Beauty in Suffering: Honoring Joseph

- from Christy

"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing . . . Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him." James 1:2, 12

People often ask us, "How do you do it?" How do you face what God has called you to with a spirit of faithfulness and a desire to be joyful no matter what? We of course share our complete inability without the sustaining grace of our Heavenly Father, but we also share the fact that we know God has been preparing us, for many years, individually and as a couple to face the trials and joys of Autism. Yep, you heard me right. There can be joy and indescribable beauty in suffering, and one of the ways God taught me this was through the joy and heartache of losing Joseph.

Joseph Todd Nance was born on July 6, 2005. He surprised his parents Tommy and Stefanie by arriving prematurely during their summer beach trip. After a helicopter ride to a hospital equipped to care for a baby being born six weeks early, Stefanie gave birth all alone to their first born. When they returned home, they set out on the adventure of all first time parents of learning to care for and love their baby boy. They could have been considered more cautious than most, documenting every feeding, every time they gave him gas drops, every diaper change, and the time and length of every single moment that Joseph slept. They were meticulous, and cautious, and superb at being Daddy and Mommy to their precious Boo. 

I had grown up beside Stefanie's family my entire life. She knew my love for children and she knew my experience with caring for a premature baby. Our Jack had been born ten weeks early, and he spent the first six weeks of his life at Duke. I was thrilled when Tommy and Stefanie asked me if I was interested in caring for Joseph when Stefanie returned to work. They knew that I would care for Joseph like he was my own, and our children Olivia and Jack were excited to have a new baby and future playmate at our house. Joseph provided me that fulfillment that I longed for that comes from caring for a new baby. And so we settled into our routine of early morning pick-ups at Hico Baptist Church (which was halfway between Tommy and Stefanie's house and our own), and of Joseph's scheduled feedings, diaper changes, and naps. I had no idea what God had planned, and how we would forever change our lives on October 18, 2005.

That day started like any other. Jeremy was home for a bit that morning, and so he kept Olivia and Jack at home while I made the trip to Hico to pick up Joseph. I can see it like it was yesterday. After Stef gave some instructions, kissed Joseph and said her goodbyes, we were off to the house. The morning was uneventful other than Joseph having a monstrous spit up after eating his bottle and before his midday nap. Spitting up was common for Joseph, but he got me good that time. Let's just say it required a complete change of clothing on my part. After I changed Joseph, I got him all settled down for his nap. The kids and I played with toys in the same room where he slept, I put away laundry, and I checked on him several times. Right before putting Olivia and Jack down for their naps, I checked on Joseph again right before 12pm. I will never forget that moment. The moment when I realized that Joseph wasn't breathing. The moments that followed felt like an eternity. Olivia and Jack were by my side the entire time. They are moments that come to my mind often. Some of the most heart-wrenching and painful moments of my life. But in the midst of agony, there was also beauty. Tommy and Stefanie were unwavering in their care and concern for me. In the midst of the worst moments of their lives, the fact that they even thought of me leaves me speechless to this day. Tommy crawling out of the police car just to embrace me and tell me everything is going to be okay. The gift of being able to dress Joseph for the last time. The beauty of kneeling before Stefanie with Joseph's head in my hands while she called out to our Heavenly Father brokenhearted but rejoicing in praise for the gift of mothering Joseph. I remember locking eyes with Tommy as she prayed. We both knew that it was as if heaven had opened, and Stefanie was surrendering her most precious gift back to Jesus. I felt as if I was truly on holy ground. Joseph's memorial service was perfect, and the love that Tommy and Stefanie had for him could not have been more beautifully conveyed than when Stefanie read the letter she had written to her sweet boy. I could go on and on.

Jeremy often reminds me that we make God so small when we try to pinpoint one specific "why" for the trials He brings into our lives. God has used Joseph's life and death to touch many people, and I know that He is continuing to use Tommy and Stefanie to this day to encourage others. I promised Joseph, as I held him for the last time, that my life would change. That I would be better for loving him. God has grown me and changed me through all of this, but it hasn't been easy. I have dealt with immense guilt for not being able to save Joseph. It has been a lesson in surrender. Surrender to God's sovereignty. It meant acknowledging that I trust and believe that God is the giver and taker of life, that He appoints a specific day for every man to die, that He orchestrates the events in our lives primarily for His glory, but also for our good if we love Him. I would be remiss if I did not mention how God has used the unconditional love of my husband and the gift of his wise council to see me through what would have been unbearable to endure without his loving support. Jeremy has been my greatest confidant. He knows my thoughts in my darkest moments when I am allowing myself to get swallowed up in grief. Those moments when I am tempted to make God small and me big. None of this is about me. It is about my Heavenly Father, and how He chose to use the life of a precious little boy named Joseph Todd Nance to bring Him infinite glory and to remind us all that His ways are past our understanding and that we can find comfort in knowing that He indeed brings beauty from the ashes of our lives.

