Tuesday, November 4, 2014

Talon Turns One.




We all know that when we go through something hard and ugly, scary and desperate that it changes us.  It opens our eyes, makes us appreciate things in a new way.  I had a sick baby. I spent a lot of time in a hospital with him. I watched him fight for his life.  Then I had another baby. A healthy one. I knew things would be different with him in that I would be experiencing it all in a whole new light .  What I did not know is just how deeply that would run.






My baby is one today. 



It has hit me in such a profound way.  This past year has been a bit surreal.  Sure there were days where I lost it and couldn’t keep my head above water, but I never let it last for long.  Mostly though, all of this past year was mother f ing incredible.  The middle of the night feeds. The sheer exhaustion. The nursing round the clock. The still nursing one year later.  The joy my boys all have for each other. The way any one of them will light up when they walk in and see “TT”  or “Chumpy Wumpy”.  The way this family has effortlessly expanded to let in this little boy who completes us.  




Talon is breathtaking.  His eyes, his smile, his laugh, his expressions, his raspy little voice, his laid back, go with the flow as long as he’s got us around self.  I didn’t know it would be this amazing. 4 boys is a lot, but somehow this little boy of ours makes it easier. Better.  




We laugh with and at him.  We all cheer when he says something or claps his hands.  The boys squeal my name “MOM!! TT, COME LOOK!”  when they catch him trying to walk.  We all dance around him to which he will immediately dance right back. The boys are to old for Mickey Mouse, but they watch it because “TT” loves it. They play with “baby toys” because it makes Talon happy.  I find them all in his crib every morning playing with him even though I have told them not to many times.  The risk is worth the love I suppose.  




I have spent this year relishing every single moment. Relishing to a fault if that’s possible. Who knew one could “over relish”, but leave it to me to do so.  I have had to learn to try to tame my emotions. To allow this to happen and be ok with moving forward.  To be ok with him growing up and not being my baby forever.  He will surely grow up fast with 3 older brothers, as much as I fight it.  I go back down memory lane all the time and sometimes that is hard. 

I am not ready to let go of this last year.  It was that good.



I guess that’s to be expected when the years prior were so hard.   Oh’ but watching him evolve into the little boy he is becoming does me in. Hits home just the same as laying in bed with a newborn curled into me. 



I am reminded daily through my children that life is such a miraculous gift.  We can take nothing when we go people. Just the love.  And I am so grateful for this little boy who came in and healed this family so unknowingly.  His little spirit is the balm for our wounds. He doesn’t know it. He won’t know for a long, long time what a gift he was to all five us. Now a party of SIX.  


Happy, HAPPY birthday Talon. You are absolutely dreamy inside and out.  Please never stop laying your head on my shoulder for random snuggles or laughing when I kiss you endlessly.  Always smile at those big brothers of yours who adore you and may you continue to become as wonderful as they are.  You, little boy, are wrapped in love for life. I pray your future is as bright as those baby blues of yours!  



One year ago today you came into our world and changed it forever. 

“Luh you T”, 
Mommy, Daddy, Austin, Mason and Pax


Stats: 

8 teeth
Still crawling. Walks along things. Tries to stand alone.
Still nursing. REFUSES a bottle.
Sleeps through the night.  
Loves a bath, a walk, going for a bike ride, when you pretend to chase him and Mickey Mouse. 
Will eat ANYthing. Favorites being hummus, eggs, cottage cheese and broccoli. 
Drinks from a straw.  
All time favorite thing to do is dance. Has been since I first video’d him at 6 months old.  Dances to music, tv, in the car or to nothing at all just to see us all giggle and jump for joy. 
Loves books. Loves following brothers around the house.  Opening cabinets and pulling everything out and yes....playing in the toilet if the door is left open. 
Says Ma Ma, Da Da, Uh Oh and just recently Dog.  


(all photo credits go to our babysitter, which is a word I so dislike because she is so much more to our family: Miss Jordan Zuccarello.)



Tuesday, September 30, 2014

October.


This month. It never gets easier for me. You’d think it would man, but it doesn’t.  Five years ago this time I was doing the best I could to prepare myself for a journey I knew nothing about.  I was praying fervently for my sons life as he continued to grow this last week in my belly. I  was fu*@ing terrified.  I can say that word because well...because there is really no other way to describe it.  

