I was listening to the radio the other day and all I could think of was how many CHD angels there are.  I know quite a few but I know there are thousands more.  So so sad!  I have grown to love these children though I never met them or there parents.  Some parents I do know, have a very special place in my heart. CHD parents are strong, faith-driven, and loving. I wrote this poem for the CHD angels and their families…..Prayers for you and your family and I cannot wait until the day, I get to meet your angels!!                                                    

                                                 MEMORIES OF YOU…

As I am walking through a crowd, I catch a glimpse of your face,

My heart races, I feel my muscles tighten as I fight the tears away.

I close my eyes and memories flood my mind,

Oh how I wish I could go back in time.

I remember the day I saw your sweet face,

I can remember holding you, such a sweet embrace.

I think of the times we got to share together,

In my heart and my thoughts forever.

The nights I sat and cried by your side,

The nights I prayed for you to be alright,

The days we spent trying to cope with the truth,

The hours online learning about what’s wrong with you.

The tears and prayers and cards that sad day,

The day you got your wings and fluttered away.

I think of what you would be today,

Who you would look like, what you would say.

I lay in the bed and cry sometimes at night,

Wishing you were here laying by my side.

I know God is holding you telling you about me,

I want you to know, in my heart forever you will be.

So next time I see you in a somewhere, some place,

I know its you, my guardian angel keeping me safe.

Riley is my life, so is my other kids. They are all so important to me but sometimes I wonder, do I do enough with my heart healthy kids as I do with my CHD kid? So many times I sit and think, and I neglecting my other kids? Do they understand why Riley needs more time than other kids?  The end of May, Noah one of my heart healthy kids had his tonsils and adenoids out.  One night we were talking and he said “so I am having surgery like baby Riley?”  ” Am I going to have to fly away and they fix my heart too?”  “That’s surgery”  I just explained about the types of surgery but it was then I realized even more that CHD affects the siblings just as much as parents.  We somewhat understand but kids don’t.  I decided to sit down with my other kids and explain Riley’s situation and some friends of ours with heart babies.  Of course my older one gets it but the younger are still apprehensive of doctor visits for Riley because they think I am going away with Riley to have more surgery.  I know they will understand one day but it is so important to explain to your kids CHD’s.  I have realized that CHD affects EVERYONE in the family.  Not just me, or Riley, but my kids too….

Hello.  My name is Angee and I am the proud mother of a CHD child.  My daughter, Riley Nicole, was born December 30, 2008 with Transposition Of the Great Arteries.

My pregnancy was normal. She was full term.  We she arrived into this world, she was blue, not crying, so lifeless. They whisked her off and can recall seeing the nurse walk by me.  About 5 minutes later, they came back and said she was having some breathing issues and they would keep me posted.  A little while later, 3 doctors walk in and start talking about her heart and what was wrong with it.  What the heck!  I had no idea even about Heart Defects.  They wheeled me in to see her hooked up to a ventilator and all these tubes and medicine.  I got to touch her and then a few minutes later, UMC was there to take her to Batson Hospital.  A cardiologist called me early the next morning saying they were going to do a procedure to keep the hole in her heart open.  She was here for 8 hours and she was having a heart operation.  I finally got out of the hospital and went to see her.  It was heart breaking!  The medicine had caused her to quit breathing so she had a ventilator and all these tubes and wires and machines and medicine.  Two days later, we fly to DC to have surgery.  The night before surgery, I FINALLY got to hold her.  I remember I think I told her everything about her siblings and me and her dad and sang every song I could. The hardest part, handing her to someone else.  The surgery took about 6-8 hours and I was a nervous wreck.  I met with the surgeon and it went well.  I fell  when I saw the chest tubes, and wires, and lines all attached to this beautiful baby who was only 6 days old!  We stayed in DC 10 days and flew home. 

I thank God everyday for the gift I have and know that she is my hero.  She brightens my day no matter what. I know deep down that she knows that she is special.  I am blessed that God chose me to raise her and I will spread her story and others stories until there is education and awareness of this!

God bless!