I knew that becoming a parent meant juggling a number of different roles. I am the mom, the planner. The guiding light.  I am the ouchy healer and the bedtime snuggler. I am the confidence booster and the ultimate cheerleader. And because my son is a puzzle; I am also the puzzle master.

When my son was diagnosed with autism spectrum disorder at two years old; we began unlocking the complex puzzle that is his brain. We did not know what to do with the pieces. We did not know where to start. We were scared. Scared that we did not know what to do with the pieces. Scared that the pieces may never fit together.

And, in that moment we could have given up. But we did not. Because the rules of parenting are actually quite simple:

Rule 1: Love your children fiercely. No matter what.

Rule 2: Protect your children and keep them safe. No matter what.

Rule 3: Be what they need you to be. No matter what.

And if my son needed me to be a puzzle master; then that is exactly what I would become.

My precious little boy is so complex.  His brain works in a way that leaves me feeling both amazed and terrified at the same time.

He is smart and calculating and strategic in everything that he does. There are no accidents. His actions are intentional. On-purpose.

At age one he used to intentionally throw his snack cup on the floor. After watching the cup hit the floor he would look up at us, gasp, and say “uh oh”. In those moments we laughed. We picked up the snack cup and said “Silly boy, it is not an accident if you do it on purpose.”

That sentence has become a defining sentence in our life. Trying to teach him about the consequences and rewards of his intentional maneuvers. Reminding him that sometimes the right thing to do is not the most logical thing to do. Because on his own he does not account for the human factor. It is unnatural for him to think about his actions in relation to other people’s feelings. It is easy for him to disconnect that way.

This is hard for me to understand. It is hard for me see him laugh at the sight of someone crying. It is hard for me to understand how someone so sweet and full of love and warmth can be so cold.

And then I remember that he is a puzzle.

When I believe that I have seen every side of his personality; he reveals a new side to me. When I think I know all I need to know about who he is and what makes him tick; he starts ticking in a different way. When I start to feel over-confident in my ability to plan and prepare for his behaviors; he throws me for a loop and shakes my confidence.

He is ever moving through his puzzle. Ever changing. And he is ever willing me to keep up with him. Physically. Emotionally. Mentally. He wants to take me on his journey.

I give it my best effort. And sometimes, even if only for a short while, I can keep stride with him. Then in an instant he is miles ahead of me soaring and twisting and turning in directions that I could not predict.

And he grows frustrated when I cannot keep up with him; physically, emotionally, and mentally. He does not understand why I cannot keep up. He grows frustrated as I fall further and further behind. And from so far back I wonder if he can still see my face. If he can see my longing to be beside him. I need him to know that I would give anything to keep his stride. To follow his journey. To let him lead. To be led.

I plead with him to slow down. To come back and show me the way forward. I ask him if we can take it more slowly, together. And even though he does not want to come back for me, he does. We begin to move forward again. He starts slowly alongside me. And then again, all too quickly, he is out of my reach.

Part of my journey as a parent of autism is to put my faith in things I cannot see. I cannot always see where he is inside of the beautiful puzzle of his mind. I can rarely tell where he is headed. My job is to teach him about kindness and compassion. To help him understand the way his behaviors impact the world around him. And the way the world around him impacts his behaviors.

My son is a puzzle. To me and to the world around him.  But I have learned that is it the pieces that make the puzzle and not the other way around.  I see all of the pieces of my son. It is not always clear to me how they will fit together. But, I see them. And, I will keep seeing them. Until one day, when all of the pieces just fit.

JS

Everything we know about autism we have learned by watching our son over the last twenty-three months.

Sure, I have read my fair share of online articles and books. I have watched countless documentaries. I have connected with other professionals and parents exploring the ins and outs of this advanced sensory processing disorder.

But my son’s autism is like an a la carte version of everything that I have ever read. It is little pieces of this, and little smatterings of that. There is no recipe. No directions.