My unborn baby, with HLHS.  It was all about to unfold in a matter of days.... as my 30th birthday came and went 6 days before his scheduled arrival, I wished harder than I had ever wished when I blew out that candle.  

I feel like 5 years in.  3 open heart surgeries, who knows how many hospital stays, ambulance rides, caths, needle pokes, echo’s and ekg’s in that I would be desensitized to this month, but I am not.  

October.

October 8, 2009.


 My life would forever change.

The person that I thought I was, was no longer. I grew up more in those first two months than my entire 30 years prior.  

I learned what really mattered in life.

I learned how to beg and bargain.

I learned how to be stoic when all I wanted to do was crumble.  

I, the passive person that I am, learned how to fight for what she knew was right for her son.  I became his advocate. I finally found my voice.

I learned how to stand beside this little baby that lived inside of me and keep myself together when all I wanted to do was grab him and run.  To bring him home to his family.  

I eventually got to do that. Many don’t.  I am fully, fully aware of this. 

I think each birthday that rolls around reminds me that we have made it another year.  HE made it another year.  He is not “fixed”.  His repairs are palliative.  We don’t know how long his half of a heart will hold out.  

His birthdays are incredibly bittersweet for me.  I am overwhelmed with gratitude.  So much so that I don’t know what to do with it. I cry.  A lot. I am crying right now. Sometimes crying is all I know to do. It’s been like that a lot on this journey.  

The truth is, we wait.  And wait. And wait.  There are 3 surgeries.  The Norwood, Glenn and Fontan.  There are ages that those happen at. You have a “plan”.  I like a plan!!! There is no plan now that he has had his surgeries and is doing well.  So I guess I feel like we live in limbo a little bit. I want to know what’s next and when, but they can’t tell me that.  It’s not up to any of us here.  

And I know I have said all this before, but tonight in Ju Jitsu, which my boy loves so very much, I was slapped in the face with the reminder as I watched him start out running with his class. Then start to lag behind, then stumble, his face strained and pale. I thought he was going to go down.  He sat down looking spacey and I called out to the coach. He recovered as I sat there shaking.  Just shaking.  Inside I was screaming something isn’t right, but on the outside I kept it together as best I could.  I wanted to grab him and run him home just as I did as a newborn in that hospital.  

Outwardly on a daily basis he doesn’t look sick, but he is.  Sick isn’t the right word I guess. I don’t know what you call walking around with half a heart, other than heroic.  It can’t be easy. Everything other kids do so easily is so taxing on him.  I wonder what he feels like at times. What must that feel like.  

I love him so much and I am scared. As he gets older I get more scared. I can’t explain it other than there is no plan. We watch. We wait.  We hope. We pray. 

Today scared me and reminded me that outwardly he may not seem fragile. He certainly doesn’t act it, but inside that little heart of his is working so hard.  Life goes on. I get that.  For us special needs Mamas, however, the fight continues. Inside our brains and our hearts, even though we walk around looking otherwise (most of the time ;) But most of all the fight continues inside all of our babies.  These kids are the biggest fighters of all. 

His birthday is just around the bend.  It’s going to be a day of celebrating!  FIVE years.  I remember it all, and there is a lot to remember, like it was yesterday.  All of those feelings and emotions threaten to overwhelm me at any time, but especially come October.  There will be tears.  Happy, full of thank you tears.  

Life ain’t always beautiful, but it’s a beautiful ride....



I love you Paxton West. You and your brothers are everything to me. 
Love and hugs
~j

Friday, July 11, 2014

A soapbox rant...

For those of you who know me, you know that I don't stand on my soap box very often. I avoid conflict at all costs. I will agree with someone whether I actually believe in what they are talking about or not just to avoid confrontation. I keep my thoughts to myself unless asked otherwise and I stay pretty even keel unless of course you mess with my kids to which you will immediately see a side me of that has the potential to wind me up in jail.  I think most mothers can agree on that.

It's just that as if I didn't have enough 'stress' in my life day to day just being a mom and a mom to a boy with HLHS, but its gotten to the point that I can't even feed my kids without the threat of killing them, giving them cancer or causing a behavioral issue.  No dyes, no pesticides, no meat, no pasta,  no bread, no fruit or veggies that aren't organic and heaven forbid they drink anything but triple filtered water.  Don't stand in front of the microwave. Don't use that soap, its antibacterial and that is now bad. In fact don't use that soap because it is also laden with chemicals.  Don't sanitize your hands with hand sanitizer even though preventing germs in our home is imperative, because that too, causes cancer and DO NOT EVEN think about applying sunscreen.  Don't wear deodorant.  Don't breathe that air. DON'T DON'T DON'T!!!!! Honestly I am exhausted on a daily basis trying to remember all of the don'ts that I can barely remember any of the do's because there are so few do's left.

