Sunday, February 28, 2010

My Whole World





OH.
MY.
HEAVENS.
It just doesn't get any better...


post signature

Wednesday, February 24, 2010

No Such Thing As Sweet Dreams

The mind can play dirty, nasty tricks on us. Mine loves to at night, when I am in a deep sleep and have no control over the thoughts that bombard it. I am so very busy during the day that I am able to keep any scary, worrisome thoughts at bay. Only problem is they love to catch up with me at night.  I spent many a nights a wreck while Paxton was still in my belly, but this, now, is just awful. I guess it's because I am so close to my little man now. That's not to say I wasn't bonded with him in utero, I most certainly was, especially after losing Tadem, but now that he spends nearly every minute of the day and night with me, it's a bond I cannot describe.  He lights up when I walk in the room. He calms when I (and Kimmie, his Nana, shall we call her =) holds him.  It's such a bond. So when last night, I was in the deepest sleep and dreamt that my husband was laying on our bathroom floor sobbing and screaming "he's going to die" I cannot describe to you how I felt when I woke.  It seemed so real and my heart was panicking as I remembered how I truly felt like I was in that moment.  While it was just a dream, or nightmare rather, it shakes me to my core.   

So I just run...

And I run because if I don't, I may lose my mind.  I have always been a runner (jogger, really = ), but in all of my years of running, I never knew how it would save me come today.  I am filled to the brim with worry and fear. I try to stay positive, know that what is meant to be will happen, but my hair is still falling out. I still have nightmares nearly every night, that is when I actually sleep. If I sleep I usually wake up from some nasty dream only to lay awake for hours begging God to let me keep my son.  The other day I was ready. Today I am not.  It's a roller coaster.  A roller coaster I don't know that anyone can truly understand unless you are front row on it.  

I mean look at this face:

Anyone, who knows me and knows me well, knows that I am full blown o.b.s.e.s.s.e.d with my kids!  All three of them, but there's something that hangs in the balance when you have a special needs baby. While I know something could happen to any one of my kids on any given day, I know the chances of it happening to Paxton are much greater.  It's hard to hover between positive and scared to death. It's hard to have faith in what's meant to be and what I want.  There are no words really and yet I write. I try to explain what it feels like to do this.  I do it for me. I do it for others that have yet to.  Paxton is amazing and next week we will make the journey to Tampa where I will hand him over so doctors can put him under anesthesia and lead a camera through his groin to look at his half a heart.  Day to day it is what it is, but writing it is such a harsh reality.  He is sick. Strong, but sick. Those closest to us will tell us he is pale, blue and purple looking. Not in a bad way, it's reality.  I am grateful for their honestly. I see it, how could they not. Then again, when we go to playground outside in the fresh air and people gander at him, I see they have no idea.  Imagine looking at such a beautiful baby and never having a clue the story that he holds.  I wonder if they too notice his paleness and don't mention it or if ignorance really is bliss. 

I hate all of this and yet it's the best thing that's ever happened to us.  How is that possible...

Ohhh, this life. Never ceases to amaze me and yet has always prepared me along the way. Such irony. I continue to keep myself as busy as possible. I smother all my babies in Mommy kisses. I find strength where strength is low to take care of them better than I ever have, honestly if that's possible. Not trying to toot my own horn, just can truly say that I give my kids my all! My husband would agree with that any given day of the week.  He says he wants to come back as one of our children. Can't say I would mind either = )

Paxton, in spite of my nerves, continues to do amazing. We have had zero incidences to date since he first came home.  I had fully prepared myself for some emergency trip by now and yet he has other plans. He loves it here at home. Thrives here at home. He is as enamoured with his big brothers as they are with him.



He is at least 16 pounds now.  Alllmoossttt rolling over. Talking up a storm and loudly, guess you have to in a house full of rambunctious boys, yes Paxton you will fit right in.  He has his first two teeth literally just under the surface.  Moved up to a size two diaper.  Is totally in between 3-6 month clothes and 6-12.  The 3-6 are wicked tight and the 6-12, he looks like a drowned rat in.  He has begun eating baby food (thanks Nana Kimmie) and loves, loves, loves it!  Opens his mouth and gobbles it all up.  This is fantastic  because any extra calorie we can pack on him the better!


