Patience to Endure

Tag: special needs

  • Left

    Left

    I confess. I lost myself for a while. When someone would ask how I was I would begin speaking about how the boys were or my mom or my husband. I have one friend who would always stop me and ask, “but how are YOU?” I never really knew how to answer that question. I didn’t know how I was. I didn’t know who I was. I lost her somewhere along the way during the last three years.

    I have been a caretaker in some way for the last 26 years. It intensified 23 years ago when our son with significant special needs was born. It then intensified dramatically 3 years ago when he became very ill and spent a month in the intensive care unit. During that month we were told three times he was not going to make it. Thankfully, he and God had a different plan but we emerged with new medical needs. There are now medications throughout the day, intermittent catheterizations, diaper and dressing changes, doctor’s appointments and documentation. Our son is cognitively 3 in the body of a 23-year-old man with all the perils and potential hazards to be considered when caring for a toddler.

    Being the caretaker of another human is a divine calling. It is a gift and one for which I fervently prayed, begging God to just let our son stay and to allow me to continue to care for him. Yet the awesome responsibility of another life and their literal ability to stay alive is brutal. It is exhausting. It demands all of you and then a little more. Getting lost is easy.

    It is a different life and very difficult to offer glimpses to those who do not live in my world. So much of my time is devoted to tending care that it is far too easy to forget who I am outside of those duties. Without intentionally taking space for myself, I can get lost easily and without even realizing it because all I can do is what is necessary to get through each day. To me, a luxury is a shower or to eat an entire meal without getting up. Self-care is not going to the spa or a winery or attending a concert. In my life self-care is basic hygiene and some days I do not even accomplish that.

    It is quite the conundrum. Some days it is an impossibility. I so intensely care for another there are days it is simply impossible to care for myself or others I am blessed to love. Relationships can be difficult to attend to in the way they demand or deserve. We sacrifice people and plans we don’t want to forego yet my purpose demands it.

    In my experience, most of the time, life will gut you to get you to remember who you are. It will strip you down. It will seemingly mercilessly distill you to the basic element of who you are.

    When I was in college, I had an organic chemistry professor who could not get across to the class the importance of distillation before we began the experiments. It was a night class and most of us had full time jobs. To us it took too much time to do the extra steps. We were already tired from the day. No one wanted to be there a moment longer. It didn’t matter much for the integrity of the course we needed to make sure what we were using was the purest substance and how it was intended to be.

    Distillation is an imperative step used “primarily to separate substances from the mixture to allow for purification or the concentration of a desired component.” It will rid the solution of any potential compounds not necessary for the goal to be achieved. One night our professor intentionally contaminated our solutions so if we did not go through the distillation process, we would conclude the incorrect answer. Every single person in my class that night got the lab wrong. To each of us he simply said, “It must have been contaminated.”

    The distillation process takes heat. It takes time to get to the boiling point and to get rid of what does not belong. It takes patience and waiting during the process. But once all of those unnecessary contaminants are gone, the element we are testing is reliable. It is true. It is pure.

    I sit on my couch on a sweltering hot day. The temperature outside is frigid compared to what it feels like in my soul. This was not a voluntary distillation. Life does what life does. Boiling points have been reached. That which does not matter melts away and I am left with inspecting the elements that are left in their purest form.

    Raw. Pure. Painful. Beautiful. Unimaginable. Overwhelming. Necessary.

    I remind myself the distillation process does not obliterate. It gets rid of the residue. It tests other components. It allows you to separate and discard. It voids contaminants. It is re-birth.

    The distillation process rids me of beliefs about who I am which I have picked up along the way. Some of them were true yet I want, I choose, to leave behind in the residue. Some were never supposed to be part of the compound. They were not mine to hold and could only harm me.

    I look in my flask. I see what is left. It is all those things no one can take from me and I only lose when I give them up.

    Love. Integrity. Faith. Hope. Purpose. Peace. Truth. Determination. Perseverance. Gratitude.

