I laid in bed for the better part of two hours tonight unable to sleep before I got up to write this. I don’t think there has been a time in my life when I have felt so alone. As I laid in bed I couldn’t help but think: why doesn’t anyone understand? Or do they, and just not care? Perhaps they don’t know? So here it is, I’m going to let my girl (emotions) out for a post tonight.
Almost 6 years ago, my wife gave birth to a special needs child three months early. At just 25 weeks gestation, our little Isaiah came into this world without a sound or breath. I realized tonight, I have spent so much time “sucking it up” that I don’t think anybody really knows what it is like.
When we first had Isaiah, we dealt with 3 to 4 months of him in ICC and NICU. We wondered for the first month of his life, if the next phone call would be the one that said that Isaiah didn’t make it through the night. When we look back on that time, we think: Wow, did we actually walk through that? But it seems as each day passes, that time in our life was easier than it is today. Don t’ get me wrong, I’m grateful he’s here, and I wouldn’t trade him for anything. I know there are people; I pray for people personally, several families, who were less fortunate than us in this area and were forced to bury children. I know it could be worse.
Back when we walked through this we were surrounded by church members who were eager to help. Through prayer mostly, and some wonderfully timed meals, they catered to a few of our needs. But the most important thing people did was ask, “How is he doing?”
The days turned to weeks, the weeks into months and we brought him home. The alarms would go off at all hours of the night because he’d stop breathing here and there, or his monitors would malfunction. We toted oxygen tanks, and sensors everywhere we took him. We got by on assistance while I went to school, barely making ends meet. We kept looking to the future, seeing the end of school, as a light at the end of the tunnel. When I gave up my career to help with my family we went from making almost six figures to making almost four. We were looking forward to standing on our own feet again!
School ended almost a year ago and I’m still not working. I’ve had to turn down two jobs, and didn’t get one. I’ve started to work on my business simply because it offers flexibility. Isaiah is almost six years old as I write this. It takes two people to give him a bath. He’s still in diapers. He can only feed himself about 30-40 percent of the time. He has texture issues so badly that his primary foods are baby cereal, yogurt, and pudding. Therapy meals mean we feed him things he can’t handle to the point that he gags, in hopes he builds up a tolerance. He doesn’t know how to chew, and he’s not interested in trying. Sometimes when we give him a bath, it takes all we can do to hold back the tears as we get to see his skeletal structure through his skin, and what little meat he has on his bones. He’s bordering, I fear, on the edge of a feeding tube as he’s now roughly in the ten percentile for both weight and height.
He is stronger than my wife can handle, and more stubborn than any child we have had. He knows not one single word, and how to apply it. He responds to what you say, or sign, only about 10-15 percent of the time. When he wants something, he makes a yelling sound that drives us absolutely crazy, and then we intently watch him as he struggles with the half a dozen signs he knows to try to express to us what he wants.
He loves to watch The Wiggles, or Veggie Tails, and that’s about it. You can’t connect with him, or communicate with him on just about any level. Tonight as I tucked him in, and hugged him close telling him I loved him, He smiled, but just stared blankly at the wall and I couldn’t help but pray, “God, how do I reach him? How do I know if he needs something, or wants something? How can I make his life better? How do I teach him to love you?”
I feel like my little boy is stuck in a shell, a shell I don’t know how to break him out of. I don’t have time to cry about it. I have to be strong emotionally for my wife, and family. Constantly reminding her that God is in control, and we’ll walk through what he gives us to walk through. Reminding her, that our financial situation is what it is, because we choose to take care of him, rather than pass him off to an institution. Praying for strength is almost a nightly thing, but I am TIRED!
The church has no longer got our back. A couple years ago they were doing a push for people to read the New Testament. I read the whole book. I realized, that if what I was reading were true, if I was going to believe it, I’d have to admit that a great many people in the church were not saved. Freaked out by the very concept of Hell, I went to leadership, posted on my Facebook, challenged people to examine themselves and started pointing out false teachers with a vengeance. When leadership admitted that they’d be lucky if 30% of the people in the church were actually saved, I realized I wasn’t alone. It consumed me in my prayer life, and took the focus off my son, and myself, and put it where it belonged. On God and the lost.
