Saturday, March 13, 2010

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. 

post signature

4 comments:

Shay said...

Jenn, All heart moms have been with you are. My little one just turned a year old and is almost walking. We just had a heart check up and are now off all meds. but aspirin. After the Glenn everything changes you will first notice how pink he is and then how much energy he has. The hospital stay was hard for us. It did not take her long to realize that white coats are bad. I had them take their white coats off before they came in. If she was sleeping I said that they needed to come back. Just somethings to think about. Stop by the blog and say hi. I'll help you out anyway I can. from one heart mom to another.

rudysbeat said...

thanks for summing up the feelings we carry so beautifully. we will be reading and praying as April 13th approaches.

Rolf and Trish (parents of Rudy)
Santa Barbara, CA

Anonymous said...

Hey was thinking about you, so i stalked your blog, sorry, bored and a bit lonely,, anyway i cried so very hard, not sure why the pic of you holding paxton made me cry, i just remember how tough you were, and are. Also noticed your shout out to A-rock, please know that I am praying for you, always. Also know that Paxton will most likely make this thing looming called Glenn look easy,, and he is doing so very good now, he is going to be doing 20x's better after his glenn. I hate hlhs, I hate the struggle, and yes we definately should have been at the gymboree, or baby gap, target, starbucks, whatever, but we probably would never have met, and must say you made spending month after month, day after day in the CVICU almost normal, and fun, kinda like a breath of fresh air... This journey is not over for us, it is like climbing a mountain some parts are incredible,easy,beautiful,, you dont even notice the climb,,, other parts are harsh, cold, dangerous, keep your eye on the top, keep your fear at bay, know that God will never leave you, and when you dont have strength, and you think you just can not do it, and you are in the dirty bathroom at the hospital crying, sick, and scared that he is there,, when you are so confused as to why this is happening, he is still there,, how do i know,?? I was alone in the dirty bathroom crying, puking, scared, alone, wondering?? how did my heart boy become a brain boy, how does this happen?? Utter despair, and yet never lost sight because God was still there. You will find comfort, he has promised it to you, and you deserve it. Miracles real miracles, not the stupid petty stuff people say to try to get others to buy into the hype of religon discuss, no real ones, like pax going home before thanksgiving, like asher moving his right arm, those are real miracles,, our boys arent going anywhere, they are the face of God and he can not be ingnored, they are the real miracles, the ones that people can live a whole lifetime and never see,, anyway i miss you, and if you need anything i am not far,,, if wallace isnt home asher isnt a stranger to being at ACH,, love you

Anonymous said...

Hey was thinking about you, so i stalked your blog, sorry, bored and a bit lonely,, anyway i cried so very hard, not sure why the pic of you holding paxton made me cry, i just remember how tough you were, and are. Also noticed your shout out to A-rock, please know that I am praying for you, always. Also know that Paxton will most likely make this thing looming called Glenn look easy,, and he is doing so very good now, he is going to be doing 20x's better after his glenn. I hate hlhs, I hate the struggle, and yes we definately should have been at the gymboree, or baby gap, target, starbucks, whatever, but we probably would never have met, and must say you made spending month after month, day after day in the CVICU almost normal, and fun, kinda like a breath of fresh air... This journey is not over for us, it is like climbing a mountain some parts are incredible,easy,beautiful,, you dont even notice the climb,,, other parts are harsh, cold, dangerous, keep your eye on the top, keep your fear at bay, know that God will never leave you, and when you dont have strength, and you think you just can not do it, and you are in the dirty bathroom at the hospital crying, sick, and scared that he is there,, when you are so confused as to why this is happening, he is still there,, how do i know,?? I was alone in the dirty bathroom crying, puking, scared, alone, wondering?? how did my heart boy become a brain boy, how does this happen?? Utter despair, and yet never lost sight because God was still there. You will find comfort, he has promised it to you, and you deserve it. Miracles real miracles, not the stupid petty stuff people say to try to get others to buy into the hype of religon discuss, no real ones, like pax going home before thanksgiving, like asher moving his right arm, those are real miracles,, our boys arent going anywhere, they are the face of God and he can not be ingnored, they are the real miracles, the ones that people can live a whole lifetime and never see,, anyway i miss you, and if you need anything i am not far,,, if wallace isnt home asher isnt a stranger to being at ACH,, love you

blog archive

Search This Blog

My Peeps

Visitors