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today i had the privilege of feeding green beans to my precious daughter.

i fed my daughter green beans. my sweet daughter who is fed completely by a tube, i fed her.

granted, it was tiny amounts on the tip of a spoon, but if you know our story – you know that this is nothing short of amazing. she leaned in, opened her mouth and accepted the tiny amount of baby food each time. the amazingness didn’t stop there – she actually swallowed the green beans and did not spit any of them out.

today was the very first time that i was able to walk back with her to the therapy room and actually feed her myself. i was completely blown away. i had to play it cool, though, because i didn’t want to scare the therpist by crying, kneeling and praising God right then and there. though that is exactly what i wanted to do. on our walk back to the car, i texted adam about it and the only way i could describe it was to say that it felt like i was jumping into the middle of a miracle. how is that even possible? miracles aren’t “things” you jump into. are they? miracles are so abstract, intangible, sometimes they seem distant – like stories or legends you listen to with half awe and half doubt. that’s what miracles have always been like for me until i had lucia. lucia has helped me to see God in a completely different way. the nature of her disease has caused me to consider most things she does miracles – when she smiles, when she takes a step, when she hugs me, when she understands what i say…even when she poops. can you imagine someone cheering for you every time you poop? lucia has her own cheering section by her changing table.

what i have learned is that none of these things are a guaranatee – they are a privilege.

sure, you can say that lucia ate because she has been in feeding therapy for a few months, but therapy is our hail mary for lucia. it has never been a guaranteed thing. the therapists themselves don’t know if each child they serve will be able to one day eat. we adore her therapists (and doctors) and believe that they are an integral part in God delivering His miracles to children with medical issues. but we cannot put all of our trust in what man can do for lucia. believe me, when it comes to the life of your child – you run desperately to THE only one who can actually heal her.

i drove home from therapy today and the song “oceans” by hillsong came on the radio. (i am posting it below and i highly encourage you to listen to it) as i listened to it, i felt this strong urge to encourage you. you – whoever you are – whatever it is that you are going through. whatever is driving deep pain into your heart. i want to tell you that you only have two choices here:

Plan A: you can flail your arms and feel the torture of yourself drowning in this ocean of suffering. (i have been there many, many days)


PLAN B: you can dive in. dive deep and swim deeper and deeper into it. swim with determination to see what is there – in the dark and in the deep and in the unknown. find out why you are hurting the way you are hurting. what does God, who knit you together with His hands, what does He have for you there? what does He want to whisper into the darkest corners of your soul? what does He want to do with you, through you and for you? embrace you? hold your face so that you can look directly into His eyes? will He even be there? it is worth finding out. Plan A is always there for you if Plan B doesn’t work out. basically, what i’m saying is go all in. the suffering and the fear – they are fierce and will only hurt you more the more you try to escape them. dive into this ocean God has laid out before you and desperately seek Him in it.

i feel like looking you in the eye – whoever i am writing this for – and telling you to –
GO! NOW! dive and swim and seek what is there for you!

i’m going to sound like a broken record here, but this is all i know (this has been my teacher for the past three years)…


this is as scary as anything hell could ever offer as far as fear and anguish goes.



i have NEVER experienced anything more beautiful than this. to be in the middle of this. to be surrounded daily by things that i cannot explain. to be in total and complete lack of control. a total surrender to the magnitude and power of God. and to find that God is there in the middle of my pain. through this suffering, He has healed my heart of wounds that have been there far too long. He causes me to go within myself into places i’ve long ignored. He’s gutting me of the things that don’t belong in my heart. and He is showing me beauty i have never before seen.

i used to resent God for using my daughter to draw me closer to Him. but, if you have ever met my daughter and have seen the constant look of joy on her face – there is no doubt in my mind that she is daily experiencing God’s presence and is not afraid nor resentful of what is going on in her body. Her joy shows me that she trusts Him and, therefore, I must do so as well. He is taking care of her while He is changing me.

last thing, as you dive and swim deeper, don’t forget to open your eyes. God’s hand is at work each and every step of the way and you won’t want to miss a thing.

