bake sale and dripping eyes

so tonight I'm sitting here with drippy eyes...my friends are hosting a bake sale for Zeke. its really overwhelming. i don't know how I'm gonna get through it. i never thought i would be in this place. i never thought i would not be able to do everything my child needs..it breaks my heart. i guess in ways i need to be realistic..this is not a normal situation..not just needing new shoes.. its pretty much gonna be a 2 million $ smile!!! yup, that's what we are told!!!! i need some prayers to get through tomorrow if you will..my strength is low today. I'm kinda tender when it comes to my babies. Zeke is doing great. We leave tuesday for Chi town again...man that went fast. its post op check up time. and they should give us his next  team meeting date. followed by surgery date. sorry for not posting much tis week..I'm kinda whooped this week.. night friends..i will post pics and stories tomorrow...love.

foundation HELP!!!

ok friends...i have some seriously educated contacts. i know all your life you have been waiting to use that well paid for brain to do something GRAND!!!!!!! I WANT TO START A FOUNDATION/CHARITY  to help families with babies like ours. i have made a few contacts and have some help in doing this...please help me. i have never done anything like this. lets do this...lets help others. contact me lets get a meeting going to brainstorm. i know your busy..i really know. give me 1 hour of your time. there are many many zekes out there!!! Gods got us in this....he is leading me, leading my heart. GO TEAM!!!  missyfox125@gmail.com

4 moms in 1 week....

its easy to feel alone in all of this....its easy to think why my baby....its also easy to get mad,sad, and want to scream and be selfish and say haven't i had enough????. But, really what is enough? how can we think enough is enough.  tonight i was researching zekes stuff....it always makes me sad to see all the pics of the boys and girls that have the SAME thing as Z. so clearly by looking at the pics i should be aware that we are not alone. and also by all the friends and family that are lining up to hold us during all of this are even more proof that we are not alone. but it stills feel pretty hard doing this. it still feels overwhelming looking at travel dates and expecting new dates. i try not to get ahead of myself in all of this but sometimes i feel like the toy in the bathtub circling the drain....round and round and round.
    but, this week i had a reality check. in my 3 days of work i saw 4 mommies with profound baby issues...amazing. one mommies baby has had almost as many surgeries as i have fingers...and very soon will have more surgeries than i have fingers to count on...he eats by a feeding tube and his body just doesn't give him any breaks. yet, she never ever complains and ALWAYS smiles and even giggles about her boy and his spunkyness..another mommy has a beautiful little girl that just came to early...and life has just challenged them at every crossing...her baby will always need her help..yet, she is brave and searches out the Best treatments for her angel...she also never complains. my buddy who comes from way across the state just to see me has a baby just like Z....she takes pictures every moment of her sweet patient baby girl..she dresses her in all the frilly girl stuff a mom can find..and if you cross her about her baby ..watch it. seriously watch it! then there is the grandma raising not only one but two autistic grand babies...with very very very little finances...He does the best EVERY day for her grands...and wouldn't change them for a minute..she says" they are who they are..and who says that's not what normal is." and for my beautiful friend who can no longer hold her baby ...only in her dreams does she still smell her..hear her giggle..and touch her I'm sorry for being selfish in my grief for normalcy...my pain will never compare to the ache you feel every moment of the day...I'm truly sorry...

      one of the hardest parts in this has been people saying its just "cosmetic" BULL CRAP. sorry. really??? did you not go to school? did you not see how mean kids are...even if you just wore the wrong style of shoe...imagine a kid who talks a little off...who can shoot milk out there nose at the lunch table..a kid who may not have any teeth...a big scare that for some reason that just didn't heal right...or may even have to wear hearing aids because the cleft affects that. so please whatever you do don't tell me its cosmetic...oh...by the way there are cleft babies that have many genetic disorders as well...that cause a whole gamut of hardships..so please dint say cosmetic around me...
              maybe in all of this i will start the cleft pallet group that my family  needed ..one that will help families and kids like us . to give us a group of people just like us. a group that is not sponsored by a plastic surgeon...looking for a dime. maybe in all of this we will find a way to help other families.
         we have been blessed to have MANY MANY  people realise what a financial strain this is...how 2 people with no vacation or sick pay take off multiple times a year...buy, bottles that are $80.00 for only 2 bottles. these friends  are filling the gaps and carrying us..praying for us and loving Zeke and our big boys. what about the other families that are out there doing this alone.. it breaks my heart.
         i don't have a neat and tidy way to end this post...most days i know we will be ok. most days I'm very strong. and for the most part we are resilient. and keep on swimming just like DORY...but just for tonight I'm sad.mad and a little overwhelmed.but, greatful to have my perfectly imperfect little boy..

