Lessons I'm Learning From Parenting a Child on the Autism Spectrum

       It's been a long time since I've written anything new on our blog. It's not that there aren't exciting things going on, there are. Tons, actually. I see God working in so many ways that my mind can't even begin to figure out where He might be going with all of them…I do know this, however; the journey may have its ups and downs, but the destination will be something more amazing than my mind can conceive.

       The lessons I've been learning that I want to share with you today were born the evening of Chloe's 4th birthday. That was exactly one week ago today, but it's taken me awhile to get my thoughts organized. Those of you who know me know my mind doesn't work in a linear fashion - from "a" to "b" to "c" to "d"…; it works more like a cluster diagram with various thought bubbles scattered around the paper and lines going from one thought to other thoughts they trigger almost simultaneously. Together, then, they merge to form a main idea or a conclusion. But instead of working in an "if this, then this" kind of manner, my thoughts are more like a plate of tangled spaghetti; it takes me a little while to unravel each string and put them together in a "logical" manner that someone else can follow. That's how my brain works. Yeah, I know. Crazy. But, that's me. So bear with me and get a cup of coffee. This is a long blog post.

       As many of you know, Chloe was "unofficially" diagnosed with Autism Spectrum Disorder this summer. The doctor who diagnosed her is professionally qualified to do so, but it's "unofficial" because he would actually have to spend several more hours with her for the "official" diagnosis. At the end of the day, it's the same thing. Chloe has Autism Spectrum Disorder and Sensory Integration Disorder - fancy names that mean she's wired uniquely and experiences the world differently than most people. One of the things that comes along with both of these "disorders" is something called "emotional dysregulation."

       Think of it this way. Imagine experiencing all your emotions - love, happiness, compassion, anger, malice, bitterness, a sense of justice or injustice - at an extreme or hyper level. Now imagine having a diminished ability to hide them or "regulate" them. This is Chloe's experience of life (and the norm for many kids on the autism spectrum).

       On top of that, imagine that everything you experience through your senses is extreme: sights, sounds, the feel of water on your skin, the feel of wind, smells, tastes, even your internal sense that tells you how your body is feeling. Imagine if the volume of these things and your sensitivity to them were dialed up to extra high. This is Chloe's form of Sensory Integration Disorder.  How do you think you would cope with that? Well, put these things together in a 4 year old, and you've got one anxious, unstable, and volatile child.

       Unstable and volatile were exactly how I would have described Chloe on her birthday. She was "wired" from the time she woke up, but I could see it escalating even more throughout the day. She was kind of keeping a lid on it until I made the mistake of telling her about her birthday cake - which I had yet to make. Somehow, she couldn't quite grasp the - "I still have to make it" part. All she knew was she wanted her cake and she wanted it right then. I know - sounds like a spoiled little brat, doesn't it. And believe me - that's exactly how she was acting. But with Chloe, things can quickly escalate to a whole different level.

      Still, she really made an effort to be okay with waiting. She came into the kitchen with me to watch me mix the cake ingredients, but it was a little more than her already overloaded nervous system could handle. "Too loud, Mommy! "Too loud!" So, I got her headphones. That helped, and she was fascinated by the way they blocked out the sound; but she couldn't handle the feel of them over her ears. In only seconds, her poor little nervous system just whigged-out. Things went flying across the room, screams rent the air (and my eardrums). I've learned it's best if I stay calm in these situations because if I don't, it just adds to her overload and makes things exponentially worse. Still, she was uncontrollable. As terrible as this sounds, I ended up having to literally - but gently - drag her to her room; it was the only way to keep us both safe. As it was, I ended up with multiple scratches, bite marks, and bruises from being pinched. The whole day went like this, with only brief interludes of peace (in which she was extremely happy). It wasn't exactly the birthday I'd hoped for.

       At one point when I had to drag her to her room yet again, my heart just broke for her. Tears were leaking out of my eyes (I was trying to hide them from Chloe because my emotions on top of her emotions often contribute to her sensory overload). I did, however, find myself praying softly. "Oh, God. Please help me! I don't know what to do. I don't know what she needs! How do I do this?" Chloe's emotions flipped like a light switch. Her babbling (which she does when she's in distress) became words. "Oh, Mama," she said. "I know…I know…," she gently rubbed my arm to comfort me. "It's okay…The Mouse Mobile will save you." This is a quote from her favorite TV show - If you Give a Mouse a Cookie. It's her equivalent of saying, "It'll be okay, Mama."

       It won't surprise you when I tell you I was physically, emotionally, and spiritually exhausted by the time I put her to bed that night. But God wasn't done with me; He had some things He wanted me to think about.

       It started as just one thought. "The way Chloe is acting with you - her emotions out in the open all raw and exposed without the ability to hide them…that's how I see your heart, my dear daughter." Hebrew 4:12 and 13 tell us that all things are open and exposed for God to see - right down to the thoughts and intents of our hearts.

       I began to make connections. How often would I scream at God the way Chloe screams at me if I weren't an adult and able to control myself? How many times have I actually done the whole screaming thing? How often do I grumble? Grumbling is kind of the adult version of screaming - it means the same thing. "God this isn't fair! I don't like this! I don't want this! You're not being nice to me! I don't like you! I want ________________ , and I want it right now - not in 5 years!" Sounds like what Chloe was doing concerning her birthday cake, only more sophisticated. Oh, and here's my favorite Chloe-ism that she likes to throw at me when she's angry: "I don't need you,"  My response is always, "Oh? Good luck with that." Ouch. Can't you just hear God say that?
     
       Here's another connection. Chloe often wants me to "play" with her. What that really means to her is this: Come sit by me while I play. Don't mess with my toys. Don't interfere with what I am doing. Just sit here at my beck and call. Pay attention to me…see me…but let me do my thing uninterrupted - unless I want you to participate, of course, and then I'll tell you exactly what I want you to do. And you better do it exactly like I've said. Another ouch. How often do I implicitly (or explicitly) communicate that attitude to God? "I want you here, but don't mess with what I'm doing with my life. Don't mess with my plans. Don't mess with my desires. Don't mess with my toys…unless I tell you to, and then You better do it exactly like I tell you or I won't be happy with you. After all, this is my little kingdom. I know what's best, and I'm the boss."

       I began to see my daughter as a living visual aid being used by God to show me myself from His parental viewpoint; it wasn't a flattering picture. I thought, "Okay, how does my Heavenly Parent respond to me when I'm like this?"

