One of your favorite people stopped by today, sweet boy. She is one of mine as well. Walking into the house with a smile, determination, and a bag hanging off her shoulder she said,
“I have some things. I want to pray over you. Is that ok?”
We sat on the couch as she pulled frankincense and myrrh anointing prayer oil out of her bag.
“Can I have your hands?” she asked offering hers as well.
Using the anointing prayer oil she poured them on my:
HANDS
“Father Abba, these are a mother’s hands. These hands have cared for Wesley. They fed him, held his hands, carried him, picked him up when he fell. They have cradled him to sleep and wiped his brow. These are a mother’s loving hands. They have catheterized him, washed him, and cared for his wounds. Though they feel empty, we know you can fill them. I pray you would heal them and give them new purpose when it is time.”
FEET
“These are a mother’s feet. They have chased Wesley around the house. They have pushed his wheelchair through stores and malls and Time Square so he would enjoy life. They have walked around the home in the care of him. They have paced hospital rooms. These feet have walked in your purpose and have followed you. I pray you would give them rest. I pray you would rejuvenate them. May they follow your new path and new purpose in Your time.”
MIND
“This is a mother’s mind. She has worried about her children. She has thought about their well being and solved their problems. She planned Wesley’s days. She advocated and spoke to doctors. This mother’s mind made hard decisions. She learned so much to become licensed to care for Wesley. I pray you would help her to use that knowledge to help others when it is time. I pray lord you would give her peace and healing. Please be close when she is anxious. I pray, in time, you would give her new thoughts of hope and tomorrows. May the memories here become more joyful than painful.
HEART
“This is a mother’s heart. In here her children have lived and forever will. Wesley filled her heart and though he is ok her heart is not. There is an emptiness, God, that only You can fill. This mother’s heart is broken but You hold the pieces. You hold her. She has loved them unconditionally and abundantly. Her heart is hurting now and I pray you would sit with her. I pray you would comfort her and fill her heart with Your love. Give her peace.”
I sobbed the entire time, sweet boy. Crying is my normal these days, but these tears felt different. They were cleansing. They were heavy with grief yet light with praise and had an ever so slight tinge of hope and peace.
My hands are empty. My feet long to be tired. My heart is destroyed. My mind is foggy. For now. We have been talking in our home, sweet boy, about adding “for now” to the end of our sentences. We desperately need hope it is only this twistedly wrenching for now.
Granular relief during global grief.
Our friend gave us a beautiful gesture and powerful prayer of deep love. For over twenty years she has celebrated our family’s victories and reached into the pit especially when your dad died and when Grandpa died. She came to the hospital to pray with us at midnight when you first began crashing. Sweet boy, whenever you heard her voice even from the other room you would crawl out to see her. You loved her because you recognized God’s love incarnate. Like recognizes like.
A friend loves at all times, and a brother is born for a time of adversity
Five weeks ago today, sweet boy, I left the hospital without you. When Steve and I arrived home Grandma was standing in the kitchen. She saw me slowly walk up the steps hugging your pillow. I didn’t need to say a word. She knew I would never leave you in the hospital alone.
Your brothers were awakened by Grandma wailing. I went to tell them but they already knew. It was the worst day of all our lives. I will unpack it and the medical trauma another day.
For the last five weeks, I have spent most of my time on the couch. I have been accosted by grief before when your dad died and my dad died. There is no comparison, sweet boy, to the depth of grief over you.
At first, it came in relentless high, powerful, uncontrollable attacks constantly pummeling me. I could not catch a breath between blows, nor silence the screaming anguish from my soul. Just in the last couple of days I have been able to control it ever so slightly. Sometimes I try to wait until no one is around and release the tears. Our family is so worried and feels so helpless. I see the loving desperation their eyes that perhaps today I will feel a little better. Sometimes, though, the tears come anyway. I find grief is intrusive.
Five weeks. Five years. Five lifetimes.
Time is strange when grieving.
One thing I have learned is grief isn’t a journey. There is no destination, no end point where I hang a flag and exclaim, “I made it!” I have heard it explained as learning a new language. That doesn’t fit for me either because not everyone speaks it nor understands.
It is displacement. It is a house you’ve lived in for a very long time. There is happiness and it is beautifully harmonious and you love it there. Everything is in place and so much love abounds. On a seemingly beautiful day a hurricane hits. The home is destroyed and all you have left are pieces as you sift through the rubble. Some things have been destroyed and others are missing entirely for good. You have no tools to rebuild. Even after the hurricane things continue to fall. Family and friends try to help but you are surrounded by what is left and the shards prevent anyone from truly getting to where you are.
