the hearts gratitude....
the boy that has brought so many people together in a way that i did not realize was possible. i came to understand through the big blue eyes of my little boy that amongst the chaos this world tends to hold anymore, that people can, will and do slow down to reach out to those in need. those fighting fights they didn't ask to fight, but do anyway. for that... i am grateful.
thank you. thank you dear friends who have donated to such a wonderful cause. i have been still in writing this post because sometimes i don't know how to say thank you in a way that expresses how much it means to me, to us. a simple thank you doesn't do it justice.
1.) that you take timeout of your day to check in on our tiny little corner of the world, namely a boy with half of heart.
2.) that you choose to give your hard earned money to these children who struggle every. single. day, who take medications every single day, who walk around with feeding tubes in their bellies, who have helicopter moms watching their every sneeze, cough or snort for fear it is something they won't be able to fight.
from the depths of my once shattered, but now so incredibly grateful for this journey heart, i thank you. thank you to those who let themselves be known and to those who do not (Scottie To Hottie!!!) for following us on this journey. he's worth it, of this, i promise you!
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10 years ago, Paxton would not have lived. they did not have these 3 surgeries that have extended his life, allowing him to grow bigger, allowing us precious time. funding, research and freaking A-MAZING doctors and surgeons (Stapleton and Chai to name a few!) are what have given Paxton this chance. can I get a whoot whoot shout out to them!!! 3 open heart surgeries peeps!!! THREE! at one week old, six months old and two and half years old. it blows my mind every time i write or say that. it blows my mind even more to go back to those days, those endless, endless days in cvicu. the months, where time seemed to stand still. how i did it, i will never understand and yet i know if it happened again tomorrow i would do it all over again (mommy auto pilot). that said, what did get me through those days was this blog and the ability to spill it out. to cry all over the computer. to slam that mother shut in anger. only to open it again and find messages from you all
( i interrupt this writing sesh to say that this universe is ohh so wise... i am writing and listening to norah jones radio and michael buble's i wanna go home just came on... oh my heart!!! i remember the exact moment i listened to this in my room at ronald mcdonald house. my one month old baby was across the street fighting for his life. fighting to go home. i remember every. single. thing. about that moment. "...and i feel like i'm living someone elses life..." i remember hearing that line and rolling over into the fetal position and crying like i've never cried before, alone. oh but, here i am, at home writing just as i was then, reminded once again that we freaking made it. thank you universe for that gentle reminder; gratitude.)
... the messages... from you all. they very literally saved me. to know that people cared, we're checking in, lifting us up and loving us from near and far was one of the greatest gifts i could have been given. it seemed whenever i needed a swift kick in the ass, just the right person would come along to give it to me. or if i needed a hug, another person would send just the right words to remind me that i could do it. my time in the hospital with paxton was a time in which the internet, texting, cell phones and computers became a thing of praise, because y'alls lives don't stop just because mine did and yet the ability to receive those thoughts and pick me ups at the touch of a button allowed one mama fighting so far from home to feel supported. so thank you then, for wrapping us in the virtual love and thank you now, for continuing to do so even though the battle has ceased for the moment. time will tell how this journey will play out. In the mean time it's up to you and me and paxton to keep fighting because 10 years from now when his half of heart may begin to fail, maybe just maybe, there will have been enough research in that time to prevent, fix or help him.
the battle has ceased, but the fight continues.
i love you all so much and while a simple thank you will never be enough, a thank you it is for now until i send you your heart shirts (designed by mowah!!!) out to you at the end of October. The virtual love, the virtual hugs, yah they're coming to you all now. Whether you donated, said a prayer, read along silently, or write along in praise!
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| that's an indescribable love right there... a love that never knew if it would see her son alive or get to hold him, but they put him on my chest and it was all over... all those weeks of wondering...over... i couldn't take it... (ps that's a shit ton of people, with more out of the cameras eye behind the doctor, ready to step in at any moment...there was NO shame in that room :) |
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| there are no words...none... |
with gratitude, love and massive hugs~
j
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