Jeremaiah 29:12-14 – Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord, “and will bring you back from captivity.[b] I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.”

God will restore you. He loves restoration. The Bible is one huge story of resoration filled with hundreds of stories of individual restorations.

Though right now you may be broken, God will piece you back together into a more beautiful creation than you have ever imagined. dang, you and me are going to be so beautiful when all is said and done!

Here’s the song: (my favorite lyrics – “take me deeper than my feet could ever wander and my faith will be made stronger in the presence of my Savior”)




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my isabella,

there are so many things i’ve wanted to say to you. from the moment your shock of straight, black hair entered this world – the moment my sight first covered you. your thumbs stuck tightly between your index and middle fingers as your red-faced screaming declared your certain arrival. the sight of you elicited spontaneous laughter from the depths of me. the kind of joy you brought with you was unprecedented in my life. i wanted to say that were so beautiful – so beautiful – it frightened me. such a miraculous being entrusted to me. me – who was i to be given such a gift? this living beauty placed in my arms. i was terrified. i suddenly felt young, immature, unqualified for such a journey. me -still in essence a girl, still fumbling through life, and now here you were – looking to me to grow you, shield you, guide you. the fear of failure reintroduced itself to me in a gripping and demanding way. i wanted to say that i couldn’t do it. i wanted to warn you that the mother you were perhaps expecting was not me. i wanted to say isabella, i want to be the best for you and yet i don’t even know where to start.

but. you left me speechless.

your entrance into my life soon turned into minutes, into hours, into days of weathering your desperate cries, satiating your hunger, rocking your tiny body in my weakened arms. i felt listless and weary wondering when easier times would come. perhaps never, i thought. perhaps this was life from now until forever. i wanted to say that i was getting impatient for you to change, for you to grow out of this – whatever this phase of endless crying was – i wanted to say isabella, please stop.

but. you left me speechless.

i didn’t even notice the transition of you turning into this little girl. i was so focused on you listening, obeying, complying that i didn’t realize that you were no longer nuzzling in my arms. you were running, dancing, singing with an unending thirst for life and i was just trying to keep up. i ran after you and your contagious love of absolutely everything and everyone. i wanted to say isabella, slow down, come rest in my arms, come drift to sleep beneath my gaze.

but. you left me speechless.

i knew with the doctors’ looks of concern for your sister growing in my body that things were going to change. that my life, your daddy’s life, your life, our life was never going to be the same. i felt terrified in a new way when she was born. with you i was terrified of you being so much bigger than life. with lucia, i feared the face of death. and, isabella, i feared that you would have to experience excruciating pain. i was suddenly whisked away from you into doctor’s appointment after doctor’s appointment after doctor’s appointment. your abuelita, papa and nana all filling in the gaps that i was leaving in the wake of my motherhood. i found myself fumbling through it all in a haze. wishing i could be with you as i sat in countless waiting rooms. bracing myself to hear good news or bad news i would think of you and your shingin smile. and i wanted to say – my sweet precious baby, i miss you. and i wanted to scream: i’m sorry! i am so sorry! i want more than anything to be with you, to not be so miserably tired all of the time, to not be so stupidly filled with so much anxiety! i want so much to just be the mommy you once had. i wanted to scream: isabella, forgive me!

but. i was speechless.

i still remember like it was yesterday the day i sat down in the oversized rocking chair in your room and placed my hands on growing belly. you had been growing inside of me for about five months and i was talking to God about you. i begged Him that day to please give you a compassionate heart, a heart that empathizes with others and cares for others. He answered me. He answered me by placing in you a tender and senstitive compassion for those around you. your sister, your family, your friends…you care for the them first and for yourself second. how is that even possible at this age?! as i’ve watched you give your heart to those around you, i’ve wanted to say be careful. don’t open yourself up so easily. guard yourself or you’re going to feel pain. please, isabella, don’t get hurt.

