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!
Monday, September 30, 2013
Heidi Baker and her husband, Rolland, are missionaries in Mozambique and founders of Iris Ministries. Heidi has also prayed over many who were once blind but who now see. The question was asked, "Do you think you should try to get in to see her?"
But her conference was full.
So we tried the friend of a friend of a friend who was on the planning team.
And we found out earlier this week that the door was shut.
The question came back, "Do you think you should try another method? Wait for her in the parking lot, perhaps?"
I prayed. Oh, how I prayed. And we fasted along with many friends and family members. Fasting for Victor's sight, to grow closer to God, and for clarity in this situation.
Finally, the response came to me, "You have to ask."
Whether or not Victor ever sees doesn't matter to me. I love him as he is, I know he is our son, and we will do whatever we need to do to give him the best chance at life. But if we have not because we ask not, then I need to ask. If we don't see miracles because we don't ask for them, then I need to ask.
So we went to the conference at the time we thought Heidi would be ending her talk. We walked right in without a ticket. And she had just gotten started.
(Father, forgive me for I have sinned - walking in without a ticket and all. On the other hand, I'm certain Jesus never charged money when He was speaking to a crowd. And to be honest, we did have a friend at home who had willingly offered to post bail if necessary. Oh, and we did park in the "Reserved for the Worship Team" parking place. I'm truly sorry. On the other hand, I guess the event organizers can be thankful that our friends didn't cut a hole in the ceiling and let us down with ropes.)
We listened to her speak, and speak, and speak some more, and say she was about to wrap up, only to repeat that again 40 minutes later. She spoke on compassion and joy and the Holy Spirit and evangelism.
And then the session was over and we did our best to push through the crowds, step over those slain in the spirit, only to get closer to Heidi. We inched our way. A man asked if he could pray over Victor. He prayed that blind eyes would see. We inched closer. A woman carrying a baby asked if we wanted to get to Heidi. She parted the way for us to inch closer. Finally we were on one side of the podium; Heidi was on the other. One of the event leaders came and asked us if we wanted Heidi to pray for our baby. She then led Heidi right to us.
She sat down and she took Victor in her arms. And my baby, who has a difficult time settling down, slept soundly in her arms for the next 15 or 20 minutes while she ignored the crowds to focus on us. She reminded us that the same Jesus who healed the blind, loves our son and can heal him, too. But she mostly spoke to us of adoption, and love, being forerunners, and bringing our story to many. She held our hands and looked at us with love in her eyes. She silently prayed. Then she touched her finger to her lips and touched Victor's eyes.
Heidi Baker isn't the focus of our worship. But she serves the same God we do, one who still does miracles today. And she has the gift of healing. We had to ask.
And Victor slept through the night, from that moment until 6:00 this morning. That has never happened before.
This morning, a friend who works for the airlines had the privilege of checking Heidi Baker in at the airport and they talked about our precious Victor.
These are not coincidences; these are God moments. Each and every one orchestrated by Someone bigger than all of us and all of our circumstances. Each one a miracle in itself.
We have to ask.
Friday, September 27, 2013
As I've wrestled with the American Church and wondered how much of it is what God really intends, I've come to believe that there are two necessary ingredients which come from the first Christians.
The first is sold-out service, or radical giving of ourselves to those who are hurting, the subject of another post for another day.
The second is community. We need to encourage and support each other as we live out our lives of service to others.
I have never experienced community like we have experienced it during our journey to Victor Noah.
The first time we stepped out in faith, many in our faith community turned on us. They questioned why we were doing what we were doing. We struggled in an environment where the leaders around us didn't ask, "How can we support you as you follow God's call?" They weren't excited to see where God would lead. Instead they got angry and others followed suit. Looking back, it was a time of tremendous growth and leaning on Christ but in the moment it was the most difficult time in my life. I also believe it was necessary to go through that in preparation for the journey we are now on. It was moving higher on the ladder of giving Christ total control and trusting His ways even though we can't see the outcome.
This time, when we stepped out of the boat, the response has been the total opposite. While a few have questioned our actions, it was done lovingly and with a desire to understand where God is moving. The support has been overwhelming. We have experienced Community with a capital C.
Each member of our supporting Community has acted out of his/her strengths, gifts, and availability. Some brought meals, some provided transportation, some donated money, and some cleaned. Others taught lessons, donated services, or threw in a load of laundry.
And you prayed. I hope that in Heaven we can "see" the power of all of these prayers. We have felt them, we have seen evidence of them, and someday I'd love to know them from God's perspective.
