Tuesday, June 25, 2013

Momma Don't Worry!

     "Momma don't worry."  The last words my daughter said to me Monday as she headed off to heart camp.  Cora has been going to Camp Joy's Heart Camp for years but this past Monday I saw my baby girl, in a different light.  She let me into her world for just a short time!

     The entire ride up she sang her music and danced in her seat, and didn't stop smiling.  When we were almost there she asked me if I knew why she was so excited?  Before I could respond she opened up her feelings to me. 

     "Heart Camp means everything to me Mom. It's the one time of year I can be me, and everyone is ok with that."  She proceeded to tell me "I can just be me!"  
My sweet girl continued to tell me that this one week each year she fits in.  " I don't have to worry that I can't keep up, or that I am tired, it doesn't matter because other kids have the same issues.  The best part, Mom, I don't have to explain my issues or my scar."  
     The part that took my breathe away was when Cora said, " Once a year I get to feel normal.  I know I don't fit in my regular life, but this week, I fit in, and I love it.  No worries, no being different, just being me."  

     Once we got parked at camp I saw her transform from the emotionally up and down little girl I see almost daily,  to a vibrant, outgoing, happy preteen girl.  To see her her shine, if only for one week a year, the way she shined when I dropped her off Monday, is worth every difficult day in between.

I miss her dearly this week, but I know she is so happy and God is protecting her.

Blessings until next time.

Thursday, June 20, 2013

CHD Through My Eyes- A Mommy's View

Discovering you are pregnant with a child with a congenital heart defect......well there are no words to describe it.  Being pregnant with my first child, thinking I was going to rock being a Mom, was all I thought about.  Once I found out my child, the little sweet innocent baby inside me had a heart problem I felt like a complete failure.  My one job God gave me, I thought, was to protect this baby growing inside me......and I failed!  I was crushed, but being the person I am I never let anyone know that feeling until this post, today.

My journey as a CHD Mom has been very difficult but what keeps me in check daily is seeing what my daughter has had to go through since the moment she was born, and how far she has come.

My daughter, Cora, had a rough start from the womb.  During her growth in my belly she was diagnosed with Hetrotaxy Syndrome, AVSD, D-TGA, Pulmonary Atresia, Bilateral SVC, Common Atrium, No spleen, and a twisted brain stem.  Yes I have my emotional bad days but I look at how far Cora has come and realize my emotional mess is worth it because I love her so dearly.

My Blog, my posts, are my way of sharing my story and my hope is to educate people, friends, family, about our families ups and downs with having a CHD child.  but mostly my goal is to help those parents who may be struggling and feeling  alone, as I did and honestly sometimes still do.  Please know you CHD Mommy's and Daddy's you are not alone!
Blessings until next time!

Wednesday, June 19, 2013

CHD, what's that?

What exactly is a (CHD) Congenital Heart Defect?

     A congenital heart defect is a condition that develops early in pregnancy.  It may involve one abnormality or a combination of abnormalities in the structure of a child's heart.  

So what are some of the common defects?
     ** Holes in the walls between the heart chambers
     ** Abnormal Valves
     ** Abnormalities in the blood vessels entering or leaving the heart
Here are some startling facts:
     * CHD is the most frequently occurring birth defect and is a leading cause of birth-defect related     
       deaths worldwide.
     * It is estimated that40,000 babies are born each year with Congenital Heart Defect in the United 
**** My darling daughter is ONE of these babies born with a CHD!!!!!****

Sunday, June 16, 2013

What does it mean to be the parent of a child with a heart defect?

It means going into your baby's room a dozen times a night just to check to see if she's still breathing.

It means standing over her crib to watch her chest rise and fall and when you don't see it move, you begin to panic and put your head down close to your baby's face to try and hear her breathe.

It means that when you don't see the chest move and you don't hear her breathing (because your own heart's beating is drowning out any other sound in the room), you put your finger under the baby's nose to feel the air on your finger-until you wake the baby and it stirs-and your thankful, so thankful that she's still with you.

It means feeling a huge sense of relief when she hears you and opens her eyes and smiles.

It means saying a prayer of thanks for another day.

It means measuring out her medication and panicking if she spits some of it out.  How much did she spit out? One cc? Two cc? Then wondering if you should guesstimate how much more she should have and if you'd over medicate her.

It means checking her nail beds against your own to determine how blue she is today.

It means asking your husband, your mother, your sister, "Do her lips look blue to you?"

It means snuggling her in an extra blanket for fear she won't be warm enough.

It means worrying that even a sniffle could cause an infection that could harm her heart.

It means taking your baby to the doctor and worrying that he will catch something in the waiting room, so you walk back and forth in the corridor until the nurse calls his name and takes you straight back to the examination room.

It means knowing that everyday is a blessing and a gift.

It means knowing that you are the luckiest person in the world, just to be a parent.

It means cherishing every moment, every breath with such intensity that you feel tears come to your eyes for no apparent reason.

It means praying for a miracle to save your baby's life.

It means praying your marriage is strong enough to endure the hospitalization s, separations, and grief.

It means praying for the will to live, even if your baby doesn't.

It means your own heart knows a pain, no parent should know.

It means feeling weak, helpless, angry, and depressed because your child's fate is out of your hands.

It means feeling strong, determined, and brave because you know you have to be.

It means your love knows new unlimited boundaries.

It means your pride in your child's accomplishments is unparalleled.

It means your pain has taught you a deeper sense of compassion than you ever imagined.

It means we are all united by the same feelings.

It means that we all know the mixed up emotions of dealing with death- but more importantly of living with life.

It means that even though we are strangers, we are more to each other that friends could ever be.

1996, by Anna Jaworski