Grace in the cracks

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Before my son was 8 months old he had no trouble sleeping. What I mean is, he slept like every other baby. In the early months, a couple times a night he would wake to nurse. Then came a few longer stretches of sleep. Usually rocking would work or the amazing mechanical baby-swing. Wind it up and he was as good as gold.

I thought we were nearing the edge of the woods in the sleep deprivation world. My mom always said you can endure anything as long as it doesn’t last forever. Her words rang in my ears those 3 a.m. nights that seemed endless.

And yet, somewhere around Christmas his sleeping habits grew worse, and so did mine. Frustrated and foggy-brained, I went into survival mode. Just make it through this day. Steal sleep in the cracks. An hour here, a cat nap there, or just close my eyes for a few minutes.

As he out grew the baby-swing, he struggled to sleep through the night. When rocking didn’t work even his naps grew shorter. He woke up crying most days and I scooped him up, weary and defeated, to cradle him on my chest while we both laid on the couch.

My sweet boy would often finish his naps cuddled safely in my arms. This forced me to stop everything else and just rest and be present. His breathing became steady and calm again, as I watched his little body relax into sleep. It was in these moments two verses came to mind as I marveled over God’s way of taking care of me:

“He makes me lie down in green pastures,

He leads me beside quiet waters”

 Psalm 23:2

 

“He gives strength to the weary and

increases the power of the weak”

 Isaiah 40:29

 Flock of sheep, New Zealand, Pacific

            God made me physically rest when I needed to. He does this in a way that isn’t militant or harsh, but lovingly.

Tenderly.

Like a Shepherd over His sheep, God knows what is best for us before we do. And I remember laughing over the irony. I was trying to help Jesse rest as God helped me rest. I was a child in need of a nap!

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We sometimes forget how important physical rest is and that it can affect our spiritual health as well. We think we can “do it all”. It humbled me to find out that I can’t. Something has to give. It was about this time that Jason and I started praying at night for our son, and for us as well, to have the gift of sleep. I didn’t realize sleep as a precious gift until it was taken away.

And rest came in ways I didn’t expect. Even though the nights were still interrupted with his hyperactivity, God’s grace took shape on that couch during nap time. There were dishes in the sink, laundry to be washed, and a list of to-do items, but the only thing that mattered was the only job I had in that moment: to be still.

And that was enough.

The Lord taught me that I often forget how much I need Him to take care of me as I take care of the sweet, autistic son He has entrusted to me. God delights in ministering to our hearts as well as our physical bodies! He reminds me that He will provide grace even in the cracks.

Grace upon grace,

April

The Life We Never Expected

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          The Life We Never Expected by Andrew and Rachel Wilson is an honest confession inside a home with two special needs children – both have different forms of autism. The Wilsons write about real life experiences mingled with sadness and hope. They taught me that it is okay to grieve the dreams I had envisioned for my son; the things all parents look forward to for their kids: little league sports, college, independent living, marriage and grandchildren. Some of those may eventually come true, but right now a typical life is not one of them.

Andrew, a pastor in the UK, is transparent with his own struggles, coming to terms with the life he never expected. All the “big” ministry opportunities he envisioned, traditional parenting, and a regular life, was thrown out the window. Rachel writes in a vulnerable voice, acknowledging that this is hard and messy; but they find moments of humor and sweetness too.

Having a child with any kind of disability is isolating. I feel like I’m in a foreign land most days, unable to relate to another parent’s struggles because we are on completely different plains. When I’m not in the right mindset seeing my son’s typical peers wrecks me. This book has been a lifeline to help me remember that I am not alone. Sleepless night after night? Yes. Multiple therapy appointments? Yes. Hyperactivity, missed social cues, and seizures? Yes, yes, yes. Sometimes it’s comforting to identify with someone else going through a similar situation. I highly recommend this book as an oasis for any parent with a special needs child. Furthermore, family, friends, and the church can glean a helpful inside look on what daily life is like in upside down parenting.

