Hope in the Journey

Hope.

Such a simple, small word. Just four letters. Yet filled with so much meaning. So much longing. So much promise.

Today, I am sharing with you my journey to hope. A journey I am on with my husband and Sweet Boy-Child. This is a journey we have been on for a little while, for most of Boy-Child’s life. Though, perhaps this journey is not as long as it feels. It is a journey I have shared bits with you before, throughout my posts, but specifically in The Journey and Rejoice.

Our Special Needs Journey

Photography by: Robbie Bergman

THE BEGINNING 

My boy-child came into this world as the third child in our growing family. He was a busy baby in the womb but proved to be a relaxed and easy going third. He loved cuddling and was happy to be strapped to me in a carrier as we adventured. At an early age, he was an observer. He watched his older siblings (almost 2 and almost 4) and marveled at their crazy antics. He did not copy them, just watched. Always interested. Always curious. But always a bystander. Yet always, always with a smile.

My Sweet Boy-Child

Photography by: Keren Sarai Photography // Crochet Pea Pod Set: CrochetASmile (me!)

Honestly, I do not think a more beautiful boy has ever existed.

My Early-Walker

Boy Child was an early walker. Really, he had learned to become a do-er. His observing taught him how to do things. It did not teach how to communicate those things, however. I assumed he was a quiet child. Or maybe, I hoped he was a quiet, “easy” child. One that takes after my husband more than me. I assumed he enjoyed just watching and was happy to go along with the older siblings.

But I was wrong. And here is where I see grace begin to shine. I begin to see the hope. I can stand here today assured, I did nothing wrong. I did not under-parent him. I did not under-love him. I did not miss something. Instead, I see, now, that he is a little different than his siblings. He understands, interprets, grows a little differently. And really, dear friends, aren’t we all just a little different from each other. It is those differences that are beauty-filled. They are grace-filled. They are joy-filled.

Our Big Family

Photography by: Kay B Creative

Though Boy-Child has some differences, those differences truly have changed each and every one of us. Each in our little (or rather, big) family. He has changed each of us for the better. And in that, there is beauty, grace, joy, and hope. Hope for a brighter future for each of us. Hope to learn to love more fully, more truly. Hope to understand others, different than ourselves.

THE REALITY

Sweet Boy-Child is not easy-going. He is not quiet. A little after 18 months, he started to get frustrated. Quickly and easily. I realized then that there were speech delays, and pretty significant ones at that. Yet, I didn’t understand fully what we were dealing with, where we really were.

My Sweet Boy Child

We sought help through our state’s Early Intervention program. Sadly, the system failed us. They suspected his speech would be coming in any moment, and told us to call again after he turned 2, if it did not. I look back at this time and wish I understood more of what our delays were so I could have fought for him. But I did not. Again, there is grace in this. I was pregnant, expecting our fourth, and honestly, was trying to stay afloat. I was not living in community and so life was hard.

I truly believe God was using this time to make me ready for our journey. It would be hard. I needed to come to my end so I could learn to fully trust in Him. To lean on Him. I look back at this time, and though I am sad, though I wish we had received help earlier, I KNOW that this was a time of learning. Of growing. Of preparing. Of HOPE.

A few months after Boy-Child turned 2, we contacted Early Intervention again. We were placed with an amazing social worker that expedited our testing and services. She immediately saw our need, perhaps even more than I did. I am so thankful for her, to her, still to this day. Boy-Child was tested for speech delays, developmental delays, and sensory processing needs. I was still in much denial that there were delays in anything other than speech.

Despite my denial, Boy-Child needed more therapy. Though I did not understand, though I did not fully see – I did what was best for my little one. Boy-Child received three hours of therapy each week. Three hours of amazing services with amazing therapists. Each that helped him, but even more, helped me. They cared for me and my family. They worked with me. They taught me. They showed us all grace. And they gave us HOPE.

My Littles

This was the hardest year of my life, so far. It was a year of intense emotions. Of in-explainable behavior. A year of watching my child come apart and not knowing what to do or how to help. Of my hands being full and not always seeing the grace in it. It was a year without hope. Until.

