Conversation Starters

A boy in Jesse’s class invited him to a birthday party recently. I bought a gift and marked the time/date on my phone calendar. The day of the party we arrived to find a few of his classmates in attendance, which I silently felt relieved that we would know at least a couple of the other party guests. Jesse immediately ran to a girl in his class, who is Hispanic. Like him, she is also autistic with low verbal skills. I had never met her parents before since she rides the bus. Other parents who pick up their children after school usually congregate outside the building under an awning. After almost a year, I became acquainted with a few of them.

I walked up to introduce myself to the girl’s parents and was surprised that they knew very little English. In fact, the mother could say maybe five words in English, leaving her husband to do most of the interpreting which was shaky at best. All I could think about was how this couple must have a hundred questions related to their daughter’s school. I could not imagine how lonely it must feel to live in a foreign country, not knowing the language, while navigating/advocating their child’s special needs education!

We attempted a couple of times to talk but the few Spanish classes I had in high school and college completely evaporated from my brain. Knowing how to count to 20 in Spanish or recite the months of the year was not very helpful in the moment. I wanted to communicate with the mother and by the expression on her face I think she did too. She showed me a picture of their other child and I smiled back. We were reduced to facial expressions and pictures. My heart hurt for her and their family.

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Then it occurred to me that Jesse might feel isolated in a similar way. I have wanted so desperately to communicate with him that it is easy to forget how he must feel too. A book I just read from an autistic boy’s perspective called The Reason I Jump by Naoki Higashida gave me a little more insight and sympathy on this. At thirteen, Naoki transcribed in Q&A form using an alphabet grid with the help of his mother and teacher. The book was later translated into English and has become a national bestseller. I definitely don’t agree with his New Age beliefs sprinkled throughout the pages but the core idea I took away from reading it was that we sometimes limit those who aren’t just like us. Whether it is a language barrier, intellectual, or physical, we often view them as less than the rest of us. Instead of learning what life is like in someone else’s shoes we are quick to treat the disabled or disadvantaged with less respect than someone we can relate to.

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I still do this on occasion to Jesse when I struggle to communicate with him or when he can’t calm down or because bath/bedtime makes him super hyper and giggly. The underlying fact is, when I don’t understand his speech or behavior I’m tempted to give up because we aren’t speaking the same language. It can be exhausting and frustrating. Yet I wonder how many times people with Autism or any other barrier are quickly dismissed because the ability to communicate easily is absent. We assume that there isn’t another way or that the case is hopeless. Reading this book gave me a different perspective, and for the first time, hope. Just because Jesse can’t speak in complete sentences like other children his age doesn’t mean he lacks intelligence or is less of a person. Naoki says,

 

“One of the biggest misunderstandings you have about us is your belief that our feelings aren’t us subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren’t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or meltdown.” (p. 109)

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I imagine it might be like someone in a coma who can’t respond verbally or physically but can hear everything going on around him perfectly. His senses are a little thrown off, but mentally the coma patient can comprehend his auditory surroundings. Often doctors, relatives, and visitors talk over the patient as if he isn’t even there.

I’m learning to slow down and intentionally communicate with Jesse – mostly to understand him but also to treat him like I would anyone else without a disability. He’s only six so there will still be wisdom needed (and grace) for training and discipline because I often don’t know exactly what his level of comprehension is. But I don’t want to limit his abilities either. Sometimes that means pushing him a little, to gain confidence. Other moments are more grace-filled and tender, realizing he doesn’t have that specific skill-set yet. But it’s a start in the right direction. Conversation can happen in many forms, not just verbally. For us it looks like a smattering of sign language, spelling words out, hand gestures, pictures and one to two word phrases. We get by. And I am learning that I can’t put him in a box, because he always surprises me by refusing to stay in the mold that society has placed on him.

 

 

Grace upon grace,

April

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

 

 

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

 

 

 

 

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

Jesse’s Autism

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I guess I already knew. Jason and I had been using this term to describe Jesse 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. Jesse’s autism was now “official” for all educational purposes.