but. you left me speechless.

you are five years and two months old. in exactly seven days you will start kindergarten. time has poured through our life like running water. you are a rambunctious little girl with an enormous laugh, an enormous sensitivity, an enormous love for those around you. you still love to sing and dance and imagine. your whining is as shrill as your pretend witch’s cackle. i believe you hold inside of you an endless supply of questions. you talk more than anyone i know. my bet is that you could play tag for 48 hours straight and still want more. you laugh harder and more freely than anyone i know. you dream of running as fast as a cheetah. you hope that in heaven God will turn you into a part-time super hero part-time mermaid and that you will walk amongst huge but surprisingly quiet dinosaurs. you are chocolate’s number one fan – you’d eat chocolate every minute of the day if i let you. your favorite color is blue. you long to be whatever age your older cousins are which leaves you perpetually disappointed. you give three hugs and three kisses and take three hugs and three kisses to and from lucia, your daddy and me every single night. when i say may God bless you and protect you as i walk out of your bedroom door – you’ve started saying it back to me – and my heart overflows.

as you walk out into this new world, i have so many things i want to say to you.

i can no longer keep quiet.

isabella, God is always with you. and i pray that He will show that to you each and every day you face this world with courage and love those around you. i know that you may not know or understand the fullness of His love right now, but I am begging Him to reveal it to you on your journey into growing up.

isabella, you have an amazing daddy. the best daddy that i know. don’t ever forget how fortunate you are to have him. though he is not God, God gave Him to you to protect you and guide you as you go through this life. lean on his guidance and advice and love.

isabella, your sister adores you.

isabella, you have an unbelievable family. your abuelita, nana, papa, aunts, uncles, cousins are all there to walk on this journey with you. hold their hands as you go.

isabella, i give you the entirety of my word that i will always be with you – you have all of me – whatever you need from me. you have me and my unconditional love from now until forever. i am continually honored and humbled at being chosen as your mommy.

whenever you don’t know where to run – run home.

and, finally…

isabella. i am so proud of you. the girl that you are now. the woman i know you will grow to be.

you have rendered me speechless.

energy for life walk 2013



it’s that time of year! the united mitochondrial disease foundation is sponsoring annual walks across the country in september in order to raise funds and awareness for a mito cure. we are putting together a team to walk in round rock, tx on saturday, september 21st. our team name is We Love Lucy! we would love for you to join us if you are available that day!

click on this link to join our team: http://www.energyforlifewalk.org/centraltexas/ilovelucy

event details:

Event Date: Saturday, September 21, 2013
Event Location: Old Settler’s Park
Registration Begins at: 8:00 AM
Opening Ceremonies & Walkathon Begins at: 9:00 AM

this girl is…a woman?


alright y’all, check it out … i’m gonna drop a beat here for you to listen to while you read below because i feel it really sets the tone for this post.

 it was saturday and it was nap time. the perfect pause in my day otherwise known as my golden hours of freedom. i lathered myself up in victoria’s secret bombshell lotion,


(because few things define me so well)

i misted my hair with straight sexy hair


(nobody wants just “straight hair” – amiright?)

i slipped on my 2.5 inch heels and headed out the door.

this hot little number was waiting for me outside:

Blog pic

 you haven’t heard anything till you’ve heard its sweet sienna engine purr like a kitten. i put on my larger than life sunglasses and bumped up the volume on my stereo…apparently the easy listening station of my childhood has now morphed into a hip mix of matchbox twenty and goo goo dolls – who knew they’d be so progressive?

