Welcome to the KingZoo and Funny Farm, where we learn to live, laugh, and love together. Here you'll find snippets of life in our zoo, parenting tips we've learned along the way, reflections on shining God's light in this world, passions in the realm of orphan care, and our journey as parents of a visually impaired child with sensory processing disorder. Have fun!
Tuesday, September 20, 2016
V: Mom, you're going to have a son.
Me: I am? What will his name be?
Me: I think you got that backwards; Abraham was going to have a son and his name was Isaac but if this is a prophecy you'd better warn your father.
Abraham took his wife, Sarah, to Sarah's house and we put glue on the coat and that was it.
In Ninevah there was mean people. Jonah was really scared there. And there was grass. The fish gobbled Joshua up. He stayed in the fish for a long, long time and then he was all yucky. That was really funny. He was stuck in there. He was all grotesque and yucky. He was trying to come out but he can't come out.
The TV told Noah to build an ark so Daddy took me to listen to the drums. I was so excited.
Monday, September 19, 2016
[looking away from all that will distract us and] focusing our eyes on Jesus, who is the Author and Perfecter of faith [the first incentive for our belief and the One who brings our faith to maturity], who for the joy [of accomplishing the goal] set before Him endured the cross, disregarding the shame, and sat down at the right hand of the throne of God [revealing His deity, His authority, and the completion of His work].
Sunday, September 18, 2016
"The doctor says Victor is completely blind."
I never did like that doctor but I'm not sure if it's him or his message.
But here we are, 3 years later.
That doctor didn't know the power of prayer because around 1 year of age he showed signs of light perception and a year later he held a book to his face and told me which one it was.
And then we learned that blindness was the least of his troubles.
So now we pray for breakthrough in behavioral issues. And while the day-in-and-day-out is wearying and looks like we've made no progress, we have.
When he chooses to to bang his foot rather than his head, we've made progress.
When he responds to someone's hello not with a yell but with a quiet and polite, "I really don't want to talk right now," we've made progress.
When he allows us to comfort him after a fall rather than hitting us and yelling, we've made progress.
When he says, "Yes, Mommy," and follows through with my request rather than defiance, we've made progress.
We are exceedingly thankful for the number of wonderful people who have come into our lives because of Victor. And on my good days, I'm thankful for the lessons I am learning through Victor's diagnosis. Love, grace, joy, patience, and compassion have all been cultivated in this journey as has empathy for others walking a similar journey. And if this is what it takes for me to become more like Jesus, then this is the path I will walk.
Happy Diagnosis Day, everyone!
Friday, September 16, 2016
Thank you for your prayers. God sustained us yesterday. He was with the surgeon and all of Victor's medical team. He gave them wisdom for each step of the way. He allowed us to come home much earlier than we expected. And He is healing Victor quickly as we had hoped.
There were some typical Victor moments post-op.
Like when he woke up to The Beatles playing. His nurse said she needed more patients like Victor who listened to music from her childhood.
And when he yelled at the nurse to leave him alone (that's when we knew he was back with us).
And when he decided that his mask was the best bedtime snuggly of all and couldn't let it go far from his side.
And when he went through three bags of Goldfish and asked for more.
The popsicle was pretty good, too.
And he was shining in all of his glory when the woman came to transport him to the car and he repeatedly spit at her each time she asked him to state his name. She finally gave up. Hope she had the right patient.
A trip to McDonald's on the way home completed the new-found junk food diet and he was happy.
Until he got home and realized that his legs were still numb and those messages just could not make it from brain to feet. It was like watching a calf try to find his walking legs. He adapted fairly quickly and crawled all over the place like nothing had happened.
Until he yelled, "I'm going to get you, Hopie,"stood up to run and found himself promptly on his side on the floor. Oops.
He slept well until 3AM when he had to call me to tell me that his mask didn't smell good anymore and I needed to wash it. And his blankets had fallen out of his bed. And he needed a few more toys.