Take little pieces of all of things you think autism might be, put them together in a bowl. Then mix them around and around again. Mix them up just a little extra for good measure. The result is what our son’s autism looks like. A mix of little and big pieces of everything that autism can be.

Some of the pieces we expected. Other pieces we never saw coming.

Autism is so much wigglier than I ever could have imagined. If you have every spent any time around my son you will know exactly what I mean. There is just a certain electricity that comes from him. I often tell people that if you keep your voice very quiet and get up close enough to him, it is almost as if you can hear him buzzing.

The wiggles are both an emotional and a physical reaction. Sometimes we know the wiggles are coming and other times they catch us by surprise.

I have learned a lot of big words since our son’s diagnosis. In autism treatment we talk a lot about the antecedent. Or, the thing that occurs right before a specific behavior. When it comes to Grayson’s wiggles we are trying to observe the things that are happening right before he becomes wiggly. In theory, if we can identify the antecedent we may be able to identify the root or primary need the behavior is fulfilling. And, once we understand the need, we can help him to adapt his wiggles to more socially appropriate behaviors.

Sometimes his wiggles are small. It can be something as simple as a toe tap. Sometimes his wiggles are really big. He will stand up suddenly from the couch and begin to run in laps around our house. At times the wiggles are just physical movements and other times they are both sounds and movements. His wiggles can be over in an instant or last an entire day.

There is still so much about his wiggles that we do not understand.

We know that Grayson gets wiggly during extreme emotions; when he is really happy or excited or angry. Almost as if sometimes his emotions just get too big for his body. In those moments we can usually see the emotion building and we know that he is getting close to a wiggle burst. When we can see it coming we try to talk calmly to him. But, once Grayson is in a wiggle, there is very little we can say or do to help him snap out of it.

In that moment, for whatever reason, he needs to get that wiggle out. So he wiggles until he does not have any more wiggles to wiggle out.

Sometimes the people around us have a tough time understanding Grayson’s wiggles. After all, for the most part people are pretty good about controlling their bodies and keeping their wiggles in check. So, watching my son lose control of his wiggles is confusing for people. Believe me, it is confusing for me too.

I always tell people not to be afraid of Grayson’s wiggles! His wiggles are just something he needs to do, like going on a break or taking deep breaths. I understand that it may look scary, but his wiggles are all about helping himself, not about hurting anyone else.

Recognizing my son’s wiggles and his need to release them helps me to recognize that I myself have lots of wiggles just waiting to get out! I get my wiggles out by working out or having dinner with my friends. I get my wiggles out during an adult’s only conversation with my husband. Sometimes I get my wiggles out when my sassy two year old leaves the room and I shake my fists behind his back. (Come on, you know you do it too.) I get my wiggles out in lots of ways. Because getting our wiggles out is a good thing.

I learn so many things from my son’s autism. I have learned that being wiggly is just a part of life. And, whether our wiggles last a brief moment or all day, learning ways to self-regulate and keep moving through life is such a valuable skill.

Be unapologetic in your wiggles. It is ok to do things that make you better, especially when they do not hurt anyone else.

JS

I know that I expect too much from my typical son. I know it and see it and feel it in big and small ways every single day.

In the way he rises to the occasion time and time again to be what we need him to be. In the instances he accepts less than he deserves to help us move forward from a difficult moment. In the gentle sadness in his big blue eyes that see things I cannot protect him from. I expect too much of my typical son. And every single day he rises to the occasion to be the little man that I need him to be.

We received my oldest son’s autism spectrum disorder diagnosis when my youngest son was only 11 months old. But out great expectations of him started long before his brother’s diagnosis.

Our oldest son has always needed a lot from us. He needs time and energy. He needs our focus. He needs constant direction. And redirection. And then more direction again and again. He needs patience. He needs so much patience that we spend time each day taking deep breaths and digging deeper for more patience. Trying to be everything we can be to get through that moment.

