…we know that if the earthly tent we live in is destroyed, we have a building from God, an eternal house in heaven, not built by human hands. – 2 Cor 5:5
I’ve gotten used to traveling with my three kids, as we’ve gone on several adventures in the past few years. This particular trip had us flying in to Nashville on a Saturday afternoon and driving up to Kentucky to visit my dad. My kids are fairly predictable:
Emma pretty much takes off and does her own thing. She’s a pro at navigating security and finding our gate.
Jeremiah wants to make friends with everyone, see everything, buy overpriced snacks, and play on his tablet (these are the only times I let him use it).
Most of the process is familiar to Ben, but security is always stressful for him, because everyone is so rushed. The process for taking him through the scanner looks something like this: he folds up his cane and places it on the belt, along with his shoes, phone, and backpack. The officer lets me go through the metal detector first, then has me stand on my side of the arch, face Ben, and hold out my hands, while they stand with Ben on the other side of the arch. They tell him to hold out his hands in front of him and walk straight through the scanner, and they tell him that I am waiting on the other side. Now, some of that is overkill for Ben, since he is visually impaired and not completely blind. But I suppose that’s their procedure, since they don’t know to what degree a person may have vision loss. I stood there, waiting to receive him, and imagined how that must feel to someone who is totally blind: walking in darkness, over a slightly raised platform, trusting that someone is on the other side waiting to “catch” them, but not being certain of that until they feel themselves in their arms.
That first night in Kentucky, I had tickets for Emma and me to go to a concert featuring the Christian group Unspoken. The group Northpoint InsideOut opened for them, and during one of their songs, I thought back to our time in security earlier that day. They sang,
“On the other side of everything I’m afraid of,
You are standing with Your arms wide open, wide open
Even in my deepest doubts and wonder
You are standing with your arms wide open, wide open.”
As I heard those words, I pictured Ben standing, uncertain, on one side of that security arch, and myself standing on the other side, with my arms reaching out for him. I could see everything clearly, even though Ben couldn’t, and I knew that everything was fine. I knew that, once he made it through, we would be off on our adventure.
And then I saw myself, standing in a darkness on one side of an arch, needing to walk blindly to “the other side of everything I’m afraid of,” with the trust that God is standing there with His arms wide open. But sometimes I don’t readily walk through that arch. Forgetting – or not believing – that He is there waiting for me, and that He sees what I can’t, I stand frozen on my side of the arch.
I’ve been standing there frozen for a while. Maybe that’s why I made that correlation between the song and our moment in security. Maybe it’s time for me to remember – and believe – that He is waiting for me with arms wide open. Maybe there’s even another adventure waiting for me, if I’ll keep walking to the other side.
While I believe my pen has run dry, I can’t let this season pass without posting something. Ben will be graduating in two months. What a journey it has been. I cherish the years I was able to homeschool him and Emma, and the sweet, sweet memories we have from those times. The years have brought to us the same things that all lives encounter at some point: hope, loss, grief, joy, struggle, success. I’m thankful for our God, who holds on to us through it all and never, ever leaves us alone.
Ten years ago this month, we were happily homeschooling:
… A few months later, we realized Ben was struggling to see:
… After five more years of homeschooling, we sent Ben off to the Florida School for the Deaf and the Blind:
… And in two months, he will graduate. I am so proud of him.
When I decide something needs to be done around the house, I do it. I don’t wait until I have all my supplies together. I don’t measure and plan. I should use a level, but I don’t. I just jump in and get started. Sometimes, I can MacGyver the project and get it done. Sometimes, I get frustrated when my MacGyvering doesn’t work and I’m left with a hose reel hanging halfway off the wall or a room half painted or a ceiling fixture halfway connected.
Sometimes – many times – my methods leave me with bruises and cuts. Take, for example, the day I decided to attach a new, tall bookcase to the wall. The ladder was in the garage (soooo far), so I grabbed a kitchen chair and climbed up. As I increased pressure to screw in the bracket, I changed my footing on the chair … which tipped over backward. I ended up on the floor, my legs tangled up with the chair’s legs. One of my legs was instantly swollen and bruised, and I had a bump on my head. Let’s just say I’m well-acquainted with the reality of gravity.
Sometimes, I don’t see the accident coming and I don’t have time to do anything to stop it. But sometimes, I do. Take the time I decided to switch two TV’s in our house. For one, I had to climb up on the bathroom counter and unscrew it from the wall mount. For the other, I climbed up on a small desk to unscrew it from its mount. By the time I’d climbed back up onto the bathroom counter and installed that new TV, I was getting a little tired. So while I was standing atop the desk, heavy TV in one hand, screwdriver in the other, I started struggling to hold up the TV. It was cutting into my hand. Its weight wasn’t evenly distributed and it was wobbling. I gripped it tighter, which hurt more, and because most of my focus was on the TV and my hand, I started to lose my balance. Even though the TV dug into my hand even more, I gripped it tighter and steadied myself. I did not want to drop the TV and break it, and I really didn’t want to fall off that desk with the TV. I held on through the pain and was able to finish what I’d started.
