Patience to Endure

Tag: syndrome

  • The Root

    “Expectation is the root of all heartache.”

    Have you ever asked a pregnant woman if she was hoping to have a boy or girl? More often than not her response is, “I don’t care as long as it is healthy.” But what happens when your baby is born and it is not healthy? What happens when they hand him to you and say words like “genetics, syndrome, anomalies, life long challenges.” What happens when your reality is the nightmare of others?

    You hope but with a hope that is boiled down to its very simplest form. You no longer hope of tossing a football or ballet lessons. You hope that the medicine stops the seizures. You hope you can learn to run a feeding tube pump. You hope the surgery is successful. You hope the doctors are wrong and that your baby will live to see another day. You hope you will somehow survive if they are right.

    When I learned to hope for the very basic necessities in order for my son’s life to continue I learned to be thankful for everything else. There have been several times in Wesley’s life when there wasn’t even an expectation he would live. In the absence of expectation hope is still not defeated and the way is paved for something far greater. I have learned to live with no expectations. The fruit that blossomed from that barren tree is excessive gratitude.

    Often expectations lead to disappointments and heartache. When we break free from those expectations it is more difficult, though not impossible, to feel disappointed. When you have nothing you are grateful for anything. Sometimes the converse is true. When you have everything you are grateful for nothing.

    Anyone with children has likely read, “What to expect when you’re expecting” or “What to expect in the toddler years.” Entire books are dedicated to letting parents know what to expect complete with charts for milestones. I think we often actually find security in living within the lines. Yet some of us are given children for whom none of those rules apply. We do not know what to expect and the experts can’t tell us. It all goes out the window and we live one day at a time, one surgery at a time, one test at a time.

    When Wesley was an infant and toddler it was uncertain if he would ever walk, talk, or even eat by mouth. At one year old he weighed only fourteen pounds. His official diagnosis was “failure to thrive.” At the time I felt as if I should receive the diagnosis “failure to mother.” To my heart it was somehow my fault that my baby wasn’t growing appropriately. He wasn’t even on the growth chart, he was well below it.

    His first birthday was spent in the hospital after receiving a feeding tube and to this day it remains part of him. For years I had to bolus feed him every four hours and hook him up to a pump at night. It was an intensive, time-consuming process. Not taping the tubing correctly could result in a kink and the alarm would sound. The tubing could and often did become disconnected but continue to pour thirty-two ounces of Pediasure into his crib. He would sleep right through it and I would find him the next morning soaked. When he finally could tolerate food placed in his mouth years later, even pureed, I was not disappointed that it was only stage 1 baby food. On the contrary, I was overjoyed that progress had occurred. I never expected him to eat so when he could I was exceedingly thrilled. At sixteen he still eats baby food but he eats.

    He is non verbal other than the two words “Mom” and “Bob”. Those are his priorities – his mother and SpongeBob. He uses simple sign for other needs but decompensates when he cannot express something through sign language. He becomes self-injurious out of sheer frustration.

    I used to pray every day that he would speak. I thought if he could he wouldn’t harm himself. I wanted to hear his beautiful voice say “I love you”. I wanted to know how his day was and what happened at school.

    But the day never came when Wesley spoke. God answered, “No” and I don’t know why. Something as basic as speech was a milestone he would never hit. I never expected for Wesley to talk so I am not heartbroken that he doesn’t. I hoped, yes, but instead of living in what didn’t happen I move on. I focus on the things he can do and am grateful. I rejoice in the fact that Wesley does say “I love you” even if it is not in the way I hoped and most would expect. I hear it from his soul’s voice and there is no sweeter way to receive it.

    Living outside the chart of normalcy can be a scary and wonderful place to exist. We have no guideposts telling us if we are on the right path or how far it is to the next stop. Yet there is incredible freedom. Our definition of excelling is the tiniest amount of progress and no accomplishment is too small for an all out dance party celebration.

    When I finally learned to release my expectations I cleared the way for God’s. My disappointments are not His nor are my expectations. What we expect as a culture is not always, perhaps even rarely, the things which God expects. Our society does not value people with chromosomal abnormalities. We expect to have children with the near perfect DNA and above average intelligence. But just what if that wasn’t God’s expectation? What if His expectation is where there is life there is extraordinary value? What if He expects that child with a syndrome would bless every person who came into contact with him like my son does? What if God expects that child to be exalted because he teaches us to give and receive unconditional love? What if God expects us to realize what a privilege it is to have a child with special needs and not the burden as most of society thinks? What if God’s honor roll is not based on the contents of our intellect but the capacity of our hearts? I would declare that the contents of Wesley’s heart are exactly how God intends them to be and he enjoys a place on the highest honor roll.

    How much more magnificent and rich yet simple would my life be if I could release all my expectations to allow room for God’s? As with all hopes, dreams, plans, and expectations God’s are always incomparably better.