He needs our love. Unconditional love. He needs to feel safety and comfort when he is near us. It takes time to make him feel safe. And, it takes time to make him comfortable. He needs everything to be just so. And, each day we arrange all of the pieces of our life to be just so. We arrange, and rearrange, and sometimes we wipe it all clean and start from the beginning.

He needs these things from us. And because he is our son, and because we love him with the deepest kind of love, we give him what he needs.

In too many moments we turn our attention from our typical son to address the needs of our son with autism. But our typical son has needs too. He needs love and support. He needs guidance. He needs moments of joy and silliness. He needs to feel safety and comfort. He needs from us. And we need from him.

He is growing up in a house that is not always peaceful. Many days he watches as his older brother throws things and slams doors. He sees us sweep up the shattered pieces of the broken things. He looks on with wide eyes as his brother pummels us in the head. Despite our best efforts, he see our tears. He watches his mommy and daddy fight to be stronger.  He cries and covers his ears as he hears the screams coming from his brother. Screams of sadness, screams of anger, and often screams for no reason at all.

In all of these moments I go to my youngest son. I hold him close to me and I try to explain things that I myself cannot understand. I tell him about his special big brother. I help him to understand how every person is different. How every person needs different things.

I tell him every single day how much his big brother loves him. I tell him to never forget that. To always remember the love. And, as I say these words to my two-year-old son, I take the opportunity to remind my heart of these words as well. It is all too easy in the chaos of the moment to forget that the anger and fear and sadness are the autism and not our beautiful boy. Love it the center of it all. We have to remember the love.

So I tell my youngest son that everything is going to be ok. And, I tell myself too.

I know that one day, not too far from now, I will sit down with my youngest son to explain just how special and different his big brother is. I will help him understand. We will talk about autism in a real way. We will use real words and real feelings to describe the presence of autism in our life. We will create a dialogue that is open and on-going.

My youngest son will have questions. He will want to know why his brother always gets the green plate. Or why he has to take the donut that is missing sprinkles on one side. He will question why he is asked to “trade” items that he is happily playing with when his brother changes his mind. He will ask why time and time again we leave an activity that he is enjoying because his brother needs to leave.

He will ask me these questions, and so many more. And, I will give him the answers that he deserves.

The truth is that I know I expect too much out of my typical son. I ask him to be patient and brave and kind. Strong. Stronger than any two should need to be.

He amazes me every single day with the power of his heart. I see the way that he loves his brother unconditionally. I see the way he rebounds from being pushed or hit. And, within moments he is resting his head on his brother’s shoulder.

Yes, I ask too much of my youngest son. But, he chooses to give it. To me, to his brother, to our family. Because his love is the purest form of love. Just a typical two year old boy who fiercely loves his brother. Autism and all.

An autism diagnosis is not an easy thing to process. When my two-year-old son was diagnosed with autism spectrum disorder I had no idea how to keep moving forward. I had no idea how to be the mom that he needed me to be. I had no idea what to think and feel. And, I had absolutely no idea what to do next.

In many ways I am still going through the motions and the emotions of the diagnosis.My son’s autism does not exist in a bubble. It is exists in our life. Our crazy, amazing, chaotic, sometimes-messy life.

And, there are times when it feels like the biggest part of our life. It is around us everywhere we go. We cannot out run it. We cannot outsmart it. All we can do is work  each and every day to be strong enough to survive it.

Believe me, I do not use those words lightly. I get that you may not understand why I would talk about my life in terms of survival. I get it, because I did not understand it at the beginning either.

At the start of this journey I did not understand the depth of pain. The emotional pain of watching our son struggle. The physical pain we experience trying to keep him safe from himself. The financial pain. The growing pain.

Autism is big. It should come as no surprise  that the pain autism leaves in the wake is big too. So, we process our pain. We process our pain over and over again. Sometimes we get done processing our pain, and then we start all over again. And then again. We will do this until is stops hurting. Because in my heart I need to believe that it will stop hurting one day.

After diagnosis I was different. I felt everything differently. I started to feel myself change. I was a passenger on a journey that I was not prepared for. A guest as a party that I did not RSVP for. A parent chosen for a life that I was not certain I was capable of. And yet, there I was.