So you cry uncontrollably.
Your heart bleeds and your hands are useless.
Nothing makes sense.
All seems lost.
Grief is sitting there in the after. It is seeing what once was and knowing part of the foundation is no more. It is trying to fathom rebuilding a house without the essence of it. It is realizing you don’t have the strength to exist let alone rebuild. Grief is crying out to an all powerful God who doesn’t wave a magic wand and make it better but He will sit there with you and you are grateful because He is the only One who can.
Five weeks after your death, sweet boy, I am prone in the rubble. The elements are harsh and I am exposed. There is a strange apathy that accompanies grief and it doesn’t seem to bother me. It is early yet. Nothing can hurt more than losing you.
There is a part for me that will come before the rebuilding. Perhaps that is where I will gather tools, supplies, and strength. I am not sure – but choose to wait with joyful expectation. God will not leave me here in the aftermath. He has promised to lift me out of the pit of despair. He will set my feet upon a rock and steady me. He just hasn’t yet. I wait for Him.
When the time comes, we will rebuild the house with no blueprint. It will seem impossible and it will feel like a violating betrayal. Tear by tear and brick by brick something else entirely will exist. Somehow, we will make a new home but there will always be space where you would have been. We will always have empty rooms in our new home and forever adjust to the place that belonged to you. They tell me we will learn to live there.
Five weeks in the after it feels the eventual rebuilding will come with a reluctant acceptance. Acceptance must come. I have to learn to live in the place grief has assigned me. But she will not rule me. There will be an eventual moving forward without leaving you behind, sweet boy. I carry you with me always and there will be a place for you no matter what house I build.
You were medically fragile but the strongest person I knew.
Your death was shocking but anticipated.
You are my son but you are not here.
I have been looking for answers that may never come. My heart knows healing and alleviation will not be found in the explained. Yet I look.
I did a deep dive into your deletion yesterday. When the geneticist told me twelve years ago where it was and the genes involved science didn’t know much yet about the specifics of what it meant. “Some proteins” was all they said. Despite advances in DNA mapping, I never did research until the after. I didn’t want to be scared. I didn’t want to mute your life because of that fear and I knew if I knew then I would.
The simple breakdown is this: you were missing pieces of chromosome 1 which included about 1.8 million base pairs. It is a moderate-sized deletion though classified as micro. Important information was missing imperative for brain and development, body stability and system regulation, immune and infection response, connective tissue and structural support. Within that deletion were 44 known, important genes that have been identified and studied. Ten of those are linked to medical conditions. I dove into the specific genes like ASH1L, SYT11, LAMTOR2 and RNA and how proteins are involved. The information uncovered to me it was a miracle we made it as far as we did, sweet boy.
I wonder if our DNA is like a symphony. When a deletion occurs, the symphony has missing instruments and incomplete sheet music. Music is still created but other instruments have to play harder and longer to fill in what is missing. Sometimes it doesn’t sound as melodic. Other times it can be quite a cacophony and struggle. Musicians have to improvise and can clash. The stress causes strings to break from the violin playing longer than intended. The cellist fingers begin to hurt. Everyone is playing furiously to compensate for the missing instruments all the while not having all the notes or how long to hold them. It is exhausting and discombobulating to the musicians but it is still music. The process is more exhausting than if they had the complete symphony and all the sheet music. After having to perform that way daily for years, twenty-four of them, and under stress the missing pieces become critical. Daily compensation leads to a tipping point unpredictable and unpreventable until one day the music stops.
But while the music played it was beautiful nonetheless. From this audience of one I never heard the missing notes or instruments. I just heard your laugh and screams of excitement. I will forever miss the sounds.
Your body was working harder every single day for twenty-four years than I realized just to make it through the day. Without those important pieces I can’t imagine how much it took just to stay steady. Other genes and systems could compensate for a while. You, my sweet boy, were the king of fortitude and that carried you. That carried us.
I also saw in the research how over time those systems of compensation become compromised. Hypotonia often becomes worse. GERD and aspiration risk increases. Reserve becomes reduced. Chronic compensation leads to systems becoming fatigued and forces a body to respond more slowly and become overwhelmed more quickly. Everything that can go wrong becomes more likely. And it did.