We Sold Our Home

Until we dared to hope. To pray. We decided that the life we were living needed to be lived in community. Honestly, I stopped and told my husband that I could not continue. I was done. Hands raised high in surrender. Life was too hard to do alone. So we updated our home and began the search. Through it all, we had to rely on God’s will and His timing. Each and every one of the controls, my contingencies, that I placed on our home search fell apart. They had to be broken. And when we had lost hope, when we came to the end of ourselves, we found our home. The home that was beyond all that we had asked for. The home we are in now.

Hope came alive.

First Day of Preschool

When Boy-Child turned 3, he aged out of the Early Intervention system and we moved. We chose to move into the Early Childhood program with our School District and work under an IEP. Things with Boy-Child continued to grow harder.

Since he was 18 months old he was easily frustrated, easily overwhelmed, easily upset. He screamed a lot (and, no not the typical toddler screaming/fits). It was hard. And it was scary. Our move was particularly hard for him. The break from services for a few months, even harder. We were careening out of control and I was relieved when school began. I knew the routine that school could give would help. The therapies he would receive from school would help. And it did. HOPE bloomed once more.

THE NEXT STEP

When school began, I jumped into community. I began growing, changing (You can read more about my growth, here). I had seen God work in our lives and I was ready for more. Except, I wasn’t. Not the way He was moving.

I joined a book group with my church. We were doing a Priscilla Shirer study on Jonah. In the first video she asked what our “whale” was (our “interruption,” our call to God). She gave multiple examples, one of which was a special needs child. I cried. I realized then, really for the first time, that my boy child may be dealing with more than delays. He may never be typical. But more than all of that, I realized I had been blaming myself for the delays my son was experiencing, was battling. If only I had given him the attention I gave my first, he would not be delayed. If only I could handle it all, he would be typical. I know now that these were lies. Whispered by the Enemy, perpetuated by my sin. My pride. And today, God’s grace covers those lies and my sins. With forgiveness. And with HOPE. Hope that it all was for His glory. It is all for His glory.

Bible Reading

I began to make spending time in the Bible a priority. I began to grow. To trust more. To see more clearly. To see grace and to see hope. 

To be honest, I spent a lot of the next months crying. Crying tears and crying out to God. My journal is filled with pages wondering what our present and future would hold, with cries to God for my child, with the tears of a weary mom. And filled with hope. For each cry out to God, there was a Psalm that answered me. (You can read more about my journey through the Psalms in: Road Trip, Truth, and Joy: A Product of Thankfulness & a Provider of Freedom.) I had found grace, beauty, and hope. And I was clinging to it.

Brothers

Life continued to get harder. Boy-Child could not handle the typical one year old behaviors Baby-Boy exhibited (like moving unexpectedly, usually to touch him; loud noises; Baby pulling off his own shoes…), so he would get frustrated and upset. Baby-Boy thought this new found game was fun, making life all the harder.

Finally one day I stopped. I had been on a path of waiting, of hoping for one day. But I could not continue on that path any longer. I needed answers. I needed to know what path we were on. I had my suspicions, I had my doubts, I had my questions. But now. Now I needed the next step. I was ready. Or as ready as I could ever be. I had a community to support me. I was surrounded by prayer. And I was rooted in His Word. In truth. In hope.

We began the process of seeing a neuropsychologist around Easter. The appointments were long and tiring. The paperwork was emotionally exhausting. Through it all we were strengthened, by our community and by our God. The day of the first appointment, as I drove home, God wrote His love for me in the sky. I know it sounds crazy, but the sunset that evening was beyond beautiful. I had friends sending me encouraging text messages. Reminding me of truth. Of hope. Of grace. I received a new courage key in the mail when I arrived home (you can read about my courage and grace keys, here). I firmly believe, that when we look at the seemingly little things, we can see God whispering “I love you” straight to our hearts. We just have to look, to see, with eyes open to a God that loves us unceasingly.

Through each and every hard moment, I cried out to my God. And He heard me. He spoke to my heart. Words of courage, words of peace. Words of grace. And words of hope. He spoke through the Psalms, through words written long ago. Words that are no less true today than when they were first spoken. He spoke through words from friends, through books, through sermons. And each message reminded me of hope. Each and every word showed me grace. And I clung to them.

