Big Houdini

It's hard to believe it's a little less than a year since we received the email that started with these words:

"I'm sending a unique situation over.  _________ had a hispanic baby boy on April 13th. She has named him Noah. He weighed 1lb 13oz and is in the NICU. [Birthmother] has already relinquished but is still in our birth mother housing until she chooses a family. I texted her case worker today for an update on Noah. Last I heard, he was surprising all the nurses & nicknamed the little fighter in the NICU. He is a little famous cutie in there with with an adorable head of dark hair." 

"Little fighter" was just one of his many NICU nicknames. The Vic-man, Mr. Victor, Peanut, Little Peanut, and the list goes on and on. In those first days it seemed that each new person I met had a special name for this special baby boy.

One of the feats Victor was known for was wriggling out of the positions his nurses so lovingly placed

him in, surrounding him with bumpers and pads to contain and keep him comfortable. His favorite

position was on his belly but he'd kick and stretch his legs and push himself up and over the carefully

placed positioners.  On more than one of these occasions, Little Houdini was what he was called.

Well, Little Houdini is now Big Houdini. He's still exceptionally strong despite his prematurity. And that bouncy seat where I used to place him when I needed to contain him? Not going to work anymore as Houdini has figured out not only how to take off the toy bar but also how to push himself up into almost a standing position, giving himself more leverage to throw himself back against the seat and make it bounce down to the floor and rebound with a vengeance.  Oh well, it was fun and useful while it lasted.

Do you see what I see?

The other morning while taking a walk, a woman passed us and as usual, commented on the cute baby in the stroller. In a grandmotherly tone, she reminded all of us that the sun was in the baby's eyes. We looked at each other but none of us felt it necessary to correct the woman or to blurt out, "He's blind," to a total stranger. Instead, we said nothing.

As I've said before, the most frequently asked question is whether or not Victor can see anything at all. The ophthalmologist has said since last August that he didn't believe Victor could see anything, not even light. He based this upon his exams where he would shine a light in Victor's eyes. Victor would not flinch or squint or squirm or make any reaction at all.

While we didn't like admitting it, this was our observation as well. I have taken Victor outside in the bright sunlight and seen his eyes roll up toward the sun with no reaction. I have fed him in front of a window and moved in and out of the sunlight to see if his pupils would react and they did not. There were those times in the beginning when we felt like he got excited when the Christmas lights were turned on but that was just explained away as our own wishful thinking and Victor's excitement to be playing on his back.

On Friday, we visited a park while waiting for Andrew to finish his last class before spring break so we could head home. Just before leaving I put Victor down on his back to change his diaper. I even thought to myself, It's awfully sunny but it won't matter to Victor.  But then I noticed something. Isaac was standing above him and was partially blocking the sunlight. When Isaac moved and the sun fully hit Victor's face, he squished his eyes closed. I told Isaac to stand there again, and then to move out of the way again. Victor again clearly closed his eyes tight against the light. John came over and observed the same thing. He ran for his ipad so we could document this reaction.

Back in the van we told the just-awakened Mariana about what happened. She nonchalantly said, "Oh yeah, the same thing happened to me this morning." She explained that when she fed him breakfast, they were sitting in front of a row of full length windows and the sun was shining in. He was fussing and not eating. She wondered whether it was the sun in his eyes so moved him and sure enough, he calmed down and started eating.

When Heidi Baker prayed over Victor, her words were that his healing would be a progression. And last week at church, there were more prayers for Victor's ultimate healing.

These are the things that make you go, Hmmmm..... and ponder them in your heart.

The healing of the blind man

Victor and I usually stand in the back of church during the singing time. He's still not allowed in the nursery due to his immune system and he's usually too noisy to be in the quiet portions of church so he and I hang out in 's office. This is one time when having a husband for a pastor becomes a good thing. Yesterday, probably because the time change messed him up, he fell asleep during the singing. I thought this was wonderful; I could just sit in the back and enjoy the rest of the service.

Then the pastor stood up front and the title of his sermon was on the screen behind him, "The Healing of the Blind Man." My heart sank. This one hit a little too close to home. Did I want to stay? I was already there, had already made myself comfortable, and did I really want to just go to the Good Doctor's office to hang out with a sleeping baby?

I know the story all too well. Since Victor's diagnosis I've returned to it numerous times looking for hope for his blindness.  Who sinned? This man or his parents? Neither. This happened so that my glory might be revealed.

Throughout the service and during the prayer time afterward, several people came to faithfully and obediently pray over Victor, each one following that nudge from the Holy Spirit, to follow when told, "Go."

The combination of their prayers was a beautiful picture of God's love for Victor. Many prayers went up for his complete healing. One woman felt very strongly that the Good Doctor had a special anointing for healing that day, whether it was for Victor or for someone else, she didn't know. Another saw the image of an angel with wings flapping, possibly on the move, in the corner near us. She prayed for my moments of turmoil; times wavering between faith that God can heal and the knowledge that His glory will be revealed regardless of the earthly outcome. Prophecy was spoken over him, speaking greater gifts of healing into him. Victor's name will be realized, he will see into people and God will heal others through him. A difficult morning, yet beautiful, too.