Your biology was vulnerable and it was also resilient. Both are true. You died young but lived long. Both are also true. You were fragile but strong. I have to find space to accept those seeming paradoxes.
Last night I fell asleep wondering if I was in denial about your medical complexity. In reality, my heart and my brain didn’t hold you as medically fragile or high risk or complex. They held and will always hold you as my son who loved pudding and laughing and hugs and music. I normalized what we lived with and we adapted to risks. Others would often say, “I don’t know how you do it,” and that would perplex me. I just did what needed to be done to give you the best life possible. I hope I did, sweet boy.
High risk was my normal. Fragile stability became baseline. Not living that way would have taken something significant from both of us and replaced our joy with fear. For that I am grateful.
We lived inside a reality that unfolded slowly, silently, and insidiously until it didn’t. You were labeled medically complex and I did my best to protect your life from being reduced to that. We danced. We shopped. We went to concerts. We hugged strangers. We ate pudding. We swam. We loved and lived without intense fear.
After you got sick three and a half years ago they told me you wouldn’t make it. Yet you did. Each night after I would kiss you goodnight. I would tell you how you are my whole world and thanked you for fighting so hard to stay with me. I didn’t know, sweet boy, how hard that fight was every day.
This time when you got sick and we knew the end was near I asked everyone to leave the room. I needed a few moments alone with you. I told you how much I loved you and how proud I was to be your mom. I thanked you for fighting so hard but if it was time to go I would be all right. You didn’t need to fight anymore. I didn’t want you to feel like you somehow failed. I told you how your Dad and Grandpa would be waiting and you would get to meet Jesus. I hoped He would tell you He was proud of me. I already knew, with all my heart, He was so proud of you.
Until your last heart beat I savored every moment with you. Every single time, no matter what I was doing, when you asked for a hug I gave you one. You were such a stinker and would ask for one sitting in your shower chair, soaking wet. I would hug you and you would laugh so hard. I will have that picture in my heart until my last beat.
I sit with the paradoxes that create a push and pull in my soul. I acknowledge both can exist and both are true. I despair it was only twenty-four years. You are irreplaceable. I am grateful it was twenty-four years. You were a miracle. The instruments that will connect those two diametrically opposing movements of my muted symphony, my sweet boy, is found as I grieve your loss and celebrate your life. Those notes are the quality of those twenty-four years. The time we did get we created by giving one another joy, loving lavishly, savoring every shaky hug, laughing at the littlest things, eating wonderful food, and caring for one another in a way even death cannot unentangle. It will be with me always, my sweet boy. As will you.
Missing chromosomes and base pairs, incomplete information – none of that matters as I sob on the couch on this dreary day. You were created exactly as He intended. You were His masterpiece. You were the most beautiful symphony I will ever hear. And being your mom is my highest honor.
I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14
It is a beautiful day today, sweet boy. The kind of day you would sit on the swing and with furious determination scroll through your Ipad.
I managed to catch up on watering plants and even repotted a couple. Still, most of the day was spent on the couch unpacking the medical trauma from two weeks ago and, of course and always, missing you.
We got to the hospital on February 17th around 11:00 am. As we waited for them to call us back you were feeling well enough to be ticked off. They drew some bloodwork, got you a room, and started IV medication and fluids. After a few hours you were moved to a different part of the emergency room where the stable patients went until a bed opened. You were supposed to go to the general medicine floor. Even the medical professionals could not see and lab work hid how sick you really were.
Around 11:30 pm it all began happening so fast that I didn’t know what was happening even as it was happening.
He is in A-fib. We are moving him to the part of the ED where the ICU trained staff is.
As soon as she finished her sentence a team descended and whisked you out of the room. We have been in the hospitals enough to know rushing teams is not good.
You were taken into the resuscitation room with an unsettling brisk pace. At least twenty people went in the room. It was the same room they took Grandpa into by ambulance 2 years before… My heart sank.
What is happening?
Let me get you a chair.
What is happening with my son?
When they do not answer your question you know you do not want to hear the answer.
I peaked in your room
Your blood pressure was 60/40. You were pale. You were dying. I begged you to stay.
Please come sit down.
Afib….Low blood pressure. Cardioversion. Shock. Could die…
Where is Mom?
I see her standing in the hallway lost. She looked so small and so scared, not the feisty woman I know.
Can you get my mom a chair?
We are conferring. He may need cardioversion to shock his heart. In rare cases it can cause cardiac arrest.