I use essential oils to keep us as healthy as possible. I use Wally's ear oil instead of antibotics in their ears.  I buy organic fruits and veggies. I buy organic meat. I stay away from dyes. I only use gluten and dairy free pasta.  We don't eat bread.  We do have chips but those too cause cancer so what the eff man and Fridays in our home are Pizza and family movie night. Pizza!!!!! I know! The nerve!  I have Honest brand soap, diapers, wipes and sunscreen.  I do what I freaking can people and now is also where I go ahead and give a MASSIVE shout out to my husband because without him working his tail off six days a week we wouldn't be able to afford half of the "organic" things we do in a family this large.  Luckily I have a husband who is supportive of doing what we can.   WE try.  But honestly I am spent.  I just want to live. But at what price.  The human in me says just live, but the Mom in me says protect them however you can. So  I read more and find out more ways that we are all killing ourselves by living and then I just want to curl in the fetal position and suck my thumb.  I mean honestly, when did things get so freaking bad.

I stumbled across an article yesterday that told me how the Pediasure that keeps the g tube out of my sons belly is horrible, absolutely horrible for him. Awesome.  Just f*%king awesome.  I, of course, read the thing in its entirety and wound up in tears.  He loves his "milkie". It has been his comfort through two of his three open heart surgeries.  I half it with water (triple filtered of course. No not really ;) each time he gets a cup, but the kid drinks at least two pediasures a day. No he will not drink a smoothie with spinach and chia seeds and strawberries and bananas. He. Just. Won't. Don't think I haven't tried.  Because I have.  This is the kid who has lived many months of his life in a hospital eating spaghetti o's and cheesy eggs and yogurt because it's all we could get in him. The hospitals don't offer chia seed smoothies.  And while I am all for chia seeds, I really am. I am also tired of being wracked with guilt because my son took in whatever he could when his body was fighting so hard just to live and now it's all food thats going to kill him.  Even his beloved pediasure.  It's chock full of shit.  Complete crap, but you know what, he loves it. He also loves not having a feeding tube in his belly even more so I am going to continue to give him his damn "milkie" because it keeps him alive. It gives him the nutrients that oftentimes he is just to tired to get from eating.  There are days he just doesn't eat because he is to goddamn exhausted from his heart working so hard, that we just snuggle in his bed with his blasted Pediasure full of chemicals so that his overworked little body can rest. I am not going to feel guilty for that.


You try telling  that face no.  That little body that has been through so much.


A huge part of  me believes our destiny is already laid out for us. All pizza or all kale. While I don't believe in smoking, doing drugs or eating crap as a full time job to speed things along I do believe that what's going to happen is going to happen regardless of what we consume on a daily basis.  I mean we all know someone who is "the healthiest person we know" and they get sick or find out they have cancer and all the "healthy" in the world didn't change that outcome.  We all also know that person who drinks and smokes and eats like crap or even does drugs and they live forever.  The human in me knows this is going to play out how it is meant to.  The Mom in me still fights to get the best that she can into her kids, but I am also going to let my kids live. I am going to let them play outside and get vitamin D and I am also going to put sunscreen on them when I do ( The huge melanoma scar on my dads neck is my reminder).  I opt for an organic brand, but if you can't afford organic then ya know what...so freaking be it.  No one should feel guilty for that.  We, as Moms, do the best we can with what we freaking have.  What truly matters is the memories you make and the love that you give.  Sure, guide them to healthy habits. You can bet your sweet ass I work hard at that with my own boys, but they will know balance too.  Just as I am learning balance in this internet crazed, information flooded society. Balance between doing what you can and leaving the rest up to the big man upstairs.  Maybe, just maybe, balance is actually the healthiest thing about being healthy. Pure speculation of course.

our balance.  avocado above, pizza crust below ;)



So cheers to the freakin' weekend my friends. Whatever you find yourselves doing, do it with love and most importantly without guilt.
Tonight I am going to order that pizza and those breadsticks, that my son hoards in his dresser drawer because he loves them so much, and I am NOT going to feel guilty.


