How You Can Help Us and other FAQ

I planned on writing a blog about Carolina For The Kids and my incredible experience with UNC Dance Marathon, but that will have to wait. Life  was interrupted.

William the Conqueror is suffering greatly with complications after chemotherapy. I make it a point not to get too technical or graphic, but this month has been exceptionally difficult due to the aggressiveness of the medications and two infections he got while his immune system was destroyed. He is in great physical pain and we are emotionally weary. Our hospital stay will also be longer this month as we fight to regain strength.

I put forth a Facebook status with a prayer request and received an amazing amount of prayer, support and love. It also spurred many, MANY messages from those who love me with common questions and suggestions. I realize it may be helpful to address some of those questions now, because in my state of being exhausted, heartbroken to be away from William and physically sick, I just can’t address everyone individually. I tried, but finally my husband hid my phone.

A beloved family member who has experienced serious illness wisely told me, “You don’t chart your course in the middle of a storm. You chart in beforehand and then when the storm comes, you hold steady with all your might.” This post is so that I can answer you all without letting go of the helm.

Frequently Asked Questions:

Is William going to die?/Is this complication serious?/Are you scared?

Yes, William is going to die. So am I and so are you. It is unlikely that this battle will be the cause, but it is possible. That is why we are doing everything possible. Complications are the main cause of death during DS-AML, so this is serious. Dehydration and infections are the largest issues, but he is eating and drinking far beyond usual, meeting new milestones. He is a conqueror! Of course I am terrified. I am a mother. Let me say this once and over and over: The worst thing to come out of this is not that I would lose my child to cancer, for he would be with Jesus. The worst thing would be to not recognize Christ’s redemption and give him glory, or to not become more Godly through this trial.

Are the doctors listening to you?/Are they just prescribing antibiotics over and over?

I have NEVER seen such an amazing team. Just walking into the hospital on Saturday I saw one of the docs. She was headed to a funeral of a patient from years past that she learned had died. She cried as soon as we spoke. Yes, I want my son in these hands. They are very open to natural and various types of medicines and encourage all the natural skin treatments I have instead of steroids, etc. I plan on hiring the nurses as nannies when we leave. They come in just for dance parties and snuggles, cheering on every milestone and checking which bowties he is wearing. They see the whole patient and care for me as well. He is on antibiotics AND probiotics to protect him. They are preeeeeeetty good at what they do, being one of the top 10 in the world and all.

Do you use/want/need any essential oils?

I am aware of the popularity and purposes of essential oils and the myriad of health benefit claims, namely that Frankincense helps irradiate cancer. In fact, we use oils regularly, to include frank, thieves, peppermint, DiGeze, etc. etc. etc. Thanks to the frankincense, William and Baby Jesus smell the same. Boom.   It has helped tremendously and if you want to send oils, that would be fine. Reading additional information is NOT helpful to me right now. It feels like adding to a to do list that won’t get done, and that I am not doing enough for William despite best intentions.

Have you tried blood transfusions?

Yes. He has had 3 transfusions this week because his hemoglobin went below 8.1, and received platelets as well.

When Jason asked he offered to fly here and give him a transfusion. Wow. While unnecessary, offering your blood for another is powerful. Donating to your nearest bank saves lives. If you are able, I would.

Have I seen/watched/read about that HBO special “Killing Cancer”, the benefits of medical marijuana, and non-chemo related ideas for treatment?

Yes. William’s plan of treatment is 5/6 complete. His leukemia is specific and specialized, highly survivable and treatment is 95% successful because it is Down-Syndrome-Associated. Much of the information does not apply to us. I will be interested when we aren’t in emergency mode. These links, while interesting, are like throwing “How To Swim For Dummies” to a drowning person.

When can you be with William again? /When will he come home? /When will you be together as a family again?

I will trade out with my mom in the hospital when this RSV is out of my system, hopefully Wednesday. He will come home when his ANC reaches .5, his blood counts are trending upward and his system tests clear. We hope this will be before April. We usually get a week at home before starting the next round. Daddy and Big Brother can’t visit easily due to the flu precautions at the hospital which prevent kids under 12 from visiting.

