When Godly Men Hate the Disabled:Transforming the Church by Godly Example

Behold, the North American Church: simultaneously known as loving and hateful. Nearly every Christian I know has a painful experience that left them feeling rejected, unloved, or held to an impossible standard.  Most also have tales of authentic people who loved them well and pulled up a chair for them at the Holy Table.

Which Bible character comes to mind when I mention distaste and hatred for the disabled?

Pharisees, perhaps? Those guys seemed to hate everyone and kept impossible standards. Maybe the Old Testament Israelites with endless rules who wouldn’t let anyone unclean into the temple? Certainly.

The character I think of may surprise you. King David. Yep, the king who was a man after God’s own heart.  In 2 Samuel when David is about to set up shop as king, the Jebusites deterred him by putting the blind and lame at the gate so he could not enter without defiling himself. 2 Samuel 5:8 reads: And David said on that day, “Whoever would strike the Jebusites, let him get up the water shaft to attack ‘the lame and the blind,’ who are hated by David‘s soul.” Therefore it is said, “The blind and the lame shall not come into the house.”

Woah. A man after God’s own heart HATES the lame and blind in his  SOUL? Those verses pierce my heart. Considering the list of David’s other sins– pride, adultery, murder, ignoring his daughter’s rape… this man is supposed to be after God’s own heart?! How on Earth?!

The answer is David’s sinful perspectives always change. He turns his eyes and heart to the Lord, repents and transforms. Sin requires a Savior, and David is delivered from his hateful prejudices. As God often does, he uses relationships and those David cared for to change his heart. David’s closest friend, confidant and brother-in-law was Jonathan. When King Saul and Jonathan are killed in battle, David is deeply grieved. Years later, David asks if there are any of Jonathan’s descendants that he can bless. Jonathan’s son Mephibosheth is brought into the palace to meet David… at which time David realizes Mephibosheth was dropped by his nurse while fleeing and both feet were crippled when he was five. David could have given him gifts or even let his family live in the palace, but his heart changed. He commanded his leading servant, Ziba who was to inherit,

“And you and your sons and your servants shall till the land for him and shall bring in the produce, that your master’s grandson may have bread to eat. But Mephibosheth your master’s grandson shall always eat at my table.”

2 Samuel 9:13: So Mephibosheth lived in Jerusalem, for he ate always at the king’s table. Now he was lame in both his feet.

Somehow David’s deep love for Mephibosheth overpowered his bitterness, hatred and past actions for the lame. He saw a PERSON more than he saw the disability. The King pulled up a permanent chair at the Royal Table for someone who was once kept from his house. How remarkable that two blind men cry out to Jesus, “Thou Son of David, have mercy on us!”

I read the Bible with a different perspective now that my two sons have disabilities. 3,000 years ago, I would not EVER be able to enter the temple to worship the God who made my children as he saw fit- in his own image yet different.

The Church and I have had a tumultuous relationship. Several years ago my son’s sensory issues and then my younger son’s cancer prevented me from coming to church and worship freely. I left discouraged and dejected, firmly grasping tiny hands and leaving  before worship ended. I learned why 90% of people with a disability in their family do not attend church, even when they want to come. They feel like the church cannot handle our children.

Jesus spent over half of his earthly ministry with ‘the disabled’. Like David, he consistently ‘pulled up a chair at his table’.  Ziba was to inherit, but instead served Miphibosheth until his death, when Ziba was given the inheritance he expected. Church, we can be Zibas. We can scoot over at the royal table, prepare and share our blessings and honor the disabled who still believe they aren’t able to enter the King’s House.

My sons’ most influential disability is the same as mine: A SINFUL NATURE in need of the Savior.

For this reason, I am now dedicated to launching, developing and strengthening inclusive ministries wherever God takes our family. My sons won’t be kept from the King’s House and the Lord’s table because of their disabilities if I can help it. They are fearfully and wonderfully made in his image. WE must transform how the church engages so that our hearts can be transformed and turned toward Christ together. Jesus commanded us to go out and bring people to him.

There is a place at the King’s Table for us all. Pull up a chair and pass the salt. We have a harvest to bring in.