(notice breadsticks in dresser drawer, i wasn't kidding about that)
Lets be real here people, Pizza Hut breadsticks are the shiz niz.  I get it son. I get it.  We are going to let go of the worries tonight and in its place we are going to make memories.  Memories that are going to be so good they will far outweigh the bad.



I am getting down off my soap box now.  You have no idea the anxiety I have right now that I may have caused any sort of conflict with anyone by voicing my opinion.  This is not directed at a single soul walking this planet. It's just a scared Mommy letting it all hang out. xo

Monday, May 5, 2014

talon michael...his birth story.

rainbow baby. it's the birth of a baby after the loss of one.  a rainbow after the storm per se.  i think there should also be a name for the birth of a baby after having one with special needs.  i say that because there was nothing that could prepare me for the emotion that i would feel when i laid eyes on my healthy baby this go round.

it is no secret that i worried myself to pieces throughout this pregnancy. the high blood pressure and migraines were the proof in the pudding. it was, i suppose, inevitable after the last four years.
no matter the tests or various ultrasounds i would not rest until i laid my physical eyes on this baby.  

as i neared the end of my pregnancy, my blood pressure rose and stayed there.  the migraines increased in frequency and as fate would have it all THREE of my little guys got sick with the flu at once. this would be the first time all of them were man down at the very same time. one typically follows suit, but never at the same time.  i was 38 weeks pregnant caring for three boys who had the flu.  well you can guess what happened next.  i, too, got it. it was a friday that i went in for what would be my last check up. my blood pressure remained high and i was incredibly sick.  so he sent me over to the birth center for evaluation. i was severely dehydrated, put on fluids and told to rest until sunday evening when i would be induced. it was time.  i had a couple of days to lay in bed and do nothing. except that's not really possible with 3 other children at home. thankfully, my closest friends rallied around. brought me food. picked up my kids.  kept vigil making sure i was ok.  i powered through prepping our home and  the boys for my short absence.  i could NOT wait to meet my baby. i thought for SURE it was a girl. i just knew it.  this west baby was the most highly anticipated baby for sure.  everyone could not believe we waited to find out the sex and on delivery day our phones and facebook were all a buzz with friends wanting to know if s/he was born yet.

my aunt and uncle were down from arizona anxiously awaiting the birth as well. 
sunday morning i got up, went and got donuts for my boys, got the weeks groceries, prepared the house for the boys and their caretaker, took a nap and before i knew it, it was time to call and confirm there was a bed for me. there was and i was to be there at 7 to be admitted. i couldn't believe this was happening.  i was going to meet my baby. this baby i had worried over and fallen in love with the moment i knew s/he was in my belly.
we loaded up the car with my carefully packed bags,  said good bye to the boys who were incredibly excited to meet their baby brother or sister the next day (they thought it was a sister too for the record ;),  and took this last, most priceless picture 



and then we left.  as we drove down our street i looked over at my husband and said "the next time we drive down this street together we will have our baby with us, i can't believe this is happening"  we blew through mcdonalds for one last diet coke before i was banned for however long this labor would take. i remember every moment.



