|blurry, but my favorite place to be...|
PS~ Paxton pic awesomeness can be seen here! Prepare yourself! They are gorgeous! He is gorgeous! Make sure you let me know what you think! Cause lord know I don't even know where to begin to choose ; )
Monday, February 27, 2012
Thursday, February 23, 2012
Sometimes quickies are all life allows and if you read last nights, or this mornings rather, post, you will see that I slept for approximately 3 hours last night. Which led to a complete meltdown come mid day today leading to me pulling up to the boys school in a heap of tears. Lucky for me the schools director, who happens to also be my friend, rounded up the boys for me, brought them out, piled them into the car and sent us on our way~home. Where we needed to be. We all piled into Mommy's bed and we laid there until Daddy got home. It was one of those days where I clung to every fiber of my being to keep going. But I have peeps. Peeps who won't let me fall.
Jaime, whom I had a walk date with this morning. Who bought me tea and a book with sayings cause we all know I love inspirational sayings. She brought her wisdom and her laughter and she allowed me to just vent and when it got deep, she listened and then God, yah he stepped in and made us literally pee ourselves laughing on a sidewalk downtown with old people everywhere staring at us. It was awesome. I left renewed.
Then, Ashley who I mentioned above, reminded me it's ok to cry and to be tired. Who also reminded me that I have many more days like to today coming up and that it is OK to lean on those around me. I hate it. I hate, hate, hate having to lean on people, but I am learning and I thank you Ashley for reminding me me of that.
Beth who didn't hear from me all day shoots me a text and knows when she doesn't hear from me that I am man down and doesn't ask she just says she will be here in the morning to get my kids, all of them, and that I will sleep. She knows how I am. She knows I don't like help. She knows I feel guilty so she just doesn't give me the option. To know I can sleep in tomorrow is seriously like freaking winning the lottery right now. Thank you "Martha" for always taking the bull by the horns. You know me well!
Then this evening, oh sweet heavens this evening....
I had set up a photo shoot with this photographer that I ran across through this whole Lion King circle of life thing to which I will elaborate more on tomorrow. She is good, by the way. I set up this shoot because my mind always has to do these shoots just before big surgeries just in case. I know, its morbid, but its what I do. Anyway, I met her tonight. Loved her, Pax loved her and couldn't quite say her name (Monet) so "Mommy" it was. Anyway at the end of our bad a*# beach session she handed me a card. I immediately asked her if I was going to cry. Any guesses on whether I did or not?
Monet, Jaime and Family, Nicole and Family, Miss Dunwiddie, The Harris Family, Ms. Jennifer, The Folz Family and Kathy Morris and Family~ from the bottom of my heart I thank you for the gift of this photo session. These pictures of our boy are priceless to us. I can't wait for you all to see how happy and free he was tonight on the beach. He is at home there. He loves it. I drove home in the dark and the two of us, "the dynamic duo", were both completely quiet. It's like that fresh air and salt left us both capable of figuring out the world. I contemplated a lot on that 30 minute drive home. I contemplated the people that have come into our lives since making one very simple decision 6 months ago. You all have welcomed us, you have taken our family under your wings, wrapped us in love and prayer beyond measure and there is never enough thank you for that. To all of you, we thank you. For tonight. For last week. For every single day that you think about our boy, our hero and lift him up in prayer. He is truly a testament of strength and I have never been more proud of anything in my entire life.
Thank you friends old, new, near and far for taking me from rock bottom this afternoon and renewing me tonight.
We love you all!
I am going to go to bed now. I am going to catch up so that when I see you next I can thank you face to face!
Sweet dreams will surely grace me tonight because of you!