That image of me, gripping something through the pain, holding on when my nerves tell me to let go – that feeling of having to do something because I just don’t have any other choice – came to me again this week as I thought about my mom. The thoughts come unbidden, and I can’t stop them. I don’t want to think about her in that Hospice bed. I don’t want to think about her funeral. I don’t want to think about our shopping outings. The time she told me she would’ve offered to be a surrogate for me if she hadn’t already had a hysterectomy. Her love for my kids. Thanksgiving. Christmas. Halloween. Her fudge. Her giggle. Her weakness and confusion. Her words to us near the end: “I love you all. No matter what happens, I love you all immensely.” I don’t want to think about any of it, because it hurts so much. My nerves tell me to let go: shut down, stop thinking. But still they come, the thoughts and memories. And the gravity of reality is so much more painful than the reality of gravity.
Today, I took Little J to his first speech therapy appointment. He took right to his therapist and enjoyed playing with her. We both kept giggling at his antics. He is just such a sweet kid. When they evaluated him last week, his receptive language was great, but his expressive speech came in at 5 months. He just doesn’t babble or try to copy many words or try new sounds. They said this is not uncommon in babies who are born to addicts. So we will work on it.
Our route home from therapy took us past the new Planned Parenthood – it’s right across the street. As I drove past (the first time), I noticed a lone woman standing on the sidewalk. It looked like maybe she had a pamphlet in her hand. I wondered if she was considering an abortion. I circled the block. The second time I passed her, I noticed she was also holding a Bible. I realized she was praying over PP. The third time around, I had to make a decision. It would be sooooooo out of my character and comfort zone to park my car, haul my toddler over to a complete stranger, and ask her if I could pray with her – Hail Marys and in Spanish, even.
But that is exactly what I did.
You see, this is what I had read in my devotional for today: “HOW DID JESUS KNOW what priorities to tackle, what needs to respond to on a given day, as He saw before Him a whole world that needed to be redeemed? How did He know when to teach the crowds and when to leave them behind so He could spend time with His disciples? How did He know what one person He should pull aside and minister to? How did He know how to handle each individual situation—whether to touch the blind man’s eyes or simply speak healing over him, or to make mud and rub it on his eyelids? How did He know He was supposed to rebuke one group for their unbelief yet encourage another man who admitted to struggling with doubts? How, in fact, when Peter reported to Him that “everyone is looking for you” (Mark 1:37), did He know it was time to “go on to the next towns,” especially when His disciples might reasonably have been asking, “But why? We could stay booked here for at least another month! There are so many people who need You. Why move on?” I think verse 35 gives us the key: “Very early in the morning, while it was still dark, Jesus got up, left the house and went off to a solitary place, where he prayed.” Jesus knew what was on His Father’s to-do list for His day, because He had been quiet enough, long enough, to listen to His Father’s heart. Some of us have no clue what God wants us to do with the rest of our week, much less the rest of our lives. We can’t figure out how to solve the conflict in our homes, how to meet the needs of those closest to us, or how to make even the simplest of decisions. Could the reason be that we haven’t sat still long enough (as Jesus did) to ask God for direction? Might our answer be waiting there? What distractions have been crowding out your time with the Lord? Purpose to make that time the number one priority of your day, as Jesus did, and trust Him to direct and order your steps.” (The Quiet Place by Nancy Leigh DeMoss)
I stood there with her, alternately praying silently for the hurting hearts going into and out of that place, and asking God how I can help change the futures of them and their children – and listening to my new friend haltingly translate to English the five Glorious Mysteries for me. All with a wiggly miracle in my arms.
Some might say I wasted those 30 minutes. They might say it’s none of my business. All I know is, I asked the Lord this morning to order my steps, and I was in that place at that time. It took me three trips around the block and courage that could have only come from the Lord, but there I stood.
And when I left, four or five others had arrived to join the first woman in praying. I thought then of 2 Chronicles 7:14 – Then if my people who are called by my name will humble themselves and pray and seek my face and turn from their wicked ways, I will hear from heaven and will forgive their sins and restore their land. May we always receive the courage to humble ourselves and seek His face and turn from our wicked ways.
I have always thought of us as the city mouse and the country mouse. She loved to hunt and fish and take care of critters. I love to read and shop and … well, anything that doesn’t require being outside with critters. And that was just the beginning of our differences. She was a lefty; I am a righty. She was dainty and girly; I have always considered myself thick and a Plain Jane. She was artistic; I can’t draw a straight line with a ruler. She was outgoing and adventurous; I. am. not. She wasn’t especially organized; I have always been a neatnik.
