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
I pulled up to the massive school. The outside was pristine and beautiful but I could not tell where the entrance was to the theater. As I drove around the building for the second time I noticed a maintenance man wrestling with a ladder so I rolled down my window.
“Excuse me, I’m trying to find the main entrance,” I said.
He looked confused.
“My son is performing today. Where is the theatre in this school?”
He looked at me and then glanced around the school.
“Ya know, I’ve been here ten years and I have no idea. I always work on the outside. We never go inside,” he said almost apologetically.
I drove away and around the building another time when I finally noticed the camp counselors trying to direct parents but the man’s words stayed with me.
For ten years he only worked on the outside of the building. He never went inside.
I arrived early and those who know me will attest that is not unusual. I found the restroom and was surprised to see the state of the inside of the school. The pipes were rusty and paint was peeling. It did not at all match the near perfect outside.
When the outside is glorious an expectation that the inside is equally marvelous is created. Inevitably, disappointment creeps in as you begin to see that the inside does not match the outside, not even close.
I believe there is a pervasive notion in the Christian world that our outside needs to appear perfect. For, if we love Jesus we must have it “all together.” We can spend an entire decade caring for the outside without ever stepping inside. We aren’t sure what rooms are even in our hearts. We never peer in ourselves, let alone allow others the opportunity to see the messiest of our rooms.
In a complete moment of honesty, I would say most of us have mismatched exteriors and interiors. I know I do. Like the maintenance man I met, so much attention and detail is given to what others can see and I push things under the bed and into dusty corners. Eventually, though, someone will either be invited in or, perhaps, wander.
He will ask about a room in my heart and I’ve spent so much time neglecting it, I’m not even sure where it is or how to get there. Unlike other guests, He knows exactly where the rooms are and what is in them.
“It is this way,” He says, “let’s clean it up.”
He opens the door and I can’t see anything but clutter. I see broken pieces everywhere.
“It is too messy,” I tell Him.
He picks up a piece.
“We can do this, one piece at a time,” He reassures me.
Gradually because of His patience and my perseverance, the room is livable.
He leads me to the next room and opens the door.
“I don’t want to clean this one,” I tell Him trying to shut the door. “This is where I keep my secrets.”
“We must. Do you not see how much they have grown? They only gain in power in this darkness. They will bust out the windows and the doors. They will overtake the entire house. We must make room for what I want to put here but it is a big job. You will need help for this one, someone to come along side you. Someone who will check on the progress and help keep you on task. Let’s bring in a friend who will stay with you,” He tells me lovingly as He throws open the shades.
We have been working so much on the inside that the outside is starting to look worn. I ask Him if we can work on the outside, the part people see.
“It is all right,” He tells me. “We are making them match.”
It is a long, painstaking process. Room by room He opens the doors and shows me what needs to be done. Sometimes I am obedient. Other times I fight Him. Eventually, I surrender.
Some rooms stay neat and orderly. Others require constant dusting and arranging. He shows me each time what needs to be done.
The outside becomes more worn as the inside becomes more inviting. My exterior begins to match my interior. I open the doors, unashamed of the outer appearance and the interior’s condition. It is ready for guests to enter. It is ready for others to see. I am ready to share how, by the Grace of God and love of Christ, my house is restored. I share with them what it looked like before so they can know how it came to look as it does. I tell them I might need assistance keeping the rooms tidy. I ask for help. I offer to help with theirs.
Like every house, though, constant maintenance is required. Now, however, I don’t leave the maintenance man outside. I invite Him in. Each and every day.
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.
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.
As Easter approaches I have been thinking about the Cross. To the Romans, at that time, it was a means to inflict the most shame and send a resounding message of defeat. They had several methods of capital punishment but reserved crucifixion to leave a lingering message to their enemies. It was the most painful and disgraceful punishment in an arsenal that included strangulation, stoning, and burning.
Yet the lingering message the crucifixion of Jesus was not what the Romans intended. As Christians we do not see shame, defeat, or disgrace when we look at a Cross, the symbol of our faith. We see redemption and resurrection. We see victory. We see love so great that even death could not consume it.
Growing up in the Christian world I have heard, “we all have our cross to bear” countless times. In Luke 9:23 Jesus says “And He said to all, If anyone would come after me, let him deny himself and take up his cross daily and follow me.”
However, “we all have our cross to bear” was almost always said to me with a negative connotation. We use it when discussing hardship or challenge. The image it would immediately bring to my mind is Jesus carrying His cross up that hill to die.
