A Father’s Perspective on Parenting a Child with Special Needs

Editor’s note: Today, we welcome this moving contribution by Ben Ewing, the husband of our contributor Jeannie Ewing. Please join me in thanking Ben for sharing his perspective as a father raising a daughter with special needs. LMH

Ben Ewing with his daughter Sarah

Ben Ewing with his daughter Sarah

There are few moments that I can recall in my life that have had massive impacts: graduating from college is certainly one, followed by marriage being another (and certainly greater) event. The birth of my first daughter ranks in there as an impacting experience too, but these are all happy occasions, and one would expect a happy occasion to be something that brings joy to the heart. Not all experiences that have a lasting impact are necessarily happy, but rather, some suddenly become shocking because they have changed your life and your worldview forever. If I were to gauge the impact and shock of an event and think of what has changed the course of my life there is only one that comes to mind: the birth of Sarah.

It was March, and I remember the weather being windy and cold with freezing rain. Jeannie had given pretty solid indications she was going into labor, and I felt happy and confident about the whole process. We’d done it once before, and going to the hospital was easy for me. Thinking of the first time I would meet this little girl and the future we would share together as a family was something that quickly warmed my soul and brought praise to God who knitted this little girl in Jeannie’s womb. The labor progressed as fairly normal, and when it was time for delivery, this stubborn little girl just wouldn’t come out. I was slightly puzzled by this, since everything from our sonograms showed a normal little girl. I was tired at this point, but certainly nowhere near the exhaustion of Jeannie who had been in labor for 24 plus hours. The news came for a cesarean, and Jeannie was devastated, since that is what she was dreading. In the back of my mind there was a nagging feeling of something not being right, but I held off those thoughts, because I knew that Jeannie was counting on me to be a source of strength when it seemed her world was falling apart from sleep and worry.

Once she was wheeled into the operating room, I soon followed and sat by where her head was positioned. I honestly wanted to watch the operation taking place, but I knew that if I did, I would blurt out to her what was going on, and I don’t think that would have been appreciated at that moment. Hormones, sleeplessness and anxiousness can do bizarre things. The operation went beautifully, but it was after this moment when my world fell apart. The last ounce of strength I was holding onto was now held by God’s grace alone.

I saw her. I saw her hands, her feet and her poor squished nose and brow. I knew something wasn’t right, and I was now standing on the precipice of my own little bubble being popped unceremoniously. Something was wrong with Sarah. She screamed like a newborn, but she didn’t look like one to me. Her webbed toes, mitten hands and pronounced brow had suddenly become hard to look at, yet, once again through God’s grace, I was able to open my heart and arms to her. The selfish, egotistical side of me was suddenly at war with the humble and providence-seeking side. It felt like two armies at a fever pitch when they had just clashed swords against shields in a swirl of action. God had knocked the wind out of me, and just like a slender glass vase that has shattered into a million pieces, I never thought I would be put back together.

Every father wishes for their boys to exude manliness in all of the biblical sense and for daughters who are beautiful and embody the quiet strength of Mary. This was not meant to be for Sarah. I don’t mean that I don’t find her beautiful physically, but I find beauty in her joy. In this year since her birth there have been many questions and many trials. God has asked me to sacrifice a lot, but in so doing He has turned the meager amount of bread and fish I can offer into great blessings. Sarah has come through her surgeries and challenges with a joyful heart and courage beyond measure. This tiny child has taught me more about sacrifice than anyone I have known. She goes through it all with a smile.

At times it’s difficult to bear those initial thoughts that I’ve been plagued with from her birth: thoughts that she would have been better off if she had quietly passed away after birth or through miscarriage, thoughts that we would all feel guilty about having because it puts our selfishness squarely into focus. I see the providence now in this little girl. Her large blue eyes staring back at me in an adoring manner melts my heart and helps me come to grips with my first thoughts about her. This little soul will grab onto your heart and never let go. She will shake you from your little world, and make you question what you see. She forces everyone to view her soul and not her perceived defects. This is how she has transformed my life. It is easy to have your eye drawn to physical beauty but most difficult to look at those who do not meet the worldly definition of beauty. Once you spend any moment of time with Sarah, however, those thoughts quickly fade, and you cannot help but look for the soul in each person. You seek the human soul, because you question what the world values. You begin to strip away the exterior and look for the interior.

Many times as fathers we leave the emotional aspect to the mothers to talk about and relate to others. We just listen and nod and grunt in approval while so many other thoughts that are left unsaid are never verbalized. I suppose in some way we are built to be involved in action. Work, play, building, fixing, mowing or any of the numerous tasks that fill our day are meant to be ones of action. Contemplating and beginning to come to grips with those things that devastate our own little world are not always things that we can verbalize. This must change. I believe that God is always calling us to action, but many times those actions are not what we think. The action of contemplation, of moving beyond the superficial is critical and will help us to be better fathers. Prayer and lots of it will help us through this world of contemplation and bring us to what matters most: God.

When you see God in what appears to be the most devastating of situations you finally come to the heart of what is truly important.

Copyright 2014 Ben Ewing

2 Comments
  1. April 25, 2014 | Reply
  2. Profile photo of Jeannie Ewing April 28, 2014 | Reply

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