My First Teacher Note This Year

Mrs. B,

Thank you for your notes in the Communication Folder. I am glad some reading, counting, and art skills were demonstrated in the three chaotic hours you were given to herd cats… er, educate and get to know your kindergarten students today. In response to the note that he screamed a lot in protest and hit you when transitioning from play time to work time, let me say:

WHAT IN THE WORLD?! Here you get a new room and student list the week before school and are gearing up for all the usual issues, adding on students with learning difficulties?!  You come in ready to change the world one mind at a time by believing in these little underdogs and leading them to be their best selves… and you get screamed at and maimed?! You aren’t a zoo keeper in charge of the  honey badger exhibit! Worse- MY KID was the culprit.

For the LOVE! You’ll be sitting with your husband tonight at dinner (hopefully take out) and casually say, ‘Hey! I was screamed at all day and only got hit a few times by a few kids, but at least no one barfed or tried to pee on the 5th grade lockers!’…and you will probably actually think it is a good thing. I know this because you smiled and said, “I’m USED to it” and “it’s new for him”. Then you said he is actually very smart and sweet!

Okay. You are a teacher. Your options for discipline are limited. Personal safety, comfort and sanity are limited– more so in your class! Detention, extra laps, extra homework, suspension… these aren’t plausible options for the kindergarten kids with extra challenges.THANK YOU for not being the teacher who crosses her arms and declares that if we don’t get our act together he will end up in prison. (Like…most of the the Apostles, MLK,  Nelson Mandala…etc.)

As for the consequences…I literally dragged him home wrapped around my leg. I did this trying to push a stroller, walking behind a mom who was trying to ignore us,  with a perfectly dressed daughter who was joyfully telling her all about the day. Example modeling! Except he didn’t notice the example of the Student of the Year.   I firmly explained it is unacceptable and reminded him of good ways to calm down. I made the ‘good behavior= rewards’ chart, hugged him and told him we would try again tomorrow, and then reminded myself that tomorrow is another day.

I wish the hard moments could be a montage that goes into the time where he is greatly succeeding and blowing expectations out of the water… but until then THANK YOU for doing the hard work of teaching, redirecting, and meeting our kids in their icky places. It’s life-changing. Until then, expect more encouragement and back-up while we do the hard work of raising up a generation of great kids.

Tomorrow is another day. I believe in you.

-The Mom of the Kid Who Had a Rough First Day


First Day of School Olympics

Surely I’m not the only one who imagines her life as if it were a movie trailer. It’s the first day of school. For some moms their trailer for today would have a horror motif.  For some, it is a Hal-Mark ‘coming of age’ movie, heavy on the sap. For others, it is “How Momma Got Her Groove Back”.

Today I sent my son to kindergarten. This afternoon, my 3 year old ‘chromosomally-enhanced’ leukemia survivor will go to Pre-K. Meanwhile, the 2016 Olympics dominate televisions worldwide. Thus, today’s movie trailer is cool, speedy and has  an Olympic theme… a la Cool Runnings. We stand out like a Jamaican bobsledding team.

The fact is, what many families do naturally can be herculean tasks for us. We’ve had thousands of hours of therapy, practice, training, doctor’s appointments and pep talks to get to this moment.

Today we walked the stroller up into a crowd of parents, students and teachers and prepared for the day. Much like these athletes, by the time we get to what we have trained and worked for, we are ready. Excited. Confident.

Frankly, it was a tiny bit of a mess. The heat and humidity killed the hair styles. My child’s teacher and para-professionals weren’t there. No one knew where he should go because his room was not on the kinder-hall, but with the 6th graders.

I laughed. Really. My kid was knocking on the doors and trying to sneak in with the 6th graders. I ultimately let another teacher take him by the hand to deliver him. There wasn’t a goodbye, a wave, or anything. We were ready and confident because we had our crowd.

These athletes are surrounded by cheering fans, family, coaches and their flags. I envisioned the many doctors, therapists, family members, friends… all those who helped us learn new words, how to eat, how to crawl, how to take steps, and how to read sight words.

We all need to be reminded of the good others see in us. It’s hard to argue with a motivational speech from Yul Brenner. (” I see pride! I see power!..)

