Disappointment and Hope

An older woman with children grown sat in my living room listening to me pour my heart out. I listed specifics of disappointment I struggle with but it probably sounded more like a child whining. We didn’t know each other, not well anyway, having just met face-to-face for the first time that day. But she was recommended by a trusted mentor as someone who could listen and give counsel. I didn’t hold back, and after quietly listening letting me vent all my frustrations, she wisely directed me to the book of Job.

Here was a man who lost everything. His servants, wealth, all of his children, livestock, and income were gone. Then he was stricken with boils all over his body as the last blow. His wife and friends didn’t provide much help either, urging him to curse God and die, or confess some hidden sin he must have for God to permit all of this.

Job had no answers and he found no comfort.

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The last few chapters in Job are some of the most powerful words recorded in the Bible. The Lord decides to speak directly to Job, asking rhetorical questions reminding him (and us) Who is in control of the universe.

God basically tells Job that since He is all-wise and all-powerful, who is he to question the Lord?

My thoughts are so limited, my understanding as vast as the present day. I don’t know what will even happen beyond the end of this sentence. Not really. We learn from past history but God was actually there. Not only that, but He has laid out the future as well. He is there too.

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So this godly lady sitting on my couch pointed me to Job’s story to help me remember God’s Sovereignty and Greatness. Just like Job, our lives are one of many stories weaved into History. It’s not that our lives are meaningless, but in comparison to the Lord’s omnipotence who am I to stamp my foot and say “life isn’t fair”? If I know He loves me fiercely enough to send Jesus to die for my sins then can’t I rest in His wisdom for the rest of my life too?

The continued disappointment of infertility sometimes stings. I think I have a handle on it then there’s another pregnancy announcement or baby shower invitation. It’s like throwing cold water over my head. I’m stunned by the swell of emotions that come from a deep place inside me of something lost- something that never was.

Resentment isn’t far behind if I don’t quickly put a lid on the explosion of feelings. So I asked this woman what do I do when this happens? When I’m side-swiped by my own heart?

She encouraged me to go to the greatness of God when I feel jealous, hurt, left out, over a heart desire unfulfilled. That’s why we looked at Job. It is one of the best places to see the Transcendence, Sovereignty, and Wisdom of God. Only God is big enough to fill the gaping hole in our hearts.

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If I am not given more babies then He will give me more of Himself by helping me understand that only Jesus satisfies the longings of my soul. I may not understand why I have infertility or why God chose me and Jason to have a special needs son. These are worlds I never expected to enter, but here we are.

When we ache over unfulfilled dreams, we can always look to Christ. God proves Himself over and over to us even though He doesn’t have to. As we remember His past faithfulness, His present goodness, and future graces, well, these are gifts to cling tightly to. His love for us is still true, meeting us in the pain. Our Father gives us our Hope in the middle of Disappointment.

There is a song by Lauren Daigle that speaks directly to trusting God when life doesn’t turn out like you expect. I hope you are ministered to today in whatever loss or dream you’re still waiting on.

 

Grace upon grace,

April

 

 

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The joys and challenges in parenting a special needs child

January has been unexpectedly hard- and cold, but well, that one is to be expected.

We’re still settling into the “new house” as Jesse calls it. This doesn’t seem like home yet,  so we’re all a little displaced, since we don’t belong at our old house either. But I figure this will soon wear off and be a safe haven rather than feel like a guest in our own home.

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Along with that there have been particularly stressful moments recently trying to mother/referee Jesse’s rollercoaster emotions. Sobbing one minute and laughing the next, mixed in with a good dose of hyperactivity and whining tantrums.

It’s taken me off guard because it isn’t his typical behavior.

Is he tired? Should I change his diet? Special vitamins? Is this a normal part of growing up?

I can guess all day and go mad trying to figure out the solution- or better yet, the problem. He isn’t able to articulate all of his big feelings, so outwardly I try to calm him down. But inwardly I internalize.

Worry.

Stress.

Until the other day when Jason and I were attending to “new house” stuff I had chest pains. Normally I would shake it off (perhaps foolishly) but since I’ve had a run in with AFib there was concern. Each breath hurt my chest.

I’m fine now, but this pain lasted a day and a half-  soreness like maybe I pulled a muscle. Ironically Jason has had the exact same chest pain for 2 years. I did rest that day, just in case, but my fears of another heart problem were put at ease realizing he experiences the same thing.