As I saw horrible materials being used to further feed the “flock” I raised objections to leadership, and it was met with resistance. In the process of posting both positively and negatively in regards to different teachers and sermons, it became quickly apparent that the call in scripture to not separate based on which teachers we follow had likely been either unread, or ignored. One of the leaders in my church laughingly admitted Beth Moore was something of a “sacred cow” around the church.
The end result of my efforts to try to reach out to the diluted body was a complete separation from all of it, by all of it. I apparently was seen as the one causing “division” because I was doing the best I could to stand for truth. Don’t get me wrong, my approach can leave a lot to be desired. I mention all this simply to explain why now it seems harder for us. It’s harder because what we thought was a place of “unconditional love” was actually a place that saw us as a charity case. When we didn’t agree with everything they said, and thought, the response was one of, “Look what we have done for you!”
It’s gotten back to us that our income, and how we spend our money doesn’t meet with the expectations of some within the church. We’ve been told that people have said we should just “leave because nobody want’s us there anyways.” But I think the hardest comments I have had to field didn’t come from just one place, it has come from many. “I don’t know how you do it, I would have had to terminate.” Insinuating that we should have aborted our son, because he’s too much work and too much trouble.
“If there is anything we can do…” Is one of the most common statements. Can you not think of something to do? Or is it you just want to make sure we actually have to ask? We have never been secretive about our situation. Pay the rent for a few months. The electric bill. Buy us dinner out, and keep the kids. But more than all of those things, come and visit, get to know us, and stop judging us, as you so much accuse us of doing.
Many people don’t like us, and they don’t even know us. I go to bed sometimes feeling like I’ve given up everything it means to be a man in this country. I get to choose: full time career and kid in an institution, or stay home and let people talk about our finances, and judge us for those things. Look down on us for what we don’t “deserve.” Be obedient and share the truth, do my best to be loving and obedient in warning others, or have religious friends. These are some fun choices.
So now we’re stuck in a spot where we don’t know who to trust. Who is talking, who isn’t? Our church is all about “reaching the kids” just not my kids. They don’t care so much about them. At least based on the number of phone calls received in the last year and a half. When they did help us, some people chose to use it as leverage in disagreements. It all reminds me of how the pharisees would be sure to do all the “giving of ten percent” but forget to love. They were so careful about the law, but failed to love. Does the church make the same mistake today? I’m sure my perception is highly skewed.
This level of honestly has been difficult for me. Some people will read this, and think I’m feeling sorry for myself. Perhaps I am. But what I am most sorry for, honestly, is that I don’t know how to father Isaiah better. That I have no Christian children to have my ten year old build solid relationships with. That when we are at what is likely one of the hardest places in our life, with no idea which door to open, or road to take, the “family of God” doesn’t care enough to call, or ask how things are, let alone try to come up with ways to “share the burden.” I am angry at myself for thinking that there were people, that actually loved people for who they were and where they were, rather than how they could make them feel.
I felt so blessed tonight to lay on the couch, and watch a movie with my wife. Truly I did. I think it’s incredible how much God provides for my family in terms of sustainability in a situation where I feel like we’re lucky to be able to eat. Money, and material need is not something I’m going to ask for, request, or let people know my family might need when it’s actually needed. Call it pride, but if I don’t have to, I’m not begging for financial help. God is faithful, and he has always come through. But friendship for my wife, and kids… That would have been something. And I’m not talking about charity friendship. I’m talking about the kind of relationships that are strong, and unconditional, and they don’t make excuses, but instead make time for the other party. They sharpen, and rebuke, they admit failures and share in that miserable feeling of failure, as well as those of success. And when at rock bottom, they simply encourage and build up, not using cliche’s or twisted scripture, but facts and reality. Sometimes that’s as simple as, “We got your back” and proving it.
What we really need, is to figure out where we need to go to be surrounded by the body of Christ. I’m so grateful for our Bible study friends, I just wish the church was what scripture said it should be. Specifically as pictured in Romans 12.