I Planned My Trip To Holland

For those of you who have never read the story, “Welcome to Holland,” it is a beautiful metaphor of the journey that parents go on when they find out that their child has special needs (I encourage you to check it out here: http://dsnetworkaz.org/holland/). It talks about how even though you were planning a trip to Italy but ended up in Holland instead, Holland is beautiful in its own way and it ends up being okay even though it wasn’t what you were expecting.

We chose Holland. We adopted our son who has Down syndrome. We fully expected his therapy sessions, his slower milestone gains, his amazing feats of double-jointedness and his beautiful little almond-shaped eyes. But somehow Holland ended up simply being stop number one on our journey around the world. We never expected his cancer, his kidney failure, his seizure disorder, his catheters, his feeding tubes and all of the other issues that he has that have nothing to do with his Down syndrome.

We chose Holland. I was angry. Why couldn’t we just settle there? “God, you asked us to go to Holland and we obeyed. Why are you doing this to us?” Instead of Holland, we spent hours, days, weeks at the hospital. They were our slums of Calcutta, our journey of sickness and pain. I just wanted Holland back.

But then something else happened. We moved on. We began to climb. When my son said, “mama” for the first time after we were told he would never talk, we breathed in the clean air of the Swiss Alps. We made it to the top of the mountain and we were stronger for it. We saw beautiful scenery again and hope for our future travels.

We started in Holland, but then we headed in many directions, meeting other amazing travelers on the way. Parents who were also going on this world tour who had been to more destinations than us gave us courage, advice and a helping hand. We saw the beauty in their travel-worn faces. We felt their strength as they pulled us through the deep valleys. Our difficult journey around the world began to actually feel like an adventure.

We found rest in our friends, family and church. They were our soft and warm beds after weeks of backpacking through the muck and sleeping on the ground. Our doctors, nurses and therapists were our tour guides, taking us through difficult journeys so that we could reach beautiful destinations. And slowly, Holland didn’t seem so important anymore.

We chose Holland, but we didn’t stay. I’m so glad that we left. Being in one place forever gets boring after a while anyway, right? Becoming world travelers has made us stronger. We have pushed ourselves to the limit to find out that we are brave, we are smart, we are capable parents who have a difficult journey ahead. But we aren’t traveling alone.

So we’ve thrown away our map. Goodbye Holland! It no longer matters where we go. There is no final destination because this journey is one that takes a lifetime. It only matters that we are traveling together.

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Special Needs as a Model for the Christian Church Collective

I am blessed to have friends from all walks of life. You are straight, gay, male, female, old, young, of many religions, atheists and from every political perspective that I can think of. I feel like this offers me an interesting perspective when major US and world events occur. I don’t intend to take sides on any of the political topics that I mention. This post has nothing to do with that. Instead, it has everything to do with the Christian response to politics as a whole and what our role is in this world as followers of Jesus.

I know that this viewpoint will cause a lot of disagreement, but I propose that all of the arguing between Christians when it comes to right vs. left, gay vs. straight, welfare, gun control, etc… is all a huge bunch of crap. It seems that Christians grab on to these concepts and base their faith around them rather than Biblical teaching.

“Well, if you’re a Christian, then surely you vote for __________.”

“If you are a Christian, you must be against _______ group of people.”

“Come on Christians, let’s make our mission to go and protest ________.”

Come on! I get so angry with how much effort Christians put in to telling people that they are wrong. When did Christianity change from loving like Christ to getting to choose who is worthy of the Gospel? Why do we always feel the need to be right all the time? To tell others what they are doing wrong? To fight about every little thing that we disagree with?

I know that some of you will say, “But you can’t really think that these issues aren’t important?” They are important in terms of human rights, equality and how we help those in need in our country. However, they are NOT important in terms of how we view people or how we love them. And I truly don’t think that they are important to God in terms of who gets into heaven and who doesn’t. I often feel that it must hurt Him so much to see people condemning one another in the name of Christ for things that just don’t matter in the grand scheme of our lives.

What does this have to do with Special Needs? I’m glad you asked! I am so blessed to be the director of a program for families with special needs. I often get comments from people telling me what a nice thing I am doing for those people, or how my job is so nice and there needs to be more people like me. But, what no one understands is that I am one of the privileged few who gets to see a glimpse of the way that the Church Collective should work.