even the simple moment of finally walking in to the birth place to actually, finally be there to have my baby this time instead of being there for a migraine or blood pressure.  so many times before i longed to be there for the birth and it had finally come.  we waited in the chair for our nurse to come get us. the double doors opened and out walked miss karen. i knew right away she was going to be awesome. i knew she was just the nurse to hand my letter to.  the one i had typed weeks ago and filed in an envelope with the words "to my nurse" written on them.  it was a letter explaining my last labor and delivery and what followed it.  it explained how terrified i was to do this again. how terrified something would go wrong and how there would be tears and needed reassurance if she didn't mind. i handed that to her when she was stepping out of the room for bit.  she came back, put her hand on my arm and said "i read your letter and will do everything i can to help you through this" and she more than did.  after that we got things hooked up,  meds started and i dozed off until around midnight when contractions woke me up.  i had dilated to two centimeters already and by four i was four centimeters.  i was moving along nicely and definitely feeling the contractions. the anesthesiologist was next door doing another epidural so we decided to go ahead and get mine. i am freaking terrified of epidurals. anything going into my spine doesn't sit well with me, but karen got me through and allowed me to squeeze the ever living hell out of her hands. we thought i would continue to dilate and have the baby come morning which led me to alert the family. they started filtering in around 7 when karens shift ended and right about when i stalled.  
little did i know it would be my longest labor. i fell asleep the night before around 10:30 and was woken up with those contractions by midnight. awake again at 2, epidural in at 4 and up from then on. i was b.e.a.t.  and throwing up every hour from the epidural to boot.  
we waited. they checked me. no changes. we waited some more. no change. by the time noon rolled around with no changes, the throwing up and not being able to move since i had had an epidural for nearly 8 hours by this point ( i was OVER being numb)  i began to get frustrated. i shed a few tears, puked a little more and tried to stay calm. my family was amazing. my aunt kept me excited through the exhaustion. dave held my puke bucket. dad kept the jokes flowing. my sister who had pink eye showed up with magazines galore andboy and girl balloons, ya know just in case. she stayed in the waiting room for hours, we even snuck her around to my window outside so she could see me.  my brother and uncle stood guard quietly waiting and offering to get whatever i needed and my mother had the cameras set and where everyone was to stand for the best footage. finally at two o'c clock i was about 6 centimeters. not where i wanted, but at least some change. then come 2:45 ish my OB came in and said " i would have thought you'd have had your baby by now jen." i was like dear god me too dr. b.  our pediatrician had called to see if i had and behind the scenes miss karen was calling too.  he decided, then, to break my water.  i was all like "halllllelujahhhhh!" actually everyone that had been there since the early morning was all like "halllllelujahhhhh!"  the moment he broke my water the baby descended. i said i feel him or her. the doctor said that happens when the water breaks and left. as in left the building. apparently he thought since i moved so slow all day that i would continue to, but when i said i felt the baby i meant i FELT the baby.  within minutes i was asking the nurse to check me. i was 9 cm.  within minutes after that i said i needed to push. she checked me and i was complete.  it was go time!!! only my dr. wasn't in the building. the room was suddenly a whirlwind with prepping going on, with students and doctor assistants. i was overwhelmed and by overwhelmed i mean four years of emotion and fear coming to a head. there were days i didn't think i had the emotional strength to have another baby after paxton. the fear suffocated me at times, but i had done it. i was about to see the fruits of my labor. literally.  and as i lay there on that table, legs in stirrups i felt suspended in time.  the minutes were moving in foggy, slow motion. in hindsight i am glad he wasn't in the building because in those moments of waiting, the tears streaming my face as the emotion of meeting a healthy him or her are moments i will remember as long as i live. i laid there crying. dave on one side telling me it was going to be ok, my aunt on the other stroking my hair.  suspended and so very grateful for it.  i will never forget the feeling of being moments away from meeting my baby. feeling him in my belly trying to come out, but having to wait.  it was only 15 minutes or so, but it felt much longer. and then he walked in.  i cried as i pushed. cried because it was really, truly happening.  months and months of worry and anticipation slamming into mere moments that changed me forever. it would only be two big pushes.  i remember hearing that his head was out. i asked through the tears what color hair s/he had?  a brunette my aunt squealed!  i cried. the sobs audible. it was happening. and the next moment there were legs hanging in the air and i instantly saw that it was a BOY!  immediately the entire room erupted in laughter. i was laughing so very hard through the tears saying it's another boy over and over.  of course it was a boy! we are a boy family and let me tell you how utterly perfect and beautiful he was.  screaming as loud as he could.



his name would be Talon Michael West. born 11/4/2013 at 3:06 pm weighing 7 pounds 6 ounces.

i did not believe it at the time, but he was also very, very healthy. they laid him on my chest and i cried and kissed him and scanned him from head to toe memorizing every square inch of him. when he cried i would talk to him and he would immediately stop crying. he knew his mama already and that slayed me. they left him on me for quite some time and as it turns out he got cold. i could see his feet turning purple only from the chill, not because he was sick, but i panicked anyway asking everyone if he was ok over and over.  they promised it was only because he was cold, so i sent him off to be warmed up.  this picture of me looking at his feet and the emotion on my face is the emotion of nine months of worry that he wouldn't be ok. there's doubt and sheer fear there as i try to analyze his feet. the feet are a big deal to me since paxtons were blue/purple until his second open heart surgery.