But most of the time today you would never even know that he had surgery yesterday.
Thursday, September 15, 2016
The question of the night yesterday was whether or not to just scoop Victor from bed to put him in the car at 6AM with no liquids before surgery or to wake him at 5:00 so he could have half an hour of popsicles and juice before time ran out. I wasn't worried about the ride to the hospital, but knew that the 2 hours between admitting and surgery were going to be tough. Especially on a completely empty stomach.
So I woke him. Poor little sleepy head could only down a few swallows of juice and less than half of his popsicle. But it was something. He couldn't figure out why it all disappeared at 5:30 when he was just getting started!
He was happy to find out that the lobby/waiting area echoed. I'm not so sure the sleepy patients and family members waiting with us agreed. Too bad. Maybe the louder his is the quicker they'll take him back?
He found a friend to play with while waiting and things went well until 8:30 came and went. As soon as anesthesiology came to talk to me he was done. He immediately banged his head on their solid, hard floor. They were horrified. I was relaxed. Now the patient's mother was reassuring the medical staff and a scared and crying Victor. Guess they didn't believe me earlier when I told them that he will get self-injurious if scared or frustrated or confused or denied something or...........
But to their credit they didn't run in fear. Nor did they run for their sleeping gas. Instead they asked to brainstorm about how we can alleviate his fears when I'm not around. We came up with ...
They got on it right away and had Johnny Cash on the child-friendly iPad within 5 minutes (and after only one more head-banging incident).
But then Victor requested The Beatles. Hey Jude, specifically.
Whatever you want, Your Majesty. The Beatles, it is.
And with Hey Jude playing in his hands, Victor happily followed them down the hall, and onto the bed. When it was time for a kiss and hug from Mommy, he laid back on the bed, never letting go of Hey Jude, as relaxed as could be. I only wish I had a picture of that serene scene.
And with a Johnny Cash-Beatles-Elvis-loving toddler on their floor, I think they're putty in his hands, too.
Wednesday, September 14, 2016
In other news, Victor has finally learned to crawl out of his crib. We knew it would happen someday, and were shocked that it took our climbing, jumping, physically fearless child over 3 years to get here. So, now we spend a good hour or more at each bedtime, chasing him back into bed. So far, he hasn't left the room, although while camping Labor Day weekend we did find him half out of the tent before he was caught. He may not leave the room, but there's plenty to get into in there... toys to play with, diaper bags to empty (and snacks to find and eat), a chair to finally fall asleep in, or...
...shirts to wear as shorts. He was still awake when I found him so I asked if he'd like me to take his "shorts" off but he told me he liked his jammies.
Monday, September 12, 2016
Well, lots of things, not the least of which is the word American set before Christian. But those are lots of posts for lots of other days.
One of the problems that I see a lot is that when a Christian in America receives a clear, God-given call to serve the vulnerable (whether through ministry to those caught in sex trafficking, through orphan care, meeting the needs of the homeless, or any number of ways) but then faces hardship, that person is told by other Christians that he got the call wrong. Or maybe she's doing something wrong. Because, the speaker implies (or states), God wouldn't call you to a task so far out of your comfort zone, something for which you find yourself crying out to Him and others for help; He wouldn't give you a task that brings you chaos and tears.
To which I say, "Find me a hero of the Bible who didn't struggle in his calling."
A few months ago, I received two messages from two friends within a few days of each other. Each of these friends is on the front lines of ministry. Each of them heard the call, and followed it, and now finds herself and her family in chaos. And each of them said that she is afraid to share this with her friends because she knows what the response will be, "Well, maybe you shouldn't have brought so much on yourself," or "I tried to tell you this would be too much for you," or "That's what you get for thinking you can save the world."
To which I say, "Jesus started His ministry with these words, 'The Spirit of the Lord is on me, because He has anointed me to preach good news to the poor. He has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to release the oppressed, to proclaim the year of the Lord's favor.'" (Luke 4: 18 - 19) He then spent the next 3 years modeling this for His disciples and for us and later urged us to 'God and do likewise.'"