    The process also rids me of names thrust upon me by others and by myself. They are contaminating lies. And so, I cling desperately not to who others say I am or even who I say I am. In my flask all that is there now is who He says I am.

    Beloved. Precious. Worthy. Loved. Redeemed. Accepted. Chosen. Child. Heir. Known. Masterpiece. Temple. Justified. Sanctified. Conqueror. Light. Friend. Creation. Created for good works. Family. Strong. Overcomer. Blessed. Blameless. Sealed. Complete. Hidden. Raised. Free. Victorious.

    I stand up off the couch. I take a deep breath. Gratitude fills my being. Distillation is a gift. It is in the letting go we are left with all we ever actually needed. My list and your list are the same. Our truths are endowed by our Creator as we were stitched in our mothers’ wombs and they are irrevocable. No amount of loss, heart ache, trauma, worry, anxiety, or difficulty changes what you and what I will find at the end of our distillation process.

    Because at the end of our prayers regardless of whether God has said “yes” or “no” is new life, a new opportunity to begin again building upon the blocks of what is mine and who He says I am. That is a pretty good place to start, I’d say. And so I do. One step ever onward.

  • Three Minutes

    I’ve been thinking a lot about grace, mercy, and forgiveness lately.

    Last week I got a phone call disguised as my worst nightmare as the parent of a non verbal child with special needs.

    The voice on the other end used words…

    Adult protective services…
    Complaint of neglect…
    Investigating whether substantial…
    An incident on May 3…

    A person hired to care for Wesley failed to do so.

    The investigator came to the house forty-five minutes later. She told me she reviewed the video. For three minutes he was in danger. For three minutes he was ignored.

    The overseeing entity was apologetic. They were transparent. They showed me the video. I hoped it wasn’t as bad as I imagined. But it was.

    I cried. It was heart-wrenching to watch my child struggle. He tried to fix himself but didn’t have the strength. He looked scared. She was less than three feet away. For three minutes he was in danger. For three minutes he tried to get her attention. For three minutes she never even looked at him.

    Another employee not assigned to Wes is the one who saw. Three minutes could have been longer if not for her.

    As upset as I was, I felt compassion for the employee. I asked how she was. I knew she didn’t maliciously ignore Wes. On any other day three minutes might not have been as big of a deal. It was just on this day in those three minutes my son could have been seriously injured or worse. On this day the negligence of those three minutes put my son at serious peril and video captured it.

    The director told me the actions taken to ensure it wouldn’t happen to Wes or any other student. She apologized again. She thanked me for being understanding and forgiving. She said most people would not be.

    I was upset. I was livid. I told her this…

    “My faith is important to me. I am called to forgive. Nothing irreparable happened but even if it did, I have to forgive and show mercy and grace because I have been forgiven and I have been shown mercy. I have received grace even when I didn’t deserve it.”

    Having faith and professing to believe something is no more challenging than when it is inconvenient and when we have been wronged, whether intentional or otherwise. It is exactly then it matters the most.

    My actions deny my emotions. In that moment when anger holds the weight of me, I choose mercy and grace and in that moment I make my Father proud. My children see their mother put down the almost unbearable weight of anger which can only grow bitterness, resentment, and contempt. They bear witness to a mother who chooses to walk in freedom with Grace rather than be dragged by anger. I pray they will do the same.

    And so, without reservation or condition, I forgive this person. I wish her only the best. And when she has the opportunity to show someone else mercy and grace, I hope she does.

    Grace isn’t just for the person who, though unintentionally, wronged us. It is for me and I will gladly, joyfully, and gratefully walk in that the rest of my days.

    (more…)
  • Co-inhabitants

    Co-inhabitants

    Yesterday at Costco Wesley walked along pushing the cart. We began to pass a man who had what appeared to be a child, perhaps 6 or 7, sleeping in the cart when he suddenly stopped to engage Wesley. With a gigantic smile, he held out his fist to give him knuckles.