Love and hugs
ps I apologize in advance for missing words or horrible grammar. I am cross eyed at this point, but would not have slept a wink had I not had a chance to thank my peeps! If I could call every single one of you right now I SO would, ok lets be real here. I do NOT talk on the phone :)
I once had a comment from a reader saying she loved how I laid it all out there "curse words and all". Let me tell you something at 2:12 in the A.M. I would like to start this post out on a whole different note, but am worried I might be reported. It would go a little something to the effect of....." oh for f#@k sake can a girl just get caught up in life already..." my body is f-ing beat if you really want to know, which you may not and if you don't, then move along to the next blog where birds chirp around perfect, happy little heads ;) but here, oh' here, we let er' all hang out and tonight I am tired. I want my Max(nanny max that is) back. So that when I do finally fall asleep tonight I will fall asleep knowing that Max will let herself in at 7:30 on the dot and the rest is history and my never caught up self that was in the hospital this weekend, did I mention that, oh yah, I was in the hospital this weekend.
What I am hoping will be the most sense of normal we have had since the day we heard the words "there is something within your baby's heart".
Tuesday, February 21, 2012
Sunday, February 19, 2012
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~
Thursday, February 16, 2012
Sleep will have to wait so I can update those who lifted my baby up in prayer today on how he is doing. It's a quicky so forgive me just this once, it was afterall a long day. Pax did amazing today! So amazing that we are home and he is resting comfortably in his bed. Cath went well and showed he is ready and able to move forward with his Fontan! We see his cardiac surgeon on 2/27 with the actual open heart surgery to follow in thr next couple of weeks following that appointment. I say "let's do this bi*#%es!" cause really whats waiting going to do except cause me more wrinkles, gray hairs and French fry consumption ( its comfort food alright, sheesh!) Pax woke up from surgery incredibly pissed at the world, except me of course, he just kept screaming "mommyyyy" "i wanna go home" ugh rip my heart out and stomp on it with stilettos why don't you. Even I couldn't stop the screaming , which led to blood and doctors and nurses rushing in and new pain meds that took him directly to his happy place ( lucky! it is my thought that it should be hospital policy moms should get one dose too, for the suffering. Seems fair right?) Once my man was in lala land bleeding stopped. He slept it off, woke up a smidge grumpy but hey dude had cameras in his groin I'd be a bit of a you know what too. Then after about 1 1/2 hours of legit pms meltdowns over oh a wrinkle in his gown, all of a sudden my Paxie was back in business and long story short, he flirted his way OUT of there! I said this was going to be quick. Erhhhh... Guess I needed to vent. I love that I texted this entire post. As if I needed anymore practice. ;)
And it's like tying my hands behind my back to post without pictures but I don't know how to do that from my phone on blogger. They don't have an app for that...just sayin... so gorgeous boy pics will have to wait !!!
Thank you to each and every one of our prayer warriors!!! You all mean more than you will ever know to us. The emails, comments, texts, all of them lift us up when we are so scared and remind us we are not alone. Until tomorrow. Thank you.
Love and hugs ~
Wednesday, February 15, 2012
Hello all from my bed here at the West house to which I will quietly wait for my husband to fall asleep then sneak out of and down the hall into my babies room. I just took a shower and quietly panicked. You see, I stopped. I stopped for more than 20 seconds from laundry, dishes, wiping counters, picking up toys, laying out outfits, making lunches, anything, anything I could do to keep from sitting still. Finally at 10:30 I knew I needed to shower. I knew I needed to begin to try and wind down for tomorrow. The warm water hit me and all of the what if's began to race through my head at lightening speed. I know of HLHS babies that have died at the dentist office, in their sleep, getting a circumcision etc. etc. It's just a cath Jenn, just a cath. Then I remembered the under sensitized conversation I had with my friend and I reminded myself that it's ok to be freaking my freak. The kid has half of a heart and he's going under anesthesia~ that in and of itself is hugely risky. So it's not open heart and bypass, but that surely doesn't mean this is going to be a cake walk. I will never let my guard down because the one damn time I do.... So I panicked. I let myself. I will surely panic again when the lights go out tonight, but tomorrow, tomorrow morning I already know the drill. Auto Pilot Mommy will be back in business. Yep, she comes out just when she's needed and has never let me down. I will go through the motions. I will be there stoic as a statue. I will hold him from 8 am to 1 pm while he is without food. I will hold him down while he gets an i.v. and screams bloody murder. I will hold him in my arms while they give him gas to put him under and I will watch his eyes roll back in his head and I will feel his body go limp in my arms and I will lay him down and I will get up and walk out and glance back one last time and go wait in the waiting room and do what I am "supposed" to do. Auto pilot. It's Gods precious gift to us Mommy's of sick babies. And when he is all better and we are home and he will be better and we will be home I will lose it then, but not before.