Before anyone gets any ideas that this is going to be a fuzzy, feel-good special needs story, let me give you some perspective on some of our major moral, ethical and philosophical issues in America. And let me let you in on a little secret. NO political perspective is in favor of people with special needs. There is no right or left. Only, special needs families vs. the system as a whole. For example…

-We debate gay marriage while people with special needs aren’t able to marry ANYONE, EVER, because there are not enough programs in place to help them live successfully as independent adults.

-We have lengthy debates over who wore what to which award show when some people with special needs wish that they could dress and bathe themselves.

-A pregnant mom finds out that her baby has Down syndrome. She loves this child already. One side tells her that her only option is to abort because the baby isn’t their view of perfect and therefore is of less value than other children and not worthy of life. The other side tells her that she will go to hell if she aborts so she must keep the baby, but she better not ask for help when the baby is born. Funding is being cut for that. If she does ask for help, they will make her take drug tests and treat her like a second-class citizen for not being able to do it on her own before they will help the baby that they told her to keep. They are pro-birth, not pro-life.

-We debate about racism and kill one another over the color of our skin while some people with special needs wish that they could see what their friends and family look like.

-We debate about whether or not everyone in the Good Ol’ US of A has an equal shot. Guess what? They don’t. Hard work and persistence don’t pay off if you aren’t able to advocate for yourself.

-We argue about healthcare and call for reform while people with cognitive impairments are being denied organ transplants because of their IQ score, not because of their insurance plan. They die while we argue.

All of this being said, look at the first century Church in the accounts in the Bible. It was not made up of scholars and politicians. It was made up of people in desperate poverty, people living in fear, people being persecuted unto death. Also, it was made up of Jews and Romans, two groups so unbelievably opposite in values, political affiliation and in every aspect of their daily life routines that they should have been at odds, even killing one another, but they didn’t.

Now look at individuals with special needs. Last week, we had a new adult with special needs join our weekday program. He had never met anyone else in the room. He walked in and I introduced him to the group. This group of people is made up of adults who all have some form of cognitive impairment. Some are unable to speak, some have trouble moving, some don’t hear well, all are unable to hold down jobs or live alone. Most don’t have a lot of social opportunities outside of our group. Ten minutes after the new person’s arrival, he walked over to me, gave me a hug and said, “I love it here! You guys are my family!” The next day, his mom called me to thank me and said that after 50 years of her son’s life, he found a place to belong.

No one in the group asked him what his political affiliation was. They didn’t ask if he liked women or men. They didn’t ask him what kind of clothes he wore. They didn’t ask why he looked a little different. They simply saw someone who wanted to be a part of their group, so obviously he should be. Then, they spent 10 minutes asking him about himself and really listening to what he said. They loved him from the moment he walked in the door simply because he was a person and people deserve love.

What do these two groups have in common? Neither the first century church or our individuals with cognitive impairments have the time for or the luxury of debating unimportant issues. When people need one another for survival, whether it be physical or emotional survival, there isn’t time to argue and disagree about things. Paul even warned the first century churches not to fight amongst themselves and let little things get in the way of the gospel. When you are persecuted by the world around you, you band together. Race, gender, financial standing don’t matter when you need one another so desperately.

So what do both of these models say about the way church should be done? First of all, they tell me that if there is any type of person who walks into my church that I don’t think should be there, I am doing Christianity WRONG. Second, they show that nothing about us other than the fact that we are made in the image of God has any bearing on our value and our need to be loved. The Bible calls us to love like Christ and also tells us that Christ loved us so much that He gave His life for us. Unless we are okay with ignoring one part of this or the other, there is no way that we can promote hate toward anyone and still be followers of Jesus.

I hope that no one hears me saying, “Love the sinner, hate the sin.” To me, that phrase has become a way for Christians to ridicule people who they disagree with but still feel good about themselves. If we can tell ourselves that we love people but just hate what they do, we aren’t getting away from all of the judgmental attitudes that non-Christians attribute to us. We need to change the ending and simply say, “Love the sinner, because we are all sinners who need Jesus.”