But this week, as I was looking through some pics of my sis, I noticed one in particular. I’ve seen it bunches of times, but this time, I noticed that her left eye is open wider than her right eye. I noticed, because I’ve noticed that same thing in pics of myself lately. It’s kind of a pet peeve … I try to make sure I’m opening both eyes the same now when pics are being taken (I know … vanity, vanity). Somehow, knowing that eye thing was in our Green genes was comforting to me. I started thinking about some of the other things that we had in common: we had the exact same giggle. Every time I giggle, I think of her. We both had freckles. We both loved music and singing. We both loved our Mama’s fudge. We were both raised in a Christian home by wonderful parents.
She would have turned 49 tomorrow.
“Goodbye,” said the country mouse. “You do, indeed, live in a plentiful city, but I am going home where I can enjoy my dinner in peace.”
How thankful I am that she now lives in the place where there is no fear, no pain, no sorrow or tears, no illness, no loneliness … no death. And even more thankful am I that I will see her again.
She’d just better keep the critters on her side of heaven. 😉
I’ve been learning about the white cane this weekend, since Ben came home with one. I thought I’d take a moment to share what I’ve discovered, since, like me, y’all may not have given it much thought.
Ben’s school offers a class called “Orientation and Mobility.” The kids say it is the funnest class they have. 🙂 The teachers make it entertaining, there’s no homework, and they’ll eventually get to practice navigating place such as stores, airports, etc. This week, all the kids in his class got their white canes.
Hear those tires squeal as I screech to a halt? Yeah, I didn’t think he needed a cane, either. I mean, maybe in a few years, since his vision is still deteriorating. In the last year, it went from 20/200 to 20/300. But he seems to get around pretty well right now. So, researcher that I am, I started reading up on white canes.
First, I came across the various state laws concerning the white cane. I read that, in our state, cars are required to yield to pedestrians carrying the white cane, and that it’s illegal for anyone to wield a white cane unless they are blind or vision impaired. And I read that only about 15-18% of blind people are totally blind. The rest have some remaining vision, like Ben. So the chances are, when we encounter folks with white canes, they can see a bit.
But having been out and about with Ben, I know that he can’t see if the crosswalk shows when it’s safe to cross. A cane will help identify him to drivers, so that if he does inadvertently cross against a light, they (hopefully) won’t honk and shout at him, because the cane identifies him as impaired. By the same token, if he asks someone for directions when he isn’t carrying his cane, they might just say, “Go to the corner and turn right,” which wouldn’t help him a bit, since he wouldn’t be able to see what corner they meant. A cane will explain his circumstance for him, so that (hopefully) folks will give more detailed instructions, or even escort him to where he’s going. It will explain to folks why he bumps into them, or why he takes so long to count out his money at the store checkout. It will tip people off that they should give him a little more space, or that he didn’t mean to cut in line, or that he can’t see them when they’re waving at him.
He also uses the cane in the manner I had always assumed was its sole purpose: he taps it in an arc in front of himself to check for obstacles and uneven surfaces. This is especially helpful in the dark, when his vision is even more diminished, and on stairs and in unfamiliar places.
He’s discovering other uses for the cane, as well … like squashing bugs, tapping out tunes, and poking his baby brother. 🙂 My heart stuttered a little when I heard him say, “I love my cane!” Because at first, I hated his cane. And I expected him to hate it, too. He’s always tried to downplay his disability, and I didn’t really want to dwell on it, either. But whether it’s serving as communication or navigation, his cane is going to be a great tool for him. I’m grateful once again for FSDB … a place where, in a lot of ways, he’s like everyone else for the first time in his life. Boarding that bus today with a bunch of other cane-carrying teenagers made it seem so very normal.
So feel free to talk to Ben about his cane. He’ll be upgrading to a collapsible one soon, and will get to pick out his own carrying case for it. He’s looking forward to that. And if you see someone out and about with a white cane, stop for a minute and admire their courage. And then maybe ask if you can help them find something. Because they are someone else’s Ben, and their mama would appreciate you looking out for them.
Some of you may remember when I took Ben and Emma on a field trip to Wycliffe Bible Translators a few years ago. Carolyn, our guide through the discovery center at that time, has become a sweet friend of ours. My kids loved her from the get-go … she’s fun and funny. 🙂 As I’ve grown to know her, I’ve been drawn in by her honesty and pure heart. She’s the real deal.
Carolyn served with Wycliffe for several years in East Africa, teaching the children of missionaries. She now works in the U.S. at Wycliffe’s Mobilization Center as a Youth Missions Educator. She serves families by giving orientation to new MKs (missionary kids) when their families join Wycliffe in the task of Bible Translation. She also helps MKs with transition issues when families return to the U.S. from their field assignments.
