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.   

A Life not Lived

Friday morning I had to go to my postpartum appointment- with no baby. As I sat and waited for the nurse to call me, a beautiful newborn joined me in the waiting area. She was held by her grandma while her mom looked on. I smiled at them. She had brown hair like Claire. It was a painful 10 minutes until they were called. As she left, her grandma told me that she was 11 days old.

Saturday was my due date.

Today I made the unfortunate decision to take Julia to OMSI. I didn't think about it beforehand. There were babies and women expecting their second children everywhere. As we came out of the bathroom, a grandma said to her baby grandchild, "C'mon, Claire, it's our turn." It was too much.

Not only do we mourn for Claire, but we also mourn for the life we thought we were going to live. As a good friend put it, you just think that things are going to all work out and that tragedy of this magnitude only happens to other people. Julia having a little sister with just the right age spread between them, taking two little ones to the spash parks in the summer, and the thousands of other things we had envisioned... the baby clothes and blankets that are still freshly washed and folded waiting to be worn.

I have learned that a death of this significance makes some feel awkward and uncomfortable. Believe me, it is so much more painful to not say anything than to "remind me" of what has happened. It is impossible to remind me because it is always on my mind. Yes, it is true: there are no words that can make it all go away or that will miraculously heal all of my wounds. However, there are words of compassion and caring that are so important to hear and they sound like this: "I'm so sorry. How are you doing today? Do you want to talk about it?" That's all. To ignore makes it impossible to breath for the elephant in the room.

After coming home from OMSI, I checked my school email absentmindedly and found this:

This is one of my classes that wanted to all send their love. Such a gift on such a day.

I continue to be held up by the love of compassionate family and friends who I am privileged to be surrounded by. Today Julia said, "You're strong, Mommy. You have a lot of muscles in you. You have muscles in your elbows." Well, if I have muscles in my elbows then I think I am strong enough to survive.