Month: June 2019

The last day of Vacation Bible School?! Usually, I’m so exhausted by the end of VBS that I am glad for the last day, but today I actually feel sad. I’ve enjoyed seeing Zoey experience God in a new way, and I’ve learned quite a bit this week.

Our morning went great and Zoey was excited to find our crew heading to snack first! She had been signing “please eat” since yesterday afternoon when I made gluten free vanilla cupcakes with white chocolate covered pretzel roofs. Zoey can’t eat regular chocolate or cocoa powder because she absorbs too many oxalates, which cause her to develop kidney stones. She soon was on a sugar high which is the best time to be around Zoey! Her crew mates had her doubled over in laughter when I taught them the sign for “like” and “don’t like”. We made up things we don’t like to make Zoey laugh. For example, I said and signed, “I don’t like dirty napkins,” and tossed my napkin in the air. One friend said, “I don’t like stinky diapers!” Zoey’s giggles were uncontrollable! All the kids were cracking up at her contagious laugh!

The happiness continued in Bible Adventure! After learning about how the Israelites built an alter of remembrance to celebrate God’s goodness, the leader handed out black rocks and paint pens and told us to have our crew members name one thing that God has done for them that is good and write it on the rock. I listened as the kids in our crew answered with age appropriate responses such as, “God made the sky, God made the trees. etc”. I turned to my daughter, who will be eight in October, and asked her, “Zoey, what has God done for you that is good?” She rubbed her tiny hands together, signing, “Wash.” I was puzzled for a second and then it hit me. I asked her, “Zoey, are you saying God sent Jesus to WASH your sins away?” She laughed, which always indicates I am right! I held the paint pen in her hand and helped her write the word on her rock. My amazing daughter has a deep understanding of God’s amazing goodness!

Zoey did have a meltdown later in the day because we were sitting close to the snack room during Missions, and I sort of agree with her protest. Cupcakes are good! We should be able to go back for more! Hahaha! However, I wasn’t really upset with her crying and whispered a prayer for her to feel better about not having snack. She continued to cry a bit, but I just kept thinking back to her rock with the word wash on it. Overall life was still good today, and when life is good, God is good!

So just to make this clear, Zoey has never been “taught” the question, “What did God do for you that is good?” She didn’t answer that question from rote memory. She answered it spontaneously with knowledge that has been imparted to her over the past four years. Zoey has been in the 2&3 year old Sunday School class since she was three years old. I can’t believe it has been that long! I keep thinking there is no way she has been in the same class that long, but I see kids each Sunday that have cycled through that class with Zoey and are now entering first grade! I’ve been holding her back due to lack of maturity and her developmental delay. Our 2&3 year old Sunday School teacher is amazing! She has been delivering God’s word to Zoey patiently throughout all the paper tearing, peer hitting, and snack meltdowns. Obviously those lessons have penetrated Zoey’s soul! She knows that God’s most important, good act towards us was sending his only son, Jesus, to die for our sins and “wash” them away!

I’ve been praying for God to reveal to me when Zoey is ready to move up into a more mature class. God sent me a sign today of Zoey’s readiness to move on in life. On a solid rock, we wrote one single word, and on Christ the solid rock Zoey will stand! Praise God for this good life. When Life is Good, God is Good!

(A picture of our “rock” is coming soon, hopefully! I was sad to find out that Zoey’s rock didn’t make it back to use from our crew leader’s bag! I wanted to keep that rock forever! If we can’t find it at church, Zoey and I will be reliving this moment and making another rock. This was an amazing moment in Zoey’s life that needs an alter of remembrance just like the Israelites in Joshua Chapter 3-4, even if it’s only one stone high!)