But what if that is the wrong image of the cross I bear? Am I thinking of the Roman cross or Jesus’ Cross? Upon the Roman cross is nailed a punishment but upon my Jesus’ cross there is an invitation, the sweetest of proposals. What man meant for torture and shame only by the power of God was transformed to give life and promises both for now and eternity. What was meant to kill a movement changed the entire world and every heart for those who truly believe.
My thoughts about the cross of Jesus turn to my own personal cross. What is that one thing that was meant to, or could have, destroyed me but by the power and Grace of a loving God became my triumph?
I live in a complicated, beautiful world of special needs and autism. I can’t recall the specific moment I went from being a timid, frightened mother to a banner waving, “wohoo special needs is awesome” kind of mom. It was a natural progression and at some indescribable moment the cross I carried was transformed from a death sentence to a life promise. I discovered that the cross I bear doesn’t have to be the one society gave me but must be the one God intended for me.
My mind and my heart made the decision that my cross would represent life and love and power. My faith allowed God the opportunity to give me the ability to accomplish this. Special needs could have destroyed who I was instead of transforming me into who I was meant to be.
Make no mistake, it is a difficult world in which we who love someone with special needs live. We often feel isolated and different because we are. Other mother’s of teenagers are busy going to basketball games or track meets. I am going to every sensory friendly event offered and doctor appointments with every specialist. I am often exhausted. Everything others take for granted can be and often is an overwhelming challenge to my family.
It is not easy. It is impossible to not be changed by living in the world of special needs. It is possible to decide what sort of change will take place.
The world in which we live is colorful. It is filled with hugs and joy. It isn’t about the fact that my son cannot speak, it is about the fact that he speaks with no words. Everything others take for granted can be and often is an overwhelming victory for my family. It is life amplified. The lows are heartbreaking but the highs are found in heights I could only appreciate by having a child like mine.
I do not choose whether or not I will bear a cross, I choose what my cross looks like and how I carry it. I decide whether or not it will represent shame and disgrace or the glorious promise that God works all things for good. I alone can cast my eyes down in despair or raise my chin and hold my head high.
What is the cross you must bear? Is it abandonment? Your addiction? The death of a loved one? A medical diagnosis? Mental health struggles? Guilt? Will it be a cross of shame that you hang upon despondent and alone? Or will it be a cross of promise for all to see and perhaps extract hope for themselves?
The important part to remember is the cross you bear doesn’t have to be a cross of disgrace just because society deems it so. It can become the cross of redemption, resurrection, and victory because God deems it so. He deemed it on Calvery and He deems it in your situation.
It is entirely up to you to choose which cross you will carry. The rest is up to God and He never fails.
I bought Nathan, my five-year-old, a workbook to reinforce his pre-k lessons regarding learning letters. One of the exercises required him to circle all the letter k’s from letters randomly thrown across the page. Once that was complete he was to connect the circles to reveal the picture. He had a role to play and had to put effort into the exercise.
I watched as my son examined the letters with the tenacity of a scientist. He carefully circled each k he could find. I gazed down at the page and could easily see what the picture would be . From an adult’s mind there was no great mystery to be revealed but to a child it was entirely unknown.
Halfway through circling the k’s he looked up at me with his gigantic blue eyes.
“What is it going to be, Mommy?” he asked.
“Keep working baby,” I told him. “You will see”.
He could not decipher the image as it slowly unfolded. I could have just told him, “Oh it’s a kitten with a kite” and ruined the surprise for him. I could have given him the information and all his hard work would have been for nothing. Giving him the answer would not have helped him learn the lesson brought before him. Instead, I waited patiently as he continued seeking.
A few moments later he looked at me and said “Mommy I want to circle some of the n’s for Nathan” as he circled one.
I gently remind him that was not the task at hand. If he circled the n’s he would not see the picture that was intended. I helped him refocus on what he was supposed to do but I did not condemn him. I did not yell at him for becoming distracted. I gently nudged him back to where he was supposed to be. It was entirely up to him to listen or not.
“But I circled one,” he told me with discouragement.
“It’s ok, we can erase it and pretend like it never happened,” I said taking the pencil from him to rid his mistake.
“Thank you,” he replied sweetly as I kissed him on the head.
Once he finished his eyes lit up with utter joy and excitement.
“It is a kitten flying a kite!” he screamed.
At that moment I limited myself to join him on his level and said with equal excitement and surprise, “It is! Well done!”
I was not condescending even though I knew all along what the picture would reveal. I genuinely was thrilled. I applauded the effort and relished his sense of accomplishment.
