CHD Week - Day Six - Heart Mom

This CHD project I have been posting about for the last five days has been easy until now. I found it on Facebook and it was just supposed to be a picture that represents each of the titles for each day. I decided to take it further and actually post about it. Now that I actually have to talk about my personal experience it is a little hard to do.

Being a Mom is hard. Being a Heart Mom is such a daunting task. I was thrust into a world I didn't even know existed until October 2008. I have to take my day to day mom skills and retro-fit them to handle being a heart mom instead. You quickly learn about pulse ox, blood pressures, blood flow, chambers, valves, not exactly the words I thought would ever be a part of every day vocabulary.

Not to mention all the emotions that come to the surface and you have no idea why. I know they are their because I have lived them. For any Mom who receives life changing news about a child there is a time of grieving. Yes, I said Grieving. In order to take on the marching orders set before you with your child's diagnosis, letting go of the dreams you had for a heart healthy child and accepting the challenge in front of you is very key.

You can be angry, sad or in denial of your child's diagnosis. You can cry so many tears you feel like you have none left to cry. You can be angry; angry at God, yourself or the world. You can barter with a change in your life to make all of this not be true. But facts are facts and they are my child has a CHD. I need to accept this and move forward. Even when you think you have moved on from the stages of grieving sometimes they come back.

Sometimes they come back in the form of PTSD. I know that sounds strange to say but it is true. Living a truly traumatic event and then weeks, months or years later you find yourself standing in the that same room, smelling a familiar smell or seeing an old picture from that very dramatic day it can stop you cold.

For me it was a room. The first CVICU room Madelynn was in after surgery. It was small and a very serious room, especially for the first 24 hours. I remember being in shock.  I didn't know where to stand, what to say; she just lay there so lifeless. There is nothing in this world that will ever prepare you for the first time you see your child after open heart surgery. The dried blood, betadyne stains, the tubes, wires, the beeping and machines. If there was any denial before this moment it made everything very, very real.

Three years later I was walking through that floor of the hospital visiting another heart family. The very serious rooms are behind the staff work station, a set of swing doors and a sliding door. At the exact moment I walked by the swinging door was propped open, the sliding door was open and the sun was beaming beautiful rays of sunshine through that room and it was lit up like Christmas Morning. It stopped me dead in the middle of the hallway and took my breath away.

I was overwhelmed, every day of our heart journey flashed in my mind in a matter of seconds. The Peace and Joy I felt of God's promise of saving Madelynn's life was uncanny. I started crying and could not stop. I walked out of the hospital with tears streaming down my face. To this day, I can not tell you why I started crying. All the days when I was in the thick of it and could not cry or I had to remain strong, I did not have to remain strong that day. I was going home to hug my babies.




A picture of the sun rising in Madelynn's room the morning after surgery.

Having lived all of this, most days when you see me I will be smiling and laughing. Not because that part of the journey didn't matter but I survived it. When I tell part of Madelynn's story, certain words or phrases cause me to choke up but I can tell you her story joyfully. Her story is one of hope and promise, there can be happiness on the other side of this treacherous journey.

I realize not every heart mom has a journey like mine. I know these warriors fight so hard and some earn angel wings instead of a ride home with mom. There is a special place both in life and heaven for these mom's. Knowing how close I came to being one, I hold a special place in my heart for them and pray for them all the time. I admire them daily for never giving up.

Heart Mom's are strong, courageous, unwavering, amazing women who never stop fighting. I never asked to be one of them but I am proud to stand beside them.

TTFN~