The fact is, you can look at a school and pick out kids who don’t seem like they ‘belong’, whatever that means.  30 years ago, keeping them home or in an institution was the usual course of action for a child with Down’s Syndrome. Instead we are facing challenges head on and defying the odds.  However, in the Olympic games we call that “A Cinderella Story”.

Yes, there are those who excel and dominate at school. Academia is the wheelhouse in which they thrive and I LOVE that.

My Team… well, we are easy to spot. We are often underdogs. We sing a lot. We aren’t polished. I am Mom. I am the coach. I get us out of our comfort zone and figure it out. I cheer like a fool when we qualify and do the basic things.

This time last year, infections and scars from cancer were a primary concern and school was not an option until after Christmas.

This year, my William the Conqueror walked on his own two feet and started a new stage without me needing to push.

I sure hope your kids get to interact with kids like mine this year. I’d love to high-five you in the pick-up line and cheer that no one threw up, peed out or cried on the way to school (and that was just the moms!)

We can do this, Y’all.






Magic Always Has A Price

About fifteen minutes ago I put William in his crib and turned to retrieve his toothbrush for our nightly routine. As I turned he called, “No weeve me!” (No leave me!)

I paused for a moment to make sure I processed those sounds correctly and took a deep breath as I soaked his tiny toothbrush. Images of him sleeping in a hospital bed as he received chemotherapy at 9:00, 11:00, 2:00, then 4:00 blood draw and 6:00 morning rounds flooded back. About two minutes after his teeth were scrubbed he rolled over, put his tiny thumb in his mouth and snuggled into bed. I was grateful that he knows I won’t leave. I was even more thankful for my Father who promised never to leave or forsake me. Then it occurred to me that as far as the blogging world goes, I have left you for a few months. Many of you are following the latest happenings on William’s Warriors’ Facebook page and are encouraging us in person, but as far as the bearing of my soul goes, I apologize for the silence.

To help you understand why, picture this: You have waited for years for a grand opportunity to see something amazing. When you finally encounter it, you don’t want to miss a moment. Imagine walking through the Louvre and turning to cut-up or scroll through Pintrest- not likely. Everyone is instead enthralled. You wouldn’t stare at the heavens through the Hubbel Telescope and take frequent breaks to text or check e-mail. No, in that moment your eyes and heart are occupied.  Lately as my precious sons are meeting milestones I have waited YEARS for, I am otherwise engaged.

William began his first days of school this week. He goes in the morning while Jonathan goes in the afternoon.  For the first time since Jon was 10 months old, I get to spend time with JUST him.  Missing these precious moments in his first few years were a sacrifice I simply had to make. Over and over the teachers, ‘experts’, etc.  told me that these trials were making him resilient. They did. They also wounded him MIGHTILY.

Many of you don’t know, but Jonathan’s neck was wrapped in the umbilical cord during birth and he lost oxygen for quite a while afterward. The MRI shows evidence of it. He has faced delays, particularly in communication. This year he was diagnosed as on the Autism Spectrum. While battling William’s diagnosis and difficulties, I watched my firstborn change and shrivel away, as many kids do when a child with difficulties enter the family.  Now that we are a united family, Jon has SURGED ahead. The quiet child of the past is speaking in sentences, obedient, learning and very helpful. The terror of the house is finally a JOY to me.  It was a LONG time coming. He is finally getting to be the Jonathan that was always in there. He is friendly, compassionate, helpful, and loves to laugh, cuddle and read. Moreover, he once hated school and church. Now he ASKS to go and prays aloud often. The child who ignored his brother and clearly demonstrated resentment now cares for him, gives high fives and looks out for William. The hopes of my heart are unfolding in front of me, dispelling the fears that it was not going to happen.   Great difficulty is ahead, but seeing this child often feels like MAGIC.

There is a popular show on called Once Upon A Time that many of my friends watch. A key phrase in the show is “Magic always comes with a price.”  The price of hours and hours teaching a child to walk is an unspeakable joy when he stumbles into his first steps. To hear your child pray, bid you goodnight and tell you, “I love you Mommy!” when he barely spoke for three years is the price of hours of speech, thousands of tears and lots of difficulty is better than magic. To gain the extraordinary, the cost will also be more than a typical cost.

