But I haven’t always been able to say that with heartfelt meaning. The journey from shock to acceptance to thankfulness has been a long and exhausting one.
No parent would “choose” to have their child afflicted with an illness, physical, or emotional condition that limits their quality of life or in many cases shortens their life span. We all dream, pray, and plan for normal, healthy children. But what happens with normal takes on a new meaning?
For us, there were those moments (and sometimes still are) when you ask why? Not in the sense that you don’t want to be bothered or inconvenienced but why does my child have to suffer? Why can’t they know what it is to live and function normally? Those questions, as you know if you parent one of these blessings, will go unanswered in this lifetime. They are a waste of time and a thief of the glorious moments that parenting should bring.
Only when we decide to fully embrace our child’s condition can we begin to move from acceptance to thankfulness. Many people can accept that their child has a diagnosis but not so many can fully embrace that new identity. Have you ever wondered why some parents with special needs children rally around the diagnosis and join groups, hold fundraisers, get passionate about the “cause” and others just mutter through the days overwhelmed and frustrated? I believe it has to do with embracing. Not to say everyone has to host fundraisers and speak publicly about their child’s condition. Sometimes just living the days out are so exhausting there is little time left for ourselves much less to help the cause. But what I have observed and know personally is that when I began to “wallow” or feel sorry for myself, I lose sight of the blessings that Emma’s diagnoses (and there are many) have brought into our lives.
Our sweet and sassy, Emma Grace, has given us 13 years of the most unconditional love we’ve ever experienced. She has introduced us to a world of physicians, health care providers, therapists, and other families that we would have never been privileged to know. She has stretched us in the areas of knowledge, patience, perseverance, faith and grace. She has forced us to slow down and celebrate the tiny milestones and daily activities that we might have just breezed over otherwise.
Even though she is non-verbal, she has MUCH to say. In her quiet gestures and sign language, she is our teacher. She knows what it is to enjoy the simple things in life: a long bath, a walk pushing a wheelchair when you have to go slow enough to notice the flowers, the joy of simply sitting and holding hands, the fun of passing cards back and forth as if it is the most enjoyable activity of the day, and the incredible way she snuggles when it’s time to sleep.
As her parents, we haven’t arrived by any means. With each surgery, or new set of issues, there is always that period of time where we find ourselves learning to accept again. And there are plenty of days, when we share those feelings of “I can’t do this today” or “why can’t she just know what it is to speak for herself or not wear diapers or walk on her own.” Trust me…there are plenty of those moments.
But there are also many moments when we are thankful for the life God planned for her and for the amazing gift He gave to US when He chose to place her in our care. I wouldn’t want her any other way…for she is fearfully and wonderfully made (Psalms 139:14).