How often is this the scene from my life? I know what I am supposed to be doing. I am searching for my k’s so that I might connect the dots and see the mystery unfold before me. Some days I can be tenacious and other days I am rather lazy. Some days all of the k’s stand out and I can clearly see the direction to take. Yet other days life is such a jumbled mess I cannot see with clarity. I have times when trying to put order to the chaos is overwhelming and I am sure it will never be more than a complete mess.
Even so, God is standing over me. He is encouraging me to keep on trying. He knows what the picture will be. Not only can He already see it, He created it. He knows that upon completion I will be ecstatic with what has been given to me. He lowers Himself as any good parent would and is just as excited as I am when the final picture is revealed. He may even exclaim, “Well done!”
But I get distracted. I want to wander from what I am meant to do to what I want to do. My focus is diverted to something that does not contribute to the beautiful picture being created for me. I misstep. It is corrected, blotted out by a loving and gracious parent. He tells me, “It is ok. We can pretend as if that never happened. I erased it for you already.”
He gently nudges me to continue. He tells me that though it doesn’t make sense right now, with each next step the picture will become a little clearer.
I persist. The more k’s I circle the fewer letters there are to sort through. It becomes easier and easier for me to find another one and then another. I just do the next right thing.
I rejoice in the accomplishment when the picture is complete. I can finally see how my hard work with God’s guidance and Grace has created for me beauty from chaos. I thank Him for His love and encouragement. He kisses me on the head. With the eagerness of a child I say, “May I have another one?” and He happily hands me a new page.
I had a good cry this morning. And this afternoon. And this evening. I am facing the reality that in two months my oldest son, Emerson, will graduate from high school. He will finally spread his wings and in August will fly straight to NYC.
Today I found myself wishing I could be more like eagles. When their young are ready to leave the nest the mother eagles will “stir up the nest” and make it uncomfortable for the babies to stay where they are. She will change the composition of the home from a safe, comfortable nest by scratching the soft layer away leaving only rocks and twigs exposed. The discomfort for the babies to stay where they are becomes greater than the fear of flying where they need to be. Something in the mother’s DNA knows when it is time for them to leave. She knows that only by testing their wings will they actually soar. It is instinctual for her to let them go for she knows the strength of those wings will allow her babies to fly even above the storm. They will know not to try to fly through it. They rise above.
There is absolutely nothing instinctual to me about having my child leave home. It goes against every way in which I have been created. Yet this mother’s heart knows Emerson is more than ready. I, however, am not. When he was little I knew that my time with him was fleeting. I savored every moment as if in doing so it would slow down time. It didn’t.
Wasn’t it only yesterday I rocked him to sleep in my arms while singing “someday we’ll find it, the rainbow connection…”? Surely it was last week he was pushing his little cart through the grocery store. He was my shadow and followed me everywhere, even to the bathroom. Wasn’t it only last month he would proudly collect dandelions from the yard and present me with the most beautiful bouquet ever?
He and I have weathered ferocious storms together. He stayed with me and hospitals several times while his brother laid in the Pediatric Intensive Care Unit. When his father died a little boy tried to become the man of the house. His self-imposed burden to do so and to be the child with no needs was and is exhausting and I am happy his load will be lightened. I am joyful in knowing that he will begin to become who he was meant to be absent of the every day trials our family faces. Only the pursuit of his dreams awaits my sweet son and this brings me solace even in the midst of grieving.
Unlike his father’s death, though, I see this loss coming. This time I see the mountain in the distance and don’t find myself suddenly at it’s base. We are heading there slowly and steadily and part of me wishes I could just hit the brakes and keep him little forever.
The hardest part of motherhood is not the runny noses and fevers. It is not the temper tantrums and eye rolls. It isn’t the sleepless nights, exhaustion, or endless “to do” lists.
It is in the letting go.
The process of breaking off a piece of my own heart so that my son may be whole is the biggest, most difficult challenge I have faced as a mother. It is necessary and I knew the end goal when I signed up for motherhood. Yet I did not think it would come so soon or so painfully.
Preparing for my son to leave the nest is somewhat like a death. As Christians we believe when our loved ones die they go not just to a better place, they are in Paradise. The sadness we feel, the grief, is for what we miss and for what we lost. We don’t grieve where they are, we grieve that we were left behind. Emerson will be exactly where he belongs. He will discover who he is and begin his quest toward his greatness, whatever that looks like. He will meet new friends and his mind will expand further than he ever imagined. But I will be in the same house and it will be quieter. I will no longer attend functions at the upper school and see the moms I have grown to love over the last 13 years. I will not tap on his door just to say “I love you.” I will not sit at the kitchen table every night dunking cookies in milk and solving the world’s problems with him. Surely, a piece of my heart will be gone.
