Tuesday, April 26, 2011

A little of this and a lot of that...

I haven't slept in light years.  I actually think you can see the sheer exhaustion in my eyes in the picture below.  There is so much that races through my mind twenty four hours a day that not even sleeping pills will help.  Yep, I have resorted to the big guns mainly to try and help prevent the migraines that seem to creep up on me nearly daily and had me in the hospital twice last month.  It is said that stress and lack of sleep amongst other things trigger them and both of those stressors are forefront in my life.  I went to a neurologist to discuss "options".  We decided that since I clearly can't get rid of the stress in my life that we would at least try to get this Mama some sleep, but to no avail  Nothing and I mean nothing is working.  In fact I am not sure what a good nights sleep feels like anymore.  Case in point below:
Pax is on oxygen.  He suddenly has this inability to regulate his body temperature.  He is consistantly blue and panting.  His heart is showing me signs of struggle.  I am to say the least freaking the frig out.  He has a cardio appointment Friday and I am dying to get there and dreading it all at the same time.  I need answers and yet I am terrified of them.  Oh dear lord my baby boy.  I can't even breathe typing this.  


There is nothing I can do to change the outcome of that appointment. I know this.  I have done quite amazing in the past year and a half of letting him live. Of handing it over, but damn if seeing the changes in him doesn't walk me to the edge.

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I spend a lot of time during the day trying to figure out what to write on this blog. Just yesterday I got an email from a new HLHS mom who shared her story with me and I realized yet again how much just laying it out there helps.  Part of me wants to say this is easier than you think, it gets better, it doesn't affect your life, your marriage, your hopes, your future. But the truth is, it does. HLHS changes everything. When you walk in Paxtons nursery there's a huge oxygen machine right there, when you open his cabinet there's meds, syringes, pulse ox monitors, stethoscopes and nasal cannulas.  It's Pax. It's all I know.  The entire family was over for Easter yesterday and in the middle of it I am breaking out his pulse ox to see what his O2 sats are, then throwing on his nasal cannula on like it's second nature.  I could see out of the corner of my eyes that some of them staring, but I kept my focus and when all was said and done, I took a deep breath knowing I controlled all that I can control and the rest wasn't up to me.  With shaky hands I ate a small plate of food never taking my eyes off of him. It's crazy right.  Yet its normal to me.  I don't why, I just know that I know how.  I can't question it any further...
 If  I have learned anything this past year, its that you gotta roll with the punches. Take it where you can get it. Try not to question to much and love with all of your heart.  I am getting pretty darn good at that.

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 I learned yesterday that heaven has gained another HLHS angel.  I will never understand and right here is where I have to stop myself from questioning and roll with the punches.  Tomorrow it could be Paxton... there are simply no guarantees.  I sit here tonight in my big red chair hurting for those that have had to say good bye and grateful beyond measure because my journey could and can take a different road at any time.
My baby boy has taught me so freaking much.  The person I was before him is so different than the person I am now.  I take risks because who knows if we have tomorrow. I  love harder than I ever have and let those people know that.  I hope more than I ever have, I hope for the future and all of the things we can't control. I never give up that...maybe...just maybe someday I and others will see that there is always hope. That things happen for a reason and sometimes you just have to trust in that.  It's not a lesson I had learned before Paxton, yet I searched and searched for a reason as to why...why... and I finally learned there isn't one.

So I fly by the seat of my pants more, sing and dance truly as "if no one is watching", love harder, hope deeper, try to say how I feel even if I am not sure I should....

It' a learning process ya know.  What I do know is that things happen for a reason. Some people question that, I do not. I believe that everything happens for a reason and Paxton was given to me for a reason just as Austin and Mason were.  I have learned just as much from them as Pax, maybe not in as profound ways or ways that drove me to the edge, but I have learned alright.

This post has been a wicked rambling one, but sometimes that does a girl good eh?  Summer is just around the bend and I anticipate big changes and lots of fun...

