Three weeks from today my little guy should finally be here.

So this is how it is supposed to go: Cody is scheduled to be delivered by c-section on January 19, 2010, at 9:30am. We will get to see him for a minute or two before the doctors take him to be evaluated. Sometime in the first 2-24 hours he will have 2 surgeries: the first to repair the defect and the second to place the shunt. Then he will be in the NICU for a week or so, while he recovers. We won’t be able to hold him while he is in the NICU, but he will be in an open-air bassinet, so we should be able to touch him. Visitors are welcome J  (as long as they are not sick). From there he will go to the Intermediate Care nursery, to work on eating on his own (without a gastric tube) and other issues. There are rooms in the Intermediate Care nursery where we will stay the last couple of nights for a “trial run.” We will take care of Cody in our room, as if we were at home, but still within easy reach of any help.

Then we will take him home. He will have to go home in a special car-seat in which he can lay down, as he will still not be ready to be placed on his back. From there we will begin physical therapy and dealing with strong possibility of shunt malfunctions and infections, especially in the first two months. In those cases the shunts will have to be replaced. Any time Cody has a fever, is lethargic or sleeping more than usual or more irritable than usual he will have to go the hospital so that they can evaluate his shunt. And all this is just the first 8 weeks of his life. Whew – so much to think about, and so nearly impossible to keep from thinking about it!

I haven’t posted in quite a while, not because I have been too busy or lazy, or because I have forgotten, but because things have just been too difficult for me to want to write. The last few months have been a dark place. The anticipation of what is coming has been torturous, and I’ve never been good at controlling my thoughts, or at “positive thinking.” I have not been anticipating the worst, just anticipating. I can’t wait to see my little one, but I am still grieving the lack of “normalcy” that this birth experience will involve. Meanwhile, my self-imposed bubble of ignorance about what parenting a child with spina bifida will entail has been slowly disintegrating. The bubble was a good thing – why would I want to be inundated with overwhelming information about which I can do nothing? But as the time has approached to start educating myself on what the first bit of life with Cody will be like, I have been completely overwhelmed. 

A couple of days ago we had our 4^th ultrasound. The news is not good. Cody’s hydrocephalus has become quite sever in the last few weeks. What doctors like to see in measuring the size of the ventricles is a width of 10-12 mm. Cody’s ventricles have gone from 14.5 mm at our first ultrasound, to 39 mm. This means that a shunt will need to be placed immediately after he is born. It also means an increased risk of brain damage. There isn’t any direct correlation between ventricle size and amount of damage to the brain, but when the ventricles measure over 15 mm, the chance of damage presents itself. In some cases it is severe brain damage. We won’t have any idea how much damage there might be until he is older and meeting or missing milestones. This frightens me more than any physical damage could do. I want my child to be here, to be present. To be able to smile and snuggle and talk and play, like my other children. I don’t know what I will do if that is not the case. The idea simply brings me to my knees. And please don’t post any truisms about one’s knees being the best place to be because that is when we are forced to trust God. That might be true, but I don’t want to hear about it. What I mean is that the thought devastates me.

With the coming of Christmas season I have been thinking a lot about Mary. I mean this in the most humble way possible, but I think I may know a little bit about how she felt in anticipating Jesus’ birth. It must have been very frightening to be travelling so far from home when 8-9 months pregnant with her first child. She would have had no idea when and where that baby would come, and if there would be help available to her if she needed it. I have been on partial bed-rest for several weeks now because of pre-term contractions, so I have some idea of what that daily uncertainty is like. And travelling on a donkey! Any woman who has been pregnant can imagine the agonizing discomfort that would have caused. On top of this, the knowledge that everyone knew she was pregnant before she married, and the stigma associated with this.

And then there was both the knowledge and the lack of knowledge about what Jesus’ future held. She knew that she was carrying the Messiah, and must have had some hint from prophecy of how his life would go. This would be overwhelming in itself. But how could she know what the day-to-day challenges would be in raising God’s Chosen One – His Son? Unless she was a much stronger woman than me, she must have struggled with a great deal of anxiety. And yet, what choice did she have but to believe in the words of the angel, that she was “highly favored,” that God had chosen her for this task?

I think a lot of my struggle in the last few months, and the cause of my wavering faith and feelings of despair, have come from a mistake in what I am trusting in. I have been trusting in my beliefs about Jesus, instead of trusting in Jesus Himself. When I try to fit this situation into the framework of what I believe about how Jesus uses and orchestrates our circumstances, I get a bleak view of life, and one that, really, if I look at it logically cannot be explained away. Hence my inability to “think positive.” When I pick my beliefs apart with logic, the conclusion I come to is a pretty infallible argument for the meaninglessness of suffering. 

But when I just believe in Jesus, with blind faith (that’s right, I said blind faith. What else can one have when the future is a complete, uncontrollable and frightening unknown?), then hope comes. Without which hope life is unbearable. I can’t explain why, but I know that it is true:

“Turn your eyes upon Jesus,

Look full in His wonderful face,

And the things of earth will grow strangely dim,

In the light of His glory and grace.”