Choosing to see the beauty in the suffering of losing Joseph, prepared me to see the beauty in Autism. "Oh, the depth of the riches and wisdom and knowledge of God! How unsearchable are his judgments and how inscrutable his ways! For who has known the mind of the Lord, or who has been his counselor? Or who has given a gift to him that he might be repaid? For from him and through him and to him are all things. To him be glory forever. Amen." Romans 1:33-36

The Impact of Autism on the Rest of the Family

- from Jeremy

We've talked a lot on here about the boys and their needs, and also about how Christy and I feel about and are impacted by their needs. Today I want to focus on the impact that the boys have on the other members of the family and the impact that others have on the boys and us. Don't worry if you didn't get all of those prepositions - just keep reading and all will be revealed.

Let's start with siblings. What must it be like to grow up with a severely Autistic younger brother? Or better yet, to grow up with two severely Autistic older brothers? Jo and Jay are bracketed by their older siblings, Liv and Jack, and by their younger sibling, Doo-doo. We used to call him that because it rhymes, but now it's more for his stinky attitude. Liv can remember when Jo was a baby, before the disgnosis. She has lived through the changes that have come into our lives with this disorder. Her interactions with Jo are not unkind, but she does have to watch for his aggression as he is almost her size. She also takes care that he not get in her room unsupervised as he is rough on frilly and fragile things. It's like she had a baby brother that got bigger, but never got any less baby about him. It's similar with Liv and Jay. She remembers when we brought him into our home through adoption, and like Jo, he has always been her baby brother and in most of the ways that matter in human relationships, he is still her baby brother. That doesn't sound like such a sad thing until you consider the boon and felicity that a sibling relationship can be. What has she missed and what will she be deprived of in not having a strapping brother Jo to defend her and a clever brother Jay to befriend her?

Jack is similar in a lot of ways, but also more affected in others. He remembers, but not as well, the times before Autism. In the same way his baby brothers have stayed babies. But Jack lives with them in a visceral and muscular way that Liv doesn't. Jack shares his room from necessity while Liv spares her room from calamity. There is a rivalry between he and the boys that apparently doesn't enter into Liv's mind. It is easy for me, having never had a disabled sibling, to judge Jack harshly for reacting the way he does to Jo and Jay, but I know I'm wrong to do so. It's easy to say, "he doesn't know any better," when Jo breaks something of Jack's, or to say, "he didn't mean to," when Jay spoils something of Jack's making. But the easy thing is seldom the right thing in life. The truth is that Jack is a great big brother. He puts up with a lot from them and protects them from a lot. Now, he is quick of temper and will sometimes lash out and shove Jo or get fed-up and put Jay in a headlock, but he watches for them and he saves them from themselves very often. And he and Doo-doo are thick as thieves and wonderful playmates, even given their age difference. I really don't know how to guide Jack in being a big brother to these guys. I teach him and model for him a kindness to helpless things and a compassion to errant beings, and I pray that the kernel of that truth will guide his thoughts and actions toward his brothers.

The baby is the one I think about the most when it comes to relating to Autistic siblings. Imagine how it is for a three-year-old to have a towering, speechless, frantic and erratic big brother. He has only ever known life with Jo in it. And a lot of what he's known of Jo is assault and battery. When he was little Jo would jump on him. As he started to toddle Jo would knock him down. Even now we keep the baby's hair short so he doesn't get dragged to the ground by it. Jo loves the baby, and the way he shows that love is the same way he shows Christy and I and the furniture and the mirror and the TV - he beats on us. We've taught him to be tough and to steer clear and to keep his back to the wall, but it breaks my heart to see him so defensive around his big brother. Our cultural paradigm is that the big brother may be rough on us, but he's also our greatest defender. Doo-doo has only the first half of that model to ever hope for from Jo.

The baby and Jay-jay is another matter. They're like Sid and Nancy - frighteningly compatible and amusingly explosive. They will play and laugh and tumble around and then scream and cry and run for cover. They have the most parity of anyone in the house - their weight at times is less than a pound different. Judah will wrestle Jalen out of the therapy swing and pin him to the ground, the both of them laughing. Other times on the sofa Jalen will deftly lay his foot along Judah's thigh in just the way that he knows will boil his blood. Shrieks of frustration and murderous anger follow soon after. It may be that with some of the strides we've seen in Jalen's development that one day he and Judah will have some normalcy in their relationship beyond just jousting, but it's a long shot. And Doo-doo has never really been the baby in the house - not truly. He's been one of the babies. And who knows what effect that will have on him in the long term. Will he resent what could and should have been? Or will his blindness to any life but this one allow him to take it all in stride?