The diagnosis we were given when Jesse was a baby was “developmental delay” and “hypotonia” (which just means he has low muscle tone). I already accepted this. Jesse 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 “Jesse’s 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 Jesse’s 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 Jesse’s 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. Jesse 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”. Jesse is just Jesse.

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

Trust the Process

IMG_3446When I am making bread from scratch and pouring all the ingredients in a big glass bowl it doesn’t look like much. Flour, oil, sugar, salt, starter, and water look more like sandbox soup. It isn’t until I start mixing and kneading that the ingredients slowly combine and the bread begins to take shape as the dough I intend it to be. Still, whenever I’m in the middle of hard stirring I say to myself, “trust the process”. There are necessary instructions to follow in order for bread to be made into something delicious. I always know what the end result will be, but the first six steps I doubt just a little. It bears no resemblance to the warm melt-in-your-mouth carbohydrates I want to devour!

IMG_3448            Sometimes in the small day-to-day tasks it is hard to see the final outcome for whatever I’m trying to achieve. Whether I am attempting to train Jesse toward an obedient heart or help him in his developmental delays, I focus on one day at a time. I can’t even think about how impossible the tasks seem if I try to envision what or who he will be at age 20. The “what-if’s” start to crawl around in my brain and I just might hyperventilate.

What if he never gets potty training?

What if he never rides a bike?

What if he never has the mental understanding of his peers?

What if something happens to Jason or me?

Who will take care of him? Will he ever be an independent adult?

What if I fail as a mother?

The “what-ifs” are no help at all. It just creates fear and doubt and shrinks my faith.

A lot of things in my life right now resemble sandbox soup. I’m just not quite sure how it will all turn out yet. But here’s the thing: God does not ask me to have everything tied up neatly in a pretty bow. Or quite frankly, He does not feed my arrogance and insecurity to know the future. My finite little mind is not meant to handle such things. My Father just asks that I trust Him, trust the process of daily perseverance. Prepare. Practice. Pray. Patience. Persevere.

IMG_3447    Not only does each day have enough worries of its own, there is also enough grace for every day. On Sunday, Monday, Tuesday and every day through the week God makes His mercies new, His grace is fresh and able to sustain me as I navigate through the trenches of teaching a child with special needs. His supply is infinite because He is and because “He tends His flock like a shepherd: He gathers the lambs in His arms and carries them close to His heart; He gently leads those that have young” (Isaiah 40:11 NIV). Trust the process. Take it one step at a time.

I also take comfort that as He makes each day new, so He also renews my heart of faith. Every morning when I wake up I can choose to follow Him and trust in His plan for that day. Sometimes when I decide to go ahead of the Lord relying in my own strength the spiritual lessons learned are hard and humbling, peeling back the layers of sin in my heart. As I learn to walk in step with Him, I know there will be days I stumble, flounder, and flat out fail. But then my heart always circles back to the cross and I cast my anchor upward. Forgiveness and redemption are found there.

Friend, when the days are long, filled with your stubborn three year old who refuses to eat the lunch you prepared, or the youngest one just marked up the walls with colorful permanent markers, or your other child needs constant attention right now, remember that God makes all things new: days, seasons, years, and even people. It can be tiring when I’m in the thick of it and I see little to no progress with my son, but I trust Jesus Christ to carry me through another day. I can come before Him and say:

“You make all things new. You continue to renew my heart each day to transform me into the likeness of Jesus.

You make all things new. Your mercies never end and my heart is light as I receive Your flood of grace for this day.

You make all things new. You turned my lifeless heart into one that beats with the rhythm of Your Own.

You make all things new. You say that my wailing will turn into dancing, my sorrow into joy. Beauty will rise from the ashes.

You make all things new. Your promise of a new heaven and a new earth is true. I will wait in expectation as You make all things new.”

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And the promised return for our perseverance in trusting Him with our tasks? The end result is bountiful fruit; fruit of the heart that the Lord will use to glorify Himself as we begin to reflect His Son more and more. Excuse me, I hear the oven timer going off. My bread is done.

Grace upon grace,

April