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  • Only Hope

    I assist in the Grief Share ministry at my church. Once a week for thirteen weeks I have the privilege of sitting in a room filled with people who have lost a loved one through death. Privilege may seem like a strange word to use but the blessings I receive from being witness to healing and hope even in despair are abundant and precious. I am witness to God’s provision and miracles as their stories unfold.

    The people who come through the door are from all walks of life. They are old and young, rich and poor. Their loses include friends, parents, spouses, children, and grandchildren. Their deaths can range from horrible tragedies to diseases to suicide to old age. The thread that weaves their lives together is that the people lost were deeply loved. They were loved enough that their passing leaves a chasm that, for a while, feels to be filled only with despair and mourning.

    As I get to know my friends through Grief Share I notice that every single one of them NEEDS hope. We simply can not endure the pain without it. Some friends enter and their despair is so gigantic that hope seems impossible yet even in their suffering they long for it. Hope for healing. Hope to not hurt so terribly. Hope that justice will be served. Hope that they can stop crying. Hope that tomorrow will not be so insufferable. Hope that God is who He says He is.

    Hope is an important subject for me personally. As the survivor of loss from suicide I know too well how hope and the loss of it is the literal difference between life and death. Hope was the main thing my husband lost when he chose to die and it was the only thing to which I could cling when I chose to survive.

    When I was thinking about hope and despair I googled exactly that. This image or one similar came up several times:

    20180130_074525The above picture is not my reality. For me hope and despair are not diverged paths. They are companions on the same road. They remain in extremely close proximity for much of the journey.

    Hope is found even in the midst of despair and fear and grief. I would argue that is precisely where it is born.

    When Wesley was just four months old we were invited to a gathering for children with Rubinstein-Taybi Syndrome, the diagnosis he carried for years until advanced genetic testing proved otherwise. I sat in the large room in the hotel as other families entered. I watched nervously as the older children gathered in front of the television to watch the Wiggles. The panic quickly escalated as some twirled and flapped their arms. Very few of the children could speak. I had never been around children with special needs let alone a room full. I was never in that club until that very moment. At the time I wanted to be anywhere else but there. Now, I am proud of and blessed by my membership.

    A sweet couple introduced themselves and sat at the table with us. They told us Wesley was beautiful. They did not pity us but celebrated our son. It was the first time someone validated what my heart already knew – that he was fearfully and wonderfully made. He was worthy of compliments. He was entire. For the very first time since his birth someone congratulated me. In retrospect, that it would be a stranger made perfect sense for they already knew the blessings that awaited.

    As we spoke their daughter wandered off.  At four years old she could still not walk so she crawled over to the table where there was food. With the determination of a girl on a mission she reached up to try to pull herself to stand to see what goodies awaited.

    “Honey, Erica is on the loose,” the wife told her husband with a giggle as a cue to gather their child.

    The father obligingly scooped his daughter up and sat her in the high chair at our table.

    “Bob the builder, can we fix it? Bob the builder, yes we can!” the father began singing with all the passion of a rock star.

    His daughters eye’s lit up, she smiled, and began using sign language to sing along with her dad. It was the first time I realized one did not have to say a word to sing at the top of her lungs and with her whole heart.

    There is was. At that precise moment despair had given birth to hope.

    For months the fact that Wesley had special needs consumed my thoughts and fears.  Each morning before my eyes opened I tried to reconcile the fact that the life I had was not at all the one I imagined. It seemed as if after every medical test there was another problem revealed. I was quickly learning a new language with abbreviations like SLP, OT, IEP, and PT. The doctors appointments and impending surgeries were numerous. I was overwhelmed with the notion that I was not confident in my ability to care for my non typical child and his vast medical needs.

    Yet here was a family sharing my table and special needs was just part of their lives. It was not all-consuming. Their daughter had red hair, loved Bob the Builder, and had a syndrome. It was just on the list of things that made her unique but not abnormal. At some point, I hoped, a syndrome would not define my family but would rather simply be the background music, hardly noticeable unless I purposed to hear it. Maybe, just maybe, we too would find a new normal.

    The truth of my life is that hope and despair are never far from one another. I can not metaphorically stand at a crossroad and follow one while leaving the other behind. They both accompany me. The choice I make is upon which one will I focus. Which will hold my hand while the other walks silently a few feet behind? Which one will help me balance when the terrain is unsteady? Upon which one will I lean when I am too exhausted for another step? Which one will know the way when I will assuredly get lost? Which one will become known to me as a best friend? Which one will I need if my missteps lead me off a cliff? Which one can I say, with confidence, will save me?

    Only hope.

    Throughout the years of my life despair has birthed individual pearls of hope. Each pearl is beautiful but only part of the greater beauty. Pearls are meant to be strung together to adorn the object upon which they rest.

    Over the next several posts I will share other pearls of hope born from despair with the hope of adorning Him upon whom I rest.