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In fact, it makes sense now.

I’ve heard it said before that parenting a special needs child is on the same stress level as a combat solider. Well, I don’t know about that, but it serves up a great deal of learning challenges, misunderstandings, isolation, acceptance, self-help skills, and sleep deprivation.

This isn’t a sob story because goodness knows we have been tremendously blessed. I know that.

God has given us our son with a purpose. Some of the reasons I see so clearly and other times I do question why there are disabilities at all. It doesn’t seem fair. Looking at other cases just breaks my heart.

But here are two things I know:

One, I don’t want to ever pity another family with special needs children, but love them by being their friend. Enter their mess. Show compassion. Listen. I can’t understand the exact situation, but I can pray for them and even with them. This is what these families need.

To be heard. Seen. Validated. Loved.

Two, God gave me an amazing son who blesses others in a way I can’t fully understand. Sure he’s not perfect by any means but he loves cheerfully. My prayer has always been that the Lord will allow others to see His kindness and goodness through Jesse.

I believe God has honored this. 

My Father teaches me more and more and more patience when it comes to working with him. Jesse is the only extrovert in the family so he keeps me and Jason constantly climbing out of our comfort zones. God is inwardly refining my character, as well as showing me how to practice seeing others like Jesse does.

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This job is for life and I know there will be more joys and challenges with it. The joy is found by recognizing those moments as gifts and giving thanks. The challenges prompt me to pray more specifically and consistently.

Is it stressful? For sure. Is Jesse worth it? Always.

Knowing that God sees all even when no one else does helps me persevere. Jesus shepherds those that have young (Isaiah 40:11) and He will never leave me or forsake me (Hebrews 13:5).

I can rest in this, then take a deep breath.

 

Grace upon grace,

April

 

***I wanted to let you know that I have created an Instagram account just for this blog! You can find it here: @redeemedingraceblog . You can follow along to receive weekly encouragement, as well as the posts you already get in your inbox from Redeemed In Grace.

If you haven’t signed up for new posts to be emailed directly to you I think you should 😉 That way you can open it at your leisure, on the couch with a cup of coffee. That’s what I imagine anyway.

Thank you for being a faithful reader. You have no idea how much that means to me that you read these words the Lord has placed on my heart. My hope is that you are encouraged here. Happy reading and see you on IG!

 

The Life I Didn’t Expect

I found Meredith through Instagram, drawn to her heart in encouraging parents with special needs children. As a parent herself with a child on the Autism Spectrum, she offers her personal experience, compassion, and desire to champion for those who need an advocate. Welcoming another mama’s heart to Redeemed In Grace today.

Guest Post by: Meredith Dangel

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I never wanted to write about autism.

My little family blog, which I started when seemingly anyone with an internet connection had a blog, was meant to document our days and stay connected to our far-flung family and friends.

I never wanted to be an advocate.

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You know the one, right? The attitude-bearing, button-wearing, walking bumper sticker that people avoid. I felt allergic to that. Honestly, I’m still allergic to that.

Yet, I am, without question, an advocate. I’d like to take you to the beginning, to share with you how God prepared me for this role, this passion, and this new career. The beginning, though, is my childhood and we don’t have time for that. I’ll take you instead to a feeling that was born inside me on the day a neighbor asked me a question about then 2.5-year-old Henry.

We didn’t know her well, but she was kind, bringing us a homemade cake just before Christmas and waving from her front porch whenever we pulled into the driveway. Standing in the front yard one afternoon, I shared how we were in the process of evaluating Henry for autism, but I was pretty sure the evaluation would be conclusive that he was, in fact, autistic. As she asked me questions about what autism means, I described it as best I could with just a few months of acquired knowledge. I’ll never forget what she asked then, not unkindly but uncomfortably: “So, they can learn the proper response to others’ emotions, but they don’t actually … feel it?” She gestured toward her heart as she said this.

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I don’t know my exact response, but I remember fumbling. I tried to explain that, yes, they do feel, but my vocabulary was not yet nuanced enough to delve into the complexity of autism and the lack of empathy myth. On that day my effort to understand Henry, to support him with every resource Keith and I had to offer, blossomed into something more. I now wanted to help others understand too. I never again wanted to be stuck without words, to feel as if I had betrayed my son and those like him.