    “Hi buddy!” he said as if he knew Wes.

    Wes happily obliged in giving him knuckles.

    “How are you?” he said with his smile getting even bigger.

    He looked at me, “How old is he?”

    “He’s 21,” I told him.

    He pointed to his son in the cart. “He is 18!”

    I walked over to say hello. He wasn’t a young child. He was a child like ours. He had special needs.

    We stood there for a few minutes in the frozen section of Costco. People hurried by as we talked about our boys. It wasn’t about exchanging information. It was about being, even if briefly, with someone who lives in my world.

    Their life is as mine. Without being told, I know things about these strangers. I know this man or his wife has a hospital bag in his closet. There sits an already packed bag just in case that fever isn’t just a blip but the start of an extended hospital stay. Their arms are tired every single night from maneuvering their son. I know they hook up a feeding tube to give their child the basic sustenance to live. They try to balance time with the other children but some days they just can’t and it is no one’s fault though it feels as if it should be. They carry the weight of how their children are impacted. Though they will likely grow to be kinder and more compassionate adults, there is still a cost. I look at his beautiful wife whose smile is just as big and know he has a supportive spouse. Their friends try to understand but can’t possibly because they always only pass through.

    And I know they have cried over the simplest victory. They celebrate every smile and every laugh. Their life is amplified. They take nothing for granted and lay down each night and thank God for one more day with their son.

    Being the parent of a child with special needs is something like being a citizen in a foreign land. You appear to be like everyone else but your culture is different. The way your family eats is not like others. Though you speak the same language, yours includes words and acronyms the others don’t know. Your family can’t attend events unless they intentionally turn down the volume and the house lights are just half dark. Sensory friendly events are few and even fewer are churches to welcome the entire family. Days are filled with vital stats checks and diaper changes and medications. Some nights sleep is regular and others it consists of only two hours. There is no rhyme or reason. It is just how it is.

    Complete assimilation just isn’t possible even though you once lived with the same customs your friends luxuriously enjoy. As much as they don’t understand yours, you can no longer imagine life being any other way than how it has become. For it to be any different would mean the worst of nightmares.

    But then you see a couple and even though they are strangers, you recognize a familiarity that is not just welcomed. It is sought. They know the words you do. They don’t just sympathize. They empathize because they live there too. The only thing you may have in common with them is that but the weight and joy of that encompasses who you are. So you just stand there for a few moments. You feel your soul relax in a way it only can when you are with fellow inhabitants.

    For a fleeting few moments the abnormality of your life isn’t there. You soak in the seconds when abnormal is normal. And you smile and thank these strangers, these co-inhabitants, for stopping to give knuckles to Wesley and a smile to your heart.

  • Even for a 20 year old

    Even for a 20 year old

    Every morning I dress my 20 year old son. Wesley was born with significant special needs and is incapable of assisting with dressing himself. My morning starts with coaxing a sometimes cooperative but more often than not uncooperative man to the bed to change. I clean the wound for his g-tube and apply dressing. Next, I change his diaper and place an elastic band over the feeding tube to protect it from coming out either accidentally or being pulled out purposely by Wesley. I dress him in a spandex undershirt to further protect the g-tube. Finally, his second shirt is on and I pull his arms through the sleeves. He is strapped into his wheelchair, ready for the bus. By the time we finish Wesley is usually agitated and yelling. Every. Single. Morning.

    Most mornings it is just part of my routine. Some mornings, though, I must remind myself what a privilege it is. I bring to the forefront of my mind the multiple times I held him in hospital Pediatric Intensive Care Units unsure if he would live another moment.

    I recollect the first time I found myself in a hospital chapel.

    I grew up close to God and went to Catholic School. I clearly remember watching all the Easter specials on TV. I would grab some ice cream and watch with wonder the story of Jesus. I wished I lived then, that I could have followed Him. He was my hero.