my destination was, of course, the outdoor mall. i would normally go straight to my bread and butter stores…the loft, the gap, the dillards…but not that day. that day my waistband was feeling a little looser, the flab under my arms a little tighter, the bags under my eyes a little brighter. i decided to head straight for aeropostale, because why the heck not? i’ve been known to get a little trendy every now and then – add a little cardi to my cargos; toss a braided belt round the ol’ maxi. in college, i even worked at the express. they don’t let just anyone work there, people. i won 3rd place in jean sales for a summer season. i could match a denim to your arse in 7.2 seconds flat. but i digress…

aeropostale was my obvious first choice. now, it did seem odd to me that they allowed a bunch of elementary school children to work there, but i believe in teaching a strong work ethic at an early age so i continued on toward the frayed denim shorts. i picked out my size (the size every other lying and deceiving department store swears is the right size for my matronly curves), zipped straight into the dressing room to try it on and voila!

i was workin’ it. no. no, i wasn’t. but i do agree with the lady pictured above in that all men are officially dangerous. the point is, the stupid shorts got stuck around my thighs. as in, i couldn’t pull them up to where shorts normally go. they just got stuck there with me desperately trying to pull them over my abundant flesh.

and then i looked up. i saw myself  in the mirror. my hair deeply dyed to cover the grays, my tired eyes smeared with concealer the sephora lady suggested was made for “women my age” and my two thighs just hanging out like the two underwater hippo butts that face the crowds at the zoo (http://sazoo.org). and it hit me. this great epiphany, this piece of sky parting and lights shining down on my face and angel choirs loudly singing “you are not 18 anymore”.

and you know what? it kinda made me sad. because i miss 18 and 19 and 20 and 21 and even 25. i miss the ease of it. the skin tightness of it. the laughter in it. and the problems that came with it that were not really problems at all.

but i also realized that being 34 trying to cling to my youth is exhausting. that i am missing out on the beauty of the present trying to hold onto the beauty of the past. i spent a good portion of my youth trying so hard to make myself look better without realizing that i was enough. and i don’t want to spend another 10 years trying to rewind myself to that time. i want to fully immerse myself in today because i know that in another 10 years i will be mourning this moment wishing i had cherished it more.

so, i took the teeny shorts off, said goodbye to the little worker girl at the door who was all “like, totally have a good day ma’am”, let the “ma’am” roll of my back and headed toward the loft – a little place of mall where all the middle-aged women go to feel moderately sized and somewhat fashionable. and, darn it if the clothes aren’t perpetually on sale! though my husband may not understand it, i am forced by the laws of nature to love that place.

though this may sound like an ode to the loft. it’s actually an ode to my current stage of life. to living in the moment of now and learning how to appreciate and love it. and praying that i will always be able to see the good in the present and learn to let go of what once was.

p.s. driving a sienna minivan is a little bit of a harder pill to swallow, but i’m working on it, ok people?


seven years ago i fell in love with a group of girls. we shared treasured whispers in a semi-round circle. one would lean on the other much like the disciples in the last supper painting. they would come each week wearing melancholy and confusion on t-shirts, in notebooks and hanging from their lips. their questions would spill on the floor between us and flood the center of my heart. their commonality was an unmistakable desire to experience life. life with God. life without. life in the good. life in the bad. satiate a hunger. a hunger to worship. worship Him, worship youth, worship apathy, worship the boy down the hall, worship anything. each one tugged from side to side – fill life with good? fill life with pleasure? isn’t it all the same?

i felt so at home, so at ease there – in the midst of their quest for life, for meaning. my memory still fresh – the doubts, the longings, the feel of a broken heart. for one reason or another they felt free to lay these out in the quiet of a hallway corner. in my heart i loved them, thanked them each endlessly for their honesty, for saying the things my 18 year old self once felt. there was just something about this particular group of girls that caused my heart to knit itself to theirs. forever.

they are growing up now. i see them less and less each passing year. in fact, with most of them i don’t know what their life holds now. just pieces i hear through the grapevine, but not the whole of it, the truth of it. i know that they are in the process of shedding their youth and yet when i see pictures or see them in passing – i still see that familiar girl inside of them – smiling at me.