  

I mentioned in an earlier post that we have a lot to be thankful for already:

Andrew is in medical school, which means that he understands a lot of what is going on, and is on the inside at the hospital. He can interpret a lot for me, and this is so reassuring.

Andrew's rotations have somehow been less demanding than usual. The residents and doctors he is working with have been very understanding about letting him leave when something is going on. One day we had appointments scheduled for the whole morning, and Andrew was in his surgical rotation, which is the most demanding of all. He was planning to come to our appointments anyway, but he didn't even have to ask for the time off - a surgical conference was in town, and he had the day off!

Andrew had already been through his pediatric and obstetrical rotations when we found out about Cody's diagnosis, which means that he has already worked with most of the doctors we are dealing with. The doctor that interprets our ultrasounds every month was actually Andrew's preceptor (sort of a mentor/boss) during his OB rotation. I don't know what kind of care other people get, but I can tell you that our care has been excellent so far. We have even had a doctor stay late after work to meet with us and answer our questions.

I have already had two c-sections. This might not seems like such a blessing, but since this one would have to be a c-section anyway, it means one less scary unknown. C-sections aren't fun, but at least I know what to expect. And, again, Andrew's knowledge this time around has helped to explain some parts of the procedure that were particularly scary.

Living about a two-minute drive from UVA, the best of everything is right at our doorstep. This especially includes the spina bifida clinic, where all the resources are in one location. A lot of people would have to drive for hours to get to one.

We have extremely supportive family, who are willing to drop everything to be here when we need them, for as long as we need them. 

Because Andrew is in med-school and I stay at home, the boys and I are on medicaid. This means that every single medical need that any of us has is covered. All of Cody's surgeries and care will be covered with no co-payments at all. What an unimaginable relief! I watch enough TV to know that not everyone can just sit back and relax about medical payments.

I have always been a pretty negative thinker, but somehow with this (on most days), I can see the positive. That in itself is something to be so thankful for - there is no way I could just change my personality and see things differently through self-effort. I know, because I have tried. I only know one Person who could make a change like that in me.

Lest I start to sound too perfect . . . I am having a really sucky day today. I have a terrible headache, and I am completely peopled-out.

I had to take the boys to the doctor today for flu shots and Austin's three-year-old check-up. Turns out that Austin has to have surgery to repair his herniated belly-button. Lots of kids are born with them (Jack was), and they usually heal up on their own, but Austin's didn't. It is really a no-big-deal, non-invasive surgery - possibly even outpatient, but still. Seriously, life? Seriously? The poor kid has already had rabies treatments this year, not to mention everything else that is going on. I really don't feel as sorry for myself as I sound - I know things could be so much worse. But I am not coping real well with anything today.

Jack and Austin's school pictures were yesterday, and I didn't find out till today that you have to pay for them ahead of time in order for any pictures to actually be taken. So Austin will have no school picture for his first year of school. Really stupid thing to be upset about, but I cried all the way to Lowes after I dropped them off. Jack's first school picture is so precious, I hate that Austin won't have one.

All of this is the worst thing about our situation for me right now. Having to wait 4 months between finding out about Cody's diagnosis and actually dealing with it. The day-to-day stuff is just unbearable sometimes. I have this huge thing looming in front of me, and I have to deal with tantrums and poop and picky eaters and nightmares and permission slips and dishes and headaches . . . . It sucks sometimes.

To top it all off, pregnancy seems to have inflamed my carpal/cubital tunnel syndrome till it is worse than its ever been, and I can't knit at all. I almost can't even cut my food or wring out a dishtowel. So, I have no outlet or interest to give me a little bit of fun and a feeling of accomplishment. I didn't knit last week, and it didn't help at all. I feel like a zombie.

A sweet friend of mine, who is due with a baby boy just a few weeks after Cody is due, asked me if I mind her talking about her baby. I don't mind. I don't feel badly about Cody's diagnosis. I am sad about it sometimes, and I get really scared and anxious about some of the details sometimes, but I don't feel disappointed or like I am getting gypped. I couldn't love this baby more if I could somehow know he would be the perfect child. I can't wait to see him and meet him! As my husband said today, this is right. This isn't some kind of mistake - this is the gift God has given us. A few years ago I think I would have seen Cody's condition as a form of discipline - something to make me "better" or more "righteous," or as some kind of test. But now I see it as a gift of pure love. He is a little boy - not a trial. Yeah, I might not always feel this way - I'm sure I will be angry sometimes, and overwhelmed with the responsibility. But thank goodness how I feel doesn't dictate reality. I have perfect peace about it, and that passes all my understanding.

We had another ultrasound today, and a consultation with the neurosurgeon. There isn't really anything new to report. Cody is growing well - 1lb, 9oz, in the 50th percentile. The lesion is right where they thought it was, and the hydrocephalis hasn't increased. Now it is just monthly ultrasounds until time for the c-section.

P.S. on the latex thing: whatever causes the allergy in latex is also found in tropical fruits: bananas, papaya, passion fruit, mango, kiwi . . . . If this kid ever goes to visit his grandparents in Trinidad, he may have to go in a bubble! There is so much to learn - we have a book about spina bifida, but every time I open it I get freak out and have to close it. I guess there is plenty of time to learn most of it.