Carolyn is a supported staff member with Wycliffe, and will be traveling this week to share information about her work with folks who would be interested in financially supporting her work with missionary kids and their families. If you, or someone you know, or a church you know, would be interested in joining her support team – or just praying for her and sending her an encouraging note – please go to this link.
I honestly don’t think I’ve ever been witness to something as God-ordained as this little one’s life. We have sat back and watched, over the past almost 13 months, as facet after facet of his journey unfolded. I can’t possibly begin to recount them all. I am just so grateful to have been part of his story.
DEBBIE:
In 2012, Jared asked me if we were done adopting. I said of course we were, then joked, “Why? Do you know of an extra baby somewhere?” Turns out, he did. It was one of those moments in life that becomes a kind of freeze-frame. Whenever I think back to that day, I can still see myself sitting on the couch as Jared poked his head into the room and asked me that question. He said that a co-worker’s mother was raising her grandson, Isaiah, who was about 10 months old. She was realizing that he needed a family, and was considering placing him for adoption. A difficult decision, for sure. Jared’s co-worker told her mom that she would ask him if he knew of anyone who was interested in adopting. Her words were something like, “Jared and Debbie are good people. I’m sure they know other good people who might be interested.” I don’t know about that “good people” label, but we did find out that a family we knew had been praying about adopting. That’s a story for Isaiah’s family to tell, but it made us start to think that maybe we did have room in our family for one more. We prayed that if God had a child in mind for us, that He’d make it clear to us.
JARED:
A friend from work had a son late in life. He was in his mid 40’s. I went to the hospital to congratulate him. I actually got to hold his new baby boy. I don’t want to say that the experience got my juices flowing. I’m not a woman you know. But, it was really sweet to see my friend and his wife and their precious little bundle. I also admit to liking the smell of newborn baby on me as I left the hospital. Several months later, I saw the baby again. My friend looked exhausted. Yep. I could have called that one. I’m tired just getting up in the morning. I’m tired right now. I’m pretty much tired all the time. I couldn’t imagine going through that again. So I asked him, expecting a certain response; “So, what’s it like being a dad at your age?” I was surprised at this response. He said, “It is better than the first time.” “What? Are you serious? You’re just saying that because your wife is standing there.” “No, really”, he said. “I’m much more patient with him.” He said a lot of other things like not rushing him to the doctor every time he coughs and having fun. But I just kept hearing, “I’m much more patient with him.” That struck a cord with me. Seeing my friend standing there exhausted but happy, a thought crossed my mind that took me completely by surprise; I wouldn’t mind doing that. Did I just think that? I’ve said my family is complete and we are done many, many, many times. Now I’m thinking about having another kid?
I pushed the thought to the back of my mind as long as I could. I didn’t want to tell Debbie. I just knew she would immediately insist that we go adopt another child right then and there. I didn’t want to get her hopes up. I didn’t want to start something I couldn’t stop. But, Debbie and I have that rare type of relationship in which we really do tell each other everything. I remember the day I told her what I was thinking. Another surprise. She was pretty quick to say, no. She had the same exhausted look on her face that my friend did. And our kids were older. We decided to put it in God’s hands, and trust that if He had another child in mind for us, that He would make it clear. And did He ever make it clear!
DEBBIE:
In the summer of 2012, we learned that Isaiah’s biological mother was pregnant again. Because she was in jail at the time, I began to pray that God would protect the baby. I specifically prayed that she would not abort the child. I don’t know if that was ever even on her radar, but I prayed anyway. That was another freeze-frame moment. I remember exactly where I was standing in church that Sunday morning when I felt the overwhelming urge to pray for protection for that child, and that his mother would not abort him or her. Months went by, and we didn’t hear anything. Sometime in January of 2013, I started thinking about and praying for the baby again. I thought, if it was a boy and if we got him, we should name him Jeremiah, mostly because his biological brother’s name is Isaiah and it seemed logical. But I also believed that he would live out my life verse, Jeremiah 29:11 … I knew that God had plans for him, plans to give him a hope and a future. A few days later, I asked Jared whatever happened with that baby … had it been born yet? He told me he’d find out. He said that he’d been thinking: if it was a boy, and if we got him, that we should name him Jeremiah. I asked him if I’d told him that was what I’d been thinking, too, and he said that I hadn’t. We’d independently come up with the same name … we were certainly on the same page.
