Regaining Perspective

I've been intending to write again for quite awhile now. Really. It's been on my "to-do" list, always hovering around somewhere in the back of my mind. I could blame my two-and-a-half month lapse on extra activity. I could blame it on my nursing baby. I could blame it on many things. But...if I'm truly honest, the real reason is that I've simply lacked the inspiration. As a writer, when a fresh idea hits me, the words flood my mind and my soul, and I simply have to get them out! My loving and supportive husband always ensures that I find a way to do so, nursing baby and all. Yet lately, I have simply felt dry.

I have been writing about this life of raising a child with special needs for over eight years now. In those early days, I could hardly keep up, because there was SO MUCH I just had to get out. I rarely lacked a direction or inspiration for writing, as there was just so much story to be told. There were monumental challenges and monumental breakthroughs. There were new discoveries both internal and external all along the way. There was a sense of purpose and satisfaction that, by sharing our story, I could be a source of encouragement to others who may be walking a similar path. There was the exciting joy and the nervous vulnerability of the 2014 release of my book Reflections from Holland: A New Mother's Journey with Down Syndrome, which I dedicated to "everyone who has ever loved a child with special needs." Writing has always been a passion of mine, and life with Benjamin has given me a special outlet through which to channel it.

So, why the writer's block in this season? I'm sure it is a conglomeration of many factors, but the few things I can most readily pinpoint are the relative plateau I feel with my son's development combined with an underlying sadness that has been clouding my days as of late. Next month we will celebrate Benjamin's 10th birthday. It's hard to believe that we've had our sweet son with us for a decade now, but as my firstborn is about to enter into his double digits, I have had to come face to face with some new layers of grief. I have had to grapple with the fact that what I once envisioned for my son by this age is very different from the reality in which we live.

When Benjamin was little, I would draw so much strength and encouragement from peering into the lives of older children with Down syndrome, via books and articles, social media posts, and the local support group. As time went on though, my husband and I recognized that our son's development looked increasingly different from others in the Down syndrome community. Two years ago we received the fateful dual diagnosis that he has autism as well. You can read more about that here. In many ways we are still learning about and adjusting to this unexpected twist in our journey with our son. It has not been an easy road.

Walking the dual diagnosis path can be a fairly lonely trek. We are blessed to have Benjamin enrolled in an exceptional private school that is specifically designed for children with autism, and he is doing very well there. However, we've also had to realize that our world with Down syndrome looks VERY different than those who do not have the additional challenge of autism. The same stories that used to bring me hope and encouragement often just leave me feeling more sorrowful and despairing as I longingly wonder what life would be like if Benjamin only had Down syndrome. Would he be talking now? Would he be potty-trained? Would he be interested in new activities? Would we be able to enjoy more family outings without the fear of meltdowns? Would he show affection to his three younger siblings? Would he actually interact with them? Would he be able to connect on a deeper level with his dad and me? Would he have friends he enjoyed spending time with? If I dwell on these thoughts and questions too long, the grief can begin to feel crushing.

When Benjamin was born, I had to grieve the loss of my expectation for a child who was healthy and whole. In time I knowingly or unknowingly created new expectations for what life with Down syndrome would look like for my son. Since receiving the autism diagnosis, I have had to grieve the loss of those expectations as well. The future now feels so uncertain, though it was obviously always uncertain to begin with. We are never guaranteed what tomorrow will hold.

I adore my son. I love him deeply. But lately, I have really been hurting inside. I've been trying to focus on enjoying him in our present reality while simultaneously grieving and longing for what could have been. At times I've wrestled with guilt for feeling the way that I do. Today, though, I realized that I didn't need some fresh inspiration to write. I simply needed to be honest about where I'm at--right now--instead of waiting for my emotions to get to where I wish they would be. Because just as the future is uncertain, so are my emotions. They will always ebb and flow, and they need to be taken in stride. I remembered that simply getting my thoughts out is often all I need to help me regain a fresh perspective. In the introduction to my book I wrote, "In the Psalms of the Old Testament, King David poured out his heart before the Lord with unhindered abandon. He expressed every emotion known to man. In the midst of this all, though, he clung to the Shepherd of his soul. This has been my story; clinging to Jesus only to realize He is holding me securely in His hands while I do my best to trust Him with each new step."   

So, here's the true perspective I'm reminding myself of today...My hope cannot be in a certain circumstance or outcome or dreamed up future. My hope must be in a Person--Jesus Christ. Anything else is shifting sand. My expectations for what life would look like for Benjamin have had to shift and change many times. But Jesus never changes. His love, His goodness, and His nearness are constant no matter what difficulty may come my way. His eternal Word contains the truth to securely anchor my heart, no matter the storm.

When I feel weak and overwhelmed He tells me:

"My grace is sufficient for you, for My power is made perfect in weakness." --2 Corinthians 12:9a

"Come to Me, all you who are weary and burdened, and I will give you rest." --Matthew 11:28

When I become fearful about my son's future He tells me:

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." --Matthew 6:34

"The Lord makes firm the steps of the one who delights in Him; though he may stumble, he will not fall, for the Lord upholds him with His hand." --Psalm 37:23-24

When I'm struggling to feel peace He tells me:

"I have told you these things so that in Me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." --John 16:33

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." --Philippians 4:6-7

Ultimately, He reminds me of the temporary nature of this life and its struggles. Tomorrow is Easter Sunday when Christians around the world celebrate the Resurrection of our Savior. We remember that our hope is not to be placed in this life at all but in the eternal life to come. Eternity is what truly matters. Loving and trusting Jesus in the midst of this uncertain earthly is what truly matters. Loving others and pointing them to His grace and mercy is what truly matters. Finding purpose and contentment in Him is what truly matters. In the end, it's all about Jesus. It may even be that He allowed us to walk this unique journey of raising a child with special needs for the very purpose of knowing Him more and making Him known. Through this journey I have learned to love and trust Him at a deeper level. Through this journey I have seen His power on display in our lives. Through this journey I have discovered great joy in the midst of great pain. And through this journey I have had the opportunity to share the testimonies of His love and faithfulness in our lives with others I would never have connected with had we not been asked to walk this road. I think I'm regaining some much needed perspective!