Monday, December 20, 2010

Why...


A mother's perspective

You passed me in the shopping mall...(You read my faded tee)You tapped me on the shoulder...Then asked..."What's a CHD?" I could quote terminology...There's stats that I could give...But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD?
It’s Lasix,aspirin,Captopril…
It’s wondering…Lord what’s your will?…
It’s monitors and oxygen tanks…
It’s a constant reminder to always give thanks…
It’s feeding tubes, calories, needed weight gain…
It’s the drama of eating…and yes it’s insane!
It’s the first time I held him…(I’d waited so long)
It’s knowing that I need to help him grow strong…
It’s making a hospital home for awhile…
It’s seeing my reward in every smile.
It’s checking his sats as the feeding pump’s beeping…
It’s knowing that there is just no time for sleeping…
It’s caths, x-rays and boo boos to kiss…
It’s normalcy I sometimes miss…
It’s asking do his nails look blue?
It’s cringing inside at what he’s been through.
It’s dozens of calls to his pediatrician…(She knows me by name…I’m a mom on a mission)
It’s winters homebound…and hand sanitizer…
It’s knowing this journey has made me much wiser.
It’s watching him sleeping…his breathing is steady…
It’s surgery day and I’ll never be ready.
It’s handing him over…( I’m still not prepared…)
It’s knowing that his heart must be repaired…
It’s waiting for news on that long stressful day…
It’s …praying…it’s hoping…that he’ll be okay.
It’s the wonderful friends with whom I’ve connected…
It’s the bond that we share…it was so unexpected…
It’s that long faded scar down my child’s small chest…
It’s touching it gently and knowing we’re blessed…
It’s watching him chasing a small butterfly…
It’s the moment I realized I’ve stopped asking why?
It’s the snowflakes that fall on a cold winter’s day…
(They remind me of those who aren’t with us today)
It’s a brave little boy who loved Thomas the train…
Or a special heart bear…or a frog in the rain….
It’s the need to remember we’re all in this plight….
It’s their lives that remind us we still need to fight!
It’s in pushing ahead amidst every sorrow…
It is finding the strength to have hope for tomorrow.




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When I read this poem on another CHD blog, I realized as my eyes scanned the words something I had yet to take note of .  I don't know when, can' t put my finger on it, I have no date to attribute it to, no special mark on the calendar, but somewhere along the way.... I finally stopped asking why.  
Those words hit home and they hit me hard and I quickly pulled up my blog to write, because writing saves me.  


I stopped asking why.  


Which means I have found acceptance.


 For all the things in my life that I am having trouble accepting at this very moment, I have found acceptance in the fact that I have a very, very sick son.  Does that mean I don't cry at the drop of a hat? Oh' no.  I still melt with the best of them. I still throw tantrums better than a room full of toddlers. I still lay in bed at night praying with all that I have for my baby boy, but I am no longer mad about it. I no longer ask why through the sobs.  
It is...what it is and I have come to terms with that. 
It's wildly freeing.  

It's pretty amazing to stand in the midst of total chaos and accept it.  I remember taking Paxton to the emergency room this last time.  I sat on the bed with him with two of the most understanding people by my side. One who was speechless, the other fighting for me with all of her being.  I just sat there holding my boy.  Doing what I had to do while he screamed. "Tough as nails" one of them said about my presence that night.  That's not to say that by the time we finally got admitted at 4 am to his room that I didn't go off on some a-hole doctor like a sailor just off ship. No, I don't always have it together, but holy crap do I have it together for him when I need to.  It's actually a state of mind I can't really describe and not one I can say I have ever experienced before Paxton. It is like my body is there for him, but my mind goes on auto pilot so as not to feel to much, hurt to much, so I can be for him what he needs me to be in the moment.  It's almost an out of body experience as I think back on that night, on the many nights where my body had to pull it together in the most frightening of situations.  It has never let me down and I find that pretty miraculous.  

 I no longer ask why...I am part of a club I never imagined I would be and while we have all spent a great deal of time trying to find the answers, we all at some point, maybe without even realizing that we have, come to accept that there are no answers.  