Springtime happiness

We have since attended our feedback appointment. My sweet Boy-Child has changed in these last months. During this relatively short journey seeing a neuropsychologist, he has grown. He has begun making eye contact. He began speaking. A lot. He began communicating his needs, his wants. And understanding what we were communicating to him. He began regulating himself when the environment around him was hard.

Truthfully, I didn’t see the changes until after our appointment and a friend asked me how my Boy-Child was doing. Then, my eyes were opened. I saw. I saw the changes. The growth. The veil that was torn. And as each day has come and gone, I shout for joy. I shout for His glory. I stand in hope. And I stand strong.

THE FEEDBACK

Our appointment yielded that Boy-Child suffers from severe anxiety. As a three year old.

As his mom, as any mom, these words were hard. I was prepared for an altogether different diagnosis. Not for this. Not for something that runs in our family lines. Not in a child this young. That night I was upset. I was confused. I did not understand the hope the doctor had. That my husband had. I did not understand this diagnosis. At all. I did not see the next steps.

But that night, as I sat. As I wrote. As I cried. I realized that the hope was blinding me. We could learn to navigate this. We could all grow in understanding severe anxiety. And he could be typical. Life will not be easy for him. For us. Anxiety is something Boy-Child will always live with. He will always need to understand it and manage it. It is something that will be difficult and will affect him. But it is something we can intentionally speak about, learn about, and teach him.

We now find ourselves in a sort of meeting place. A middle ground between the hard days of the past year and a half and the beautiful, hope filled days of our future. We have days that show me the joys of this new life. The adventures to be had, the changes. But there are still days that remind me of the past, of the hard we have already battled. These days keep me planted in the now. They remind me of how far we have come and to continue to work in each and every moment. To help him, to work with him as we battle the anxiety and the resulting rigidity and sensory issues.

The days are still hard. Baby-Boy continues to be a trigger, as do the changing seasons, the dropping of seeds, the revival of insects. But with each trigger, each challenge we now know what we are fighting. We are fighting anxiety. Instead of pretending it does not exist we talk about his fears. We are intentional, purposeful with every.single.moment. Though it is exhausting, we have seen the fruit from it. Already. So quickly. He is learning. He is understanding.

And it brings me back to hope. Even on the hard days, on the days so like the ones from a year ago. Because, now, my son can tell me he loves me.

Because now my sweet Boy-Child does more than scream – he can tell me what is scaring him. He shares his thoughts with me. And I can point him to One who hears him. Who hears his fears and will protect him better than I can.

Today, I can help him be less afraid instead of crying with him.

The days are still hard. But there is hope. Hope in each day. Hope in each word spoken. Hope in each moment.

Though our journey is not over, there is hope in our journey. And there is a promise: that it is for His glory. And that, dear friends, is enough for me. 

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This post is a part of the Tell His Story link up with Jennifer Dukes Lee, because I believe each part of this story is telling of God’s glory and grace. His love and mercy. Also, the Grace & Love link up.

A Grateful Heart link up with Ember Grey, because through it all, I am so so grateful for His hope.

Jennifer Dukes Lee   GraceTruth-300x300Jan2015GHMButtontransbkg_zps55af070d

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34 thoughts on “Hope in the Journey

  1. “Though our journey is not over, there is hope in our journey. And there is a promise: that it is for His glory. And that, dear friends, is enough for me.” Yes! From a momma to a special boy, this is beautiful truth that I’m so grateful to find. Blessings to you and your boy-child!

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  2. This is a very hope-filled story, and I’m glad that as time has passed, that your family has gotten more and more answers and is in the process of helping him grow and mature in the best ways he can–but I can only imagine how frustrating it is when the process is slow. A completely different health scenario, but the beginning of your story reminded me of how my mom hounded the doctors for answers about why my little brother was seemingly never going to start talking. Their answer back then? It was that she was just used to girls, that boys’ verbal skill develop slower. So many times parents can sense that something’s off before a doctor can. My brother didn’t start to talk till after he was three, and it wasn’t until he was a preteen that he was finally diagnosed with 50% hearing loss–a ridiculously long time for the medical field to keep brushing my mom’s concerns aside. Having some sort of medical answer helps so much, since it can give both your son and your family helpful life strategies!

