Tag: special needs

  • Point of Focus

    A photographer holds her camera and lifts it gingerly to take a picture. She alone decides what the picture and point of focus will be. What she chooses to be that point can dramatically alter the entire picture. One object will become sharp and clear while the rest of the contents within the frame will be slightly out of focus but still present. The photographer chooses the point to which she wants to draw the most attention. It is what she believes to be the most central, important part.

    Our minds take pictures of events from our lives. Perhaps it is something small like a trip to grocery store. It could be a relationship or event. It may even be an entire life. As my heart gazes at the snapshots of my life, I realize that I alone have the power to change the focus and reveal what is imperative and what is merely background. Unlike looking at someone else’s work of art, I am the one with the power to choose the focus. The composition is mine and mine alone.

    An easy example of this for me to share is my beloved Wesley because life with him is far from ordinary and requires that I choose my focus almost on a daily basis. It would be easy to look at me from the outside and wonder how I manage. Wesley is 16 but cognitively around two years old. He is incontinent and has a feeding tube. He needs pureed food because he does not have the oral motor skills to manipulate the food and chew. He is non-verbal and uses simple sign language to communicate. He often awakens at four in the morning and begins his day. He has melt downs and hurts himself. There are many reasons one might look at my life and pity me or even, perhaps, be grateful they are not me.

    But then there is the part of my picture where my point of focus is wholly directed. It does not remain on all the things he doesn’t do or the ways caring for him can be and is, at times, challenging. My focus is squarely on his smile and his soul deep laughter. It is on his tight hugs that remind you of the kind of hug you would receive if you were saying hello to someone you love deeply after a long absence. But his hug is because he is happy to see you. Or because it is Tuesday. Or because you look like you need one. Or because you exist. He gives them to family and to strangers. He gives them because his heart is so full of love he needs you to know that you are loved.

    My focus could have been on all the ways I felt robbed. Yes, I did spend time when he was an infant grieving. I lost a dream and it was a significant loss. What I couldn’t know then was that new dreams were created for me. Dreams so simple yet magnificent in their beauty. When other parents were charting their children’s progress (seemingly always ahead of schedule) I was praying he would be able to turn his head. When other children were off to pre-school to learn their letters I hoped he would walk. When other parents hung their honor roll student certificate on the refrigerator I celebrated that he unzipped his jacket. But I celebrated.

    I don’t look at my son as all the things he can’t do though that could have easily been my focus. My heart couldn’t tolerate that and I would be a different person if it could. I believe I would be angry and bitter. I would spend my days grieving rather than celebrating. I am joyful and grateful because I choose to be.

    I concentrate my focus on all the things that make him exceptional. I focus on what was gained and not what was lost. All these incremental choices led me to purpose that my son’s special needs would be a blessing and not a curse. My heart, my head, and my soul had to willfully decide that would be our truth, our focus.

    This is the same picture of my beautiful son hugging one of his favorite people on Earth. The first one has a point of focus on his face. His smile is infectious. His eyes are full of life and purity. Everything else is blurry. All that matters in this first picture is love. It breathes life and gratitude for all we have been given. It displays that he is exactly who he was created to be. Indeed, he too is fearfully and wonderfully made. His chromosome set may not be complete but his soul is entirely whole. The first point of focus shows how he is extraordinary in the most profoundly, beautiful, intrinsic way.

    The second picture has a point of focus on his wheelchair. One can not see his beautiful green eyes. His smile is barely noticeable. His disability is all that matters. This point of focus breathes despair, sadness, and the constant reminder that he is not normal in the most profoundly, simple way.

    I alone choose my focus. I determine the direction of my heart. I choose love. I choose joy. I choose life.

    Whether my picture is a story of triumph or tragedy is entirely up to me. Please let it be that I choose my point of focus wisely and choose triumph. Every. Single. Time.

  • Never lost

    My middle son, Wesley, has deletions on his first chromosome and is on the Autistic Spectrum. Life can be and often is overwhelming for him. His haven, his refuge is the car. He will ask several times a day to go for car rides. It is part of his routine and for twenty minutes several times a day he can “re-set” in the confines of my minivan where the sensory input he is receiving is limited and predictable.

    We have found a few beautiful routes that bring us through Western Albemarle County. The back roads offer horses and cows, mountains and fields. We see gorgeous wineries and tiny cottages.  When we catch the sun at the right moment it takes my breath away. Indeed, I frequently pull the car over to snap a picture of God’s masterpiece.

    Last night I took him on one of the routes I normally take him on during the day. As I was driving I realized how very different it looks under moonlight versus the sunlight. I thought of the irony that the darkness exposed things the light hid. As I continued to drive I could see the silhouette of the mountain in the distance. The majestic site has been a part of my daily living, even subconsciously, and I know the mountain well. I know its shape and size. I recognize the skyline and where it dips and peaks.  I had glanced at it countless times over the last fourteen years. My familiarity with it at some point made the mountain become a point of reference.  It wasn’t as if I had made a concerted effort to study it.  It’s presence in my life was within a close enough proximity that it just became known to me.

    As I continued to drive I realized my GPS was frozen, I had missed a turn, and was on an unfamiliar road. For a moment I felt a tinge of panic trying to figure out where we were. Then I realized if I just kept my eyes on and aimed for the mountain I wasn’t lost. It’s enormous, unmistakable presence even in the dark and in the distance would be my guide. I only needed to know my position relative to it to be safe. The road I was on twisted, turned, and narrowed. At times it even went back on itself. My position was constantly changing but the mountain remained steadfast.

    Even in the dark and foreign terrain I could tell which direction I needed to go because of that resolute and unwavering mountain. Had I been a visitor in an unfamiliar land I would have surely been lost. Had I not paid attention to the intricacy of its shape and size and known it well I might have been confused and followed the wrong mountain.  If I did not appreciate that which surrounds my home and makes it mine I would not have known which way to go.

    We found our way back to the main road. The detour we had taken was not frightening. I was never hopeless or needed to use any other means of finding my way home other than my knowledge of the mountain. I was never lost.  We turned the music up. We danced in our seats. We enjoyed the journey even in the darkness through the unknown. See, it was the certainty that no matter which way the road took us I could maneuver my vehicle ever homeward that gave me peace and kept us safe.

    Life does look different in the dark than in the light. Often we find ourselves in confounding situations. We are thrust suddenly on a path we do not recognize nor did we anticipate. Sometimes it is by our own fault and others it is because of the actions of someone else. But I offer the notion that even in the midst of uncertainty and even darkness there is always music, always laughter, always hope.  You are never lost. You can always find your way if your eyes are fixed on He who does not change and who will guide you safely and triumphantly home.

    road