Update! At 6:00 PM today, one of our dear friends and the music pastor of our church presented to me Zoey’s memorial stone! He went on a hunt for it and found it! What a wonderful friend and brother in Christ! He’s also an amazing musician. Check out Travis Ham’s music here https://open.spotify.com/artist/0W57I3tQxLHXyC0vM2cfDq

Zoey was so amazing on Day 2 and 3 of vacation Bible school that I woke up this morning expecting everything to go great! I asked God to reveal to me what he wanted me to learn that day from the theme “When Life is Sad, God is Good!” I thought, I can easily write about sadness!

We have been through so many sad moments in the past seven years. I remember crying on the floor in my closet, “Please, God, just help Zoey to grow!” She was diagnosed with failure to thrive when she was three months old, but we were able to help her grow by visiting a gastroeneterologist and trouble shooting her nutrition plan. I bawled tears as I had to stop nursing her, feed her with a special bottle at a special angle, and fortify my breast milk to 27 calories per ounce. That was not how I wanted God to answer my prayer! I wanted her to thrive off of breast milk alone and without bottles. This was truly a sorrowful moment in my life.

I also cried out to God one day while in the bathroom with Zoey during poop duty, “God, just help me to be happy!” God’s answer was immediate! Zoey signed “Papa” and the grabbed her tiny little nose for the first time and made a nose blowing sound. She was imitating my husband’s loud nose blowing sound that made her laugh. This made me crack up instantly. Gotta love God for being so good to turn a sad moment into a jolly one!

And then there is my chronic sadness that I refer to as chronic sorrow. Chronic sorrow is a continual sadness that never goes away, but I don’t think it is like depression. Depression, to me, means that I no longer want to interact with the world around me because my life circumstances have come to a point where living life is impossible. With chronic sorrow I can still find joy in various moments of my life, but then out of the blue I will be saddened by the fact that Zoey will forever be dependent on people around her and will always have to take medication for her body to function normally. My heart is broken for her.

So because I am so familiar with sadness, I thought maybe I could talk with the kids in our crew about different times that I had been sad or that Zoey had been sad. I was trying to think of a time Zoey was sad during her multiple surgeries, but she has never been sad after any of them. Sometimes she was a little scared, but never sad. In fact, she was able to belly laugh after having major palate surgery. She amazes me. Other than being sad when her food is gone, Zoey is rarely sad about all of the hardest parts of her life. I became a bit disappointed because I didn’t think we would have a way to witness to our kindergarten buddies.

Zoey, apparently, had other plans. Today she was SAD. From the moment we sat down for the opening songs and praise, she turned into me and started to wail. She cried during Bible Adventure because she earned a package of fruit snacks for trying to answer a question, but when the fruit snacks were gone, she was devastated. She cried on and off during Imagination station and laid on the floor covering her ears because she broke a pencil and accidentally kicked a friend with her hard orthotics. She cried during Missions for an unknown reason and we finally just went into the bathroom and sat on a bench so we wouldn’t disturb the other kids. She cried during Games despite me trying to cheer her up. It was insanely hot though! I wanted to cry, too.

Throughout all of these classes, our crew members asked why is she sad. With shame I answered, “She is sad because…

• her fruit snack prize is gone
• she broke the tip of her colored pencil
• she doesn’t want to give away the bag of snacks she prepared for people who have no food
• she wants to have my cell phone
• she wants her favorite music video by Jamie Grace to be on the screen up front and not the VBS songs
• she wants her orthotics off and I said not until snack time
• she doesn’t want to have snack last today.”

Finally, as we were waiting for snack, and Zoey was crying in my arms, I whispered a prayer in her ear, “God, please help Zoey to not be so sad as we go to snack time. Help the snack to give her energy to be happy and give her some laughable moments.” We entered the snack room. I took her shoes and socks off and asked the other crew members if they wanted to smell her stinky socks. They played along and made gross faces. Zoey cracked up! Zoey and I pretended to smell her stinky feet and giggled. We chowed down on chips, salsa, and cheese and she truly had an attitude change. She didn’t cry during the closing song and praise time, but cuddled close to me. Sheesh! Next time I won’t pray at end of the day or limit it to snack time! Lesson learned!