       A series of biblical truths came to my mind followed by specific Bible verses. The first truth concerned the kindness of our God. Romans 2:4 says, "Or do you despise the riches of His goodness, forbearance, and longsuffering, not knowing that the goodness of God leads you to repentance?" The Greek word used for "goodness" here is chrestos; it always means benevolence and kindness. So, it is the kindness of God that leads us to repentance. Sometimes kindness has to be tough, but the heart of God toward His children is kindness. This is possible because His just wrath over our sin has been absorbed by Jesus! Tough and wrath aren't the same thing - and they shouldn't be the same thing coming from me to my child, either. Kindness sometimes needs to be tough - and sinful behavior (whether or not it is exacerbated by autism spectrum disorder or sensory integration disorder or emotional dysregulation) needs to be disciplined and corrected. But if I am to be the image of Christ (her living visual aid, if you will) to my child, I need to deal with her in kindness. My desire for her good and my kindness toward her will speak volumes to her - as would my wrath, anger, and frustration driven correction. Which "heart-song" do I want her to hear from me?

       The next truth God brought to mind was that we image the love of Jesus to others when we suffer willingly for their sake. In Colossians 1:24, the Apostle Paul told the believers in Colosse: "I now rejoice in my sufferings for you, and fill up in my flesh what is lacking in the afflictions of Christ, for the sake of His body, which is the church." This used to be a tricky verse for me. What could possibly be lacking in the suffering of Christ for us? What a strange thought! Nothing, of course. But Paul seems to say otherwise. What could he mean? Keeping with the context of Colossians chapter one, I believe Paul is referring to the fact that the believers in Colosse were missing one thing in connection with the suffering of Christ - seeing it and experiencing it first-hand. Paul couldn't add to their salvation experience - the sacrifice of Christ was totally sufficient to purchase their redemption - and mine. But Paul could be a living testimony both to the mercy he received from God during his own suffering and to the love of Christ that would be willing to sacrifice on their behalf. Paul was their "visual-aid" so they could see and experience this love first-hand.

       How does that connect with Chloe? First of all, because she learns from the way I go through suffering. Do I trust the grace and mercy of my Heavenly Father during suffering? Does she see me crying out to Him for help? For deliverance? For forbearance? For patience? For more trust? Or does she watch me try to rely on myself... and eventually implode on myself? Do I trust God with her or do I totally freak out as if there were no hope? Which ever one of those I do is the one she will learn from me. Second, but just as important, am I being a visual-aid for her of the love of God that is willing to sacrifice on her behalf? Am I willing to lovingly suffer for her sake despite the way she treats me? Isn't that what Christ did for me? He died for the redemption of the very people who were crucifying Him.

       This may seem strange, and I've read a lot of blogs by autistic adults who say parents should stop talking about the "sacrifices" and "how difficult it is" to raise a child on the spectrum because it hurts their self-esteem. I take issue with that on a number of levels. Every parent sacrifices for their child, and sacrifices deeply. Children are difficult to raise. Deal with it. I was difficult to raise. I'm not perfect, and I sinned against my parents plenty. Children shielded from this reality are at a disadvantage in life. Of course, I'm not talking about showing them a "woe-is-me" attitude, but let's face it - parenting is not easy. Parenting a child on the spectrum is especially not easy. We've made sacrifices. I've had to sacrifice even simple dreams - taking her to the pool and playing with her and her friends there; big and boisterous birthday parties with lots of friends and beautiful gluten and dairy-filled cake and ice cream; the ability to take her into town on errands; vacations and get-aways, and a myriad of other things. These are real sacrifices, and they are hard.

But Jesus sacrificed for me things I can't even begin to conceptualize. My loving sacrifices on Chloe's behalf place the image of Jesus before her. They fill up what is lacking in the afflictions of Christ for her. I am an everyday, living, breathing visual-aid.

        The last two biblical truths that came to my mind were intricately connected with this previous one. I don't even know which came first, they were just kind of - BOOM - there. They were these: I should have joy in the midst of my circumstances with Chloe, but joy doesn't equal lack of hardship or deep sadness. James 1:2-3 says this: "My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience…." God was basically telling me, "Julie, you need to have joy in the midst of this, because I'm actually using this to produce something good in you." Okay, I get that. I accept that. But does joy mean I can't grieve? Does it mean I can't cry? Does it mean I can't hurt? Does it mean my heart can't break? Does it mean I'm not exhausted? Does it mean I don't ask for a break? Does it mean I don't cry out to God for things to be different? Enter the final verse, Hebrews 12:2. "Looking unto Jesus, the author and finisher of our faith who for the JOY that was set before Him endured the cross, despising the shame, and has sat down at the right hand of the throne of God." Here was God's answer to my questions. Jesus had joy. Jesus wept and grieved so deeply that He sweat drops of blood. Jesus cried out for deliverance. Jesus was in such deep agony, He asked God why He had forsaken Him - even though this was their plan from before the beginning of time. Jesus wept over Jerusalem: "Jerusalem, oh Jerusalem! How often I would have gathered you together like a mother hen gathers her chicks under her wing; but you would not!" Jesus grieved when His people would not accept his comfort. The Holy Spirit grieves when we sin. When I was growing up, I thought that meant my sin frustrated Him and made Him angry. No. The Greek word there means to grieve or to distress. My sin distresses the Holy Spirit, much like Chloe's sin distresses and grieves me (and not all her melt-downs are sin; sometimes they're just her body's way of whigging-out under too much stimulus). This is related to the kindness of God and shows His heart for His children.

       This is precious. It means I can have joy - not just in the glorious times with Chloe - and there are glorious times. But also in the distressing times when I'm crying out to God for direction and wisdom and perseverance and inner peace. It means I can have joy when I'm having to work at making a conscious decision to trust Him with me and with Chloe and with her future. It means I don't have to walk around with a fake smile pretending everything is okay when it really isn't...I can be real because joy and grief are not mutually exclusive.  And I want joy; I deeply desire the biblical perspective that breeds joy even in the midst of a horrendous day - the perspective that says though I may grieve, it is not without hope.  

