Winding Your Way

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. As parenting confidence grows, those breathless moments remain the same, but the parents’ world expands. Life is now lived in chunks. Teething, first days of school, driving, graduations. Parents rely on “more experienced” parents to lead the way, set the stage, and mentor them through the ups and downs of parenting. Generations have come and gone in this same way and most parents settle into a 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. Novice and experienced parents alike understand this need to share. It instills a sense of belonging and parenting confidence. Through 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 of those realities? 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 books on bookstore shelves in the parenting section. They face blank stares when they relay stories of endless doctors’ appointments. 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. It’s 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 typical thirty-year-old. He likes video games, is addicted to sports, fantasy teams and doesn’t get enough sleep. Someone peeking in our world 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? There was a time when we were legitimately concerned for Alex’s life. 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 the world’s normal is not necessarily the only normal or the right normal. We’ve learned to find joy in our life together and face obstacles together. We’ve come to grips with who we are as a family and to us, that is the definition of normal. It is about recognizing everyone in the family has different needs and the necessity to work together to understand those needs. It is about seeing the joy and the fun in our everyday things – even things like leg braces, wheelchairs, and blood tests. It’s also about understanding that it’s very normal to ask why and feel exhausted or frustrated. As a family of a child with a disability, there’s a journey to be taken. A journey that most likely starts in a place of surprise, 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, 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’ve 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’ve 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.