Friday, April 30, 2010

My Wish

I have for whatever reason been reminded the last few days just how far I have come in this life.  It started yesterday as I was driving around, alone which is rare, and had my i phone blaring it's downloaded songs. We all know I have a love of all things rap and r&b.  It's always been there. I find it quite impressive how the singer can get the lyrics to flow like they do and I always find the beat to be somewhat electric, it makes me smile and start to dance.  I also love, love, love country music. Odd combo, I know.  However, country music has been pushed to the wayside since we had the miscarriage and lost Tadem.  


He, by the way, would have been one year old on April 21st...
 
And I bet his birthday was far more amazing in heaven than anything I could ever have given him here...

I haven't been able to hear more than the first line of any country song without immediately switching the station because the tears instantly well. Country music strikes something within me.  I am not talking about the twangy ridiculousness that country used to be known for. I am talking Rascall Flatts "My Wish" kind of music. That song is the one I have dedicated to my boys and they each have a copy of the CD in the Mommy memory boxes that reside in their rooms.

 Listen to it, surely it will strike something deep within you. In any case, I have not been able to bring myself to listen to anything other than rap music for a long time. You see, it doesn't hurt. It makes me smile and dance and sometimes actually laugh because rap can be ridiculous. The other makes me tear up. Reminds me of where I have been. Makes me begin to ponder.  Many, many country songs hold memories for me.  The likes of trying to find myself in this world type memories.  So, I shut it out. Unable to handle the tears because life goes on and I must keep it together, but yesterday as I was driving alone, my i phone must have known I was ready because it randomly skipped to the song for my boys.  I immediately started reaching over to turn it off and stopped. I let it resonate with me.  It hurt a little only because so many feelings began to resurface and then suddenly I began to sing. Then belt it out not caring who may be beside me watching.  It felt good. It was nice to hear the words that ultimately describe life and what I want for my kids, my husband, anyone close to me and myself to appreciate about it.  Once that song was over, I listened to another one and then another. Each time singing my heart out. Grateful that I am back. It's been a long time, years actually and I missed it.  I miss the stirring of my heart strings when lyrics like " I hope you never look back, I hope you never regret and you help somebody every chance you get." 

How could you not love that...

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Today I am alone with all three boys. It's Summer. I have never had a Summer with all three of my boys.  I realized as I stood in the garage watching them splash water all over in the driveway to cool off the heat that pounds Florida this time of year, that last Summer I was doing the exact same thing, but with a Paxton in my belly.


 I was oblivious to the road ahead.  While I worried about impending miscarriage since we had just lost one, what I didn't realize then was that God had a much, much bigger plan in store for us.  A plan that literally knocked me off my feet, brought me to my knees, sobbing and begging for mercy.  He did not give in. Instead he gently kept his arm around me the entire time and showed me the way.  I was tested more than I could have ever imagined. I learned what strength really is and just how strong I really was.  Last Summer at this time as I waddled around our driveway drenched in sweat anticipating the arrival of what I thought would be our perfect little baby was when I thought I knew what perfect was.  I was so very, very wrong.  Perfect is not what we think it is. Perfect is anything but. Perfect is crying to heal, yelling to release, on bended knee to soothe. Perfect is falling down and getting up, fighting every step of the way even when you don't think you can fight anymore. Perfect is a little 18 pound boy that smiles morning, noon and night in spite of the scars that cover his chest and belly. Perfect are his big, blue eyes that show me he knows more than I even do, so wise.  Perfect is hearing his belly laugh telling me "I got this Mama".  Perfect is having three beautiful boys in my driveway this Summer. All of us sheened from sweat, splashing through the "river" of water that pools in the bend where the driveway meets the road. Smiling and laughing.  Reminding me just how far one year can bring you. 

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Once inside, all of us pruned and snuggled on the couch, the doorbell rings.  It is two packages. My heart stops. I already know what they are. I have been waiting and yet not ready at the same time. I don't know that I can explain why.  She has been a part of our journey since before Austin arrived.  She has taken all of my maternity, the boys newborn and our family pictures. By now I know the infamous red boxes.  