regardless of how much time passes, how much i don’t know of what they have lived – what mountains they’ve climbed, what peaks they’ve reached, what valleys they’ve laid in – regardless – i love them. at a particular point in my life, they gave my own pain, discomfort, loss, insecurity…they gave it all purpose. purpose to show them that i survived. that i made it. proof that even through the nights they felt would never pass, they would see morning. i became for a time, living proof that it, whatever it was, would be bearable. i made a commitment within myself to show them that this God i so adamantly held high before them is real.

these girls, perhaps now women, have lingered in my mind lately. maybe because i’ve crossed paths with a few, maybe because i’ve seen glimpses of their new life, reminisced about the old. as i thought about them and prayed blessings over their life, a thought came: perhaps one good thing that can come of this disease in lucia is that i will continue to stand as living proof for them to see that i will survive. perhaps as they watch me face this monster they will see in me an everlasting faith in God. a never-ending love of Him. even with doubts, fears, worries – the darkest nights – the heaviest tears. i promise to myself, to them, to all who can see that i will rise and i will praise Him. that though i may not understand Him to the fullest, i will love Him. perhaps through this messy drawing that is my life they will see glimpses of His mercy. and perhaps even if it helps just one of them hold tight till the morning light shines once again – perhaps then He will show me the beauty in my path.

amanda, jill, holly, kara, suzanne, liz, kalyn, kaity, kate, samantha, miriam – i know you may be on the highest of peaks or in the lowest of valleys. either way, i stand here for you praying that my life – any pain and any miracles that i experience – that they may all be a shining light for you. a promise, a reminder to you that nothing will ever separate you from His love.

i miss you.

now i will add the token melancholy song to this post. i would add a sappy christian song, but i’ve gotta earn my street cred back with them. so, here’s mumford & sons instead:



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i have to confess something to you: i am a fraud. i am not a mother who has this whole raising-a-child-with-a-genetic-disease-thing down, but i have tried to play one on this blog. i began writing my advice on how to be a “special needs” mom as if i had all the answers. i desperately wanted to have all the answers. i wanted to finally be THAT mom who has it all together. i’ve always longed to have it all together, you know? to be that mother who teaches her children from the book of leviticus while crafting corresponding biblical characters out of rice. you know, the one with all the answers about how everyone else should raise their kids. for once in my life i wanted to be there. to not be the one falling apart. but, these past few weeks something has come un-sewn in me. and i have realized. i realized i took it upon myself to be the seamstress. see, when lucia was diagnosed with mitochondrial disease i looked inside my heart and saw a dark pain – deep and furrowed in the corners. i decided to take my needle and thread and start sewing around and over it. tie it up with a nice bow – pleasant and easy on the eyes. make sure i limit my talk of how much i hurt. make sure i sound like i can handle it. make sure i don’t become a burden. i hurriedly patched and stitched keeping in mind what others would want to see. show just enough sadness to still make me human, but always finish it with a smile. tie a knot tight enough and maybe the anger will not spill out. everyone knows there are other moms living through much worse so make sure to sound grateful enough, joyful enough. 

but God spoke clearly to me recently. He said that anything good, anything pleasing, anything beautiful that comes from my life will only be from Him. not from my own efforts, my pride, or my fear of everyone seeing just how vastly broken i am. and it will come – His beauty will come – when i am transparent and i place my heartache in plain sight. because then it will be His faithfulness and His healing evident to all. in my weakness, He is strong.

i don’t know exactly what it was, but something tugged at the thread tied to my heart and slowly is has come unraveled. i look in the mirror and see my heart – raw bloody flesh – open and seething with that old pain now turned into a nest of snakes with fiery eyes fueling an anger so large i don’t know how to contain it. rather than being that mom who has it all together, i am the mom crying on the bathroom floor. i am the mom screaming at the slightest of inconveniences. i am the mom with her head in her hands wondering what the hell is happening.