I make his own baby food and he is pretty thankful. While I have always been organic, I have never done home baby food and I find it hysterical that I am doing it for the third and not the first.  I just learned how freaking easy it is and I feel that Paxton has enough against him toxicity wise, if this is any indication:


Life continues to drop me to my knees, begging for mercy and just as quickly lift me up and remind me of all of my blessings. It's funny how that happens. The times that I feel like I am drowning and will never return are just as powerful as the ones that remind me how incredibly awesome this life is.  I can do this.  Paxton does it every day. I too, can be that strong.  I too, WILL be that strong! For him, for all of us.  

Tonight, when I lay my weary head to rest, whatever dream or nightmare chooses to make its way in will be just that. A dream or a nightmare. 

Sweet sweet dreams my friends. My babies.




post signature

Tuesday, February 23, 2010

Floats, Lollies And Police Cars, Oh My!

We spent last weekend at the downtown parade and I just had to share some pictures of what are obviously two of the most gorgeous little boys on the planet.

Yes, the eyelashes and eyebrow on Austin's right side are white and yes, it is absolutely adorable. Rarely does anyone look at him without mentioning how cool it is. Not sure if this is going to give him an ego boost or make him self consious. Leave it to adults to always point out the obvious right to a child's face.

Oh, Mason those cheeks! Honestly, how am I not to supposed to smother you all day. I always thought he got those cheeks from Daddy until I looked at the picture below and I hadn't realized that I, too, have cheeks. Maybe I need to lose some weight or maybe they are genetic, either way you don't realize these things until you look at pictures of yourself.  In any case, why do they look sooo much better on Mason than me = )

So here he may look like me but when you look at the next picture you will see he in fact looks nothing like me. He is a pro-te-ge of his Daddy!


See! Protege'! Austin is Mommy through and through.

Three out of four of my men.  As my husband always says, "Mamas queen of the castle with four boys in the house." I mean really, do I look any happier. I just love being in the midst of my men!


This picture, oh this picture melts my heart. Look at how the brothers are holding their mouths exactly the same as they watch oh so intently whatever float was going by. It's precious!


This my friends, is what life is all about...

post signature


Monday, February 22, 2010

Forgive Us

Oh dear friends, I sure feel like I have written this so much lately, but exhaustion hangs on my every limb.  Not only did I catch the flu, but apparently my body doesn't feel the need to sleep anymore. I will fall into bed exhausted beyond measure only to wake up around 1 and stare at the ceiling for hours and I do mean hours.  It's taking a toll on me. I am guessing it's due to my nerves.  I find my mind wandering and have to get up to distract myself.  I will say I have read and finished the best book called THE HELP by Kathryn Stockett. I was literally sad that it ended. That was a wonderful distraction. If anyone knows of another book I should buy to distract me in the next few weeks, do share please!!! 

So while I have sooooo much to catch up on, tonight I am going to rest. As much as I want to sit down and write. As much as I want to share all of the amazing pictures of all my babies with you, I have to allow myself to rest.  I promise that just as soon as I get caught up on my sleep I will be back with a vengeance. Next week is Paxtons heart cath. I will be posting and asking for prayers as we near that and of course I will blog and tweet (on the left side bar on the bottom) updates on how he is doing.  The older two boys are awesome and I have just precious pics to share with you. So continue to stop by and see if I have gathered up the gumption to get back on track.  

post signature

Thursday, February 18, 2010

BRING IT!

First off I would like to thank my readers who continue to fill me up with their encouraging comments.  I have been contacted personally by more than a few of you. Many of you whom I had no inkling were even reading my random thoughts and feelings. It more than fascinates me why someone would stop and continue reading about us when they don't even know us and yet I do it too. There are a handful of blogs I follow, big blogs mostly and a few personal near and dear to my heart blogs, and to know that I have people that I don't even know that have "stumbled" upon us and reach out to us is heart warming. Thank you. Each and every one of you who choose to stop by whether silently or otherwise.  I think our story is kinda neat and while this blog just started as a journal it has become a pathway to so many other things and I am just so grateful. 


