Gravity, God and Getting Up

He was ready. His backpack was ready, his outfit was dapper and he greeted the bus with and enthusiastic smile. The doors opened to the sound of a hiss and I watch Jon take a large lunge toward the bus… only to lose his balance on the curb and come crashing face first into the large, ribbed stair chin first. I chuckled and checked for blood. He whimpered, finished the climb and found his seat. “Rough starts happen, Buddy. You can still have a great day. I love you!” I shook my head with a smile and thought, “Yep, that’s my kid.”

I have evaluated my boys’ progress this week because professional evaluations have come home. It has been a mixed bag. On one hand, capabilities were judged harshly. There was a great rising in my spirit to say that yes, when you compare the performances to ‘typical’ kids, mine fall short. However, there is great progress! They are moving forward!

I sometimes wonder if God watches me get prepared and eager to go, only to fall on my face. Undoubtedly. I find that I then make that day the one where I fell on my face. My kid recovers faster than I do, sometimes!  It is always hard when others evaluate your child. Assessments are one part of the puzzle and it is good to look at progress and areas of weakness. It is also good to balance it out with celebration. Grace and truth must to hand-in-hand. It is one thing to point out where I fall. It is another entirely to point out when my children fall.

I find that God does the same thing. The Bible shows us where he chastises, instructs, guides, and disciplines his kids. He gets a bit wrathful with disobedience too, as it turns out. Jesus did turn water into wine when his mom asked… I’m just saying. Still, when others messed with God’s children- Israelites and Church- it was ON. The goal was always to guide and love toward perfection and holiness while being fully present and understanding of where they were in the moment.

Today I had an amazing encouragement of a friend knock on the door with ice cream because sometimes that helps when gravity is too much. She could have hit me in the head with an apple, so I will take ice cream. That is the key. You find your people who can coach and encourage, speaking truth and love.

Take King David as an example. There are those who love to focus on his defeat of Goliath, authenticity before the Lord, leadership, and preparation for restoring the temple and Israel to glory. . Then there are those who can’t get past the adultery, murder, parenting failures and wavering spirit. The key is to see both. Humans are messy, friends. It can be both/and.  That is how God sees us. That is how I am learning to see my children.

As Jonathan and I say every night, “God never gives up on us, so we never, ever give up.”

Get up. Admit that it hurt. Find your tribe and keep climbing. Pray about it. After all, God is a parent too.

If You Give A Boy a Bowtie

 

If You Give A Boy A Bow-tie

If you give a boy a bow-tie, people will tell him that he is cute.

Pretty soon his brother will get jealous and start wearing bow ties too. If you give a brother a bow tie, pretty soon he will want a fedora to go with it.

 

If you give a kindergartener a fedora, he will suddenly remember his suspenders. If he gets his suspenders, he will refuse to wear pants with them.

If a boy refuses pants, a mom will have to fight it and end up explaining that while Jesus didn’t have to wear pants to school, I am not Mary and until he can turn water into wine he has to wear pants.

When he wears pants he will take off his suspenders, no longer looking like A Sound of Music extra and will want a picture.

kaitandjonbowtie

If a Mom takes a picture, the boy will say, “Cheese!”, which reminds the mom that the cheese stick and other lunch items are still in the fridge. If she goes to the fridge and tells the boy to put his lunch in his backpack, the boy will start putting other wanted items into the backpack.

If a boy has his backpack, he will start to walk to school and a neighbor will say you missed the bus. If you miss the bus you have to walk, which will make the bus then magically turn down the street. However, you will have left the house.

If a mom sees a bus that her child needs to be on, she will wave the bus down and embarrass the boy, which is her right and duty. If the boy gets onto the bus, he will forget how he begged to ride it and not care that his teacher prefers it, and will start clinging to his mother and panicking.

baby exploding

If a mother has a panicking son on a bus, she will still strap him in while hugging him and praying out loud for courage. The mother will wave to the bus while her son screams to the kind bus aid, knowing it is best and remaining composed like an “ice-cold Mother Theresa”. Then she will look for her phone unsuccessfully and then leave to lead Bible Study.

If she is on time to the church and drops off her other bow-tie wearing son, she will find a friend to sit next to and lament a lost phone. Then the friend’s phone will ring. It will be the school, calling the emergency contact to say they tried to call the very phone they were holding and that her son put it into his backpack. The friend will laugh.

excuse me sir

When a friend laughs, it  will make the mom laugh and realize you have to make the best out of the situation and make the difficult daily grind fun. She will do something like invent a Bow-Tie Tuesday. This will spread and become a fun trend.

Then, invariably, someone will think it is a good idea to give a boy a bow tie.

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 loving, 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. What am I talking about? 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. I admit that I bring up the laundry 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 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 I stopped being able to come 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.

Listen, Jesus spent over half of his earthly ministry with ‘the disabled’. It is time for those who are differently made to have someone pull up a chair at the 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  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.

feelingolympic

 

 

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.

3-Cool-Runnings-quotes

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.

John-Candy-in-Cool-Runnin-006

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.

FEEL THE RHYTHM! FEEL THE RHYME! GET ON UP! BACK TO SCHOOL TIME!

2A0RinL

 

 

 

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. On the first day he asked to to have a date at Chick Fil A. Today we had teaching time. Afterward he grabbed my hand and pulled me in to play with him instead of letting me do the dishes. We played, laughed and tickled, just us.  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 that sometimes resemble ASD. 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.”  That is a bit of what is happening. The price of hours and hours teaching a child to walk is an unspeakable joy when he stumbles into his first steps. To feel the magic of hearing 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. 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.

For years the cost has been steep as it has been intermingled with wonder, heart-changes and sanctification. Some of the cost was an expensive down-payment for all that we are experiencing now. For many families this looks typical. Family dinners together, kids who see each other more than once a month, going to school with peers who encourage, making friends, feeling a part of something glorious– but these things were not in my life last year. The cost of cancer was high, but oh, the reward is priceless. 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