       What does all this means when it is put together in my brain? It means that just as I am a visual-aid for Chloe to see Jesus, Chloe is a visual-aid for me to see myself stripped bear of any adult sophistication I think I have. She is a daily reminder that I desperately need the grace of God - not just on the level of needing His wisdom and strength to be a mom to Chloe, but also on the level of recognizing my sin is as open and laid bare to God as Chloe's is to anyone who sees her throwing a total tantrum. She is a living reminder that just as she doesn't perceive the world accurately and needs me to help her make sense of things and learn to respond appropriately, so I don't perceive this world properly. I need God's perspective to help me make sense of things and His word to teach me to respond appropriately. Chloe needs the perspective I can bring to her. But I need the perspective she brings to me as well.

       But do you know another kind of perspective she gives me? As deeply as she can feel anger and bitterness - she feels love and compassion and joy just as truly and deeply. The joy of her laughter, the purity of her compassion, the unfeigned love she lavishes on me...this is a whole other side to the lessons Chloe has for me.

       I don't know the plans God has for Chloe and for me - but He does. I don't know where this journey of parenting her is leading us - but He does. I don't know the sorrows before us - but He does. And I don't know all the joys set before me, but I know they're beyond amazing because He tells me in Romans 8:18 that the sufferings of this present time are not worthy to be compared to the glory that shall be revealed in us. And if someday Chloe comes to Jesus as her Savior (as I pray she will), then the same will be true for her. That is a great source of comfort and joy.

       Meanwhile...I will experience joy in the blessing of being Chloe's mom and of being given the honor and privilege of imaging Jesus to this precious, precious child who is so dear to my heart. It's all about perspective. Biblical perspective.

And now abide faith, hope, and love; but the greatest of these is love...

January 11, 2018

          I love to read – most anything, really (except Jane Austen – Gasp – get over it, and books about vampires or witches).   No, really, classics aren’t my favorite; or maybe it’s just that I’m really picky.  I like Nathaniel Hawthorne – The Pathfinder, The Last of the Mohicans, and my favorite of his – The Scarlet Letter.  I love Charlotte Bronte’s Jane Eyre and Harper Lee’s To Kill a Mockingbird. Frankenstein by Mary Shelley was excellent, as was Crime and Punishment by Fyodor Dostoyevsky.  And who can top Les Miserables by Victor Hugo??? I also like reading Biblical Counseling and psychology books, practical theology books (War of Words by Paul Tripp is highly recommended) and apologetics (Cold-Case Christianity by J. Warner Wallace).  I like autobiographies, as well.  I recently read Seeking Allah; Finding Jesus by Nabeel Qureshi.  Amazing. 

            But I am by no means a book snob.  My favorite snuggle-on-the-couch-with-hot-chocolate past-time is reading Christian fiction.  It can be romance or murder mystery/suspense, but it’s light and usually trivial (well, murder mysteries aren’t really trivial, but you know what I mean).  I make no apologies J 

            Dee Henderson is one of my favorite authors; she writes mostly murder mystery/suspense and has a series of books called The O’Malley series.  Each of the books in this series follows one member of an unusual family of siblings who each grew up to be some kind of public servant/first responder.  What makes these seven siblings unusual is that they are not related by blood.  They grew up together in a children’s home and decided to be family – to the point that when they grew up, they all officially changed their last names to – you guessed it – O’Malley. 

            One of the things I like best about these books is the way this unique family sticks together through thick or thin.  They each have their own unique set of issues stemming from childhood trauma/neglect/abuse, and they each have their own personality quirks that could drive someone insane – but it doesn’t matter.  They love and accept each other for who they are.  They tolerate each others’ weaknesses, idiosyncrasies, mistakes, miss-steps, and faux pas’ while also celebrating and leaning on each others’ strengths.  There is no rivalry between them; when one suffers, they all suffer, and when one is exalted, they all exalt.  They call each other out if the need arises, but it is done and accepted in love.  Sounds wonderful, doesn’t it? 

            This is my dream.  This is what I aspire to and what I wish/long for from other people in my relationships.  If only it were that easy.

           

            At the start of this new year, I wanted to choose something spiritual to focus on for the year.  The thing God impressed on me was to pray for an increased capacity for faith, hope, and love.  So, as I’ve been reading my Bible every morning, I’ve noticed these three things in my readings more than I have before.  It’s amazing how much of Scripture focuses on loving others.  I mean, we all know it’s there – how can you miss it; but sometimes it becomes so easy to say, “Yes, I love people,” and yet have no idea what that’s supposed to look like or how to implement it when things get tough.

            I’ve been reading through I and II Peter this past week.  Have you ever realized how much in those two books focuses on love for others?  Not just what it is, but also what it needs to look like and from where it has to come – because friend, when you see what it’s supposed to look like, you have to admit it can’t come from just inside yourself!

            Today, reading II Peter chapter 1 (I only got through verse 9), God really highlighted this for me.  Basically, it says this: “Let excellence supplement your faith; let the knowledge of what is right and wrong inform what excellence looks like; let this knowledge inform and produce self-control (as opposed to the world’s idea of knowledge setting you free from restriction, the biblical idea of knowledge sets you free from self and sin); let perseverance strengthen your self-control; let a God-ward heart – rather than self-reliant one – supply strength for self-control; let godliness not be self-focused or self-isolating, but let it cause you to focus on the good of the community of believers as well as the world at large.”  This is love.  This is the how of it. 

            It then goes on to say that any lack in these things – in any area – will make me short-sighted.  That means I will end up focusing on myself and on temporary things rather than others and eternal things because I will tend to leave God out of the equation.  In forgetting His grace to me, I will lack grace for others.  I will become blind to my own sin and forget the sinful state God found me in and cleansed me from. This will in turn make me self-righteous and judgmental - the very opposite of love.

            So, what does this have to do with my discussion on books?  Just this.  The fictional O’Malley siblings are wonderful.  I love the example they inspire me to follow.  They help me put concrete “flesh” on an abstract “idea.”  But...they are fictitious.  The real world of relationships is much messier than it is in the imaginary O’Malley realm.  That, however, doesn’t change God’s command to me to love others.  In fact, He often has to remind to me love people more than need people, and this is easier for me in some areas than others.

            This year, I’m praying for an increased capacity for loving others.  I don’t expect it to be easy, and I don’t expect to always get it right; in fact, I know I will fail way too much.  I do, however, expect for God to answer my prayers, give me strength, and help me grow.  That’s one aspect of the faith and hope part. 