HOW CAN I HELP?

1.Pray. Pray for us all the time. Have your mailman’s hairdresser’s cousin fourth removed from the dog’s side pray. It is like being surrounded by warriors on every side who are punching cancer in the throat.

You can recognize that there is nothing you can say… so DON’T say anything. Listen. Be still. It’s hard, I know. Just hug, send chocolate and trail mix, or tell me what an amazing job my man and sons are doing. Tell us how you are inspired or what Jesus is doing in your life. Tragedy happens. Sit, suffer and make a casserole. That is how you share our burdens. It makes me feel supported and loved.

2.Send me things that are funny! Laughter is good medicine! Things that are quick though, because reading is not in my realm of possibility right now beyond books I read to the boys.

3.(Gulp) You can donate to us at our gofundme link.http://www.gofundme.com/williamswarriors. We are very thankful for the Usborne book and Jamberry parties done in our honor.  This has helped with gas money, the medical and pharmacy expenses that are not covered, and items we will need after the chemo is over. There will be another year of recovery afterward, including an immediate move.

4.You can message me and tell me you are praying and that you love us. You can send pictures of your kids and videos for William. Most of all, understand that we are struggling. I am a fixer. If there is anything I can do, it is being done. Really. We can’t have enough cheerleaders.

5. You can take over ‘the back burner’. I need my fridge cleaned. My bathrooms are an abomination. When I come home, a month of work my amazing husband can’t do because he is working and raising out 3 year old is there. If you want to come and iron with me or take donations to the shelter, please do. Those things help me breathe. When we move out, I will take great joy in hiring a cleaning service to do it because someone paid for it already. 🙂

6. If you know us, you can encourage my husband and our family members. Tell our parents that they did a good job and thank them for not killing us. Encourage that man of mine and tell him what a great single-working-dad he is becoming in addition to being a soldier and cancer-Dad who loves Jesus. Show your kids William and let us be a teachable moment.

7. Offer something specific. It is easier to say yes to something specific that to come up with what we need, especially  when we need sleep or showers. Offering to bring a gift card or pizza on a specific night and then asking which time will usually get a yes. Look at what you can give or how you like to bless and offer. It is easier for all.

I love you all very, very much. You are a part of our story. Please don’t hear this as complaining. Just know we are at a weak point. We are not crushed, not abandoned. We are struck down but not destroyed. You are helping. You are important. You are NEEDED. Thank you for standing by us.

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Confessions, Christ and Competition: When the Devil wants to Dance at Midnight

Today I went to war. A simple comment made me feel shaky while on solid ground. Now it is after midnight and I have had to do battle with the Deceiver. “Dancing with the Devil in the pale moonlight” is a good line from a Batman movie, but I can assure you that the Devil will always try to lead and step on your toes. Seeking and clinging to Truth really can keep you up at night.

In about 45 days William the Conqueror will be done with the chemotherapy journey against leukemia. There will be a year of maintenance afterward, but the most challenging part will finally be over. We should be preparing to celebrate, but today I felt shaken. When I say we have spent half a year in here, some are stunned. Others say that is not long at all. 6 months in a hospital is a long time and 6 months in a hospital is no time at all. It can be the fight of your life or life as usual. When I mention our 6 month fight to those who have been here for years, it feels almost shameful– like I had a “Diet Cancer” or got away with a half marathon while they are on their second or third full Tough Mudder.  Sudden feelings of embarrassment or the need to pay conversational homage sets in to those who ‘have it harder’. I can say “It’s NOT a competition!” all day long but believing it.. ah, that is another thing.

I returned to my room and felt voices of doubt swirl all around. Did we have it ‘easy’? Our family has been apart; our bodies and emotions bear scars and show what cancer does to families. Was my joy and increased faith in the Lord’s deliverance because I have it ‘easy’ and everything looks promising? Suddenly the words from the book of Job echoed. This voice was FAMILIAR.