seeing talons turn purple literally made me freeze up inside and whats sad is that my mom happened to send this same picture to my dad who had gone back to work because talon took his sweet time and when he saw the picture he too noticed that talon looked purple. then he saw my face and immediately asked my mom if everything was ok and she said yes why. he said the picture made it look otherwise.  my dad clearly has remaining fear as well.  that doesn't ever go away i suppose. i spent the next hour staring at him, nursing him and loving him.  such instant deep, seeded, overwhelming love.  quite frankly the pictures tell it best...





and then it hit me.  i had been up all night and i sit here today and can say i have never felt such sheer exhaustion in my life. i had been so far behind from the boys being sick, from being very pregnant, sick myself and then the long labor that i was maxed out.  i remember as they prepared to move me up to recovery i could barely keep my head up. once i was all settled upstairs, dave and i just stared at him for the longest time.  we couldn't wrap our heads around that fact that we had FOUR boys. it was then that we both looked at each other and agreed "what would we even do with a girl, we are such a boy family".  nothing ever felt more right than adding talon to the mix.  then i dozed off with talon tucked in right beside me.  he wasn't leaving my side and luckily i had nurses that let me keep him in bed with me.  i remember him waking me up in the middle of the night to eat and hardly being able to believe he was finally here. even through the exhaustion i relished every single moment.  i relished being able to hold him whenever i wanted.  i relished nursing him.  i relished being able to sleep with him tucked in beside me.  all i could think in those foggy, first hours were... "these are the moments i thank god that i'm alive. these are the moments i'll remember all my life".  that song was like a distant lullaby that played in the background of my head those first days in the hospital.

**********

growing my children, giving birth to them, that entire experience is what it's all about, for me anyway.  i would relive it every day if i could.  my proudest moments. ever. end. of. story.  and to experience birth after a birth surrounded in fear. to experience healthy after unhealthy. to experience that release after holding on for so long. it's profound.  it changes your very being.  it's fierce.  literally the only and best word i know how to describe it.


today talon is six months old. half a year on this earth.  i am finally completing his birth story.  



i have drowned myself in every moment with him.  cried many emotional tears over the intense love that fills me up over him. given thanks a million times over him, for his health. for his calming, peaceful, joyous presence. 


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

november 4, 2013. 

the day he was born.

we saw God that day...








Wednesday, April 23, 2014

a post....from meee...i know. shocking.

You know when you finally just say...aww F it. No one cares anyway.  As each day passes and I haven't written I do the typical...tomorrow I will write. Tomorrow IS the day.  The day comes and I  put it off again only to realize here we are months later with no new post. AGAIN.

Sort of like exercising.  Only I have started exercising.  So far...not so good but I am out there doin' the work.  Now as you all know running is in my blood and the minute I put those headphones on and start to jog (and it is certainly a "jog")  it's like my body goes into auto pilot, very slowwwwwww auto pilot I assure you, but I come alive.  Sweat starts cleansing me from the inside out and my manic brain starts to chill a bit.  With each passing mile I think of something else I want to write about. I miss it you guys. I miss my outlet. I miss hitting publish at the end of my post with that freeing feeling of having let it all hang out. The good, the bad, the ugly and the awesome.  But then I say to myself but no one reads anymore because you never post...so I find something else to do with my time (and that's pretty easy these days with a 7, 6, 4 and 5 month old ;) 

But...then I get this.


This came through my phone..............





And here I am.  I am showing up.  Even when showing up is hard.  

I don't particularly write for anyone else. I write because it's incredibly therapeutic for me, but then I read that someone can relate to our journey and it empowers me to continue on with our story.  Reality is, it is far from over and far from pretty.  I am back in counseling.  I thought I was coping ok, but my anxiety is getting the best of me. I constantly check for Talons breathing. For Paxton's. I freak when Mason says he has a headache.  I just worry all to much.  There's healthy worry and then there's stopping what you are doing every 20 minutes to go stare at your kids stomach moving up and down.  I have post traumatic stress disorder. I thought that shit went away after awhile. It doesn't. About two weeks ago we had to take Talon to the emergency room.  A fluke, freak thing happened when I was taking him out of the bath tub. I was drying him on the floor and the boys slammed the door on the other side of the wall beside us and I guess it vibrated just so that a wooden picture fell off the wall and hit Mr. T square between the eyes.