the devils playground

so we all are given tests and trials. everyday we face something. whether it be passing a test at school, driving without cussing, or just working on being a better spouse or mom. a sermon that Pastor Toby gave awhile back made me think. he spoke about how the DEVIL is ever present in our lives. his sermon has been about the good life..we all are on the lookout for it..we all want it. do we realize that the devil comes with that?  the closer we are in spirit with God the more the devil pulls on our hearts. and man is he sneaky!!!!! as with any relationship when there is good there is bad.                                     
    recently T and i have been pushed and pulled..stretched beyond what we can take. by ourselves. first there were no funds for our travels..my heart doubted...then there was no place for us to stay..again i doubted...then a huge bill came in..we paid it..then another we paid it...then a last one. I OPTED TO WAIT UNTIL WE GOT HOME. we got home from chi town only to be back in the hospital. i still waited. holding on to our money so that i felt SAFE.i didn't  TRUST.. they shut our gas off. reality.hit straight in the face. well, maybe it was the cold shower. man is that humbling. we paid it. then the man came to turn it back on. it was a man I STRONGLY DISLIKE.( in the past he had said very ugly and hurtful things to me) a friend of the X. craptastic. and embarrassing.so now we have the gas back on yay..then while we were in chi town my x sends a letter via attorney about custody issues..more...chris begins having car issues..then i find out my health insurance is cancelled.. the hardest is T and I have a disagreement...we never fight...we just don't..and then we did...then while at WORK HE LOSES HIS WEDDING RING...my heart is broke. it was a complete and total accident.his heart was broke...with all that's going on that was my wake up. THE DEVIL IS HAVING A HAY DAY WITH US!!!
        so we talked about this playground we have given satan to play in...and last night we locked him out...he is no longer allowed in our good life.. yes we know he will keep stopping by. it just wont take us so long next time to realise whats going on...is the devil working on you? causing chaos at home, work, church, in your relationship with GOD. cast him out shut his scheming ways out.YOU HOLD THAT POWER.. set your Armour out the night before. suit up. i guarantee you that he is peering into your life and trying to fit into the gaps...fill those gaps with the glue of the spirit..be strong..be brave and above all dont forget to trust and never doubt the power of our lord.



v:12-13
" For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this worlds, against spiritual wickedness in high places. wherefore take unto you the whole armour of God, that ye may be able to withstand in the evil day. "
           

Faith, Insecurities and unfortunatly perfection.

life has an uncanny way of throwing curve balls at you..it can rock you to the core at times. unfortunately for me and those around me I'm a perfectionist. this means i expect it of me and those i let be around me. i can be incredibly hard on myself for mistakes and when i put my trust in you...it hurts so much when your humanness lets me down. i think in many ways its my insecurities in myself that makes me this way. i got myself into a few bad relationships and allowed them to hurt me and my brain. i listened to them and got to where i believed that i was nothing..nothing more than just some girl that was LUCKY to HAVE THEM..IN THAT WAS BORN MY SELF DISLIKE AND DOUBT IN MYSELF. i have spent many years repairing and rebuilding me. i have to. i have three boys that need to be man of God..good men kind men..loving man...and have the ability to love kindly unselfishly and know how to clean a kitchen and wash there own clothes its funny though how insecurities still flow like a river at times.you work so hard to keep going and like a tide they roll in and roll in again..                                                                                                                                                                  
    this is where my FAITH comes in.i had gone through a horrible day and was lost in that days events. i had been so busy taking care of trying to make things ok that i FORGOT to pray!!! and at the end of the crazy horrible day i apologized to GOD ..I SHOULD HAVE GONE TO HIM INSTEAD OF LEANING OF MYSELF AND TRyING TO fix things..i should have given it all to him. something cool that i have learned is all to often we place our FAITH in humans. man that's a big flipping mistake. they will somehow some human way let you down. whether it be your boss, mom, dad, sister spouse, and yes even your pastor. they are all wearing the skin of man. its a scaly, rough and at times to thin or to tough...so my point is this. forget perfection forget  the insecurities that you have..ya right. but at least try.I'm going to put my faith back in its place. the humans around me back into their spot and PRAY A LITTLE MORE.


