“Is love available even here?”

by Tim on June 24, 2014

A wise friend of mine has this tattooed on her wrist. It reminds her of one of the most fundamental questions we must ask ourselves when life goes to pieces and hope seems so far away. 

This question has come to me often in our many hours in the pediatric oncology clinic. Of all the children we see, I know the inescapable truth is that some of them will not survive. There will come a day in the not-so-distant future when their bright smiles, indomitable spirits, and their endless courage will shine only in memories. 

Cancer is a cruel and evil monster. You cannot bargain with it. Its sole intention is to take over and kill. We live in the presence of an unfeeling, relentless enemy. We fight it down to the ground with our bare hands. Some of us will lose. It threatens every day to tear our lives to dust. 

But in the face of it, we can ask ourselves this question. Even in the midst of terror and the very end of hope, we can ask it. 

Is love available even here?

I see parents altered down to their DNA by fear. They have emptied themselves of everything they have to save their children, and have become shells of what I imagine they once were. Yet they carry on, hunched over by the weight they bear, determined, going on pure instinct and love. Covered in cracks, they threaten to shatter at any moment. But somehow, they never stop; they never quit.

I saw a dad bent low, exhausted, and leaning from shouldering the weight of the world, pulling his frail daughter in a red wagon with one hand and her IV pole in the other. He took step after step, lap after lap on the pediatric oncology floor. She was too weak to stand and could barely move in the wagon, propped up with blankets and pillows. I wondered whether she was a prophecy of our son’s future, and her dad of mine. But somehow, flowing from his hand, to the handle, to the wagon, and into her body was a wordless spirit and bond that would bear itself to the edge of doom. 

Is love available even here?

One family had been in that hospital for six months. They lived in a time outside of time, a place outside of place. Their entire universe had shrunk to a couple thousand square feet of hospital floor. Days were measured not with hours, but in good or bad, progress or setback. But somehow, they reached out to us, perhaps seeing in us the same terror they have seen in their own mirrors. They offered us encouragement, told us we would be strong enough, and then they returned to their child’s room having worn that path bare. 

A little girl of barely two, thinning hair and a nasal gastric tube came toddling into the play area and settled in next to Dale Jr. They played in a sort of slow motion. Their IV poles bumped into each other. They smiled at each other and seemed almost like kids again, like nothing bad had ever happened. Her mom laughed, and we laughed. Seeing our kids happy now takes on infinite layers of meaning. In those moments, the future stops, balanced between joy and terror. But somehow, our children hold hope for us within the present moment when we can barely breathe.

Is love available even here?

One child wrapped himself around his IV pole and stood on the base while his mom pulled him along. He was too physically weak to walk himself. He was pleased to be upright and moving briskly around the clinic again after his body had succumbed so much to the chemo. And his mom was happy that he was happy again. Everything around us remains unknowable. But somehow, in that moment they found joy wrapped around the same instruments that ravage his body. 

Two little girls, both bald from the chemo and swollen from the steroids, sat at the playroom table, each with IV poles standing like prison guards next to them. Bags of fluids dripped slowly into their arms, chemical warfare tearing their bodies down to scorched earth. Each day, they balance on the edge of a knife between death and the chance to rebuild their lives from the depths of their merciless cancer. But somehow, neither paid the IV poles or chemical weapons any mind. These things had become so much a part of their lives that they sometimes melt into background noise. 

They sat at the table together playing Candy Land. They are about my son’s age. They laughed with each other again and again as the game went on. They were once strangers, but somehow these unimaginable circumstances led them there to that game at that table on that day where they could laugh and be kids again. 

Is love available even here?

I saw the parents’ ashen faces. The staff paused and parted and give them space. I knew what this must mean. They faced the unspeakable question. There are no words anyone can offer. There can be only silence. But somehow, in the pausing and parting, the standing by and with, they were surrounded by those who will watch and wait, stand vigil through this total darkness until the day comes when it is time to speak again.

Is love available even here?

My own beloved son says, “The medicines give me bad dreams. I am scared of ghosts, monsters, and bad guys. It started when I started taking the medicines.”

He pleads with me, over and over, “Daddy, when can I stop taking the medicines? Daddy, please can I stop taking the medicines?”

I feel broken. No, it’s so, so much worse than that. I can’t find the words. All I can say to him over and over is, “I’m sorry. I’m so sorry.”

He covers himself in band-aids because he feels torn apart. He hides the king and queen deep inside the castle and surrounds them with knights and superheroes of every kind until there’s an impenetrable ring encircling the castle. This is how he speaks of his terror. 

