Grace in the cracks

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Before Jesse 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 Jesse 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.

Jesse 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

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            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 Jesse, 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 Jesse’s 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

 

 

May Mayhem: the 5 things I learned

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May was a little crazy wasn’t it? End of the year celebrations and preparations for the fall school year all clash in one month. I am ready for the rhythm of slow with no-where to be by 8am each day thank you very much. I could tell the teachers were drained too, all pushing toward that finish line. Well, summer is here. But before you start applying sunscreen and head to the pool, here are a few things I learned in the mayhem of May.

  1. Sugar makes me tired.

I took a three-month hiatus from coffee recently (who was that crazy person?) to taper off from caffeine. Well the problem it turns out wasn’t necessarily the caffeine as it was the sugar I put into my coffee. Sprite causes energy crashes too and that’s caffeine free, but loaded with sugar! So, I have acquired a taste for coffee without sugar and now all is right with the world.

 

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“Finally brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable, if anything is excellent or praiseworthy think about such things.” -Philippians 4:8

  1. Memorizing Scripture can be easy!

Do you struggle to memorize Bible verses? Well, I did and one day I saw a picture on Instagram from Mary Kate Robertson who wrote a verse on her hand. I thought it was a great idea to have a daily reminder on something I see everyday – my hand or wrist. I wrote about how I try to do this and I hope you find it helpful.

 

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  1. Parents are usually the best advocates for their kids.

I recently watched a documentary on Netflix called The United States of Autism. A concerned father who has an autistic son set out with a film crew driving all over the country interviewing other families living with the reality of autism.

Some of those parents are fierce, going toe-to-toe with state legislature and even Congress, petitioning for insurance coverage for therapies or investigating the Health Department in vaccine requirements for children. Some believe there is a correlation between the number of vaccinations a child receives at one time and autism. Others debunk this idea and conclude it is mostly genetic. Fascinating stuff. Meanwhile, the autism numbers continue to climb and it seems the parents are the only voices speaking up for these children.

 

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  1. Let’s address how Crazy Busy we are.

In the Western culture especially we are crazy busy. Kevin DeYoung, pastor, speaker and writer, struggles with juggling it all too, which is why he wrote Crazy Busy: A (Mercifully) Short Book About A (Really) Big Problem. We push ourselves beyond our limits and it is killing us.

DeYoung talks about stewarding our time and why saying ‘yes’ to more than we should is really a heart issue. That got my attention, especially when he concludes that a lot of our busyness stems from pride in various forms. It’s a short read and definitely something to think about.

 

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  1. This month marks the 1 year anniversary of Redeemed In Grace.

I cannot believe it has already been a year since I took a deep breath and hit publish on Redeemed In Grace for the very first time. I have loved doing this – the writing, connecting, learning, and even iPhone photography (no one was more surprised than me).

I am thankful to you, who have taken your valuable time to read what I write. Thank you!!

The Lord continues to teach me more about Him and myself. I realize I’ve only scratched the surface in understanding how great God is. He leaves me hungry for more of Him, so this blog is part of that journey – learning in knowledge, growing in grace; redeemed by Him and for Him.

However your summer looks I hope you find time to slow down a bit and:

eat watermelon,

(and ice cream),

walk barefoot,

go to the library,

grill out,

and watch the Summer Olympics of course!

Have a happy June 🙂

 

Grace upon grace,

April

 

6 Things Every Special Needs Parent Wishes You Knew

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“but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.” -Romans 5:3-5

 

I hesitate to even write something like this because I can see how it would easily be interpreted as complaining. However, I think that sometimes when one can serve as the voice for many to be heard, it is beneficial for all. I have met other parents with special needs children and while our stories don’t look exactly alike, this list I think addresses issues most parents feel. Even parents with typically developing kids will identify on some points.

Children are a blessing from the Lord, and as we learn what struggles each of us face, “to walk in one’s shoes” so to speak, maybe there can be room in our hearts for patience, compassion, encouragement, and even prayer toward one another.

 

  1. We often feel overwhelmed mentally.

Feeling physically exhausted goes with the territory of any parent with small children. And you do sometimes feel like you will lose your ever lovin’ mind. But raising a special needs child is especially mentally taxing. There is a steep learning curve for parents to learn medical language for example. There are encounters with neonatologists, neurologists, audiologists, optometrists, GI specialists, geneticists, podiatrists, sleep specialists, along with his general pediatrician.

Then we learn the ropes (and jargon) for therapy with Early Intervention, the “experts” in Autism (or whatever the disability), speech, occupational, physical, and playgroups. We find out what our insurance will and will not cover, and then play phone tag with the insurance companies.