“Does Job fear you for nothing? You have put a hedge around him, his house, and about him on every side…” Job 1:9

Knowing the Word of the Lord teaches one to know not only the Master’s Voice, but the Enemy’s. The Liar uses the same lies on us.

Comparison is the thief of joy. I have found that in communities of like-suffering, it can always be a competition. We broken humans will always determine a pecking order. When we choose to let our suffering become the cross we proudly bear ourselves, Jesus is not glorified and we are not sanctified through it.

A text message came in from a woman I deeply respect shortly after this incident. I told her that I was feeling a little shaky and she replied:

“Isn’t Satan so weird? Today I was feeling shaky because a good friend is getting a big fancy house. Praise God you’re only doing cancer for months instead of years. Carry that yoke as long as he says and then fling it to the nether regions! But being shaky isn’t fun, especially when you already know the truth.”

We can be shaky, even when we know the Truth. When we take our eyes off of it, we sink into the water like Peter. We become deceived like Eve. We become selfish. Instead of looking to the interests of others as Philippians instructs, we become interested in the look of others.

Have you fallen into this trap recently? Have you graded your situation against another? Have you been glad you aren’t as ____ as another person? Thanked God you aren’t like someone else? Been discontented with where God has you, especially when you feel he is leading you toward something great only to interrupt the plan with something terrible?

In the Book of John, when John the Baptist baptizes Jesus the Spirit of the Lord descends on Him and a voice declares, “This is my Son, in whom I am well pleased.”  After this beautiful ‘mountain top’ moment, Jesus is IMMEDIATELY taken into the wilderness to be isolated and tempted by the Liar. His lies are the same. Satan still taunts, “You can’t trust God to care for your needs.” (Make bread and provide for yourself). “You can have all you desire without God. He won’t give you what you want.” (Bow to me and I will make you ruler of all you see) 

I confess that I am struggling and fighting. In this moment, I MUST do what God instructs and look to HIM and not at my surroundings. I must go to His Word. ” If God is for us, who can be against us?” “Be strong and very courageous, for the Lord your God is with you wherever you go!” ” Behold, I am with you always, even to the end of the age.”

When danger comes, listen to the voice of the Shepherd. Strain to hear the call of the commander above the battle. The Truth will crush the Deceiver and the Tempter.

The beauty of our trials and temptations is that it become the testimony of our weakness. It doesn’t matter how long I battle or what we encountered if it isn’t a shadow in the Light of what God did. It doesn’t matter if one woman’s wilderness is another woman’s paradise if she encounters the Most High God there.

I have friends who have been in this hospital for a week. Their three month old son is being treated but will require another week of treatment. They are tired and want to go home. A week in here is HARD. It may feel more familiar after the 4th week or the 18th week, but it is still hard to be in a hospital. We have laughed and visited. They encouraged me greatly. I can’t wait for them to get home! Never once have I thought about them having an easier time– because I love them and I know how hard that first week was. I feel encouraged by their presence and thankful that we can endure something similar together, although I wish it would be over soon for the sake of their families. My friends, that is what love does. It is important to be aware and hurt by suffering. It is good to be grateful. Let us then encourage and build up, not compare and be deceived. Offer yourself the same grace.

Your testimony is your own. There is NO one like you who has encountered things exactly the same. Today I was shaken into feeling embarrassed of the testimony I have through this trial. What I can tell you is in the last six months I have learned to surrender.  I have confessed sins, fears and doubts. I have seen the Healer at work. I have seen true encouragement. I have proclaimed my weakness and the trustworthiness of Jesus, the Lord.  God ordained that 40 days in the desert was long enough for Jesus to be tempted. It seems God has ordained half a year is enough for this part of fighting cancer. Praise God!  It certainly won’t get easier when we leave the hospital doors, but I can be assured of this– the Lord will be with me wherever I go and all that happens has been ordained or allowed. Serving Christ is not a competition.

