It's late, it usually is when my mind starts racing.

You're fast asleep, well I hope so. I know sometimes long after I put you to bed you stay up thinking just like me. I wish I could help your little mind rest, but I understand your life can be worrisome for you at times. Like tonight, if you're worried about anything it's the fact that tomorrow you start your first ever "Physical Therapy Intensive" program.

You're therapist feel you are the perfect candidate. Lindsey I believe was the first to bring it up, or maybe it was Cheryl. Either way, they feel it's time to try something new to help you.

You've come a long way, so many people can't even see just how long it's been. But you & Papa Dios know and that's what counts. You more than anyone my sweet girl know how much you've had to climb to get to the peak you are at today. But there are many more mountains to conquer and so here we are the eve before a grueling three weeks to come.

I've downplayed the intensity of this because well you're 7 & I can't scare you right? But of course you all on your own feel it. Today you told me you don't know if you can do it and I told you the truth, this I did not downplay because I know you are a warrior! You CAN DO THIS! You WILL DO THIS! And I will be cheering you on every step of the way. I know it won't be easy baby, but nothing you have had to conquer has been and yet look at you still a shining bright star! You smile so much it's inspiring, really inspiring.

I hope you don't cry, they say a lot of kids cry & give up by the second week. It's not easy 2 straight hours of intense physical therapy everyday of the week M-Th for three weeks straight. Going from 1 hour twice a week to this will definitely be quite the change, that's why I chose to wait until summer so you wouldn't have to do this after school since you are usually already exhausted by that time. I also chose to do it at the beginning of the summer, so hopefully we can relax the rest of the summer like every typical child gets to. You deserve that, I want that for you! I know you tell me quite often you just want to not have anymore therapies, I'm trying baby to get you to that point. You started at 7 months old & here you are 7 years old. I'm not going to downplay the fact my heart is extra heavy for you tonight, so heavy, I wish I could trade places with you! I'm so sorry that I can't. I know you though, you won't give up & you probably won't even cry because you don't like to let others see you weak or sad. But can I tell you something gordi, please don't go through life hiding these normal feelings. It gets heavy, take it from mommy. Please let others see your pain, your tears, your fears, all those are feelings that are also healthy. Validate them, I will be there these next three weeks (well for the rest of your life really) but especially these next weeks to validate them when they do come.

The beautiful thing about life is that you can feel all these feelings and still find peaceful & joyful moments to carry you through. You are my peace & joy that carries me through many things you don't even realize just how many. Thank you for that.

My prayer for you today is that you wake up tomorrow ready to move mountains. That you know that God is with you every step of the way, I can see him now just standing right beside you giving you wind beneath your wings. He always has, I know it's him that has helped you all along. You know that song that we listen to a lot since the Hillsong concert we went to for Mother's Day weekend, "Another in the Fire" well I know that Jesus is with you in your fire standing next to you just like the song says. Another in the waters holding back the seas, it's him in spirit. And essentially I am here for you baby.....in the fires & in the waters I will hold back all the seas for as long as I have air in my lungs & a heartbeat. I will never stop being your life partner, I'm your mommy today, tomorrow, & forever. I will never let a fire burn you or a water drown you. You my darling will never feel alone as long as I have life on this earth! Even when I go home to our Heavenly Father, I will be with you to ensure you never feel alone. I love you, I'm with you, & we got this!

I can see the light in the darkness! I'm going to pray so fervently that at the end of this program you will be stronger, you will walk longer, we will say goodbye to that wheelchair, I will not have to shop for an electric wheelchair, you will climb stairs without holding onto anything, you will get on/off a toilet without holding on, you will stand up without hands on the ground, you will jump, you will run, you will ride a bike, you will swim, you will feel less pain, you will you will you will YOU WILL!

REMEMBER YOU ARE PERFECT JUST THE WAY YOU ARE, NEVER EVER FORGET THAT!

Today in church you told me you were so proud to be my daughter, no baby you have it all wrong. I'm the proud & lucky one! Well I guess you're right we are both lucky to have found each other because our love & compassion for each other goes beyond the highest peak of mountains on this earth. YOU'VE BEYOND MADE ME PROUD TO BE YOUR MOMMY! And I will NEVER you hear me EVER stop making you proud to be my daughter!