JARED:
My toe was broken. It was silly. I kicked a table leg while walking in the dark in a hotel room. I sat at the clinic waiting for my turn to see the doctor. A little boy and his mother caught my attention. I engaged him in conversation even though he was barely old enough to talk. I couldn’t understand most of what he said. But he was enthusiastic. I did keep hearing the name, “Miah” with a raised voice at the end, like he was asking me a question. His mother, surprisingly Ok with the fact that a stranger was talking to her little boy, explained that he was trying to tell me about his older brother, Jeremiah. Days and weeks later, that little voice saying, “Miah?” kept running through my head for some reason. It was like getting a song stuck in your head. “Miah?” Just last week, we realized that Isaiah has learned to say Jeremiah’s name … only he pronounces it “Miah.”
DEBBIE:
On February 15, I was sitting in my car at the Sanford airport waiting for my friend Lisa, when our friend Thomas called and said that the baby had been born early that morning; that it was a boy; and that the state had removed him from his mother because both she and he had tested positive for cocaine. His grandmother had decided not to be involved this time, so after some time in NICU to detox, he would be going to a foster home in another county. We continued to pray for him, and a few days later, I went shopping for him. It had been years since I’d been in the baby aisle, and I teared up a bit as I planned my purchases. My heart broke for this little one who was all alone in NICU, coming off drugs that were not his choice, facing a very uncertain future. He had nothing – no arms to hold him, no “coming-home” outfit … he didn’t even have a name. He was just Baby Boy. How destitute, to not even own a name! So first, I picked out the softest blanket I could find. If he didn’t have arms wrapped around him, at least maybe someone would wrap this blanket around him. Then I picked out an outfit for him to wear home from the hospital. Finally, I found a sweet stuffed lamb, because I wanted him to have something unnecessary … something extra, to spoil him a little. I found a gift bag and a card, and in the card, I wrote this verse:
For you created my inmost being;
you knit me together in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well. My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth. Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be. — Psalm 139:14-16
I didn’t know how, but I was hoping I’d find a way to get the gift bag to the foster family. I wanted this little baby to be able to look back and know that someone loved him from the very beginning. His future looked so rocky … I wanted him to remember that he was not an accident. Then we heard that his grandmother was going to visit him in the hospital, so we left his gift on her porch.
When he was five days old, the baby was set to be discharged from the hospital and sent to the foster home. His sweet grandmother, at the last minute, went to the hospital to bring him home. That afternoon, she called us and asked us if we wanted to come to her house and meet him. She wanted us to adopt him.
On the way to her house, we told Ben and Emma that we would like to name him Jeremiah. I went on to tell them that my life verse has been Jeremiah 29:11, and we talked about how appropriate that is for this baby, because the Lord does have plans for him … plans to prosper him and not to harm him. We found grandma’s house and parked on the street. I got out of the car and looked up at the house and realized that her house number was 2911. As in, Jeremiah 29:11. Huh! It was looking more and more like “Jeremiah” was the perfect name for him. It was at that first meeting that I saw that he had received the gift bag. He still sleeps with that blanket every night, and my heart trips a little whenever I see him dragging it around the house when he’s tired.
JEREMIAH (BY WAY OF HIS GRANDMA):
I came home from the hospital to my Granny’s house on 2-20-13 at around 3:30. When I got home, I had a gift for me on the porch. It was a blanket, outfit, and stuffed animal. It came from my new family that I haven’t met yet, but I’m going to meet them real soon. This man and woman and two kids came to see me later that day, and I knew that they loved me because they hugged me and loved me and they all gave me my name: Jeremiah. They took pictures of me and they told me they loved me.
DEBBIE:
Over the past year, there have been lots of ups and downs. That’s true of any adoption, I think. Unlike our first two adoptions, though, I didn’t really stress about them. It seemed so obvious that this was God’s doing … I trusted Him to work out the details. Adopting through the state is quite different from the private adoptions we’ve been through, though. We attended all the state-required foster/adoption classes. We’ve had monthly home visits from a social worker. We’ve completed our adoption home study. We’ve worked with a guardian ad litem. We’ve been to a full-disclosure staffing and a couple of court hearings. All this time, though, we’ve been able to spend lots of time with Jeremiah. Even before we were awarded custody by the court, grandma made sure we got to see him regularly. I’ve been able to pray over him, and hold him, and give him as much love as I could each time I saw him. I felt as if that was my mission: to love him as much as I could for as long as I might have. Isn’t that true for any parent, though? We aren’t guaranteed 18+ years with our kids. We have today, right now.
I was 41 when he was born, and I admit I was a little concerned about becoming a mom again at my “advanced age.” But honestly, I think I’m enjoying it more this time around. Maybe I’m just too old and tired to get stressed out about the little things. 🙂 From the beginning, I’ve felt as though I had a connection with this little man. Maybe it’s because I’ve been praying for him for so long. I just feel as though I can read his mind sometimes.