“Then I heard a loud voice in heaven say: “Now have come the salvation and the power and the kingdom of our God, and the authority of his Messiah. For the accuser of our brothers and sisters, who accuses them before our God day and night, has been hurled down.” Revelation 12:10

Superhero Saturdays

After a hard week of fighting childhood illnesses, our little heroes get tired! Thus, William the Conqueror has Superhero Saturdays to relax!

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Why superheroes? Many of them have different genes. Things that are hard for them are easy for us and vice versa. We aren’t sure we’d want to be like them at first but when they are around, amazing things happen. Extraordinary challenges need heroes!

Today was a very special Superhero Saturday. The East Coast Cape Crusade came to the hospital!

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The Cape Crusade honors children battling childhood illnesses by giving them personalized capes and Superhero certificates!

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We couldn’t wait! We got a visit from some amazing volunteers which included a special concert! An inspiring teenager named Ryan brought his guitar and have William a dance party.

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The volunteers become a second family. We have a little too much fun. These amazing ladies pray, dance, encourage, bring treats and remind us what ‘real life’ outside hospital walls feels like. They are superb hug givers!

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Finally, it was time to take my superhero upstairs!

There was a large assortment of beautifully made capes of all sizes hanging ready. Volunteers buzzed and greeted kids. We soon found a Superman cape that matches Will’s blanket and teddy bear. A “W” was quickly stitched on right there in the room and pictures were snapped. It was a great celebration of super-strength, courage, and inspiration for others.

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I am unbelievably impressed with the volunteers, charities and wonderful people who pour out their love and time on those who are hospitalized. Many kids who have overcome their struggles return to give gifts and time to those who are here. Struggles teach compassion. Visiting the littlest and the least means the world to those of us in here. Our days are fun and not quite so monotonous.

This afternoon, kids of various sizes and struggles roamed the halls wearing capes. It looks perfectly fitting, for this is a place where my heroes are.

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Is it a bird? A plane? No, it’s my hero.

For the Love of Taylor Swift: Leukemia? Shake It Off!

Hi. Meet William the Conqueror.

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William was born extra-ordinary. He has bright blue eyes, great dance moves and a contagious smile.

He also has Down Syndrome and leukemia.

William Erkkila 007

William the Conqueror has a lot to overcome. There are some very rough days.

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About a month into his cancer treatment William was inconsolable. In a desperate effort to ease his sickness and suffering, I turned on music to get him dancing. Many tunes got him moving but we soon realized that nothing stopped his crying like Taylor Swift.

When we would turn on other songs, he would shake his hand to let us know only Taylor would do.

During one surgery he came out of anesthesia too soon and a nurse quickly got Shake It Off to play on a phone. It kept him quiet until the procedure could be completed. Soon after that, a typical night shift included dance parties, always starting with Shake It Off. The staff at UNC quickly shook off all pride for their little man who no longer had his ginger “hella-good hair”. Dance parties are now a tradition.

On those blessed days we can be at home as a complete family of four, we have dance parties in the living room. The normally shy four year old brother beams and dances as he sings the opening lines to Taylor’s songs. For a moment there is no medicine, no hair loss, no nausea and no struggle of being apart. There is just dancing, joy and celebration of another month survived.

Many mothers write to Taylor Swift asking her to remain a ‘good’ role model for their daughters and to maintain a certain persona. Her interviews have given me the impression that she would rather encourage others to discover who they are and to be that proudly. I am raising a son who is different. He is extraordinary. He is made to inspire rather than to fit in.There will be much to overcome and to shake off. I would rather him bravely be who God intended him to be than fit in.

As I watch my child struggle and fight, I watch him smile, dance and shake through it. As a mother, I often feel helpless and weary from being unable to soothe my child.  I am exceptionally thankful for the joy William receives and spreads as we scroll down the T-Swift playlists.