and so, i’ve started asking Him. what is it that You want from my life? what is that You want from lucia’s life? what is it that You want from us, this family? i’ve started a genuine and determined search for answers. and God has mercifully started responding. i’m not saying i know the whole of it, but i find comfort in the answers He has provided so far.

first of all, He wants me to be honest. honest with Him, with myself and with those around me. despite my fear of how people will see me, despite my fear of looking like a total burning train wreck – i’m going to be honest:

i am scared that lucia will die. and i don’t mean just once in a while. i mean, all the time. the whisper of her possible death is a constant murmur in my mind. don’t let lucia get sick or she might die, make sure she eats enough or she might die, take her to as many doctors as possible or she might die, don’t be so overprotective or she might die, don’t worry about her dying or she might die.

on top of this whisper is another whisper: don’t think about lucia so much so that you get caught off guard and isabella dies. you know how life takes those unexpected, ironic turns of events.

i am afraid that mitochondrial disease is more than i can handle as a human being. perhaps another mom with greater faith and greater whatever it is that helps you deal with an unknown prognosis – perhaps she would have been a better choice. not me. i honestly don’t feel that i could survive the loss of my daughters. they are my treasure…and i think that is my problem.

this sunday our pastor gave a sermon that seemed eerily tailored to me. the verse he preached on:

19 “Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. 20 But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. 21 For where your treasure is, there your heart will be also. matthew 6:19-21

he said that we recognize our treasure by asking: what things on this earth are we terrified of losing? for some people it could be money, status, prestige, etc. for me i instantly knew it was my daughters.

from the moment each one was born i placed my heart entirely in her. and i am terrified of losing them.

our pastor listed five things that will happen when we make our treasure something earthly:

1. my soul becomes vulnerable to the unpredictability of life – check!

2. i will shrink back and miss out on treasure in heaven and the rewards that come with it – check!

3. i will cease to look like Jesus and look more like the world – check!

4. the world will no longer be influenced by my presence – check!

5. i will no longer walk in joy or power or authority – check!

here’s the truth: i have this problem because i love my daughters more than i love Jesus. i would choose a day with them over a day with Him. i don’t trust that He has their best in mind all the time. i feel that i have to take it all on myself to protect them because i feel that through lucia’s illness He somehow failed me.

so, as i dare to be transparent and open, i’d like to ask you to pray for me. pray that i will learn to love Jesus more than anything and anyone in this world. pray that HE and only HE will be the surgeon who once and for all rips out and heals this pain and anger in my heart. pray that somehow His beauty will shine through this broken, messed up mom.

coming to terms with the terms (chapter 1)



at one point in my childhood i loved the see-saw. at recess i would eagerly accept any of my classmates’ invitations to go on it. i’d go up and down, up and down squealing with joy. sometimes i’d even close my eyes and fling my head back to feel the rush with even more intensity. surprisingly, whichever girl was see-sawing across from me seemed to find more joy in watching me slam down hard on one of my ankles after her abrupt jump off the bottom. i would cry. she would laugh. ps: i was not popular.

third grade was possibly the worst of the worst school years. the music teacher believed my first name to be Armadillo and adamantly refused to change it – much to the delight of my fellow third graders.  i was at my peak childhood weight and had a short, boy-cropped haircut. the day after my mom took me to get my hair weed wacked, classroom heartthrob daniel stacy yelled “YOU LOOK LIKE A BOY!” the minute i walked through the door. no matter how many times my mom insisted that i looked precious, the rest of the world made sure i knew better. my mom even went as far as suggesting that the entire classroom full of kids made fun of me because they were jealous of me.