Tomorrow's another new day for God to reveal his glory here on earth, you will continue to be his testament (I just got confirmation goosebumps & tears) with God on your side baby you will need nothing else, you are his child. Keep loving him & trusting him. We love you eternally.

All your angels Grammy, Abue, Capu, Abuelita Chicquita, Mama Negrita, Bella, SuperJuls, & all those who have watched over you that we may not even know....have come to you united tonight. They will be flying over you together for this program. They got you too! You see how loved you are my baby? You really are! 

Goodnight, sweet dreams only, God Bless you! See you in the morning Warrior!

PS. Wait until you see the shirts Tia Jessica made for us they say "Mighty Warrior Judges 6:12"
So you know that scripture reads as follows: “The Lord is with you, mighty warrior.”
Tia also made you a special cup which we will take for water breaks & it reads as follows:
"She believed she could, so she did" (Front) & "Brave, CP Warrior, Sophia" (Back)
Mommy got you the Batman bandana you wanted. So you got your warrior gear ready for Day 1. Can't wait to see you dressed & ready to go move mountains!

Our song "Another in the Fire"=Hillsong United
https://www.youtube.com/watch?v=zmNc0L7Ac5c

Sophia,

I know this life you've been given isn't easy for you baby! I'm so sorry for that, I wish I had the power to change this for you. I really do, you have no idea just how much I'd give to trade places with you. Today we spent the day getting your school supplies, as mommy doesn't like to wait until the last minute. It was a long & tiring day as all school shopping days are. A couple of days ago we did some clothes shopping for you, got those Disney "Cars" shoes you really wanted for school. You're growing so fast, it seems lately I have to get you clothes a lot more often! My tall, strong, kind, beautiful girl. Today I'm sad pondering what you said to me this evening. We were talking about school & you asked me why you can't "climb" up to the top of the playground in school. You mentioned how you don't want to stay at the bottom "alone". How the big kids all go to the top & "no one" wants to play with you at the bottom. Ay gorda, I wish baby that you could climb safely alone right now without losing your balance. I do wish you didn't have this condition that set limitations that set you so apart from your friends. I couldn't say nothing more to you in that moment but that I'm sorry you feel that way and remind you how Raquel at Bowman did play with you at the bottom. I pray you'll always have a "Raquel" kind of friend who won't leave you to feel so alone at school, so different, so incapable as you seem to feel at times. Just know my sweet girl that you're never "alone" so long as mommy is alive. I will never leave you at the bottom, we'll always be climbing to the top of this mountain set before you, TOGETHER! It might take us a little longer to get there, but we'll smile along the way & praise God that we have each other! You'll remind me with those sweet hugs & caresses of yours what truly matters in this life is not how hard the fight is, but the heart in the fighter! You my girl, well you have a heart of a Lion! I'm so proud of you, keep smiling baby girl! Te adoro!! I know baby one day I won't have to tell the teachers to sit you down for half of your recess, but right now baby that's where we stand today. I know one day you will be able to climb up trees, playgrounds, all of it alone, we'll keep praying & working hard in therapy for this all to come to fruit for you! BUT my girl please please never forget that if this day never comes, you still are one very very special girl! You still matter! You still are my AMAZING little butterfly! And you have climbed many mountains thus far, maybe not literally but you have, always be proud of how far you've come! Te amo con todo mi alma!!!

PS Remember "Progress, not perfection" (Although I must say you are quite perfect to me!)

Since you're so in love with Moana these days, so you never forget, I leave you here her reminder...."Come what may, I know the way!"..

And do you not look so adorable at 5 & 1/2 years old in this new orange (of course it's your favorite color) jump suit. Just how you love your clothes these days lol pants only & pockets pockets pockets. And walking out with your shoes, such a big girl! I love these pictures, I hope you'll enjoy looking back at this memory someday!