He’s 5. This shouldn’t be happening to him. This shouldn’t be happening to any of them.

We learn to give him chemo at home ourselves to save trips to the clinic. I take extraordinary precautions to not spill a drop of it or get any on myself, yet I am injecting the entire contents of it directly into his chest. I have to suspend my emotions, tell myself this is the only way to save his life. He lays there, his vibrant energy flowing out as the chemo flows in to replace it. It flows into the cracks in his body and soul and pushes them apart even farther.

I spend the whole week of his treatments between the verge of tears and crying, floor-pounding rage. I hide my emotions from him. He is already bearing too much. His play therapist believes he is suffering from traumatic stress. He worries constantly about the house catching on fire or bad people breaking into the house, neither of which has ever happened. He locks the doors of rooms he’s in, even if we are with him.

He knows enormous words like antibiotics, histiocytosis, and heparin when he should be telling jokes about bodily functions with the other boys. 

Is love available even here?

Love is the only thing that can remain unbroken even against the full fury of these horrors.  We have been surrounded by people who feed us when our bodies are crushed and weary. We have been enveloped in the thoughts and prayers of family, friends, and complete strangers when our faith and hope in the future have faltered. Their acts of kindness have flowed through the empty places in our lives and renewed our faith in love and compassion.  

These stories and countless like them will go on. There are no tidy, happy endings. When we love someone fiercely and completely, we risk losing everything. We risk devastation, and we have so little control over any of it. 

But somehow, we choose to love regardless. It is what makes us human. It is what  gives our lives meaning and beauty.

It is why love with always be available, even here, even anywhere, whatever may come. 

{ 6 comments }

When It Falls Apart

by Tim on May 2, 2014

It has been a long time since I’ve written anything. Life for us has turned into a never-ending series of challenges, challenges unlike any we’ve ever faced.

As some of you know, I was hospitalized in Michigan right before Christmas for almost two weeks in an intensive program to try to cure my 24/7 migraines. This worked… for a while. Even with this period of decreased head pain, the aftermath of the previous year – most of which was the product of my own horrible decisions – replaced it. Then within a few weeks, the headaches returned, and everything merged into something that left us surviving from day to day.

Then it got worse. Much worse.

In late February, Dale Jr. was complaining that his right arm hurt. We thought he had perhaps fallen on the playground at school or while playing with our friends’ kids. But it didn’t improve, and he certainly wasn’t faking it for attention. He couldn’t put weight on his arm and was constantly guarding it against his body.

So we took him to the pediatrician, who seemed convinced that we were overreacting. Dale Jr. passed a full range of motion test. But the pediatrician said just to be on the safe side that he’d order an X-ray to see if perhaps he had fractured his clavicle or had some other kind of injury that might not readily show up during an exam.

What ultimately showed up was something we never could have expected, something that would instead completely change our lives.

The X-ray detected a small mass on his right first rib, enough outside the focus of the X-ray to be unable to get a good look at it. So they immediately called him back in for a CT scan of that area. Within no time, they called us – at off hours on a Saturday – with the results. They weren’t good, but they couldn’t be more specific than that. We were told to immediately report to the North Carolina Children’s Hospital for direct admission to the Pediatric Oncology floor.

We heard the word ‘oncology’ with horror and disbelief. All we could do was throw together some luggage and leave within an hour, having no idea what was going to happen next.

The next days were like being cast into a cauldron of denial, desperate hope, and abject fear. We felt like we were in a bad dream we would wake up from any minute. We fell into that trance of just getting from hour to hour.

We took walks around the Pediatric Oncology floor. He played in the play areas, rode tricycles up and down the hall, and chatted up the nurses, doctors, and the other kids, like nothing was really going on. In time, he began to ask questions about why he couldn’t eat, why they were doing so many tests, why he had to have all these things stuck into his arm. He worried about the other children there too weak to stand and walk on their own. He asked why they had little or no hair. We never figured out whether he feared that would be him someday. I know we did.

We tried to shelter him from all this fear and the complete unknown we all faced. But who can really stand against something like this.

After several days in the hospital, the tests came back that he had multiple areas in his chest and abdomen that were growing abnormally. If it came back positive for some form of cancer, it would be classified as metastatic, and his odds of survival would involve numbers we would not be able to speak aloud. There were other things it could be, each with increasingly better odds for getting to a place beyond this nightmare. We knew it would be something; at that point we just begged for him to be able to live.

