With every newborn child of ours, I’ve loved studying their face, while holding them in my lap.
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| Vivien yesterday. Feeling better! |
While I see some resemblance of Molly or I in her face, I also admit that the Trisomy 18 has created its own characteristics. From her webbed toes to her persistently-clenched fists, there are some physical aspects that would not be there had she not had the extra chromosome. The impact of her syndrome will continue all her days, since every single cell of hers has been given a “broken” set of blueprints.
In those times of holding and studying her, I can’t help but wonder how she would be without the syndrome. I can only explain it as “parting the curtain” of her syndrome to see who Vivien really is. I believe this is the Vivien who will run, dance and sing in heaven without being bound by the disease of genetic error.
I have a good friend, Seth Esvelt (link) who was in a near-fatal car wreck 11 years ago. Before the accident, Seth was a vibrant, smart, athletic man who had a zeal for life. But his traumatic brain injury has left him in a persistent vegetative state. The trauma of not enough oxygen to his brain caused the curtain to be closed in front of the real Seth. It’s hard to see the Seth we all remember, through the curtain. Occasionally, you get a glimpse of the real Seth showing through, but the curtain dominates the majority of the time.
In a greater sense, there is a curtain that covers the true people we were each created to be. This curtain of sin has been put in front of us all and keeps us from living the lives we were intended to live. It’s the result of being born in a broken world. For Vivien and Seth, their curtain has manifested itself with physical limitations. But it can take form differently in each of our lives. We may have curtains of shame, guilt, fear and countless other issues that continue to infect us. Without the redeeming power of Jesus, we are permanently bound behind these curtains of sin – and we suffer from them daily. Unfortunately, we’ve gotten so used to each others' curtains, that we fail to see one another as we were truly created to be (but that’s a whole other topic).
On that dark afternoon when Jesus shrieked out his last breath, we are told that the curtain of the temple was torn from top to bottom (Matthew 27:51, Mark 15:38). This curtain was a physical division between the Holy Place and the Most Holy Place within the temple. It represented a division, a boundary, by which certain men could not go. The ark of the covenant, representing the presence of God rested behind the curtain, but was inaccessible to those on the other side. The tearing of that curtain was a physical demonstration that no longer would we be kept from coming into His presence. Our sin was put on Jesus and He received the just punishment for it. His death gave us life. Because of Jesus we can now know God intimately, in ways we were never able to before (Hebrews 4:16).
While the tearing of the temple curtain represents our ability to approach God, there are still aspects of our broken world that, for the time, dominate our lives. There is a tension between the “already/not yet” effects of redemption. But one day, all things will be redeemed. Revelation 21 says: “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, nether shall there be mourning, nor crying, nor pain anymore, for the former things have passed away” (v. 3-4).
When we were first told of Vivien's diagnosis, I read If God is Good by Randy Alcorn. It was a huge help in sorting out questions and frustrations I wrestled with. After reading it, I wrote an email of appreciation to Randy. I was quite surprised to get this reply from him:
"Oh, Todd, my heart breaks with you and yet I also rejoice with you. I am deeply moved to hear you say, "I am truly filled with joy every time I see her." That's as it should be. I know she and you are in the hands of our God of sovereign grace. Please greet your wife warmly from me. God is with you, and will be. I look forward to meeting your daughter one day in a far better world.
In the grace of Jesus,
Randy Alcorn"
One day the curtain of Trisomy 18 will be torn away and my little girl will be free to dance and sing in ways she may not here on earth. One day the curtain that keeps Seth bound in a broken body will be torn and he will be the life-filled man God created him to be. One day all those who have given Him their lives will be free from our curtain of shame, guilt, fear and all the other maladies that keep us from living the life we were created for. Until then, we live with hope. Our hope rests not in ourselves, but in the redeeming power of Jesus’ death on the cross – and his triumphant conquering of death.
Prayer Requests and a Vivien Update – by Molly
Vivien is doing so much better and we are hoping to go home in the next few days. The doctors say that this is likely. Her CRP percentages (which help measure infection) are very low; she has no fever, and is tolerating a small amount of breast milk along with intravenous feeding. We are hoping to transition to all breast milk in the next week or so, possibly at home. We are also learning to use a pump for her feedings, so that she can have some that are continuous. This is easier on her stomach. The intravenous feedings also mean that she might still have her PICC line in at home for a short time. I am so grateful for Todd’s medical training. He continues to have time off to help care for her thanks to his generous colleagues at work who donated some of their sick leave to him.
I love seeing Vivien back to her normal self. She doesn’t seem like she is in any pain, she has some occasional long periods of wake time and is very content. The only concern the doctors have is that her White Blood Cell count is still pretty high. This is strange, because her WBC count was actually low when she had the infection and has gone up as she’s gotten better. It is normal for it to go down as the infection does. This is a bit puzzling, but because she is presenting well and the infection seems to be gone, the doctors are not terribly concerned. We will keep an eye on it.
Lastly, our kids have all come down with low grade fevers and sore throats / colds. This is not great timing. I am home with them now and Todd is at the hospital. We have been switching back and forth but I may stay with them for the next couple of days.
So please pray that:
1. The children’s colds would be healed and that Todd and I will stay healthy as well.
2.Vivien’s white blood cell count would go down.
3. If she comes home with PICC line in, we would care for it well and learn how to use the pump without error as we come home.
4. Her transition home would be smooth, we would learn her “normal” and have God’s wisdom to catch anything that goes wrong and that she would stay healthy.
5. Freedom from anxiety and striving. I am grateful that I am feeling more peace.
1 comment:
Todd and Molly. This writing is so wonderful. I'm praying for your precious one. You are both very encouraging.
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