The best moment was when she noticed the cross drawn on my hand and pointed at it. She then pointed at her own cross and looked up at me. I whispered, “We have this cross on our hands to remind us that even when we are sad, God loves us.” We need to remember Psalm 34:18, “The Lord is close to the brokenhearted.”

After prompting from the leader on stage, I asked Zoey, “What makes you happy?” She signed upstairs, where she hangs out with her sister. I said, “You know what makes me happy, Zoey? Hugs from you.” She turned around and hugged me! It made all my sadness and shame that I felt that my daughter was being sad for trivial reasons melt away. I realized that God is near to the brokenhearted no matter what the cause of their sadness.

Thank you, God, for revealing to me that even when Life is Sad, whether from circumstances that seem trivial, or from major catastrophic changes, God is good.

To be honest, today I had planned to take a break from being Zoey’s helper at vacation Bible school. I’ve learned over the years that taking breaks when you have a child with Autism is important to maintain your sanity. However, I actually was worried that this abrupt change from mom to aid would result in Zoey acting out. I didn’t want to rock the boat. Plus, I’m enjoying interacting with all our kindergarten crew buddies.

Change. It makes a difference, obviously! Hahaha! Zoey’s wonderful night nurse had been following my plan to keep lights low before bedtime for a while, but suddenly Zoey wasn’t sleeping as well for her. Last night I did a little trouble shooting which revealed that the night nurse had the overhead, bright light on in Zoey’s room right before bed. She told me Zoey seemed to settle down fine after the bright light was switched off. For Zoey, this is similar to playing a video game before bedtime, and disrupts her sleep. So last night was a rough night. Zoey slept fitfully and woke at 4:00 AM. She was banging on the door and needed repetitive guidance by the nurse to get back to bed. Finally after completing my daily Bible study, I prayed for God to help her rest, and she fell back to sleep around 6:00AM. Just one tiny change in the type of lighting in her room resulted in a big change in her sleep cycles.

Zoey’s rough night of sleep resulted in me having to change her morning routine! This is a catastrophic event in the life of a child with Autism. To maximize her sleep, I woke her up fifteen minutes before it was time to go. She was expecting her usual routine ,and when I changed it up, she was not enthusiastic. She was fussing a bit as I pulled her from the car in the church parking lot. I said, “Zoey, guess what?! I know that I changed your morning routine. You went to the bathroom, dressed before having breakfast, and ate breakfast in the car.” She signed and aggressive version of “different”. I replied, “Today’s VSB theme is when life changes, God is good. Look at that. You’ve already experienced a change today by doing things out of order, but God is still good.” We then practiced signing, “When life changes, God is good.” She stopped fussing and we had a pretty amazing day! Absolutely no meltdowns! She had only a few minor complaints where she laid down on the floor and rolled around in mild protest.

The highlight of my day today was when the VBS volunteer on stage lead the entire auditorium in prayer. The kids were to fill in the blank with the name of a person who needs to know that when life changes, God is good. The kids were a bit confused and didn’t shout out names in the middle of the prayer as they should, but actually after. I heard, from across the auditorium, my son’s voice shouting, “Zoey!” I replied, “Yes!” He beamed at me and we air high-fived! I love that my son realized that Zoey’s life is continually changed in small and big ways and is actively praying for Zoey to know that God is still with her. God’s faithful love for us does endure forever.

“Give thanks to the Lord, for he is good! His faithful love endures forever.” Psalm 106:1

This year Zoey accumulated another genetic related diagnosis. Zoey has Non Classical Congenital Adrenal Hyperplasia. This recessive genetic mutation causes her to not make cortisol, a natural anti-inflammatory hormone, efficiently. Instead she makes too many androgens. This caused her to have early signs of puberty, excessive, male like hair growth, and aggressive behaviors. This condition could stunt her growth further (she already has short stature from her two other genetic syndromes). She has been extremely fatigued from how little cortisol she can make at baseline due to these mutations. Luckily, God created the inquisitive human mind. Doctors and researchers have learned how to treat this condition with oral and inject-able steroids. Zoey is feeling much better after only two weeks of therapy! She is even hugging friends again. It’s been an entire year since she felt like hugging anyone.