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The path I’ve taken isn’t for everyone and I would never assume it should be. God has nudged me into sharing my own story, educating others about autism, and even changing my career. To ignore Him and to hold tightly to the gifts I’ve been given would be a great shame. I often say if I don’t share my knowledge, I don’t deserve to have it.

Day by day, year by year, God has formed me into a person I didn’t know I could be. In parenting, I do seek advice and never stop learning, but I also trust my instincts. I am confident that I know my son and that a good and loving Father provides each day all that Keith and I need to parent him.

In both my private and public life, I take more risks (calculated and prayerful, of course) and worry less. Maybe that’s the exact opposite of what you’d expect from a mom of a child with a disability, but this part of my identity has made me braver than I ever imagined. For Henry and, most importantly, for God, I would do anything.

I would even wear a fundraising t-shirt. Maybe even a button.

 

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Meredith Dangel is a writer and speaker and soon-to-be mental health therapist who longs to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult – it can be beautiful.

http://www.meredithmdangel.com/

https://www.instagram.com/MeredithMDangel/

https://www.instagram.com/mamaneedsamoment/

 

A Window View

I’ve asked another mom to write a guest post on what it’s like to parent a child with special needs. My friend Alicia has a son in the same school as Jesse, and we met at the beginning of the year. She has shown me the ropes, as it were, for support groups, community meetings on special needs, events, and overall made me feel welcome in a new school environment.

We’re both parents of children with special needs but it looks different for each of us because no two diagnosis are the same. My hope is to facilitate more stories like hers from other parents since this is a community that largely goes unnoticed. Maybe because someone doesn’t know what to say or how to help, or afraid they’ll say the wrong thing. Reading part of someone else’s story can help us relate to one another a little better. Maybe you or someone you know cares for a special needs child or adult. It’s helpful to know you aren’t alone and that others share similar stories.

It can be a sensitive topic- but more than that I think the special needs community appreciates compassion. Compassion to not feel like we or our children are less than, compassion to see us when it’s easier to avoid the uncomfortable. Here is a window view of what Alicia’s daily life is like with her son William.

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Guest post by Alicia Lynch

My name is Alicia and I’m a mom to three wonderful kids.  My oldest William has Autism, Attention Deficit Hyperactivity Disorder (ADHD) and Intellectual Disability.  He is 10.  This is one of my stories about him.  I have two other children Wyatt who is 7, and Annaliese who is 3.

Grooming is difficult for lots of children with Autism and other sensory disorders.  But let me tell you, it’s a crazy task in our house.  Back when William was a baby he hated his nails trimmed.  Once I accidentally cut the tip of his finger and it bled.  My mom guilt sat in!  Is this why he hates his nails trimmed or is it his Autism? Or something else? Then you discover a ripped toenail and wonder when did that happen?  Is that why he was upset?

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When William was about 5, we would have to put on his favorite television show, while my husband held him and I trimmed his nails, or vice versa.  We had to be quick.  He hated it!  But here we are today, at 10.  And he is finally tolerating having his nails trimmed.  Does he like it? No. Tolerate it? Yes.  And that’s a WIN!

I write this to give others hope. Your child with sensory issues might deal with a simple grooming task at 10, 12, or hey, your child might handle it at 5.  But there’s light at the end of this tunnel for us.  When he was 3, I never imagined that we would be where we are now.  Mamas, take a deep breath and keep on going.  Because I swear to you, that was just yesterday.  Now, haircuts, that’s a completely different story!

To those reading this who do not have children with special needs, I ask that you be kind and patient with us parents of special needs children.  It’s simple things like trimming a child’s nails that will put you over the edge some days.  It’s these little things that are not difficult but they add up.  And special needs parenting is stressful enough.

 

Upside Down Blessings

Every Wednesday afternoon I sit in a waiting room for close to an hour while Jesse has occupational therapy. There’s a bulletin board in the front office with their business public Wi-fi password, upcoming events, and articles related to children with special needs. One article in particular caught my eye since it was an interview from two parents with a special needs child. In it, they shared, “We grieve the dreams lost, but not our child”. I remember wanting to shout “Yes!” after reading that small but powerful sentence. Their words echoed something I had hidden in my heart for years but couldn’t even articulate without it coming off like self-pity.

