God is still God.

On April 1, I wrote the following. I have since asked God to not send me on any more spiritiual journeys for awhile! I am no longer certain that He sent me on this particular journey last fall to learn how to respond to Will. I think His plan was so much bigger as just a few weeks after writing this, I learned the baby I carry is very sick, has some physical differences, and may not survive. Yet, I keep coming back to what I studied and what I know to be true. He is the Creator. He is knitting this child together in my womb even now. His love for this child is immeasurable - as is His love for each of His children. Though my heart aches and yearns to hold and know and raise this child, I am not promised that. It does not change that He remains God. Sometimes, lately, when I cry out to him on behalf of my daughter, I am frustrated by the fact that all I keep hearing is "I am God." As a human mommy, I want reassurance and promises and answers. He keeps reminding me that He is God. That's all I get for now. I'm publishing this again because I need to reread it and I believe it is true for each of my children. I know it's long - I basically spent 5 months researching it!

I also note below that I did not include diseases in my study - just syndromes and disabilities as they relate to Will. I am forced now to consider diseases as it is quite possible that my Ellie Grace has some obscure disease. Regardless, He is God.

God is God. If He is God, He is worthy of my worship and service. I will find rest nowhere but in His will, and that will is infinitely, immeasurably, unspeakably beyond my largest notions of what He is up to.

- Elisabeth Elliot

Last November, I heard something in a sermon which sparked something in my mind and challenged me to research and study several issues as they relate to Will. So began perhaps the most intense spiritual journey I have been on - at least since 5th grade when I really studied the permanence of salvation. In fact, there have been days in the last 5 months when I have literally had a headache by the end of the day because I have thought, and searched, and thought some more, and have worn my brain out. My husband has commented that he has enjoyed coming home some nights to a spiritual discussion as opposed to a discussion on discipline or potty training!
I have searched my Bible and I have read several other authors I respect regarding my search - C.S. Lewis, Phillip Yancey, & Elisabeth Elliot. I have met with my husband (who attended a baptist seminary and has a degree in religion), my minister (we attend a Bible church), my parents' minister (of the Methodist church), my mom (who was a teaching leader for years with BSF and has taught & written some Bible studies & has spoken at women's retreats), and my mentor/discipler (who knows scripture and can pull it out instantly and knows how to make me think outside the box.) I say all this to demonstrate that in my search, I wanted to be teachable. I wanted to be vulnerable and to have discernment and wisdom. I did not want to depend on what I thought I knew or what I was comfortable with. I was willing to be made uncomfortable because I did not want to be found guilty of using scripture to fit "my" theology. I wanted my theology to be based in scripture. I wanted to seek the wisdom of others- especially those who know their Bible and who are more detached from Will than I am. I have also found it to be quite amazing when people who live in different towns that I met with had very similar things to say and even used the same scriptures to make a point.

My search began with an effort to determine whether God allows syndromes and disabilities or whether he wants them to occur in certain people. (Initially, I also lumped diseases in this group but I have since realized that I do not believe that diseases can be included in the same group as syndromes and disabilities. They are separated in scripture and for the purposes of my search, not really applicable. Just fyi.) Because I knew that Will would begin asking questions this year about his body, I felt a strong sense of urgency as I researched this. My answer to these questions I had would be imperative as I seek to correctly answer Will and teach him about who he is created to be. Essentially, I was attempting to discern the origin of syndromes/disabilities, the definition of "good," and where God fits into the world of limb differences...and in so doing, figure out the best way to explain things to Will and to others who ask me questions.

