Monday, December 27, 2010

What is it about the holidays that makes one so sentimental....

My mind wanders about trying to piece it all together...this whole entire year and all of it's chapters.  They seem like only yesterday and yet a lifetime ago all at the same time.  As always, I begin to wonder what a year will bring.  I wonder where life will have lead us 365 days from now.

I thought back to last year around this time.  How I was filled with terror every day having just brought our son home, the son who had just had open heart surgery, the son who was housebound from people and germs. The son who was still such a blue baby. Still so critical. Still on a heart monitor 24 hours a day. The son who still had a feeding tube coming out of his belly.  The son who had his formula fattened in order to gain weight. The son who was not allowed to cry for more than 5 minutes.  Oh' the fear that filled me to the brim.  The dread that I had getting in the car to go anywhere for fear he would start to cry and I would have to pull over and hope that my soothing would help. The trips to Tampa that took 4 hours because I would have to stop any time he woke.  Or pull over on the side of the highway alone and have road rangers stop to see that we were ok, then follow us the rest of the way should I need anything.  The never ending sleepless nights because his monitor would go off for no reason, leading me to jump out of bed and literally fly, feet barely touching the floor, to his cradle fearing what I would find.
 
I never, ever thought I would make it to today. The day where I would be able to sit here and say it's ok. It's going to be ok.  I have accepted that he's my blue boy. I have accepted that my days include drawing up meds, constant assessment of him that I am now able to do with my eyes instead of a monitor.  I was dependant on that damn thing, I never imagined I'd be able to do it on sight alone and yet I can tell a change in him instantly, the moment I walk in the room.  Somewhere along the way the fear began to settle and our new normal became...well, normal.

Don't get me wrong I wonder about his future constantly.  I pray he gets to grow old. Pray he doesn't need a heart transplant. Will fully admit I have my meltdowns with the very best of them!  Lay in bed sobbing out of fear, but man if I didn't stop to realize this holiday season that I have come soooo freaking far in one year. I am wicked strong. "Iron clad",  as a friend said.  I have become so much more independent. So much more confident in my ability to handle whatever is thrown at me because damn if spending two months alone in a hospital with zero control over anything doesn't make you stronger I don't know what does.
Acceptance has found its way to me and my boys continue to thrive and grow here at home.  3 little, amazing boys who have endured far more than they should have to in a years time.  They have risen above it all, as kids do.  I like to think it's in their blood. You know, the kicking ass taking names gene! Or maybe it's not in their blood and they have shown me.  Either way, one year brings infinite possibilities.
Bring it 2011!

Yup, the holidays make me so sentimental. I have always been "tagged" as sensitive, but now... now I am so much more introspective.  So much more appreciative for life and what it stands for. So much more conscious of how fragile it really is as well.  I find myself trying not to smother my boys in hugs and kisses. I literally could hug and kiss them all day.  I am just. so. grateful. for them.

Watching them light up seeing Christmas lights or hearing them sing "shingle bells" and tell the neighbors "happy hollwydays!" Oh it melts me to pieces.
I was driving to my family's house and I kept thinking of Christmas without my kids. That having them makes it!  Brings back memories and traditions and all of the things I want to do with my boys. I want them to have those memories.

I have pictures! Oh yes, I do, but right now I am fighting a nasty migraine so I am going to head off to never never land.  I just wanted to check in and say it rocked! The smiles, the squeals, the snuggles; they so rocked and I fell more in love.

I'll be back soon with pictures of my boo's. Until then I'll leave you with a lil reminder of how utterly gorgeous they are. I get that I am biased, but really you gotta admit ; )







Love
~J

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.




****************************

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.  

*************************
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" 

**************************  
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

Thursday, December 16, 2010

It's Beginning To Look A Lot Like Christmas...

Oh yes it is.  The boys totally "get" it and it is SO much fun! Oh' it is so great to be home, going to Christmas parties with my boo's and getting haircuts and making them breakfast.  I love it!  I appreciate it. I relish it because I never know when I will have to jump ship again.

We decorated the tree.  A really, really big one. Like some 10 feet that the boys picked out and thankfully our ceilings are able to accommodate it. The front door. Not so much. After a few lost branches we made er' work though.




We fought over ornaments, investigated and laughed big belly laughs...



We snuggled and hung, snuggled and hung...

 (Holy tired Mommy just home from a week in the hospital batman. Little did I know here I would be going back for another week the next day.)


(oh you gorgeous thang you)

When all was said and done we sat back and admired...


(i phone pic)

Erh... or borrowed Mommy's camera and took photography into our own hands (thank you Austin, quite impressive)


  (Maybe had a snack of peanut butter on a spoon in the buff, naturally.)

(in typical jenn fashion with the vacuum in hand)

We went to holiday performances where my boy merely stood on the stand looking for me, finger in mouth instead of participating. What can I say, our obsession with each other runs deep.



(Crappy pics, I know, but I was like a mile away, guess I know what to ask Santa for ; )

Pax watched on with brotherly pride flowing out of every pore. Clapping and dancing. What he wouldn't have given to crawl right up on that stage!



They made Mommy's favorite white chocolate covered pretzels with Nana while she was off to the doctor.





Pax helped by tearing apart the tupperware cabinet and crawling with one in his hand thus smearing it from one end of the house to the other. So long as he enjoyed it, which he did, it's all good with me.


Tonight we went Christmas shopping and filled the car with goodies for little boys who have had one hell of a year and deserve a extra "specials" from Santa.  As pictured below, our bumper was draggin a smidge ; )


And I continue to glow in the love my boys continue to give me day in and day out.  Oh' how they fill me up. Like Mason announcing when I walked into his class party today "that's my Mommy friends, I wuv her, say hi!" My cup runneth over to say the least.  He was SO proud of me and it was in that moment of clarity that I was reminded that they are what it's all about. What I am all about and that is so freaking awesome!