Be different, Taylor. Be yourself. Inspire others, but most of all inspire yourself. You have an open invitation in our home to come on over. We can shake, shake, shake. Until then, I look forward to our final dance party with the hospital staff when we finally shake off leukemia.

Thank you for your prayers and support. If we can reach Taylor Swift simply to thank her for the difference she has made to my Cancer Conqueror, I would appreciate it.

With love,

A Thankful Mother of a 2 Year Old Swifty

How NOT to Complain (and other important lessons I am learning)

In seasons of suffering it is very tempting to complain and grumble. NO one likes a complainer and sometimes the “who has it worse” game is a competitive sport. There is a time to “cry out” and to process disappointment, but grumbling is not healthy or God-honoring. I’m finally learning a few steps to keeping my HEART– yes, not just my mouth– from complaining.
**This is NOT instructing you. This is to demonstrate the details of “how I do it”**

Yesterday was a “roller coaster” day. Filled with ups, downs and getting thrown about a bit, by the end of the day I was a bit sore, weary, and ready for a rest from the fun. I’ll be honest, I woke up early and did NOT want to get out of bed. “Lord, I don’t want to face today”, I grumbled at God. “Be thankful” the Spirit answered.As I got my little ones out of their rooms to start the day, I sang the song my mother always sang as she woke us up; “This is the day! This is the day that the LORD has made…I will rejoice and be GLAD in it!”  They both smiled at me. I decided I would be glad in it, darn it.

The first step to NOT complaining is to determine in your heart to be thankful. When my focus is on God’s glory, God’s plan and how I fit into it, I am far less worried about my day, my plans or my comfort.Here’s an honest look at my frustrated heart and the painful refining that is taking place to make me a more tolerable and God-honoring human being. The fact is, we all like to complain and feel wronged. Learning not to is a discipline!

Thankfully, my friend Jen from Heaven Not Harvard wrote up a 30 Day No-Complaining- Challenge a few months ago and I was quickly convicted.  Check out this awesome perspective-changing challenge at http://heavennotharvard.com/2014/10/23/30-days-without-complaint/

Could I make it without complaining?

I dreaded saying goodbye to my Firstborn. IMG_4814 William and I quickly packed the car up and drove to UNC. We had a great clinic visit but there was no room for him. All in all, we waited 7 hours. Frustration mounted.

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We had to wait… but there were toys and volunteers! The clinic is usually crammed, but this day was empty due to the bad weather this week We had a set where I could sit and feed Will more easily!  Then he fell asleep…on my full bladder.When he woke up, the child ATE! It was messy and ruined his clean shirt, but without the ability to get a pump for his extra calories, his healthy appetite was a blessing. I reached into my bag for extra baby food and saw that it was a bag given to me by a pastor’s wife who came to visit. I am trying to pray for people when I think of them (a hard discipline for me) but Pam got a prayer.

The second step to not complaining is to recognize God’s provision.

Soon my tummy grumbled and I mentally noted that I had missed two meals when the doctor poked through the curtain. “Did you see the pizza in the break area? It’s cold, but it is food.”  Cold pizza is still something free for my belly. He even brought the slices to me! William immediately reached for the cheese and tried to chomp. Progress!
Will was so excited he pooped his pants. However, I had brought only one bag in–the bag of his clothes! I wasn’t stranded!

The third step to not complaining is to be thankful for others and for tangible blessings. Looking to see who could be blessed in the situation is more important than self-centered complaining. 

A lovely college aged girl met us and introduced herself as Will’s new CPAL, a hospital buddy! She rolled our suitcase and played with Will during the transition. Then I messaged a volunteer in the Carolina for Kids knowing they would be delivering dinner that night, and I asked her to keep a box handy. She messaged back that she would!

When we got to the 5th floor and entered our room, it was a tiny one. That was fine– a blessed room! The staff weighed Will and started his meds while I quickly ate and answered questions. A nurse promised they would get me a larger room when possible, which I told her wasn’t necessary. Then she pointed out that our room did not have a pull-out bed.