Prayer warriors, it may not be open heart surgery, but if you read this tonight, if you read this in the morning, if you read this anytime before 3 pm tomorrow please pray for my baby boy and that his heart catheterization goes smoothly. Pray that we receive some answers. Pray that they are able to coil off any collateral's as needed. Pray that his bleeding is minimal. Pray that when he is scared, he feels that he is surrounded in peace and love. And surrounded he is!!! I have an entire post to share with you on the massive amount of love going out to my boy this week. We have peeps near and far loving on him. Wearing red. Facebook friends. An entire school of friends. Mommy friends. Teacher friends. And I have pics. A whole stash of them. A whole post I am itching to get typing. A whole host of thank yous I am ready to shout from the roof tops. Cause if anything fills me up when I am scared, it is knowing that he is loved. Loved for all he goes through. For all he fights for. For all he represents. He is not without a purpose. The pain and the hurt is not for nothing my boy! So many people adore you. Adore those big blue eyes and that kick a*# personality of yours!
So for now I am going to go dry my hair and try to make myself feel pretty because sometimes a girl just needs to feel pretty when her whole world is being handed over the next day. So do my hair I will. Then I am going to go crawl in bed with my boy and remind myself that it will not be the last time. Not by any means.
I will keep you all updated as I can. He has a late cath (1pm) so it will be a late update.
Warriors take your mark!!!
Ready! Set! PRAY!!!!!
Love and Hugs~
Monday, February 13, 2012
I have several drafts in the making right now because every time I start writing I kinda make progress then I have to stop for some reason or other like to oh' I don't know sleep or tend to a child or something.
I can say I have been sleeping better. I don't know why. There isn't really a rhyme or reason to it really except I took myself off of all and I mean all meds. Over a month now and I am on nothing. No anti-anxiety. No anti depressants. Nothing. I did it myself. Weaned myself slowly and here I am. Do I cry more? Yepper. Sure do, like a lot. But you know what. I don't feel foggy anymore. I sleep like a rockstar and I feel like I have more energy. Do I have my moments? Don't we all? I am pretty sure my doctor and therapist alike would have a lot to say about me taking myself off of these meds right before a big life event like my sons impending surgery, but here's the thing. I have already done it once all on my own without the help of "drugs". I gave birth to him without them. Sat through the first 5 hour surgery without them. Sat for 2 months day in and day out without them. So I am pretty sure I've got this. If anything I feel better now than I have in a long time. If for no other reason than I am freaking sleeping people! Now, back to my drafts, I have several in the making because I just got back from North Carolina, but that's gonna be a post in and of itself. I also started another post letting you all know that we met with Paxton's cath surgeon and it was letting you know that his cath is scheduled for this Thursday.
His oxygen is now holding steady in the mid to upper 70's which is indicative of his need for surgery. The heart cath will give his surgeons a better idea of his heart function and allow them to coil off any collateral's that may have formed before he goes for his open heart. The surgeon and his cardiologist are in agreeance that after a good visual of his heart that his third open heart surgery, or Fontan, will follow shortly after.
We are scared and nervous. We just want this to be behind us and know that he is going to be ok. I have moments where I can't breathe from fear. I am paralyzed that these are my last days with him and then I remember how incredibly strong he is and how he has beaten the odds all along.
So I got this text from my friend last week saying "thinking of you guys today" as we were en route to our pre op cath appt. I replied "thanks girl, it's just for a heart cath which is to prepare for the big one, but you know "its just" is so much more with pax..."