A long way traveled

I sit here today looking back at old pictures & it hits me just how long it's been since we started this journey together. Well some may think 4 & 1/2 years is not very long, but I think the harder the journey the longer it feels. Or more so the more you can appreciate each minute of it. This "journey" I speak of, I know it's quite cliche to call...LIFE....a "journey"....right? Most of us refer to "life" as a journey. Yet isn't a "journey" supposed to be fun all the time, be a "voyage" that is full of grand moments. I guess growing up my imagination ran wild & believed so. Think for a moment though if a "journey" is the "act of traveling from one place to the other" than my dear LIFE is in fact a journey. It's made up of moments in time each one leading to the next "place" you will find yourself. I can't help but to look at our life together, us two, mommy & daughter as one long journey thus far. We have traveled many miles together both figuratively (as in pics) & metaphorically speaking. Sophia has had much to endure in this short time of her life & well as her protector I have endured it with her. For those that don't know the history you can read back to the beginning & only catch a small glimpse (hopefully one day I'll go back & post some stuff of the journey so far or I'll just post when my heart says to, like it did tonight). If this is a blog for myself & Sophia than here it goes.

Sophia my most precious treasure I could ever find, I love you endlessly! I want nothing but abundant Grace to be bestowed upon you, as you have bestowed upon me my sweet girl. (I should have made your middle name Grace....Sophia Grace!! You have been my travel buddy unconditionally & what a loving one you are. Heaven sent without a doubt. Our journey has made us better people, more so you have made me a better person. You have taught me that even though we travel from place to place with heavy loads on our back, we should always smile as we attempt to stand tall. You have taught me that perfection does exist, you are perfect! Never let anyone make you feel different. I fight so hard to make you "perfect", give you a "better" quality of life but you truly are already amazingly perfect! I pray Papa Dios guards your heart always, because with a strong heart everything is bearable. I promise to do my best to always keep that smile on your face. To travel this long road with Grace & for those moments I don't please forgive me my sunshine. Sometimes mama's back does get tired of carrying heavy loads from "place to place", but your the reason why I'll always get back up even when I'm weary! Thank you for being my inspiration, the reason I keep going. I hope I have been the reason you stayed & have kept going so strong! Your a fighter, a strong willed little girl, so caring & kind to all you meet! Never let the journey change your spirit & if you feel it changing go back & remember where we started!

Te adoro
Your lifelong travel companion

-6.7.13, 1 Yr. & 7 Mths. Young

-4.15.16, 4 Yrs. & 6 Mths. Young

Superwoman doesn't feel so super!!

Today like most days has been tiring, we (Sophia & I) are 3 years into this journey & it feels like 30. I've come to terms with the fact that in reality no one truly knows what it's like to be us. No one knows what it's like to be a single mother with the heart that I have wanting so many things for my little girl, all of which most days seem to be out of reach.  Everyday I stay as positive as I can, it seems almost as if the world doesn't allow you to have a weak or bad day for it then means your "negative". Well I beg to differ, I think only the strong show that they can't handle their journey alone nor with strength every single day of the year. Considering our life, I think I'm doing pretty well at staying "strong", but I wanted to note this day. I feel weak (due to my own health issues), exhausted, uninspired, like there isn't a light at the end of this tunnel. See today Sophia's new Physical therapist Lynn & I met. Sophia just started at B&V Therapro last Wednesday after 2 months of not being able to find her a place, since the last company that serviced her no longer could since our recent move to an area they don't work. I must say that was nice to have a company that came to our home & provided all her therapies. Anyhow so now we are at a facility, very nice one I must say. So we've been meeting her new therapist little by little. Lynn will be one of her PTs & she happens to have a son with Cerebral Palsy he's already an adult. Well she "shed some light" on the matter & let's just say it's not the kind of light that helps you as much as they do mean well & think they are helping you by giving you more reality checks. Those moments which there have been several that they tell you things like "she will always need therapy" or "her neurological matter will never change, the damage is done".....these things don't exactly give you the brightest picture of the "future".  All you imagine then is will my poor little girls body always be this solid rock needing this stretch there & this exercise there mind you an agonizing process for her & for I to witness!!! Will her foot never go down, & will it be as this therapist is telling me after "several surgeries". I mean will we ever have a life without appointment after appointment. You mean she has to see a neuro & ortho FOREVER!! (INSERT HUGE SIGH) WHY ME IS ALL I CAN SAY RIGHT NOW, WHY HER!!! DON'T get me wrong I've accepted that this is a lifetime matter, but I guess a huge part of my soul keeps distracted in the "Faith" sector of my life. Like God will heal my little girl & there is a light & a life free of all THIS!!!! Maybe it wouldn't be so hard if I had more support, like a group I knew when I'm at my wits end, I could recharge. Maybe of just 1 of 6 now but use to be 9 hours of therapy a week someone else could sit there & have to be the one to witness her pain. There's only so many hours in a lifetime you can watch your Sunshine not shine so brightly. I feel like I've been watching her suffer more than not since her birth. I feel so so so angry at this reality & yes before I'm written off as a negative one again I am positive, I am aware of my huge miracle & blessing!!! BUT That DOESN'T make this any easier most days. See everybody just sees this little girl smiling & 'HAPPY" but they don't know how much energy it takes to enlighten her life so when she is in those dark moments they aren't half as bad for her (but they still are for me). I don't know what else to say but that if God could just give me one wish, I do, I do wish for my little girl to be FREE of Cerebral Palsy!!!!