Looking back on today, I think it would have been fine to have Zoey’s aid attend VBS in my place. God is so very good that this small change wouldn’t have made a difference in Zoey’s day. I would just put my hands together and pray for these life changes to be under God’s control, just like this morning when praying for her to fall back to sleep after a change in her routine caused a problem. I’d add to that prayer how thankful I am for his goodness, his enduring love, and all that he does daily to sustain Zoey and make changes in life so much easier on her. When Life Changes, God is Good!

Thanks to all of Zoey’s wonderful friends and family for praying for a smoother day at Vacation Bible School today! God most definitely answered, “Yes!” Zoey had only one meltdown during the missions portion of the program (more on that later). She had a few lay down on the floor episodes where she fussed a bit, but she recovered well, AND she had NO post VBS meltdown. She was completely quiet on the way home, and was able to participate in speech therapy immediately upon arriving at our house. Also, she scored a 75% accuracy using a communication board with her speech therapist! Praise God for such a great day.

Things are still going good right now . As I right this, she is upstairs sharing a big, comfy desk chair with her big sister, Mya, while watching her play video games. I know that seems a bit boring, but she enjoys it, and it will keep her in one place long enough for me to share our take on VBS day two’s theme, “When Life is Scary, God is Good!”

When your child has Autism, you know what they are scared of just like when parenting a typical kid, but sometimes, without warning, their fear catches you off guard. Today’s only meltdown was because of one of those unexpected fears. Our mission today was to decorate a label, place it on a water bottle, and donate it to the local fire department. The bottles of water will be handed out when fireman have to come to the rescue. Zoey loved making the water bottle with my assistance, and hers was the first one in the donation box. What can I say? She likes to get a task accomplished quickly, or maybe just get it over with so she can move on to the next thing! Ha!

We left the room and were the first ones to sit behind the designated line in the carpet and wait for the fire marshal and fireman to speak with us about what they do. While we waited, I sang the Signing Time song “In My Neighborhood”. Here are some of the lyrics:

The people in my neighborhood 
Are one big family I watch out for them
And they look out for me
Be careful, be safe 
But just in case 
POLICE OFFICERS, FIRE FIGHTERS, A DOCTOR, or a NURSE 
They help me if I’m hurt
They help me if I’m hurt

I thought for sure that this song would prepare Zoey for what lay ahead and calm her fears. She loves Signing Time songs. It’s actual quite painful to sing since have cervical fusion last November. Singing makes my throat swell and it feels like someone is tightening a scarf around my neck. I save songs for times when I think Zoey really needs extra peace and this was one of those times.

She actually was quite calm while the fire marshal explained, “We never want you to be scared of a fireman, and run and hide from him. He or she will be wearing this suit, and even though it is scary, you should always go right up to them if you are in a fire. And remember, when Life is Scary, God is Good.” How true that is especially in a fire. God is so good to give firefighters the creative thinking ability to construct a suit that allows them to save people from fire, while keeping themselves save from the harm of smoke and flames!

I was contemplating this thought when one of the crew leaders volunteered to dress in the fireman’s outfit. As he slipped into the pants attached to the boots, Zoey started to fuss. Then the jacket brought on a shriek. I started to whisper the “In My Neighborhood” song in her ear again, but as soon as the helmet and mask were placed on the crew leader’s head, she screamed in terror and turned away from the presentation while hugging me desperately. All the other kids noticed Zoey reaction. Later, in games, several of the kindergarten kids came up to Zoey to check on her. I told them how this was Zoey’s first time to see a fire fighter. A few of those friends commented about how they were scared the first time they saw a fireman, but this was their second, third, or fourth time to see a fire fighter up close. I loved their compassion and attempt to ease Zoey’s fears. God is good for prompting them to interact with her.

