A leap of faith

Last week I received a call from a genetic counselor at Kaiser. As was the case all along, there is currently not an answer that they can give us. It appears that the test for Pearson's syndrome was not done, although we had thought that it would be. The lab initially thought that the cells were not suitable for the test, and then they changed their mind and said that they were. Unfortunately, Claire had passed away by the time this decision was made. Now the problem is that Kaiser has a policy that genetic tests for deceased patients are not covered. Our geneticist is working hard on our behalf to have this policy changed for us and another family in a similar situation. He is hoping that he can have it resolved by the time we have our appointment with him and the counselor on June 5th.

Additionally, Jerre is going to be tested for carrying Cystic Fibrosis. Although I have tested negative as a carrier and Claire's newborn screening was also negative, there is still a small suspicion that Claire could have had a very rare type of CF mutation. It is probably unlikely, but they want to rule out any possibilities. If the results of these tests are negative, the only thing the geneticists can tell us is that there could be a 25% chance for possible future children. If Jerre and I both carry an unidentified recessive gene, then this would be our odds. A roll of the dice.

As you have seen, lately we have had some very positive things to keep us going. The walk for Preeclamsia felt really good to be able to do. Drew and Brittany along with their family and friends were incredibly welcoming to us, even changing their team name to include Claire. We were blown away.

We also planted "Claire and Julia's Garden" and are looking forward to having something to nurture and take care of over the summer. We will heal by watching it grow.

I also have been working on a number of projects for Claire. I finally ordered prints of the best pictures (218 in sum) and finished the video to be shown at our celebration in her honor. It was incredibly hard to start working on the video and I had to just do a little bit at a time in the beginning. I had to remind myself that I wasn't cutting footage of her forever, just for this particular video. Miraculously, I was able to make it 20 minutes in length, combining pictures, video, and music. The results tell the story of her brief life with beauty.

As we have worked through these last few weeks, never have we realized so clearly that there are no guarantees in life. All through the pregnancy, we were told that we had a healthy little girl. Until the last ultrasound done a week before she was born, we had no suspicion of any abnormalities. That final ultrasound revealed that Claire had shortened limbs, but we doubted that she had additional problems.

Every day when we wake up and walk out of our front door, we are taking a leap of faith, but it is one that we are often not aware of. We trust that everything will be okay today and, thankfully, it usually is. Life, however, operates on a knife's edge. It is a delicate, fragile being that hangs by a thread. We cannot always live as if it is our last day- sometimes we just have to have a hum-drum, going-through-the-motions type of day. It is worth pausing, though, to remember that this moment is precious. You are taking a breath; your heart is beating. If you're really lucky, the sun might even be shining.