I know that some people will take this to mean that I think we should just be tolerant of everything and that there is no real sin or that everyone should just do what feels right to them. I absolutely believe that there is real sin in the world. I have my own strong opinions of what is right and what is wrong. But here’s the thing, it is not up to me to decide who is worthy to receive the gospel and who isn’t. It isn’t up to me to tell people that they are intrinsically bad. It is up to me to be the hands and feet of Jesus in a hurting world. The worst sin that I could think of would be to use my words or to live my life in such a way that if someone found out that I was a Christian, they wouldn’t want to be one.

The sad truth that seems to be very prevalent in churches today is that if you agree with everything that they stand for, you’re good to go. You get to go to heaven. And since you have it all together, you can condemn those who disagree with you. Once people agree with you and fit in, they can come to your church as well. But there are multiple problems with this.

First, it means that we are putting petty differences on a pedestal. We are taking the small things and making them big. For goodness sake, we can’t even get away from speaking badly about other Christians who are from different denominations, let alone talking about non-Christians.

Second, condemning others for their faults means that we are assuming that we have it “right.” We know exactly what the Bible means, how to interpret it correctly and are able to follow it word for word. As I said before, I have my own definite definitions of what I believe is right and wrong. But I also know that I am probably wrong about some of it simply because I am human. I also don’t think that being wrong while being genuine in my faith will keep me out of heaven. Assuming that any one group of us is totally correct is astoundingly arrogant.

Finally, if we are going to church to be comfortable, we are not living like Jesus. Working with families with special needs has taught me that my walk with Christ will be painful. Not only that, but it should be painful. Somehow we have bought into the lie that once we choose to follow Jesus, He will make our lives easy. Oh my friends, I will tell anyone and everyone who will listen to me that Jesus is my savior and that He died for me. He is the reason for my life. He is the only one that makes this world make any sense at all and I love Him with my whole heart. But He has made my life so much more complicated and difficult.

Why are we so scared as Christians to let pain, adversity and sin into our little church bubbles? That’s what the church is there for. Why can’t we see that we are as weak as we perceive our friends with special needs or as the persecuted first century church? Because we are born sinners, we must realize how desperately we need one another no matter our race, gender, orientation, political affiliation or anything else.

Church is the place for broken people to love one another to Christ. Church is the place to belong when we are hurting so badly that we can’t bear to walk alone anymore. Church is the place for us to love one another unconditionally when we agree on NOTHING but our need for a savior. Church is the gospel with flesh and blood.

This Side of Heaven: Special Needs and the Church

Life with special needs is unfair.

For so long now (and I’m talking centuries), people with special needs have been marginalized, left out, mistreated, abused and neglected more than any other population of people. On top of unfair stereotypes, they face a sometimes mountainous set of physical or cognitive challenges, or a combination of the two.  So the questions for believers have to follow… “Why does God allow disability to happen in the first place?” “Why would He allow people to suffer so much?” “Why give someone an unfair amount of challenges?” “Why put families through it all?”

These were questions that I never really considered other than to tell myself that the simple answer is, “Because this world is imperfect and when we get to heaven, it will all be better.” But, there is a new, continuous, unrelenting thought going through my brain now that we have our own child with special needs. I look at him every day, this amazing miracle that God has placed in my life, someone that I know I don’t deserve but have been blessed to be given, and I think over and over, “What is going to happen to this beautiful person when I am gone?”

When Will was born, things were very touch and go. No one seemed to want to say it out loud, but Will’s survival was in question. For weeks and then months, my only prayer was, “Oh God, just let him live.” I still have that prayer going through my mind every time we see his specialists. But now, the fear that I could outlive my child is juxtaposed with the fear that my child may outlive me. What a strange set of worries. All I want is for him to be okay, but then if he is, what lies ahead for us all, especially for him when I can no longer take care of him?

As I’ve been pondering all of this in my heart lately, in addition to working with many amazing adults with special needs who have parents asking the hard questions, I wonder if we as a society have the whole thing backward. Instead of asking God why He would allow special needs to “happen” to people, maybe we should be recognizing that people with special needs are made in the image of God just as we are, and asking what our response should be as Christians?