I have never been nervous to receive them.  I brought them in and waited for the boys to nap. I knew I would need a moment when I opened them.  They are beautiful and the story that is not yet over was shining through on the photo paper that lie in front of me.  I began to cry.  Again reminded how far we have come.  We took these photos around 3 months of age, Paxton is days shy of seven. His birth announcements and birth pictures arrived today.  For a long time, I would try to pick which ones I wanted and I couldn't. Each one seemed to hold a piece of the puzzle. Each one a different emotion.  So I would email Terrilyn and tell her that I couldn't do it just yet and she would tell me whenever I was ready. Oh' this journey. The surprises along the way never cease to sneak up on you.  The lessons ebb and flow, but always continue.  For that I am so thankful. As I sat at the kitchen table tears streaming my face over the pictures of this little man that is my son, I may have never been so thankful in all my life.  He was given to me. I was graced with his presence in my life and this journey just keeps getting better and better. These pictures were taken at a time when I spent every moment of the day worrying we would wind up back at the hospital. He was not stable. It was a blessing we were home and my days were filled with blue feet, blue lips, oxygen saturations and the likes.  I constantly worried something would go wrong.  I remember Terrilyn emailing me the photo proofs in color and black and white. She wrote in the email that the last handful of pictures were only available in black and white because he had started turning blue and there was no way to edit that in the picture.  The funny part is behind the scenes we had blankets and space heaters running in an attempt to keep that from happening, but blue he was. Today, I am different.  I worry, of course, I will always worry. I no longer fret. I no longer allow it to consume my life. Through prayer and a whole lot of help from my husband and friends I have learned that whatever is going to happen is going to happen so why not enjoy the time in between instead of worrying it away.  Thus far, God seems to have a special plan in store for Paxton and while we are unclear on his conclusion, we most certainly know that he has chosen to make him one of the strongest people we know.  He has been fighting the good fight since he made his entrance into the world. 

 Time blends things together and moments like a song playing by surprise, a driveway day or a good picture have the ability to stop you in your tracks and allow you to take stock of life, it's journey and how damn lucky you are.  



Priceless ; )

And I am damn lucky my friends. Damn lucky!  

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Monday, April 26, 2010

When You're At The End Of Your Rope

Tie A Knot And Hang On!


Whew. It is good to be home, but to say it's been easy would be a lie. Paxton has a lot going on right now.  He isn't sleeping. At All.  He is up every hour and a half to two hours.  I am guessing he is adjusting to the new blood flow from his surgery. Probably still has headaches from this and given that he is still scratching his head I am guessing it hurts. He also has one of his upper front teeth coming in. To top all of this off he is sick with a cold and the amount of snot this child is producing would win medals.  I can't pick him up under his arms for six weeks as his ribs are still healing and are only held by wires, this is difficult since we all know a good Mom whips her kids onto those birthing hips from where else but under the arms.  He can't go in his jumper, which he loves because I don't know how to get him out except by picking him up from under his arms.  Poor little man is probably a little bored to say the least and Mommy jumping around like a wild woman is only funny for so long.  He continues to smile at his brothers in awe. They really are the cats meow to him and they love Paxton just as much in return. 

The kisses are constant

(taken with my phone so kinda crappy)
 
and Austin now gets his bink if he cries and not so gently shoves it into his mouth in an attempt to help him feel better. Lucky for us Paxton has had open heart surgery twice so not to much bothers him.  I can NOT wait until Paxton is in the thick of the chaos that an almost 3 and 4 year old bring. We have spent our days back at home enjoying our friends, grilling and playing outside. The boys are in hog heaven with company to play with and my cup runneth over seeing the joy on their faces!



Little sleep and bags under the eyes or not, life is good!  We are home and we are happy! There's just no where I would rather be than with my babies.  I realize as they run about leaving toys in their wake, stripping down to run around naked ( I hear this is normal with toddlers...) screeching at each other, climbing, jumping, trash digging, getting into mommy's make up, mess making boys that these are the days!  This is what it's all about! This is why I can barely return texts, definitely don't return phone calls, emails...not so much. It all goes to the wayside because these times with my children take precedence over it all. This is what I have wanted all the days of my life and I am soaking it all in. I hope ya'll understand. It's nothing personal, it's just that three boys take up nearly all of my time and I wouldn't have it any other way!  I will have all the time in the world years from now. So rain check please ; ) I'm going to snuggle with this:

Thank you all for the prayers for our son! They worked once again. I am working on a special Paxton post but all the pics to upload take time and again... I don't have a whole heck of a lot of that ; )

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Thursday, April 22, 2010

We're Home

I haven't posted in a couple of days because Paxton and I are home and the only thing I want to do right now is lay on the floor and let the boys romp all over me.  I am in heaven here at home with the loves of my life.  I have so much to talk about. I have so many things on my mind, but come days end I am beyond exhausted. I am definitely not caught up from the broken sleep of last week in the hospital.  Paxton is doing well, although a little irritable which I am attributing to the "Glenn headaches", he's happy as a clam to be here at home.  I will check back in this weekend with pictures of my loves and to share some thoughts filling my heart and mind since our return.  Until then I leave you with this picture of my angel, my fighter, my rock star, my heart.



