5/09/2014

May 10

There are dates that come and go, and you just don't even think about it. Then there are dates, birthdays and anniversaries, that you remember for joyous reasons. Maybe, like me, you randomly remember the date you graduated college (May 16th) but can never remember exactly when in April you got engaged.

But then there are dates like May 10. May 10, for me, marks pain and heartache. Two syllables that sum up the grieving of who I thought my child might be, the hectic way our life turned from low key and a lot of home chilling to crazy running from this to that to the other thing that's next.

On May 10, 2013, upon recommendations resulting from his 2 year well child check-up, Jason and I took Roger to an evaluation to assess why he wasn't talking at all yet. We just thought it was a speech delay and we'd learn some tricks to encourage him to verbalize the things we knew he understood. Instead, we were gently informed that they saw many markers of autism and we needed to start the process of getting him both professionally diagnosed and then qualifying for continued services at the place of that initial evaluation.


After the appointment we just weren't ready to go home to our 7 month old daughter,
because we weren't ready to feel like life would just keep moving forward.
So, we took Roger for a little date and watched him marvel at--and inhale--his first ever donut.

I'm amazed I heard any of it, because one word, autism, literally felt like the entire world slowed down. I was listening through a sea of syrup and I could feel my heart beating in my ears. I was surprised to hear it continuing to work because it felt like everything just stopped. Because while they were careful to say "some indicators" and "nothing is official," and while I had never even CONSIDERED the possibility of autism, when her eyes were so serious and she said the world so cautiously, careful to infuse her voice with a certain lightness as though that could stop our souls from being crushed, I just knew.

May 10th will always mark the day that changed our entire lives.

This, then, is a letter to my son, on the eve of May 10 one year later.

***

Dear Roger,

It's been one year. Tomorrow marks 365 days come and gone since that day. The hardest day.

We can be honest: there has been great pain and suffering for our entire family since finding out your diagnosis. Your third year of life, aged 2 throughout, will always be touched by that event when it felt like the ground just opened up beneath us in that little Kindering evaluation room.

And yet, my beloved son, there has been sweet freedom, joy amidst the sorrow, sneaking into our hearts in ways we didn't expect. Your daddy and I have often discussed how, yes, it shocked us to hear your diagnosis, but it was God's grace to us because for the first time we felt like we really saw you.

It's interesting to me that the puzzle pieces are the official autism logo because it was like suddenly all of these scattered parts that hadn't seemed significant before came together in one big picture and it just made sense.

You see, us hearing that you had autism changed nothing but us--you were always the same bright, joyous, funny, intuitive, and autism affected little boy. We could just understand you better. It made sense why you loved your green ball but never wanted to roll it back and forth with us, or why you had zero interest in communicating with us in any form yet loved us and genuinely enjoyed having us around.

And with that diagnosis and understanding, by the grace of God, came the precious gift of therapy, classes, and many tools and training to not just help you grow but to help us be the best parents to you that we could possibly be.

But Roger, to know you is to love you. You are amazing. I am unabashed in my gushing about you. I have always just assumed that you are amazing in my eyes, duh, but it's silly to think that you're more special than any other boy. Like it's my job to keep us both humble and play it down that you are a pretty great kid. [FWIW, that is not humility and it was stupid of me to think that way.]

Jesus put the kibosh on that. You see, a great fear of mine after your autism diagnosis was that you'd have this label and we'd just be treated differently, that people would at worst avoid you and at best reduce you to that one part of you, thus making you less the entire, wonderful boy that you are.

Then, the opposite happened. People felt freed up to tell me that you were a kid who made a great impact on them, that it's not true that people are enamored on the spot with every kid, but with you they are. Friends told me that, while heartbroken over your diagnosis, they needed me to know that you are an incredible boy and that they loved you in ways that surprised them. Like, we all love cute kids. But there's something about you that just enraptures people beyond your dazzling smile.

Then I started to notice that every single diagnostic and progress report we received--and with autism there are a LOT of evaluations and reports--had a common refrain: "Roger is a very sweet, engaging, fun, delightful, and easy boy to work with, truly a joy to get to know." I assumed that every kid has this in every report because it was in every single report of yours (seriously, about 12 different reports from that many different people and different organizations and EVERY one said the same thing). But then I realized that, no, not every kid gets that in their report. While every kid is loved, not every kid at Kindering who ages out upon turning 3 causes the entire room of teachers to cry because saying good-bye feels impossible. BUT YOU DO. Because you are a sweet gift of grace, Roger, to many in this world.

We all want life to be perfect. We all pray for healthy babies. I want life to be perfect. I prayed for healthy babies. Free of pain and suffering. Easy, peasy, happy grace filled lives with joy and dancing in fields of flowers. Literally my fantasy, honestly.