            Why is this so important?  Because in John 13:34-35 we find that Jesus said this to his disciples: “A new commandment I give to you, that you love one another; as I have loved you, that you also love one another.  By this, all will know that you are My disciples, if you have love for one another.”  

            Dear God, increase my capacity to love others! 

Saying "Good-bye" to Tiny Tina

January 20, 2017

            Where do I begin? Well, you all know the beginning of the story, so I guess I don’t need to start there.  Just as a recap, though:

            Tina entered our lives on November 23, 2016 weighing in at a measly 1.05 kg (2 pounds, 5 ounces).  By birthday, she was 1 ½ weeks old – by gestation she was between 28 and 29 weeks.  She was itty-bitty; preemie clothes swallowed her up.

            Tina came from Mercy Rescue Trust, the same children’s home Chloë came from.  The arrangement was for Roger and I to take care of her until approximately her due date (which would have been February 12 – ish) so we could give her some one-on-one love and care until she was a bit stronger and more, well, robust. 

           

            Tina could barely cry when she first arrived.  She didn’t have the muscle tension of a full-sized newborn.  Most newborns, when you lay them on their backs, bring their feet up by bending their knees, and bring their arms in to their chest.  Tina just lay flat.  We had to wake her every 3 hours around the clock at first in order to feed her through her feeding tube, but within a couple of weeks she was strong enough to not need the tube. 

            Tina gained strength and size quickly.  By Dec 11, she weighed nearly 3 pounds; by December 19 she weighed just barely over 4 pounds; by January 6^th she weighed 5 pounds, 11 ounces; and by Wednesday, January 18 – 8 weeks after she arrived at our home - she weighed just over 6 ½ pounds!

            As you can imagine, Tiny Tina totally worked her way into our hearts.  By this past Wednesday, she basically looked like a small newborn…but with more experience and knowledge in her face.  She was active, followed our voices, maintained eye-contact, and was beginning to reach out to bat at and grab things – like my hair J

            Because Roger was going to be away to spend time at RVA with Amy and Josiah this weekend, I had called Jedidah (the director of Mercy Rescue Trust) to ask if she could take Tina for the weekend because while Tina had graduated from every 3 hours to every 4 hours for feedings, doing that around the clock while still taking care of my own toddler by myself for 4 days was daunting.  Jedidah had told us all along that if we ever needed a break, to just let her know.  But because we were only three weeks away from her due-date anyway, we decided to go ahead and make Wednesday, January 18^th, Tina’s turn-over date. 

            All day long I kept thinking, “This is the last time I’ll do this….,” and “That’s the last time I’ll do that…”  I held her a lot that day – and cried some when I let myself think too much…like I am now…

            We had Jedidah over for dinner, I gave Tina one last bottle from me, and then we said good-bye.  I had warned Jedidah that I would cry.  We talked a little bit about it before she left.  She, too, felt a bit strange – taking a healthy baby from a loving family environment and taking her to a children’s home just seemed wrong.  But as I said to Jedidah, there is a family out there who needs her – and whom she needs. 

            I miss that tiny person sleeping in the bassinet in my room.  I’ve actually had time to make some curtains, some throw pillows…sleep… but I wouldn’t give up my time with Tina for anything in the world. 

            A lot of people said they could never do what we did because they would get too attached and it would hurt too much to let the child go.  Yes, you could.  Does it hurt?  Like the dickens.  I almost felt as if I were giving up my own child… I was her “womb” for 8 weeks, after all.  There’s an ache – an emptiness inside me and in our home.  Even Chloë was asking about “Tia” today.  But there is also a joy that comes from knowing we gave this precious child a chance at life.

            I’ll admit it’s difficult not knowing what her future will be.  Will she go to a family who loves her?  Will her father love her?  Will she get an education?  Will she go to church?  Will it be a church that teaches her the truth?  Will she know Jesus as her Savior?  The first and last questions are the ones that weigh heaviest on my heart – and they are things I have no control over.  I know Jedidah and the staff at Mercy Rescue will do their very best to place Tina in a loving home, but some things we have to just leave in God’s hands and be willing to not know.  Like David in Psalm 131, I must not concern myself with things that are too profound for me.  I don’t know God’s plans…but I have to trust them as I rest quietly in Him.

            I do know I will be praying for her.  I also know I’d do this again…even though it hurts…because there is greater joy in obedience and love.

            You won’t remember me, precious Tina, but I will remember you; you will forever be a part of my heart. God go with you, Precious One.  Mama Julie loves you.

This is Tina the day we got her.  Poor baby spent a week and a half in the hospital not getting very good care.

She was so tiny.  The pictures don't do justice to how very little she was. You can kind of see by my thumb there.  Her calf was the same circumference as my finger.  Her preemie clothes totally swallowed her up.

This is Roger, Me, Chloë and Tina just before we said good-bye.

Not the greatest picture, but I love this one of Chloë holding Tina.  She was so excited! But she just wrapped her arms around her and said, "Awww...baby..."  and she would pat her very tenderly.  It was really sweet.

Welcoming the baby Jesus this Christmas season...

December 11, 2016

Merry Christmas everyone!

I can't believe another Christmas is upon us - and the end of another year. As our family was doing Sunday morning Bible study together, Roger started us out from the very beginning; in Genesis chapter 3 with God's first proclamation of the Gospel. Speaking to Satan, God said, "I will put enmity between you and the woman, and between your offspring and her offspring; he shall bruise your head, and you shall bruise his heel.”

We talked about several reasons why Jesus had to actually come to earth as a man; to save us from our sins, to be able to be a high priest who understands us and has compassion on us, and to crush our enemy. This is the simplified version...

We all know, of course, that Jesus wasn't born on December 25th. And there are many Christians who choose not to celebrate Christmas for various reasons. Some say that we shouldn't celebrate the birth of Christ - that his death, burial, and Resurrection are what are ultimately important. And yes, of course. The question was asked of Amy and Josiah this morning: Could God have saved us without sending Jesus? Could He have? I supposed He could do anything He wanted. But the beauty of the incarnation is Emmanuel; God with us.

Jesus is the very face of God - the express image of His likeness. In Christ we see not only God's holiness, but also God's love, God's grace, God's mercy, God's compassion...John 1:17 says, "For the law was given by Moses, but grace and truth came by Jesus Christ." Emmanuel; God with us. Wow. God chooses to dwell with us! The question remains, what will we do with Emmanuel? Will we welcome him and worship him? Or will we, like the inn-keepers in Bethlehem, find no room for him in our inn?

