From the time I was a tiny girl I have been passionate about living life alongside those who are different than myself, specifically individuals who happen to have diagnoses or “additional needs.”

During my college years, I grew to love the most wonderful man who God gave a passion to match my own.

Newly graduated from college and freshly married, my husband and I dove headfirst into the life we felt called to: parenting children who had severe medical or developmental disabilities.

While we felt that we would adopt sooner or later, we became just as passionate about minimizing the need for adoption as much as possible.

Through specialized foster care, we have the beautiful gift of caring for children with disabilities and partnering with families who need extra support to bring their children home.

It is an immense blessing to be on the frontlines as we see families reunited and able to carry on stronger and more supported.

However, reintegration is not always possible.

In those cases, we step into the role of becoming or helping to find an adoptive family for the children who need it.

When I was young, I certainly viewed adoption through rose color lenses. I saw adoption as a rescue and the greatest gift.

Thankfully, in the years just before and during the process of becoming a foster and adoptive parent, I was lucky enough to be exposed to so many more sides of adoption.

While I wish adoption could be neat and tidy and tied up in a bow, the truth is it is complicated. I am committed to allowing my views to be challenged and remembering my perspective presents only one angle.

Children who are adopted have families, cultures, genetics, and a million other pieces of themselves that must be remembered, honored, and fought for.

As a parent of children who have additional needs–including communication difficulties–I must strive all the more to make way for their story and perspectives to be told in their own words.

I refuse to assume that because my children are unable to ask certain questions and express specific grief and losses that those thoughts and wonderings simply don’t exist.

I cringe when people comment about how “lucky” these children must be to have been adopted by us.

These children lost their first families—that is hardly lucky.

My children love our family and are thankful to be here. But they also love and miss their biological families.

My children have every right to feel thankful some days and overwhelmed by grief other days.

Adoption can be beautiful. Adoption also means great loss.

Some people believe that my children are extra lucky to have been adopted because of their medical needs.

This belief breaks my heart and turns my stomach. My children are human. Simply human.

Their identity is formed by endless aspects and their disability is not at the top of that list.

Just as their disability is a single piece of who my children are, so is their biological background—in fact, I believe it is a much greater piece of their identity than their diagnoses are.

As an adoptive parent, I am not a savior.

Adopting children who have medical needs does not make me special or amazing.

A need arose that my family was able to meet and so we did that.

Does adoption have beautiful benefits and blessings? Absolutely.

Is adoption necessary and best sometimes? Of course.

But the most beautiful things are hardly ever one-sided or simplistic.

Dear One,

So many days I cringe at the words I know you hear spoken to me in an attempt to pat me on the back or applaud the life we live.

“You foster and adopt kids with special needs? What a hero you are!”

“Do you ever sleep?”

“You are superwoman for caring for these children!”

I cannot imagine how it feels to constantly have the privilege of loving and caring for you compared to the work of a superhero.

I know you hear these comments, but I pray you hear my replies even louder:

“I am not a superhero at all. Just a mom.”

“I would choose this life over and over again.”

“I’m not really sure what you mean. I am honored to be a mom.”

“I am not special. I am simply doing what a parent does.”

My precious child, do you know why I do what I do?

I do it because I love you.

I do not do the work of a wizard or a hero or a saint.

I simply do what a parent does.

I do not advocate for greater inclusion for you, my child, because I believe your teacher needs more on her plate or because I get some kind of thrill by stirring the pot.

I advocate because you deserve to be seen, respected, and included.

I advocate because that it what a parent does.

I do not wake before, during, and after the midnight hour to give medications, reposition, and comfort you because I am immune to exhaustion. I don’t push through weary days with a smile on my face and joy in my heart because I thrive off of sleep deprivation.

I find joy in the tired days because being with you is delightful no matter how l feel.

I sleep a little less because you need me to.

I place your needs above my own because that is what a parent does.

I do not take the time to meet the stares of others with the sharing of your name and strengths because I have no urge to punch ignorance in the face sometimes. I don’t choose to speak up against discrimination, inaccessibility, and unkindness because I enjoy confrontation and heated conversations.

I speak on your behalf because I know you, adore you, and respect you, and others should too.

I voice my opinions because they teach others to see you for who are.

I educate because that is what a parent does.

Sweet child, I don’t hold up an entire doctor’s office while you use eye gaze communication to choose between twelve colors of casts because I think making others wait is a fun hobby. I don’t make extra space in my day to allow for you to have all the time you need to use your unique voice because I don’t ever feel rushed or short on time.

I choose to give your voice a platform because your thoughts matter, even though they take more time to be heard.

I choose to let you choose and speak, even when it would be easier to do so for you, because you are a human with a voice worth hearing.