In the mean time lemme share with you a few pics from this past holiday weekend....

The first few are of me and "the gang". Morgan is the 21 st birthday girl. Morgs has been a part of our lives since Austin was born. In fact she was the first "babysitter" we ever had and let me tell you as a first time mom that is saying something.  He's not my "golden boy" for nothing.  Nearly five (yes five) years later "Morgs, Morgie, Morgan" has become a part of our family. I wouldn't dare call her a babysitter. She's more like my sister or "my person" for those who watch Greys anatomy.  Morgan was there the day Mason was born, first visitor actually.  I called Morgs the day I lost Tadem from my hospital bed in the ICU and together we cried.  Morgan is who I text or talk to when Mason and I are in the ER for RSV at 1 am.  Or who comes and stays with me in the hospital when Pax has a UTI. She was there when his g tube was pulled. Best of all she happens to be as infatuated with McDonalds diet cokes as I do.   There is and always has been this calming presence about her.  If anything affected her at all I wouldn't know until I got a private fb message from her.... she, like me, is better off just writing about it.
p.s. I think it's high time for one of the messages I was talking about don't you Morgan...just sayin ; )

In anyyyy case, this Easter was her 21st birthday. Epic right.  So we loaded up on the boat and went to a little island called Key Wayden and partied like there was tomorrow, truly like there was no tomorrow.   Sunday rolled around and I wanted to do it all over again.... it was that good people!!!!




We started at 11 am and lasted on the beach, in the hot sun until 7 pm so as you can imagine, these are the before pics. Truly though, don't we all deserve a kick ass weekend to freak our freaks.  Happy birthday my "Morgs"!  I never knew what an intricate part of our lives you would become that first day, but damn if I don't love you so much.  One day the tables will turn and I will watch your babies!

Easter was awesome. My boys love a par-tay and a par-tay was what we had!


( Ma Ma and her oldest born)


(Sissy and I)

 (Everyone thought it was funny to see me stuffing face with my Aunt Joannes potatoes! OMG, delish!)

 (Austins first catch ever, epic for him!!!)


(Mae checking out Austins catch of the day)


(Mama and Paxie)


(Nana and Pax)


 ( My brother/Uncle Adam with the boys finding their baskets)


(Pa Paw and Pax)

(Morning Easter egg hunt)



"Sometimes people come into your lives and quickly go. Some stay awhile and leave footprints on our hearts and we are never, ever the same."

I have a big girls night out tomorrow to go see Usher and Akon in concert.  This should insanely fun and interesting to say the least.   That said I will update Friday after we get back from Tampa for cardiology.


Night all~
J

Friday, April 22, 2011

Everyone has their outlet, their way of coping.  Mine happens to be running.  I cannot do that right now, haven't been able to for two weeks, had to skip out on a big race because my knee is in a bad way. To date I have had a cortisone shot and an MRI.  The truth is, I am pissed.  I am angry.  Running has saved me.  Healed me in so many ways.  Ways I didn't think I could be healed.  I am far from better after what I have seen this past year there is just no way to be ok just yet. In fact, I may never be ok.  My son is sick and that's the bottom line.  I carry this weight around with me every day.  So the only way to release some of that is to run.  I am done, for now anyway. Surgery more than likely looms in my future.  Chicago is still in question come October. I am angry. Because dammit I need it.  I need running like I need oxygen.  It's just the truth. When my world is crumbling around me, I throw on my shoes, my headphones and run like the freaking wind.  Oh' it feels so good.  My body feels so free.  I need to run right this very minute so badly I can't see straight and I can't.  The hot tears pouring down my face in anger and sadness.  I'm just sad tonight.  I just want one thing to  be easy right now.  Let me have this one thing. Is that so much to ask... I have paid my damn dues.
So here I am heartbroken and sad and like I have done so many times in the past I come to my keyboard for solace.  I can't find it in the pavement right now, so my keyboard will have to suffice.  This keyboard that holds so many of my tears.  This stupid keyboard has been there for me more than any human being ever has.  I like it. It won't hurt me. It has never let me down. I always feel better after I spend some time here.
Paxton is walking now.  He is proud and I am glowing.  I am however, scared.  To death.  He turns purple at least once a day now and I mean purple!  He cannot regulate his body temperature. He pants like a rabid dog when just throwing a ball.  His heart is tired. I am his Mommy and I can see the change. Surgery looms in his future too and it's going to be sooner rather than later.  I can't breathe when I think about it.  Can't put him down. I just left his room where I snatched him out of bed, laid him on my chest and rocked him.  I sobbed.  Sobbed that I can't fix this for him. Sobbed at the unfreakingfairness of life.