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Tuesday, April 20, 2010

Our Little Man's Second Journey










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Monday, April 19, 2010

Really Though...How Does He Choose

Today has been an emotional day for me.  It's like I held it together all week and now as my son's second open heart surgery journey comes to a close, my emotions took over. It's pretty cool how Mama's can keep it together when they really, really need to only to lose it when things are all said and done.  As always in hospitals, you meet so many people. Some doing better than you and some doing much worse.  If I had a dollar for every time one of the nurses, doctors or parent/family member of another child said how Paxton looks so amazing we would be rich. For being a single ventricle baby, Paxton really and truly has made this all look like a cake walk.

From the moment I found out how sick he was, I prepared myself for the absolute worst and anything better than would just be a blessing. I have waited his entire six months and even still wait for the ball to drop.  How. How? Is it that my baby boy is doing so well when so many others are struggling, have struggled or worse, don't make it. I know I will never receive that answer, but it matters to me. It matters to me when I walk down the hall and see a Mama crying not knowing how her journey will unfold.  I remember being exactly in her shoes. I remember not being able to see or dream about the future. I remember worrying every second of the day.  It hurts me. I want to express so badly that there is life with HLHS. There isn't life after because HLHS never goes away. There is no "cure". There will always be medications, doctors visits and restrictions.  It is what it is, but there is a point where you become ok with it. Where the meds become second nature. Where oxygen saturations become a mere glance at the monitor instead of eyes glued to the screen, heart pounding out of your chest at every alarm. There is life with HLHS. I know this.
What I don't know and never really will is...how does God choose.
How is it that I have two beautiful, perfect boys at home and a third right here beside me who may have half a heart, but is essentially perfect as well and others don't have even one.  It hurts me for them.  I want to fix it, but I cannot.  I have spent time pondering if Paxtons diagnosis is worse than others. Would I rather have this than that for my son... Weird? Maybe. But I think when you have a special needs baby you spend a lot of time pondering things like that.  You know, as my friend Matt says, that there are others going through so much worse than what you are.  You know that some babies have cancer, have their chest cut open multiple times, have diagnosis that are uncommon and leave parents up in arms about where to start and how to help.  It's life. As I like to say, it is what it is, but that doesn't mean that I didn't spend today in a heap of tears over life and the lessons it presents us with sometimes.  As many lessons as I have learned through Paxton, the one I am still working on is complete and total trust that all of this is for our greater good.  I can see the rainbow in this journey with Paxton, but if this journey had taken a different direction, I don't know that I would be able to see that rainbow. For those who can, they are truly amazing.  
As I spend this last night in the hospital with my son until his next open heart surgery I am just taking in this entire week. The people I have met along the way. Their stories.  Their hopes and dreams spilling down their cheeks. The fear written all over their faces. It's a tough, tough journey, the hospital life.  You see good, bad, ugly and hope.  You see the work of God in these doctors and nurses. You see the work of God in these children that live their lives getting poked and prodded and yet continue to smile and laugh.  So while my heart is heavy tonight for life and all that it is, I look over at my sleeping boy and allow myself joy. Joy that he is ok. That last Monday at this time, I was tossing and turning in a hotel bed waiting for 4:45 am so I could get up and get this second leg of the marathon over with.  Unsure at the time, how it would play out. 
I stand, once again, on the other side of it stronger, wiser, maybe a little sadder, but also a lot hopeful.  Sad because life is messy, and hopeful because life is also wicked, wicked beautiful!!!




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Friday, April 16, 2010

Were Movin On Down!

Step down unit here Paxton comes! Oh yah!  He's got it like that!