I had my own scare today. I was packing up Zoey’s bag during snack time and I allowed her a little freedom to roam the room. I was keeping an eye on her as always. She was walking back towards our picnic blanket when she turned and took off as fast as she could on her tip toes towards the kitchen. I had no idea if the workers in there would be ready for the tornado coming their way. I envisioned piles of cups of icecream melting on the floor. I jumped up and made a mad dash after her….and…slipped on the blanket! I crashed to floor landing on my right hip, smacked my face on the ground, and jarred my recently fused neck. I thought, “Oh no!!! I damaged my neck, broke my hip, and probably bruised my face!”

I didn’t have time to lay there and continue to contemplate the pains shooting through my body, but got up to find Zoey. Our favorite Sunday school teacher had already caught my wind storm trapped in a cute, fleshy vessel on the move. I explained my fall, but honestly, I don’t think I was hurt too badly. I just had some bruises on my legs, and not even a bruise on my face! Bummer! That would have been a good picture for this blog! Ha! Anyway, God is Good because this could easily have ended with me being bed ridden for months.

That leads me to my biggest fear. I fear that someday I may not be able bodied enough to care for Zoey, or that I will die and go to heaven while she still very much needs me. Life is scary when you have a child who will always need you, and who will never completely grow up. One of our crew members today asked, “When will Zoey grow up?” I replied, “Someday,” because six years old is a bit young to contemplate the life long effects of genetic syndromes and Autism.

In reality, though, Zoey won’t grow up. Consequently, I do everything in my power to maintain my health and avoid harm. I allow plenty of room between my car and cars in front of me while driving. I check my blind spot, rear view mirror, and side view mirrors with an almost an obsessive compulsive like manner to defensively drive and avoid accidents. I exercise daily, but take care not to do any type of exercise that could cause an injury. I eat healthy to avoid chronic disease because I need to make sure, if I have any say in it, that I live a long, healthy life, and that I am able to care for my daughter.

However, no matter what I actively do to alleviate this fear of failing Zoey, I have remained scared. Today, at VBS, I realized that I need to pray for God to take this fear from me. He knows the future, and so far in my life, His loving kindness has never failed me. So many friends and family prayed for Zoey to have a better day today, and God took care of that. He is so very good! Join with me and pray for Zoey to always be cared for by those who love her even when I am no longer able to be her primary caregiver. Help me to stop being so scared of her future. Help me to remember, “When Life is Scary, God is Good!”

Today was Zoey’s first day, ever, of Vacation Bible School. At 7 years old, she is supposed to be entering 2nd grade. I thought it would help her fit in more to be with kids who are of similar height, and asked for her to be in the kindergarten class. I saw today that maybe that wasn’t the best idea. The sweet kindergarten kids in our crew asked several times, “What’s wrong with Zoey?” At first I said, “Nothing, she’s very healthy.” However, these kids couldn’t be fooled and the asking continued! Hahaha! Zoey wasn’t amused though and her anxiety levels were on the rise. She was fussing constantly and chewing her chewy necklace extra hard.

Today’s VBS theme was, “When life is unfair, God is good!” The kids were to learn that despite times that they experience unfair circumstances, God is good. Some of the unfair circumstance that were given were superficial such as, “So-in-so lives next to Universal Studios and gets to go every day. My friend just got a brand new I-phone and mine is two years old.” It hit me today that Zoey’s life, however, is truly UNFAIR.

Zoey has 2q23.1 microdeletion syndrome (due to a macrodeletion of 7.29 MB of DNA on chromosome 2) , White-Sutton Syndrome, Cerebral Palsy, Autism, Dysphagia, Sleep Apnea, Non Classical Congenital Adrenal Hyperplasia, insomnia, gastroesophageal reflux disease, chronic constipation, impaired speech, fine motor delay, gross motor delay, a g-tube, orthotics, glasses, and c-pap machine. Life is unfair for her!

