Heavy hearts.

Today I my head has been all over the place. Thoughts that I just cant seem to get away from, that have slowly been creeping up on me for a week or so.

I look at my beautiful boy and I am so thankful for him being here. For his beautiful face. I hold him close, his smell like a drug to me that I just cant get enough of. For months my boy laid in a hospital bed, surrounded by machines helping to keep him alive. Wires hooked to and inside him. Constant beeping became our normal and silence became scary.

I go to his cardiology appointments and I wash my hands before pushing a med through his feeding tube. The smell of the soap flashes me straight back to that hospital room, with all the machines, all the fear.

Its been happening more frequently, a smell, a look he gives. I get brought back to those moments that my boy was so frail, and it reminds me that even though he is doing so well right now, that he has been at a weak point and could easily be there again. Reminds me that one day he will have to have another major surgery (if not more), and in the future, a heart transplant. I think to myself "how could I go on without this little being". I think of my other children, 5 and 4 years old, and all of the memories made with them. All of the good night kisses, hugs, and "I love you". I cant imagine getting him to that age and losing him, after getting to know him so well. I cant imagine losing him RIGHT NOW.

While shopping today I seen a beautiful baby girl around the same age as Waylon, sitting up alone in the grocery cart playing with her mommies car keys. A wave of emotion hit me and I wanted to start crying in the middle of the store. Because my baby doesnt do that yet, and with his condition (even though hes doing well right now) he could be taken so quickly without a moments notice and never be able to.

Tonight two others fell victim to the cruel monster called CHD. One of which I kept up with through facebook. I enjoyed seeing his adorable little face pop up on my newsfeed every day as I scrolled down checking up on family and friends. Looking at him tonight I see my son. The chunky cheeks, the fingers in mouth, the "old soul" eyes.It hits home even more!

This cruel beast has robbed again. Taking memories made and parts of those who knew of them hearts. Families never to get a moment with their precious lil one again. Only favored blankies, pacifiers and pictures left to remember them. Family photos are never the same. A photo of the precious child held by family members symbolizing that they are never forgotten and will always have a place.

So I cherish my sons every moment of being with us. Holding him close to my heart, feeling the rise and fall of his chest and the fast beat of his heart. Smelling that certain smell he has, pressing my lips to his head feeling the warmth of his skin and the softness of his light brown hair. Seeing him smile at his daddy and listening as his brother and sister giggle at his new trick of sticking out his little tongue.

Our thoughts and hearts are with families who have lost. The children taken so soon have been looked at as our own, and have become family. They understand more than anyone day to day struggles with our childrens medical needs, the aggrivation of insurance companies, medical supplies, the hundreds of medications, the dirty looks, and the criticism from those who dont understand or agree with us choosing the fight for our children.

I will never feel that my husband and I's choice was wrong. We have given our son the chance that any person has deserved. I see a miracle every day before my eyes, and I am happy to call it MINE.