Some days, tonight being one of them, I wonder just how much one person can take before they snap.  Like I kinda want to snap right now. Just roll around on the floor like a toddler and kick and scream and cry.  Why.  Why me. Why us.  Life as I knew it is over and that's ok because I have him to show for it, but good God if I haven't changed in so many amazing ways and yet some not so good.  It's just the truth.  "Wounded war veteran" that's what I have been told I am and when I look into the eyes of my best friend CC who has traveled this same damn road, I see a wounded war veteran and I always seem surprised when I realize I am looking at myself.  I am like a vault now. Keep it all tucked inside.  Don't stop moving so you don't have to think.  Go through the motions without ever skipping a beat and yet I am broken inside.  Truly. You just don't go through this and come out whole.
My glass is always half full, but damn if I don't have some bad days here and there.  When the one thing that keeps me sane is taken away I falter.  I have nothing, but this damn computer.  Like here where I had nothing but a computer to get me through, I did what I had to do. Just as I will tomorrow. Tonight I will cry endless tears for all that is, for all that might have been, for all that I would change.  My heart hurts for so many things right now, but I will make it.  I always do.

"For all that has been~thanks! For all that will be~YES!"
Oprah


For all that has been, I am thankful, even the parts I think I would rather not have had to endure. They have taught me oh' so much and really though isn't it better to hurt and feel something than to feel nothing at all.  I don't know why God keeps testing me.  I just know that no matter what I will make it.  Sad, hurt, broken yah' maybe.  But tomorrow is a new day and I will pull my damn boot straps up and keep on keepin on.  It's all I know to do. It's all I have ever done.  When I feel alone, I will come to this keyboard. When I feel helpless, I will think of all that I have done. When I feel heartbroken, I will concentrate on healing.

"Anything worth having is worth fighting for..."


What I want to fight for is happiness, a life lived to the fullest, to love with all of my heart, to let go of it all and just be.  And with that will come peace and freedom.  No one can make us happy, but ourselves and while I have a long way to go on this journey, I will keep trudging.  I will keep trying. I will keep being who I know to be and whatever comes with that will just be an added bonus.

Life ain't always beautiful, but its a beautiful ride.... and that is so damn true.

G night friends... I will check back in on Easter when a new day has sprung and with it the old Jenn will be back in business...

Love
~J

Tuesday, April 12, 2011

Special Needs Glasses

Why hello there!  Betcha you weren't expecting a post since its been... oh' I dunno~ forever!  I stopped writing for quite some time. I would try and I just didn't have it in me. Then the other day I received the most amazing email from a blog reader.  He inspired me to get back on the horse. That it matters. That someone is reading.
So here I am friends!

This Dad has been my buddy for awhile now.  I am not sure how he stumbled upon my blog, but he did and wrote to tell me about his special needs son in which I wrote about here.  Holy cow what a year can do! It never ceases to amaze me.  Today Tapp is doing well and happens to be insanely gorgeous.  Will he have his struggles? Yes he will, just as Paxton will. Will we as their parents have ours?  Yes we will and yet there is something comforting in the fact that as alone as we all can feel at times, there are people all over going through similar things.  As I sat at a stop light reading his email tears welled up in my eyes because it had been nearly a year and for each of us probably a lifetime of change in one small little human being.  In my reply I spoke of how life changes when you are given a baby with special needs and oh' does it...