1 John 4:18
There is no fear in love, but perfect love casts out fear. For fear has to do with punishment, and whoever fears has not been perfected in love.

comment and questions!

i believe i have fixed the problem..lemme know!

RANDOM RAMBLINGS

so lately i have been asked why blog? well...hmm i dunno. i have these random thoughts that wonder around my soupy brain and i need to vent. so you guys get to hear my random ramblings...and laugh at my inability to spell or punctuate. and the best part. i don't care... well< i do care..but, not enough to worry about my HORRIBLE writing skills. i only use capitalization on things that as i type they pop out in my head. and i often tell my stories in circles...sorry have fun chasing my words. lol!
        so today's challenge was simply...not crying. i know re darn diculous! my emotions are not in control at all. i have so much that I'm thinking about with Zeke, upcoming court crap, and how to be a mom,wife, daughter,hairdresser, food cooker,butt wiper,booger picker,laundry doer and me. as a mom we often get lost in all of the titles we hold. there are many hats worn by this chic. good thing i like hats!! chris is in school,army and works a full time job. so our time together is little..and usually involves moving babies from here to there. so finding the time to blog is a luxury and something i enjoy..something that helps me to remember me..a me
moment.
  HANG ON...HERE IS ONE OF THOSE CHANGE UPS...    i have learned alot in the past few years. things rarely stay the same. so if your in a big steamy pile o poo..wait it out. its going to change. really it will. sometimes it changes for the golden pile of poo and sometimes it changes into what you needed it to be. put on your gas mask wade through it and go on. simple to say i know. but, trust me i really know. it will improve. and if it doesn't improve reevaluate your positon and MOVE THE HECK OUT OF THE Area. there is nothing that says you have to live like that. wow that's the randomness i was talking about..i think sometimes we think in STATUS thoughts lol!                                                                     
   what are you wading in? are you ok?? so you want more than just a few stolen mommy moments?so i have a friend who blogs and people ask her questions....got any for me? my email is missyfox125@gmail.com now if your rude and horrible I WILL BLOCK YOU AND LOCK THIS PUPPY UP. i have no time for drama. so lets play! ask away!!or even leave it in the comment section...

3BIG WORDS.

we are home. three very simple words. much like I LOVE YOU.  its been a good week. a hard week. a hungry thirsty i rode the L and survived taxi drivers week. chicago is an amazing place. full of tall buildings navy piers and clowns. really... clowns. they all live at the Shriners hospital though... and they completly freak zeke out.                                                                                                           Zeke began running a fever saturday. it could have been earlier but we had him on tylenol and motrin all the time. so we didn't know. we needed a temp reader ...and the mcdonald house didn't have any. so we took a taxi for $ 8.50 and bought a $4.00 thermometer. and yes he was cooking.. 101.5. yuck. i wanted to cuss.alot. fever a few days after surgery is not my favorite thing! he wouldn't drink or eat. well sorta. he did have ice cream for diner!!! and i even gave him chocolate ensure ..just to feed him. we wanted home. we wanted our drs. we flew in as scheduled. BUT!!!!! we made sure with dr. sood that we should. no we did not put him in jeopardy.  we went to the ER and were immediately admitted. within a few hours of having an i.v. zeke was a little better 12 hrs and he was back to 50%. its amazing what pain meds and a little fluid will do for a baby!! we have learned the the zekester...unfortunately is not a lover o pain. duh.  i had asked that the dr and nurses at shriners to stay ahead of his pain.  they ask you whats one thing you worry about. mine was his pain. next time i will not ask i will demand it. respectfully.
       the big boys did great while we were gone...nawney and poppys house is like going to disney land. NOAH IS ALMOST POTTY TRAINED. he may not have any teeth left afterwards. candy has done the trick!! woot woot!! he is squeaking out the tiniest drops for a bite of candy...oh my...elijah worked fiercely on his reading skills. a scrabble game has done the trick for him go nawney!
       many lessons were leaned this week. no you cant blog when you only have one hand to type with.demand the care your child deserves. sleep when the baby sleeps. pack h2o with you, and a gun. taxi drivers and L must be taken with seriousness.  ;)   we have learned that our God rocks. our friends and family amaze us!!! they have fed us watched our kids prayed constantly and are creating a zeke fund so we dont have to panic just because we have to take care of the great zeke!!!    we are home. the chaos is grand and I LOVE MY PILLOW!!!!!! NIGHT ALL LOVE TO YOU AND THANKS FOR THE PRAYERS!!!! GOD BLESS YOU!     