I would love for Victor to be healed but ultimately, my desire is that God's glory might be revealed through Victor.

Father, I believe. Forgive me for my unbelief.

Texturally decorating

How do you decorate the nursery for a child who is blind?

Never thought of that, huh?

Well, I didn't either. And I'm challenged in the regular kind of decorating.

Long before Victor came home, long before we knew Victor was blind, I got these pictures from someone in our adoption group, framed them, and put them on his wall.

They say, "We prayed for you...we waited for you...you are home and you are loved."

I love both the images and the saying. But Victor will never see them. I thought of trying to add texture to these pictures, and I might still do that, but what else could I do?

For the first children, the nursery had a Noah's Ark theme.  Yeah, I know, why use a story about death and destruction to decorate a baby's bedroom?  I don't know. It obviously has more to do with the cute animals and for me was focused on the theme of promise.  The only problem was that we had given most of our Noah's Ark items away after Child #7 and what's left is in the deep dark recesses of the attic. Should I get it out?

I didn't. Someone from church offered to donate her old Noah's Ark themed nursery set.  Funny, it was the exact same sheet pattern I'd had originally.  But again, Victor can't see it.

I will randomly go on etsy.com or ebay.com and type in "blind" or "braille" and see what comes up. One day on etsy I found an antique Braille Bingo board. It was clearly handmade. The seller noted that she had two of them so I asked her about selling both of them together. She agreed. Then I saw that she was also selling an antique abacus. Perfect! Wall decorations for the room of a blind child, which can double as toys and learning tools.

The walls aren't really this color, they're more gray-blue.

And the sweet seller from California sent the package with not 3, but 4 items, an extra abacus for her new little friend, Victor, which is on the opposite wall.

I wonder what will show up next?

Soaking

"Just keep soaking him in the presence of Jesus."

We were at a wedding and a woman from church came up to Mariana who was holding Victor.  This woman began praying over Victor. She said, "I just feel the presence of Jesus so real right here."  And then she told us to just keep soaking him in the presence of Jesus.

So that's what I try to do. One way I do this is to have worship music playing in the room where he is.

Victor may not have sight but we are praying that he has vision.

The saga continues

There is a part of Victor's story that I haven't shared much. Maybe I've hoped it would not be a reality if I ignored it. Maybe I just didn't want to see it in print or hear the words plainly spoken.  It is this: The condition that has caused Victor's vision loss is also associated with a number of other medical conditions including, but not limited to, seizures, endocrine issues including stunted growth, mental retardation, and behavior issues such as aggression and over eating.

The ophthalmologist prepared us with dire warnings of all of these.  Thankfully the endocrinologist has so far been less concerned.  An initial exam, bloodwork, and his statement that these secondary issues are only present in 20% of the cases have helped to suppress the fear and worry.  However, there are other concerns.  It is apparent, and was as early as Victor's first bottle in the NICU, that he does not have a shut off valve when full. He will eat until you stop feeding him and I've had to do my own trial and error to determine how much to feed him.  Further, the neonatal follow-up clinic is concerned because his head circumference is growing at a much slower rate than his height and weight.

In my humble opinion, Victor has suffered enough and I don't think any of us need anything else to deal with for a long time.  But I learned a long time ago that my opinion isn't always the best one when orchestrating lives in the universe. There's a much larger picture, a battle being fought, and lives in the balance. I know I'm much better off placing this in much larger, more capable hands.

I am asking, begging, God to spare Victor from any other physical or mental hardship.  I ask you to ask for the same thing.

We thank you.

2 Corinthians 4: 17-18 “For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever. So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

Understanding, part 3

Yesterday was the third, and final, installment in our unit on understanding blindness.

We talked about sports that would be available to a visually impaired person and how others might be modified.  We learned about goalball which is a sport specifically for the visually impaired.  You can see it played here.

Next, each child was assigned the name of a person who is visually impaired.  Options might be Louis Braille, Fanny Crosby, Helen Keller, Morris Frank (and/or Buddy, the dog), Ray Charles, or Erik Weihenmayer.  They were given an assignment to research their person and to create a poster presentation for the group.  The posters were to answer the following questions:

1.  Tell us something about your person's childhood, including how and when he/she went blind.
2.  Tell us something about your person's adulthood.
3.  What is your person known for?
4.  If you could choose 5 descriptive words for your person, what would they be?
5.  What does this person's life teach you?
6.  If your person's life was made into a movie, what would you call it?
7.  What is one quote from your person that you found interesting?

The children also included 3 pictures of their person and used a stylus to "write" their person's name in Braille.

The presentations were interesting and informative and we all learned that blindness doesn't have to stop someone from pursuing a dream.

Finally, we took some of Victor's board books and added textures, 3-D objects, and braille to make them more enjoyable for him.