    But then life happened. Or, rather, I chose different paths each leading me further and further away from that childhood hero. After I married my first husband we moved to a town in South Dakota. His job afforded us a level of prestige that was appealing. We ran full fledged into this world where we had dinner invitations with the Senators and the best seats at the symphony. As my love of this new world increased, my love for God all but disappeared.

    Then Wesley had his first major surgery in Minneapolis, four hours from our home. Everything went well until that evening. He spiked a little fever but they discharged him thinking it was dehydration and nothing to worry about. By the time we arrived home his temperature was over 105. Something was terribly wrong.

    A trip to the Emergency Room ended in the Pediatric Intensive Care Unit. He was hooked up to every device imaginable. His little body had no more room for all the probes and wires. Blood was drawn and almost every test came back abnormal. His liver functions were through the roof. Every specialist and subspecialist was called. Each one shrugged his shoulders and deferred to the next specialist until the final physician stopped at the door on his way out.

    “If you pray, I suggest you do,” he said as he left.

    Oh my heart. I had prayed only once in years. Not a single hello or thank you, just a single “can you do this for me?” And I was back with my hands held out asking for another favor. Would He even know my name?

    The elevator door shut slowly and I grew certain God would not know me or worse, would be angry because I only came to Him when I needed something. What once was one of the most important relationships in my life had, over time, eroded to my last resort.

    I sat in the little Chapel in silence for a few minutes. Dinner with the Senator didn’t matter. Where we sat in the symphony hall could not help me. The massive money my husband made would not save my son. Only God. And I had ignored Him for nearly a decade.

    Are you there, God? It’s me. Jocelynn. It’s been so long and I am so sorry for being away. I need you now. Please, God, let me keep my son. The doctors can’t heal him. They don’t even know what is wrong. But I know You can. Please, God. Please let me keep my son.

    I did not try to bargain. I had nothing to offer. I sobbed in desperation and embarrassment. How could I have been gone so long just to approach Him now to ask Him for something, the most important something I would ask? I hoped He would not hold my absence against me. My soul shook violently with fear, regret, and uncertainty.

    I walked quickly back up to Wesley’s room and crawled into his little crib and fell asleep.

    Nurses came and left through the night checking his vitals and taking blood. His morning nurse came in and woke me with a laugh.

    “I’ve never seen that before,” she said about me sleeping in his tiny crib.

    A few minutes later a team of doctors came in holding Wesley’s clipboard.

    “Good morning,” the lead doctor said. “His blood work taken last night is in. We have no explanation, but his liver functions have returned to a normal level.”

    “Is he going to be ok?” I asked crying.

    “We think so,” he replied.

    Over the years there would be more visits to Pediatric Intensive Care Units. There would be at least three times I would beg God to let me keep my son. All three times He answered yes. However I approached Him as a friend and not a stranger. At times my prayer to keep my son was followed by, “But if I can’t, please give me what I will need to endure.” And I knew He would.

    The prodigal daughter had returned.

    Changing my 20 year old’s diaper is not a burden. There is necessarily, a paradigm shift that occurs when the only thing one wants is for their child to live. Everything else fades into triviality. Changing his g-tube dressing and diapers every morning is exactly what I prayed for all those years ago in that lonely hospital chapel. I think of all the people I met in those rooms and friends along the way who prayed the same prayer and God said, “no.” I have heard muffled cries to soul wrenching screams from hospital rooms that no actor in any movie can replicate. It comes from a place deep within most of us never have to access. I wish I had the wisdom to know why some people’s children die. It seems horribly cruel. In some way, however slight, I try to honor them by realizing what an absolute privilege it is to change diapers. Even for a 20 year old.

  • My Mother’s Robe

    My Mother’s Robe

    When I was a child I could not, for the life of me, fall asleep on my own. I felt particularly fearful at night. It was the time when the distractions were gone and my mind had room to roam to all sorts of horrific scenarios like monsters under the bed or alien invasions or a world wide shortage of ice cream. 