The scene that ensued was bad.  I flipped out, and by flipped out I mean lost it. I knew the first 'traumatic thing to happen to Talon was going to be bad, but in hindsight I really saw the "PTSD" (and honestly I hate saying ptsd...I don't know why. It's just a title. A thing. Whatever. I digress.)  Of course Talon was crying, a wooden picture nailed him just between the eyes, which in turn made his eyes bloodshot, but in my panic I swore his eyes were bleeding. I was screaming "his eyes are bleeding" to my husband.  He, of course, kept telling me they were just bloodshot, but I couldn't see through the tears. I just saw red. I had swaddled him in his towel and was rocking him back and forth telling him how sorry I was.  It's a weird feeling to think back to those 15 minutes. It was almost out of body. I literally couldn't breathe.  He's ok. He was ok then I just needed to allow myself to see that.

I was changing his diaper just today and wrapped it all up and set it aside.  Literally a habit from four years ago. You see we used to have to weigh Paxton's diapers even through his last surgery so that we were able to monitor his fluid output.  I don't um...have to do that with Talon, but old habits die hard I suppose. I was kind of stunned when I caught myself today.

Life goes on though. PTSD or otherwise.  I am working on working through it.  I am working on redirecting my thoughts and trusting in this journey. Just as I have had to do so many times before.  Talon is ok.  He is healthy. I need to allow myself to believe that.  Some days I just don't know how. Others I think to myself, you've so got this.  I don't have control over any of my boys ultimately. I can only do what I can. I can't control when Paxton's heart is going to fail. It's going to one day.  He has half a heart.  One ventricle. Two chambers.  Its hard to look at him and see that.  It's hard to believe he's not perfectly whole and healthy.  Man alive is he gorgeous. And smart and a total spitfire.



He's ok right now.  I need to stop waiting for the bottom to fall out and enjoy the ok instead of worrying it away. And I learned, thanks to a damn good therapist, that its OK to worry. That its expected after everything we have been through. I find I am hard on myself about that...any other  special needs mamas do this?  I feel like if I just let it all go something is going to sneak up on me, much like jinxing myself, but if I stay guarded I will always be prepared. Horrible way to live right.  Ain't nothin pretty about any of it, except the picture above. He is so worth it.  He is worth every gray hair. Every sleepless night. Every anxiety ridden moment.  I would live his journey all over again if it meant having him. I continue to live this journey for him. He is my inspiration every day.  At baseball practice when he's sweating profusely with a chest guard on, wires taped to his chest and monitors hanging out his pants the kid is still smiling and not letting it stand in his way.  If half the world had that outlook....


So for him I will be strong.  I will let him live the life he is meant to live just as I am living the life I am meant to live.  It may not be easy. There are most certainly moments I crumble and panic, moments I am not all that proud of, but I am human. Sometimes I don't know what to do when I look at him and the fear takes over.  I try to look down the road and my throat tightens, but then he will sass me or smile at me with those damn freckles and all is right with the world.  

So here's to you New York! I am going to do my best to keep this up for ya.  It helps. It feels good. Thank you for making my entire week and for motivating me to show up when I don't feel I have all that much to say...

Talon is perfect. Quickly approaching the six month mark. Half a year here on this earth.  Insane how fast time passes. Bittersweet. I love me a newborn that's for sure, but I absolutely adore the age he is at right now too.  No one lights up when I walk in a room like that baby does. When you pick him up to hug him he literally wraps his arms around your neck and squeezes.  My almost 6 month old gives the. BEST. hugs ever.  He's like a grown up in a baby's body.  A really chill, happy grown up.  He's the most content little man to grace this Earth I tell you.  He's 20 pounds, has two teeth, loooooves to dance, loves his mama and LOVES to eat. He's still nursing, but has started baby food, which I do NOT cook. Ain't nobody got time for that ;) He has not rolled over yet, but I am assuming his buddha belly is a bit of a roadblock in that area.  In due time... All in due time.  Austin, Mae and Pax ADORE him and are the best big brothers ever.  Talon, #4, fits seamlessly into our lives and I couldn't be more proud.  The boys played baseball this season, rocked it and have done amazing in school. 

...Life really is good...





We all have our stories that make up who we are. Our battle wounds. Our scars that show we made it.  My scar is ptsd, but the story that led me to that is simply incredible.  Maybe the conclusions are simply a reminder of just how far we have come.  How brave the fight.  Because how would we ever really learn to cherish the beauty in the good times without fighting like hell through the bad...


Until next time....

Love and hugs
~j

Monday, January 27, 2014

...twelve weeks...