Meanwhile, I am already sick of even saying, "spina bifida." I think I have spent way too much time on the phone explaining things in the last week.

We have had to make a major decision this week whether to participate in an experimental study on spina bifiida babies. If we participate in the study, and are accepted into the group that we would want to be in, I would be having major surgery within the next three weeks. The study is looking to find out whether it is beneficial to take the baby out of the womb during pregnancy, repair the covering of the spine, and put the baby back in. I would have this surgery, and then have to live on-site in either Philadelphia, Nashville or San Francisco, on bed rest, for the remainder of the pregnancy. Their is a higher incidence of mortality to the infant, and an extremely high incidence of premature birth. My mom would have to come live with me, while Andrew stayed home with the boys. He would have to either drop out of med school for the time, or have his mom come live with him.

We decided it isn't worth the risk. I am so relieved. I would have missed Jack's birthday and Christmas, and the whole thing just seemed crazy. Not to mention not being with my husband for most of the time. Cody's prognosis is so much better than we thought at first, and we are receiving such excellent care here, it seems clear that God has us right where He wants us.

I have been thinking a lot about latex today. Most people with spina bifida are allergic to it (the doctors have no idea why), and some are severely allergic. Many babies used to die on the operating table because of the allergy. What has latex in it? I have no idea. I know that some diapers do, and catheters (which we will likely be using plenty of), pacifiers, bottle nipples, balloons . . . . I have not even cracked open the huge folder of papers they gave us at the spina bidifa clinic. There is so much new information, it is really overwhelming.

My unborn son, Cody, was diagnosed with spina bifida this week. Spina bifida is an open cord defect in which some portion of the covering over the spinal cord (bone, muscle and skin) has not formed completely, and the nerves of the spinal cord are exposed, causing a wide variety of problems.  In Cody's case the exposed portion is is very low, in the upper sacral area or the lower lumbar. This is good - the less nerve exposure, the less systems effected. The prognosis as far as our doctors can determine is that Cody will have some ability to walk using a walker or ankle braces, that he will have little control over his urinary and bowel functions, and little sensation from the waist down. Spina bifida also causes the spinal cord to be fused to the tailbone, causing it to pull down on the brain as he grows. His cerebellum has already herniated some into his spinal column. This causes a condition called hydrocephalus, in which pockets of fluid around the brain, called ventricles, are unable to drain, and become enlarged, putting excess pressure on the brain. Cody will have to have surgery within 24 hours of his birth to close his spinal lesion, and possibly to place a shunt from his brain to his stomach in order to drain the fluid. He may have to have other surgeries throughout his life. 

I am starting this blog to help keep informed the many, many people who are concerned about Cody's condition, and to record our progress throughout the pregnancy and into Cody's life. Cody's life will not be just about spina bifida, however, so I am expecting this blog to grow into so much more . . . .

Some may wonder why I have titled this blog "The Kindness of God," considering the events that are happening to us right now. Certainly, Cody's condition and the challenges we face don't feel much like a kindness. But God's kindness to us has already, in 6 short days, been very evident. I am sure I will explain more about that later, but for now, I want to tell you about the story of a "handicapped" boy that I have not been able to forget.

Mephibosheth was the grandson of King Saul, in the Bible. He was expected to be a king. But because of his disobedience to God, King Saul was deposed, and King David set up in his place. When Saul was deposed all of his family fled from Jerusalem and went into hiding, expecting the new king to hunt them down and take their lives. In the chaos, Mephibosheth, just a small boy, was dropped by his nurse, and became crippled for life. It was not until many years later that King David even knew that Mephibosheth existed.

After David had secured his reign, he asked his servant, " 'Is there no one still left of the house of Saul to whom I can show God's kindness?' Ziba answered, 'There is still a son of Jonathan [Saul's son and David's best friend]; he is crippled in both feet." 2 Samuel 9:3. David went on to find Mephibosheth and bring him before him. How terrified Mephibosheth must have been - he must have thought that the vengance deserved by his grandfather was to be brought down on his head at last. Instead, David restored to him all the lands that had belonged to his family, and commanded that Mephibosheth, the cripple and the outcast, would eat with David at his table for the rest of his life.

"I can see those little crippled feet swinging under the table with disbelief and delight while their owner incredulously sang, 'Amazing love, how can it be that You, my King, would honor me? It's my joy to honor You!" (Paul Anderson-Walsh, Until Christ is Formed)

My little boy may look different from those around him. But he is no different. We are all born crippled and broken, missing essential pieces to make our lives satisfying and effective. And life, as we go along, deals many a blow that breaks us more. But Jesus, who loves the outcast, the crippled, the blind, the weak, the poor, says,"Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28. It is not the whole and proud and strong that He wants. It is the outcast that He loves.

Some will say to me that if I had enough faith, God would heal my son. He never once promised me that. But He did give His own Son, Jesus, to suffer all of the agony that Cody may suffer, so that I can see my little boy sitting at His table, perfect in every way, knowing that he is loved and wanted by the King. That is His kindness to me.