Sunday, February 19, 2012

A Cup Runneth Over....

So I just finished watching the movie 50/50.  It spoke volumes to me.  It reminded me that everyone is fighting their own battles.  That everyone has their story.  Are some better than others? Absolutely. Some come without any sort of understanding.  Others, teach us more than we could ever imagine. This past week was a tough one mainly in that Paxton has been out of the hospital cardiac wise for quite awhile now.  Last Thursday was the first step in the next leg of this journey.  The journey I have been dreading for far to long.  The journey though, that is coming whether I want it to or not.

We made it through his heart cath


and are now preparing our minds and hearts for March.  March is going to be Paxtons third open heart surgery.  As I watched 50/50 tonight with tears streaming my face, I found myself contemplating what would be worse.  I suppose any illness, whatever it may be, is tragic in its own right.  I try to tell myself I am prepared for this.  That 2 1/2 years and two open heart surgeries later, has prepared me to walk this road again.  Then I realize that no matter how many times a person goes through this there never really is preparation, only knowledge gained from the previous time.  All I know is I am madly in love with that little boy, more than I ever knew possible.  I describe the love I had for him as a newborn and then I try and describe the love I have for him now as he has grown older and there just aren't words.  The things he has had to endure and endures with a smile in the end never, and I mean never ceases to amaze me.

this past thursday~smiling just hours after his heart cath, just hours after the pic above...my hero.

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

That said, I have to give a big, massive thank you to all of Paxton's prayer warriors. I am reminded over and over how not alone we are  on this journey.  While it may feel like no one can understand, and maybe they actually can't, but they try and isn't that all that matters.  Like when I am sitting in pre-op waiting, just waiting and I get a text reminding me to "breathe", cause sometimes I need someone to remind to do just that.  Or a picture of my other two boys happy and doing well because that heals a mommy heart when nothing else can.  Or a friend asking if I have eaten lunch.  All things that are kind of important, but hugely unimportant when your baby is under anesthesia.
Then there are those who take my baby under their wing and would literally take his place if they could. We had multiple schools wearing red for him on Fridays. We had students and families wearing red, bringing in red bracelets, pins, students drawing pictures, making banners for his room, cards and emails flowing in.  Friends and family pulling the red from the backs of their closets. Friends offering to drop everything to be there for me/with me. To care for my boys, to take my boys.   Oh' it warmed my heart. The tears flowed on many occasions.





It's hard for me right now. I don't like being the center of attention. I don't like attention drawn to what is clearly defining our life right now, but I also feel that for those who are so in love with the awesome baby that is Pax, I owe you all updates and thank you's and pictures. I also owe him and others fighting this fight my words, the truth. I don't talk about it well. I keep it short and sweet if you ask me.  If you read my writings, its a whole other story (pun intended)  and part of the writing is my therapy.  I have said on several occasions that sometimes "thank you is never enough" and sometimes I feel like thank you just isn't enough to all of you who reach out to our family during this incredibly scary and tense time, but thank you is what we will say over and over.

It is my hope that you all know that each and every card, email, text, note, gift, facebook comment or act of kindness means the absolute world to us.  The WORLD.   It would be really easy, especially for me the tends to by shy me, to hole up in my house here and not reach out in the hard times, but I try. I try for Paxton and my other two boys and you all have never let me down.  We have lots of new friends among us whether it be through the boys new preschool First Presbyterian, through Neapolitan Special Needs Magazine or some others who seem to have found their way through friends or an HLHS search.  Thank you for joining us.  It's been one hell of a ride but I remind myself and all of you to read this:


This was inscribed in one of the rocks surrounding the fireplace at one of the old hotels I visited while in Asheville. I walked right up to it as if it had called my name....

If I have learned anything from this completely unplanned journey that I can share with you tonight it is this my friends:   you can either fight it or you can jump on board. Either way, the journey will continue you on with or without you... I chose to jump on board.

Those of you that have been reading for awhile have heard me say that before, those that are new can ponder it.  Don't get me wrong, there are some days I am like a two year old toddler tantruming at the unfairness, but once I get it all out, I pick myself up and carry on.  It's how we choose to handle the journey in the end that really matters.

I received a comment here on the blog the other day that I would like to make note of. It is from a long time, religious follower and commenter, CiCi.  She leaves me a comment every single time she reads as do others, but this one really stole my heart:


Hugs and more hugs to my dynamic duo! The sun came out full force today in California and I 
thought of you and your little man ALL DAY! :)

It was the "dynamic duo" comment that got me.  Pax and I have been to hell and back, mostly him, but me sitting there helpless sure felt like hell and the two of us together always come out of it together so to come home to those two words really lifted me up. Thank you CiCi from California for the many, many comments all this time!

Pax and I are quite the "dynamic duo" if I may say so myself!



With all of the love that is being shown to my boy via pictures, cards, banners and the like I have really been trying to think of a creative way to display them all. A memory box wasn't to my liking because I wanted him to see daily how much he inspired people, especially as he gets older and begins to understand his special needs.  So I decided to make the one wall in his room a memory wall.  I have begun gluing all of the little pictures, notes, cards, emails, letters, essays and well... anything that has to do with Paxton and his journey to the wall and before long I just know that entire wall will be filled with all of the people he has touched.  What better way for him to see every single day that his fight is not in vain.  I started it this weekend and while I have a lot more hanging to do, I would say we have a good start going. Pictures in my opinion don't do it justice just yet, but it will get there.  Oh, to hang each and every little precious memento filled my heart to the very brim. I hope that one day down the road it will mean as much to him as it does to me.



 I hope that one day down the road my older two boys will understand and appreciate their younger brother and his journey. It's hard for me as a mommy because I feel guilty that Paxton requires so much attention right now and I fight to spread what's left to them so very equally.  I love them all so incredibly much and so very much the same that I hope and pray Paxton's illness never makes the older boys feel otherwise.  It's a delicate balance being a Mommy and I can only do what I know how to do and that is love them each with all that I have and trust that the rest will come.  And I do trust that the rest will come!

Thank you all again!  From the bottom of my heart, thank you.

Love and hugs~
J

4 comments:

Amy Bennett said...

Oh man, the Fontan is SO close. I know how scared you are, because we're likely not far behind you. I"m seeing the blue lips, and hearing the windedness, too. :-( But we now our boys will be stronger, better, bigger boys on the other side of this surgery. PRAYING for Pax - and for you, mama. Many, many, many heart hugs...

The mom of 4 monkeys! said...

And again.... You bring tears to my eyes with your post! Oh Pax, we love you and keep praying for you, your mom, dad, and big brothers!

Me said...

Paxton and your family have been in our prayers since I heard your story. You are an amazing mom! Thinking and praying for you - stay strong Paxton!

cici said...

I am blushing ;)
Thank you for your sweet words.
You are my favorite blogger with your heartfelt honesty and you deserve all the love that you give your little boys and more.
Every Mom should be like you and the world would be a much better place.
{{{{more hugs}}}}

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