Winding Your Way: Illuminations on Your Path of Parenting A Child with A Disability - Introduction

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The first moments after the birth of a child are indescribable. Those first breathless moments when hopes, dreams, and expectations fill every sense as you hold that precious, little life. First time parents live minute to minute, breath to breath.  Changing, feeding, burping, and bathing are new challenges that require diligence, a library’s worth of research and reading along with frantic phone calls to family and friends. New parents tip toe into the nursery to check their baby as she sleeps. As confidence grows, those breathless moments remain the same, but the parents’ world expands. Life isn’t breath-to-breath, moment to moment. Life is now lived in chunks. Teething, potty training, preschool, play dates, first days of school, middle school, driving, graduations. Parents rely on the “more experienced” parents to lead the way, set the stage, and mentor them through the ups and downs and ins and outs of parenting. Generations have come and gone in this same way and most parents settle into a reasonable level of comfort in their parenting through this school of hard knocks. As children grow, parents share stories of their first steps, handling separation anxiety (both for parents and children), birthday party planning, first sleepovers, teaching your teen to drive and college decisions.

Parenting is a shared experience. Parents have an innate need, almost by addiction, to share their successes and failures and get validation that their child and whatever oddity is happening at that moment are “normal”. You can hear collective sighs of relief daily as parents all over the world hear the comforting words, “Oh yeah, my kid did that!”. Along with concerns, parents also share milestones and achievements. “Katie made the gymnastics team” or “Matt is playing in the music recital this weekend”.  Novice and experienced parents alike understand this need to share. It is essential in building confidence in parenting skills. It instills a sense of belonging. By having this sense of belonging, the hopes, dreams and expectations they envisioned as they awaited their children’s births, in those breathless first moments holding that new baby, grow, and flourish in the reality of their lives and in their own self-worth as parents.

But what if the parents have a child whose life experiences are so vastly different from most children that the “Oh yeah, my kid did that” is never heard?  What if the achievements the parents want to share aren’t even on the radar of most parents, such as “Leah only has to test her blood sugar twice a day now”? What if the expectations, hopes and dreams most parents have for their children are not possibilities? What are the ramifications to the parents, the child, their family, their sense of belonging and self-worth? Millions of families face this uncharted water each year as they share those first breathless moments holding precious, little lives that will require so much more than the “normal”. They have needs that are unfamiliar and not found in book after book on bookstore shelves in the parenting section. They face blank stares when they relay stories of endless doctors’ appointments and tests. They face periods of grieving when reality looms large and they recognize that they will not share the same milestones with most parents. They face people expressing more pity than true understanding, and they face the daunting task of overcoming the bewilderment of others who can’t comprehend that these parents see the child themself as far more than the disability or disease. This book is the sharing, the fix for the addiction to hearing the words “what you feel is normal – I felt that”. It is the mentoring and the leading the way to the grand unwrapping of the gifts families of children with disabilities receive every day and sharing them with the world. It is also the connection to build community among all parents and strive for that true understanding…to find ways to share, together.

My son, Alex, is a pretty typical just turned thirty-year-old. He likes video games, is addicted to sports, fantasy teams and doesn’t get enough sleep. Someone peeking in our world for a moment or two would see a seemingly “society normal family”. A little longer look and you would see a family that just has a different normal. There was a day when I wondered not just if we would ever feel normal, but would we ever be OK?  Really OK. There was a time when we were concerned for Alex’s life – would he survive? There were times we were caught up in the moment-to-moment care for him that the world seemed to spin right by us.  It hasn’t been an easy journey, but it has been a journey where we’ve learned that the world’s normal is not necessarily the only normal or the right normal. We have learned to find joy in our life together and to face the obstacles together. We have been able to come to grips with who we are as a family and to us, that is the definition of normal. It is about recognizing that everyone in the family has different needs and the necessity to work together to understand those needs. It is about seeing the joy, the fun and the silly in our everyday things – even things like leg braces, wheelchairs, blood tests and special diets. It is also about understanding that it is very normal to ask why and feel exhausted or frustrated. As a family of a child with a disability, there is a journey to be taken. A journey that most likely starts in a place of surprise or fear or denial and can meander into a place of acceptance and contentment. Sometimes it is a quick journey; sometimes it is long and winding. Sometimes it goes one step forward and lots of steps backwards. We were a very normal young family. Two kids, ready to take on the world and enjoy play dates, school activities, playing sports, driving lessons and first dates - all the milestones and joys that come with parenting. Then we hit a roadblock that made us feel very different from everyone else. It made us kind of lose our way and our identity in our emotions and fears. However, we have gotten past that and realized that we have been normal all along – not society’s normal – but the real normal this time. That is the biggest part of the journey as a parent with a child has differences and needs outside of society’s “normal range”. Making your normal. Finding your way to see how the cards you have been dealt can be played out in a way that makes you feel connected and whole as a family and as individuals. This is the story of our journey and lessons we have learned along the way.

Personal Focus:

·         People often say, “God doesn’t give you what you can’t handle” or God sees you as a “special person” to give you that special child.  I don’t buy into that language. It often makes me cringe. It sometimes makes you feel badly when you feel like you can’t handle it. It is OK to feel overwhelmed or have bad days or want to just give up. Every parent has felt that at one time or another. It can also make some parents feel like not everyone is capable of loving their precious child (only the special chosen parents) Eeeek! I think people believe they are being supportive and encouraging, but to a family just keeping their head above the many challenges, feelings and barriers, sometimes those words have a sting.

 I believe God asks us to trust Him in all things.  A better way to think about it for me is that our children -  every child -  and all the joys and challenges they bring help you grow the skills you need for who you are to become for this world….who God intended you to be. I think this is true for all of life. We can look at challenges straight in the eye and ask God what we are supposed to do with this? How does it fit? I pray that God helps us feel his presence in and through it all.

·         As I write this book, I’m praying for you. I’m thinking about our family’s journey and how it might mesh with yours. I’m praying that I was able to let go enough of my own words to let them be shaped by the Holy Spirit into something that is helpful and gentle and approachable. I ask for your prayers for us.

At the end of each chapter, you will find some starting points to help you with your own personal focus. I’m praying for all who read this with the hope that these touchpoints will provide positive, thought provoking nuggets of hope and help as you go along, and that your time with this book will be blessed.