This Christmas, we are reminded of this in another way as well.

I've seen some things on social media lately about "unnecessary and unwanted children" flooding the foster-care system because of pro-life legislation being passed. I don't think Jesus considers any child "unnecessary" or "unwanted." God, Himself is the giver of life; life is a gift.  The people in Mary's community may very well have considered Jesus both "unnecessary" and definitely "unwelcome." His was a life surrounded by shame and disgrace and inconvenience. But God often uses the shameful things of this world to confound the wise. Jesus gives us the example, both in word and in deed. "Let the little children come to me," he said...and did so, astounding the adults who viewed the children as entities to be seen and not heard. In a chilling passage of Scripture in Matthew 25: 31-46 He said, "As you do it to the least of these, so you do it to me," and, "As you do NOT do it to one of the least of these, you HAVE NOT done it to me."

Children are valued in God's economy.

This Christmas, God has given our family the privilege of welcoming "one of the least of these." Her name is Tina. Tina was born about 28 weeks gestation, according to the hospital, and was promptly abandoned. At 1 week old, my friend Jedidah (who runs Mercy Rescue Children's Home), began working to "rescue" her from the hospital. Tina was strong, but not being well fed or cared for. It's not that the nurses don't care, but there are so many who need care, and so few staff to do the work. Tina was abandoned, so there was no family to help care for her - she just didn't rate the time and attention needed to keep her alive and healthy.

The weekend before Jedidah was able to get her released from the hospital she called me. "It's okay to say no, but is there any way you could help out with her for a while?" I told her I'd run it by Roger and get back with her as soon as possible.

Roger and I talked about it; it was a really busy time for us. Chloë is a total handful of a toddler right now; I was in my very last week of my counseling class, and my final exam was a 16 page research paper on attachment disorders; Amy and Josiah were coming home and needed our attention. We didn't think it was possible to add a 28 week old preemie who would need around the clock feedings to the mix. We made the decision to say no.

That night as I worked on my research paper, I was writing about the good observations and recommendations secular psychologists have made about children who have been robbed - for a variety of reasons - of the chance to form attachments; observations and recommendations we need to listen to and be aware of. At the same time, secular psychologies only get half the story - if that - because they discount the reality of the spiritual battle these children are embroiled in. They don't realize that "...we do not wrestle against flesh and blood, but against the rulers, against the authorities, against the cosmic powers over this present darkness, against the spiritual forces of evil in the heavenly places." (Ephesians 6:12) God began to speak to my heart and empress on it that His people need to be willing to stand in the gap for these precious, helpless, most vulnerable little ones. They are victims in a plan of attack to obliterate God's image from the face of the earth. Satan knows he's lost the battle, but the battle isn't over yet, and he still has his sting. Is there ever a "convenient time" for spiritual battle? "Oh, I don't think I'll go into spiritual battle today; I have too much to do."

Sounds a lot like that passage in Matthew 25..."Then he will say to those on his left, ‘Depart from me, you who are cursed, into the eternal fire prepared for the devil and his angels. For I was hungry and you gave me nothing to eat, I was thirsty and you gave me nothing to drink, I was a stranger and you did not invite me in, I needed clothes and you did not clothe me, I was sick and in prison and you did not look after me.’

“They also will answer, ‘Lord, when did we see you hungry or thirsty or a stranger or needing clothes or sick or in prison, and did not help you?’

“He will reply, ‘Truly I tell you, whatever you did not do for one of the least of these, you did not do for me.’ (vs 41-45) - "My name was Tina..."

I talked to Roger after that and lo and behold, he'd been thinking the same thing. Imagine that. We called Jedidah and told her yes.

So, Tina came. Oh, the precious little one. And yes, we are tired. But she has been rescued from the death grip of her Arch Enemy.

Since then, Roger and I have felt led by God to work with Mercy Rescue Children's Home and help them when these tiny ones come their way. Amazingly, we have experience, having done this with both Chloë and now Tina. We've learned how to handle these tiny ones, how to feed them from a feeding tube, how to keep them warm, and how to teach them to eat from a bottle. Most of all, we love them and give them one-on-one contact that is so imperative to their growth and development (Jedidah has told us she sees and unbelievable difference between infants who have this one-on-one attention and infants who do not). This time around we also have a good pediatrician to consult with; I have her personal phone number and What'sApp contact and can get in to see her immediately when the need arises. These preemies only come around a couple of times a year, but that's good, because when Tina goes to Mercy Rescue, Roger and I are going to need some good solid nights of sleep!

So, we are asking you if you want to get involved. It'd be good to have things on hand when the need arises instead of scrambling around trying to improvise at the last minute. There are two ways you can help; one more immediate, and one more future.

First, there are supplies we need to stock up on. Preemie diapers, formula, bottles and nipples, clothes, pacifiers, etc. I have created a "wish list" on Amazon.com that gives details for all of this. If you want to help out, please go to this link: https://www.amazon.com/gp/registry/wishlist/19X2PEG4Z7A4J/ref=nav_wishlist_lists_2  If you wish to help us with these needs, you can find our mailing address in my profile.

Second, these precious ones will need temporary sponsors once they go back to Jedidah at Mercy Rescue Children's Home. The reason I say temporary is because one of the missions of Mercy Rescue is to match these precious children with Kenyan foster parents who will love them and raise them as their own. This is no small task and takes a lot of vetting and follow-up, but I love this part of Mercy Rescue. Until that point, though, diapers and formula are really expensive. For an infant, I estimate the sponsorship would be between $65 and $70 per month. This would cover diapers, formula, and medical care. If this is something you would be interested in, you can contact Jedidah on their website: http://www.mercyrescue.co.uk/ Or, you can find them on Facebook. You can even contact me if you are interested specifically in one of the babies we help with. When the babies are with us, the costs will come out of our pocket; that's the way we want it; but we can help you get in touch with Jedidah for when a particular baby will be back with her and you can begin sponsoring the child at that point.

In the next day or so, I will set up a page on this blog that will keep track of the children. Right now, of course, there is only Tina.

Would you please consider helping us help these precious little ones today?

Growing up...