I’ve often thought of the story of Adam and Eve in the garden since I started working with individuals with various types of special needs. Not the story of their creation, but the one about their first sins. When they ate of the fruit of the knowledge of good and evil, did it change their intellect in such a way that they were smarter but also sinful? What if the individuals that we marginalize are glimpses of the people we were meant to be before the fall? Our ever-increasing intelligence as a human race succeeds to further our ability to outdo, to look better than, to be richer than, to be stronger than and ultimately, to kill more efficiently than those around us. What if God’s original intent was that we didn’t have so much knowledge but had a heart more like His?

When I go to work and have the opportunity to interact with my friends with special needs, I don’t see in them the need to compete, to be better than, or to outdo one another. I see people who love one another simply for who they are. And I am so humbled that they love me with all of the flaws that I carry.

But what does all of this mean for the church? It means that not only are we to look at people with special needs as equals, but we need to understand that there is a lot to be learned from them about faith in God and about how we are to love one another. Jesus says that we have to become like little children to understand and gain the kingdom of heaven. Some of my friends can do this much better than I can. Above all else, we have to stop looking at special needs as something to be pitied and start looking at how we can incorporate anyone with differences into our community. My son was made in the image of God, extra chromosome and all! What a beautiful thought. And I see Jesus’ love in him every day. We have to get over the fear of interacting with people who are different than us and realize that they are just as beautiful, gifted and loving as we are if we look at them through God’s eyes.

So in response to the above questions, as believers we should consider that God knows what he is doing. Instead of asking, “Why would God give someone special needs?” we should as, “Why hasn’t the church been reaching out to people with special needs when God created them in His image?” Instead of, “Why would God allow people to suffer so much?” We should be asking, “Why has humanity decided that a group of people should suffer just because they are different?” Rather than wondering why families have to go through all of the “What if’s?” we should be asking, “Why isn’t the church bearing the burdens of parents who love their kids with special needs more than anything and are scared for their future?”

My oldest son, Matthew (who is only 6), and I were having a conversation this evening over dinner about visiting his Great Grandma and Grandpa this weekend. He mentioned that Great Grandma can’t remember things anymore and I told him that when we are little, we are taken care of by our parents and then when we are old, we are taken care of by our children and that is what our family is doing with Great Grandma. My dear little Matthew, who happens to have the most beautiful and loving heart for Jesus said, “William may not be able to live by himself. Down syndrome makes it hard for you to learn sometimes. But he will come and live with me. I’m the biggest and I love him.” Now, I know that he is only 6 and doesn’t fully comprehend what he is saying, but I have to say that that little boy changed my life this evening.

What if we all looked at special needs in terms that simply? What if the church said, “You only have one child and no other children to take care of him/her when you are gone. Since the church truly is a family, you don’t need to worry. We will be that family and love him/her as passionately as if he/she was one of our own.” Lives would be changed my friends.

Life with special needs is unfair. William’s kidney disease is unfair. William’s blood disorder is unfair. His increased risk of cancer is unfair. The fact that if he lives long enough, he has a 100% chance of developing Alzheimer’s is unfair. Society’s view of him is most certainly unfair. But, we serve a God who knew what He was doing when He made my little William. Instead of looking forward to the day when Will gets to heaven and all of his “problems” are taken care of, I look forward to getting to heaven and seeing that his heart, even with its holes, was made perfectly ahead of the rest of us, and the new bodies that we are all given in heaven look more like his does here on earth.

The In-Betweens

I am restless. I have been restless since I can remember. Since before the age of 10, I have constantly needed to be working on the next big project, planning the next big event, getting married, having the next baby, finding the next job. I am not anxious, I am not nervous, I just don’t feel completely satisfied. I avoid the space in-between large life events by pushing myself to complete things, planning the next event when the current one isn’t even over yet and packing my schedule with things to do so that I don’t have any slow, in-between space.

Then, four months ago we found out that our baby was on his way. His birth family had chosen us and my brain kicked into high gear. The next thing! We were moving forward and life was exciting yet again! But suddenly William arrived early and he was sick. Sick almost to the point of death. And instead of the in-between being something for me to push through and avoid, it was my only option.