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    • Thank you. We heard things like that – but actually from family and friends. It was so hard going through something, but having people close to you think you were crazy & trying to find problems where none existed. I am so thankful to understand more, and that we never gave up on him. His growth in the last year and a half is amazing. I mean, right now, he’s singing along to worship songs on the radio. This growth would never have been achieved if we didn’t keep pressing in, keep pushing forward to help. Despite everyone else. I cannot imagine how hard that must have been for your family. These unseen needs are so difficult. For everyone it touches. Thank you for stopping by!

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  3. I loved reading this! It’s amazing how God has worked in you SO much through the entire thing – from when you first had concerns until now – you’ve grown SO much! Proud of you & so grateful to be your friend ❤ Love u!

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  4. I had so many feelings reading this! And for that I’m grateful and glad to be able to take part in what you share. I don’t have children and can only try to understand what you’re going through. But I wanted to share with you what this also gave me, that this post (even though it wasn’t the main message) put words on feelings that I didn’t even know I had. The way you talk about “community” made me realize that that’s what I’m missing. A solid, safe community where I can grow! And I miss that, it’s a feeling of loss and longing and thanks to you sharing this story I can now put those words on the feelings that I have. I hope this makes sense to you, if not I’m hoping I’ll be able to explain this summer, or I might just hug you and cry for an hour out of pure thankfulness and gratefulness, that God has placed you in my life! That’s all!

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    • Oh dear friend. I do so understand. I have stood where you are standing. And I know. I really know. And I can tell you, that living in community is so worth it all. It is hard. It is messy. And really, it is so, so vulnerable. It makes me feel unsure and strange. But then. Oh my. Then it is just beautiful grace. Because when you step out, intentionally seeking, craving community – you are met with just what you are searching for. And it is grace. Honestly, Jen, this is why we moved. This desire, this need for community. And I am constantly amazed at the ways God has used it in my own heart already. In my journey with my little. To hold me up. To carry me through. And to continue to point me back to Him when I start to forget, when I let the journey way me down. When I lose hope.
      Love you, praying for you. And I cannot wait to see you this summer. Know that I am here for you. That you are part of my community, even if it is countries apart. ❤

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  5. this is BEAUTIFUL. my pastor once said that hope is the sigh of relief at the end of the day that says “it’s all true” – it being ALL OF GOD’S PROMISES. that he’s there, that he redeems and restores, that he’ll give you courage and bravery and strength.

    and i’m so glad you were able to cling to GRACE and not give satan the glory of your hurt and confusion.

    keep on keeping on.

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  6. Oh what a beautiful post. It nearly brought tears to my eyes, were I anywhere else but the office they would for sure be leaking through my eyes. I am sorry one so young must deal with such a terrible and truly draining mental disorder (as someone who has it as well). However I know that through grace he will overcome. God Bless your family and your son

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  7. Tears for your precious, perfect family. I love your story and how it is laced with hope and trust in God. God gave your baby boy the sweetest and loving mother – you. He knew you would be the perfect mom to walk through life with him, cover him in prayer and hold his sweet little hand. Such a beautiful picture. Blessings friend.

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  8. Your story is beautiful, raw and so vulnerable. I am blessed to have gotten a glimpse into your grace journey. I am so thankful that joining community and surrounding yourself with God’s word has helped you on this path your are on. Blessings along the way as you continue to discover what’s next.

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  9. Wow! What a journey you’ve been on with your little one. Praise the Lord that you’re getting answers and that your son is growing. Such an amazing reminder of both grace and hope!

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  10. This story is told so beautifully. It’s just brimming with hope, and I am so glad you got some answers and direction. You are an amazing mother. That is so clear. Thanks for sharing this all…..I can’t imagine how many people you are helping with your words!

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  11. “I can point him to the One who hears him.” How beautiful that God has grown you and your son to this point – where he can express a need, and you can point Him to Jesus. His grace is indeed always enough, and I’m so glad you shared this testimony at Grace & Truth!

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    • Thank you so much, Jennifer. I am so thankful for this journey – though it has been so, so hard. We have both grown and I know we will continue to grow. Thankful for the story my Boy-Child will one day share of God’s strength and love for him. 💛

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