In order to move past the diagnosis, I gave into the emotions inside of me. I let myself feel what I needed to feel. I hoped that if I felt what I needed to feel, then one day I might be who I needed to be.

First I felt fear. I felt confused and bewildered by so many things that I did not know.  I devoured every piece of information. I think this phase of my journey is best labeled “the Google phase”. I went in search of answers to my questions and I returned with even more questions.

Armed with too little information and too many questions I began to feel defensive. I looked for ways to disprove the diagnosis. I tried to poke holes in something that I did not even understand. Not because I needed my son to be anything different then he was. That was not it. I needed to be the kind of mom who could fix things for my son. And this was the first time I could not do that. I could not fix the autism away.

As the defeat set in the defensiveness became anger. This specific kind of anger is hard to describe. It is the anger of a parent; helpless and powerless to protect their child from something that feels very big. Something very real. Something very permanent. It is a crazy kind of anger. It is an anger that makes you kick and scream and demand to know “why?” It is an anger that slowly creates emptiness.

And when the emptiness sets in, when there is no more anger inside of you, the sadness enters.  The feeling of loss. The mourning. And all at once the sadness washes over you in a way that is both a relief and a burden. Relieved to be free of the anger. Burdened by the magnitude of the sadness. And then time passes and the sadness starts to feel normal, comfortable even. After a while you begin to accept that the sadness may never end.

But it does.

I learned that I had to feel the fear and the defensiveness, and the anger, and the sadness, and the loss.  Each of those feelings is a part of a much longer journey. The inevitable journey towards acceptance.  So I felt the things I needed to feel in order to be who I need to be.

This process is not linear. In many ways, yes, it is a progression. But the movement is not always forward. Sometimes I go around and around in circles. I spend a lot of time in acceptance. But,  I am often drawn back to anger and sadness and fear. They are a part of this never-ending journey.

So I journey back to those darker places from time to time. I stay there as long as I need to. And when I am done feeling what I need to feel, I fight my way back to acceptance. So that I can be who I need to be.

Autism is big. The pain is big. The sacrifices are big.  But the love is big too. The pride of watching our son progress is big. The feeling of accomplishment is big. The commitment is big. The future is big.

Autism is big. But, I am bigger.

JS

It would be easy to look at my life and feel sorrow over the things that I have lost. My parenting journey has been filled with pain that I was not prepared for. Loss that I did not expect. Not the kind of loss that you can see or touch. Nobody took anything tangible away from me. I lost things that I could not wrap my hands around. Things inside of my head. And, things inside of my heart.

After my two year old was diagnosed with autism I mourned the loss of the life I thought I would live. The vision of a picture perfect family. A family that could venture out into public without social stories and fidgets and anxiety.  I lost the ability to believe that I could control everything in my life. I lost things. Things that mattered to me.

Loss catches you off-guard. It stops you in your tracks. For a while it consumed me. That is, for a while I let it consume me.

And then one day I took a look around me and realized that nothing from my life was missing. I still had all of the things that I had pre-diagnosis.

My husband, my children, the roof over our head. The love and support of our dear family and friends. My faith. My fire. My strength. I have everything I need to walk this journey. And sure, some of the days are hard. Some of the days are difficult and painful. Some of the days question my strength. But, every single day I am surrounded by the people and the things that I need.

Too many people are not as fortunate. People lose things that are very tangible. Things and people that they need and touch and feel. They lose things that I cannot imagine losing. And, that kind of lose helps me to put my own loss into perspective.

People very dear to us experienced an unimaginable loss over the holidays. A loss that cuts to the core of parent’s heart. A loss that is both real and tangible. A loss that reminded me of all of the ways that losing something can make you feel. Sad. Confused. Angry. Bitter.

I looked to my friends expecting to see these emotions, but what I saw was something quite different. I saw two people with strength beyond the bounds of strength. With love and faith and patience and hope swirling around them.