    The only way I could get to sleep was for my mother to lie down next to me each and every night. Only then would I feel safe believing all the terrible things I imagined would not, could not happen. Her presence beside me assured my little heart everything was going to be just fine and I could finally rest.

    In the mid seventies she had a quintessential robe for the time, complete with flared arms. In order to ensure she not try to sneak away until I was fast asleep I would wrap my tiny hand in the flare leaving her no escape except a limp, sleeping hand. I did whatever I could within my little six year old power to make sure she was closest when I felt the most unsafe. 

    Nine years ago my first husband committed suicide. I found myself, once again, terrified of the night. Fear when not combated thrives in those moments of quiet. My mind roamed to all sorts of horrible scenerios like not being able to pay the mortgage, the impact this would have on my children, and the thought that perhaps I would never feel anything other than excruciating pain. It was always in those quiet moments of closed eyes when images of finding him replayed in repeat mode.

    Then I remembered my mother’s robe. Every night for months I fell asleep praying. I needed to know my Father was near and I did everything I could to ensure He not leave until I knew I was safe. I didn’t suppose God minded for He is a good Father. He knows my heart and would do anything to let me know I am not alone. 

    Then again last night it came… that moment when the hectic day was done and my thoughts had time to go to unsafe places. The world is terrifying right now. Coronavirus has disrupted our lives on a scale unseen during my life time. My children are all being home schooled including my son with autism. Our movement is extremely limited and even when we venture to the grocery store it is filled with diligence and anxiety that exhausts me. 

    The monster under the bed is invisible. It lingers in the air and attaches to door knobs and shopping carts. The information we are being provided changes daily as does the death count. It doesn’t discriminate and is vicious.

    The thought creeps in of my son with special needs catching COVID-19 and having to go the hospital alone. At 18 years old he is cognitively two. Isolated in a hospital room he would not understand what they are doing to him or why I am not there. The probability of him succumbing to Coronovairus is high given his underlying health conditions. These thoughts batter my core. I double me over until I am in the fetal position of my soul. 

    How I long for my kid fears, those thoughts that kept me up at night but had no way of actually occurring. For the thoughts that keep me up now can happen and will happen if I am not vigilant. They may happen even in spite of taking every precaution like going only to the grocery store as needed, keeping adequate social distance, and washing my hands frequently. If I have learned anything in this life it is there is only so much I can do to determine the outcome of situations beyond my own free will.

    Then I remembered my mother’s robe. I tangle my little hand around the hem of my Father’s garment and prayed as I fell asleep. His presence makes the fear manageable. There is power in that hem. There displays unshakable faith in the determination to get to His robe. The fear no longer takes my breath away. My soul unclenches.

    I remember those moments in my past of complete loss and devastation. What I now bring to prominence is the absolute certainty that beside and within me was and is the presence of my Father. He doesn’t always stop heart ache from passing through His hands. This world is not His Kingdom….yet. Even so, He is there in the midst to lull me to peace each and every night. May I never outgrow that.

    And for the moment in the dark and dreadful night, that is more than enough for me.

  • I trust You…

    I trust You…

    I was rearranging my seven year old’s room for what felt like the millionth time. He has a bunk bed that has a ladder on one side and a slide on the other. While he was sitting on the top bunk I took the slide down for a few moments. As I was trying to put the slide back on, his bed shook. I heard the sweetest voice say, “I’m scared, Mom…but I trust you.”

    How different would life be if, when on shaky ground, we sweetly said “I’m scared, Father…but I trust you.”

    During the summer of 2010 Wesley, my middle son with special needs, fell down the stairs and landed on the marble floor. I heard my stepdaughter calling me and knew something tragic occurred.

    I came flying down the stairs and saw him there. He was conscious but I noticed his hands and feet, contracted. I lived in the world of special needs long enough to know it meant brain injury.