The hope Andrew and Rachel possess as believers is contagious. They live with a mindset focused on eternity – in a world free from autism, epilepsy, wheelchairs, tube feeding, or any kind of suffering. One day their precious children (and mine) will have fully functioning minds where normal conversation is possible. One day they will be finally and completely healed. The Wilsons have given me a breath of fresh air with their raw and truthful words. For that I am grateful.

Here is an excerpt from Rachel:

“We are, at best, sailing desperately into the fog, with ever-changing winds, choppy waters, blank maps, and no real idea what we’re doing.

But God is the Captain. He is the navigator, mapmaker, and expert […] as uncertain as our voyage is, there are solid landmarks ahead that are knowable and concrete because of the Captain.

[…] I know He will journey with us to the very end, at which point everything that is perishable and incomplete will be gloriously resurrected and healed.

So I fix my eyes, not on what is seen but on what is unseen. And I take a deep breath.” (p. 148)

 

Grace upon grace,

April

 

 

The Autism Label

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I guess I already knew. Jason and I had been using this term to describe our son for quite sometime: autistic. Something about seeing it the other day in black and white confirmed by the education specialists just felt like a punch in the gut. My son’s autism was now “official” for all educational purposes.

The diagnosis we were given when he was a baby was “developmental delay” and “hypotonia” (which just means he has low muscle tone). I already accepted this. My little guy has always had to work a little harder and longer to accomplish a milestone task. He didn’t start walking until he was 23 months for goodness sake.

The last week or so has been compiled of meetings/interviews/observations with what I like to call his “team”, to go over his Individualized Education Plan (IEP). I am so thankful for these women who have made it their professional calling to help kids like him. His team includes his speech therapist, occupational therapist, physical therapist, specialized Pre-K teacher, and Special Education coordinator from the public school system. The supplemental helpers are his teacher aides (who are fantastic), the Autism teacher, his peers, and basically any other teacher or staff member at the school that he has befriended. He knows more people in the school than I do which I find hilarious and comforting. They all know him and love him and can see what I see in him.

At the same time, recognizing that the label of Autism is now forever attached to my son is hard to process. It explains why he acts the way he does, but Jesse is a lot more than a stereotype too. As I went over the confirmed results with his team I wanted to cry because I could no longer put a veil over the obvious, admitting my son has a disability. There is grief for the parent of a special needs child because I want so much in life for my son just like every other parent. I want him to speak in sentences, to hear ‘I love you, mom’, to understand why we celebrate Christmas and get crazy excited about it like other kids, to pretend to be a fireman or superhero running around the house saving the day!

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And yet there was relief in finally coming to terms with his autism. For so long I have wrestled with feeling like a failure as a mom because he hasn’t been able to keep up with his peers in skill level. I thought part of it was something I wasn’t doing right. It isn’t my fault and it isn’t his either. My son has autism. The consolation of having an explanation for his delays, quirks, and irrational fears and the sadness of the reality is an odd emotion to work through.

When the Special Education coordinator looked at me and actually told me I wasn’t a failure I wanted to throw my arms around this almost stranger and give her a huge bear hug. Did she know I needed to hear that? She must have, it’s her job. I’m sure she has seen that look in parents’ eyes before when something really hard to accept becomes concrete. This is my life and I mostly try to focus on the good rather than dwell in self-pity over the hard. Yes, Jesse has autism, but it looks different in each child. He is the happiest person I know and loves to laugh. For the most part he is unaware of himself, which is so refreshing. He doesn’t know he is “different”.

What I want other parents of special needs children to know is that it is not your fault and you a not a colossal failure in parenting. The way we teach and raise our kids just looks a little different. Show yourself some grace and I when I forget this, tell it to me too. Our lives are filled with a bit more misunderstanding from outsiders, worry, and stress. But I know you love your child ‘to the moon and back’ as the saying goes. You wouldn’t go to the insanely long IEP meetings if you didn’t. I know that you take her to all of the doctors’ appointments, the neurologist, audiologist, therapy, and playgroups to help your baby. Breathe a little because you are doing the best you can so give yourself some credit now and then. You wouldn’t do all of this if you weren’t an amazing parent! Today, count the blessings you see in him. Look for it because I know that through the hardship there are silver linings you can be grateful for. I see you today and I’m rooting for you.

Grace upon grace,

April