Her reply: "listen to yourself... "its just a heart cath"....that's a big deal. You have been under sensitized."
And I thought about our conversation for a long time because the truth is I am not under sensitized at all. In the heart world a cath tends to be a cake walk, yet to me, anytime my son is under anesthesia is reason to feel the need to vomit. Sometimes though I feel as though it's not ok to make a deal out of the little things and yet the little things are SO not little things especially with a single, yes single, ventricle baby. So thank you friend, you know who you are, for reminding me its ok to worry about the big, the little and the dang in between.
So in t minus 2 days we peace out to All Children's Hospital and round 3 of this insanely crazy journey begins. We are however, blessed to have amazing people behind us every step of the way. Be it, friends, family, our neighbors or parents and students at the boys school; we are so very blessed.
Take note of the dates to remember section in the picture above. Did not know that would be in the parent newsletter. Definitely cried when I ran across that unpacking backpacks.
I will be sure to keep you all updated as best I can on Paxton's progress as time allows. Thank you to our readers near and far for taking time out of your busy lives to check in on our little corner of the world. To us its the whole world and if I can share anything with you from our journey its to hug your kids a little tighter, find patience where patience is low and be grateful~so very, very grateful for health. For I have spent far to many days surrounded by children suffering from illness.
A little sneak peek on my NC trip....you down??? Alrighty then.
We spent a whole hell of a lotta time here. Stay tuned to find out why! ; )
Keep those prayers a comin' peeps!
Love and hugs
Sunday, February 5, 2012
We were lucky enough to have met her nearly two years ago. I will never forget when I met her in Paxtons hospital room and she looked at me and said "you have had three kids, holy crap you look amazing!" It was true love!
Girlfriend took us on full speed ahead. Took over like she owned us and never looked back. Neither did we. We never worried about a thing from there on out. She was our boys nanny, my personal assistant because we all know I can barely remember to get dressed in the morning, she kept our house spit shined and above all was my friend. She knew when to step in and when to walk away. She was around for some pretty deep shit in the West family and kept on trudging. If anyone was sick she brought us what we needed. If I needed a good cry, she put me to bed and told me not to move. If I needed a good laugh she was more than good for that! I mean, I have more memories of her making me pee my pants than I can count. And last night we said good bye after two years. Two years of watching our boys grow up. Watching Pax get sick and better, sick and better. Tampa rundown hotel make the best out of it trips, Tommy B's "mellow"girls night, Larrys (duh!), our Friday afternoon gossip sessions, picking out my outfits for all my events (cause you know I am so famous and all), teaching me how to be a diva, M.I.A.M.I trick, fort myers beach summer, usher, jason aldean, key waden boat days, janet days, max show days, post up, pax saying "oh shittt" and finding out who really taught him that. After two years the list goes on. What I know right now is my girl is on a jet plane alone and heartbroken. She is headed back to her birth country, but America is her "home" country. Maxine Rose we love you and adore you and will never, ever be able to thank for all that you have done for our babies and for our family. You were not only our nanny Max, you were my very dear friend and always, always will be. So as per our style we will carry on with the rest of the story in pictures. (all are i phone pics and some are better than others, but all moments never to be forgotten)
|lake june baby|
|goodbye nanny max night (lots of tears)|
|typical max fashion|
|the west boys "posting up" learned courtesy of max|
|tommy b's~so fun!|
|boys famous xmas pic courtesy of max|
|en route to MIAMI for nanny max's 21st|
|bloody's in miami|
|max and her boys|
|max and her special boy|
|cinco de mayo|
|always entertaining her boys|
|biggest goofball i know|
|you know your best friends when you hug feet|
|heuey, dewey and leuey|
|my most fav pic of us everrr!|
Love you Max. It's not good bye, it's see ya later!
~Love Betty, Ron Ron and your precious boys!
|courtesy of our other half~morgs|