I have always been known as super sensitive. If you asked my parents that question they would surely laugh, it is the many moments they have found me sobbing over something insignificant in my younger years that would lead them to do so, but then there was the time in high school after I just finished a run with my Dad and we headed home via the interstate. We pulled off at the exit to our house and there at the stop light on the side of the road was a homeless man and let me tell you he was homeless.  There again, I turned my head and started sobbing. I didn't want the man to see, but I was begging my Dad to give him money. He did not, instead we gave him food.  If I could have packed that man up and taken him home I would have.  Not a typical self absorbed teenager move I suppose (although I had many self absorbed moments, don't be fooled) it's just that I have always been sensitive. I don't know why. Many of us would say it is the hardships we have endured. I could say it was my Grandmas, the woman who was very literally my Mom, looong battle with leukemia only to lose in the end.  Or I could say that it's because my Mom chose to leave my 21 year old college going Dad alone with a tiny baby. Or watching my Dad (the man who raised me and stuck by me when most men would high tail it) cling to life at the not so ripe old age of 39 having suffered a massive heart attack on the side of the road after practice one day. Hearing that he died twice and was brought back to life twice via CPR as they waited for ambulances to arrive.  I could blame watching my Grandpa suffer through lung cancer and ultimately losing that battle for my sensitivity. 
I don't. 
Quite frankly, I don't believe in using our life's experiences as excuses for the way we are like so many people do.  While they may shape us, it our ultimate choice to learn from them or use them as a crutch.
I am sensitive. I always have been. I am willing to bet I was a babbling mess of a 4 year old crying over the stray kitty on the side of the street sobbing that we just had to take it home. Oh wait, that was me.  Life gives us what my Dad would call "curve balls" and when a curve ball comes he would say "HIT IT!" He did, I did, we do!  So while the tears are never ending at this point in my life. While looking at my sons smile will turn me into Niagara falls in less than a second. While hearing that Shaun White endured two open heart surgeries before the age of one this morning after watching him perform last night had me go through an entire boxes of tissues, it really is nothing new in my life. It's just I feel like I notice the ebbs and flows more than I ever have. I look at Paxton and think "old soul" I look at Austin and think the same. It's no wonder, they say the apple doesn't fall far from the tree.  Being an old soul is awesome and while it requires many Costco size supplies of Kleenex, it always keeps you centered.  While I have had my fair share of fun, I would always come back to what really mattered in life. I attribute a tremendous part of this to my Dad who really ingrained that in my head. If I thought I had problems as a child or teenager, ironically he would say to me " there are children fighting for their lives in hospitals all over the world, now do you really think this is a problem." Of course I was no fool and the light bulb would go on and suddenly my problem was just a little silly speed bump.  Today, I have problems, but I can say through the hot tears that my problems are the best problems I have EVER been blessed with.  I was born an old, sensitive soul because God had a plan for me. I always wondered what my purpose here in life was, even until 2 years ago I wondered, because I wasn't sure if just being a Mom was good enough. I now know my purpose. I now know that the compassion I had for a homeless man on the side of the road decades ago was all leading me to my life today.  My life of living in a hospital many times over, watching people say good bye to their babies. Watching the suffering and still finding hope in this life.
 While this is not easy. The nightmares continue. The panic continues to set in. The tears ebb and flow as easy as I breathe in and out. I know NOW that I am here to be a Mom. A Mom to an insanely sensitive, super intelligent, sensory/speech/walking delayed little 3 1/2 year old who rocks my world.  A Mom of a wild, free spirited, fearless, kicking, hitting, screeching, love with all his heart little 2 1/2 year old. A Mom to baby Tadem in heaven who was sent to us to be his brothers guardian angel, and just in time = ). A Mom to the happiest, smiliest, half a heart, kidney refluxing into his ureters, feeding tube, 13 meds a day, bubble blowing, kicking, strongest, blue eyed, fighting man I know! I am a MOM and there isn't anything I would rather be.  It's what I have always wanted from the moment I had my first babysitting job, I just knew. God graced me with my dreams. He tests me. He pushes me to the edge and then reels me back in, but he gave me what I asked for, prepared me along the way and here I am! While I am facing the second hardest battle of my life along side my son. While I may not feel prepared, I am. I may cry, but that's ok, it's what I do and by golly if they aren't healing.  So while many times I feel the need to pick myself up by my boot straps and pull it together I know that it really is ok to lose it, because losing it has gotten me this far! So to all us sensitive, crying, "to emotional", get it together women out there, take it from me, there's nothing wrong with it.  It makes us so strong, powerful and appreciative.  Lord knows I would rather be all of those things than the opposite of them! 
Paxton, while Mama will surely still cry rivers, while I will still panic and never want to put you down; today I am feeling like we got this. You got this! You are my strong, fighting boy. Any time that I have doubted you thus far you have proven me wrong and how dare I doubt these next months! I love you more than you will ever know and I canNOT imagine my life without you or you with your whole heart, because your half a heart beats 95% of this worlds whole hearts and man that makes me sooo proud!  So here's to the next two months. Paxton and I say BRING IT! Lets get it over with and move on to bigger and better things!
Love you mean it strong boy!