Surgery

OK so Zeke is now in Surgery. They gave him goofy juice..wish he would share. We asked God to be his surgeon. ..we know he will. Jen and Liv came and stayed with us until and after they took him. He has a great fan club here. The no hunger prayers worked wonderfully! He only signed more after his goofy juice. LOL!!! We are all amazed by his courage and strength. Chris picked out his cast! One orange one black...go pokes! They will stitch his tongue outside his mouth...it helps with breathing. They say he will have swelling. Last time he looked like a moon...so we expect it. Chris is strong and said a beautiful prayer over him..I tried and sounded like Minnie mouse praying. Bleh. ..its already been such a long day. We met a girl and her mom from the Chicago area. Their daughter has spina bifida (sp ). Their testimony was amazing..they thought she would be paralyzed yet she walks...she is a swimmer! We talked of the fact that these kids that have difficulties are true warriors!we said our goodbyes. Then about 20 minutes later she found us and wanted to buy our diner!!!! We didn't let her...we ask that she donate it to the Shriners. ...we are blessed each time we are here by the people we meet. The kindness from strangers is overwhelming. I will update and post pics as I can. The song I hear now is....be still and know I'm here. I'm listening. .praying and hanging on to my God.

X

Words fail.God never does. I'm listening to DMX. Lord show me a sign. That man was a poet. No weapon formed against me shall prosper...T found this and made me listen. The devil is at our gate again. Many of you know of my former...he raises up ever so often. Lately its when I'm weak...and taking care of send..I received an email yesterday from my attorney. He is at it again. I refuse to allow him into my brain. I'm an oak..my roots run deep and strong...my bark is worn but, makes me impenetrable. My branches carry the leaves, my friends who cover me...I reach straight up to heaven and grow to his glory. So bring your storm...I have my army and armour ready. My God is BIG! My faith is steady... if God is for me nothing nothing can stand against me!

angels and airplanes

So we have arrived. I have written a thousand blogs in my head now..but lucky you this is the one you get tday. Upoun getting to the airport my nerves set in. Horribly. Then I see the smallest danger plane get to the gate. S@*#. We are sitting and waiting when in front of us sits a dapper pilot. Then I look at his cheesy grin. Its Mike Andreoli!!! One of my very very best friends....he is riding on our plane to go to Dulles to go to work....he would deny this but he was an angel yesterday. .he calmed my worried nerves...God sends us just what we need. Then our ticket man had a cleft!! He was a patient of Shriners in Galveston! We were amazed. He spoke to us about what a great life he has now...keyword now. Growing up was horrible he said children were awful. ..so I know what to start praying for now. Zeke is awake now...we are going for preop at ten. The tears are still flowing. ..I wonder who our angel will be today..Thanks for all the texts and prayers it really helps...love and miss you all. Elijah and noey, mommy loves you. Remember look at the stars..God made them just for us and he even calls them by name. Love and kisses.

a mothers prayer

while packing tonight i kept touching the boys clothes. i can tell you where we were each time they wore there outfit for the first time. I'm odd like that. i love to put my nose in their neck and smell them. you know, that sweet little boy smell. its a cross between outside air, & cupcakes mixed with a little mud. i love their little hands. when we are walking and they gently slide their hand into mine. or when they are playing and they spontaneously say MOM I LOVE YOU!! nothing gets better than that. i want to see them marry..go to college...be BAPTISED...and learn to read. i wanna be a grandma. i want to shower those babies with unconditional love. i was packing Zekes clothes. it was hard. awful and gut wrenching. I've seen a friend loose a child. i cant. i simply cant. i don't think that there would be enough air to breath..enough light to see or enough of my God to heal me. so this is my prayer. dont let this be the last time i carry him out of our home. let him grow old fall in love and have little red headed babies. please God let us bring him home. amen