September finds me thinking a bit nostalgically - it's my birthday month (and my mom's...and Chloe's). This year, this week in fact, I will turn 44. I don't feel 44...or maybe more accurately, I don't feel like I should be 44. Actually, I often feel like I still need to grow up. Maybe it's because I was the baby of my family by 6 years (and the only girl). Maybe it's because I got married when I was 20 (I've been married more than half of my life now...to the same man :-));  I've never really been independent.  On the other hand,  I have been married 23 1/2 years...I had to grow up at least some to manage that...

We've been in East Africa almost 8 years now; I think I've done most of my growing up here...well, a lot of it, anyway. Kenya will force that on you, somewhat. I've had to come to terms with hard truths here...ugly ones - truths about human nature and living in relationship with difficult people, about desperation and destitution...hate, discrimination, abandonment...hopelessness...man's inhumanity to man (yeah, I know; that's in America, too. Live here for 2 years and then lets talk...) I've had to learn hard truths about myself as well - that I am more like "the worst of these" than unlike them.

But there are also beautiful truths I never would have known apart from the difficulty and ugliness. Here are just a few:

*I'm learning there are beautiful people to be found everywhere, in every culture. We may have our differences, disagreements, and different ways of looking at and interpreting the world; but I've met some of the most wonderful people living here: Kalinjins, Luyahs, Kikuyus, Kisiis, Bukusus, Luos, Pakistani Muslims, Indian Hindus, Christians from all over North America, Europe, and Asia (ashamedly, I grew up thinking the only good Christians were in America), as well as non-Christians from all over the globe...really good, precious people. People who've earned my respect.**

*I'm learning I often interpret the Bible through the lens of my culture when really what I need to do is interpret my culture through the lens of the Bible.

*I'm learning it is possible to live contentedly in the midst of sacrifice. I've met Christians who daily and joyfully sacrifice so much more than I could ever dream...not out of duty to appease some unpredictable god, but out of love for the God of Love as well as for the people He loves.

*I'm learning that God's time-table and mine usually are NOT the same...but that His is generational and eternal in perspective as opposed to mine which is usually centered on, well, me...and the here and now.

*I'm learning the objective is faithfulness, not "success." Or maybe that faithfulness is the success.

*I'm learning it's okay to laugh at myself...and on top of that, it's okay if others laugh, too (Oh, yes; you either learn this lesson in East Africa or live in irritation and bitterness!).

*I'm learning that my "rootedness" cannot be found in any thing I own, in any place I live, in any ministry I do, or in any person I love. It must rather be found in my place in Christ, for that's the only thing I have that is guaranteed.

*I'm learning it's more important to love people than to need people.

*I'm learning God often gives me more than I can bear; that it's okay to be stretched beyond my strength to endure because it's not beyond God's strength. Scary lesson.

*I'm learning that God richly blesses and uses the ministries of people with whom I have theological, biblical, social, and political disagreements. This is another one of those, "I'm ashamed" kind of lessons. Oh, my...the pride...

*I'm learning that I can trust God's Word...even when I don't get it.

*I'm learning that I can trust those I love into God's hands...even when He walks them through times of suffering and/or rebellion.

*I'm learning it's okay to invest time and energy in friendships even though I will have to say "good-bye."

*I'm learning that my beloved country is not the answer to the world's problems (and in fact, is often part of the world's problems)...Christ is. And not Christ dressed up as an American, either.

*I'm learning it's okay to change your game plan in the middle of the quarter (you'd think homeschooling would have taught me that...)

*I'm learning it's okay to risk much for love.

*I'm learning that making sure I have all my 'needs' met isn't really living. Instead, loving to the point of sacrificing my 'needs'...that is living.

*I'm learning that education, ministry, "finding my purpose," having leisure time, vacations, and retirement are all momentary things...children are eternal.

*I'm learning it's okay to give myself away for things that will never die.

*I'm learning I have a whole heck of a lot to learn...

**People often accuse Christians of thinking they are better, more moral, than everyone else. Unfortunately, those accusations are far too often on target. That, however, is the failure of human nature, not of Christianity. Actually, the Bible teaches two complimentary truths: 1. Man is made in the image of God (Gen. 1 - 2) and is capable of doing good and moral things (Romans 2:14-15). In that sense, any man or woman can be a "good" man or woman. 2. On the other hand, the Bible also says that there is NONE good. (Romans 3:9-18) In this sense, human kind is being compared to the holiness of God - and found completely lacking in our very essence (Romans 1). Therefore, Christianity isn't about anyone or any group of people being better than another; it's about all of us "falling short of the glory of God," failing to worship Him as God, and being entirely incapable of pleasing Him or of gaining His favor. While we were in this condition, however, God sent His Son to live a perfect life on our behalf; to take the punishment of our failure, sin, and rebellion; to purchase our freedom from the slavery of sin by spilling His blood and dying on a cross; and to raise from the dead in victory over sin and death to give us the hope of eternal life (Romans 5). Christianity says we are all on the same level playing field...all in the same boat...without hope and in need of rescue; our goodness, social status, tribe, education, wealth, or religion are not enough - don't even come close - to getting us safely to the goal or the shore (Philippians 3:7-11). Our pride doesn't like this...but our pride is the main fruit of our problem. However, becoming a Christian doesn't make us "better" than anyone else, either. The Apostle Paul said in the first chapter of his letter to the Christians in Rome, "I am a debtor to the Jew and the Greek; to the wise and to the unwise." Because Paul knew first hand the power of the Good News of Jesus Christ to forgive him and change him, and put him in an intimate relationship with God, he felt a great responsibility to share this same power with others. This is why Christians share their faith.

Unto The Least of These: A Story About the Plight of Handicapped Children in Rural Kenya

Picture credit: Kevin Carter
Sudan; 1993

        Many of you may have seen this picture from a link I posted on my Facebook page. The link tells the story of this precious little girl in Sudan and the photographer who hid behind a bush taking her picture for twenty minutes. The little girl was trying to walk to a feeding station not far from the location the picture was taken when she collapsed, unable to go on. The photographer, Kevin Carter, never picked her up to take her to the feeding station; he just looked on and snapped pictures as this vulture landed and waited for the child to die. He shooed the vulture away once he got the picture he wanted, and the little girl did manage to finally get up and walk to the station.

       A little later that year, 1993, this picture won Mr. Carter a Pulitzer Prize. He told a friend, "I'm really, really sorry I didn't pick the child up." Haunted by the horrors he had seen on the field, Mr. Carter killed himself a few months after winning the prize.