post signature

Friday, February 12, 2010

There's A Reason We're The Wild Wild Wests


I like to call it.... Life with boys!

Cause why wouldn't the trunk of a motorcycle be good storage for Valentines Candy...
Pretzels in the nose. Naturally!
This is what I allowed in an attempt to get ready one day! (Notice the McD's diet coke in the background~my vice in life!)
Somehow scrubbing crayon off the mirror, counters and cabinets seemed worth it in order to get a shower and brush my gal darn teeth!

Climbing on the counter to eat the cheese off Mommy's casserole 
(um...McD's diet coke again, I may need to look into detoxing )


Somehow we managed to keep all our teeth and leave with no broken bones. Whew!

By days end, life with three BOYS has done me in!

post signature

Wednesday, February 10, 2010

Paxton Update

Well,  in the midst of one vomiting child, two hacking up a lung and zero sleep for Mama I did manage to get Paxton to his cardiologist appointment today.  As I mentioned in my post the other night, I have had a feeling that his next surgery is just around the corner and as intuition would have it, I was right.  For starters Paxton is a whopping FIFTEEN pounds! That truly is amazing for his age and anatomy. I almost fell over, I really thought he was hovering around the 13 pound mark, but I guess those koshies really are paying off!  He had an ekg and an echo done and all appeared well. His blood pressure is a little high, but we can't alter his medication any because it affects his potassium.  As soon as the doctor came in my stomach dropped, I just knew what was coming next.  He looked at me and said it's time to start thinking about the next surgery.  They like to do the Glenn procedure between 15 and 18 pounds. Since he is 15 pounds now, by the time the actual surgery is scheduled he will be a pound to two heavier so as he said...it's time.  Before the surgery Paxton will need to have a heart cath done. This is where he undergoes anesthesia and doctors go in through his groin with a camera and get a better look at his heart.  An echo can only tell so much and they don't want any surprises come surgery day.  This will require a trip to All Children's and an over night stay.  So we are going to Tampa this Friday for the cath consult and to get that scheduled.  From there we are looking at scheduling his Glenn in about a month.  I am a nervous wreck. While I know he will be much better off anatomically after this, I am terrified.  I am told his heart will not be working nearly as hard, which means we will not have to add calories to his formula and we can hopefully cut back/eliminate some of the 13 meds that Paxton gets in a day.  

Oh my sweet boy, we have a big couple of months ahead of us, but if anyone can make it through like a champ, I know that you can and Mama will be there with you every step of the way! 
I will update you with more details as they become available.  In the meantime, please continue to pray for our little man and all that lies ahead for him.  
I have lots of updates on the older two boys that I can hopefully get to tomorrow, when hopefully our children wake up healthy and vomit free.  In case you were wondering, this is round two of sick children in the house this month and by the grace of God, Paxton has remained illness free.  
So, while I have been feeling sick to my stomach all day, I am trying to prepare myself for the weeks ahead.  It's what he needs to be here with us, so it's what we will do.  I thank you all for your amazing comments, emails and for reaching out to me with prayers and your own stories. It means so very much to hear from our readers, so keep it coming.  
Until tomorrow,  ya'll get a good nights rest!

post signature

Monday, February 8, 2010

I don't know what to title this...