Yep. It's beginning to look a lot like Christmas around here.  Oh' their faces come Christmas morning.
Yet, at 3 and 4 they actually know the meaning of that morning. If you ask them, they will tell you "it is Jesus' birthday Mommy."  For that I am proud. 
Proud when Masons teacher says to me "it is so obvious how much he is loved."  
My mission in this life is complete. My boys know they are loved beyond measure and radiate it. Even through the separation, they know.  Come hell or high water, they will always know. 

Merry Almost Christmas Friends.  It's gonna be a good one!

Love
~J


Tuesday, December 14, 2010

Well Hello There

I know, I know, it's been far to long.  We all remain at home and doing well. I have been spending a whole heck of a lot of time trying to catch up on life.  There was/is a lot to be done especially with the holidays just around the corner.

Gahhh! My list keeps getting longer and longer instead of shorter, but I push on.  Cause I am good like that ; )

As you can see, ole bloggie has gotten a much needed face lift and I love, LOVE, LOVE it! My girl over at Once Upon A Blog did the surgery and as always I gave her free reign and as always she was right on target for what I was looking for. Thank you Jennisa!

So, in other news the tree is decorated and gorgeous I might add, mostly because it has all of our previous years christmas cards adorned from it as well as all the boys ones that they made me from school.  I love to unpack those boxes every year and see how big they have gotten!  It really is incredible.

And I have some great pics to share only my camera is giving me the runaround so I am attempting to fix those technical difficulties now.

In the mean time I just wanted to check in and say, "what up to all my peeps, let you know that we are doing awesome and thriving here at home. Can i get a woo hoo on that one please!" Life has returned to normal and girlfriend is so thankful!

I will get you some pics up soon, cause my boys, they're like weeds I tell ya, growing and changing every day.

Love
~J

Wednesday, December 8, 2010

To All My Peeps

We are home. Having been gone for two weeks, there has been a lot to catch up on.  I am finally able to sit down and write a quick post.  I am beyond grateful to be back to everyday life.  Those days in the hospital where time seems eternal make a person appreciate the every day little things all the more.

I have a lot of shout out's to throw out there, like people that rise to the occassions and help my family and I, when at the drop of hat, we have to leave for the hospital.  I could list off names for five minutes, but you know who you are. My chauffers, nannies, errand runners, sleep catcher uppers, clothes bringing, eye roller, diet coke getting,  baby boy loving, spirit lifting peeps! Even my blog readers near and far that either leave comments or send me personal emails, thank you!  You'll never know how much hearing from you makes my day.

And I am grateful for my baby boy who always keeps me grounded.  Who always reminds me that while this is surely going to be a long road, it is so worth the fight.

I plan to write more, but for now, for tonight, girlfriends gotta sleep.  I am still not quite caught up on the lack of sleep those two weeks brought me and the stress no doubt took it's toll on my body. I am getting there, slowly, day by day and each day Pax remains stable is another day I breathe a sigh of relief.

Night night termites!  Sweet, sweet dreams, you all know the love affair I have with never, never land...

Love
~J

Friday, December 3, 2010

Today

I am sitting in the dark at RMH while Pax sleeps in the pack n play. It's been two weeks here at the hospital.  I won't lie, today I am dragging serious a*#.  I wonder how much the heart can take. How much tugging and pulling, waxing and waning, highs and lows, full up of loneliness can one take...

I want the loneliness to end, but somehow when all you do is step outside to get a diet coke and return to the hospital life you feel alone, because outside, out there, are all kinds of people going about their lives. Perhaps preparing for Christmas or meeting a friend for lunch or falling in love. Then there's me, walking the same walk I have walked oh' so many friggin times back to the electric doors that open with my visitor pass key card to let me into a place I would gladly freaking give that key back to.

Only this is normal... This is going about my life and it's lonely.  I want to be Christmas shopping or romping around in the backyard with my boys. I want to not sit in the dark and feel so alone on this journey.  The only thing that softens it all is when I stop typing to hear the in and out breathy sounds of my boys breathing.
He softens everything.
Especially me.
The way he lights up when I walk in a room or sit up  in bed would melt your heart instantly. We should all be so lucky to have such a gorgeous man think we are that awesome!
And so I continue to wax and wane, ebb and flow.
I continue on because I don't have a choice nor do I want to.  And just as hard as hospital life, making the shift from that to everyday home life will have it's ebbs and flows too. It's hard to instantly make that switch, but we will and we will make it.
Am I a little rough around the edges from all this, sure.  Do I snap a little sooner, yup!  Does my patience dwindle, for sure. I have no room for excuses and what not's living here. This is real, important life and when I hear, see or find someone that doesn't realize the importance of that I get snippy.  Then just as easily, I melt, sob and cry. Cry for those people that just don't get it. Cry for getting snippy. Cry for my son. Cry for my other two boys. Cry for this journey that I hate and love all at the same time.
I loaded my car up with oxygen tanks today and I stood in the parking garage in flip flops in the freezing cold because I was unprepared to be here through cold front, staring at my life in the trunk.  THIS is the life I was meant to have and while there are days, much like today, where I wish being busy at work was my biggest complaint, I know that this is what it's all about.  Seeing this little boy make it and rock it and do it all with iv's in his body and oxygen on his nose is what it's all about.
How dare any of us complain...
I am blessed. Blessed because life saw me fit to take care of him and I am honored to do it, even on the days that have me trudging the beaten, worn path I have walked so many hundreds of times before.

Love
~J

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