When Will was first diagnosed in the womb, I was given the book, A Grace Disguised, by Jerry Sittser. The most powerful concept I learned in that book is the idea of "why not me?" Whenever I begin to throw a pity party for myself, this phrase often pops into my head. When I change my perspective from "why me?" to "why not me?" I am able to focus better on my blessings and I am humbled. Asking "why me?" is a sign of my pride. One of the big lessons I have had to learn in this process is to put aside my pride and be willing to trust God regardless of the answer (& whether or not He even reveals one.) Do I trust His method of loving Will?
My conflict began when I was forced to reconsider what is "bad" and "good" and where having a child with a disability/syndrome fits into that paradigm. Throughout my life, I have been guilty of defining experiences based on my own definitions and perhaps defining God based on my epxeriences. My husband taught me the term agropromorphism - it means to try to put our human definitions on a God who is beyond human understanding and defining. Perhaps I am incapable of completely grasping God's definitions of what is "good" and "bad." ( I do not refer to the absolutes - ie: murder is bad - nor to moral issues here. Again - I'm sticking to disabilities!) To apply this to my life, I had to question what is good or bad when a child is born with a syndrome or a disability. Perhaps at one point I might have said it was "bad." But, now I have a child with a disability. If I somehow had the power to change him and give him four full limbs, I would not do it. His body is not "bad." His syndrome is not "bad." I have been so blessed to meet so many other children with various limb differences. There is nothing "bad" about them - they are typical kids who play and laugh and bless their families and friends immeasurably. Have they known pain? Absolutely - often far more than other children their age. Have their parents shed tears for them? Of course. But, I have found that in many cases, we have learned how to laugh at life; we are more sympathetic and sensitive to others, we don't feel sorry for ourselves (though I sometimes have my moments) and we know incredible joy and blessing. A child who is born different is not less than or "bad." (Again - not talking about moral issues or even the sin nature- I have a two year old - I fully understand he has a sin nature! - I am referring to the physical body.) A child who is born with less limbs or less IQ points is not less loved by God. I do not believe that God loves Will less than any other child. Nor did he save Will's mind or save his elbows as an expression of his love. I do not believe He expresses His love for his creation through our physical bodies. I have lost a baby and I have had friends who have lost babies. I have a friend who lost a baby at birth and know another couple whose 2 year old suddenly died. Does God somehow love other children more because they live longer? Absolutely not. God's love is not contigent on the human body nor is it expressed in the human body as compared to another. His love is not demonstrated in the number of fingers and toes someone has or the number of days someone lives on this earth. Isaiah is a good example of a place in scripture in which "bad" things happened and were prophesied about in order that Jesus might die to save creation. We are all loved by our Creator. And I firmly believe He is the sovereign Creator - nothing happens without his approval and knowledge. (See the book of Job.) He "fearfully and wonderfully" knit Will together in my womb. (Psalm 139) I do not believe that when Will or any other child with a disability or syndrome was in the womb that somehow God closed His eyes for a moment or looked away. This is where the case for whether or not God allows or wants someone to be born with a syndrome or disability gets gritty. What I am learning is that perhaps, in ways my finite, potty training, pregnant Mommy brain can't fully grasp, perhaps it is both. Perhaps God both allows in His soverignity something that society deems "bad" to occur in the womb so that He can bring good from it - because He wants a certain result. Perhaps God's definitions of "good" and "bad" are far beyond what my brain can grasp.