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The truth is, no one wishes for a baby with special needs. We aren’t wired to think that way. So when the diagnosis does come, whether in utero or well into toddler years, there IS a grieving process over future hopes that will never materialize.

But we’ve joined a club we didn’t sign up for and we’re here- so now what? Does it change the way I love my son? Of course not. It just means there will be a plan B that isn’t laid out yet, in which there is little control or foreknowledge. I know that sounds very much like parenting a typical child, but I’m convinced there is more of a blueprint for raising children without a disability than with one. It’s not to say that parenting in general isn’t soul-draining- it is.

Yet the future for most children is that they will one day tie their own shoes, converse in complete sentences so that others understand them, and become independent fully functioning adults in society. There is a broad but knowable path laid out here. Yet the spectrum for autism, OCD, ADHD, or physical handicap is even bigger. So no two special needs persons are alike in their diagnosis which makes parenting feel more like a desert wilderness. It’s harder to swap “what did you do when she was 3 and this happened…” stories to learn from.

I’d like to say that 7 years into this I never get sad. But just as the parents in the article said, you do grieve over broken dreams… and the daily struggles too. And yet, Jesse is a gift I can’t imagine living without. He teaches me how to see people, to not be so self-conscious and to love unconditionally.

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My son is what I like to call, an upside-down blessing. God often teaches us through suffering and disappointment. This is part of the upside-down kingdom effect. I lean more into Him, cry out when I don’t understand, in the times I’m flailing because my faith is shaken.

It stretches my trust in God, the Sovereign Creator. I’ve even lately begun to see secondary infertility in a new light, because maybe my ministry is to take care of the one. Even as he gets older his dependence on me hasn’t changed- so maybe, just maybe he needs all of me right now and God knows that.

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In the end, this piece of life and how we respond can be for God’s glory and our good. The growing pains are real, and will probably never go away this side of heaven. For me and my husband our Christian faith keeps us going. We believe that one day our son’s mind and body won’t be disabled anymore. One day he will be fully restored as will we. For the Christ-follower, there is always hope. Because hope becomes sight when we see Jesus face to face; and all the dreams I thought I wanted will pale in comparison to the very thing my heart always hungered for.

 

Grace upon grace,

April

 

 

Life-giving community

Hi patient readers!

This summer I took some time off to focus on Jesse while he was out of school. Honestly I didn’t write much because the past few months were mentally and physically taxing. It was hard but rewarding because my goal was to invest in my son’s heart while we had uninterrupted days. Motherhood ain’t easy and part of that is because of how much it requires to give of ourselves- daily- hourly- sometimes minute to minute.

But the sweetness comes when praise songs we’ve been listening to over and over start to bubble up out of his little voice. It’s when the things I have been teaching him for so long and start to feel pointless finally click. I saw his character form more over the summer and mine too. His speech has blossomed and he’s testing the waters of independence more. We still have a long way to go, but that’s okay.

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As a mom to a child with autism I’m learning that I don’t need to assume his limits. Meaning, it just might take more time, but he’ll achieve milestones eventually. Like learning to ride a bike has been a challenge. Jason and I got him a bike (with training wheels) for Christmas. For the longest time he only wanted to sit on it. And he was even timid about that initially. Then over the summer he began to pull his bike out out more. He would sit on the bike and let me gently push him from behind as he learned to steer.

Lately he has shown interest in working the petals but we aren’t there yet. And that’s just fine because I believe in him to get there one day. His confidence in his own abilities has to click first.

Pouring into Jesse’s heart as well as working on developmental skills has been the main agenda since the beginning of summer. I think it’s like this for all mothers really; there isn’t a set time to start and stop such a huge task. There are seasons I’m focused more on these things and there are times when others (church leaders, teachers, therapists, family, friends) help take the driver’s seat. It really does take a village to raise children, special needs or not. I always seem to be re-learning this because my job feels isolating, and can be if I let it. But God didn’t create us to live independently from each other. We need helpers in the community and the body of Christ to come along side of us.

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Jesse is seven. It seems to be going by so fast on one hand, while daily living can feel monotonous. And yet I know these are the formative years I don’t want to waste. Staying faithful is the key. I’m grateful for our invaluable time together over the summer, but the school year will be good too. There is more time for “his village” to teach him, allowing me to still be a person and re-charge, hopefully to be an even better (nicer?) mom. May we learn that it is not good to parent alone, and receive help from others. Let us bless those around us, remembering that leaning on one another isn’t weakness but life-giving.