3boyz and a little dedication

as parent we assume many roles... snot wiper ..lunch packer..clothes picker outer..hand holder..heart mender..guidance counselor..and word of God  filler upper!today chris and i took a big step. one of the biggest a parent can do. we promised before man and God to teach our children about God and his right hand man. my knees shook. I'm not sure if it was being on the stage or if it was the fact that this is not like promising pizza for diner. Elijah seemed to understand. he was impressed with his BIBLE and tore the wrapper off like it was a hot wheel car. the audience agreed in prayer for the boys and it made me sob.  our family surrounded us and our pastors lead a prayer that I'm still hearing in my head. its all overwhelming to sit in a church and know that we are all there for the same reason. much like going to a maroon 5 concert! i look around and see people all singing Gods praise and my heart is happy. i cant imagine what God hears on sundays.. i bet he wishes he could hear all that praise 7 days a week. this week our journey begins. we begin anew. i hope you all have a blessed week. my prayer for you is that you feel just as we did today..filled with love and filled with Gods grace. 

MATTHEW 17:20
He said to them" Because of your little faith. for truly, I say to you, if you have faith like a grain of a mustard seed, you will say to this mountain, move from here to there,' and it will move and nothing will be impossible for you."


now go move mountains. were gonna...starting with 3boyz.

waffles VS speghetti and other notions

its been a week....not a bad week just a BUSY week. I'm learning so many new things about myself , our marriage,my children and my faith. ...with moving to the new salon so many things are happening. i can see GOD in all of it . from the atmosphere to the happiness that beams through the people. i was working on a client,  this is the 2nd time that i have done her hair. we were talking marriage {she is getting married next week} and kids. we exchanged backgrounds hers was short...mine well, not so much. i explained E's special needs and we talked about wild man noah and then about zeke. she said i was sooo strong. i get that alot. I'm not.not at all. at all. we are given things in life, in those things we can decide to waller in the pain , or rise.i choose to  rise to the opportunity to make a wonderful life for some wonderful boys. its really not strength. its just being a mom.  so new girl  :) thank you for your kindness..it helps but, i still cry, occasionally get really mad  at God {yes,you can do that}and can be a grumpalotopuss.
marriage, we are doing a study group at church its about how mens brains are like waffles and women's a bowl of spaghetti. MAN IS IT SO STINKING TRUE! man have these little pockets in there brain for each thing and part of their life. EVEN A REST POCKET. NO FAIR! our poor brains are jumbly pile o noodles..and i agree. all of our life is one big pot of do all, be all ,mess. no wonder we all need medications  ;)   it really explains alot! we multi task men do not..and yes when they are gazing at the tube ..there is really not a thing roaming in their head. and no they are not mad.
FAITH: I'm not a New believer.. just a better one. i have always believed and always loved God. i just ignored him. it at the time was my selfishness and a way i thought i could survive. i prayed..alot..but, it was a selfish prayer ...me me me.  i i i i. now don't get me wrong  I COVER MY FAMILY IN PRAYER EVERYDAY ALL DAY.  but, i now pray for others , our leaders, doctors and teachers. i pray every year that the boys have spirit filled God fearing teachers. so far so good.   have you ever been lead to pray for and with someone you barely know? i never had until the other day. we had a sales rep at the shop she was in my room and got a call that her son had collapsed and was on his way to st. johns. she was shook. i grabbed her hand and prayed hard. i was in shock. i wasn't wordless and had Gods words flowing through me. it was AWESOME!!!! i suggest you try it..
also this was brought up at our couples class. WHEN ITS THE VERY HARDEST TO LOVE YOUR SPOUSE. LOOK AT THEM AS THOUGH YOU ARE LOOKING AT THEM WITH GODS EYES.. GONNA GIVE THIS A TRY. and no I'm pretty sure its not as chris would say a mean mugging face...

waffles are not just for breakfast and speghetti is not always best at Zios
MEN ARE LIKE WAFFLES WOMEN AR LIKE SPAGHETTI BY: BILL AND PAM FARREL