We are forever connected...forever family!

It never gets easy..when we in the heart community have to say goodbye to one of our own.  A baby and family who we have laughed with and cried with.  A journey that we have all taken, together.   We celebrate each others victories and give advise about the difficulties our children are facing.  We cry together when the fear and anxiety gets to be too much. Some we never meet, yet we feel so close.  Some we do meet and because instant friends.  That was my experience with Ady.  From the moment we met, we were connected, we were family.

Today, we celebrated the life of Hayden Jeter Dorsett.  I sat in the back of the service, alone and quite.  I promised myself that I would not break down, not allow my fear and sadness for myself or  for my dear friend to break the walls that I had spent days building up.  I ache when I think that I made many promises to Ady that I was unable to keep.  I promised her that Hayden would survive this.  That our boys would be the success stories that other families would cling to.  I promised they would grow up together, leaning on each other.  I promised that they would be kindred spirits...brought together by fate and a special heart.

I wish I could have kept these promises..

The services was breathtaking.  The room was filled with Hayden's smiling face.  A beautiful slide show playing.  Flowers and keepsakes that belong to Hayden about the room.  You could feel Hayden in that room.  When someone is loved that much, they are never far from us.  Just a memory away.  I have many memories of Hayden that I will carry with me.  Ady, Rob and Jackson will always be family to us.  We have walked the same road, felt the same feelings...and although our paths have taken different directions, we are forever connected...forever family.

As I held my dear friend today..I made her more promises that I know I will keep.  Xavier will grow up knowing Hayden.  We will talk of him with love and pride daily.  We will speak to him in our prayers.  We will send him birthday balloons every year.  We will remain close with the Ady, Rob and Jackson.  Jackson and Xavier will be friend.  We will spend time together.  We will cry...but we will laugh again.  Xavier and Hayden brought us together...and together we shall remain.

Thank you Hayden for bringing me to your mommy.  Thank you for opening up my heart a little more.  Thank you Ady for allowing me to know Hayden and for loving Xavier....Thank you for being my friend and for loving me.  As heart moms we are connected in a way that few will understand.  We are forever connected...forever family!

"It is not the length of life, but the depth of life which matters."

Hayden Jeter Dorsett

March 12, 2012- August 16, 2012

A union built on strength and courage..

Three years ago today, I stood in front of my family and friends and promised to to love and stand next to Nathan through good times and bad...and we had no clue how bad it would get.  But now I can honestly say that we also had no idea how GOOD it could be.

Our wedding was a perfect day.  It was so us.  It was a party..live music, great food, drinks for everyone and all the people we loved in one room.  We have been standing strong ever since.  Our marriage was put to the ultimate test when we found out about Xavier's heart.  I can honestly say that  I saw what a real man Nathan is the day we got the diagnosis.  He allowed me to fall apart and stood ready to pick up the pieces, never mind that his world was crashing around him.  He never left my side during labor and stayed with Xavier late into the night while I got some sleep.  He is an amazing father..Xavier just lights up when he walks into a room.  He balances my crazy just right...allowing me to be the super overprotective mother that I need to be while calming the storm that rages inside me when I get the "feeling" that something might be wrong with Xavier.  He works so hard so that I can stay home with Xavier and keep him germ free.  He holds me close when I need to cry and always knows what to say to make me smile.  This heart parent journey is not an easy one.  It is not for the weak at heart or weak of spirit.  It took our marriage and our faith to the edge..and here we stand solid on such rocky ground.  I would have never been able to make it though the storm or find the courage to dance in the rain without him.

Thank you Nate for holding my hand and never letting go...

"Being deeply loved by someone gives you strength, while loving someone deeply gives you courage" - Lao Tuz

We are the brokenhearted..

" The Lord is near to the brokenhearted and saves the crushed in spirit" Psalm 34:18

We often use the term brokenhearted to describe our babies.  However, having a baby with a broken heart, is a domino effect...Xavier's broken heart, broke my heart, broke Nate's heart, broke the hearts of our parents and families...and when we meet another family of the brokenhearted, our hearts break all over again.

Today my heart breaks in that all too familiar way for a heart baby whom has become very special to me and for his family who I am come to call my friends.  I just saw Hayden, who I lovingly refer to as my boyfriend, because I am convinced that the first time we met at the park he winked at me!  I have been madly in love ever since!!  We all spent some time together last week...walking, playing, talking about how well our boys did with their Glen, how much they smile and how strong they are.  We made plans for a BBQ  and for the family to visit us in our new house.  I left Hayden and his mommy that day with a hug and a promise to "see ya soon!"