I've decided that writing is a little, no scratch that...a lot like exercising after a hiatus.  It's been on my list. It's been on my mind and especially in my heart.  I have been through a myriad of emotions since Talon has joined our family and I have done the opposite of what I did when Paxton was born. I found I am just unable to write.  Tonight though, I think I am ready.

I have four children. Four BOYS!  There was so much talk of having a girl while I was pregnant, that I think I was partially brainwashed. I truly believed he was a girl until the moment I saw his boy parts to which I burst into laughter.  The whole room actually erupted in laughter when we saw it was another boy. Sheer, joyous, belly laughing laughter.  As he lays here beside me now I cannot imagine having a girl.  Talon fits so seamlessly into our family I can barely remember life before him.



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

I remember being in the hospital drowning myself in every single moment with him.


I remember exactly how I was feeling in this picture. It was like I couldn't get close enough to him. I could barely stand the amount of love filling me in the hours since I had met him.
I did the same thing once we got him home. I would literally sit and stare and hug and kiss him allll day long. I remember holding him up to my face, tears pouring down my face as I looked up at Dave.  The love for my boy was literally overwhelming. I never thought I would have another baby after Paxton. Sure as hell didn't think I was strong enough to, but I did both and there I was after 9 months of worrying if he would be healthy with a perfectly healthy little boy in my arms.  The gratitude enveloped me twenty four hours a day.  Almost to a fault. I never wanted to put him down or miss a single, solitary moment.  I would find myself avoiding people. Avoiding life and having to leave my room because all I wanted was to spend every minute of life with my healthy baby.  I eventually came to understand that because I missed so much with Paxton and had lived with that helpless feeling of not being able to hold my baby that I was clearly making up for lost time. I would look at Dave, eyes full of tears nearly every day and say "I just love him so much." It's all I knew to say.  My facebook post a couple days ago said it all...



It couldn't be more true. It's fierce. All consuming.  You learn the hard way just how easily it can all be taken away and as I have said so many times before, it just never leaves you.


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

Today Talon is already 3 months old. 12 glorious weeks ago this day, Talon graced us with his peaceful, happy, completely content presence.



I remember it all. I have relished and savored every. single. moment with him.  Even when he wakes me in the middle of the night I pick him up and immediately smother him in kisses. So so grateful for the opportunity to be with him and be able to nurse him in those foggy hours instead of being shacked up at Ronald McDonald house separated from him.



I learned so much when Paxton was born and throughout his journey. The picture of Talons birth is a very different picture than that of Paxtons.  My cup runneth over beyond anything I can describe.


And my older boys...they get to have a baby brother in the way they have always deserved.  They were young when I left for months to be with Paxton, but not so young that they don't remember or weren't affected by my absence in a tremendous way.  I remember praying while pregnant with Talon that they would be able to experience the gift of this sibling through childlike eyes. Not eyes that see feeding tubes, pumps, scars and heart oxygen monitors surrounding them.  While they didn't know any better at the time I still prayed they would know this birth in a much less stressful state. There were days with Paxton once he was home that he would spike a fever while the boys were at school and I was gone in an instant, All Children's Hospital bound, before they even got home and I wouldn't return for weeks. It was a less than ideal situation, but this one. This one now has ALL of my boys, Paxton included, surrounding each other as brothers should be. It slays me to my core to see how much they love Talon and accept him as if they too cannot remember life before him.



While we don't know how Paxtons journey is going to play out.  Today, for right now, we are a complete family and we have come full circle. When I think back to those lonely days at the hospital, alone by his bedside, I never in a million years would have pictured us where we are today.  We have all grown so much since Paxton graced us with his pillar of strength presence. Now he gets to be the big brother he's always dreamed of and to the sweetest little man ever.  I am so incredibly grateful for the gift of loving Talon through Paxton eyes.  It's a different kind of love after you have watched your child cling to life on many occasions.   It can be overwhelming at times, but the intensity of that love is priceless.

So while it has taken me 3 months to finally hop back on that writing treadmill, I am hoping now that I have taken the plunge that I am able to continue to document our lives.  This blog has proven to be a beautiful reminder of our journey and just how far we have come. Life is pretty awesome like that.  Drops you to your knees and trust me,  I have been there many times in the last 4 years.  Begging. Sobbing. Consumed with terror.  Today I am on my knees yet again, only this time it is in sheer gratitude.


Love and Hugs
~J

Talons birth story to come...

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