And he is such a delight. You may have seen the pictures. He is almost always smiling, and when he smiles, his whole face lights up. He adores Ben and Emma, and they have fallen in love with him, as well. I honestly don’t know if I’ve ever seen Ben play with someone before … really get down on the floor and play … but he does that with Jeremiah. At nine months, Jeremiah took his first steps, and he’s walking all over the place now. He loves to play with cars and balls, and is a real people person. He is a happy, healthy little guy. It would appear that the Lord heard my prayers and protected that little boy while he was still in his mother’s womb.
We recently learned that it was a judge who gave him a name to be used on his legal paperwork, since he entered the system as Baby Boy. At his adoption hearing today, we gave him his new name: Jeremiah Houston Daniel. We took Houston from Jared’s grandfather’s name, but there’s kind of a dual significance … those who grew up in Glasgow in the 1980’s may remember the WOVO DJ named Jay Houston. Jared was Jay Houston. He also took his radio name from his grandfather. From time to time, we find ourselves calling Jeremiah “Jay Houston,” and it inevitably brings a smile to my face. (And once in a while, when we discover a blowout, we might say “Jay Houston, we have a problem.”)
From the moment I started praying for him, while he was still cooking in the womb, I have fervently believed that the verses from Psalm 139 applied to this child. But I had no idea that “all the days ordained for him” were also ordained for our family. Our family of five, now. But our family has grown even beyond that, as Jeremiah’s grandmother is now “Granny” to all three of our kids. And Isaiah’s family has become like family to us, as we all make sure the boys spend birthdays and holidays and just fun days together. Only a God like ours could have orchestrated something like this. And I haven’t even mentioned the three who have come to know and trust The Lord because of what He has been doing in our little man’s short life!
One parting thought: James 1:27 says, “Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.” There are orphans just like Jeremiah who need a home and a family, all over the world … almost certainly in your town and mine. Most Christians agree that abortion is wrong, but at what point does it stop being a talking point? We demand that children have a right to life. At what point do we look at our own lives and our families and choose to do something that may not fit into our plans? When do we really become part of the solution? When will we begin to give “religion” a good name, by being the hands and feet of Jesus instead of just his mouth? We didn’t see this coming, this third child. We thought we were cruising into retirement in about eight years, as we watched Ben and Emma head toward middle school and high school. We were settled. But oh! What a joy Jeremiah is! I promise you, we have been much more blessed by him than he has been by us. I often just sit back and marvel at his life, and all that has happened to show that God truly does have a plan for him. He is most definitely here for a reason. Will he grow up to change the world? I don’t know. Maybe, maybe not. But I tell you this: he has certainly changed mine.
Not long ago, I came across this blog: http://momsprobablywrite.wordpress.com/2014/01/23/baby-ive-got-your-number/. The author says, “I understand that not everyone can (or even should) adopt. But we can all do something. God tells us in His Word that pure religion is to care for orphans and widows. If you aren’t called to adopt, please know, that as a believer, you are commissioned to DO SOMETHING.” Please, take a minute and read through the 15 ideas she offers, and consider what you can do for the Jeremiahs around you. It will change your world.
Recently, I’ve been praying for wisdom for what to do for Ben’s high school education. He’s in eighth grade now, and I just wasn’t sure what to do for him next year to try to get him ready for adult life. I could continue homeschooling, maybe with a virtual school. There are a couple of co-ops around here I could consider. Then, out of the blue, I remembered hearing about a school for the deaf and blind.
Many years ago, while on a trolley tour of St. Augustine, our tour guide drove us past the school. He said that his daughter attended the school, and that they had moved to Florida for the sole purpose of sending her to that school. The campus was beautiful, and I tucked the information away as curious … probably because I have always been a fan of Little House on the Prairie, and it made me think of the school that Mary went away to attend. I didn’t give it more thought than that, because I hadn’t had any exposure to blindness and deafness. After all, this was years before Ben had any trouble with his vision.
That information came back to me a couple of weeks ago, and I looked up the school online. It looks great, but most things do online. So we made an appointment for a tour, which we took last week. We. were. blown. away.
The school was established in 1885, and claims Ray Charles as probably its most famous alumnus. The K-12 school offers dormitory living to students who are from outside the area, and when the students are seniors in high school, they have independent living apartments, where they work on life skills as well as their studies. Once the students return to their dorms after classes, they must finish their homework and do chores before they can play. There’s actually a curriculum that is followed in the dorms, and there are house parents and tutors who help the kids. Throughout the night, the children are checked every 15 minutes. They have a bowling alley, indoor swimming pool, rock-climbing wall, basketball, football, drama club, culinary class, band, dance troupe … tons of activities! And every weekend and holiday, they have charter buses that take the kids home … wherever they live in Florida.