We are being moved over to the step down unit later today.  In a mere 3 days Paxton has gone from this:

To this:


A work of God, my little man is.  Truly and honestly, he blows my mind. Some would say why are you posting a picture of him in that condition. I say because no body can grasp all that he has been through unless you are in the thick of it.  This picture takes my breath away. He is six months old and this is the second time he has gone through this. I post this picture because my dear friends if you think you are having a bad day. Look at this baby.  If you think you've got it bad, look at this baby. Then look at how he has recovered in 3 days. My son, could teach the entire world a lot about happiness, fight and spirit!  He has every reason to be a cranky baby and yet look at him.  He teaches me every day to remember what is important.  There isn't a whole lot he gets upset about. It's like at 6 months he already knows not to sweat the small stuff and at 30 years old I strive every single day to be just like my son!
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The medical update:
Paxton is off of oxygen and breathing room air at exactly the rate he should be. Between 80 and 85 percent saturation. Healthy hearts saturate at 100 percent.  This will always contribute to him tiring more easily.  He had his chest tube pulled.  Two very big lines pulled and he remains with only one central line.  He is tolerating feeds, while not as much as before surgery, he is still eating a good amount.  He is on zero i.v. medications and if you look at my last post, that in and of itself is a miracle. His lungs are still really wet, the doctor is actually surprised by this. Most babies would have cleared by now. They are not going to put a chest tube in, but rather continue watching it as it has not gotten any worse, it's just not gone either.  As I write this, he is passed out snoring, such a beautiful sound when I think of where he was just 3 days ago.
We will be moving to the step down unit later today!  Step down unit is the last step before home. That's not to say we are outta here tomorrow or anything, it just means he's not nearly as critical, which is awesome! Because Wednesday he was still critical!   Before long, I just know he's gonna bust outta this joint and we will be on the journey home, with two open heart surgeries under his belt and a whole heck of a lot of love surrounding him and the world as his oyster!





I will keep you updated!
A big thank you to Nana Kimmie for all she has done for our little man! I'm pretty sure she's ready to run away with him forever! She loves him so much ; ) She has also allowed me to go get some rest and gets whatever I may need so I can be here with Paxton.
Thank you also to my BFF "Eyeween" for taking the older two boys while Dave was up here for Paxtons surgery and recovery.  The boys are pretty much ready to pack up and jump ship to be on yours they had so much fun!  Knowing my other loves were taken care of meant so much!


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Thursday, April 15, 2010

Right Where We Belong



What a sweet, sweet day!

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Wednesday, April 14, 2010

My Hero

Yesterday after surgery we were able to finally see Paxton around 2 pm.  He was still out from anesthesia so we stayed a few minutes then went to go grab some lunch. By the time we returned he was a mess. Lots of crying, moaning and irritability, not so much from pain as he was on so many pain meds I'm not sure pain was possible, but more from the effects of a LOT of morphine and versed. I think he was a little freaked out by how it made him feel.  He was also experiencing what they call a "Glenn Headache" (the bi directional glenn is the name of his surgery) and the headache is caused by the repair the surgeon made to his heart to allow more bloodflow in the upper part of his body instead of the lower.  The blood now drains from his head into his lungs and sends oxygenated blood to his heart.  The headache was intense and that paired with the amount of drugs he is on just really threw him over the edge.



 The nurses suggested I go home and rest for the night while he was still out of it because he would be more alert and coherent tonight so I did. I went to the hotel with my husband and spent some time with him since he headed home today to take care of our older two boys. This has been exceptionally hard on him and it breaks my heart.  Nana Kimmie stayed with him through the night and took care of business! ; ) He even began eating.  Which is amazing! He is most certainly swollen in the head, face and eyes. This is due to increased blood flow to his head that was not able to happen prior to the surgery.  This morning he was really itchy and flushed as if he had a sunburn which is a reaction from the morphine so he received some benadryl which has worked better to sedate him than all the "big guns".  He had a relatively quiet day. Opened his eyes. Ate some more.  We did find out he has fluid around his left lung. It came as shock, but they are watching it closely. We upped his lasix (a drug that removes fluid from the body) in hopes that it will rid with that, if it does not he will need another chest tube to drain the fluid from around his lung.  We are hoping it doesn't come to this, but will not know until his chest x ray in the morning.  There had been hopes of removing quite a few iv lines and his chest tube today, but we did not do that due to the fluid, which also means I was unable to hold him. It's hard to have him look at me with those big blue eyes and not hold him which I know is all he wants.

We continue to remain in awe of how stoic our boy is. He teaches us every minute of the day what strength really is.  My heart overflows with love for this child that I have been blessed with. He is truly...MY HERO!


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Tuesday, April 13, 2010

Surgery Updates

UPDATE: 12:20 pm-- Paxton is OUT of surgery! 4 Hours! Very routine procedure. His surgeon is very happy with how things went. They are setting him up in the PCICU and we will be able to join him in about half an hour.
PRAISE GOD!!!!!