TODAY SHE FLIES

GOD IS A GOD OF MIRACLES!!!!

I know it's been a long time, but I can explain (another nite lol). Tonight I wanted to mark in history for my miracles' blog, the second grandest day (First was 10.13.11) of my life...
June 10, 2014 @ 5.13p.m. she took her FIRST steps alone.  There is so much to catch up on since my last post in 2012, but for those that know what this journey has been for us, well you know just how glorious today is.  It's just the beginning of something so beautiful.  In short a couple of months ago, I had to hear a neurologist say, "It will be difficult that she walk before the age of 5 & even then she may never be a smooth walker!"..........Well she hasn't even turned 3 (Just 2Yrs & 3days short of 8mths. old) & to me she has walked!! God has always been with Sophia & now more than ever I believe that!!! (This picture always reminds me of them & of course they are holding a butterfly)

My Butterfly,
You make me smile from the inside out everyday! You are my Sunshine that shines brighter with each passing moment! Today I shed tears of happiness, joy, & blessings! When you fell into my arms after those first 4 steps it was as if we had just walked in heaven.  The sound of your laugh full of joy towards your own accomplishment was so enlightening, I could feel just how proud of yourself you were!! I know baby, I know you've worked so hard for this moment!! I'm so very proud of you, no words can describe just how proud of you I am.  You are my hero, I admire your will, your strength, your endurance to fight, but above all your faith.  Now I  know I didn't get the actual first steps on video but that moment will forever be engraved in our souls!!! I looked at the time & ran to get the camera to share with the world & most of all for YOU!! I pray you always look back at this moment & see all that God & I see in you, our brave warrior!!! There is nothing in life you can't overcome!! Remember what mama tells you every night at bedtime, "Papa Dios Siempre esta contigo!" The feeling of immense fulfillment & happiness got more intense with each practice step. I think it's pretty clear in the video I finally got of  you on try #3.  I'm so indescribably blessed to be your mother, thank you from the bottom of my soul for choosing me!! You've come so far my angel!!! I love you baby, I love you so much!!! Keep soaring high my Butterfly!!!

P.S.Today one of mama's sister's from Emmaus, actually sent out a prayer request & it included this surprise.  I read it around your nap time & by evening the Glory of God & his Grace was already being revealed!!! Amen to your First 4 Steps!!! Te Adoro! May God continue to bless your journey!!