To gain hope, joy and a peace that I will be carried through anything cost me letting go of the hopes and dreams I had for my life. I now dream new dreams. I’ve had to decide that my desire for an amazing God-written story is more than my desire for comfort. That decision is one I have to make daily.  The price is high. To gain everything you have to give everything. To gain your life you have to lose it first.Most parents who have kids with special needs, illnesses and challenges will tell you what they gain outweighs the cost and that it is worth it– and it is– but the price is also very high, my Friends.

Forgive me for remaining quiet as I watch my babies grow, learn, play and take hold of all God prepared for us; I am sure you understand. I’m watching miracles happen in my house. That’s even better than magic.






A Letter to Our Oncologist One Year Later

Dearest Dr. Thompson,
One year ago this week, William and I met you, thinking all was well. I’ll never forget you saying how important it was to you that we know you “give a damn about your kid. He isn’t a patient. He is William.” In a world where people rarely see William without seeing Down Syndrome, those words hugged my heart and let me know my son was safe in your care. Relatively speaking, his six month treatment was short and technically uncomplicated but you know that our lives are forever changed. You didn’t want to tell us over the phone; you couldn’t see us looking at each other and holding hands while speaking to you on speaker-phone. You didn’t get to see our faces or watch us hold each other and silently cry the way I did when I was told he may have Down Syndrome. You couldn’t see how your calm manner helped me process and focus as you confirmed what I knew to be true. That must have been hard for you, and I’m sorry. You were so confident and comforting that I was ready and eager to drive to UNC that Tuesday morning.
I find myself missing the familiarity of UNC; all my senses were heightened and the details that are written on my heart may amaze you. What I miss most is the family that you helped create. On our first day, Bowtie Tuesday began. Under your care he learned new words and how to fist-bump. He learned to sit up, to crawl, and to love Taylor Swift. I watched his personality and his body grow. I began to see who William is in those 5 hospital rooms, and you always celebrated the victories with reckless abandon. The nurses and other doctors were his team and you were our coach. A great coach brings out the potential and stands back. You did that for us every week.
You saved William’s life, Patrick. You helped keep our hearts soft and loving in the process.
I think people forget that you are a ‘real person’ too. You have rough days at work, sit in the same traffic, go home to a family and have to keep the details of all your patients’ numbers straight. You did it with grace, but I really treasure the day you came into the room at 5:30 and said, “I’m really tired. It’s been a hard day. Can we save the excitement and full plan for tomorrow after I’ve slept?” Your humanity makes you a great healer.
I have no doubt that you loved my William greatly; as you do each of your patients. You made us feel like he was your absolute favorite and the VIP of the 5th floor.

Now with William sleeping in his bed, unhooked from IVs and with only scars to remember Broviacs and G-tubes, I find myself in the same dilemma as many parents before me. How do you adequately thank a doctor who led your family through cancer? I think the answer will come every time we look at William do something new or change a heart. You played a part in it and can proudly say, “That’s one of my kids.” Thank you for turning an underdog into a Conqueror. Thank you for introducing us to a world we didn’t know we existed and guiding us through it. Thank you for your care, your love and your wisdom. Thank you for teaching me ‘we don’t pay our bills’ and how to turn off the pumps at 2 a.m. Thank you for keeping the dance parties going and for shooting straight. Thank you for keeping us dancing and laughing. Most of all, thank you for being a crucial part of William’s story. Thank you for being used by God as an instrument of healing. If the beginning is this powerful, I can’t wait to see how amazing his life will be. Thank you for helping William conquer. IMG_2977
IMG_3907last chemowilliam letter

With a mother’s appreciation and gratitude,
Kaitlin Erkkila

Moms– About the Grocery Stores… Let’s Change Them.

Most moms know that mixing kids and grocery shopping is much like mixing Pop-Rocks and Coke– not a good idea if possible but it gives everyone something to watch.