It gets harder and better all at the same time.  Worry lines every cell of your body and yet you are given these "special needs glasses"  the minute they arrive.  These glasses that allow you to see everything for what it is.  In spite of the fear there is the ability to see the fragility of life and the beauty of it in richer, deeper ways than ever before.  As I wrote to Matt, some days those glasses fog over and the clarity fades, but they always clear and when they do the itty bitty moments are all the more joyous.
I spend a great deal of time trying to teach myself to not let the worries of tomorrow overshadow today and that is hard to do when you take your boy in the pool and have to rush him to a warm bath because he turns blue even though its 90 degrees out.  And as I did that the glasses fogged and instantly I wondered if I would be loading up to head for the hospital. It is always the first thought in my head when anything is off with Pax, but he rallied and so too did I.  My glasses cleared and I let him be a "typical" child which means crawling around on the patio getting dirty and dripping ice cream cone all over his gorgeous face and down his shirt.  As much as I want to keep him in a bubble, I also want him to live and when I see the smiles that consume his face when he gets a chance at freedom I find I let the leash go just a little more because in the end my friends, god forbid something should happen to him, I would want to know the time he had here was amazing and fun and free. He is pent up enough each time he goes to the hospital I do not want to confine him anymore than that.  I want him to swim and run and be all crazy with his brothers.

So those of us who wear those "special needs glasses" are pretty amazing because we have taken the gift handed to us and learned from and shared it with others in hopes that all of us someday will wear the glasses that allow us to see how amazing life can be not just in the big moments, but in the small ones too.




(love the tongue of concentration)


There is such a depth to loving a child that words cannot describe, but never knowing how long you have that changes everything.

So dear Matt and all of my other peeps that walk this journey along side me:
together let's rock our glasses because damn if we aren't all the more stronger and wiser wearing them!

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So we have been busy roundtheseparts ; )  The boys are growing like dang weeds. They're turning into sassy wannabe teenagers, outsmarting me and crap if they aren't adorable whilst doing it.  S'ok!  They don't call them Mamas boys for nothing.




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I have been racing pretty often and nothing makes me feel better in this life than a kick a*# run.  I am signed up for my first full marathon (26.2 miles! Straight up crazy I know) in Chicago on October 9th, 2011 which happens to be my heros 2nd birthday.  Swear to God I will cross that finish line somehow, someway people.  For him, he who was has been in more pain than we can imagine. Oh' I can't even freaking wait.




  
(mud pits beyond mud pits and I loved every minute of it)




(My Fan Club! I can feel the enthusiasm : )



(My best friend Charity and I.  Her son Asher has HLHS too and running very literally saves us. Together we ran a 1:54 half!)



My dad is a cross country/track coach at a local high school here. Has been since I was a wee one. Guess that explains my mad addiction to running.  I ran for him in high school and following in my footsteps are my sister and brother.  Last month (yah I know way behind here) Dad held his yearly cross country banquet to award all of the kids for their hard work.  In addition to the 3 awards he has been giving out for years, he decided to add one this year 

(kleenex please)




Sommer is my maiden name which in turn means my sister and brother received this award on its first year.  Dad cried while giving the speech as did my sister and I.  Then I gave a speech and as I looked out over the parents and runners all I saw were tears.  Real, genuine tears for his struggle and it meant the world to me.



And I glowed with pride that he was mine, my Dad cracked jokes and my sister wiped her tears. It was glorious...


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Well, I suppose it's time for me to turn in now.  Never never land is one of my favorite places to be.  I love that place in between awake and deep sleep. Where at times the body jerks reminding you of where you are and where you are headed.  The quiet of the room with nothing but the purifier to lull you, the soft, sweet smell of sheets, the cool side of the pillow and these guys who are the cherry to my sundae!





Sweet dreams
~J

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