But then the call came to fast. And again, the Community rose up to support us. And for some of you, this fast is bringing trials that you certainly didn't ask for. Yesterday's post brought numerous Facebook and email messages. Satan is doing his best to block this fast. He has tried to block this little boy's life from the very beginning but prayer has allowed him to be victorious and to amaze. But that's not just Victor's story; it's your story, too. God has great plans for your life. You are here to let His glory be known. Fasting is drawing you closer to Him and Satan does not like it. Press on.
And now I have one more request from the Community. The vision therapist was here today and talked about different toys and repurposed items that will be useful in developing Victor's tactile and auditory senses. She mentioned a quilt of various textured materials from silky to rough, from knobby to smooth. I have some textured fabrics but I'd love more. I could spend money to buy some but I'd rather not. I'd love to have donations from any of my sewing and crafty friends so that Victor's quilt is not just textures to feel but representative of the love of the Community. I don't need much, just a swatch big enough to cut out a 6 in. square. Color doesn't matter; the texture is key. What fabric do you have left-over from that creative project? Anything other than cotton calico fabric. Ribbons, too. Pieces long enough to make hooks for him to hold and to explore. Bring them on! Let's make Victor a Community Quilt!
Thursday, September 26, 2013
Secondly, I'm sorry.
Thank you for joining us in fasting and prayer for Victor's sight. There are at least 30 people storming Heaven's gates for the miraculous healing of Victor's eyes. There are probably many more that I don't know about.
Our senior pastor wrote these words in his weekly email:
I love the picture the Apostle John paints for us in Revelation chapter 8 verses 1-5, about what happens with our prayers:
These verses from Revelation come to mind in the context of two “prayer events” I’d like to share with you this morning…
But you know, I've had this sense that this time of fasting and prayer is as much about each of our hearts as it is for Victor Noah. His healing may even be secondary.
So I say I'm sorry because I know that some of you are experiencing spiritual attack in the midst of your prayer and fasting. Trouble at work, sickness, unexplained anger, Facebook attacks and distractions, I've heard of all of these just in the first day.
Friends, press on. Play some worship music. Pray more. Send your prayers Heaven-ward while you allow God to do some heart work. This is all about His glory, it always has been and always will be.
Wednesday, September 25, 2013
Me: You were? Why didn't you call me? What were you crying about?
HopeAnne: I was thinking about Victor's eyes and I was crying.
Once again I am both humbled and amazed at the responses of our friends and family. You have embraced Victor, his story, and our family. You've cried tears for him. You've shouted that this is not fair, he's overcome so much already! And now many of you are willing to fast and pray for him, each in his/her own way.
Our God is a God of miracles. I believe that. I believe that He wants us to ask for Victor's sight. He is calling some of us to fast for Victor's sight. I believe that He can do immeasurably more than we ask or imagine.
I also believe that He wants to do a work in each of our hearts and this is about so much more than Victor's sight.
Thank you from the bottom of our hearts.
Tuesday, September 24, 2013
Saturday, September 21, 2013
Funny, since when John and I were dating, I was the one wanting to adopt a house full of special needs children. The Good Doctor wanted nothing to do with it.
Warning: If you plan to marry someone with God-given plans, you can pretty much assume God is going to change you, too. Just ask the Good Doctor.
But I'll admit that this wasn't in my plans. I had my special needs plans all planned out - Down Syndrome, Check, I've worked with many children in this category and just adore them. Deafness, Check, John and I sign, the kids sign a little, and we are familiar with Deaf culture.
Blindness? Um. I read a book about a blind man who walked the Appalachian Trail with his guide dog. That's about all I know.
And then, every time my mind starts going down the path of, This wasn't in my plans, I have to remind myself that I'm not in charge of the world (controlling people need to remind themselves of this quite often). If I were, what a mess that would be. I can think of plenty of times when my need to have my life planned out goes awry. Planning for a family of ten isn't always easy, either. So, if I had to orchestrate the events of everyone on this planet, whoever was, and is, and will be? Well, of course there's no way.
That's where my hope lies. I know that I can trust the One who does have it all under control; the one who knows my comings and goings before I plan them and who orchestrates them exactly so that He receives the glory.
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.
Jeremiah 29:11-13 is spoken often, and often out of context. Someone handed them to me in church, written on a small slip of paper, earlier in our adoption journey. I needed them that day and they are just as relevant today. God's intent is never to harm us, only to give us hope and a future. A future with an ending we already know; a future where Victor receives his sight and none of us will suffer anymore. That's some planning I'm waiting for!
This is part of the plan for Victor and for us and we can walk forward confidently. He is ours and we are his family. Love. Redemption. God's plan.