Loss presents each person with a choice: bitter or better. My friends made a choice, they choose better. Not bitter.

I continued watching them in utter awe of their strength and faith. I found myself drawn to their strength. In fact, I felt as though their strength was helping me to process my own grief. And, in that moment I realized that I had my own choice to make in my own life.

I was living in the middle of bitter and better. And, I think that I had been living there for a very long time.  Many days I felt strong enough to choose better, but in moments of weakness I felt myself drift towards bitterness. So I existed in the middle. Unsure if I could every fully choose. Unsure until I drew strength from my dear friends and their unbelievable faith.

Better moves us forward. Better gives us strength. Better gives us the things we need to move on. For ourselves. And, for our children. Better gives us hope. It opens our hearts to love, love from ourselves and love from others.

Bitter keeps us stuck in one place. Bitter is all-consuming. It sucks the life out of everything living around it. Bitter drains our energy and our hope. It closes our hearts to the love that is waiting for us. Bitterness wins. But, only if we let it.

I will not let bitterness win. There is too much good in this world. In my family. In me. I will wear my choice to be better like a warm blanket. I will let my choice comfort me. I will let it give me strength. I will hold my recent reminder about loss and strength near to my heart. I will let it guide me down this uncertain journey. I will do that because I choose better. Not bitter.

JS

Lately I find myself in a bit of holi-daze thinking about all of the magical chaos that is Christmas time in the land of little kiddos. Our “to do” list seems to grow exponentially each year. Unfortunately, I cannot say the same thing about my energy supply.

December is a marathon and not a sprint. There are lights to hang, trees to decorate, holiday cards to order, stockings to stuff, shopping to do, holiday concerts to attend, Santas to visit, cookies to frost, presents to wrap, stockings to stuff, and not to mention a mischievous little red elf to be moved each night.

And, as I stop to recount all of the holiday chaos in my own life, I am reminded that I live with a little person with Autism Spectrum Disorder. And as overwhelming and chaotic as the holidays seem to me, I cannot begin to imagine what all of this must look and feel like to someone with a sensory processing disorder.

I am a fully-functioning adult with typical sensory reactions. And most days it is all I can do to keep my cool amongst never-ending crowds. I find myself distracted by the merriment of music and flashing colors all around me. I fight the urge to retreat from the chaos of each store that I enter.

The colors are brighter, the music is louder, and the crowds are bigger. There are people in costumes ringing bells. Stores are flooded with huge crowds of people with varying degrees of manners and patience. Everything around us comes to life during the holidays. It is equal part exhilarating and overwhelming.

Christmas is a lot for me. I think Christmas is probably a lot for most people. And, if Christmas is a lot for me, I can only imagine what Christmas feels like for my 4 year old son.

So, how do we manage Christmas and autism? The answer is quite simple, we do it carefully and with intention. We make conscious decisions each day to consider our son’s diagnosis. Celebrating an autism-friend Christmas does not mean removing all of the magic and joy, it just means turning it down a little bit.

We prepare. We talk to him and use social stories and movies to describe Christmas. We let him be involved in decorating. He watches us move the furniture and put up the Christmas tree. I put my beautiful glass ornaments on a shelf in storage and instead hang “shatterproof” ornaments that work in the reality of our home.  And some days our shatterproof ornaments are touched and tossed and rolled and dropped and kicked. And that is ok. We brought Christmas into our house in a way that works for all of the people who live there.

We accommodate: Our schedules are turned upside down a little during the holidays. At school they loosen the structure of the day to make time for holiday concert practices and festive arts and crafts. At home we are scheduled for more dinners and outings and family activities than usual. The business of it all is overwhelming. When we schedule for our family we ask ourselves one simple question “Is the best thing for us?” And, sometimes the answer is no. Sometimes even when the activity sounds fun we have to say no. Sometimes even when we have previously said yes we need to change our answer and say no. Not because we are a bunch of Christmas scrooges, but because there will always be another holiday party or festive show or family get together. We live our life one moment at a time. And, in each moment we make decisions that are the best for us.