       Indeed this picture is haunting - almost unbelievable. If it doesn't break your heart, there is something seriously wrong with you. Sorry. Just sayin'.

       But this blog post isn't about this little girl. This is a story about another child - a child in my own back yard - a child with a name and a face - a child I know personally. His name is Teddy.

Beth Ann Downer posing with Teddy the day he left In-Step for his new "home'

       Teddy is a precious, chunky 8 year old little boy with severe autism. This is a picture of what Teddy used to look like. Teddy arrived at In-Step Children's Home when he was about 7 months old and has grown up there along with many other orphaned and abandoned children. Last September, after Teddy started being very aggressive with the babies at In-Step, my friends (Jeff and Carla Picicci - the directors of In-Step) made the difficult and heart wrenching decision to find another, more suitable situation for him. They searched all over our area of the country and found a place that specialized in caring for severely handicapped children. Teddy would live at this new home and even have an opportunity to go to a school that also specializes in working with handicapped children.

       About a month ago, Adam, one of the American workers at In-Step, received a call from one of Teddy's new caretakers. Teddy is sick and in the hospital, she told him. Please come see him. The next day, Carla went to the Kitale District Hospital to see Teddy. What she saw shocked and horrified her. Teddy was lying in the hospital bed totally naked, except for a sheet...a sheet that covered his emaciated, skeletal body. He looked much like the little girl in the picture from the Sudan; his arms, legs, and ribs were nothing but skin stretched over bone; his stomach protruded from malnourishment, and his lower legs were swollen and ice cold. Teddy, once active and always on the go, didn't even have the strength to move. Though he was unable to lift his head, he managed to smile at "Mama Carla." The doctors were running all manner of tests looking for a reason that Teddy would have stopped eating.

       Medical care in rural Kenya is complicated. One of the things that complicates the process is that Kenyans will often wait until they or their child is on death's door before admitting them to a hospital - even though Kenya has universal health care that specifically pays for hospitalization. Even so, it was difficult to understand how any caretaker could wait for a child to be in this appalling shape before seeking medical attention.

Teddy in the hospital

       As the testing continued, it became clear there was nothing wrong with Teddy - except extreme malnourishment. In fact, his diagnosis was "end stages of malnourishment." As Carla and her team investigated what had happened to Teddy, a frightful scenario began to reveal itself. Carla was told that Teddy had been locked away in a small room for months, and it is believed that the school fees Carla had sent for his "special education" had been pocketed by the caretakers while Teddy sat stripped and alone - forced to eat off the floor the food they threw into his room once a day.

      

       Can you imagine the horror? One day you're living in a beautiful, loving, family environment; the next you're being treated like a rabid dog. Jeff and Carla felt sick. They had left him with people they trusted - Jeff had even been to visit him several months before. Yes, he had lost some weight, but that was to be expected. They'd had no idea what was going on behind closed doors.

       

       This is a terrible story, to be sure; but why am I blogging about it? Well, for two reasons. The first is to make you aware of the plight of physically/mentally handicapped children in rural Kenya. It's difficult for us in the West to wrap our heads around the way these precious children are treated, but this is the unedited, ugly truth of the situation here. And you need to know about it. 

      

       The second reason is to tell you what has come as a result of Teddy's situation. 

       Jeff and Carla have taken Teddy home to In-Step. With 158 children to care for, they still don't have the facilities to fully help someone like Teddy; but they are determined to try because, unfortunately, there are just no facilities in this area of Kenya for children in this condition. The mentality in rural Kenya concerning severely handicapped children is not very different from the attitude shown by the "caretakers" who were supposed to be looking after Teddy; throw them into a room never to be seen by the public. Even institutions that cater to severely handicapped children often just have the children laying on mats all day.

       

       In light of this dire situation, Jeff and Carla feel called of God to start a vitally needed ministry that cares for severely handicapped children. Their new ministry is called Stepping Stones. It's not something they ever saw themselves doing, but it is a ministry God has already seen fit to place them in the middle of since, along with Teddy, God has sent to In-Step seven other children with severe physical and/or mental handicaps (you can read about them on their web-site which is listed at the end of my blog). In-Step does not at all have the funding for this ministry, but they are stepping out in faith knowing that what God has called them to, He will also provide for; but this is a very long-term commitment for them. None of these children will ever "grow-up" and leave In-Step to start new lives as adults, and that is a bit daunting.

       

       I was out at In-Step just yesterday taking my daughter Amy; she is volunteering there with the handicapped children one day a week during her 6 week school break. They now have hired a special-ed teacher and a physical therapist to work with the children (actually, the physical therapist has been with them a while). They are working on remodeling one of their buildings specifically as a restful but engaging place for these precious children to learn and feel safe. My high school friend, Beth Ann Downer, is overseeing this new ministry, making sure that everything is being done in the best interest of the children.

       

       Teddy is slowly improving. The swelling in his legs has gone down; but, you can still see his ribs, his arms and legs are still very small, and his belly still protrudes (though not as much). It will take time for him to recover from his horrific experience. But God makes beauty from ashes, and one of the beauties He is making from the ashes of Teddy's experience is Stepping Stones Ministry.

       If you would like to donate to this very worthy and much, much needed ministry, or if you would like to sponsor one of these precious children, you can do so at www.rehemainstep.com  

       "When the Son of Man comes in his glory and all the angels with him, then he will sit on his glorious throne.  Before him will be gathered all the nations, and he will separate people one from another as a shepherd separates the sheep from the goats.  And he will place the sheep on his right, but the goats on the left.  Then the King will say to those on his right, 'Come, you who are blessed by my Father, inherit the kingdom prepared for you from the foundation of the world.  For I was hungry and you gave me food.  I was thirsty and you gave me drink.  I was a stranger and you welcomed me. I was naked and you clothed me.  I was sick and you visited me.  I was in prison and you came to me.'  Then the righteous will answer him, saying, 'Lord, when did we see you hungry and feed you, or thirsty and give you drink?  And when did we see you a stranger and welcome you, or naked and clothe you?  And when did we see you sick or in prison and visit you?'  And the King will answer them, 'Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.' 

