2.  And I'm dreading making this phone call.  I have already put it off longer than I should have. 
 I consider myself pretty laid-back in regards to his development.  I have always said that I won't push him to do things....like potty-train early, speak complete sentences early or start him on a "my baby can read!" path.  I always believed that he would figure things out on his own (with a little guidance) and that he'd let me know when he was ready.  After all, I don't plan to have an 8 year old still wearing diapers or a 12 year old that can't talk or read.  I know each child is different and Mateo would do all these things when he was ready at a reasonable age.  BUT.....certain doubts have started creeping in.  Where doubt is, there is worry. Where doubt is, there is that faint glimmer of guilt and failure. 
   My worry comes from Mateo's vocabulary.  Its not a BIG deal, but its enough to make me start wondering and worrying whether or not he's on the right track.  He is so smart!  And he understands so much!  But he is having a huge issue with communicating what he wants to say.  He has made up his own sign language for things and acts out some of what he wants to say.  He says words and talks all day long, but most of it is unintelligible to me and everyone else.  My heart breaks a little bit for him when he comes to tell me something that he seems to find so important but I have no idea what he is saying.  I can't even be sure if what I am saying back to him is what he is wanting me to say.  Sometimes, I'll reply with my best answer (since I have no idea what he just said) and he just gives me.....this look.......like, "that's not at all what I just said, mom".  It makes me so sad!  I really try not to compare him to other kids.  For the most part, I don't believe in doing that.  But Mel and I have noticed how so many kids his age have a much bigger vocabulary than him (not just a couple kids, but many)  and some are even talking in long complete sentences! 
  So, tomorrow I will call for an evalutation.  And I feel that, most likely, he'll begin speech therapy again.  He already has an appointment with his physical therapist for tomorrow for some other issues that we want to have looked at.
Having these therapies back, when we were so free from them, feels in some way like failure.  And not that Mateo is the one that failed, but that somehow, somewhere along the line, I failed him.  How?  I don't know.  And I can tell myself that that's not reasonable...but that little tiny voice in the back of my mind keeps popping up at the most inconvenient times to tell me its a failure of some kind. 
    Some of you may be saying, "Its just therapy for crying out loud.  What's the big deal?".  I have been telling myself that for a few days now!  Well, its really not a big deal.  He'll get the help he needs, get back on track and we'll move on with our lives like we did before.  But for now, it feels like a bigger deal than it probably is. 
    When we were discharged from therapy, it felt like a step in the direction of normalcy.  Mateo has had a beginning FAR from normal.  So much about his life has been un-normal.  And he doesn't have a body that looks normal.  He has a long battle scar all the way down his chest.  His "zipper" as we call it....which will have to be opened yet again within the next year.  His chest is a little broader than most, from having that breast bone broken, I'm assuming.  He has what looks like a 2nd belly button from where the feeding tube used to be.  He has more scars than one could almost count.  He's always on some kind of medicine.  He'll most likely have a life of certain limitations.  While to us, all these things make him so, so, SO special it is still going to set him apart from others at some point.  I am so proud of all he's been through and want so badly for him to see all this as accomplishments some day.  So to have one "un-normal" thing crossed off our list seemed to lighten the load a little bit.  And to have to go back to it, well, is a little disappointing. 

I don't suppose I will ever stop worrying about Mateo.  Like most parents, I'll always have something to worry about.  And if I ever do not have something to worry about, I'm sure I'll worry that I'm not worrying enough!  But I tell that little voice back there to be quiet and remind myself to relish and enjoy these days.  The days that Mateo feels well.  The days that he's happy and content and taken care of.  And while I torment myself with worry from time to time, he's completley and innocently careless.  In fact, he'll be loving therapy because he gets to be the center of attention....just the way he likes to be!

The Day I Became a Heart Mother

I found this poem on what it means to be a heart mom and I loved it.  I don't know who wrote it, but I could relate to each and every line of it.

The Day I Became a Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my child was sick.
I thought, "am I to blame"?
I don't think I can handle this.
I am really not that strong.