I started this post earlier today with an entirely different title and theme in mind.  As life would have it,  that has been postponed and I am going to once again be raw and real.  I have been reveling in how amazingly well Paxton has been doing and keeping my focus on that as best I can.  So, today when we were outside in the driveway for a little play time and I noticed his lips turning blue, I jumped up to assess him.  I ripped his socks off to see completely blue/purple feet.  I ran him inside to get a better assessment of him.  While he was pale, blue around the mouth with a low heart rate (for him) his oxygen saturation was normal (for him) I took a deep breath and tried to refocus. I got the boys in and ready for dinner, we settled in and got ready for bed.  I hadn't realized quite how deeply the event struck me until I went to rock him to bed.  I just started sobbing. I held him to my face and smelled him, sang to him and loved him. We must have sat there for over an hour.  He listened to me and eventually fell asleep. I just couldn't put him down. To many things were running through my mind.  To many what if's. To many scary thoughts.  I have done this here at home to this extent only a handful of times.  Tonight, was harder than I can ever explain. As I rocked my youngest son in the dark, I was overwhelmed with what lie before us in just a little over a month.  I have fallen so deeply in love with this little man who fights to be here with us every single day and I cannot imagine a day without him.  It's not a road I want to think about, but the reality is he will be having open heart surgery and the fear that envelopes me is paralyzing.  So tonight I melted.  Melted like I melted when I found out he was sick in utero.  I remember the night that I sat in my shower with my big belly and let out all the fear that I may never meet my son or that he may die shortly after birth fall out in waves of hot tears.  Today the tears were tears begging God to keep him safe and here with us.  I begged God to please allow Paxton to continue teaching us all not in his passing, but in his living.  For he is such an AMAZING teacher.  While I know all the worrying in the world won't change his ultimate destiny, I look at him and the worry washes over me come hell or high water.  He is a part of me. He is my life. How do I not worry. How do I not panic. So I allow myself the meltdown that I need.  Trying to push it all aside only makes it worse in the end. So I cried the ugly cry and allowed myself the time that I needed.  I prayed and even begged, but whatever is meant to be for my little man is meant to be. I will spend every precious, God given moment smothering him in my love and every moment aside from that praying that God allows him to come out of this stronger than ever before.  While the tears flow freely tonight, while the overwhelming powerlessness I feel paralyzes me I HAVE to trust in his purpose here on Earth. He was born and continues to thrive each day to show us what a miracle truly is.  I have to trust in that...




God give me the strength to accept the things I cannot change...

post signature

Wednesday, February 3, 2010

When You Least Expect It

AMAZING UPDATE AT THE BOTTOM (bring tissues):


So yesterday, I made a new friend, when I least expected it.  I was merely sitting on the couch feeding my man and thumbing (literally) through emails on my i phone when I noticed one from a sender I had never seen before.  So I opened it and what lay in front of me brought me to tears.  It was from a DAD blog reader that had the courage to reach out to me in his time of need.  You see, he and his wife are pregnant and have a heart baby as well. Their struggle has been long and arduous thus far only to learn that they have an even longer road ahead. His email spoke volumes for the place he and his wife are at right now, I have been.  The places they are headed, I have been. The feelings they are having, I have felt. When we see the two pink lines show up telling us we are pregnant, we never imagine that it could happen the way that it has happened to me, to my new friend and to the millions of others in the midst of a health struggle now.  Sadly, I can admit, I never knew much about heart babies until it was happening to me.  Now, I know more than I ever imagined. My Aunt says I have become a nurse as she watches me give my son his 5 meds through his feeding tube.  It's a ride nobody asks for. It's a ride I wouldn't wish on anyone and yet it's a ride that has made me the person I am today. My friend Eileen and I were talking just the other day about how much I have changed as a mother since Paxton's arrival.  I had it all together before. I prided myself on an all organic diet, on having everything in it's place. I never forgot a diaper, wipe, paci. Beds were always clean and fresh, clothes folded just so. Yet just the other night I  was over at her house and realized that I had no diaper for Paxton and she looked directly at me (which is why I love her so, because she tells me like it is) and said "you would never have done that before Paxton". It's so true.  I had it all together.  Today, I have nothing together and I am ok with that.  What matters is that my kids have time with their Mommy.  The laundry can pile up to the ceiling (and trust me it does), but I can say that it's so worth it. I have Paxton to thank for that. He reminds me that what's important in life is not a perfect house. It's love, kindness and strength.  He really showed me how to let my hair down. Every day I wake knowing just how precious and fragile life really is. 
 Yesterday when I heard from my new blog friend for the first time I had such a moment of clarity that Paxton's struggle is not in vein.  My honesty on this blog is not in vein.  If Paxton's story can help one person, then he has made a difference. Clearly he has taught our family and friends many lessons, but to be able to reach and inspire people across the United States that we don't even know, is heart warming.  I am asking all of my readers to please take just one moment from your day and pray for my new friends baby.  He is not born yet. He will be arriving right around the time that Paxton under goes his second open heart surgery and his story is similar to Paxton's. As I have said so many times before, the power of prayer DOES work.  Paxton is living,  yes living, proof of that!  So can we please add baby "T" to the prayers we send out for Paxton.  All of these little heart babies are so special and each little one is connected in their struggle to be here with us. So just as we pray for Paxton, lets pray for his heart brother to make it into his Mama and Daddy's arms. 
I thank each and every one of my readers who leaves a comment, who reaches out, who shares their story or simply stops by to check on our little man. I just love hearing from you all and hope you will continue to do so.
It is through this blog that I have come to know some of man's greatest struggles, deepest fears and joyous of joys.  