And when we say yes we do more preparing. We bring our emergency bag of tricks. We control the volume and lights and crowds as much as we can. We deliberately arrive early when the crowds are small to give him time to adjust. And most importantly, we recognize the early cues to pack it up and head out.

We celebrate: The holidays would be easier from the comfort of my couch watching holiday movies in front of the fire place with hot chocolate. But there is just too much magic out in the world waiting for us. So we prepare and accommodate for a Christmas in the real world so that we can celebrate with our children. We are not willing to minimize our Christmas experience just because it would be easier.

And, we are hopeful that with each passing day the world outside of our home will become more sensory friendly. We are encouraged by all of the stores and holiday performances that held autism-friendly campaigns over the holidays. The greatest gift of all this holiday season is the notion that this wonderful magical world we live in is becoming a safer, more welcoming place for my son.

In the end, it is all about balance.

It is carving out precious moments to savor the magic of Christmas with our children. It is awareness of the needs of our children. It believing in things even if we cannot see them. It is being thankful for the joy in simple things.  It is teaching our children about forgiveness. It is worrying about presence first, and presents second.

Balance. Magic. Awareness. Belief. Forgiveness. Presence.

Because after all, that is what Christmas is all about.

Merry Sensory-Friendly-Christmas From our family to yours!

Jessica

I have come to learn that my parenting strategy is 60% intuition, 30% faith, and 10% dumb luck. Although, sometimes it feels a bit more like 100% faith. Faith in myself, faith in my children, faith in my support network. Faith in anything I can find to throw my faith into. And, other times this parenting gig feels a little more like 90% dumb luck and 10% red wine. (Well, maybe 80/20. Or, 70/30).

Early in parenthood I worried about getting it right all of the time. Finding the perfect balance for myself and for my family. Perfectly maneuvering each challenge along my parenting journey.  And then something really crazy happened; I kept getting it wrong. Despite all of my efforts to do the exact right thing, to be the exact right mother, I was still getting it wrong from time to time.

For a long time I let myself believe that this was a parenting flaw. I told myself that perhaps I was not enough. I needed to look deep inside to be more. To do more. To be a version of myself that always got it right. I just could not understand how all of the pieces of my life did not form the perfect puzzle I always imagined they would.

And, after feeling like that for a while I decided to give myself an amazing gift. I let myself surrender to the idea of the mother I thought I “needed” to be and I started to become the mother I actually was. I stopped worrying about getting it right all of the time and I started giving myself permission to make mistakes. I accepted that perfection was a moving target.  And, one that I was likely not going to reach.

I began to see the pieces of my life in a very different way. Maybe not the perfect puzzle that I always envisioned, but somehow in all of the perfect imprecation, all of the pieces still fit.

Some days my intuition fails me.  And, at times my faith has limits. I know that dumb luck as a parenting strategy is far from fool proof. And since none of my parenting strategies are perfect and without flaw; I give myself permission to do the best I can. To celebrate when I get it right. To recover when I get it wrong.  To be something less than perfect. To live a life that is great, even when it is messy.

There are a hundred moments a day that test my strength as a mother. I get it wrong way more than I get it right. I replay conversations from the day and I think about all of the ways I can improve them next time. I give myself permission to get it wrong, and I hold myself accountable to do better next time.

Because parenting is an evolution. It is being the best version of yourself in any given moment… considering any number of obstacles…amongst any number of limitations and hardships.

Parenting is trusting intuition. Parenting is having faith. Parenting is letting dumb luck knock it out of the park from time to time. And sometimes, it is pouring a big glass of red wine and saying “better luck next time.”

JS

Today I came across a photograph from our Christmas card in 2014. I sat for a moment and looked at the picture. I looked at my adorable baby Rowan, only 9 months old at the time. I looked at my little man Grayson, so full of life and love. Pre-diagnosis. Pre-labels. Pre-answers. Pre-interventions. Pre-all of the things that have rocked our world since that photo was taken.