Parents with special needs children are later immersed into the world of education (and there’s a whole set of special terms to learn here as well). Obviously we want the best for our child, and I am personally grateful for the educational opportunities we have been given. But this also involves 2-3 hour long IEP (Individualized Education Plan) meetings with your child’s “team” to write out goals and services for him that are legally binding.

Sometimes when we don’t agree with the educational team about his placement or switching schools (again) there is push back. We are their advocates and sometimes that requires fighting “the system” to do what we feel is best for our child.

Most children with Autism have sleeping problems (as high as 80%). This affects not just the child, but also everyone else in the house. Parents are sleep deprived long past the newborn stage and are expected to function as if nothing is wrong.

 

  1. We worry about our child’s lack of development

We wonder if they will ever become independently functional. What will happen if one or both parents die? What will happen to her once she becomes an adult? Will I still be able to care for her?

Worrying about the future is fruitless because no one knows the future except God. But the fears still haunt us and for me it calls for daily trust in the One who designed my child.

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  1. It can feel very isolating

We can’t carry on the same conversations with other parents about our kids. While yours is playing tee-ball and learning about rockets, mine just learned to drink from an open cup without spilling. We celebrate in a big way those little milestones because it’s a small step toward progress for him.

I have to work at not feeling angry or cursed in isolation just because others “don’t get it”. Honestly, it isn’t their job to understand my situation although it would be nice. I have to remember that Jesus sees me and He has carried us through so far. When Christ lived on earth He was misunderstood and even rejected. The Lord sympathizes with my heart.

 

  1. We love our kids!

It pains us to see them struggle or not quite fit in but its just part of the deal. Other special needs parents I know Google like crazy, research like grad students, take their child to a renowned doctor states away, sit in a waiting room while their son has a 6 hour operation, inquire over the best therapy places in town, or special sports teams/activities and attend parent support groups.

These parents are warriors for their kids, utilizing all the resources available to them. All so they can give their kids their best chance to thrive.

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  1. We may not be great at relationships

This goes back to the isolation thing. It is very hard to connect with someone who looks at you as if you’re from a foreign land when you tell them about your day-to-day activities. And sometimes when we sense a lack of grace in how we raise our kids, we draw back. If you thought there wasn’t a manual for parenting a typical child, there definitely isn’t one for raising a special needs kid. It is a vast frontier of uncharted territory for us and we are doing the best we can just like you are.

I also just do not have the mental energy at this time right now. Even scheduling lunch with a friend outside the regular routine makes me want to hyperventilate.

Friends and family who stick by us understand if we don’t call enough or visit enough. There is already a load of guilt for not doing “all the things we should”.

We long for community and a support system, and some of us have it, but some are in a season of life where survival mode is the only option.

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  1. We connect differently with our kids

Like I said before, we love our children, but for me personally, communication is an obstacle. I understand (and interpret) what he says some of the time. My little guy is persistent though and will repeat the same word a few times hoping I’ll make sense of it. Sometimes I do, sometimes I don’t, and we just move on both a little disheartened.

We tell our children we love them over and over, even if we never hear it back. We play their games, the habitual ones (spinning, anyone?), because we long to meet them where they are, so we step into their world.

It’s mind numbing for sure, but for that time he looks in my eyes, holds my hand, falls asleep on my chest, or squeals with delight? Well, that makes all of this totally worth it.

To the parent of a special needs child, you are doing a great job just for getting out of bed each day ready to take on the daily challenges and demands. Don’t give up on your baby.

To others who know of someone with a child who has special needs, show them grace. Understand that their lives function differently than the rest. Give them a hug or shoot them an email of prayer/encouragement. Parents need it!

Hopefully we can all take a step closer toward loving others right where they are, however messy or hard. It is in those moments the light of Jesus Christ is reflected back to the ones you reach out and serve. And isn’t that what we all want in the end? For the world to see Jesus in us, because He is the very best thing for every parent and every child and every person.

 

Grace upon grace,

April

 

 

 

 

All About April

Happy April!

I realize the obnoxious use of self in the title however the post really is all about the month. It just also happens to be my name. Never pass up a good pun, friends.

This month’s finds are for the cook who would just like to press the ‘easy’ button every now and then, family celebrations, the lost art of penmanship and the best DIY show ever. Enjoy!

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  1. The Frugal Girls

It’s 3pm and you have no clue what you’re going to feed your tribe for dinner. Why do they need to eat every. single. day?…(half kidding). So your culinary skills are spent and you need an easy fix. Go to The Frugal Girls immediately and never worry about dinner problems ever again. (And all the moms rejoice!). The Frugal Girls offer tons of easy, affordable, crockpot recipes. Trust me, you’ll be a rock star and your family will thank you for feeding them tonight.