About 1.5 hours into VBS, after the umpteenth attempt at finding out “What in the world is wrong with Zoey”, I asked Zoey if I could share a few things that are different about her. She signed, “Yes.”

Our kindergarten friends weren’t ready for the laundry list above, but I told them basically that Zoey has Autism and it makes it a bit harder for her to have fun. She is scared by loud noises, too many people, and changes in routine. VBS is a nightmare for Zoey! Instead, I pointed out and explained the physical things that our new friends were definitely aware of because they could see it.

1. It’s UNFAIR for Zoey that she can’t drink water like you. The water you drink goes into your belly. When Zoey drinks water with her mouth it goes into her lungs and makes it so she can’t breath. God is good, though, because he inspired doctors to create a g-tube that is like having a straw that can go straight into her belly.
2. It’s UNFAIR that Zoey can’t talk the way you can, but God is good! Zoey can use sign language to communicate and soon will have a computer that will talk for her when she pushes buttons.
3. It’s UNFAIR, that Zoey can’t run, jump, and spin during games, like you. But God is good for inspiring people to create super shoes that can help Zoey learn to move better. Someday she wants to play soccer.

Zoey seemed to cheer up after this exchange of information. She enjoyed playing with kinetic sand during Bible story time, and laughed hysterically at Simon Says during game time. She was the only kid laughing! She had me giggling because her laugh is so very contagious! A few friends nearby smiled at her laugh and I bet tomorrow she will have them all giggling.

She was even quite happy at the beginning of the closing ceremonies after we pretended to be water buffalo with big stompy feet on the way to our seats in the auditorium. She was super excited to see her older brother being a free spirit, as usual, and wandering in the front of the church. She giggled with glee as he hugged her, and Zoey didn’t even try to smack him!

During the closing ceremony the leader asked, “Have any of you ever felt that life was unfair or experienced something unfair?” Zoey signed, “Me!” That shocked me! My sweet girl is starting to realize that her life is so very much UNFAIR. When kids talk to her and she can’t communicate back because they don’t know her language, she feels the UNFAIR. When she can’t hold hands with a friend without me helping to hold their hands together (she loses grip), she feels the UNFAIR. When she can’t roll the pretty paper around a straw to make a bead, she feels the UNFAIR. She is realizing how very different she is and how UNFAIR it is. My hope is that I can continue to encourage her and remind her that God is good, and point out the good side of each unfair thing that has happened to her.

By the end of the singing, Zoey was starting to meltdown. She lay on the floor screaming and I laid down next to her because it often helps. I whispered in her ear, “I love you even when you’re upset. I love you even when you’re screaming.”
She sat back up and I held her in my arms. I wish I had added, “God loves you when you are screaming,” but I’m sure I’ll have a chance tomorrow!

I had just calmed her down when everyone responded to a question that I wasn’t able to hear because Zoey was crying. The response was a huge shout. She covered her ears in agony and started to shriek again. She cried for the next five minutes until she saw her big sister who gave her a koala bear ride. Gotta love big sisters for saving the day! At least almost…

Once we got in the car the meltdown escalated to a shrieking rage for thirty minutes! I was really upset by this because I almost felt like VBS was a form of torture for her, and I was thinking I wouldn’t take Zoey back to VBS tomorrow. However, one of my Ausome mom friends helped me realize that she had been holding back the WHOLE time! She was venting all her frustrations in the car on the people she knows can handle it. She had TRIED to keep her autistic like behaviors under control for over three hours! I love this girl for that! I’m so glad she had the chance to vent to her family how very unfair her life is.

So will I take Zoey back to VBS tomorrow? I believe I will because despite all the UNFAIR circumstances Zoey encounters tomorrow, she will grow and learn from this experience. By the end of the week, she will know that when Life is Unfair, God is Good!