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Friday, October 25, 2013

.Dear Special Needs Mom.

I see you. Yes, you, the tired, worn out mom, the one who has held onto hope and had it snatched from your palm more times than you can count. The mom who has been to countless specialists with her child, and learned to speak the language of special needs - the big words that blanket a diagnosis but that could never contain the absolute delight and wonder that is your child. I see you sitting up late at night, hunched over your laptop, fingers tapping over the keys, your eyes searching and reading - your researching this life your child has been handed. I see you pour over new tools and therapies. I know that you know that you are your child's best advocate, and how essential every piece of the research puzzle is. I see the searing tears as you read yet another description and can check down through everything for your child - another reminder that this diagnosis is real. I see the moment that you release denial and how beautiful and awful it is for you. Mom, I see what you typed into that search bar, I see when you questioned why this happened to your child, and I see you blink back tears as you wonder again if you had done something wrong, if somehow you had brought this on your baby.

Mom, I see the questions that you have that never get answered. I see the anger, and the heart break behind the plastic smile that you bravely put on - so that others won't feel weird around you. I see the days where you are just surviving - just a series of motions to get through until bedtime, and I see the pain and the guilt you feel for those days of just making it through. I see the way you look at your other children and worry that they no longer get enough of you. I see your whole body finally relax as you peek on your sleeping child, and know that you have made it through another day. I see that your are thoroughly exhausted in a way that you never knew was possible. I see the lines around your eyes, and bags and puffiness, and I see you see them, too, and grieve your youth and what used to be. I see how completely spent you are at the end of everyday, and yet how hard it is to find rest. I see the sleep deprivation, the nights when you stay up far too late on the computer, or just sit in front of the TV enjoying a moment of solitude, and I see you get up far too early when sleep never comes. Those mornings, when you wake up, and you realize that it is another day, and you have no idea what the day holds for you or your child - whether it be a seizure, a tantrum, a first word, grueling therapies, or a day like none other before, and you pray to God to give you mercy and grace for the moments to come, yes, I see that too. I see the days where you are so hard on yourself, because you become frustrated and discouraged, and you know you should be more empathetic and do better, and you feel this way sometimes even when you are giving your all, because sometimes your all just doesn't seem like enough.

I see the days when you hardly eat, because there is no time, and you are so focused on trying to figure out what your child will eat. I see the pots of coffee that you sip alone, the ones that used to be shared with friends. I see how isolation has become your company, and how you escape into facebook just to forget for a few moments the chaos around you. Friendships are complicated now, your heart hurts when you do not get invited out and the other moms do. But your heart also hurts when you do get invited out because you know that your child needs you in a way that only you can give. I see the way you miss out on activities and fun because it is easier to stay in your home, then take your child out and face the stares, the judgments, the meltdowns. I see the way that you have to exactly execute every trip to the supermarket, the library, to church. I know you calculate in your head whether it is worth it to bother doing the errands that day or can it be put off for another, when perhaps you are feeling courageous, less tired, not overwhelmed, but then those days do not come, and you suck it up and do it anyway.  I see when you do brave a restaurant, and the way you hold your shoulders tensely, just bracing yourself for a nightmare. I see you wince when your child flaps, and screams and bangs his head, and vomits because the texture of the food was not just right. And Mom, I see when you pretend not to notice the stares from the table next to you and the whispers about your parenting abilities and the fact that your child is way too big to still be strapped into a highchair. I see the way your heart stings, as you pull your mouth into a tight smile, stroke your child's head and give a kiss that you do not always feel like giving. I see the way your heart breaks for your child when the world looks on cruelly. The pain is intense and takes your breath away, and I see that.

But mom, more than anything, I see how much love you have for your child, love that oozes out of every pore of your body. I see the belly laughs that only your child can illicit, the joy that radiates from your home, because you were given this gift. I see the ways your life has changed, and the selfishness that has been weeded out, as you give of your self daily for the sake of your child. I see the way the world has taken on a different hue for you, and I see the compassion and the tenderness you radiate when your eyes meet the worn out eyes of the mom with the tantruming kid in the grocery store. Gone are the judgements of yesterday, because you have been in her shoes, and you know that while a child seems typical on the outside, the inside may tell a different story, so you breathe grace at that mom and pray for the same in return. Mom, I see how painful this journey can be, but I see your strength and I see that you truly wouldn't change it - any of it. I see you rely on Jesus in a whole new way, and I see that truly He is your strength. I see the way you cherish the little moments and celebrate things that most people will never notice. I see the way you appreciate life in a whole new way, and I see the new softness that you carry with you. I see you becoming the mom you were intended to be, and I see you making a difference in this world. I see the way people watch and notice how you live, and I see how intentional and purposeful you are with the moments gifted you.

Mom, I see you, because I am you. You are not alone, and neither am I. I am a special needs mom, and I am with you in this beautiful, agonizing, amazing, and grueling journey that we have been chosen for. And, Mom, I say in agreement with you, it's all worth it - every little piece of this journey is worth it. And today when I pray for strength and grace and mercy for me, I pray the same for you. Our lives are different than we imagined, but sometimes different is better. Be kind and patient with yourself today, take heaping spoonfuls of the grace held out for you. Don't compare yourself to her, her journey is not the same, and that is okay. What looks more fulfilling for her may only be a part of the story, focus on yours. Take care of yourself and find a place of nurture and peace and safety, just like you do for your child. Please know that your love is making a difference, even when you feel inadequate, exhausted, frustrated. When you feel weak and impatient, know that He will keep giving you the strength for the journey - you are strong enough. Love is the greatest gift you can give. Give it freely and don't sweat the other stuff.

Mom, I see you, and you are enough.



Anonymous said...

Hi there, I read your blogs daily. Your story-telling style is witty, keep it up!

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