I fall to my knees. Head bowed. Hands clasped.
Please God, one more time, let me keep my son.
My mom calls her best friend on the phone. It is midnight. Her friend comes immediately.
I call Steve. He is crashing. Please come.
A nurse kneels next to us.
I don’t know much because he just got here but I will answer what I can.
Finally someone is speaking to us.
I look in the room again. His blood pressure is 50/30
We are pushing a lot of fluid.
A social worker appears. Do you need a chaplain?
The only time they call a chaplain is when someone is dying. I decline.
The fluids seemed to be helping. Cardioversion postponed. They take you to the ICU.
Over the next few days I would see only small glimpses of you. You were on a lot of medication. I began missing you already.
The next big trauma would begin on February 21st and would be your last.
No more shocks to the heart, sweet boy. No more infections or failing valves. No more cascading dominoes. Not for you, anyway. Mommy is trying so hard every day to keep one domino up. I just need one to stay stable. It often teeters but I will not relent. You taught me well. I will make you proud.
Absence is all I hear… Your laughter no longer reverberates through the house. For now, it only whispers in my heart and I long with all my being to hear more, louder, explosive you. The chaos is gone.
Yet you remain
The beautiful fractals of excitement, impatience, joy, and love are flat and cold. Normal is abnormal for us. But love does not vanish. It changes shape- Becomes memory. Becomes breath Becomes the quiet strength that lets me stand here now. What was real cannot be undone. It cannot be broken The smile. The soul-deep laugh The hugs so intense your body shook. Those are stitched into me now just as you were stitched in my womb.
I pack away the medical supplies… The gauze… The catheters… The syringes and extension tubing… The thermometer and pulse ox can go in a drawer. There are no more emergency supplies No more doctor appointments No more labs to track No more fear over every sniffle and every cough
I detest the letting go. I would have gladly done it for the rest of my days. I spent every waking moment in the caring of you. It was my honor and privilege. My purpose and calling. I took pride in the way I cared for you not knowing, all this time My sweet boy, it was you who was caring for me. All I did for you could never match what you’ve done for me. People would often say God knew what He was doing when He gave you to me. God knew what He was doing when He gave me to you.
For you were the pillar. You were the strong one. You were the wise teacher. You were the hero. You were the unrelented soul with an infinite reserve of unconditional love. You were kindness and compassion. You were grace and you were mercy. You were the fierce voice in me that advocated for you and made me better.
You were my whole world and being your mom is, and always will be, my highest honor.
Thank you all for coming to celebrate the extraordinary life of Wesley Thomas Helmbrecht. He always loved a party.
I look around this room and see so many people who meant the world to our boy. You had such significance in his life. The only thing that mattered to him was love. Not money, not power, not status. Just love. And you graciously poured it into him. Words do not express my gratitude for all the laughter, lessons, songs, dances, and love you gave him. We all gave him the best life possible and he returned the favor
Wesley was born on October 26, 2001. We had no idea Wesley would have special needs despite multiple ultrasounds… Despite a father who was a physician specializing in diagnosing fetal anomalies and potential syndromes and despite ultrasounds by 4 other physicians`. God and Wesley held their secret until the moment he was born.
And from that moment he faced challenges. He was a fighter. He was the toughest kid I knew.
In the early days the doctors couldn’t tell me how long I would have him. “Shortened life expectancy” was all they really knew. Every day was a bonus. Every hug could have been the last. Every laugh might be silenced. Any moment could turn catastrophic and it often did. Yet it taught us to cherish things otherwise seen as miniscule. We had no small victories. Every accomplishment was magnificent and we celebrated it as such. It is a blessing and a curse to live each day as if it might be the last.
Wesley didn’t crawl until he was two and a half years old. But just around 14 months he figured out he could roll. He would get around the entire house by rolling, pivoting, and rolling even more. Nothing stopped our boy.
Every since he was little and throughout his life Wes would look to the sky and wave his arms. It would begin with a smile until his entire being bubbled with excitement. I used to ask him if he was talking to the angels again. I wouldn’t be surprised if he was. He had a direct connection. And now, for the rest of my life I will look to the sky, wave my arms, and talk to my sweet angel.
When Wes was eight years old we were walking through the mall and he approached a woman sitting on a bench. Before I knew what he was doing he threw his arms around her and hugged her. A complete stranger. I can still envision her face with tear filled eyes as she said, “you have no idea how much I needed that hug.”