My main purpose in studying this issue has been to best determine how to teach Will about his body and how to specifically address his differences - both with him, most importantly, and with others who ask me questions. Before my pregnancy with Will, this was not an issue for me. Of course, I had also never heard of children with limb differences. Regardless, it never occurred to me to puposely not teach my children that God made them. There are numerous children's books available that teach this very principle. I've seen the phrase "God Made Me" painted on walls in church childrens' wings. So, when Will was diagnosed in my womb with a syndrome affecting his limbs, it never occurred to me to teach him otherwise. Why wouldn't I teach all of my children that God made them? Psalm 139 clearly states that He did. Why would I suddenly teach Will differently than I might teach my other children? He is created in God's image (Gen 1:27.) He is "Fearfully and wonderfully made." (Ps. 139) Since having Will in my life, I've seen a whole new creative side of the God we serve. In discussing this with R recently, he noted that it kind of seems boring now to have ten fingers and 2 hands and ten toes and two feet and no mouth issues. That's so "ordinary." Instead, he pointed out, we have the distinct privlege of watching something extradorinary - daily. When Will picked up pennies today to put in his piggy bank and then put them in that tiny slot - all by himself and without a single full length or fully functioning finger- that's amazing! ( I also thought it would take awhile & I could finish cooking dinner- I was wrong - the kid is fast!) When at dinner tonight, he made a silly face at me and managed to get his tongue all the way to his lip line - Praise the Lord! I was in tears! When he jumps or grabs a toy or smiles or laughs or runs... without feet... WOW It is an extradorinary miracle! It's fun for us as his parents to watch Will get creative and resourceful and figure out how to do life without hands or feet. Is it "normal?" Nope. But I wasn't promised "normal." And this is actually more fun and certainly more exciting & unexpected! I don't get to define what is "good" & thank God for that. If I did, I would be missing out on abundant blessings. I would be missing out on the creativity of God at work. I would miss out on the joy of watching strangers in airports or other locations stare in amazement and shock as Will climbs on a chair or feeds himself or runs or cheerfully greets every single passenger with a high-five. My life is full. My heart is full. God knew what He was doing. "Everything God created is good and nothing to be rejected if received with thanksgiving." (1 Tim 4:4) Having a child who is created differently is good. I love an article by Elisabeth Elliot in which she quotes a woman born without legs, Judy Squier, who writes, " 'I am convinced without a doubt that a loving Heavenly Father oversees the creative miracles in the inner sanctum of each mother's womb (Psalm 139) and that in His sovereignty there are no accidents....What the catepillar calls the end of the world, the Creator calls a butterfly. ... What we judged to be "tragic" -... I expect we'll one day see as the awesome reason for the beauty and uniqueness of our life and our family."

So that brings me to "why?" What is the purpose of having a syndrome or disability? Why would God either allow or want limb differences or a lower IQ or the inability to effectively use one's body for any child? I was recently reminded by someone of the parable of the rich ruler found in Luke 18. Jesus says that it is "easier for a camel to go through the eye of a needle than for a rich man to enter the kingdom of God." A rich man has to make more of an effort than a poor man to depend on God to have their needs met. When this was brought to my attention, it was pointed out to me that sometimes people with syndromes or disabilites might have an easier time being dependent on God to meet their needs than those who rely on their own strengths. Will will have the choice someday to choose to depend on God for creativity and resourcefullness and wisdom and humor in how he handles difficult situations and confidence in who he is created to be and for his significance, and so much more. Perhaps children with disabilities and syndromes might even be able to better retain some childlike qualities such as sensitivity and compassion as an adult and therefore be like the children Jesus instructed His followers to emulate- because the Kingdom of God belongs to such as these (Luke 18:16). In some ways, I believe that his dependence on God, his Creator, gives him a step up to understanding the Kingdom. I also love love love John 9 in which Jesus heals a blind man. When His disciples question Him as to who sinned to cause the man's blindness, Jesus responds, "Neither this man nor his parents sinned, but this happened that the work of God might be displayed in his life." That has brought me so much reassurance over the last several years. Have I sinned? Absolutely - we have all sinned and fallen short of the glory of God. Hence, we need a Savior. But did any particular sin of my past cause our current circumstances? No - Jesus said the man was born blind because God wanted the result - to bring glory to His name and demonstrate His power and love. In fact, I would venture to say that in having Will for our son, I have grown so greatly in the fruits of the Spirit - if anything, that is what is being manifested in our family. Sit through hours of therapy or hours in an airport with a toddler or deal with endless questions from strangers and you quickly learn what kindness and gentleness and longsuffering and patience really entail! Last Sunday, Will's sunday school lesson just happened to be on this story from John 9! How fun it was to see God at work as I have been studying this & keep coming back to that verse! When I met Nick Vujicic last December who has no limbs at all, he mentioned begging God at an early age for the miracle of limbs. As of now, at age 27, God has said no to that prayer. I just received today a newsletter from Nick in which he describes a recent mission trip to Egypt. Nick has seen 400,000 people come to know the Lord. He is confident that had God granted him limbs as he asked at age 10, he would not have had the honor of spreading the gospel the way he has around the globe. He gives God complete glory for his lack of limbs- God is using what society might deem "bad" and has turned it to "good" and for His glory. We often talk in humble awe about what we have been allowed to glimpse in just two an half years of Will's life- total strangers have written us about how they have somehow been changed or inspired by Will's story. It's so fun and humbling to watch God's work displayed in Will's brief life thus far.