Now Hayden is fighting for his life.  And I sit at home wishing I could just do something...fighting the urge to get in the car and drive to CHOP to be there for my friend.  I sit by the phone, praying that we get a call or text with good news...news that our prayers have been heard and that Hayden got his miracle in time.

I just wish I would have held Ady a little closer, done more to let her know how much she means to me.  I wish I could have made an effort to spend more time with Hayden.  I wish the boys could have spent more time together.  I wish we would have thought to take a picture of them together.  I have not given up on Hayden...his spirit is unbelievable.  His light shines so bright.  If ever there was a spirit, a light that can overcome..it is his.  

Please pray for our friend, for his family, for his doctors.  We will fight hard, because our children fight harder!  There are other, like my friends, who are fighting today.  Please pray for the brokenhearted!

The heART of preparedness

"The most prepared are the most dedicated"  Raymond Berry

If there were a masters class on the art of being prepared, a heart mom would most defiantly be the professor.  From the moment you hear those words "there is something wrong with your babies heart" you go into super prepare mode.  At first you do the one thing they tell you not to do...you Google..and then you fall apart at the seams...  You start looking at all the post op pictures you can find.  You talk with all the heart moms that you connect with via facebook and other organizations, your heart skips a beat as your read a blog about a warrior turned angle and say a silent prayer of praise when you read a success story.  You start to build your thick skin, playing a scene over and over again in your head that you have not yet lived..handing your tiny, only days old baby, over to faceless figures in scrubs and masks.  You prepare for the worse and can't bare to hope for the best.

As your laying in that hospital bed, waiting on the next shot of pain to take over, your preparing your mind and heart..."don't get attached, don't get attached"  although you know it is hopeless and the second they lay that tiny body on your chest, all that work you have done to prepare goes the window.     You spend a few beautiful days holding and loving your new child, enjoying every second together.  However, in the back of your mind you know you must prepare.  Prepare for the day when your worse nightmare becomes your reality and they take him.  You prepare yourself for "the talk" with the surgeon...when risks of the procedure are discussed:  cardiac arrest, seizure, stroke, infection....death.  The waiting is the worst part, all you can do is pray and prepare.  Finally they take him away and you spend 6 long hours preparing for the next time the phone rings..what will they say, how will I handle bad news, can I really go home without him.

Finally you talk to the surgeon..."things when well...the next few days will be the most critical..." You prepare yourself, your husband, your family for what your baby will look like...motionless, tubes, wires, beeps, wounds.....plead with yourself not to cry...not now...wait till the sun goes down...wait till your pumping..alone with your fear.  You prepared for the battle...but now the real war begins.

In the hospital you prepare to take him home.  You attend classes, CPR, how to insert the feeding tube, how to give your 6 pound baby shots in his legs, how to use the feeding pump, the scale.  You prepare to recognize the signs of distress, heart failure, stroke, seizure...you write down every word, make notes over notes, beg the nurse to please go over it just once more time with you.  You recite the medicine schedule over and over till you are saying it in your sleep...You prepare so that you can keep your child alive...if we can just make it to stage two!!!.....

Then you get the call...its time to come back.  Prepare yourself to do it all over again.  Prepare for the headaches, the crying out, the bulging eyes, the low O2.....prepare for battle yet again!!

Home again...now we must prepare him...milestones have come and gone...he is still so far behind.  It's time to prepare his little body for things that should come naturally.  He isn't rolling over...why isn't he sitting on his own...he will not bear weight on his legs..."what am I doing wrong...I didn't prepare him enough..I failed him..I am strong enough for this."

I think as heart moms we are always in the act of preparing...but we are never really prepared.  We hold our breath each time they place our child on the scale...praying that they didn't lose any weight.  We hold our breaths each time we sit our child down to eat...will he eat anything today?  We hold our breaths each time we wrap the pulse ox monitor around their little finger...what if its too low?  We hold our breaths during each ECHO...just hoping the cardiologist smiles and says "see ya in 6 months"...we prepare for the worse; he lost weight, he will not eat, O2 is too low, he needs an MRI, Cath, we prepare ourselves to hear words like heart failure, transplant, valve replacement....

And so we prepare.  We prepare for the worse, for the best and for the unexpected.  We study, we learn, we share and we fight.  Our skins are thick, our hearts are full and our bonds are strong.  We prepare ourselves and we prepare each other.  It is the heart of preparedness that makes us HEART MOMS!!!

With my fellow heart moms, at CHOP's heart and mind education day...we are preparing for Fontan!!

Super X:  Preparing to take over the world