 

Grace upon grace,

April

If you are looking for an online community to help you navigate parenting a special needs child this is an encouraging space to go to: Anchored Souls: Real Hope for Real Life

 

What I Learned: Fall Edition

When I remember, I try to participate in a community post organized by Emily Freeman, titled What We Learned. It’s a good way to press pause on this season before the next one rolls around. The topics can be about anything really. This autumnal post ranges from a food I rediscovered, encouragement for parents with a special needs child, learning to do hard things, and keeping it simple.

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Head on over to see more seasonal posts from others and what they are learning too. I promise you won’t be disappointed.

Here are 5 things I learned this fall:

 

  1.  I like apples again and apparently so does my child.

I don’t know when I stopped eating apples, but it’s been a few years I’m sure (unless it happened to be covered in caramel- duh). But I saw a Pioneer Woman recipe to make an apple tart so I marched myself to the grocery store and bought a bag of Honey crisp apples. I never got around to actually making the recipe because Jesse and I accidentally devoured most of them.

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I had no idea he liked apples. He didn’t last year, but somewhere in between he took a fancy to them. He prefers them just plain, but I like apples with peanut butter, or fruit dip or salt or even in a turkey sandwich! Still planning to make that recipe, but who knew it would evolve into more than an apple tart?

 

  1.  Listening to another mom talk about her child with autism made me cry.

I listened to a podcast interview from a mom who has a young adult autistic son. It was very helpful to hear her perspective, since I’m more on the front end of the journey. Terri Conlin shares her experience in her son’s diagnosis at an early age, dealing with behavioral issues, learning obstacles, as well as how siblings fit into the mix.

Her feelings match my own. I found myself blinking back tears because even though the autism spectrum is broad, the emotional rollercoaster is very much the same. She helped me remember that I am not alone in this. Raising a special needs child can be a maddening enigma, but it doesn’t have to be lonely.

You can find Terri’s interview on the God Centered Mom Podcast . She also writes lovely words on her blog www.whitepitchers.com. I hope her message encourages you or someone you know with a child on the autism spectrum.

 

  1.  Running is a great stress reliever.

This fall I started running consistently in order to prepare for two 5K races. There is something intoxicatingly free about running outside. As the weather cooled down I tied up my shoelaces to do just that. I’m not very fast, but I can run distance with enough preparation. Just to finish the first race was my goal. The second race happened this past week and I ran a personal best in my running time.

 

After a bizarre collapse and my heart going into atrial fibrillation last fall, I silently thanked God for allowing me the privilege to run again- to have a healthy body. I don’t take it for granted at all. It showed me that with God’s grace, I could discipline myself to do hard things – like running a race, finishing, and running well.

 

 4. I don’t love Daylight Savings Time.

I don’t know what important person came up with the idea to move the clocks in the fall/winter so we have LESS daylight, but I am not a fan. It gets dark by 4pm and I’m ready to crawl into my pajamas by 6pm because it feels so much later than what it actually is. Would it be so bad to do away with DST altogether?

 

5. Keep It Simple Sweetie (K.I.S.S.) is more than just an acronym.

If the holiday season stresses you out this is a saying to practice. As I started to get the Christmas decorations out this year, a familiar cloud of anxiety loomed overhead. Up until now I have put up TWO Christmas trees (because I’m a crazy person) and crammed every single decoration we own in whatever white space was left.

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I’m not a fan of clutter or excess, so this was the exact opposite of what I find relaxing and enjoyable. Then it hit me like a bolt of lightning. I’m a grown up. This is my house. There aren’t Christmas police that say I have to deck the halls to the brim of losing my mind.

So this year I put up ONE tree and half of the decorations. I have to say that I absolutely love it. It won’t be a bear to take down after the New Year and my family’s everyday clutter is still welcome.

 

What are ways you keep this season of Advent? Are there hard things you have to do or want to do but haven’t yet? Maybe you listened to or read something encouraging you can pass along to others. Or perhaps you too tried a new food or rediscovered an old favorite. I hope you enjoyed fall as much as I did. I was a little surprised by how brilliant the colors were in Alabama! That’s always the best I think, to be surprised by beauty and count it as a blessing.

 

 

Grace upon grace,

April