I believe that God both allows our painful experiences and He wants them for the results they will produce. He allows them actively - He is not passive as this gives Satan too much power. God's hands are not tied (pardon my pun.) He allows suffering and yet wants it in a way my human brain can't fully get. He wants our hearts. He wants the results and fruit that is born out of challenges. I have learned in the last few years that suffering and painful experiences build strength, integrity, compassion, sensitivity, sympathy, humor, and training. (2 Cor 1) Do I want Will to hurt? My gut reaction is to say no - I hate it when he cries and hurts. But, I do want him to learn from the pain. Sometimes I wish there was another way to build character in him but this is the opportunity we've been given to work with. Do I want him to be a man of integrity and compassion and sensitivity who can laugh at life? Absolutely. I can not prevent him from pain - whether or not he had limbs this would be the case. Pain and suffering and challenges are simply part of life. Besides building these traits, I believe that ultimately God is pointing us back to Himself and that He can use a disability or syndrome to do this. Again, quoting Elizabeth Elliot who quotes Joni Eareckson Tada, an artist and author who is a quadapalegic bound to a wheelchair after a diving accident, says, " ' People with disabilities are God's best visual aids to demonstrate who He really is. His power shows up best in weakness. And who by the world's standards is weaker than the mentally or physically disabled? As the world watches, these people persevere. They live, love, trust, and obey Him. Eventually the world is forced to say, "How great their God must be to inspire this kind of loyalty.' " I pray that Will's faith & worship of & service to his Creator someday will point others towards God as they watch how a child born differently, can choose a life of joy over a life of resentment or bitterness. I love a quote by Corrie ten Boom, a Christian survivor of the Holocaust, who says, "...the Lord said to me, 'This is the story I gave you. You tell that one.'" (Quoted by Elizabeth Elliot in Epilogue II of Gates of Splendor.) God has given us a story. It is our choice as to whether or not we will share it & give Him the glory. Will's story thus far is the story I have to work with.