But Wes did. We walked away and I asked Wes if God told him to do that even though I already knew the answer. I have countless of those stories. He was an angel among us.
Wesley attended Albemarle County Public Schools until finishing at Brownsville in 5th grade. He had special friends like Sydney Sherman who invited him to every single birthday party. The teachers wouldn’t put them together in the same class for fear of distraction. I will forever be grateful to that little red headed girl who was nice to our son.
He loved riding the school bus. As luck would have it, he had the same bus driver, Gary Miller, from kindergarten through graduating VIA all but two years. It wasn’t just a bus ride for Wes. It was a party and each and every day Gary delivered our child safely home to us.
Wesley went to the Virginia Institute of Autism in 2011 and graduated in 2023. He didn’t have instructors. He had best friends. He had people who genuinely loved him. And he had classmates who, I know, greeted him on the other side.
For the last 3 years he was home with us full time. From the moment I woke up until the moment I went to bed he was constantly by my side. I intensely cared for him including medications, catheterizations, dressing changes, and g-tube care. Mixed in all that was frequent pauses for hugs. We took care of each other in those moments. Our days were filled with one another.
He demanded his daily outings. Rain, sleet, snow or shine we went out every morning. For a boy who was non verbal he was bossy. He let us know what he wanted and when he wanted it. And if I ever said no his next sign was always, “Grandma”. If mom said no he was pretty sure grandma would say yes. Because she always did.
He spread so much love and joy in every Walmart, Bucees and mall within a 3 hour radius. People were instantly infected with his love just walking past him. He created ripples and changed lives in ways only God and now Wesley know.
Wesley loved music. It was his first word using American Sign Language It was at the very core of who he was – a way of expression that didn’t require words but everyone could understand. We took him to countless wineries, Fridays after Five, and concerts. For his 18th birthday Steve arranged for us to go to NYC to see the Laurie Berkner band. She invited him to a private room to meet the band afterward. It was a highlight of all of our lives. He met Andy Grammar with tickets compliments of the UVA Football Team. One of his favorite songs of all times was “Honey I’m Good.”
In 2011 Wesley’s father died by suicide. My mother left her life in Northern Virginia and moved in to help me. She cared for Wesley and for many years was my partner in raising the boys. She still is. She meticulously prepared his special diet and slept with him every night. She would roll him into breweries on Saturday nights. It was a sight to see. Inevitably, until last Tuesday, each and every night he ended up sleeping on her shoulder. They could not have been any closer.
Almost 7 years ago God brought Steve into Wesley’s life. I knew Steve was the one by Wesley’s reaction the very first time he saw him at the Trampoline park. Wesley screamed with excitement and reached for a hug. He was the best judge of character. He could not be manipulated or fooled. He saw the essence of who you are. I always knew if he loved someone especially, they were special.
Their bond was deep and strong. Their silliness filled the house with screams of excitement and breathtaking laughter. I knew it would take a special man to enter our world and God sent us the best of them.
My aunt Dolly moved in with us a year and a half ago. Wes always loved a house full and she was the only person who would sit for hours and hold his ipad. It could easily be on the table but Wesley loved when someone just sat with him. And she did.
Wesley was loved by his brothers and sisters, Some by birth, some by blood, some by marriage, and some by love. It breaks my heart that Emerson, Nathan, Leah, Aaron, Chrissy and Audrey, baby Chloe, Stevie, and Elayna carry the grief of losing a sibling especially one as special as Wesley. He impacted them and they are changed for having known his love.
Wesley entered UVA hospital on February 17th. At first it was thought to be manageable on a general medicine unit but that quickly changed as the gravity of the illness expressed itself. He fought so hard in the medical ICU with the best doctors and nurses. I knew he was in the right place. That exact unit saved his life 3 and a half years ago. Their care and compassion to my family will stay with us and for that, I am exceedingly grateful. I am at peace knowing it was, as simple and as complex it is to say, his time to go home.
Wesley made our family’s life unique. He allowed us to live in the world of special needs. It was a club I never knew I wanted to be part of but was so proud to be a member. Our fellow citizens are resilient and inspirational. There is an unmatched comradery among people here and you never feel alone. I have met parents who paved the and given me a road map of grieving the most significant loss possible. I have watched them come through the other side and live life again. It gives me hope that we will do the same with the help of our loving God.