I hear you and make others listen in because that is what a parent does.

I don’t hoist you and your equipment into the van multiple times a week, bustling to appointments and therapies because I have superwoman muscles or favor the interior of doctor’s offices.

I push you to grow stronger, healthier, and greater because you have great potential that deserves to be acknowledged and encouraged.

I seek the best doctors and therapies for you because I want you to feel and be your best.

I seek the best for you because that is what a parent does.

Do I make sacrifices for you? Yes. Do I get tired sometimes? Yes. Do I wish it were easier some days? Yes.

Do I ever doubt that you are worth it? No. Do I ever regret it? Not for an instant.

My sacrifice has nothing to do with the diagnoses you have been given or the challenges you face. Instead, it has everything to do with your worth …your humanity …and the incredible privilege it is to be your parent. It has everything to do with who you are and how greatly I love you.

Oh how I love you.

I love you because that is what a parent does.

Love,
Your Parent

My husband and son competed in a marathon recently.

They trained hard and raced harder, crossing the finish line after 26.2 gruelling miles within a single second of their desired race time.

As a wife and mom, I thought my chest would burst with pride as I screamed and cheered until my face was beet colored and my voice like sandpaper.

To some marathon competitors, organizers, and onlookers the feat that my son and particularly my husband achieved was even more extraordinary than simply running for over twenty six miles.

Did I mention my son is only six years old? He also happens to be unable to walk due to a medical condition that has taken his ability to move his body or speak.

My husband ran the race pushing my son in a jogging stroller.

Throughout the course of the race, my husband was met with many comments about the “easy” role my son had or wonderings about how my husband felt in regard to bearing the brunt of the hard work.

While it may have appeared that my husband was working harder than my son, that was far from the case.

In their defence, what people saw was a man running a marathon while pushing more than sixty pounds of child, stroller, and equipment.

However, what they didn’t see were the months before the race when my husband would not have risen from bed to train in the wee hours but for the shrieks of my son calling out to him and reminding him of his commitment.

Onlookers didn’t see the training runs when my husband ran many miles farther than planned because my son’s persistent squeals of delight and encouragement urged him onward.

Fellow marathoners didn’t see my husband doubled over with cramps at mile fourteen of the race when he caught my son’s eye and they together chose to push on through their pain.

Those on the outside couldn’t see the eyes of my son meeting his daddy’s eyes mid-run, uplifting him and spurring him on when exhaustion set in.

Very few see the incomprehensible pain my son experiences during and after being taken for runs and the way he chooses to race time and time again despite his knowledge of the horrific pain he will experience

My husband and son have very different roles when they run together. But they do not have uneven roles.

I am so proud of my son and husband for competing in a marathon.

However, I am just as proud of my children who do not battle debilitating medical conditions when they work hard and achieve their goals.

The reality of my boy’s diagnosis has taken so much from him. But it will never rob his ability to think, to feel, to connect.

He is as capable as anyone of setting a goal and working to achieve it.

If I were to set him on a pedestal or rank him in a special category of hero simply because he has a disability, that would discount the reality of who he is, what he thinks and feels, and what he works so hard for.

As much as I want to say my husband and son are the only true winners of the race or that their determination makes them heroes, I know that isn’t true.

Months ago, my husband and son set a goal. They worked and trained incredibly hard.

Both of them brought their strengths and weaknesses into the light and worked together to become a magnificent team.

Then, they achieved the goal they trained so hard for—together.

Does that set them apart? Does it make them exceptionally brave? Does it make them inspirations and heroes?

No. Not any more than any other competitor who ran the race that day.

Not anymore than the rest of us who run our own race, face our own fears, feel our own pain, and achieve the prize our eyes are set on.

Dear Sir,

I heard you refer to my children who happen to have some additional needs as: Kids like that.

In fact, I have heard these words tucked within tainted opinions multiple times when referring to my children, their classmates, or other individuals who have additional needs.

“You must be such a special person to adopt kids like that.”

“What’s the life expectancy for a kid like that?”

“I would never take a kid like that on vacation.”

“I’m just not used to being around a kid like that.”

I can’t quite know what you mean when you use this phrase that attempts to define my children and categorize them with pre-determined worth and purpose polluted with dashes of ignorance and close-mindedness.

Therefore, I must ask: Are my children truly kids like that?

To answer this question I must pose a different question: Kids like what?

If by kids like that you mean individuals who are as beautifully unique as each crystal snowflake that graces the earth with its glorious presence….then yes.

If by kids like that you mean abundantly brave warriors, thrown into the midst of battles they would never choose but navigate while still spreading kindness like confetti and hope like rays of the sun….then yes.

If by kids like that you mean children who often understand the most important things, who are unafraid to cry when life is hard, laugh every chance they get, and love loudly…then yes.