And then to confirm it, I just read a letter from friends at church. It included the words to a song I had never heard before called Promise, performed by Liberated Wailing Wall. How fitting!
There's no hope that is too high
For a love that covers the skies
The quiet whispers in your heart
May be a light in the dark
Don't you know what I can do
Oh, the plans I have for you
Plans to prosper to make you grow
Plans for you to make my light show
Plans to make your dreams come true
Plans for your life I give to you
Desires no one knows
I'll open doors no man can close
Live your life, watch what I'll do
'Cause oh, the plans I have for you
When you pray I will hear
If you search I will be near
Gather and restore all your land
Oh, the plans that I have planned
I'll bring you back again
Live your life, watch what I'll do
'Cause oh, the plans I have for you
Thursday, September 19, 2013
"You are braver than you believe, and stronger than you seem, and smarter than you think." Christopher Robin
I sing because I'm happy,
"Let not your heart be troubled,"
Whenever I am tempted,
Wednesday, September 18, 2013
We just received the devastating news with a diagnosis on his eyes. Victor's eye exam which had been scheduled for next Monday was moved up to today because the doctor felt it was necessary to see him earlier rather than later. John was able to rearrange his schedule to take Victor. I am so thankful for this as these torture sessions are very difficult for me. God also ordained for John to hear the words from the doctor and to be the one to give them to me. I am also thankful for that.
Even though the doctor did say that Victor reacted to light at the last appointment, I've had my doubts. Sometimes he seems to do so, other times he doesn't. I've even seen him "look" directly at the sun with no reaction. A therapist this week also pointed out that when you move your hand quickly toward his face, Victor does not blink or turn away. She explained some of the optic nerve to us and that was very helpful.
The pediatric ophthalmologist's tentative diagnosis is bilateral optic nerve hypoplasia with "significant visual impairment." At this point, you probably know as much about this as we do but that is about to change. Here's a summary. We are about to become central PA's leading parental experts in this condition.
Interestingly enough, there is no connection between this diagnosis and Victor's prematurity. There is likely no explanation.
While we are grieving this diagnosis as well as grieving an "easy" or "normal" life for Victor, we love him no less than before this news. In fact, I think we'll all hold him a little tighter today. Only time will tell how much vision he actually has and if he is affected in any other ways. God has plans for this little boy.
Please pray for us today. Pray for Victor as he recovers from yet another eye exam that leaves him exhausted. Pray for us as we see more professionals in the coming days, including a pediatric endocrinologist.
Pray for minimal neurological, adrenal, and even visual impairment. Pray for miracles.
Pray for me as I determine how best to share this with his birth mother who loves him dearly.
Pray for each family member who is going to have to grieve this and work through it in different ways. Pray that this brings us all closer and that Satan would not be allowed to use this to drive a wedge between any members of this family. Pray for extended family members and friends. They didn't receive the call or choose adoption; we did.
And already, we see God at work. In our early intervention meeting a few weeks ago, we discussed the concerns about Victor's eyes. Without a diagnosis at the time, we didn't qualify for vision therapy but it was decided that they would try to assign us a developmental therapist who is also a vision therapist. And it is so! We saw her, along with our physical therapist, for the first time on Monday. We love them already! She is the one who noticed that Victor doesn't flinch when an object approaches his face. Since she has 20 years experience working in a school for the blind, we know that she is God's gift to us for these next days, weeks, and years until he is no longer in early intervention.
I want to share one more prayer request that is one we don't talk about a lot. We were assured by the hospital social worker (in Utah), even before saying yes, that Victor would be able to qualify for medical assistance because in his words, "Not even the wealthiest family can afford a NICU stay." However, we were initially denied. Paperwork was resubmitted and just last week we learned that it has gone from supervisor to supervisor but no decision has been made. As you can imagine, those hospital bills keep coming and they are piling up quickly. And now we know that there will be many more doctor's visits and tests in Victor's future. We will do this and we will do this with joy, but we do not like having this hanging over our heads. It is possible that this diagnosis will speed things along and that will be very helpful.
Thank you for walking this journey with us. Continue to pray for our Victor Noah, that he may live up to the name he has been given - Victorious Long Life of Faith in the One True King!
"Open my eyes, that I may see
glimpses of truth thou hast for me;
place in my hands that wonderful key
that shall unclasp and set me free.
Silently now I wait for thee,
ready, my God, thy will to see.
Open my eyes, illumine me, Spirit divine!"