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  1. God Centered Mom Podcast

I’ve mentioned before how I love the Mom Struggling Well podcast. Well, Emily Thomas recently recommended another one on her show called the God Centered Mom. It has blessed me you guys. I think any mom, regardless of what season she is in can benefit from podcasts like these. I hope you give them both a try and that you are encouraged as well.

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  1. The Master Penman

Apparently the art of penmanship is a fading art due to the modern world of technology. Kids don’t learn to craft their writing when laptops are available in every classroom from a wee age. Jake Weidmann is one of twelve Master Penmen in the world and he is also the youngest by three decades.

Maybe it’s the writer in me that is so fascinated by this. I still write out my posts first with pen and paper. Take a look at this very skilled artist and how he wields a pen.

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  1. Autism Breakthrough by Raun Kaufman

I’m open on my blog about having a son on the autism spectrum. Since April is Autism Awareness month I thought I’d share a book I’ve just read. This book is an insightful read into the mind of an autistic child.

It’s a gem for parents or any friend or family member who has a loved one on the spectrum. Raun Kaufman established the Autism Treatment Center of America under The Son-Rise Program. He is witty and a great cheerleader for our kids! Kaufman recalls having autism as a child and how his parents helped him overcome his challenges – as in cured.

I promise this book isn’t hokey. He offers techniques and activities to help, but most importantly your attitude as the parent. Kaufman encourages parents to “[see] your child’s abilities rather than focusing on supposed deficiencies” (p. 268).

If you know someone who could use encouragement with an autistic child, maybe wrap this one up as a special gift just for them.

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  1. Surprises and celebrations

April is a big month of partying in my family. My grandfather, aunt, and dad all have birthdays this month crammed into one week. Squeeze into that Jason’s and my anniversary. Jesse’s birthday is about a week later.

What made this one special is my dad turning 60 and throwing him a surprise party at his favorite restaurant (Cracker Barrel anyone?). Mom managed to keep it a secret and got him there none the wiser. Family and friends came to help celebrate and the look on dad’s face was priceless when he walked in.

Another milestone was Jesse turning a whole hand. So we decided to go big this year. We haven’t done huge birthday parties in the past, because it’s been a mercurial thing for our little guy. He has had trouble in the past with hearing the ‘Happy Birthday’ song and any kind of cheering or candles. This year? This year a blessing happened. The party went off without a hitch and we. sang. to. him. We sang our sweet boy ‘Happy Birthday’ as he stood on a chair to see everyone, wearing his birthday crown (another miracle).

Celebrating life moments are important. It doesn’t always have to be flashy and spectacular. Sometimes it can be. What matters are the people we honor and how we make them feel on their special moments. Loving others well looks like keeping a surprise secret, showing up, birthday cake, balloons, hugs, the gift of laughter, and food of course.

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  1. Fixer Upper

I recently started watching this show and concluded one thing. I am definitely not a DIY girl, but sure enjoy sitting on my couch watching others transform something blah into spectacular. Chip and Joanna Gaines are so adorable with each other too. This show on HGTV (or Netflix, yay!) is worth watching just to hear Chip’s quirky quips and antics (one time he ate a cockroach) or see Joanna’s flawless taste in interior design.

 

What are things you’re into this month? Did you have things to celebrate or occasions to remember? Hopefully it was a good month for you as well. Looking forward to walking through May with you. What is the saying, “spring comes in like a lion and out like a lamb”? I think we’re at the lamb part you guys. Press on into May!

 

The Importance of Being Still

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Last month Jesse had a seizure. I still remember the phone call from his school nurse. There was slight alarm in her voice, but mostly matter-of-fact. Jesse doesn’t have a history of seizures so this caught everyone off guard. For some reason the moment I heard the word “seizure” I went on autopilot. Rushing out of the house I basically flew to his school. The ambulance blazed sirens loud, passing me at the stop light. I knew those ear cringing alarms were for my son, and my stomach twisted. Pulling in right behind the ambulance at school, I found Jesse quietly sitting up in the clinic. Everything was swirly but not once did I freak out or break down.

That was on a Thursday. I answered the questions from the nurse, school staff, paramedics, husband, doctors, and grandparents. My mind and heart stayed occupied on Jesse the entire weekend, sticking to him like glue. On Sunday we went to church and I still had not emotionally responded to his seizure. Jesse went into his classroom while Jason and I sat in the service. For the first time since receiving that phone call my heart was quiet. In the hush of not asking or answering questions, hearing only the sound of the organ pumping through the sanctuary my eyes filled up. I had not been apart from him since it happened, somehow thinking my presence could prevent another one from occurring. My insides started to crumble realizing the seriousness of it all and how grateful I was he was okay.

