Friday, May 18, 2012

sleep...or lack thereof...


sleep

[sleep] verb, slept, sleep·ing, noun
verb (used without object)
1.
to take the rest afforded by a suspension of voluntary bodilyfunctions and the natural suspension, complete or partial, ofconsciousness; cease being awake.
2.
Botany to assume, especially at night, a state similar to thesleep of animals, marked by closing of petals, leaves, etc.
3.
to be dormant, quiescent, or inactive, as faculties.
4.
to be careless or unalert; allow one's alertness, vigilance,or attentiveness to lie dormant: While England slept, Germanyprepared for war.
5.
to lie in death: They are sleeping in their tombs.



I can't believe it's been nearly  a month since I have posted. Incredibly unlike me.  However I have spent these last weeks grasping at straws...trying to keep myself afloat/awake/fromstandingonamountainscreamingmyfaceoff.... as luck would have it there are no mountains here in Florida to stand on top of and scream from.  I could go to the beach, but that would just get awkward with all the "tourists" staring.  I am tired guys.  I kept telling myself for so long if I could just get through that last surgery of Paxtons all would be well. And in truth, all is well, but no sleep is a pure form of torture and I am currently in the throes of it.  I cry. I yell. And then I cry some more. There are simply, not enough hours in the day. I have three boys 5 and under. BOYS.  I don't stop. Ever.  And for that I am grateful, however I would not be against someone kidnapping me off to a hotel to sleep for 72 hours straight. Of course I would have to be drugged because as soon as I leave the boys I feel the immediate need to return so please drug me should anyone feel so inclined to take me up on this. 

I know that this too shall pass, that in a matter of weeks I will be belly up at Lake June.  My most favorite place to be. I remind myself during the "witching hour" when I think I will not make it one. more. minute that I will.  That I have.  If someone asked me what I wanted the very most right now, it would be to have someone take care of meeee..... I think all mommy's wish that to some extent.  We spend our days (and our nights~Paxton!!!) caring for our children that so often our needs get brushed under the rug.  My needs at the moment are quite simple, but I am finding even those hard to come by.  It's been two hellacioussss years and my motto was once we got through those it would be smooth sailing.  We're not there yet, but we are making progress.  First step accomplished... hospital free!  I lay in bed at night knowing how it could be and know beyond the shadow of a doubt that this...right here right now, is far far better than that.  For all the crying, exhaustion, not knowing how I will make it another days, I also know there is crying, begging to save his life, hospital exhaustion and that takes the cake for sure.  Having experienced that,  I can sit on this side of things crying on my dining room table because its only 3 in the afternoon knowing that 3-7 here at home is a far far different  3-7 than in the hospital. I wonder if that gift of knowledge will ever escape me...
 I also wonder if  I am making any sense at all right now...

I digress....

My boys are well. WILD and well.  My boys... I have always, always loved the sound of that.  And for the husband wanting a girl so badly  I just don't know what we would then call "our boys" with a girl in the mix.  Good thing I am to tired to give even one inking of consideration to his clearly mental request


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Paxton is off of his "nini"/pacifier.  He is an absolute terror.  He is EXACTLY what the nurses told me he would be when he was a newborn.  I'll never forget it. Paxton was about 4 weeks old and he had finally moved to one of the few private rooms available at the old hospital.  Our nurse who will remain unnamed due to his bold statement, said to me that day "these kids, these cardiac kids that spend so much of their lives in the hospital they come back spoiled brats for their Fontans, you wouldn't believe it." At the time I was shocked by his statement. Today...not so much.  Paxton West=Spoiled Brat. I can say that because I am his mom and I have spent the last two years of his life giving him every single thing he damn well pleased.  And guess who is paying the price now.... Erghhh....He says jump...I say how high...Or I used to anyway. Today I am trying to reign him back in and HE DOES NOT LIKE IT!  Truth is, it's hard not to spoil him. Even now. I simply have to lift his shirt up to remind me where he has been and in my heart I feel the least I can do is spoil him, but my mind knows it's time to teach him to be a little boy and with that comes discipline. He's got the manners down pat, that I have always expected, but discipline was a tad lenient if you will.  He spits his drink out ever so slowly just to watch it fall all over the floor, he shreds anything he can get his hands on, smears Desitin into the carpet, hits his brothers for no reason and thinks everything is his.  Then at 12 a.m. he comes toddling into my room all bedhead and smelling of sweet, sweet baby. He crawls up into my bed all "i wanna wayyy you mama"/i wanna lay with you mama and all bets are off.  He wins, I lose and by lose I mean, I usually wind up in his bed so I can manage a few hours without a foot to the ribs, as depicted below.  This is literally how he sleeps on me.