If by kids like that you mean humans beautifully and wonderfully knit together by the hands of a good and creative God…then yes.

If by kids like that you mean the little ones who have grown their mama in endless ways and added every kind of color, magnificence, and meaning to her life….then yes.

If by kids like that you mean the ones who remind me each and every day to extend grace and unconditional love to “people like that”—people like you—who use words as daggers whether knowingly or not…then yes.

So yes. I suppose my precious children are kids like that.

I will always fight for my kids like that.

And despite your ignorance and lack of tact, I will fight for you—the “people like that”—too.

By people like that, I mean people who sometimes say really cruel things.

By people like that, I mean people whose ignorance has deeply cut the hearts of my children and me.

By people like that, I mean people whose own experiences have shaped their hurts and their need to lash out.

But by people like that I also mean the people who are worthy of the grace and understanding I advocate for toward my children.

People like that who are human.

People like that who are worthy of unconditional love.

People like that who are still created by a good God and gifted a unique personhood and purpose to pass on to the world.

The truth is we are all people.

People just like that.

Sincerely,

Mama of the kids like that

As a foster and adoptive mom to precious little people who have medical needs, I never know what the story will be when I answer a phone call from a social worker.

Our team knows that not much can shock or scare me away. And yet, the hesitance in the voice on the other side of the phone is always deafening before I hear these words: “…But there is something you need to know: The child is terminal.”

Terminal.

The very word used to twist my stomach to a nauseating churn and my cast my mind into a worried net of tangled fears and crushing what ifs.

Terminal.

Terminal means loss and heartache and fear.

Terminal means life is hard and quite unfair.

Terminal means pain is real and love can’t heal all.

Terminal means limited days.

Terminal means death.

The word still makes my heart skip a beat. The label sometimes accompanies a horrific and dark reality. And yet, I am learning that the word terminal is often times simply that: A word.

Doctors know so much. But they don’t know everything.

Medical diagnoses can be very accurate. They also can be completely wrong.

A body can fail very quickly. Or it can fail very slowly over many years.

Terminal wants me to spend my days afraid.

Terminal wants me to feel time slip through my fingers.

Terminal wants to tuck sickening thoughts of death into every corner of my mind.

Terminal wants to turn the sweetest days tart with the bitterness of looming loss.

Terminal changes everything.

But terminal also changes absolutely nothing at all

The gut-wrenching label makes no difference in the way I live life alongside and love my children—all of them.

When I hold these precious bodies close to my own, it is rare than I think of death.

When I child arrives at my home labeled terminally ill, the first thing I do is hold that little one close and peel that label off—every last sliver of it.

I look into precious eyes and I speak the truth of life over a soul more precious than I can comprehend: “Look at you! You are so beautiful and full of life! God is working such amazing wonders in and through you. Your life is so meaningful and so abundant. I am so thankful to have you in our home living life with us.”

Life.

Days are limited for all us. Life is laced with unknowns.

My children who are well are held just as preciously as my children who I am told have numbered days. The reality is that we are all terminal.

None of us know the number of our days or when tragedy will come knocking. But each and every day, we have the choice to choose life and life abundant.

We can decide to lay aside fear and double-fist the very moments that make life what it is both in beauty and heartache. It

is up to us to treasure the souls around us and spend every minute messily navigating the days that are gifted to us, no matter the number. It shouldn’t take a label of impending death to make us choose to live.

Some days, I can barely cope with the harshest of realities I know families face. Thoughts of children with small numbers of days and parents with empty arms leave me overwhelmed with grief and anger.

Terminal is a powerful and influential reality.

Terminal is one of life’s greatest teachers.

Terminal tells me its ok to sit in the hurt and choose not to be brave some days.

Terminal reminds me to not go to bed angry.

Terminal beckons me to laugh at mishaps and dance in the rain.

Terminal whispers reminders of the shortness of life and preciousness of each hour.

Terminal tells me to lay bitterness aside and choose kindness over comfort.

Terminal, though rooted in expectation of death, highlights the beauty and preciousness of life.

“Dad! Look at the kid! Ugh! Why does he look like that?”

My face turned hot as I whipped my son’s wheelchair to face away from the speaker. I turned my ears to the little boy and his father behind me, frantically willing the parent to grasp this teaching moment. Instead, my heart sunk as the man uttered a quick, “Yep” and hurried his boy away.

Angry tears stung my eyes and I struggled to swallow the lump growing in my throat. I knelt beside my boy and kissed his cheek.

His sweet eyes met mine and I whispered, “Don’t worry buddy. You are amazing. That dad and his boy really missed out on meeting you.”

My son’s face spread into a grin. “How are you always so nice?” I asked him. “I want to punch people. You forgive them and keep smiling.”

