It's A Date

Not a date I am looking forward to, but a date indeed.  April 13th Paxton will be having his second open heart surgery in a mere 6 months.  To date he has endured and survived the Norwood (open heart surgery at 4 days old), surgery to place a g-tube (feeding tube), living the first two months of life in a hospital bed and just recently a heart catherization.  More medications than I can count and more needles and i.v.'s  than any person should have to endure. 

I knew the time was coming.  It's still hard to wrap my head around how our lives have changed. It's hard to wrap my head around the fact that Paxton is not well.  I mean he's almost 17 pounds. He laughs. He cries. He appears to the unknowing eye, healthy.  I just can't believe we have to do this again.  I am more terrified than I can ever put into words.  I spend nearly every minute of every day with Paxton on my hip or by my side.  I cling to moments with him always knowing in the very corner of my mind that there is the unknown.  It makes them more precious.  More sacred.  He sits on my lap as I write this, happy as a clam. It's like he's telling the story with me.  I want more than anything to be able to change this.  To continue living the happy, simple, little life that we are living. As if nothing were wrong.  To anyone who came into our home, it's obvious that something is wrong.  Medications and syringes fill the cabinets.  A feeding pump sets in the closet should it be needed.  A pulse ox machine is never far behind. Binders of medical records fill our cabinets.  Lists of drugs, pharmacies and various doctors line the inside of "Paxton's cupboard. Yes, he requires his own set of cabinets. My phone contains every piece of information that might be needed about him at any given time. His bathroom is full of cleaning supplies for his g tube, alcohol wipes, betadine and a heater. To us, this is normal.  "As if nothing were wrong" means not living in a hospital day in and day out.  It means being here at home doing whatever is necessary to resume some type of normalcy in our lives. Shouldn't I be at Gymoboree or something with him...

I don't want to go back there. I don't want to watch the clock tick so slow my skin crawls. I don't want to kiss him good by and not know.  I don't want him to suffer. To be in pain. I don't want to not be able to hold him.  To make things right for him. Isn't that my job. To take all this away for him...and I can't.  Yes, I know he won't remember, but that does not make it any easier when you see your child suffering.  

He is so amazing, beautiful and yes strong. I know this. I know he is pretty much a rockstar.  I know he has soared through everything thus far.  Oh' it's just the unknown. The what if's. The, could this be the lasts... Ahh! The only way I can describe it is paralyzing. Is it negative? Maybe a little, but the reality is, it's open heart surgery. I can't go in blind. I know the risks. I have seen the risks in a beautiful little boy who beat the odds (Paxton's heart brother- "A-Man") While I more than believe Paxton was given to us for a purpose and I more than believe he is nowhere near done with his purpose, I am still racked with fear.  So is my husband. We sort of tippy toe around it, for fear once one of us loses it then we both go. He loves our little man. While he is still understandably terrified of his meds and leaves most of the medical stuff up to me, he loves him through and through.  I worried he may not love him fully, but I was wrong I see how proud he is of him when he talks to him. It warms my heart.  

I lose at the most inopportune moments. I go, go, go and then something triggers something and it's all downhill from there.  Most days, I am ok.  It's here and there when I least expect it that the reality of it all knocks the wind out of me.  Just yesterday I realized just how much fear I harbor in the back of my mind. While I seemingly go about life, the fear lines every cell of my body and it's only when I lose it that I realize how it envelops me. I do good most days, really I do, it's just you realize when the hot tears pour down your cheeks as if they will never stop that day to day may be ok, but inside it's bubbling up, lurking around every corner.

It is what it is ya know. Gotta do what you gotta do and we will. We will dive in head on and hope and pray for the best.  I will be on bended knee for the next month bargaining and begging,  hoping and praying.  I will pack him up and take him where he needs to be and I will hand him over. I will do what I am supposed to do.  I will melt like a snow cone in Summer when I do, but I will do it.  My heart will be in my throat and 5 hours will surely feel like a lifetime. I have not forgotten each painstaking minute from last time, but it's time. We will forge ahead just as we have done thus far. Please pray for our baby boy. Please pray that he continues his purpose here on Earth with us.