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

3 comments:

Team Carter Jay said...

I haven't checked out your blog in quite awhile, so after reading about Pax and the upcoming appointment I just wanted to let you know that I will be praying for you and for him <3

Neha said...

I love the way you keep hope alive. The lessons you shared are incredible.

And the pictures are precious. Hope the Friday brings in good news for Pax. He is a hero and an angel!

cici said...

Oh sweet girl, I know you are running on high adrenaline which makes sleep virtually impossible to sleep. I have been there many times. I hope the Cardiologist can ease some of your fears on Friday,so you can take a much needed deep deep breath and get a super good nights sleep.
Paxton is still doing better than 90% of HLHS babies You are doing an amazing job, just don't forget to take care of his mama for him ;)

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