Several more kids with Joubert Syndrome have passed away recently. Several others have been hospitalized due to various reasons. Not only that, but many "healthy" ones are struggling with extreme behavior and emotional issues, leaving their families grieving for them all over again.
I thought about these precious ones, their heartbroken families, and looked at Marcus and I got angry. Angry that JS has to be in our lives, angry that my son faces challenges in virtually everything he does, angry that we have to check his organ function every year, angry that we have to teach him Braille because he could be blind one day, angry that he can't say what he wants to say, angry that he'll be teased, angry that he can't walk, angry that we have to fear losing him. Marcus gets frustrated because he can't do simple things the way he wants to. Sometimes he'll throw a book if he can't turn a page fast enough. And as much as we want to teach him to be patient and ask for help calmly, inside, I can't blame him. In fact, I want to throw the book across the room for him, sweep him up in my arms, and cry with him for hours because I'm angry along with him, for him.
When Marcus was diagnosed, Mike & I died. Our son died too, or at least the life that we thought our son would live. Don't misunderstand. We over-joyously celebrate Marcus' life today. In fact, we probably celebrate MORE so, in light of his diagnosis. But it doesn't change the fact that the life we thought we would have with him died. And we mourn over it still. This death has forever changed our lives and the way we see this world. It's like a child realizing that Disneyland is a marketing sham and that behind the walls of Small World are rats and cobwebs, and that Mickey Mouse is actually a guy who, after taking off his suit at the end of the day, deals drugs and beats his wife. We can never again be frivolous. Life for us will never again be all butterflies, balloons, and lollipops.
People say that death and suffering are just a natural part of life. But to me, there is nothing "natural" about suffering. You can't tell a woman that it is "natural" for her to be born with ovaries and yet not be able to bear children that she longs to call her own. It is not "natural" to raise children with lifelong physical and emotional disabilities because their biological mothers used drugs and alcohol while pregnant. There is nothing "natural" about giving birth to a healthy, bright, sweet son whose body starts to deteriorate and then dies before he turns 3. There is nothing "natural" about seeing your husband or your father painstakingly take each breath, lose his ability to speak or eat, become blind, and have brain aneurysms before dying. This is just not how God created things to be!
I was surprised to find that this week, it wasn't God's kindness, His mercy, and His promises to love us that comforted my heart. Facing my anger, I was drawn to a different aspect of His character... His wrath. It dawned on me, through the Holy Spirit, that God is angry too. And my anger is a teardrop compared to the raging torrents of the ocean that is God's. Anger is as much a part of God's character as are His love and grace and it was good for me to remember that. To me, it was my Disneyland that crumbled down. But for the Lord, it was His Eden, His creation that once was "good". What He had created to be beautiful has become horrifying ugly. Of course, He is angry. He is angry at Joubert Syndrome too.
Some people have a hard time believing that God can be simultaneously angry, good, and in control of all things. But for some reason, He's given me faith to believe that He indeed can. He's allowed me to believe that He didn't direct His anger at all of us who deserved it. He loved us while still sinners and instead, unleashed the ocean of His wrath onto His perfect Son. Jesus bore the guilt of all of our sins, and even the most horrifying ones we've heard of that I can't even dare to write on this blog, were put on Him.
Jesus bore my shame so I wouldn't have to. He felt the full force of God's anger so I wouldn't have to. And yet, for now, we still live in this fallen world. I think I've finally understood the "groaning" of creation that Romans 8:20-23 talks about. My heart used to and still longs for all I've wanted for myself in this life. But now, I've moved a little beyond that to longing for God to restore all things from the "bondage of corruption" to "glorious liberty." I yearn for Him to make all things new and for Him to take the seat of honor in ruling over all of creation with His glorious beauty, where there will be no more disease, no more death, no more tears, no more Joubert Syndrome, no more any syndrome. I know that even the sweetest things of life are only tainted knock-offs of the true joys of what is to come...how things should be.
Am I still angry? Yes. There is a refreshing release in being angry. Am I hopeful? You bet.
"...we ourselves groan within ourselves, eagerly waiting for the adoption, the redemption of our body. For we were saved in this hope, but hope that is seen is not hope; for why does one still hope for what he sees? But if we hope for what we do not see, we eagerly wait for it with perseverance."