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Whenever I keep busy or at least mindlessly pre-occupied, the heart issues well up during the week and go unchecked. When there is no room for quiet there is no chance to hear God’s whisper. It is when God gets me alone the dust settles a bit and my spirit is most vulnerable. He sustains us in the storms and waits for us in the quiet. Psalm 46 came to mind days later noting the significance of being still before the Lord.

“Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth. The Lord Almighty is with us; the God of Jacob is our fortress.” (Ps. 46:10-11 NIV; emphasis mine)

Even when our world comes crashing down the Father assures us that He is “our refuge and strength, an ever-present help in trouble” (Ps. 46:1). Monday through Saturday I blanket my heart to keep from listening to the God of the Universe. Sometimes its unintentional, sometimes it isn’t. When we feel restless it is because we are not properly resting in Jesus. He has Power and I disregard it as not enough. Grasping the wind to satisfy my soul doesn’t work.

Even as I sit before Him, my mind races with all the things to do today. The Enemy loves to work overtime when we become intentional in pursuing Christ. Don’t let that deter you. When we persevere in our time alone with Jesus and hush our souls, He starts to show up. God has so much to offer and teach us, all we need is to be still and a willingness to listen. You might be surprised what the Lord reveals to you – sin, hurt, suppressed emotions; I always am. Since God made us He knows how we operate better than our selves. The Father of Heaven knows you perfectly, inside and out.

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If we aren’t learning to quiet our hearts as we enter His Majestic Presence we will burn out. Joy is found in worshipping God, which comes from our spirits keeping in step with His. There is one rhythm, the same will, a shared love in connection to fellowship with the Lord.

Jesse’s medical emergency was a wake up call for our family. It also showed me how often I live my life in fight or flight mode, keeping my mind and heart cluttered. Today is not Sunday, so I don’t have the privilege to sit in the sanctuary. But on every other day in the week I can start to carve quiet moments alone with Him. The couch, the kitchen sink, the car are all places that can be turned into a place of worship. Everywhere we go we can be living sanctuaries, knowing the importance of being still.

 

Grace upon grace,

April

Childlike prayer

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We pull into the turning lane to enter our neighborhood and I start to tense because he does. Jesse, my four-year-old son with autism, hates stopping in traffic. The onset of cars rushing toward him on one side and whizzing by on the other is sensory overload for his system. I can’t say I blame him. Jesse starts to scream, and kicks the center console from his car seat. He cries, “Pray!” And then there is a whimpering, almost begging in his voice, “pray?” My heart splits right in two.

So with my eyes still on the road I lift up my son’s fears to the Lord, asking Him to bring calm and peace to Jesse’s heart. He quiets and settles down a little, and the two of us turn into our familiar street leaving the chaos of the road for another day.

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I’m often convicted of my anemic prayer life after hearing my son ask for prayer. He prays about everything. I taught him the singing one, “God our Father, God our Father, we give thanks, we give thanks, for our many blessings, for our many blessings, Amen. Amen.” So now whenever he is fearful, in trouble, about to eat, or thankful Jesse puts his little hands together in prayer.

I want to be more intentional, and frequent like that. When we cry out to God offering our pleas or praises, the heart calms. The reason we are admonished to “pray without ceasing” is that our spirits need reminding of Who is in control. I am helpless and needy. It is when I pray that I feel even closer to the Lord. He designed it that way.

Communion in prayer and fellowship with the Father depend on how often I’m speaking to Him in prayer as His Spirit speaks to me through His Word. It doesn’t have to sound super spiritual or stifled with formality. We have the freedom to speak from the heart and plainly present our requests, like a child. God knows what we pray before we even say it, but He also knows that prayer forms belief. It is for our benefit.

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Prayer allows us to see God at work on a personal level. Intimacy blossoms with the Lord as we get a front seat view to His power and faithfulness in answering our petitions. We experience God in those moments. Also, when we don’t get the answers we want, it doesn’t mean the Father is absent or a hard God. It simply means He has a better plan in mind, meant for your good and His glory.

No matter your situation, big or small, nothing is too insignificant or too hard for our Great God. I’m learning to pray and praise God for the everyday things, not just go to Him with emergency crisis prayers.

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Jesse asks to pray again when we get home. This time it’s because he’s thankful. I can learn from him about how to pray. To be dependent on God through the power of prayer is an opportunity to grow deeper in love and trust with the One who knows us best. It is only then that I understand what it means to have the faith of a child.

Grace upon grace,

April