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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.

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