We had to wait the better part of another week for the pathology results. We paced the floor. We barely slept at first and then just started collapsing after that. We begged for him to be shown mercy. We begged to be allowed to take this from him and bear it for him.

We walked into the exam room together to hear whatever the doctor had to tell us. As I crossed the threshold of that door, I remembered all too clearly the walk, almost six years ago to the day, into a doctor’s office to hear the diagnosis of autism for our J-Man. That day felt like the end of the world, though in hindsight I now know it wasn’t. The more we learned from that day on, the more experience we got, the more we realized that so much wonder and beauty would permeate our lives. I clung to that for dear life.

This time the stakes were infinitely higher. Autism will never be cancer. But over these years, our J-Man had already taught us how to bring forth the very best of who we are. I never could have imagined how much we would need what he has given us. I had to believe that we would again rise to whatever was coming next.

The results came back that Dale Jr. has Langerhans Cell Histiocytosis (LCH). It is extremely rare (1 in 200,000) and is currently a lifelong condition, but the treatments are relatively manageable and the outcomes are good. The doctors said they actually cheered. It could have been so, so much worse, and they had feared it was. We all exhaled.

dale-jr-capeIt is an unusual disorder in that it has properties both of cancer and an autoimmune disorder. In the upside-down world of oncology, this really was the best possible outcome for him. Other cancers could have meant survival rates as low as 25% or worse. With LCH, when caught this early, if he responds positively to the treatment protocols, his future prospects are excellent.

But in the meantime, he must get weekly chemotherapy treatment for at least 12 weeks. If the resulting scans show that his lesions have adequately shrunk or disappeared, then he can go to monthly treatments for another nine months or so, for a total of a year of treatment. After that, he’ll get regular scans, and we just pray it never comes back.

Because of all this, we had to withdraw him from preschool. He was devastated. They have rallied around him even in his absence, lavishing love, gifts, and their sincerest thoughts and prayers upon him. We went back to his school for a brief visit one day, and they treated him like a rockstar coming home. The church the preschool is part of has cared for us like their own family.

We recently learned that after his first six treatments, his lesions are indeed shrinking. He crossed the first major hurdle on his path back. He should get to start kindergarten on time in August. Hope is being reborn.

We are so proud of him. He has faced all this with amazing bravery. He has a port in his chest, scars from two surgeries, and has all sorts of things done to him weekly. Yet, he takes it all in stride. He asks lots of thoughtful questions. He comes to us and talks about being afraid, with no shame or self-judgment. We are basically nervous wrecks. He is a superhero.

We worry that he is having to grow up far too fast. He should be back in preschool playing on the playground and telling jokes with his classmates. But he has accepted this with grace, and I imagine someday it will serve him well.

We look at our two boys and realize something extraordinary about them both. They teach us time and time again how to be brave in the face of challenge and adversity. They show us about kindness in the midst of fear and uncertainty. They take steps forward into the unknown every day. Do the next right thing; that’s all. Worry about the rest later.
j-slide

They bring out the best in others. People love them. They each call forth something deep and beautiful from within everyone they meet. We face many hurdles ahead, but we can most certainly be grateful for this. They are already building the community they need, and we need, to thrive in the months and years to come.

In his minimal, halting speech, our J-Man recently put together the words ‘family’ and ‘together’. Dale Jr. tells us how much he loves us at least a dozen times a day. Out of the shattered fragments our lives had become, they are living out what is most important. And I am their pupil once again.

And this is how we will rebuild.

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An Open Letter to Autism Speaks

by Tim on November 17, 2013

[note: This is in response to the recent statement issued by Autism Speaks.]

Dear Autism Speaks:

My child is not missing. He is right here. I just put him to bed a few minutes ago.

Nighttime is one of our most precious times together. I sing his favorite songs and say our ‘nighttime words’. Some may call it a script; I call it a holy liturgy.

When I am done, he gives me a quick kiss. Maybe he will go to sleep soon after; maybe he won’t. But I am there, and he is there with me. And neither of us are lost.

One of the songs I sing to him is Amazing Grace. These familiar words within its first verse became so clear to me upon reading your press release.

“I once was lost, but now I’m found.”

You see, before our J-Man came into our lives, I was adrift. I didn’t know what the purpose of my life was. I just did my work and often muddled through my days. dad-child-high-five

But then he came to us as the gift he is, and so much sharpened into focus. I never knew I could love another person like that. I never knew that the purpose of my life could become so clear and so wonderful.