We spent weeks in the NICU living from one blood test to the next. The doctors told us that the only way to gauge William’s progress was through his bloodwork each day. So blood would be drawn by 7am and we would wait. There were 23 and a half hours of in-between time almost every day. Some moments were filled with breathing problems, treatments, surgeries and other ups and downs. But most of the time we just sat and prayed. I was living in the dreaded in-between that I had avoided for so many years. Nothing was happening and I could accomplish nothing other than to pray.

When William came home, I was obviously relieved. But I was also so excited to be back to the fast pace that I love to live my life in. I started to make plans again. Time to fill up the calendar and do the next thing! But somehow the in-between had continued instead. Rather than the next big “thing,” we go to the next big doctor’s appointment or await results from the next big medical test. The in-between time became filled with anxiety and no plans were made for our lives until we received positive test results.

Now, God has been so amazing in our lives and has truly saved our son. As more and more reports come back all clear, the appointments become fewer and farther between. I have felt a gradual security growing inside me and no longer dread medical reports but welcome them. God has proven himself over and over and I can stand firm with Him knowing that he really takes care of William.

But a new and unexpected thing has happened as well. I feel restless again, but not for the same reason. In some ways the in-between is getting harder, not easier.

I went to my first parent support group for families with special needs this week. As I sat and listened to the other parents talk, some of what they said was right where I was in terms of trying to figure out insurance, medical schedules, etc… But these parents also needed a place to vent, to cry and to mourn the loss of the dream of having a typically-developing child. This is vital, but for Scott and I, we chose to adopt our son knowing that he has Down syndrome. I felt like I was prying into the lives of people who I didn’t have the right to be joining in this intimate moment.

Then, I went to church and sat in the middle of a conversation with friends who all have completely healthy children. One of them made a very innocent comment about knowing how I feel and I kept thinking, “You have no idea how I feel. Your child didn’t almost die. You don’t spend half of your life headed to specialists and appointments and worrying.” This wasn’t fair to them. It’s good that they have no idea how I feel and they are trying to be supportive. But at that moment, it hit me. Not only am I going to have to accept this new in-between space that is constantly forced upon me, but I have become the In-Between.

I don’t quite fit in with other families with special needs, but I no longer identify completely with my friends who have typically developing children. Even talking about adoption is hard for us. Other people adopting infants have typically gone through the pain of infertility and we have not, so I feel guilty sharing our story. Or, they are dealing with the foster care system and spend a lot of time talking about court, behaviors to deal with, visits with biological parents and more. It is all way over my head. People assume that we are either saints or crazy for choosing to adopt a baby with special needs and I find myself feeling more and more like my new life post-adoption has become one big grey area. I have somehow gotten stuck as an In-Between, someone who doesn’t fit 100% anywhere.

Even before William arrived, I had really been praying about my feelings of restlessness. I felt guilty about my lack of satisfaction with life. I thought of all of the sermons that I have heard over the years about God being our source of contentment and I worried that maybe I was dropping the ball when it came to my relationship with Him. But now I feel spiritually solid, more than ever now that I have seen God’s hand in my life and the lives of my family in the last few months in such a powerful way. So what’s the deal? Why haven’t things fallen into place? Why have I become my own grey area?

I was goofing off the other day in a rare moment of alone time reading some material from C.S. Lewis, one of my all-time favorite authors. I came across a quote that stopped me dead in my tracks…

“If I find in myself desires which nothing in this world can satisfy, the only logical explanation is that I was made for another world.”                                                                                         – C.S. Lewis

…and I thought, “That’s it.”

I don’t have to feel guilty for my restlessness, but I have to realize that I am unrealistically looking for complete peace and contentment in a broken, sinful world. As Christ followers we are all the In-Betweens, heaven-bound souls living in-between our birth in Christ and our true lives in Heaven. If I look at it this way, in-between doesn’t make me less restless, but the restlessness reminds me that I will achieve Heaven and perfect peace some day. I am not alone in the way that I feel. There are many of us searching, even thought the individual details of our lives may be different. And though this ultimate peace that I find myself searching for may elude me for the rest of my life here on earth, when it is achieved, it will last forever. Praise the Lord! Amen!