Never, ever did He promise us that by saying yes to Him our lives would be easy. Instead, following Him means that our lives will be messed up. And it's good.
But it doesn't ever make it easy.
This morning I was reading the story of Moses and the battle with the Amalekites in Exodus 17. Joshua and his army were fighting the Amalekites as Moses had ordered. As long as Moses' held his hands up, the army was winning; if he lowered his arms, the Israelites lost ground.
I've always wondered how they figured out that this was the key to their success. Trial and error, maybe? A direct word from God?
I don't know. I also don't know if their revelation was met with comments from the peanut gallery, "Moses, that's stupid. What makes you think our success in battle is connected to you? Did God really tell you to do that? I told you before you even went into this battle that there was no way you should be doing this. It's just too much work."
What I do know is that he had two friends, Aaron and Hur, who presumably offered no argument, no admonition to give up the fight, no conversation about whether or not he was in God's will. Instead, they simply brought Moses a stone to rest upon. Their role at this point was not to question or discuss, but to find a way for Moses to rest. And they were faithful to that task. And when Moses' arms got tired, they held them up. Again, no misguided lecture about a God who wouldn't give Moses more than he could handle; they simply supported his arms. I like to think that they even shared a few good stories or jokes with Moses because we all know that laughter is God's gift to us in tough times.
And when it was all over, they wrote it down so they would never forget how God led them to victory through Joshua's obedience, Moses' faithfulness, and the life-giving rest and support from Aaron and Hur.
But they still weren't finished. Next came an altar, again to remember, but this time to remember that when the Lord goes before us, when we give rest and support to those who are obedient and faithful, that battle belongs to the Lord. Think of the many times after that, as they sat around the campfire, that someone would say, "Remember that time when..." and they could share a smile and a few laughs together, remembering the obedience to the call, the power of the Lord going ahead, the rest and support offered by the faithful friends, and the Lord's victory.
It takes a village. And everyone is called to join in the mission.
Tuesday, September 6, 2016
He survived. And so did I (but barely). Team Victor was missing only his OT (and that was because we decided that we didn't need one more person in the room today).
Arrival was shaky. we decided to skip the putting the backpack on the hook part of the routine. Not happening.
And who was worried about whether or not he'd use the potty at preschool? (Me.) Within the first five minutes, everyone in the room knew that Victor was headed for the potty. Success. Publicly.
But it's not as if all of their eyes and ears weren't already on him because his entrance at the end of circle time was an entertaining one. There was going to be no Victor in that compliant circle-sitting group. And he let it be known by not just a little bit of yelling and head banging and floor rolling.
Free play found him throwing little colored glass beads (from the light table - no surprise that this is the first object that caught his eye) and swiping the whole basket of crayons right off the table (my apologies to the little girl from our church - and her parents - who saw the whole crayon episode and looked at me with horror). Oh, and sneaking a bit of play-doh down the hatch.
He told his TVI to shut up and when she told him that it hurts her heart when he says that, he whispered it. Maybe words can only hurt when they are spoken loudly?
Sensory and anxiety and frustration overload came at snack clean-up when he was a bit confused about where to put his cup (dish pan) and napkin (trash can). So, he and his behavioral specialist spent a few minutes in the cubbies (where Victor ended up) while Victor yelled and rolled and banged his head. Out in the main area, the rest of Team Victor decided that I would just take him home when he was done but after 7 minutes (yes, we counted), he sat up and nicely placed his things where they belonged and announced that he was going to join the rest of the children on the playground. So we did.
And there were some glimmers of hope.
After the throwing incident at the light table, Victor decided to play McDonald's with me. I was able to get him to play McDonald's with the other child and student teacher who were also there. The other little girl was a beautiful example of the graciousness of children; she didn't miss a beat and ordered herself some McDonald's chicken which Victor happily supplied to her.