When he was diagnosed with autism, sure I was upset for a time. Diagnosis Day was so very hard. But in time I began to understand that this was my life’s mission now. And I accept it gladly because it means I get to spend it with him.

To make it absolutely clear, I’m not merely existing. Rather, being an autism parent has taught me how to become fully alive. I even wrote an entire book called I Am An Autism Parent as a celebration of that journey of how he transformed me.

My son is not lost at all. He is wonderfully made. Everyone who meets him loves him. He has taught me through his perseverance and courage how to overcome obstacles. Not only is he not missing or lost, he has taught me to find myself too.

You are right at least about one thing. My life is lived moment-to-moment. There is no other way to live life. But you make it sound like a tragedy. I have come to see it as a gift about which to rejoice.

Our J-Man is aware of many minute details, objects, time, and space. Through his life, I have come to see them too, to slow down and become aware of the present moment and all that is contained within it.

You describe many challenges we do face. There is no denying these. However, you imply something that I find to be a horrible misunderstanding of a fundamental truth.

We are not facing these challenges alone.

We are not three million parents isolated from each other. We are a family. Like any family, we disagree about things and often don’t get along. But mess with one of our kids, and we will be the calvary for each other.

The problem is that you have cast a pall of fear over autism so that new autism parents and many who have been at this a while have bought the stories of fear and hopelessness. They see the darkness you have enshrouded autism in.

But we are here to tell a new and different story. We are here to shine a light on autism, to bring it out into the warm sunshine of day.

Ours is a story of hope. Ours is a story where we have each other’s backs. Ours is a story where we reach out for help and a hundred hands are there to greet us. I know this is our story because I am living it.

I have gone through a hellish year this year because of my personal health. But everywhere I turn, other parents, friends, and family have been there to help us. I have faced enormous challenges, but never alone.

This is the real story of autism. And your old story of fear and hopelessness is now finished.

My son is slowly each day developing his own voice. He may be years ‘behind’ in typical development, but slowly, surely, inexorably, he is developing his voice. He has things to say, edging their way out like a seedling toward the sun. And as time passes he will say more and more, and we will continue to rejoice.

And you will never speak for him. Our role is to help him learn to speak for himself, to proclaim his own truth, to direct his own life in the way he chooses. And I will teach him the same stories of hope, determination, and perseverance that my foremothers and forefathers passed through the generations to me.

One major crisis is that the general public doesn’t understand how awesome our children and loved ones, younger or older, are. You think they are lost and broken. And society has bought your lies. They treat those we love as second-class citizens.

No more. We are rising up as one to tell a new story.

You have wrapped this horrible story in half-truths. These are the worst kinds of lies. You were entrusted to be an advocacy organization, and you have betrayed us.

You call for a military-level response to issues of autism, and you will get one. We are the calvary, and we will tell our new story.

We will proclaim a new hope. We will proclaim the value and integrity of each and every person. We will respect each other in our diversity and welcome all persons to the table. Whether each person expresses themselves through their own voice, an assistive device, sign language, handwriting, or any of countless other means, their voice shall be heard.

You want a national response? You got one. Here we are. We are autistic and neurotypical and everything in between. We are parents, children, and adults and each of us loved, younger and older and every age in between, autism families, educators, and caregivers. We may disagree about many things, but we are one in our belief in those we love.

Whether it is my son, my friends’ children, or autistic persons of all ages – many of whom are adults you seem to deny even exist – we will fight for them with every ounce of strength we have. They will be valued and respected. They will have the supports they need to achieve the fullest expressions of themselves. When people put them down, we will have their backs.

We will carry our mission into every conversation we have, every school and office building, every legislature and branch of government. We are not in despair; we are relentless in our determination and hope.

We are not foolish. We know the challenges are enormous. But as I put my son to bed each night, I know that somehow I will be strong enough. He has shown me how to be strong, to meet challenges and overcome them, to persevere and never give up.

“Through many dangers, toils, and snares I have already come.
‘Tis grace that’s brought me safe thus far, and grace shall lead me home.”

Because of this I know this is not a crisis; it is pure grace. I reflect on all the other parents putting their children to bed, and I feel our solidarity, our oneness in love for our beloved children. I think of all my autistic adult friends who inspire me every day with their courage and rallying voices. We may have a long way to go, but together, I know we are going to find our way home.

We have come a long way in spite of you, and we will join together now to lead this movement forward without you. Let us go forth in respect, grace, courage, perseverance, and hope.

