Remembering a year ago
It’s been a while since I provided an overview of Ian’s progress. I thought it would be helpful to provide you some updates so you can be praying for Ian specifically. When we look back we can see a lot of progress, but it comes in very small increments. We forget sometimes to look back, to do a “then and now” overview, and we forget how far he’s come. So, I thought it was time to review.
A year ago if we moved Ian into another chair at all besides his wheelchair it was a big production requiring lots of help and a hydraulic lift. Tonight I got Ian up from laying on his therapy table into his wheelchair by myself without the aid of a lift. It’s not easy but Ian puts most of his own weight on his feet as I pivot him into a chair. It’s not always smooth sailing either. We tried to move him from his wheelchair at church to a regular chair and we had to move him back within a short time and caused more of a stir than I would have liked. Pray for growing strength in his muscles (particularly his legs). Pray for healing from the pain we think he still feels frequently in his back and hip. Pray that he would walk again.
A year ago we were struggling to get Ian to sit up without slumping his head or his shoulders and without drooling. Today, we have him in padded lawn furniture, rocking chairs, sofas, etc., and he does really well. Larissa is often sitting next to him when there’s room for her (and even when there’s not room for her!). Now, when he drools it’s usually a sign that something is very wrong (e.g. he’s in pain somehow or he has some internal issues). Pray that he doesn’t re-develop the internal issues that have plagued him and required regular courses of anti-biotics.
A year ago he wasn’t even close to eating anything by mouth. Eating by mouth was always a messy abbreviated experiment. Tonight after Mary chopped his food with a chopper he had a full plate of spaghetti and meatballs. His chewing is awkward but getting better and he still isn’t drinking properly. We’re trying to get him more and more to drink and he’s making slow progress. We still need the feeding tube just to get enough liquids into him but for the most part we’re not using it to feed him that way at all. Pray that he could learn to drink so we could get rid of his feeding tube, something that has provided him some discomfort. Pray also that he would begin to feed himself.
A year ago we were struggling to get him to communicate anything to us in any way. Today we’re experimenting with a variety of forms of communication because he still can’t speak to us. We’ve tried blinks for yes or no. The speech therapist has been teaching him sign language but he doesn’t always use it or doesn’t use it clearly. It can be a little discouraging trying to understand what he’s saying. Tonight though Mary asked him if he wanted parmesean on his spaghetti and after repeated attempts to get an answer he finally plainly turned his hand toward her and “nodded” his fist (i.e. yes). Pray that he would more consistently communicate with us. Pray ultimately that he would talk to us.
A year ago we were struggling with a variety of health concerns from issues with his eyes to various internal problems. The number of medications he was on then is a little mind boggling. Gradually all those issues have been resolved. The threat that always seems imminent are infections that slow any progress. Pray for protection against infections and other health problems that could discourage his efforts to make progress.
A year and four months ago toward the end of Ian’s stay at the Children’s Institute in Pittsburgh he seemed incredibly discouraged closing his eyes most of the time apparently wanting to shut out the world. Wisely, the staff there insisted that it was time for him to go home. It wasn’t smooth sailing when we got him home but looking back I’m glad we brought him home. So much progress has happened at home and for the most part he doesn’t seem as discouraged as he was back then. It has seemed over that time that he has still gone through bouts of discouragement. Pray for his spiritual health. Pray he would continue to put his confidence and joy in the only one who can both deliver him and satisfy him regardless of his condition.
Thank you for praying all this time for Ian.
Steve
In countless ways, Ian is an example of Christ to me. I was sitting in my car today, thanking God for bringing Ian and I into each other’s lives. Then I started thinking about how even since those first few days in the hospital, Ian was able to show me that he loved me. God gave Ian many ways to show me that he knew my voice and loved me, even though he couldn’t talk. For the past two years, the man who can do very little has always done at least one thing.
Ian has remained faithful in his love to me. There is little that I understand about Ian now because he can’t talk to me. I don’t know what memories he still has, I don’t know what specific sins he struggles with or what a session of therapy is really like for him. But I do know that he loves me and has remained faithful to me.
So how does this remind me of Christ? I do not mean to compare Ian to God or say that in any way Ian’s love is perfected as Christ’s is. But we are reflections of Christ and are microscopic images of our creator. And so in Ian, I see the faithfulness of God’s love: like my unknowns about Ian, there is much I don’t know about God. I don’t know when He will return. I don’t know why he has not answered our prayers for deliverance. But I do know that he loves me, made manifest and permanent to me in Christ’s death on the cross. That is what has remained when all else seems to have crumbled.