Then he will say to those on his left, 'Depart from me, you cursed, into the eternal fire prepared for the Devil and his angels.  For I was hungry and you gave me no food.  I was thirsty and you gave me no drink.  I was a stranger and you did not welcome me, naked and you did not clothe me, sick and in prison and you did not visit me.'  Then they also will answer, saying, 'Lord, when did we see you hungry or thirsty or a stranger or naked or sick or in prison, and did not minister to you?'  Then he will answer them saying, 'Truly, I say to you, as you did not do it to the least of these, you did not do it to me.'  And these will go away into eternal punishment, but the righteous into eternal life." Matthew 25:31-46

**Teddy's story is told and his pictures are used with the express permission of the directors of In-Step Children's Home

Our Own Little Miracle...Chloe's First Court Date

     As you all probably know, adoption in Kenya has become absolutely nuts.  The government of Kenya, under the leadership of Uhuru Kenyatta, has basically SHUT DOWN international adoption...and even residential adoption if that resident is not Kenyan.  There are many families stuck in limbo with a child they love and no way to move forward.  I know of one family - I don't know them personally, but friends of mine here in Kitale do - who had a FINALIZED adoption.  FINALIZED.  They had started their adoption process before the moratorium, but all their court dates took place after the moratorium was already in place; the judges were continuing to push through adoptions that had already begun.  Because the court dates were after the fact, Canada (their home country) is requiring extra documentation to verify the legality of their adoption, but the Children's Department has been ordered by the Secretary of the Cabinet to cease writing or signing any documents.  Long story short, that means this family is stuck in Kenya for the foreseeable future.  The father had paternity leave time, which he used to stay in Kenya for the mandatory time-period before the adoption was final.  His leave is now up, but they can't get a passport for their son because of the red-tape.  He ended up having to go home to Canada without his wife and son.  He is now in the process of selling their home so that they will have money to live on here in Kenya until things are worked out.  Meanwhile, the wife has been in Kenya on a visitor's VISA for a year.  Kenya doesn't like to keep granting extensions, so she doesn't know what will happen when that runs out.

    Needless to say, the situation here is a mess.  My own friends are just waiting for their final court date, but they need a piece of paper from the Children's Department...which of course is under order not to write it.  They do have a judge who is willing to look at their case even without that piece of paper.  The difficult part is, all these things the government is doing aren't even legal....  The international community is beginning to stand up and take notice.  A group of ambassadors from several different countries are filing complaints at the Hague (like Kenya cares anything about the Hague) and the US embassy is even asking for e-mails from US citizens who are caught up in all this so they can put some pressure on the government.  But...nothing is going to change over-night.

     So...as you most likely know, we have filed for guardianship of Chloe.  Guardianship is one step removed from adoption.  We would be considered Chloe's legal parents, and she would even have our last name.  

     Our first court date was June 24th (Roger's mother's birthday <3) .  Our lawyer lives and works in Nairobi, so she basically sub-contracted with another lawyer here in Kitale and is working closely with him to represent us.  Children's court in Kitale is probably like nothing you can imagine.  We met Kiarie (Kee-ar'-ee) at the court building where he informed us that there was a clause on the paperwork for our care agreement with the Children's home that said on June 24th, the director of the children's home would provide the court with an update on the health and well-being of the child.  We didn't even know that clause was there...neither did the director of the children's home.  Kiarie was working on a solution to that problem when a familiar face walked into the court.  Sally is the social worker that works with Jedidah (the director of Mercy Rescue Trust where Chloe comes from).  We greeted one another and as we did, Sally told me she was waiting for Jedidah because they had five children to commit to the children's home that day.  Hmmm.  

     Meanwhile, we waited and waited...and waited...and waited...and waited for Kiarie to get some things together and also for the judge to arrive and start hearing all the cases on her docket for the day.  Kiarie finally came to get us, and we went upstairs to a very narrow hallway (with no seating) and stood there with about 20 other people.    Minutes after going upstairs to wait, Jedidah came in with several babies.  We stood there and chatted for a view minutes while Roger walked Chloe around the far end of the hallway. Jedidah was called into the judges room, and I took Chloe, who promptly fell asleep, so I sat with her on the top step of a staircase and leaned against the wall.  

     About 15 minutes later, Kiarie stuck his head out the door of the judge's room and called for us to come in. There were already about 15 people in the judge's room waiting for their cases to be heard.  The room was not very big, and in the center was a large table around which sat the judge (at the head) and various lawyers and children's officers - 3 on each side.  There wasn't much space for any other chairs in the room, so along two of its dirty and paint-peeled walls was a crude bench with no back.  A guard motioned me to squeeze past several people and to sit next to Jedidah.  He, of course, had no idea we knew each other.  I could barely hear anything going on...in Kenya, when people speak professionally, they speak very, very quietly.  I don't even know how they can hear one another.  But Jedidah's case was called, the children's histories were given, and the judge promptly committed them to Mercy Rescue Trust.  As Jedidah was getting up to leave, our case was called.  The judge looked at our care agreement and asked for the report on Chloe's well-being.  The children's officer working with Jedidah knew us and our relationship with Jedidah, so she informed the judge that the director of the children's home was present and could give an oral report regarding Chloe's welfare.  Jedidah stood up, gave the report, and then left.  The judge accepted the oral report and issued us our second court date.

     It was unbelievable.  Neither we nor Jedidah knew that we would need to have Jedidah there in the courtroom with us that day.  But God did.  Jedidah doesn't always have children' to commit...they wait until they have at least five and then do them all together.  That could have happened the week before or the week after.  But God knew we needed her there that specific day.  He answered a prayer we didn't even know we needed to pray.  Isn't that just like him!  Without Jedidah there that day, our case would have been delayed.  But, it wasn't.  

     Our next and final court date is July 22nd.  On that day, Kiarie will actually present before the judge the case as to why we should be granted permanent guardianship of this precious girl.  Please pray for this process.  It's not a fore-gone conclusion that we will be granted this.  Kiarie told us to pray for a female judge.  The female judges, he told us, really care about the children and want to do what is best for them.  The male judges, well, Kiarie said, there's just something wrong with men when it comes to this kind of thing.  He said it...not me!  :-)  Well, maybe it's true in Kenya.  I don't know; but, I'm sure he has reasons for saying it.

     So, that's where we stand with the Chloe situation.  Thank you for your prayers!  God is good...no matter what.  He has a plan for us and for Chloe.  Our desire is that  his plan includes having those two plans coincide, of course.  I'll let you know how it goes...