Allow me to close with the words I vowed to my son starting on his Diagnosis Day. It encapsulates everything I believe I should be. He was never lost or taken from me. He was right where I dreamed he would be. And I chose him, the day he was born and every day since.

I pledge to love you and be right there with you every step of our way together.

No matter what comes, no matter what challenges we face, no matter how frustrated you get or how afraid or overwhelmed you become or how much or how little you say now or ever, I’ll do everything I can to see you through.

jonas-cover-crop And together we will discover what you love most and what you most love to do, and we will help you share every gift you have with the world.

I chose you. I chose you the day Mama and I formed you and forever before that. I chose to walk all of the days since I was born to find the path to you, to find you right where I’d hoped you would be.

I chose you the day you were born. I’ve chosen you every day since. And I will choose you every day for the rest of my life.

You are our gift. You are the world’s gift. And there is not anything that could ever change that.

I am so happy that you are you.

Yours in celebration of the awesomeness of all,
Tim Tucker

{ 9 comments }

Caring for Your Older Autistic Sibling

by Tim on October 18, 2013

I realize I haven’t talked a lot about our younger son, who we call Dale Jr. here. He’s now 4 1/2 years old and is exceptionally bright and observant for his age. He misses almost nothing, and is routinely telling us about all the new insights he comes to. Not a day goes by that we don’t marvel at some new bit of wisdom he’s discovered.

He also asks a lot of questions. After all, asking questions is certainly a sign of intelligence as well. However, there is one area largely missing from his questions: Why is his brother not like all of his friends or himself?

We have certainly raised him to believe that differences are a good thing, and we don’t make a big deal – or any deal at all – of the J-man being autistic. To us, it’s another way of experiencing and processing the world. We do our best to celebrate each of our two sons’ unique gifts.

dale-jr-and-jman If Dale Jr. were to ask questions about his brother or about autism in general, we would certainly do the best we could to answer them. But it seems to me that he simply sees him as his brother whom he loves, and that requires no explanation for him really.

We went to Dollywood over the summer – the first amusement park trip for either of them. It went better than we expected, though there were still numerous challenges. We had to keep a pretty tight rein on both of them in the crowds, but keeping close tabs on the J-man’s sensory and social stresses took up a lot of our focus. And I think Dale Jr. sensed this.

We stopped in one of the park’s restaurants to get something to eat, and Dale Jr. took his brother’s hand and led him through the line. He began narrating the food options from the menu to the J-man (he’s an impressive reader for his age). It was so sweet to watch him take care of his older brother. And never has he made a big show of it.

He has even become one of the J-Man’s ‘translators’. Our J-Man is minimally-verbal and with regard to verbal speech is roughly equivalent to a 2 or 2 1/2-year-old. When he does talk, his speech sounds can be very difficult to understand to all but a few people. Sometimes even we have to ask him either to spell out the word he’s saying or type it out on his ‘talker’ (speech device). Dale Jr. has become at least as good at understanding the J-Man as we are, and he’s more than happy to help others understand him with no hint of awkwardness or self-consciousness. It really is beautiful to see.

Lately, Dale Jr. has developed a keen awareness of when we are meeting with someone related to the J-Man’s autism, like the doctor, therapist, services provider, etc. It’s become very important to him to tell whoever we’re talking with that “my brother has autism.”

I’m not sure what thoughts are going through his head while he does this. I don’t yet know what he thinks autism is. I imagine he’s not completely sure either. And that’s ok. What is so wonderful is that he is clearly doing it because he’s looking out for his brother. And he doesn’t seem to be doing it out of any sense of obligation. He does it simply because he loves his brother.

He has a pretty keen ‘autism radar’ in public too. He has seen other autistic kids and gone over to play with them. If the child doesn’t reciprocate, he doesn’t make a big deal of it. He just innately understands. Recently he was with me at the J-Man’s school for pickup, and he had on a Wonder Pets sticker. Several of the kids at school are really into the Wonder Pets, and he loved the attention of having the kids come up to talk to him about Ming-Ming. Dale Jr. can be rather shy, but he seems at ease in situations like these.

I believe he will have amazing insights to teach his peers and adults about autism. He already is. He identifies it with someone he loves. He doesn’t fear it. That he loves his brother and autism is part of his brother is enough explanation for him.

Perhaps we overcomplicate everything when it comes to autism. Extend love and kindness to others, and let go of any fear. Take care of those dear to us. Love and value people for who they are. It really is that simple. My 4 1/2-year-old taught me that.

{ 3 comments }

I Am Disabled

by Tim on October 9, 2013

I am disabled. There. I said it.