-Text and music by Clara H. Scott
Tuesday, September 17, 2013
Part of determining which activities to choose for each child has been the desire to see each of them excel in the areas where they are most gifted. Every one of us likes to feel good about ourselves and receive praise for a job done well. No one likes to sit on the bench every game, fail at a task over and over, or feel unskilled at a task. Our job as parents is to help our children find their God-given gifts, to help them hone those skills, and to find ways to use them for the Lord.
So when we noticed that this girl was built like a runner and also enjoyed running, we began to look for opportunities for her. She enjoys running with her older brothers. The oldest two have each taken her on runs where they let her set the pace and the distance. She has gone a mile or more on these trips and ends with energy to spare. We knew she was physically ready for a race but didn't know if she was emotionally ready. I heard about the Healthy Kids Running Series and decided to give it a try. I liked their laid-back approach with an emphasis on being healthy rather than winning. We signed her up.
And she ran.
And she won. (See it here)
She ran with the legs God gave her. She ran with the speed God gave her.
And she made me cry.
This is redemption. This child who struggles with identity. This child who struggles academically. This child who struggles with anger. This child who struggles with new situations claimed this new situation for herself. She used her gifts and flourished.
The mother of another participant came up to me and said, "That's not fair. She won by a lot. She should run with the kids older than her."
No, you don't understand.
It's not about winning but this win did more for this little girl than you can imagine.
These are the moments I wish I could share with her birth mother. We lost contact with her a year ago. I would love to be able to send these pictures and thank her. Thank her for giving her daughter life. Thank her for making the tough decision to voluntarily relinquish her rights. Thank her for the beautiful letter six years ago gifting HopeAnne to us and us to HopeAnne. I would love to show her that Hope is thriving. I would love to show her how Hope is serving others. I would love to ask her if this is a skill Hope received from her. Maybe someday.
For now, we are thanking God for this daughter of ours. We are thanking Him for the unique gifts that are packed into this beautiful, strong, fast girl of ours. And we are asking Him to show her how she can use this talent to shine His light to others. Because isn't that why we're here?
Saturday, September 14, 2013
Friday, September 13, 2013
Know what that means?
It means that Li'l Victor is 5 months old!
If he were still in the NICU he'd get a nicely made sign to celebrate. They were so good about these things.
No time for that here. But we certainly are celebrating this special life!
5 months sounds like a good time to start sleeping a little longer at night, doesn't it? That's what I'm praying for!
Thursday, September 12, 2013
These are not the sounds you expect to hear while feeding the baby in the middle of the night. Especially when you are on the first floor of the house. And the room where the noises are coming from is not under a bathroom.
My sleep-deprived mind first thought a gerbil must be lose. They do live in that room and this is a pleasure we've not yet had. I knew it didn't sound exactly like that, but while sitting in the rocking chair in the room next door, I couldn't wrap my midnight-mind around it.
When Victor was ready for a break in eating, I went to investigate. Standing in the room with the light on I knew I was in the right room but it still took a few moments to realize that the noise was a drip and the drip was coming from the ceiling. But with no bathroom above it? No storm outside? What could be going on?
Let me pause to say that there is one time when it's a good thing that your girls are messy. The pile of clothes in the middle of the floor caught some of the drips and most of the drips? They had landed on one of the very clean but used-for-a-doll-preemie-diapers that had been sent home from the hospital with Victor because they were too small. It was perfectly positioned for the task.
I, of course, woke the Good Doctor whose sleep deprived brain functions worse than mind. I'll spare you the details.
He made his way to the floor above to investigate. The two upstairs bedrooms each have their own air conditioning unit. Each unit's run-off drains into PVC piping that runs the length of the house through the upstairs crawlspace. Apparently one of those connectors had never been glued and after several years had begun to sag and leak.
It was clear this had been going on for quite some time. This crawlspace is where we keep our out-grown, waiting to be hand-me-down clothing. One properly placed bag had been turned into a mold growing experiment while we waited unawares for tonight's overflow to begin. When our younger girls get to size 14/16, don't be surprised if they don't have too much to wear. That bag received our thanks but was promptly given a proper burial.
You know, I've heard these stories over and over again among our adopting friends. The furnace breaks, the basement floods, the cars stop working, formerly healthy bodies fail us. Redemption is costly in so many ways. Since we began this journey with Victor, we've had a cancer scare, each of our vehicles has been in the shop - some several times, and now this.
But we don't give up. We press on. We trust. This comes after two miraculous gifts from God this week. We received the gift of a full size mattress for a double bed that had been using a twin mattress (yes, it did look funny but it was functional so who cares?) and Mariana received a much-needed scholarship to cover her camp deposit for next year. These gifts did not randomly arrive just days before our middle-of-the-night set-back. God sent them at just the right time so that my now wide-awake brain could say "thank you" and remember that God is good. All the time. All the time. God is good.