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I ran a race this weekend. A 5 miler, hill run in the rain and I rocked it! Ran 41:20. I was so proud. I felt so amazing after I was finished and all I ever want is that high back that I get when I am out there pounding the pavement or throwing medicine balls at x's on the wall in crossfit.  My Dad was so proud. He gets it.  He gets the need for the high. The need to run it away.  
The high that heals, least that's what it is for me anyway.  


My heart can be so high one moment and so low the next.  Life continues on around all of us. More HLHS/CHD babies are born every day and every day I mourn for them and pray for them and hope for them.  There are ones so near and dear to my heart (Kian) and others I only know through friends (Ewan, Parker and many more)  it fills me up and hurts and leaves me feeling helpless.  I realize this is a journey that will not end. The suffering will always be there, but so too will the glory, the victory. For some of us anyway and as we all trudge this journey we each cope in our own ways.  We do what we can. We cry. We get angry sometimes, but mostly we just... are.  We find ways to carry on, to try and be as normal as seemingly possible. Some of us (me) have to step back from the social network at times in order to stay focused and not look to far down a road that is inevitably not in our control anyway. One persons journey does not mean that it will be mine as well, but it's hard not to compare. So I run.  I squat. I throw medicine balls at walls. I lift weights. I jump rope. I sweat. I breathe deeper than I ever have. I close my eyes and let oxygen permeate every cell in my body. The same body that at times feels like it's been deprived of oxygen and the ability to breathe since I was 33 weeks pregnant and saw the ultrasound tech's face.  The same body that has lost more sleep than any person should. The same body that spends every single day bargaining with God for her sons life.  The same body that runs to his room if he sleeps to long. This 31 year old body that feels 61.  But, I don't ask why anymore. Instead, I just do.  As every single one of us HLHS moms do. 
 We just are. We just will. We just do. 


This journey will continue on with or without us so we man up and take the highs with the lows. Lean on each other when we can and melt with every smile our miracle babies give us because surely if they can muster through with such grace, so too can we.  
If the holidays don't bring clarity to our situations I don't know what does, because some, many in fact, will not have their babies here with them and my heart is raw for them, because dammit it could have just as easily been me.  I don't know how He chooses. I used to question that too, but I don't anymore.  There are no answers for that either.  I just find a gratitude so deep and thick that he is here. I try not to feel guilty about it.  Try not to over analyze when really in truth, analyzing has become a full time job for me. So I just keep moving and swimming (for those of you who know Nemo) 


"Just keep swimming swimming swimming" 

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The new year is just upon us and I have something in the works.  Someday I will share what that is, it's pretty cool so stay tuned.  
For now, I will leave you with these: 





Oh my gorgeous babies! How did I ever get so lucky! Some days I seriously think...what else is there... 
Man, they hurt so good! 

Love
~J

4 comments:

The Simmons Family said...

You are totally not too skinny.. I am so jealous that you have the motivation and drive to take care of yourself. You should be proud!

I on the other hand am on the opposite end of the spectrum and it's hard for me to eat clean and exercise daily. But ya know what.. I love me anyway! That's all that matters.

We love ourselves. We love our babes. We live like there's no tomorrow. That was life is all about.

That poem is one of my favorites!

cici said...

Your baby boys are the sweetest and so are you.
I wish you Peace of mind, Rest and a healthy Holiday Season and New Year.
{{{Big Hug}}}}

Neha said...

Your children are very adorable and precious and will give you many more reasons to smile.

Take care and have fun holidays!

Lorena M said...

Through it all you smile, you smile so big for your babies. I will always be amazed at how you do it, how you stay strong and you are there and manage to do so much even when you are away at the hospital. I think you are an amazing mom, and every night I pray for Paxton whether he is in the hospital or home happy I still pray and I pray for you because without you Paxton wouldn't be such a happy baby, I love his smile I know you tease about him having your "big mouth" as you've said, but I think he looks so cute with such a big smile! Your boys are all getting so much bigger and I have to say very handsome you are gonna be in trouble when they are teens. Love and many prayers from California!

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