In fact, my greatest fear was that something would be wrong with you. I was very cautious and obeyed every possible rule in pregnancy. I slaved away trying to make breastfeeding work, despite my body's simple inability biologically to do so, because I feared impending leukemia if I couldn't. I fed you healthy food, not because it is wise to do so, but because I was trying to earn a healthy kid. I hardly slept for the first two months of your life for fear that SIDS would steal you away in the night. I was so, so scared that something bad would happen.

Posted late in the day on May 10, 2013 because I had no words of my own;
just pain and new, acute awareness of my desperate need for Jesus.

And then it did. The reality of your autism diagnosis is that something bad happened to you.

I couldn't stop it.

And, though people who don't even know us are convinced that it's because we let you eat Dave's Killer Bread at breakfast and Goldfish crackers at church when you were younger, I know now that there's nothing I could have done to prevent this. Your daddy was just like you at your age and there are other very significant reasons to confirm that this is genetic. Nothing I did or didn't do affected you; rather, when God knit you together in my womb he sovereignly chose the DNA that would one day lead to this medically diagnosed affliction.

While the greatest heartache of my life came that day, my darling son, it wasn't because how I felt about you changed at all. It was simply that God allowed me, far ahead of the curve for many parents, to see that your life is his. His plans for you are good. Even though autism is a result of sin and a fallen world, I trust that God is good in allowing it to afflict you, to afflict me, to afflict our family.

I cleave, hope beyond what my heart can bear, to these words:

[26] Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words. [27] And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. [28] And we know that for those who love God all things work together for good, for those who are called according to his purpose. [29] For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. [30] And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified. (Romans 8:26-30 ESV)

What I have learned throughout the myriad suffering in my own life and now the pain which I cannot escape of seeing you suffer is that God comforts me with his presence in suffering in a way that simply is unmatched in every other area. He is present when you and I are laughing and snuggling and delighting in one another,but I feel his presence, the warm cloak of his strong, fatherly bear hug, when I sit in the truth that I have pain that only he can reach into and comfort. The pain that is always there but often denied and tucked behind walls of defense is where Jesus, at times brick by brick and at others like a Holy wrecking ball, breaks in and tells me to no longer defend myself. Simply to feel that which I feel and to feel with him there. He'll move my feet into obedience spurred on by love when it's time but that cannot come before sitting with him in my pain. God is not good in spite of my pain; rather, he is good through my pain.

And so, Roger, I cannot promise you this will be easy for you. I cannot tell you that you aren't allowed to feel your own anger and frustration as you grow older and increasingly realize that you are, indeed, afflicted and that the sovereign God of all the universe chose and allowed this for you. I cannot escape the reality that your own wrestling with God may not lead to receiving comfort as rapidly as I hope you may. I cannot make you love Jesus.

But Jesus can. I know this because I cannot make me love Jesus. Yet, by grace I couldn't resist and power beyond my ability to conjure up, the Holy Spirit has removed my heart of stone. For 25+ years I fully believed God to be the Ultimate Abuser. I said all the right things about God, to be sure.

In my hardened, protected heart, though, God was a power hungry tyrant who used me by allowing man to torture me so that the people he really loved could see me be ok and believe he was good. But then Jesus broke into my heart in the Titus 2:11-14 way, in the revealed truth of Romans 5:6-11 way, and I cried out in the Mark 9:24 way in response. Through all of that, God the Father, a perfect surgeon, chose his means in my life of fulfilling his Ezekiel 36:26-27 promise.

See, for me to be where I am, to capital B, bold-face Believe what I now believe, came through God's tender, skillful hand in my life, at work in ways that were not the simple, clean, painless route I would have chosen. How dare I want any different for you?

On May 10, 2013, the world did end. My perfect world crafted in my heart for you came crashing down. In its place God allowed a new world, a better world: a real world, this time with the real him in it, able to work in his power and not as a puppet catering to my marionette show of a life of ease.

May 9, 2013

His way is better, Roger. As I write this it is May 9, 2014, and my 1 Year Ago photos on TimeHop remind me of the time known as B.A. (Before Autism). I know that who I am as we commemorate year 1 A.A. (After Autism) is infinitely more able to rejoice in my weakness because this year God has made himself strong. With a mighty arm he directed the tides and currents that crashed us against himself, and I look down and see my feet anchored to him in ways they simply weren't in the years B.A.

I love you, Roger. And when you are old enough to read these words and start to understand them, I pray you already know from the practice of our familial life that it is not empty, redundant refrain when we sing:

God is good // all of the time // all of the time // God is good**

And openly to you and to anyone I say to Jesus: Thank you for tattooing this truth from Spurgeon on my soul, throughout my life and particularly the last year.

For I have learned to kiss the wave that drives me against the Rock of Ages. 
Love,
Mama


** I cannot heartily enough recommend spending three point five minutes of your life to listen to this song.

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