I look at us sitting there on the front step of our new home. I see all of the hope and love on our faces. Our life was about to take off in ways that we had never imagined. Our journey as a family was about to grow wings.

Yes, we were a family in that photo. And yes, we were a family when we moved into that house. We were a family the moment my husband and I said “I Do.” And again each time we welcomed one of our beautiful little boys into this world.  But, in the time that has passed since that photo was taken, I realize now that we have become a family in a different way. A bigger way.

Our world is different now.  Different in ways I still do not fully understand. Not better or worse. Just different. Our life is different than I imagined it would be. And sometimes I feel guilty for feeling that way. Sometimes the word “different” feels like a place holder for words like “messier” or “challenging” or “filled with heartbreak”. Because the truth is that sometimes this life is messier than I imagined it would be. Sometimes our life is more challenging than I hoped. Often life is filled with heartbreak that I did not expect.

But this life, my different and unexpected life, is also filled with more joy and love and passion than I ever imagined. And if living a “different” life means living a life filled with happiness; then I am ok being different.

As I look at the woman from two years ago I am able to see her for who she was. She was a woman on the verge of the fight of her life. Her face is smiling in the picture. But, inside of her head she is overcome with questions and fears. She is questioning whether or not she is enough for the journey that lies ahead. She is fearful that she may not be the mother she needs to be. In this picture her oldest son is two years old. And, those first two years were very different than she imagined. She is unsure if she is up for it. She is not really even sure what “it” is. She is scared. She is filled with doubt.

You see, three months after this picture was taken that two year old was diagnosed with Autism Spectrum Disorder. At the time this photograph was taken that woman knew this was a possibility, but she never dreamed it would be her reality. The woman in the picture is slowly and methodically repeating one purposeful mantra in her head over and over. The woman is saying “this is a phase, and he will grow out of it.” That is what the woman told herself every day. That is what she needed to believe. That is how she put that smile on her face.

Somewhere along the way I became a woman and a mother very different from the woman in the picture. That mother was not strong enough for this journey. That woman was not brave enough to face all of the obstacles ahead. And slowly, day by day, that woman and mother became someone stronger. A mother capable of picking up the pieces and starting new each day. A woman steadfast in her pursuit to move forward. Today, I am that woman. I am that mother.

As our journey changed, I changed. Not because I wanted to. Not because I knew how. Not because someone forced me. I changed because my son needed me to change. My family needed me to change. And, I needed me to change.

Today I am no longer on the verge of the fight of my life, I am right in the middle of it. Each day we go up against things that scare the crap out of us. Every night we sit in our home and talk through all of the strategies and the interventions and the plans for the future. We put in the work every single day to keep driving our family forward.

After looking at the picture for a while I looked to a very similar picture from this year’s Christmas card. I see the mother I am today smiling in the picture. And, I know that the smile is different. This smile is not masking fear. This smile is not covering doubt. This smile is genuine.  This smile is real.

Today we have answers to so many of our questions. And sure, each answered questions opens up a million new questions. But we are moving, and along this journey any movement feels like progress. I may not be certain of every step I take, but I have certainty in the path. I have certainty in the journey. I may not be able to prepare for every obstacle that lies ahead of us, but I know that I am strong enough to navigate them as they come. I may not get it right every single day, but with each passing day I am becoming a person strong enough to keep going until I do get it right.

I needed to see that photograph this morning. I needed to remember who I was. I needed to understand who I have become. The price has been high. We have sacrificed relationships and time and energy and sleep. We have given a lot of things to this journey. But this journey is giving a lot to us. Each day I get a little bit more of my son. Each day he is a little bit more involved and active in our family. Each day we grow closer as a family through our love and our strength.

We will surely stumble. We will most likely take a few falls. We may want to give up.  But, we will not.

I wish I could have told that mother in the photograph that she was going to be ok. That she was going to be enough. That she was going to survive. She may not have believed it at the time, but she sure believes it today.

JS