It seemed my heart was breaking.
I have loved him for so long.

I will not give up on this child.
I will listen to their advice.
I will give my child any chance.
No matter what the price.
I will learn all that I need to help my child thrive.
I'll even use that feeding tube.
My child must survive!

Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
I have to accept our fate.

When the monitors beep at night, it serves as my reminder.
How many parents would love that sound.
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my child's bed.
I watch him sleep for quite a while.
I bend down and kiss his head.
I cry for the parents whose hearts have been broken.
I look to You wondering why?
Oh Lord, I just can't know your ways....no matter how I try.


And yet, I trust you hold his life, and guide us through each day.
My mind says 'savor each moment he's here',
but my heart begs, "PLEASE let him stay"!


From pacing the surgical waiting room, to sitting by his bed.
From wishing for a good nights sleep, to learning every med.
From wondering, "will he be alright?", to watching him reach out his hands.
With every smile my heart just melts, despite life's harsh demands.


For all who see that faded line.
I look to them and smile.
You see, my child is loved so much.
I would face ANY trial.
That scar I trace with my finger (It's the door to his beautiful heart).
God must have known how much I'd love him (Just as He loved him from the start).


A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all your tears.


Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day.......
When I became a "Heart Mother".

~unknown author~

Life's Lessons Are Rarely Easy

Mateo will be turning 2 next week. I cannot believe I am the mother of a (almost) 2 year old! There was a time when I didn't know if I would ever see this day. Or that my son would ever see this day. And while I am excited...ecstatic really...there is a little bit of dread under all that excitement. The more days that pass, we are brought closer to what I call "the unknown". Right now, we're doing great...health-wise. Mateo had a glowing report from his cardiologist at our last visit and I don't want that to change. We're in, what is called, the "honeymoon stage"....the period of time between Mateo's 2nd and 3rd surgeries. I don't want that 3rd surgery to come because I don't know what lies beyond that for us.

I have always been a person who is very aware of mortality. Aware that life doesn't last forever. That time slips away so fast and I can never get it back. That no matter how long the days seem, the years are gone in a blink of an eye. And this awareness has reached its fullest after having my son. I had all these fears that his life was going to be gone before he even got to live it.

But here we are.....a week from his 2nd birthday. And what a ride these last 2 years have been! He has brought me more joy than I have ever known. More fear, more sadness, more love, more laughter....more quality of life.....than I have ever known. That's a lot to go through in just 2 years. Only 104 weeks. Roughly 730 days.

The dread lies in knowing how quickly he will go from being my little boy to being my big boy...my teenager....my grown man. There were so many days that I wished he could just stay my little baby. Now I'm wishing he could just stay "my little boy".

And while I want to turn back time, I am overjoyed at how much he has grown. He learns so fast! It amazes me every day how lightening-fast his brain seems to work and I often wish I had a tenth of that now! I am surprised every day by something he does. Something he comprehends. Something he puts together on his own. Words that he says that I didn't know he knew....and using them in the right context! It amazes me and makes me so PROUD. And so thankful to God that he let me keep this little miracle boy.

The truth is, every stage with Mateo has been fun. Its so new and exciting. To be able to see the world through a toddler's eyes is a gift. Everything is fresh and new.

I have also learned a lot about myself in these last 2 years. I found strength that I didn't know existed. I found out who I am. I learned who I am as myself. As a wife. As a Christian. As a friend. I learned a lot about the strength I have in my marriage and in my faith. I learned that I have a whole world full of support and love...and when I painfully fell to my knees, so many were there to lift me back to my feet. If I learned all of this in only 2 years, how much more will I find out in the next 2 years? The next 4 years? The next 10? Yes, life is a learning process.

And I wonder what life lessons Mateo will learn. So I am excited to celebrate his 2 year mark of life. He fought for this tooth and nail and deserves to celebrate. And as much as I want to push away the coming years.....at least for a little bit.......I am excited to watch him grow. As the song says, "No, life ain't always beautiful, but its a beautiful ride."

God Is Good!