UPDATE: 11:00 am--The surgeon is now through all of the scar tissue. Paxton is on bypass and they are working on the heart repair now. Please pray! Our little man is so amazingly tough and strong! I just want to see his beautiful face! The wait should be considered a form of torture in my opinion!

UPDATE: 9:15 am--The nurse just came out and said that his iv lines and central lines are placed and his surgeon is beginning to cut through his scar tissue. Will update when he hear more!

7:43 am--They have taken Paxton back to begin surgery. Now is the time to pray my friends! I will update when we hear word of anything!

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Monday, April 12, 2010

Our Little Rockstar

We spent four hours in pre op today. Ekg's, blood tests, chest x rays and the likes.  It seemed to go on forever yet our baby boy handled it like well... a rockstar! He has every reason in the world to be a cranky, crabby baby only he is the complete opposite. He smiled, talked and flirted.  He continues to show us what happy truly means.

We met with his surgeons assistant because his actual surgeon was in an emergency.  We get that.  I spoke to him on the phone tonight at length about plans for tomorrow.  There were some big concerns about moving forward because they forgot to tell me to discontinue his aspirin when they called to confirm his appointment. Aspirin thins the blood and he is being cut open tomorrow. I was beyond livid. In fact, I don't think my husband has ever seen me so mad. I just couldn't believe such a critical thing was forgotten. We have uprooted our lives in preparation for this.  In any case, after talking with his surgeon (whom we love) for some time on the phone it has been decided that we will move forward with plans for surgery tomorrow. He is not worried because the dose he is on is so small. This is not to say that I am not still terribly nervous. Talking to him took the edge off, but quite frankly I am still pretty pissed they forgot such a critical piece of information and I am a wreck that any amount of aspirin is in his system no matter how small the dose. Will you all please specifically pray that there is no trouble with bleeding tomorrow?
We will arrive to the hospital at 6 am with a hungry little man on our hands. He is NPO after 1 am and it's clear Paxton doesn't miss any meals and if he's anything like his Mama he will not be happy about this.  Surgery will start at 7:30 am. It's so hard to wrap my head around the fact this is happening in hours. I am exhausted, scared, running off adrenaline and wired all at the same time. I feel like I am aging by the minute. Surgery will be about 4 hours if all goes well.  I will update when I can. I mean it's not like I will have much else to do while I sit there begging God to let Paxton be ok and wishing time would speed up.  I feel so out of freaking control here. It makes my stomach twist and turn. I feel like I could puke every minute of this day.  
It is out of my hands and so I have to just hand this over. I will hand this over. I pray and pray and pray that my baby boy will be ok. I pray that tomorrow night at this time the surgery will be behind us and healing can begin.  If that happens there was talking of getting his g-tube (feeding tube) out before he goes home.  That would be so awesome and another hurdle jumped for our little man.
It's time to try and get some rest.  Thank you all for your prayers and comments. They lift me up and remind me that our son is so very loved.  I will do my best to keep all of his prayer warriors (you all =) in the know!

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Sunday, April 11, 2010

Were Here


This weekends mission was a hard one. I had to pack what I thought was necessary for Paxton and myself for however long we may be here.  I don't really have access to a washer so I packed a lot.  I had to prepare the house for my departure.  I had to prep everything for my older two boys. Get groceries, pay bills and the list goes on.  When you are preparing to leave your family and watch your child endure his second open heart surgery, the last thing you can even concentrate on is bills and food.  In any case, I did what I had to do. Slowly no doubt, but it got done. I spent the greater part of the weekend waxing and waning through the sobs.  I would look at the two most amazing, kind big brothers of Paxtons and the tears would simply fall.  I just love them so much and leaving them without them really understanding why I will be gone for so long kills me.  Again, I did what I had to do and climbed in the car, cried the ugly cry and then I put on my big girl pants and focused. I have fantastic people caring for my boys and I know that they will rebound from this just as they did last time and God willing we won't be here for nearly as long.

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So this morning my best friend stopped by to trade cars with me because she is taking mine so she can cart all my kids around while Dave and I are gone. When she showed up she had her arms full of goodies for me from my Thursday playgroup girls.  I just can't even begin to express how them thinking of me/us and planning a care package meant to me. I have waited a long time to find an awesome group of Mom's to hang out with. Those girls showed me two weeks ago just how awesome they are and again today.  I have Eileen to thank for forcing me, literally, out of my super shy shell and making me take the plunge and go to playgroup for the first time.  I am so glad that I did and so are my boys! Thanks girls! We will be back with a vengeance in now time!

