from darkness to hope

In the last post, I described how we learned about Grace's diagnosis of Spina Bifida and Hydrocephalus. I will continue on with that for a bit here.

When we got home from the dr.'s office we didn't speak a word. In fact, we both went straight to bed. It was the middle of the day. It was pouring down rain. It was miserable. WE were miserable.

We laid there. Neither of us speaking. Total silence except for the occasional gasping of air between quiet sobs. Then I spoke. Not to The Designer, but to God.

"Why, God? Why did you do this to my Princess? Why are you punishing me? Why her? What did I do that was so horrible that she deserves this; That we deserve this?"

Silence once again...no answers...just silence.

As I laid there, my hurt turned to anger. I was mad! I was mad at life. I was mad at God.

We laid there, both of us crying for a while. The Designer's sobs quieted and eventually his sobs turned into a rhythmic breathing pattern. He fell asleep. He looked so peaceful. For a fraction of a moment, when I saw him there sleeping, I felt like everything was going to be ok. But, a quick reality check snapped me out of that fairytale moment. I wished I could fall asleep.

Who was I kidding? I couldn't sleep. I wanted to! Oh man, did I want to. I was sure that if I could close my eyes and drift off, I would return to the world that I had known. The world that was not shattered. The world that I longed to have once again. But there was way too much on my mind for sleep. For one thing, up until this point I mistakenly believed that I had control of my life and suddenly (or so it seemed) I lost that control. I searched deep within myself to figure out how I could gain control once again. The one thing that I could do was arm myself with knowledge, so I quietly escaped the bedroom and headed to the office.

I turned on my computer and went straight to Google. I began to type in S-P-I-N-A B-I-F-I-D-A but I was hesitant to hit search. I was nervous about what I was going to see. I clicked the button and my search began. I found a wide array of information. Some from medical facilities, others from individuals impacted by the birth defect. I read, I cried, I read some more. I was scared to death to continue, but something came over me and I went on anyway.

I was in the middle of my search when I remembered that the dr. had given us print outs discussing our daughters condition. I gathered those papers and began to read. That is when I first read about a program calls MOMS (Management of Myelomeningocele Study). That was the piece of information I needed to hold out hope that our daughter could possibly be ok. I returned to my computer and searched this study. This is what I found: http://www.spinabifidamoms.com/english/index.html After reading for a few minutes I decided I needed to contact this study to proceed. If nothing else, they could give me more information. I was CRAVING information. It was almost an addiction. I called the number and left a message. A couple of hours later, we received a phone call back. I was encouraged. For a brief moment I had hope for a brighter future for my daughter.

The lady on the other end of the line told us about the program. She informed us that it was a clinical trial (study) and that they had to have a controlled group (those that do not have prenatal surgery) to compare to those that have the experimental surgery. She also informed us that it was totally random as to which group participants are involved in. We learned that there were a couple of site locations that participated in the study, but since we lived in Colorado at the time, we would be assigned to the University of California-San Francisco location. She gave us some statistics for babies and mothers of those that have the prenatal surgery. They were scary numbers. I don't recall the exact percentage, but it was relatively high for premature birth. The surgery must be performed before the 24th week of gestation and we were around 21 weeks when I made contact. That meant we didn't' have a lot of time to make a decision.

We decided it was time to let our families know what was happening. We had called them after our appointment with our regular OB to let them know they were having a granddaughter, but we didn't mention that we had to go to a perinatologist. We didn't' want them to worry.

My mom was strong for me. I cried as I told her my deepest, darkest fears. People will make fun of her. Her life will be so hard. She won't be able to live out her dreams, etc. She promised me everything was going to be okay, but I know that she was scared too. Deep down inside, she was disappointed. She was amazing though, and stayed strong for me.

We called The Designers parents. They were actually on their way out to visit us in Colorado. They were driving because we were planning to move back to Michigan a few months later, so they were pulling a trailer out to bring some of our stuff back home with them. In addition, The Designer was graduating from CU-Denver with his Master's degree and so both sets of his grandparents were on their way out too.

We called them. They were at a hotel in Nebraska when we reached them. They could tell there was something wrong. We informed them about our dr.'s appointment and what we knew. His mom is a nurse and understand all-to-well what this could mean. She cried. She couldn't talk to us anymore. We hung up.

No one ever said it, nor do I think they would ever admit it, but I felt like somehow we had let them all down. This was the first grand baby on both sides of the family. This child had been longed for by all of the grandparents for so long (we had been married 8 years before she was conceived). Now, their dream grandchild was on her way and she was going to be disabled. Yea, I am sure they were disappointed, but they hid it well.

The night of our dr.'s appointment we called our church to see if anyone was around for us to talk with. We honestly didn't care who it was, but we wanted someone to be there to help explain why God would do this to us. We called. Someone answered. We went. We told the associate pastor and the children's pastor all about what we had been experiencing. We asked them to show us scripture that would make us feel better. They really had no words to make us feel better, but after an hour or so of asking them very tough questions (as if they were responsible for explaining God to us!) we started to feel better a little. We left there with a bit more hope than we had arrived with.

On the following Monday The Designer and I decided to return to work. I am not sure what we were thinking except that we knew we could not just sit around and cry for the remainder of the pregnancy, so we decided to give it a try. It was much too soon. The Designer is an architect, so he was able to go in, realize he wasn't okay and leave. I, on the other hand, was a high school teacher and had to try to put on a face that everything was ok. I tried my first class of the morning and I failed. The rest of the day I stayed in the office, talking with my friends (my peers), crying and researching on their computers. At some point someone sent me home. I really shouldn't have been there. We both returned to work a couple of days later.

We proceeded with the steps to enroll in the MOMS study and the next couple of weeks were a whirlwind. However, as more time went by, more smiles crept into our days. The strangest thing happened....God was filling us with peace, hope, and even a small amount of joy was returning. God was showing His face and we were actually noticing. This was the beginning of our "real" change. The first time we learned how to completely put our trust in God. The first time I can honestly say we let God carry us when we couldn't carry ourselves. It was the beginning of a wonderful relationship that I am forever grateful to have!