And today is my 40th birthday.

And I’m coming out of hiding so that something good can come of this.

As you may have noticed, I have been absent for several months from blogging. I have popped up occasionally on Facebook, Twitter, and Instagram, but mostly I’ve been laying low.

And by laying low, I mean… well honestly, I’ve been in continuous pain. I suffer from constant migraine headaches. I’ve had fewer than 24 total pain-free hours since January. If I’m not completely asleep, I feel pain. Even sleep isn’t much of a respite because the meds I’m on regularly give me nightmares.

Silhouette of young man against blue curtains I stopped blogging because I didn’t want to face my new reality. I wanted to believe it would get better. I wanted to keep pretending that a cure was just around the corner, that the dozens of doctors’ visits would be enough. But now it’s time to face reality so I can move forward. It is reminiscent of our J-man’s Diagnosis Day, except this time it’s me.

They have some ideas about at least part of what’s causing the headaches, but other aspects of it are still a mystery. All treatments to this point have either barely helped or failed entirely. And I have a small army of good doctors trying to help me.

Each treatment has held the promise and hope that maybe this is the one that will stop the headaches and let me return to normal. Each time, that hope has evaporated. I feel like I’ve sung these refrains before in our J-man’s early days of therapy. But again, this time it’s me.

At a recent neurology appointment, we discussed the latest procedure that hadn’t worked. This should have been the one to fix it, but it didn’t. We talked honestly about how my pain is actually getting worse, the medication side effects are piling up, my body is unraveling, and my emotions are frayed.

And then he said a word I had never even thought about in reference to myself. I could not have possibly conceived of this word ever being used about me.

“I think it’s time that we look at this as a disabling condition.”

And even then it didn’t register.

A couple of minutes later:

“Now this may only be a semi-permanent disability, but since you can barely work you should consider filing the paperwork to go on disability.”

The jagged points of his words started to penetrate my mind.

I really am disabled, I thought. I can’t believe it has come to this.

I don’t know how to make my peace with this yet. I know it may not be forever, but it’s certainly going to go on for a long time.

I have gone from marathon runner to disabled in less than a year. These constant headaches have stopped my life cold. My business has all but fallen apart. I can’t do even half of what I need to do around the house. I’m now at my highest-ever weight. My ability to play with the kids and be the kind of dad I want to be for them has deteriorated badly.

I feel like I am often a burden. I can’t do my share around the house. More and more people are having to help me do things. I’ve put on a good show and hidden a lot of this from people, but I can’t anymore. I need this to be out in the open now.

Mary and I talked the other day. We are both at our absolute limit. We need help. And I don’t ask for help very well at all. We won’t survive without it, though. I know the first step is being honest about where we are.

There are turning points in our lives where so much changes. Diagnosis Day was that way for our family. And now this public statement of who I am becomes another turning point. I am no longer the person I was, and I don’t know yet who I am going to become.

But as he did with Diagnosis Day, our J-man is teaching me how to handle this new challenge. He, too, is, by any measure of the word, disabled. He depends on us and others for most every daily task. No one values him less because he isn’t able to do these things, though. He’s the embodiment of love as simply being who you are, not what you can do or not do.

I am trying to extend this grace to myself even as I feel like a burden. Mary is having to do much more of the daily chores and tasks of our family. Our finances are in even worse shape because I can work only barely, if at all.

I am learning to accept that I am loved regardless. I am struggling to find new ways to contribute to the daily needs of our family. I am trying to learn how to ask for help and accept the generosity of others when that help comes. These are things our J-man has already figured out. He is again my teacher at a critical turning point in my life.

And he is showing me one last lesson that I find myself clinging to now. Just because I am faced with many challenges and limitations, I can still have goals and dreams. They may be different than the ones I started with, but there will be great things I can still do.

I will still make that dent in the universe.

I have sought out people to help me discover what my new path will be. I have been reminded that the best way to find healing and support is to be open with your friends and the tribe of people who love you. They have rallied to help me. I can’t even begin to convey how much this means to me.

It has reaffirmed what I hold as a personal truth. Most people are inherently wonderful, and they want to help. You just have to give them the opportunity to help you.

I’ve decided to give myself a clean slate. It’s a new day and a new year. This is now my new life. And I feel strangely hopeful in the midst of the pain and fear. With the help of family and friends, I have overcome challenges before. And despite the fact that this challenge is perhaps greater than any before, I have faith that together we will find something wonderful to make of it.

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