    After an ambulance ride to UVA we were taken directly back. I remember just beginning to realize exactly how serious it was because we didn’t even have to wait in the ER.

    The nurse came in and I immediately recognized her. She had children at the same school as my oldest son. I was relieved to see her and know she would be praying as she cared for us.

    They took Wesley in for a CT and I sat in a metal folding chair in the sterile hall. I saw the tech speak to our nurse and from the other room I could read his lips.

    “There is a bleed.”

    My husband was a physician and I knew the gravity of what that meant. My child was going to live or die and there was little, if anything, that could be done by medicine to make him live.

    My prayer was simple.

    Please, God, please just give me whatever it is I will need to endure whatever is coming.

    That was the prayer of a mother who thought her child might die. The prayer of a mother who might never feel her child’s arms around her neck or see him smile again The prayer of a mother who wasn’t sure how she would live without her child. I had surrendered. I knew with all certainty Wesley’s life was in the hands of God everyday but it was never so obvious as at a moment like that. I knew that a loving, faithful God can still allow children to die.

    I am scared, Father…but I trust you.

    When the diagnosis comes…
    When your spouse has an affair…
    When the bank account can’t be stretched…
    When you lose someone you loved dearly…
    When divorce is impending…
    When the indictment is handed down…
    When your child is sick…
    When the layoff comes…
    When addiction is all you can see…
    When depression is crushing you…
    When anxiety steals your peace…
    When your heart is crushed…

    No matter when or what

    I am scared, Father…but I trust you

  • My Father’s Voice

    My Father’s Voice

    When I was a child and would ask my father the definition of a word he would never give me the answer. He would present me with another question.
    “What do you think it means?” he would ask me.
    I would reply “I don’t know. That is why I am asking.”
    His next statement was always the same, everytime. “I will use it in a sentence.” After doing so he would pause and after a moment he would ask again “What do you think it means?”
    I despised this routine. I just wanted him to tell me. I didn’t want to think. I didn’t want to have to figure it out. I just wanted the answers given to me. But I thought as a child. My father knew that I would learn the word better if I figured it out myself. He knew that he was training my brain to think. Though he could have given me the answer he gave me something even more valuable – the ability to find it myself.
    When I became a mother and my oldest child first asked me a meaning of a word without even thinking I looked at him and said “What do you think it means?” I heard my father’s voice as I spoke his truth. The awful, wonderful, frustrating tradition continued.
    When I find myself facing struggles and difficulties I will often ask God what does this mean? Just like my other father, He never just tells me the answer. He doesn’t say “My child, you are to learn to love well” or “I am training you to be strong for something else entirely that I know you will face” or “You need to show this person who drives you crazy who my Son is.”

    God sits silent and in that silence I hear Him say, “What do you think it means?”
    So often in life I am still very much like that child only now my father’s voice is my heavenly Father’s voice. I try to not ask him “why” something is happening. I learned long ago that the answer does not come and even if it did, how would that make any of it any better or the pain any less potent? Why was my child born with special needs? Why did my husband kill himself? Why must I raise my boys void of a father-figure?

    Somethings must be born from the struggle. I am convinced struggle is a different soil. When watered with tears and sweat it will bear fruit that would, simply, not come to fruition any other way.

    I zero in on the “What does this mean?” and “How will this define me?” and “How can this transform me?” questions.
    I suspect that God wants me to truly, earnestly, and vehemently learn the lessons that He will bring out of horrible, difficult, impossible situations. Romans 8:28 is a Bible verse we who follow know well.
    “And we know that for those who love God all things work together for good, for those who are called according to His purpose.”

    But we often stop at that verse perhaps because it fits neatly on a coffee mug or book mark. However, it is the next verse that, to me, solves the mystery of what I am supposed to learn and exactly why and how God works all things for good…
    29 For those whom He foreknew He also predestined to be conformed to the image of His Son, in order that he might be the firstborn among many brothers.