We visited some classes in the blind middle school and the blind high school. The technology they have available is state-of-the-art. The classes we saw ranged from two students to six. The math class we visited had six kids and four teachers/teacher assistants. How’s that for a student/teacher ratio?? Students have a variety of vision issues, from vision impaired to completely blind, so the kids were working with everything from an abacus to special paper for working problems. The high school math class had monitors at each student seat that displayed everything that the teacher wrote on the smart board … fantastic! We spoke with the technology coordinator, who is a former student of the school. The equipment he showed us is just amazing.
At every stop on our tour, Jared and I just stared at each other in awe. This is exactly what we want for Ben. They have the expertise and experience to work with his vision problem. They work with area businesses to teach job skills to the students. They have top-of-the-line technology. They offer all the activities kids enjoy, but in accessible ways for these kids. And they have 600 kids who are facing the same type of challenges that Ben is facing.
And it’s free. All of it. The school, the boarding, three meals a day, the bus rides home are free. This is a public school.
When I first thought about sending Ben here, I didn’t know if I could send him away. After touring the school, I am desperate for him to go. Oh, I’d miss him like crazy, and I’d worry about him being away. But, as Jared told him when he asked if it would be hard for us to send him away, sometimes parents do something that’s hard for them because it’s the best thing for their kid.
So we’re going to apply and see if he is accepted. We are facing some challenges with that. First, he has other diagnoses besides the blindness. We don’t know if those would preclude him from attending. Second, we don’t have many of the school records that are required with the application: FCAT scores, IEP, etc., since we’ve homeschooled him for the past nine years. So here’s where we are: if this is God’s plan for him, we trust the Lord to smooth the way. If it isn’t His plan for him, I’ll be back to praying for wisdom. Would you pray with us?
And back to that Little House on the Prairie bit … it felt surreal to stand in the hallway and watch lines of kids with canes making their way from class to class. When we went into one classroom, the kids gathered around us, eager to ask us questions and share their experiences. Never, ever would I have thought I would be standing in a classroom, surrounded by blind kids. Part of me couldn’t wait to apply for Ben to become one of these kids, and another part of me felt like a fake … I guess I still haven’t adjusted to the truth of Ben’s condition.
Oh, and that trolley tour guide from years ago who moved to Florida so his daughter could attend the school? He was our tour guide at the school this week. He’s worked at the school for more than 20 years, since his daughter started attending the school. He’s worked as a trolley tour guide in his off-time. What are the chances? 🙂
“Daddy says you push me hard because my brain doesn’t work right.”
I thought a moment and replied, “Your brain doesn’t work right, so yes, I push you. I want to see how much you can do. I want you to know that it’s not an excuse for you to use … it’s a reason to work harder.”
“That’s mean. Someday you’ll understand how it is … how hard things are for me.”
My heart hurt as I thought about that, and thought that I may never realize how much my boy struggles. He keeps on keeping on, and doesn’t often complain. I wish I could see through his eyes and think with his mind and understand what daily life is like for him. Maybe then I wouldn’t push him on some things. But I don’t know what he is and isn’t capable of, so I do push him. When I see that something truly isn’t possible for him, I stop pushing and I do it for him. I’m not mean or cruel. I just want him to succeed and achieve as much as he can. “Maybe someday you’ll understand that I push you because I love you,” I told him.
So much of every single day is spent pushing him – can he read that page with his diminished vision, or should I read it for him? Can he eat his rice with a spoon with his motor skill problems, or should I let him use his fingers? Can he control that temper tantrum, or should I just let him get it out of his system? To date, we’ve dealt with diagnoses of Tourette Syndrome, seizure disorder, Asperger Syndrome, Stargardt’s Disease, encephalopathy of unknown etiology. Year after year, issue after issue, doctor after doctor, we have tried to find the cause of his illness. We saw all the local doctors here, and then we traveled to Miami, New York and the NIH in Bethesda. Once we found that the steroid treatments were such a huge help in preventing his physical and mental regressions, we decided that a diagnosis wasn’t our goal after all. Alleviating the symptoms became our goal. And for the past couple of years, with continued steroid pulses, that’s worked well.
The problem with not having a diagnosis is that we never know what to expect next. Three years ago, he lost much of his vision rather suddenly. We couldn’t have anticipated that. When that happened, I began a new way of thinking in regards to his condition: What’s next? I wondered if he would lose his hearing next. What else would this insidious, unnamed illness take from him? For a few years, things have remained status quo. Until now.
I noticed a year or so ago that Ben’s toes were … tight, for lack of a better word. When I trimmed his toenails, he would cry out when I had to pull his toes straight. He complains that they cramp from time to time. I kept thinking I should get him to a podiatrist, but kept putting it off. I thought I was just being hypervigilant. But a couple of weeks ago, I noticed that the end one of his toes has turned at a weird angle. It kind of looks like it’s been broken, but it hasn’t. I took him to the podiatrist last week. He agreed that his toes are curling in odd ways. He also said that he’s developing bunions and that one of his arches has fallen. And he noted (can’t believe I haven’t noticed this before) that when he walks, his right foot turns WAY out and kind of drags and flops when he walks.