UPDATE:
No sooner did I finish this post that I received this email: (thank you Matthew for allowing me to share)

GOD IS SOOOO GOOD!


You want believe this. This morning we had to be at the cardiologist at 7:45 for ultrasounds. Long story short, Tapp Allen’s body has absorbed the tissue in his heart that was causing the problem. God has called a different play. He will still have to have open heart surgery, but they will wait until he is 5 or 6 months old. As of right now Polly(my wife) will have a normal delivery and he will come home with us-without any monitors or anything. Obviously, we are still heartbroken-but so excited. Sure you can write about my email. You can use our names and anything else you want. Maybe somebody else is going through this and will stumble across your blog like I did and become encouraged.

 

When I got home last night I told my wife that I had sent you an email and that you responded right away. I read aloud all of our correspondence to her. We both cried like babies, felt awesome about each other and where for the first time-comfortable and ok about “running this play.” Little did we know that just 12 hours later we would be told incredible news. My friends just don’t understand, they are still so upset for us. There like “well he still has to have open heart surgery right?” I’m like “yea- but don’t you understand he will get to come home with us.” Obviously, they don’t understand that there is a little boy named Paxton who didn’t get to come home right away with his parents.

 

You think it’s crazy that I prayed for Paxton last night and you prayed for Tapp Allen, we don’t even know each other and my situation has improved 10,000 times? GOD is good. Did anything amazing happen in your life over the last 24 hours?



post signature

Tuesday, February 2, 2010

Checking In

Dear friends,

I cannot even begin to explain my exhaustion at the moment. As you may or may not know, running has been a hobby of mine as long as I can remember. As my Dad would say, still not sure how we find pounding the pavement FUN, but we've decided it's because it feels SOOO good to stop! I was on hiatus for quite some time because  every time I turned around the last 3 years I was pregnant. Such a blessing and while I miss my big round belly, it is time to get my body back! SO, now that I am NOT with child and after running the half marathon with my sister I have been running every morning at 5 am with my Dad and his cross country team.  So, not only do I have to get up with Paxton in the middle of the night, I am also up at 4 am to feed him quickly so he doesn't wake while I am gone, get ready and bolt out the door to be at practice by 5 am.  E.X.H.A.U.S.T.E.D but so worth it.  It's next to impossible to get a work out done in the evenings around here with a husband and three kids to tend to.  So, mornings are really my only option and it feels so good to have it out of the way. I don't think about it all day and that is such a relief. Tonight though the wee hours have caught up with me and I am going to hit the sack, I just wanted to check in and let you know that we are here and doing well.  I had the most amazing thing happen to me today and I just cannot wait to share it with you, but it's not something I want to rush writing so I will update tomorrow at nap time! Please check back in.   Night all!

post signature

blog archive

Search This Blog

My Peeps

Visitors