Recently a group of moms and I were in a waiting room and discussed “The Gauntlet”– the 20 feet of check-out that traps our children within arm’s reach of candy, Elsas, Lightning McQueens and especially THE MAGAZINES. One said that her reading, school-aged girls had questions about divorce and if “the best sex tips” would really “snare a guy.” Another mom mentioned that she avoids taking her pre-teen sons specifically during the Swim Suit editions. “I’d drive out of my way to go to a store with healthy options that didn’t use my kids against me or shove airbrushed boobs into my face” one mom said. These are important ‘teachable moments’, but when we are desperately racing against nap time to get toilet paper and bananas, we don’t want to help our kids keep up with the Kardashians. We all know that these images and expectations are negatively impacting our society.

No amount of shielding will keep our kids in a bubble and they do need to learn how to handle life in this culture. These are important conversations and we all know kids will learn.We all complain about it and frankly, it isn’t going away. If we didn’t buy the magazines, the candy, the toys, etc. it wouldn’t be sold. This isn’t about morality… this is about capitalism, pure and simple.

Today I’m not wanting to address the greed of kids, differing parenting approaches to melt-downs, or the junk food. No, it is accepted that the grocery store is carefully designed to separate us from our money with all the advertising genius possible. No, today I had a friendly and delightful conversation with a grocery store manager and told him about the Mom-Council.

I suggested that they open an aisle or two that are kid-friendly. Either put the magazines in stand where only the very top titles are available and tabloids are hidden or put them in only a few aisles. I know I would stand in line for an aisle without magazines, candy, or toys. Would you? If not, fine. No judgement here. The manager actually agreed and mentioned that at overseas military posts and bases the magazines were not in the commissaries (grocery stores) but were put in the Class Sixes, where the booze is sold. The items are still sold but moms get a reprieve.

If the moms aren’t buying the toys and candy, the stores lose money. What’s the incentive? Well, I want to hear from you, Parents. What would you suggest? If every mom I know is at least mildly annoyed by this, can’t we change it? No wonder Amazon Pantry and the grocery pick-ups are growing in popularity.

What are your ideas? I’m interested to see what the brilliant molders of the next generation can come up with.

Noticing Goodness: A MOPS challenge

“Mom! Can you help me find my backpack?” “You are literally staring at it. Your foot is touching the strap.” Sound familiar, Mommas? Sometimes it feels like only moms have the superpower to see things around the house, like laundry, cereal bowls left in the sink, and other things that help us work on patience. They don’t do it maliciously; it isn’t their focus so they just don’t notice.

Likewise, goodness is all around us but we often lose sight of what is obvious. To focus on the good, we have to define what is actually good. Is pulling all-nighter good? When caring for a sick child, yes. Playing games the night before a test, no. This is harder than it looks. The very definition of good seems fairly complex.
Webster defines Good as : 1. having proper qualities 2. beneficial 3. valid;real 4. healthy 5. honorable 6. enjoyable, happy 7. morally sound or excellent 8. skilled, considerate

From brain studies and psychologist to educators and the pulpit, the benefits of ‘focusing on the good’ and being thankful abound! Moreover, if we discipline ourselves to notice the good we renew our minds and make goodness our focus.

God is described as good 48 times in the Bible. Every description of good also fits God. James 2 says every good and perfect gift comes from God. When you see goodness, you see God at work. Many of us have struggled through difficult seasons. When suffering comes, it is hard to feel God’s goodness or Christ’s love even if we know it is true. When my infant struggled through cancer treatments, I had to literally write lists of God’s goodness and mercy to strengthen my faith through the suffering. Looking back, God allowed his little life to glorify him and spread the gospel to people who would never have gone to church. What felt terrible actually brought forth good.

Sweet Ladies, maybe no one noticed or appreciated the goodness around you this week. As you drive carpool, wipe up messes, serve meal after meal (why do they want to eat EVERY day?), break up fights and help find ‘missing’ items twelve inches from the seeker, your goodness IS noticed. The God whose very character is goodness notices and rejoices as we become more like Jesus. THAT is good. When you see goodness in your fellow ‘momrades’, mention it! I am amazed at the excellence and joy at some of you Pintrest Queens and Chef-tresses. Noticing your good doesn’t negate my lack of excellence; it is a facet of the goodness around me. Let’s notice and encourage each other. When moms are focused on a task for the Most High God, goodness is sure to abound. As the Holy Spirit works in us, goodness with pour out. (Galatians 5:22-23) We must simply train our hearts to notice.