The fourth step to not complaining is to realize nothing is promised and I am NOT entitled to anything.

OUCH. I don’t rest much in the hospital, but a bed is very important to me. I had been looking forward to bedtime all day and felt a lot of disappointment. I mentally thanked my husband for insisting on that purchase and for being caring and providing. As I hauled the mattress pad in from the car, I was thankful the ice melted and I didn’t bust my backside. Plopping it down, I realized that one of the chairs reclined almost entirely, into a 45 degree angle. The mattress pad overflowed it, but I could sleep in a huge bed-burrito that wasn’t on the floor.

We settled in and honestly, we had a tough night.

I wanted to complain. In my heart, I felt a bit weary and frustrated. This is when scripture and songs come in handy. What we memorize when things are good resonate during hard times. “Why are you downcast, oh my soul? Put your trust in God!”

When you want to complain or feel frustrated in your circumstances, I’d ask a few questions:

WHY are you upset? I am often frustrated when something I planned or prepared for doesn’t go my way. I’m not in control or not comfortable.

What opportunity is God giving you in this moment?

Who is around you that may need help? What circumstances are coming to light you may not have noticed before?

What CAN you change? How can your attitude and action improve the situation for others?

How can you give God glory in the situation? No one likes a grumbling child who obeys with a bad attitude.

What advice do you have on learning to curb the complaining attitude? What victories have you had this week in this area?

Don’t forget, we are thankful for YOU.
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The Gospel According to Jaxon

Last night I decided in my heart that I would attend the night service and not the early service. I had plenty of legitimate excuses; my husband was working in the morning and it would be better for us to go together. I didn’t want to leave my dad alone with grandkids. The Conqueror would need medications right in the middle of service times. The real reason was lurking under all these layers: I didn’t want to bring my 3 year old to church.

Why not? Well, our church population is growing and the nursery is beyond maximum capacity; we can’t get a new building fast enough.  My struggling kiddo does not do well in large groups of  people  in small spaces, especially seated school-like activities. Our struggle is on full display.  When all the factors are combined, the 3 year old class isn’t a great setting for my son. 3 out of 4 weeks, he won’t make it the full 2 hours before we need to retrieve him. While his teachers love him and are great, it isn’t working well.  In our present situation fighting cancer, the thought of not being able to have fellowship or contribute to the Body of Christ is an emotional quagmire for me that has wounded me deeply and made me face some true ugliness in myself.

Now, I REFUSE to say more about that situation in the online world because it will bring criticism onto a) my church b) my son c) my parenting. I’ve had quite enough of that and all the suggestions, thank you very much and bless their hearts.

As I settled into bed and prepared to charge my phone, I noticed an unread text message. Teddi, an amazing mom of four boys and chaos-coordinator extraordinaire, had typed,

“Jaxson wants to know if your Jonathan would like his company for Sunday School”.    Darn it.

Several weeks ago, Teddi informed me that I am one of the ranks of THOUSANDS of moms in the not-nursery-acceptable stage and insisted that I bring Jonathan to the Sunday School class. She refuted all of my reasons with great solutions and simply insisted, “We love you. We love your family right where they are. Bring him. Anyone who can’t learn in Sunday School while loving you where you are can find another class.”

I can push away a mom invitation, but how do you refuse a sweet four year old who actually wants to play with your “Least of These”? “Bring him. Jaxon has asked and asked”, the text read.

Groan. Several families from the church have enjoyed playdates with Jonathan. Their kids ask for him and want to play with him. It is wonderful…in a loving, open, noisy house. Then again, the best way to bring people to church is through personal invitation. The pastor says it all the time. He is right.