    To be conformed to the image of His Son…

    He doesn’t work all things for good so that we can have nicer cars or promotions or Facebook perfect lives. The answer to the “what does this mean” question is never something my flesh would crave but something my spirit desperately needs. It is so that I will be more like Jesus. The kicker is, I have to let Him. I have to be willing to zero in on things of eternal import.

    Why was my child born with special needs? I do not know. What have I learned from it? Patience, resolve, kindness, perseverance, how to choose joy, unconditional love, and the list goes on. Why did the heartache of my husband’s death pass through God’s hands and why did He allow it to happen? I do not know that either. What have I learned from it? God is faithful. He is close to the broken hearted. He is the defender of the widow. His promises are true. He restores what was lost, perhaps not in the way we expect or desire, but we are blessed by the restoration. That list goes on as well.

    I believe that God sits in silence sometimes even when I am the child demanding answers precisely because the answer must be attained so that I can learn it on a soul level. It must be ingrained into who I am so that it is natural for me to take what I have learned and utilize it with confidence because it is mine. I have ownership. I can use it to help others and I can allow God to use it to transform me ever so gradually into the image of His beloved Son. As Christians, that is the ultimate goal after all…to hear our Father’s voice and be transformed, glory to glory.

  • Embracing Our Brokenness

    Embracing Our Brokenness

    I recently had the honor of sharing my testimony with the Ministry for Women at my church. The audio is below.

    I’m sharing mostly because friends had asked to hear but, honestly, I can’t figure out how to share it with anyone who does not have gmail.

    At any rate, this is part of my story.  I hope it blesses His heart

  • Two Roads

    My life often feels like this picture. I travel the rough road on the right while almost everyone I know travels the left. My road is bumpy and at times treacherous. There are places where there are no lines and days I don’t even know if I am on the correct side. Potholes appear suddenly and I swerve to miss them. It’s very constitution changes beneath me with no signs of warning. My road is worn from time and use.

    I watch as cars zoom by on the other side. From where I am, I am sure they can turn on cruise control. Their road is so well defined they can almost not think about the direction in which to go. I envy them as I watch. All the children have the ideal number of chromosomes. They do not have to stop often for doctor appointments or IEPs or meltdowns. They can stop anywhere to eat or use the restroom. Everyone just hops out of the car. We have to wait until there is a place with food easily pureed or family restrooms. We have a wheelchair and diapers for a 16 year old and a feeding tube. Life seems easy for them and I envy the simplicity.

    My road has many diversions. There are stops that take time and we can’t get anywhere fast. Mandatory hospital stays and surgeries keep us stranded, sometimes for days. There is nothing smooth about the road we travel.

    But it is our road and the only way we can travel on the other side is with the absence of one of our passengers and no one wishes that. So I learn to live as a vigilant driver. I adjust accordingly. I expect the unexpected. My children grow increasingly patient and empathic. They learn to lean when I swerve. They take care of one another in a way I doubt they would had we traveled the other road. There is no way to know for certain, but I suspect they are and will be different people for their journey.

    The grass is just as green on our side. We travel under the same sky, the same stars, the same moon. We see the same sun and God shines on both roads. We have wild flowers, rolling hills, and lush meadows. The scenery is as beautiful. In the slowness of our pace I can take in more of it. I can breathe deeply and almost smell the morning dew. It is during the stops that seem so long when I notice the clouds and the sun. It is those moments that give us a chance to dance even when there is no music.

    See, my road still goes somewhere. Although it is different and challenging I am grateful to be on it. It is, for the most part, exhausting. Cruise control is not an option. Even so, I know full well there are families who wish they could be on my road. For they once were but at one of the stops they had to leave their special passenger and pieces of their own hearts. I know they would give anything to deal with potholes and wheelchairs and doctor appointments. I know they miss this road and I realize it is an honor to be exactly where I am.