Parenthood, when done well, is about sacrificial love. It is consistently putting our needs aside and attending to our children. I have eighteen years of learning and growing in sacrificial love. This, however, is the greatest and most painful sacrifice. It is accompanied by excitement in the promises yet to unfold for him but some days those just aren’t enough to keep grief at bay. Days like today it simply hurts. Days like today I feel the breaking of my own heart. Days like today I hate time for going so fast and my powerlessness to stop it. Days like today I can only mourn the letting go.
I wait for the Lord, my soul does wait, and in His word do I hope. Psalm 130:5
My middle son, Wesley, has a favorite game that I play with him. Though he is sixteen years old deletions on his first chromosome have left him cognitively a three-year old. In our game Wesley lays down and I am next to him. I will smile and say “Oh, my, where should I…..” I pause for a few moments as Wesley squeals and giggles with absolute delight. He knows that after the exaggerated pause I will either kiss him, tickle him, or boop him on the nose. For him the fun of the game lies in the anticipation with the expectation that something marvelous is about to happen.
His entire body will twitch with excitement. His laugh comes from the depth of his soul. He is not anxious or worried about what is to come. Even with his severe cognitive impairment he knows that he is dearly loved. He knows that I am his mother and only have good things planned for him. He waits to see what is going to happen with joyful expectation.
When I grow weary from waiting for God I think of this game with Wesley. In my scenario I am the child waiting with joyful expectation as God is right next to me. Even with my limited, human capabilities I know He is good and that He loves me. I am assured that when something is to come from Him it will be more than I could have ever asked or imagined. Every single time.
Often in my life I have found myself waiting. When I rush ahead of what God is trying to do I ruin the surprise of what He had in mind. Moreover, my plans are never as great as His. If I am being wise waiting for Him is not an option, it is compulsory. How I wait, however, is my choice.
I can wait with joyful expectation. I can rest in the knowledge that doors are opening and closing as His plan unfolds. Perhaps hearts are softening, even my own. Conversely, I can wait with anxiety and dread but there would be no purpose in that. It would only cause me to be in a place I do not need to be.
For we have the blessed assurance that God will deliver something loving, something kind, something we long for, something that tells us we are His and we are loved. Forthcoming is something magnificent like a kiss, a hug, or a boop on the nose from a beloved parent.
We were without power for almost 24 hours before it went back on this morning. High winds left trees toppled. My children’s trampoline flew to the other side of my almost 2 acre yard.
No power leaves everyone unsettled. It is easy to forget how much we depend on it until it is no longer available. There is no person in my home more inconvenienced than my five year old son, Nathan.
In the middle of our blackout last night Nathan asked if we could pray for the power to go back on. He folded his little hands, bowed his head and said “Dear God, please give us electricity back. Amen.” As soon as he finished, the lights flickered on and off a few times. The electricity didn’t stay on but it was as if God replied, “Sweet boy, I hear you.”
God gives us these moments when He does reply just to let us know He is present. Sometimes we miss them because we are so busy or our intellect chalks it up to coincidence. We can’t imagine a God in charge of the universe would care whether or not we have power. But He does. We become jaded because of all the other times the answer was “no” or “not now.” But sometimes the answer is just a glimpse or a reminder that while He hears us the final answer will have to wait.
My sweet son doesn’t have those blockades in His relationship with God. He believes with his entire sweet, innocent heart that he has a direct line to God. The beautiful part is that he does. The beautiful part is that I do too. And so do you.
I just need to have faith like a child. I have to suspend all that this world has done to me and distill faith down to its purest element – that God loves me entirely as if I am His favorite child. I love my children all uniquely and each of them with my whole heart. Every one of them is my favorite child.
It takes effort to be like a child because so much has happened to me from when my heart was soft until now. I have to be careful to not blame God for the things a broken world did. I have to think with my heart and in every other relationship that is unwise except for mine with Him.
Imagine what power lies within us if we can attain faith like a child but have the wisdom gained through years of experience.
Nathan’s prayer last night, I believe, went straight to the ear of a loving, kind, and gentle God. See, the power was not in the electricity. It was in a little boy with the faith of a child.