He joined a few children at the housekeeping area. Of course he then picked up a pretend pot and banged it on the table. Then another child joined in. Who says Victor isn't a leader? They'll all be accomplished drummers by the end of the school year.
He voluntarily joined the line-up for pre-snack hand-washing, found an empty chair on his own, and sat down nicely for all of snack. At this point all of Team Victor was a bit misty-eyed.
And he had a lovely time on the playground.
On the way home, when there were a few tears shed (mine) he told me to calm down and take some deep breaths.
Funny, that's what I used to tell him in the NICU.
And tomorrow we get to do it all again.
Friday, September 2, 2016
But we all know Victor, and knowing Victor, we knew that the only way this could work would be for him to have a one-on-one assistant. In our state, this means a TSS. I started the process to have him evaluated.
Stepping forward in faith, the Good Doctor and I set out to find a preschool that we could feel good about. We knew we wanted a Christian based preschool but beyond that, we had no idea where to start. Who would even want a 3 year old that bangs his head, bites his arm, and spits at you? Especially at a Christian based preschool where the pay is even lower than low and they aren't paid enough to consider purposely choosing to accept this challenge. But I made a mental list of local churches that have preschools and prepared myself for some difficult phone calls. My first move, however, was to fill out an on-line application for the preschool at a local Christian college. I was honest on the application. I didn't expect a response.
But I got one! And she wanted to set up a visit and tour. We were blown away. Not only were they willing to talk with us, not only were they willing to accept Victor in their program, but they were enthusiastic about having him in their school! I couldn't believe it. They were thrilled at the opportunities it would bring to teach empathy and compassion in the other students and looking forward to the opportunities this would give their student teachers. We never visited anywhere else.
Stepping forward in faith, because now I not only had to have him potty trained by fall, we had to be approved for a TSS, we sent in our deposit.
And then I was at the college as a guest parent speaking to students in a special education class when the preschool teacher asked me if I had heard what was going on behind the scenes. I had not but what she told me brought tears to my eyes. On Victor's behalf, some very special educators at the college were thinking outside the box. They had found a student with interest in early intervention as a career, who could gain experience by serving as Victor's intern for a semester. As time went on, it got even better. Victor now has an intern just for him, one for the first semester, and one for the second.
And that TSS to assist him? We were approved in June.
We're still waiting to be assigned an actual person.
Stepping forward in faith, Victor, HopeAnne, and I met with his team one morning last week. His teacher of the visually impaired, orientation and mobility instructor, occupational therapist, preschool teacher, and the professor of special education who will supervise the interns all sat around in a circle with us. Victor was clearly overstimulated and anxious. His spinning made all of us dizzy. His spitting made us all damp. But we weren't told to leave. They didn't try to shorten the meeting to just get us out of there. And afterward, an email was circulated among all who had attended, suggesting that Team Victor (there was even a suggestion of matching T-shirts) was ready and willing to accept the challenge.
Victor will start preschool on a shorter schedule, arriving after the chaos of all of his peers with weepy parents and anxious kids. He'll stay as long as he is able each day. We'll increase his time as he is ready. And the first 2 weeks, while the interns complete classwork, I'll be Victor's assistant. Pray for me.
Would you join Team Victor by praying for his transition and his year? You should probably be in prayer for all of the other members of Team Victor who will be in the trenches with him either full time or flitting in and out of his class as they work with him weekly. In faith I believe that this is the right thing and the right place for Victor. But it is all in the hands of a child whose behavioral specialist has "Victor will comply 60% of the time" as one of his goals. We're aiming high here, people. Aiming high.
But one thing I know for certain, Victor is wanted in this preschool and he will be loved. For who he is. Plain and simple.
Isn't that how Jesus would love the children?
"God's deepest desire is not that we would help the poor. God's deepest desire is that we would love the poor; for if we love them, we will surely help them." - Richard Stearns, Unfinished
Poor, vulnerable, lonely, widowed, orphaned, disabled - the least of these. Yes, if we love them we will help them.