3rd grade

i give jealousy a 2% chance of being the reason for my elementary school woes.

my lack of popularity grew so great that i would just stand next to my teacher the entire length of recess. just me and mrs. rockas awkwardly hanging out for 30 minutes. i stood there for the sake of companionship and self-preservation; she stood there because they paid her to watch the kids play. i confidently considered her my best friend.

then something interesting happened: my mom became good friends with one of the special education teachers at my school. she eventually became a sort of a mentor for me for the remainder of my elementary school career. her name was ms. marcie. she was funny, kind and bravely spoke spanish aloud -something i had learned vanquished your chances of keeping any friends. i looked up to her and respected her. she taught me how to swim and even helped me become a student patrol (oh yeah, who’s laughing now popular kids?!). but, the most important thing she ever asked me to do was to be her assistant in the special olympics. i proudly helped her three years in a row and got to know all of the students in the special education classes.

in fact, i got to know them so well that as i would stand next to mrs. rockas every day at recess, the students in special ed would walk or be wheeled right past me and would happily look and wave in my direction. they became my friends. i have a vivid picture in my head of one little girl in particular. she was in a wheel chair, could not talk and she had the curliest brown hair i had ever seen. she was the most excited to see me and i her. she would effusively smile and wave at me until i would run over to hug her…and touch her curly hair, of course, because it fascinated me.

something was clearly written in my heart those days…

people with disabilites may have healthier hearts than those who are able-bodied.

despite this, i grew up just like most every girl – chasing labels of “pretty”, “skinny”, “smart”, “good enough”…etc. my heart was so lost and self-involved in my search for approval that i even became the type of person who made “short bus” jokes to my friends. you know – as in the bus that disabled children ride to school. if my friends said something stupid i’d reply with something like “hey, did the short bus accidentally pick you up today?” or “hey, i think you need to ride the short bus home”. clearly mocking those children who were disabled as if they were “less than”, as if being disabled was synonymous to being stupid and on top of that choosing not to remember that at one point in my life those kids were the only ones who chose to be my friends.


i walked up to the ticket booth at morgan’s wonderland (a beautiful theme park designed for all abilities) and asked for 3 tickets: one for me, one for isabella and one for lucia. the lady behind the counter asked if either of my girls were “special needs”. i thought about it for a minute and replied “i don’t know”.

is lucia special needs? the medical community as well as the education system seems to think so. but outside those two communities i’ve only heard the term “special needs” used more often than not in a derogatory way. the realization that one day one of my daughters might hear the term “special needs” or the like in an offensive way made my heart shatter into tiny little pieces.

“you are so special needs”
“i did something stupid, i must be special or special needs”

the term “special needs” seems to go hand in hand with…let’s all say it together…the term “retarded”. the medical community uses “mental retardation” and “growth retardation” as viable terms. but the rest of the world does not.

“i am so retarded”
“he/she/it is retarded”
“you are a retard”

i froze at the morgan’s wonderland counter. is lucia “special needs”? not my daughter. not my precious jewel. not my baby who i actually do consider quite special.

why has this word “special” been so twisted and degraded? something once used to praise one’s uniqueness has now become a sort of a curse. when did the words “special needs” become a single adjective to describe a person? when did they stop being an adjective and a noun? why don’t they ask me if my daughter has any “special medical needs” instead? why are they labeling my daughter? who gave them the right? the thoughts swirled and sadness spilled over in me.

i thought: this sensitivity in me. this raw nerve. that, if anything, is a special need. a new and special need i now have as the mom of this beautiful child. a need to know that i can protect my daughters, that i can make the right decisions for them, that i can hold it together when things get hard. if anyone here is “special needs” – it’s me.


i’ve thought long and hard about these labels and terms. i’ve read many blogs and commentaries written by vocal mothers who are fiercely against the use of any of these words in a derogatory way. and i agree with them.