    I can spend my time begrudgingly traveling, indignant and angry for the road on which I traverse. Or I can drive with gratitude and joy but I must drive.

    I must travel.

    How I do is entirely up to me.

  • Even Loveable

    Even Loveable

    I never once imagined what types of challenges a family with a child with special needs faces until I had one. I never even considered their lives as perhaps different from my own until October 26, 2001 when my middle son, Wesley, was handed to me in the delivery room.

    Since his birth his diagnosis has changed. New ones were added and some changed entirely. When he was ten years old the diagnosis of Autism was added to his resume. It did not come as surprise like the other diagnoses. This one was entirely expected.

    When I speak about the world of autism to friends with typical children more often than not I receive one of three reactions. Sometimes their eyes glaze over and I can tell I am not speaking the language they know. Other times I am greeted with looks of pity and I am certain they do not understand. Yet other times they look at me as if seeking to understand but always as if looking through a window. They could not know my life in any other way other than peering into it but never stepping into the room.

    The world of autism is a colorful, bright, confusing world. It often does not make sense to me but it doesn’t have to. It is seeing the world through the eyes of my son whose brain does not process information like mine. Sometimes it is a beautiful opportunity and other times it is heart breaking.

    The world of autism is challenging. It is living in chaos while maintaining strict regimens. Deviations from the schedule can be catastrophic. Autism is violent and melt downs occur at any place and anytime. It is stubborn and unyielding at times.

    The world of autism is beautiful. It is a place of unconditional love. A place where it doesn’t matter what you did or who you are. You are a beloved friend. Autism is loving others with reckless abandon. It is laughter over the silliest things and sometimes over nothing at all.

    The world of autism is tiresome. It is constant exhaustion and being at a heightened stage of alertness at all times. It is trying to be one step ahead, attempting to predict the behavior of an unpredictable child. I am rarely rested or relaxed.

    The world of autism is celebratory. It does not matter the size of the accomplishment but that progress occurred. We celebrate everything. Wesley put his cup on the table instead of throwing it across the room – celebrate! He put three signs together – celebrate! He got out of the car in under twenty minutes – celebrate! Autism does not allow anything to be taken for granted.

    The world of autism is hilarious. I have developed a sense of humor to get me through. When the school emailed me to tell me Wesley was taking off his shoes and throwing them at people I couldn’t help but laugh and have a slight sense of pride. After all, he had put two skills together. He took his shoes off AND then threw them! Each one had taken years of physical therapy to accomplish. In the world of autism I laugh far more than I cry.

    The world of autism is triumphant. It is reaching in and finding more energy, more patience, more wisdom, more knowledge, more everything in order to be the parent my child needs me to be. It is the fire which refines me into a better mother, daughter, and friend. I am a better human being because I know autism.

    The world of autism is a blessed place. It is an impossible place on some days. It is an eclectic place every day. It is an amplified existence where the highs are higher but the lows are lower. It is not ordinary. It is our world. We can love it or we can hate it but we must live in it.

    I am now not who I was on October 26, 2001. Not only did my life change the next day, my entire world did. I went from one reality to another in the amount of time it took for my then husband to say, “the geneticist will come tomorrow.” I did not have time to pack my bags and plan a trip. I had no opportunity to brace for impact. I found myself in a strange land with a different language and I learned as I went along. However, now I am stronger. I am wiser. I am unconquerable because my son has shown me how to be. I learned to be a warrior by watching him work for every milestone and from the other mothers who showed me their beautiful scars.

    Our child does not “suffer from autism.” He has brown hair and green eyes. He has autism. It is part of who he is. He knows no other way to be. He does not look at his siblings longing to be like them. He knows what most of society still needs to learn – he is perfectly whole in spirit. I do believe he is more complete than I am. He is the most entire soul I know and it is an privilege to be his mother. It is my highest honor.

    When I first met Autism it was as an adversary to be feared but became a constant companion. It is understandable. It is acceptable. It is even lovable.