So, how should I teach Will? Every family with a child diagnosed with a syndrome or disability will have to answer this question for themselves at some point. We may differ on how we address this with our own children and with others who ask us questions. Our own family's circumstances and our environment certainly play a role. As Will has continued to bring up questions recently about his hands, this issue has become more urgent to me. I believe God sent me on this journey beginning last fall so that I would be more fully equipped to accurately answer Will as he is now seeking truth regarding his differences. I am sure he will question his feet at some point soon. I do want to be careful not to spiritually manipulate my children. If I leave God out of the equation by focusing only on what a geneticist, for instance, has told me (which amounts to basically nothing), I am only avoiding the issue of where God fits into this. If I come at it accusingly, I am manipulating him. Will Will have anger at God? Probably. It would be normal for him to experience anger. I recently read an article about a mom with a little girl who is about 4 years old and has a hand difference. The mom realized that she needed to allow her daughter to grieve the loss of her hand. It's a normal part of grieving and accepting a loss or difference to also experience anger. One of the reasons we named Will after David (his middle name) is not only because David authored many psalms but because David, a man after God's own heart, is so brutally honest and vulnerable. David gets angry at God. (Psalm 13 among others.) Yet, he stays in relationship with God - even when he is angry and doesn't understand God's purposes. My goal is not to avoid anger with Will at God. I assume he will have anger. I pray that we will have established a relationship with Will and a foundation in our home that encourages him on how to do this appropriately. However, this does not change that Will was created with intent and purpose and love by God. God doesn't turn a blind eye and He doesn't make mistakes. Nor does it change that God is mysterious and beyond our full comprehension. God is God and His ways are not mine. His character is love and justice and mercy and jealousy and mysterious. Will God grieve when Will experiences cruelty and prejudice? Yes, I believe so because that means another of His creations - one of His children- is not responding in the way He designed. But does He greive because He regrets designing Will without hands or feet? Absolutely not. Does He somehow want less than the best for Will because Will has challenges? Nope. Recently at the park, a little girl asked me about Will's hands. I told her that yes, they were different, but that is how God made them. Bless her, she reached out and grabbed his hand and said, "I like your hands." My heart melted. I so wished I would have had a camera (although it might have freaked out her mom) as there was something beautiful about the stark contrast of her black skin and his white skin as they held hands. I could have hugged her for embracing him in that way. I wondered later if God in heaven wasn't shouting, "Yes - that's it! A child from a race which has suffered great prejudice embraced a child with a difference who has also suffered prejudice - precious!" I hope He was brought joy by both of His creations and how they chose to accept each other. I don't believe God sees pain in an of itself as evil - it is not of satan because He knows where He is taking us through that pain and to give satan credit for it would extend too much power to him. So, we will continue to teach Will that he was created by God. We will acknowledge with him that, yes, his hands and feet are different than ours. We will continue to brainstorm together all the many things he can do all by himself with his body. And I will continue to say that his hands and feet are wonderful - because they were designed by God and because scripture tells me He doesn't make a mistake and His creations are "fearfully and wonderfully made."
I can't fathom God's perspective or timeline. I can't fully grasp how God can allow something to happen because He wants a certain result or because that is how it best fits into His plan. I can't comprehend His purposes - they extend both far before and far beyond me. I am thankful to serve a God who is so big and Whose plan is so great that I can't get it. It would disturb me if my tiny brain could get it! He has no boundaries. I have read portions of Job recently and learned it is believed to be the oldest book of the Bible. Isn't it interesting that perhaps the first book recorded is about suffering and pain? I can't help but wonder if this wasn't the case because God knew that suffering and pain would be a part of the human experience. God never tells Job why He allows the pain. He also always stays involved in the process - He does not leave Job alone nor does He give satan free reign. I love Job 42:3 and have it posted in my kitchen to serve as reminder on tough ("pit") days that I can't grasp the incredible and amazing experiences God has in store for Will - "Surely I spoke of things I did not understand, things too wonderful for me to know." (To really get this - read chapters 40-41 too - God reveals to Job just how vast and beyond human understanding He is - helps put things in perspective!) I love Jeremiah 33:3 also. "Call to Me and I will show you great and unsearchable things you do not know." I don't know how God intends to use or bring glory to His name through a child's disability or syndrome. Nor am I promised that I will ever know. It may remain a mystery for my entire life. That doesn't change who He is - He remains the sovereign Lord. God allows painful experiences and challenges because He wants and desires a particular result for us. He wants us and our hearts. He does not take pleasure in our pain but He does take pleasure in the way we respond - if we choose to hide in Him and seek Him and give Him glory. God can grab ahold of what satan intends for our destruction and use it for our best. Because He is God and I am not, He can somehow integrate the "allow" and the "want" in a way I can't get. " God is the God of human history, and He is at work continuously, mysteriously, accomplishing His eternal purposes in us, through us, and in spite of us." (Elisabeth Elliot) I can't grasp His plan or His perspective. I can't seem to simplify it into a basic answer. I don't know God's purposes or the whys. I don't get to determine what is "fair" or even what is "best" (thank goodness He doesn't give me what I may think is best!) But this is the opportunity I have - parenting a child diagnosed with limb differences. Our life experiences are not in spite of His love -they are because of it. He is God and I am not.

Will was made by God - just as he is. He was made on purpose and with great purpose. He is not a mistake. His body is not an expression of God's love- he is loved because God loves all He creates. He is "fearfully and wonderfully made" and this is what we will continue teaching him. We will answer his medical questions as they arise and as we feel is appropriate (with our limited knowledge.) We will teach him that he is loved immensely and unconditionally. Ultimately, as I teach Will and I as seek to answer the questions of other children and adults who so often ask, I will attempt to shift the focus from the creation to the Creator. God allowed Will to be born with limb differences because He has a plan and a purpose and wants a certain result from Will's life - a result that is best reached perhaps by having a syndrome affecting his limbs. Why was Will born like this? I believe for now that it is so that the work of God might be displayed in his life. I just keep going back to John 9. God is God and He has a plan. His plan is not thwarted by a disability or a syndrome - He uses those in His plan. I just get to tell the story and be a part of it - for which I am so thankful.