And for all three of the siblings there is a big expectation from me and Christy: that they take our place in their brothers' lives if need be. We have regular discussions with Jack and Olivia about the need for them to love their brothers and care for their brothers. We've told them that if something happens to us then they will have to step up and protect these wordless baby-boys from any who would threaten them. We've provided for them to have wealth to do the job should we die, but they will have to supply the heart for the job. Our greatest fear as parents of disabled children is that we won't be there to care for them and defend them. Think of the gut-wrenching abuse that could befall a child who can tell none of his torment, who could make no defense of his own, who would struggle to even make sense of his world apart from the matrix that we maintain for them. So we lean on their brethren to stand in the gap, and that's a lot to ask of a child.

Another class of relation that we think of from time to time is cousins. Jo and Jay are blessed to have a bunch of cousins. Seven here in town with one more on the way, two far-flung cousins on the west coast and tons of cuzzins in South Carolina. Down there in Real Cackalackey we count just about anything as a cuzzin. I loved my cousins growing up and still count them as close confederates. Christy felt a closeness with her cousins as a child that was strengthened by regular family trips to the mountains where they'd all share in the soporific ease of the cabin her grandparents had built. A cousin is something between a brother and a friend, a special link, and a sometimes oasis within the family. And we see great evidence of love for Jo and Jay from their cousins. It gives us a chuckle to see the boy cousins running with them, and it warmed our souls to watch one of the girl cousins walk hand-in-hand with Jo around the yard. But you can't expect kids who don't live here to understand how to best relate to the boys. And we know that due to the needs the boys have that there have been times they got more resources portioned to them than their cousins did - particularly the resource of Papa and Meemaw.

And speaking of Papa and Meemaw. Both sets of grandparents as well as Jo and Jay's greatgrandma Sara have had to grapple with how best to grandparent our special needs boys. Again, we have the cultural paradigm of grandma guiding grandbabies through the customs of the kitchen and grandpa spoiling the young'uns with coins and candy - that doesn't work for Josiah and Jalen. It takes rigorous OJT for grandparents to even feel comfortable left alone with our boys. In fact, once a person reaches a certain physical maturity, they simply cannot be trusted to care for a child that will neither heed your warnings nor detect danger on their own. You have to be willing and able to guard these guys like . . . I want to use a sports analogy here, but as most of you know, I'm incapable. You know how basketball players stick close to one another and jostle around over the ball but never get too far away so as not to let the other guy make a shot. Maybe that's another sport, but you get the idea. If you can't catch Jo before he gets to the road, then you can't watch Jo. And that's sad to me because I was shaped so much as a person by my grandparents and greatgrandparents. I think of my Pawpaw Herd who was spry into his eighties, but not nearly spry enough to catch Jalen when he's doing the turn and burn. Forget going to grandma's house for the summer unless you want grandma in assisted living by the fall. So they look for ways to help, and they find them in abundance. Maybe not the normal grandparenting, but nevertheless showing the love they have in tangible, and sometimes not so tangible ways. Its odd to miss something that you never had, but I miss that Jo didn't get to go fishing as a 5-year-old as I did with my Papa. I miss that Jay never got to play banker in the kitchen at 4-years-old as I did with my Grandma Mary. Jo and Jay love their grandparents, and they are unrestrainedly loved by them, but it's different for them than the others and that stings a little.

I could go on and on. I could tell at length what terrific aunts and uncles the boys have, and they do. And I'm sure it's just as befuddling to them how exactly they should relate to the boys. I could talk about people at church for a long while. They have opened not only their hearts but their buildings and grounds to the boys without reservation. They minister to us daily in ways that others might not notice, but that are vital to our peace and happiness. They pray for us and encourage us and fix us amazing dinners and let us run between their legs in the Welcome Center and all with alacrity and agape love. They don't know quite how to react to the boys, especially when Jo pounds the sofa cushions behind their head or grabs them by the beard. But that's okay. We can't leave Jo under anyone's care, so either me or Christy or Meemaw are always with him, but the brethren find other ways to help. Various ladies work with Jay on-on-one in his classroom, and the church bought a special swing for Jo and provided a room for him to have a very special Sunday School class in. They cheer us on when the boys are making strides, and they didn't fuss when Jo pulled the fire alarm that time. Didn't even say a word - just silenced the alarm and opened the fire doors back up. The boys are devilishly tough to take to church, but the church loves them and us.

Alright, I'm good and welled-up. The point of all this is the same as ever: special people are demanding people, and those who care for them need special grace, but God is so kind to us in all His ways through Jesus. Pray for us, and praise with us that He has been good to this family every single day, and we have confidence that we can trust Him to be steady on.