but, here’s what i’ve chosen as lucia and isabella’s mother: i’ve chosen to let it go. i’ve mentally removed the stinger from the words. i choose to see the words as merely words. they are words with no meaning unless i allow them to have meaning. i am the only one who chooses whether these labels stick or not. and i one day hope teach my girls that labels hold no value. whether it be “special needs” or “pretty” or “retarded” or “smart” or “successful” or “dumb” or “fat”. i ask God that they will hold no meaning in my daughters’ hearts. my hope is that they won’t waste years of their lives chasing or running away from these empty labels. i pray that they will each know in a concrete way who they truly are: a forgiven child of God.

for now, the term “special needs” gets lucia better medical insurance coverage, better medical attention, better therapy, better education options and a free pass into morgan’s wonderland (which, by the way, is one of the most amazing places i’ve ever been). the term serves a good purpose for lucia right now and, for that reason, i’ll use it liberally and boldly. but “special needs” is not what defines lucia.

lucia is a girl designed and crafted by the hand of God. she is one of God’s masterpieces. word.

*i strongly recommend the book “you are special” by max lucado. it’s a childrens book, but i read it often for my own benefit and ask God to be like lucia (yes, a character in the book) and not let either dots nor stars stick to me at all.

how to be a “special needs” mom (introduction)


hi. if you’re reading this, you probably just became the mom* of a child with considerable medical needs and/or disabilities and you’ve been thrust into the waters of confusing medical terminology and convoluted answers regarding your child’s future well-being. doctors are hurling may-not-learn and may-not-talk and may-not-walk and may-not-live at your face. your mind is racing with whys and hows and i can’ts. you cling to your precious child as you’re tossed in these waves of confusion, anger, disbelief and a deep-seeded feeling of “someone’s made a terrible mistake here” but you won’t dare put that into audible words. you are desperate to swim to shore, but where is the shore? wait, is there a shore?! you want to scream out “SOMEONE PLEASE HELP ME!” but you look around and sense that you are all alone. everyone else, it seems, is partying it up on a distant beach – drinking mai tais and soaking in rays. you pant and heave and try to calm yourself down; decide your best bet is to just stay afloat.

is that you? are you that mom? yes? good! i’ve been longing to talk to you. i dream (literally) of the things i would say; ask God to sand and polish my words – make them a salve for your raw wounds.

i have to tell you upfront that i can’t take you to shore. you’ll have to find that yourself. but, i want more than anything to show you that staying afloat is good, but it’s not good enough. i want to show you where you can find a raft and even a sail boat for your journey! more than anything, i want to give you a great big hug (even if it’s virtual) and whisper this in your ear:

you are not alone.

that may be hard to believe at this particular moment as you float there in the dark cold ocean, but it’s the truth. i ask God, from this moment forward, to shine a light so you can see the circle of love and hope that surrounds you.

my beautiful lucia, my second daughter, has been diagnosed with mitochondrial disease. she has weakness in her muscles, she’s delayed in most areas of development, she has a feeding tube, she has leg braces and, very soon, a walker, and to top it all off the progress of her disease and her prognosis are completely unknown. we may have a full lifetime with lucia or we may not. because of this, i find myself unintentionally qualified enough to speak to you just as you find yourself unintentionally a member of a sisterhood of which you’ve never heard or ever hoped to join.

by writing this post along with the next ten, i hope to, in the very least, draw you a rough sketch of where you might find your life raft. i don’t claim to know all that your journey entails nor do i have it at all figured out for myself. i still break down sobbing on my bedroom floor every now and then. but i do relate to how you feel. i’ve been in and still am in your shoes. i hope you find the portion i’ve experienced and learned to be a source of encouragement for you.

at best, i hope you’ll find me to be a friend. but not the kind of friend who is too uncomfortable to tell you that you’ve got spinach between your teeth or that your muffin top is hanging out over your jeans…but the kind of friend who will have an open, honest and understanding dialogue about the complexities currently being woven in your heart.

*if you are reading this, you may also be a friend or a family member of child with significant medical needs and/or disabilities. if so, i’m glad you are here too! i hope to offer you a small glimpse into the painful yet beautiful reality of a “special needs” mom.