Today we arrived early to Sunday School. I soon saw Jaxon in his adorable cowboy boots that went well with Jonathan’s cowboy hat. Jaxon excitedly presented Jonathan with a toy– a stuffed cactus that wore a cowboy hat just like Jonathan’s. He specifically thought of Jonathan. It is one of the first gifts a child ever picked out and gave to him.  They shared a snack and Jaxon followed Jonathan around as he ran about the room. With toys in tow, Jonathan jumped down the choir-room-stairs and walked right up to people. During the teaching he walked right up the the podium and listened to Byron teach. He chattered away, stared up at him, and jumped around his feet.Byron simply took Jonathan’s hat, put it on and kept going. When Byron wrote on the whiteboard, Jonathan tried to write too. Jonathan fully enjoyed being around Byron as he taught.

I was DYING inside.

I am the firstborn, Type A, not-in-my-house mom. With everyone watching Jonathan I was exposed and vulnerable.

Teddi held me back with the ‘mom-arm second seatbelt’ and repeatedly told me to sit down and let him be himself. NO! He needed to sit by me. He needed to be quiet and not distract people. The years of advice, scowls, “my kid would never”s, etc rang in my ears. Teddi patted my arm and said, ‘Let it go” so many times I may have to call her Elsa from now on. Several friends told me to relax and that no one was bothered by him.

Then I noticed something. Jonathan went up to a few people repeatedly because they SMILED at him. He actually looked at me in disbelief. I realized I hadn’t been smiling. A look of stressed frustration had been on my face. How many Sundays had he seen that face more than smiles?  The pleasantly surprised look on his face soon spread over his body as Mike laughed with him and asked about his favorite toy. During the prayer, he tried to hold Jonathan’s hand and pray with him but never shushed him. Then class began.

Jaxon quietly got up from his seat and followed Jonathan. They played in the front of the room at the teacher’s feet TOGETHER. Jaxon met Jonathan where he was and loved him. That is what being a follower of Christ is all about.

Jaxon waited patiently and very gently took a toy from Jonathan, returning it when he wanted it.We went for a walk and the boys played in the hall. We saw another mom whose baby was fussing. Her husband, annoyed at his own child’s noise, told her to step out. We huddled up in the mom-circle with whispers of “I’m here too”.

We returned in and the the quiet chaos continued. My child acted like a three year old boy. He wandered and played. He didn’t cry, scream or act ugly. He put himself on display as he really is, without pretending. He didn’t “behave” a certain way. I was prevented from correcting him– which I needed. I would have done it to save face and would have apologized for my son as I have for two years. Jonathan smiled. He laughed. He spoke. He never cried, screamed or asked to leave. NOT ONCE.

As the bell rang, Jaxon hugged Jonathan. They smiled at each other. We had a mom and son group hug. I thanked the class for patiently loving us where we are and then turned to Jaxon on my knees so I could look him in his beautiful eyes. “You are my hero, Jaxon. You loved me and you loved Jonathan today. You were patient and kind. You did what Jesus says to do. I can’t wait to see how Jesus uses you.” He kissed my cheek and whispered, “I love you.”

Today three different moms said versions of, ‘We love you. We want you here. If that means a little more noise and a kid underfoot, oh well. That’s what church is supposed to be.” and “I’ll walk with Jonathan. I’d love to play with him!”  Words like that drown out the silent voices that scream that my child and I are unacceptable, unwelcome, unlovable and difficult. Make no mistake, NO ONE at church said those words. Those are the lies Satan whispers to us that begin to echo in our heart when our children struggle. I discovered that those words get muffled when I hear, “We love him the way he is”, “We are SO glad to see you”, “We are praying for y’all! How is William?” and “How can I help?”   When the broken people aren’t accepted in church, you get nothing but a group of Pharisees. I should know– I am a recovering Pharisee. Raising a child with Down Syndrome and a Rip-Roaring-Struggling-Toddler causes painful sanctification. I know I am a broken mess…just how Jesus wants me.

Maybe next week the three year old class will work. Maybe he will have to be in class and then come with me. What I do know is that we are seen. We are loved. We are gently sharpened and spurred on to be better. That is what the church should be.  That is the gospel according to Jaxon.

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Jaxon                                                                              Jonathan

“Let the children come to me and do not hinder them, for the kingdom of Heaven belongs to such as these.”