I can honestly say that I would not love my middle son, Wesley, more if he had a complete set of chromosomes. He would not be more my child if he did not have a diagnosis of autism. He is my joy and it is a privilege to be his mother.
Once in a while, though, my mind wanders to wonder what life would be like if he did not have multiple diagnoses. What would it be like if he did not have a different doctor appointment every few months? What if he didn’t need to go to a special school? What if he didn’t have a feeding tube? What if he could speak with words? What if he didn’t have melt downs and hurt himself? What if he was born typical?
I took this picture just before Disney Live began. I think it is a safe assumption that he was the only sixteen year old in the place screaming at the top of his lungs every time Mickey Mouse came on stage. Every. Single. Time. His joyful noise comes from the depths of his soul and it is magnificent. This photo reminds me that love is felt and not spoken. Love is shown and received in the little and sometimes silent places in daily life. Yet, it also brings my mind to a place in a parallel universe where, perhaps, special needs is not part of my family’s constitution.
He almost looks like an average teen ager in this picture. I see the slightest glimpse of how he would look if he did not have special needs. Had he been born differently, Wesley would be in tenth grade. He would have his drivers permit. He would be wrestling with math and how to talk to girls. He would roll his eyes at me and think I am very old.
I wouldn’t have to change his diaper or tube feed him. He wouldn’t need a wheelchair to be pushed long distances or to get on the school bus every morning. He would not need several medications twice a day. There would likely be no IEP or SLP, OT, and PT. He would not listen to the same Andy Grammar song over and over and over for years and years and years and no other music. Instead of Blues Clues he would be watching action movies or science fiction. He would play video games. He would hang out with his buddies. He might even play a sport or musical instrument.
But that is not where I live. From time to time my imagination visits there but it does no good to sit in that place for long. Instead, I try to make it better where I am. I refocus on the fact that he is precisely who he is supposed to be. I see all he does instead of that which he cannot do. I see abundant, unconditional love. I see God in my beautiful son.
My ability to alter my focus to not dwell upon things unchangeable began in the United States Air Force. My father joined before I was born and for much of my childhood it was all I knew. It is a challenging way to grow up. We moved every three years. Friendships were fleeting and my father was gone a lot. I was the constant “new girl.” Before I graduated high school I had been to six different schools. By military standards, however, that wasn’t so bad.
Often we would arrive at the new base a few days before our furniture. My parents would make it a game and we would pretend we were camping. With only sleeping bags and pillows we would all gather in the living room. There was no television or radio – just my parents, my brother, and me. It is one of my fondest childhood memories. It birthed in me the ability to turn an inconvenient situation in to a glorious adventure.
This notion became part of who I am. In college it hung in a frame by my door:
Growing up a Military Brat I learned respect, duty, and honor. I understood at a very young age that complete strangers are willing to leave their families and, perhaps, die to protect others. I learned it before I could even hold my own head up as my father was shipped to Vietnam and missed the first year of my life. But I also learned resiliency and efficiency. I could blend in to my new environment quickly, including adopting the local accent. Much of my survival in school was based upon that ability.
Part of that survival was also figuring out how to find and focus on all the reasons being where I ended up was actually better. Even the smallest blessings could sway my attitude toward our latest station. I can so clearly remember learning to like a new place simply because the swings were a little higher than the last base. I couldn’t change the place in which I found myself but what I could change was my perception of it.
The lesson of making a place better was one I carried with me into my adulthood. It became the mantra and saved my mental well-being when I found myself in situations beyond my control. Like the child growing up on bases across the country, I have throughout my life been thrust into situations beyond my doing or control. My life has taken paths through the worlds of special needs, addiction, and suicide. Not one of those destinations had anything to do with my behavior nor were they consequences of my actions. They simply happened to me. It is a life I did not choose but, rather, was chosen for me.
As a child and even now I could spend my time wishing I was at the place I left behind but it wouldn’t change where I ended up. I would simply miss out on all the wonderful things about my new adventure.
I discovered this writing by Emily Kingsley soon after Wesley was first born. Everyone’s journey is unique but this was true to my heart.
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!” you say. “What do you mean, Holland?” I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
How many times in my life have I landed in unknown territory? How often has life taken me on a detour to a place I never imagined nor wanted to go?
I inhale. I exhale. I grieve. I cry. I mourn. I pray. I stand back up. I learn the new language. I discover who I am in the present situation. I look for whatever is lovely and noble and true even in the midst of seeming hopelessness. I seek out the positive no matter how hidden. I am relentless in my pursuit to make it better because I am there.