note the typical boy hand in his pants sleep position
 It's a slow, gentle process.  I can't just block out all he's been through and so recently at that,  so we take it day by day. He spends a great deal of time in his room and then I drop to my knees and stare into those eyes and don't know how I will ever be strong enough to let him go into the big world...
He talks like a 14 year old.  Telling me "fine mom fine" when I ask him to do something.  I ask him to go to bed and he says "I can't mom, I just can't"  and I laugh at how much he learns from his brothers. Siblings are like built in teachers man. It's cool. He will start school next year 3 days a week (halllellujahhh!) It will be hard, but good. I think he gets bored here with me when his brothers are gone.  He wants to be big so big he will be.


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Austin is "almost a grown up"  and flourishing in his school and OT.  His vitiligo is quite obvious now as Summer rolls her hot self in and he begins to tan. He notices it and stares at it a lot. Kids question it. My heart wrenches.  I continue to remind him that his birth mark makes him special and that he is beautiful. Then behind closed doors I beg of God to not let kids be to cruel to my golden boy.  He knows his name, address, ABC's upper and lower. Can count to beyond 20.  Knows more in that gorgeous head of his than I can wrap my brain around. Just as I have been told all these years... In the blink of an eye... And in the blink of an eye I have a nearly 6 year old about to go to Kindergarten. When did this happen... I still don't feel old enough to have a 6 year old, but then I look at the gray hair coming in under the colored hair and I remember that I am old.  Hair as dark as mine and gray do not mesh well. 



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Then there's my "Masey". My still chubby cheeked mayor of the family. I swear the kid is gonna run this town one day. He is soo charismatic and outgoing.  He has become quite clingy to "mama" lately and I am totally down with that.  He will be in VPK in the fall and just behind his brother we will have another Kindergartner.  Wahhhh!!!! He tells me he has "100 girlfriends" and a part of me sort of believes him. As we walked into school the other day I hear "masonnn!" in the most precious little voices, we look back and identical twin girls are making their  giggly way to my boy. His feathers fluff and all I can think of is how proud Daddy would be right now.  He owns it peeps. Owns it. Those of you who know him, know I am not kidding.  



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Mothers Day was lovely. I celebrated the Friday before at the boys school. Muffins for Mom ; ) 




On Sunday we went to Church. The same church that rallied around our family while Pax was in the hospital.  They introduced Pax to the church and talked about being a Mommy to a special needs baby.  It was a perfect day to be introduced and I was proud as ever as we stood up, showing off our boy, this side of the struggle.  He was even brave enough to walk up on stage when all of the other kids did.  I think it's good to allow those who show love and kindness for a family they don't even know to put a face with the name. To put glory to the struggle.  I fought back tears as per usual.

After church we totally last minute decided on a boat day.  HEAVENNNNN! 
It's where our family of five is the happiest. Out on the water. Cares behind us. 


hang ten dudeee


so weekend at bernies...



Mommy of 3. So, so incredibly blessed.  Sleep deprived and all.  Beyond measure.





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Alas...life is good in spite of the lack thereof... And while this Friday, my night consists of laying in bed blogging and then tucking in early instead of rocking out to Lady A like we did last, I realize sometimes staying home is just what the body ordered.




We have a big couple of weeks coming up.  Daddy Dave took a little drive this past week...




Yep...that's him in there. He has an umbilical hernia that is now incarcerated and will require surgery this coming Tuesday.  Never a dull day here in the West house...ohnosiree!


So while I hope it won't take 3 weeks for me to return, I won't make promises I can't keep because at this rate anything can happen over here. 


 It's ok though because in the words of Bon Jovi ...."we've got each other and that's a lot..."


click here to see the rest of our family photo shoot




Love and hugs
~j

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