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So as most of you know we have a very long week ahead of us.  I am feeling ok as I write this, but that will probably only last til I wake at 4 am unable to fall back asleep.  The quiet still of night makes my mind wander. It scares me and does not allow me to be rational.  We are at the point now that it's sort of full speed ahead from here. My heart races as I type that last sentence.  Tomorrow we will go for all of his pre op tests. We will get a time.  A time in which we will have to hand this over to a power much larger than ourselves.  A time to breathe deeply and pray. A time I have been dreading for months. At this point I am ready to get it over with, get him healed and home.  So full speed ahead it is.  People have asked how they can help and all we ask at this point is for prayer. Lots and lots of prayers to wrap my son in as he continues with his fight for life.  All the prayers worked to bring him from my belly to this Earth, through open heart surgery at 4 days old, and two months in the hospital healing.  They worked! God hears us so keep them coming my prayer warriors and know that we are forever grateful to you all!  

(Taken with my phone while on my lap so it got a little tricky, but the smile is truly priceless)

I will update soon!
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Thursday, April 8, 2010

Easter 2010

Lots of things have been going on here at the West house.  Easter was so much fun with two little boys who have clearly begun to understand holidays and what special treats might be in for them.  It melted my heart to hear their fat feet slapping the tile as they searched the house still groggy from sleep for the Easter baskets that were left for them.  



Watching the joy on their faces as they searched the yard for hidden Easter eggs with their friends. Running as fast as could they could to get them all. Sometimes stopping to crack one open for a jelly bean or two.  Or realizing that Mason dove into a chocolate easter egg so quickly he forgot to take the foil wrapper off (cringe...) 

Oh to be an innocent child again where counting candies was the mission for the day.


We gathered for family pictures, the likes of Paxtons next surgery looming before us made me feel an intense need to get us all together.  The mission was a tough one, trying to get 5 sets of eyes staring at the camera all at once was not easy. 

Then again, it's the moments unplanned that make for the best family photos.  The raw love a Mother has for her children is nearly palpable.



How freaking blessed am I...

God never gives us more than we can handle and this Easter I realized that I am pretty honored to come to the realization that not only does HE feel that I can handle three boys, HE also feels that I can handle one of which is pretty darn sick.  I feel proud. When I look at these pictures I realize we are all right where we are supposed to be. I realize that while we are most certainly not a perfect family, we are pretty darn amazing.  We don't give up. We fall down, but we get back up. Together, we can do anything.

Happy First Easter Paxie. Happy Third Easter Moo Moo, Happy Fourth Easter Austi and a Big Happy Easter to my husband who continues to help guide me through this journey.  

I wonder where we will be next year at this time...


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Wednesday, April 7, 2010

It is early morning.  As exhausted as I am, as much as I know I should be sleeping, I can't.  My mind just will not shut down. Paxton is now sleeping with me in our bed instead of his cradle and I find myself just staring at him. I kiss him constantly and he shuffles and sighs in his sleep when I do. I am hoping if I just come to this dang computer that has been here for me from the day we found out he was sick and let it all out then maybe my mind will rest. I am terrified. I know this isn't the worst of the three surgeries, but it is still open heart surgery. I know recovery is said to be quicker, but I cannot stop the what if's. Paxton has me wrapped around his little finger like no other.  I can't explain the dependency that is there when you have a sick child. I can't explain how not knowing if we would ever see him be born makes you never take a moment for granted. How knowing that one day at a time is all you really have. I am told he will be significantly stronger after this surgery. He won't be nearly as blue and he will have a lot more energy. I am happy for him to feel better.  He is so extremely stoic, my little man.  He only melts around 7 at night and I am guessing it's because he is due for all of his meds at 9 and just starts to not feel well come then. He is the epitome of strength and that blows me away. How did I get so lucky to be blessed with this amazing little boy...He teaches me so much every day and when I look at the one dimpled smile that spreads across his face every time he sees me, I think this can't be over yet. Paxton has so much to give and he will be just fine. While I clearly can't stop the thoughts that cloud my head and scare me out of my whits, I try to keep it together for my other two boys and for my husband.  We have big plans, our little family and Paxton will be right in the thick of them. He has to be...


What a gift.  

What life lessons.

What a purpose.

What strength.

What overflowing pride.

What all consuming love...


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Easter post coming soon, I promise, cause I know ya'll are on pins and needles waiting for it ; )

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