Many of you know that my husband, daughter, sister, brother-in-law and I will be walking the last segment of the "Camino de Santiago".  It is an 80 mile journey and we're leaving today for Spain.  Since we're older, have many health issues, and not in the best of physical condition (except for my daughter, who's 17 and is very athletic), I ask the Lord for strength and endurance to persevere in His holy name.  For we are doing this walk as a real pilgrimage.  A walk, like the walk to Emmaus.  I dedicate this walk to my friend.  I pray that the Apostle James will hear our prayers as we journey along the "Camino.  I also dedicate this walk to little Sophia, who is an angel of the Lord on earth.  May she never feel overburdened by the cross she has to bear.  For she is cared for by another hero of mine.  Her Mother is a very brave person who has to watch her little girl go through so much.  May God give her the strength to persevere.
Dedication From My Dear Dear Sister Maria Nunez, Emmaus Sister

Last Happy Birthday in the NICU!! 1.13.12

By now everyone kind of knows that every month my Gorda deserves a celebration!! So every 13th when she adds another month of precious life to our little world, we sing her Happy Birthday! January was a special month, it was the last bday in the hospital on 1.13.12!!!Whoo HOO Finally, her first bday in the new year & actually would've been the month she was supposed to be born. Sophia was due 1.9.12!! It was the first time they attempted to try to remove the Nasal Cannula (O2), & first time feeding & sucking paci w/out it....Oh & The first time Sophia was free of everything so she could walk around, & of course her lovely primary nurse Michelle took her for a walk & showed her off!! This day my daughter looked so much more precious to me than ever before, because she finally didn't have ANYTHING attached to her even if it was for a short while!! Thank you Michelle for this moment you allowed after 3mths it felt good to be able to walk around & show off my pride & joy!! Even walking around the NICU was a joy, of course I can't wait to walk around in the outside world, but for now this moment was great!! Enjoy the pics!!

 

 Celebrating 3 Months Old 



First time wearing a skirt!!! Naturally beautiful!! I couldn't stop staring at her w/nothing on her face it was a magical moment for me to see my baby this way!! 

 

Primary Nurse Michelle, helping Sophia escape the NICU!! : )

& FINALLY the Cannula is OFF, now Mami has to keep a close eye on the monitors & clock according to instructions...of course you can see the nurses stay real close because anything can happen! This happened during the day before daddy arrived from work for the bday cake!

 Anything can happen, my Princess looks at me & says oh mama I'm done w/this cannula don't worry I'm not having an episode I'm just going to enjoy this moment & smile!!

Ahhhh I like this I can get used to it!! (Sophia's words)

 

 She's been a fighter since day one, a successful feed w/out O2!! So proud of you baby, you turned a little white a couple times but you still did it mi vida!!

Daddy was texting from work & proud of you too!! Good job champ!!

Mommy & Daughter just cherishing this freedom!!!

The time went real slow when we were monitoring how long she'd last when she was off the O2, after the first hour it finally went by faster!

& the famous monitors to watch, her SATs were good

(That's the blue, you want that number to be in the 90s)

First Visit to Pediatrician & First bath at Home...1.20.12

Two days after arriving at home was Gorda's first pediatrician appointment....she did okay wasn't too happy getting weighed as you can see but she's so tiny & cute....at her first appt. out of hospital she weighed 5pds 11oz. & was 17 3/4 inches long. She came home drinking just 45ml's seems so little but it's a lot for the princess who was drinking drops when she was born.  Later on at night mommy & daddy bathed Sophia for the first time at home what a huge difference from bathing her in the hospital in her little isolette & hospital crib.  It was such a great joy to finally bath her in the comfort of home....I was a little worried the sound of the water would frighten her a bit or the change in environment for bathtime.  I was right she was a bit scared at first she didn't like at all being laid down on the bather so we opted for the hospital bins where she felt more at "home".  Enjoy the pics.

 A BIG LOAD TO CARRY WHEN GOING OUT....

 THE CALM BEEFORE THE STORM : )

 THE STORM : ( POBRESITA & HER UMBILICAL HERNIA BURST OUT WHEN SHE CRIES) 

 FIRST COUPLE SECONDS IN HER BATHER

  HER PREFERRED PLACE TO BATH NOT TO MENTION LOVES EATING MOMMY

 HER FIRST TIME WRAPPED IN A TOWEL......AHH SO CUTE!!!!!!!

THE NIGHTLY ROUTINE HER NEBULIZER TREATMENT ALSO DONE MORNINGS