Every single night I would kiss Wesley goodnight and tell him he is my world. He smiled every time because he knew that was the truth. My world is shattered yet my faith is strong and I know God will give us the strength, peace, and endurance we need for this unimaginable journey. He already has begun.
As a mother who gave birth to one of humanity’s most extraordinary human beings, I knew I would bury my son. It doesn’t make it easier. It doesn’t make it peaceful. It is raw. It is cruel.
I always knew our time was borrowed. In Christianity we hear words like “our children are on loan from God. They are His.” I think most parents who share our faith understand it is as a concept of spiritual trust but never actually live in that space. It was our reality. From the moment he was born I knew I wouldn’t keep him. I knew in the depths of my heart I would be standing here today. I would gladly bear the pain of losing him 1,000 times over than have him know the pain of losing me. God’s mercy needs untangling sometimes and it isn’t pretty to us, but it is there.
My faith has sustained me since childhood. I buried Wesley’s father 15 years ago. When I spoke at his eulogy I shared the two words I clung to. I find myself in another cruel February clinging to them once again.
But God…
Wesley is gone BUT God generously gave us 24 years… My heart is broken BUT God has given Wesley a new heart, one that can not be infected or fail him… We are devastated BUT God has promised blessed are those who mourn for they will be comforted. And He keeps every promise forever. I don’t know who I am if not Wesley’s mom and caregiver BUT God will give purpose to this pain My children mourn the loss of their brother BUT God has surrounded them with love and friends and one another… I will never feel Wesley’s whole soul hug during this lifetime again BUT God had Wesley give me so many during his 24 to last the rest of mine…
God is good when He says “yes”. God is good when He says “no”. One of my frustrations as a Christian is when everyone declares His goodness because He answered the prayer in the way they wanted. They proclaim it when they see a miracle, the miracle as they thought it should be. A loved one is healed – God is good. A soul is saved – God is good. Catastrophe averted – God is good.
Our son died.
I tell you now…God is good. We still got miracles. They aren’t the ones we wanted but they are here and they are coming. There will be ripples of miracles I will never know. I am honored for the miracle of 24 years with Wesley when I didn’t know if I would get 24 hours, 24 days or 24 months. God didn’t take Wesley too soon according to His timeline. For this mother’s heart it absolutely feels too soon but also feels generous and merciful.
When Wes was a baby we would play a game. I would hold his arms and say, “Oh my where should I?” then I would pause. He would giggle with anticipation. After a few seconds I would exclaim, “tickle!” and tickle him somewhere with my chin. It was one of his favorite games. He waited with joyful anticipation because he knew the hands that held him. He knew they were loving and kind and only wanted to best for him. The empty space wasn’t frightening. It didn’t cause him anxiety. It made him joyful knowing something good was about to happen.
I sit in the stillness of a once beautifully chaotic life. The anticipation is there. Is it joyful? Only because I choose it to be. I choose joy. I know whose hands hold me. I know He is good. I know He is loving and kind and merciful, and generous. I know He will somehow, someway create good. If He could create the ultimate good from the death of His own son, He can and He will with mine.
We had 24 years of bright, unfiltered joy. It wasn’t small. And it is not unfinished. God did not silence that laughter, He opened the room. Now Wesley’s laughter is shared with the angels and saints in the presence of his grandfather and father and our Good, Good Father. His laughter is now joined in the songs of worship around the throne. He stands tall with no balance or strength issues. There are no wheelchairs in heaven. There are no doctor appointments or bad news. There are no challenges to overcome in heaven. Just love. Just unfiltered, untarnished, inexhaustible, exuberant, lavish love. Wesley was, no doubt, right at home there because that is how he loved us here.
I close with a verse, a hope, and an assurance. 2 Timothy 4:7-8
I have fought the good fight, I have finished the race, I have kept the faith. Now there is in store for me the crown of righteousness, which the Lord, the righteous Judge, will award to me on that day.
Our boy did fight the good fight. His race was harder than most and he never complained. He never felt sorry for himself. He carried what was given to him and just loved. I know his crown is spectacular. It is well earned. I will always remember the grace with which he carried his challenges and lavishly loved not in spite, but because of them.
I always said we spent so much time trying to make Wesley more like us when, really, we should be more like him. I urge you all to be more like him. Laugh loud Love hard Hug Tight Dance Silly Leave the room better than when you came not because you were loved, but because you loved. And do it with all you have for as long as you have. Just like our sweet, sweet boy. In that his story in us is yet unfinished.
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.
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.
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.
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.