He smirked again as I gave his soft cheek one more smooch and wheeled him to my husband so I could take some time to sit and cool down.

As I re-played the events of the morning, I began to remember time after time when my son, as well as my other children with special needs, has endured cruel stares, comments, and interactions.

“What is wrong with him?”

“Well it’s not like he would even appreciate having greater quality of life.”

“How can she do school? It’s not like she can earn grades like other children.”

“You are adopting children with special needs? But what about vacations and holidays?”

“She creeps me out.”

“Is he going to die soon?”

“You are such a saint for caring for children like that.”

“You are going to take him/her on vacation too? Um…wow.”

“What is her lifespan?”

“Why is your kid so scary looking?”

“We didn’t include them because we didn’t know if they would want to be included.”

I could go on and on.

So often, my darling children have been overlooked, underestimated, and either unseen or too seen.

They have been straight up ignored. They have been treated like burdens and regarded as inconveniences.

While I realise that these interactions can be birthed from ignorance, inexperience, and even a messy but genuine effort to acknowledge my son’s existence, I always come to the conclusion that if people were willing to contemplate what they say and do can be received by others, the world would be such a better place.

As I replayed these painful memories in my mind, I asked myself what the answer was.

One thing that makes me livid faster than lightening is my children being treated unkindly.

Sometimes, I have responded to unkindness solely from my anger. I have returned rude comments with harsh words and inconsiderate stares or cold looks. Did these instances ever bear fruit or change on behalf of the offender? No. Not really.

Today, as I reflected on the radiant smile of my son and the endless grace, he tends to give others, I felt the answer was clear: the most powerful response to unkindness is kindness itself.

While rage may cause others to back down or feel shame, the times that I have seen change and teachable moments are the times when I have returned even the most horrific comments and stares with warm greetings and friendly introductions.

Anger and lashing out push’s others away. While at times that seems to be the easiest solution, my heart’s desire is to bring people together.

I want to be a creator of inclusion not isolation. I want others to see the amazing gifts and worth of my children, not the grizzly teeth of their mama bear.

If I truly believe that discrimination and unkindness must end, then I must be willing to lavish love on everyone around me. Everyone.

The very reason I am so defensive of my children is because they are human—humans who are magnificently created and inherently worthy of being seen, respected, and loved.

If I believe those things to be true of my children, then I also must believe them of all who are simply human and therefore deserving of abundant grace and kindness unending.

Here we are again. Waiting. Waiting. Waiting.

What will the news be today? Will we hear of hope we have ached for? Will we learn of findings I cannot find the strength to consider?

Perhaps there will no answers at all but a million more questions, yet another referral, and more waiting. Waiting. Waiting. Waiting.

Beside me, the nervous tapping of a mother’s foot as she holds her baby close hammers into my anxious thoughts.

Our restless eyes meet one another and still just long enough to share a sympathetic look and tight smile. We don’t have to know each other. We just know.

I silently plead with God for good news for that mama today. And we wait. Waiting. Waiting. Waiting.

I take a deep breath more audibly than I had intended and shift in my vinyl seat. My sweet boy snoozes beside me.

I am so thankful for his rest and escape from his mama’s nerves. I look around the room and allow myself to take in each person who sits and waits—some for good news, some for bad.

In my mind I start to calculate the number of hours I have spent in waiting rooms the last week….month….year…three years. Whoa. Too big of a number.

Will I ever be done waiting? Waiting. Waiting. Waiting.

But slowly, a realization slips into my mind and grabs hold of my heart.

Time is precious. If I must spend hour after hour waiting, I must wait well.

What if a waiting room became a place of mundane miracles and human connection instead of anxious hearts and racing minds?

No longer will I allow these hours within the waiting room to be defined by slavery to the minutes ticking by and thoughts of terrible news.

My eyes fall on a couple in the corner struggling to manage the behavior of their child who has additional needs.

I dig in my purse for a scrap of paper, grab a pen from the front desk, and jot a note in penmanship that reveals my nerves in shakes and quivers: “Hi! I am fellow special needs mama and just wanted to tell you what an amazing job you are doing. Your love for your daughter is radiant. I know there are so many hard days. I don’t know you but I am for you. God bless you.”

From that day forward, the many waiting rooms I find myself sitting in became places to spread hope, unity, and kindness no matter the relief or heartache that await us.

I no longer simply wait. I write encouraging notes, I start conversations, and I hear people’s stories.

I go out of my way to make my little ones laugh and take minds away from the fear of the wait.

Just like that, the waiting room lost its grip on me.

It is no longer waiting…waiting…waiting. It is loving…laughing…living.

When it comes to the miracles that take materialize in the mundane every minute matters.