And so God has given me another evidence of his love through Ian. God’s faithfulness shown through Ian’s faithfulness. And that is only one piece of how Ian’s love has affected and changed me. I could write an entire blog about that:)
“In this the love of God was made manifest among us, that God sent his only Son into the world, so that we might live through him. In this is love, not that we have loved God but that he loved us and sent his Son to be the propitiation for our sins.” (1 John 4:9-10)
-Larissa
Here are Ian and I with another one of my favorite people, my grammy Stephens. Ian was able to come home with me this weekend for my brother’s wedding, thanks to Steve and Mary’s constant self-less-ness. I’ve been waiting for nearly two years for Ian to come home with me again and I loved every minute of it. He was able to meet a lot of my family for the first time. Even a few months ago, this wouldn’t have been possible. And the more I think about this and look at this picture, the closer I get to crying so this is it for now.
Thank you always
Larissa
It seems like God teaches me a lot about himself through the sky (Romans 1:20), particularly sunsets. A lot of times when I see sunsets, I’m reminded of truth and it usually seems to be when I most need it. Today Ian and I were driving back from Ligioner. Earlier I had told him that maybe we could drive home into the sunset. All of a sudden, this beautiful sunset appeared. I can’t even describe it and do it justice, but it was more beautiful than I could have ever imagined. No artist could have created something like that. Ian and I couldn’t have imagined something that beautiful.
I was reminded that we can’t imagine God’s beauty, or power, or holiness. It’s better than what we can fathom. And the same is true for our future promises- they are better than we could create on our own.
Thank you always for praying
Larissa
My Favorite Person in the World
We will be fasting on Wednesday the 20th. Specific request are for improved communication. Ian has been working on sign language for yes and no. It’s not always consistent but it’s so helpful. I’ll be praying that God would give him the wisdom and knowledge that he needs to be able to answer our questions quickly and without frustration. Also, that God would reveal to Ian the ability to speak with his voice.
Sorry for the lack of updates again.
“Because he holds fast to me in love, I will deliver him. I will protect him, because he knows my name.”
Psalm 91
Thank you, always
Larissa
Swimming
On vacation we were able to get Ian into the lake without much difficulty, though I thought it would be harder. Getting him out wasn’t easy. When we were preparing to get him in the water, I asked that the whole extended family be available to help, but we really didn’t need that much help. His uncle Dan and I carried him in with his brothers spotting. I put a life vest on him, and I had attached a handrail to the dock so he could hang onto it. Everyone huddled around him in the water, but it seemed we didn’t really need to do that either. After a while I left him floating with Larissa in the water.
I think he enjoyed it. Swimming in that lake has been a regular activity on vacation, so I’m sure it brought back memories. The only down side was that we didn’t quite prepare for the sun. He had to wear a fishing hat to keep the sun off of him. Poor Ian!
Thank you for your kindness in thinking of Ian and praying for him.
Steve
Memories
We went on vacation this past week to a place that would bring back a lot of memories for Ian. He sat down on the dock and watched the sunset, and he even swam in the water (more on that later). I’m sure we’ll be posting more on our time there, but I wanted to thank all the people that worked so hard for us and gave so much to us. The money raised has helped us buy a number of things for Ian, but I was reminded again of your generosity when I bought a 10-foot $400 ramp primarily so he could get up the steps to the vacation house that has provided so many memories for him. Last year, Ben and I spent two days building a ramp out of wood only to have to take it apart again at the end of the time there. We’ll also be able to use the ramp I bought to access other places equally difficult, but it was worth the money just for this experience. Thanks!
Steve
Vaca
We’re headed to Lake Anna tomorrow for vacation so we won’t be posting for awhile. We’re hoping to get Ian in the water while we’re there. We’re hoping that it will be a nice break from everything here. Pray that Ian is encouraged and blessed by his time there.
Thank you
Larissa
Water Boy II
When I reported the last time on Ian’s experience in the pool, I was reporting what I had heard from Mary and Larissa. On Friday, I went to his pool session myself and saw firsthand what they were trying to do with Ian.
His “walking” was extremely labored and he apparently didn’t do as well as when I went. Three adults were holding him up and moving his legs while I manned the wheelchair behind him. After that they stood him up on a handrail and for about 15-20 seconds he was bearing his own weight with the balance being supplied by the therapists.
When he got in the water, he had only a small “floatie” strapped to his back and water noodles under his arms to keep him afloat. They walked him in the water to get him used to the motion again of walking and they floated him on his back.
Later, they brought him to the side and encouraged me to try to get a reaction from him. Irritate him! That’s what they told me to do. I can do that! When I did, they cheered me on. So I did it some more. After a short amount of time he was looking straight at me wide-eyed pushing my hand away, grabbing my hand and pushing it away and opening his mouth wide (as if to yell at me or bite me?). The therapists were thrilled. Their theory is that if he gets mad enough to react like that, he’ll get mad and determined to get better…maybe to get back at me.
So, I’ve commenced Operation Irritation…pray for Ian!
Steve