So what do we do? We pray. We make sure we're prepared. We cut back where we can. We make cookies.
Not for us, Silly. Even before tonight's mishap we had decided that it's time to start fundraising again. Our adopttogether site has provided us with 1/4 of our adoption expenses so far and for that we are so thankful! During the month of October we will once again be making pregnant cookies (because we were, after all, expecting) - an Oreo stuffed inside a chocolate chip cookie. Be thinking about a college student or someone away from home or even just a friend who needs a pick-me-up. We'll post the information soon and will be taking orders. We'll mail them anywhere in the US. Who can you bless and contribute to Victor's homecoming at the same time?
My friend, don't give up when living in God's Will. Press on.
Galatians 6:9 Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
We know the end of the story!
Tuesday, September 10, 2013
Growing up I always wanted stitches or a broken bone, any reason to go to an ER. I was a child, okay? My brother broke a bone or needed stitches at least once a year; it seemed like fun. I tried very hard, in many different ways, to break a bone but it never happened. I remember gymnastics being a common limb breaking attempt but I never succeeded. And I never split the skin enough for a frantic visit to the ER, a long needle, and a couple of sutures.
But in 8th grade, I finally got my wish in the weirdest, round-about way. I was sitting in science class and my pencil dropped. I reached down to get it just as it bounced off its eraser and was on its way back up. When I lifted my hand, there was my pencil with the point jammed well into my palm. I removed the pencil but the point stayed. I took the obligatory trip to the nurse, got cleaned up and was given a band-aid, and returned to Mr. Moyer's boring lecture. (Note: I don't remember the specific lecture but I know that all of Mr. Moyer's science classes were boring so I'm sure this was the same.) I thought it was the end of the story.
As the days went by, however, that tiny pencil point became a thorn in my flesh. As I recall, my parents finally took me to the doctor (a surprising twist as I never went to the doctor except for yearly visits who suggested a visit to the surgeon would be in order. The surgeon decided the point had to come out (of course he did, that's how he earns his income) and that he could take care of it in his office. A shot of Novocaine and a lot of blood later, he changed his mind. That point was in way too deep and wasn't coming out. Thank goodness pencils no longer used real lead! He stitched me up and sent me on my way. And that's how I got my one and only childhood stitch (not counting surgeries). Boy, was I ever proud of that one stitch! I had my mom take a picture of my highly bandaged hand. It was beautiful.
The point is still there.
Monday, September 9, 2013
Good question. And one that I've been asked repeatedly. With good reason, since I did ask for prayer for his eyes but then never gave an official update after his last appointment.
First, the good news. The pediatric ophthalmologist did see Victor "wince to light" during the last exam. This tells us that something is happening. The bad news is that he is definitely delayed in his vision cues so we're really not sure how much he is seeing or if he is seeing more than light and dark. The very kind and knowledgeable folks from Early Intervention were here this week to do their initial evaluation. They agreed that Victor is delayed in focusing on faces but explained that some children need to "learn to see" and that maybe Victor falls into this category. They have already given us strategies to try at home to see if we find improvement. Victor also has a follow-up torture appointment with the eye doctor who will once again do his best to look inside a small moving target. That visit is scheduled for Sept. 23 and I will try to update quicker next time. As you can imagine, my opportunities for writing have gone down exponentially since leaving Utah.
The physical therapist also noted that Victor has hypertonia in his legs and hips (which had been mentioned in the NICU as well) but has low muscle tone in his arms. These are all areas that the physical therapist will work on, and will teach us exercises and games to do with him. We should be getting phone calls this week from both a developmental therapist and a physical therapist. They will come once a week, on alternating weeks. It's it bad that the special ed. teacher in me is looking forward to these visits? I can't wait to actually have more tangible therapies to do with Victor. I have lots of little helpers here as well.
Pray also for Victor's reflux. Reflux is pretty much a given with a micropremie and while those cheeks and chins prove that a lot is staying in, my laundry pile can attest to the fact that a lot is coming back up! Sometimes he is a "happy spitter" but other times he is clearly in pain. Pray for complete healing.
Tuesday, September 3, 2013
We took Mr. Victor outside to enjoy the beautiful weather today. He loved it!
Taking after his older brother, Andrew, he decided to enjoy some time as Superman and explore the skies above the city.
Next he explored underwater.
But then we ran out of driveway so we'll have to wait til after it rains to give him more adventures.