The doctor said he doesn’t know what is causing the problems. He said there is some muscle imbalance. He said that it could be neurological. Or not. Regardless of the cause, he said Ben needs some orthotics and a splint and a lot of physical therapy. We started the therapy at home yesterday, and again I find myself pushing him to do something that is very difficult for him. I’ve scheduled an appointment in February with the Shriners Hospital in Tampa to have his feet and gait evaluated and his braces/splints/orthotics made.
Since we don’t know what’s causing this, we don’t know how bad it might get. Maybe the folks at Shriners will be able to shed some light on things. At the very least, we’ll have their report to send to the NIH as one more clue in their quest to diagnose him.
Ben is taking this in stride (ha ha. I’m punny.) His mobility isn’t really affected right now. In typical Ben fashion, he keeps on keeping on. He sees these disabilities as mere nuisances. I should probably take notes from him on that!
Me? I was thinking this morning of Mrs. Norman’s psychology class in high school. She was a wonderful teacher, and I remember clearly how she explained Elisabeth Kubler-Ross’s stages of grief. I think I’m in the DA of DABDA. Denial: I’ve been thinking that maybe there isn’t really anything wrong, that maybe he’s just been wearing shoes that were too tight. Maybe I’ll be embarrassed that I even posted this, once we see the folks at Shriners, because maybe there’s nothing wrong after all. That would be the best embarrassment ever! But then I realize that tight shoes wouldn’t account for his turned-out, shuffling right foot. And I remember that the boy is barefoot at least 90% of every day. (Homeschool, remember? Shoes are not required.) Not much chance for shoes to squish your toes if you aren’t wearing shoes. Anger: I’m angry at the doctors, even though I know it’s not their intention to leave my son to suffer. If we knew what was causing all this, maybe we would know how to stop it, or at least slow its progression. We might know what to expect. But they just charge us our co-pay, tell us there’s nothing to do, and send us on our way without giving us another thought. That may be unfair, but that’s what the anger sounds like. Just keeping it real.
I keep going back to a conversation I had a few years ago. I said to my friend, “I’d love to have just one day with Ben when everything worked right.” I love him so very much, just as he is, but I hate to see him struggle through his days. My friend replied with a truth I’d forgotten: “One day, everything will work perfectly. It just might not be in this lifetime.” And so, as we press on – and as I push him on – I fix my eyes on that day, because this world is not our home. I agree with Paul:
I’m not saying that I have this all together, that I have it made. But I am well on my way, reaching out for Christ, who has so wondrously reached out for me. Friends, don’t get me wrong: By no means do I count myself an expert in all of this, but I’ve got my eye on the goal, where God is beckoning us onward—to Jesus. I’m off and running, and I’m not turning back. So let’s keep focused on that goal, those of us who want everything God has for us. If any of you have something else in mind, something less than total commitment, God will clear your blurred vision—you’ll see it yet! Now that we’re on the right track, let’s stay on it. Stick with me, friends. Keep track of those you see running this same course, headed for this same goal. There are many out there taking other paths, choosing other goals, and trying to get you to go along with them. I’ve warned you of them many times; sadly, I’m having to do it again. All they want is easy street. They hate Christ’s Cross. But easy street is a dead-end street. Those who live there make their bellies their gods; belches are their praise; all they can think of is their appetites. But there’s far more to life for us. We’re citizens of high heaven! We’re waiting the arrival of the Savior, the Master, Jesus Christ, who will transform our earthy bodies into glorious bodies like his own. He’ll make us beautiful and whole with the same powerful skill by which he is putting everything as it should be, under and around him. – Philippians 3:12-21 MSG
The time she told me she would’ve offered to be a surrogate for me if she hadn’t already had a hysterectomy. Her love for my kids. Thanksgiving. Christmas. Halloween. Her fudge. Her giggle. Her weakness and confusion. Her words to us near the end: “I love you all. No matter what happens, I love you all immensely.” I don’t want to think about any of it, because it hurts so much. My nerves tell me to let go: shut down, stop thinking. But still they come, the thoughts and memories. And the gravity of reality is so much more painful than the reality of gravity.
an abortion. I circled the block. The second time I passed her, I noticed she was also holding a Bible. I realized she was praying over PP. The third time around, I had to make a decision. It would be sooooooo out of my character and comfort zone to park my car, haul my toddler over to a complete stranger, and ask her if I could pray with her – Hail Marys and in Spanish, even.
The view from my tent 