My first email - telling the sad news

I was not a blogger back in 2002. Instead I sent out mass email updates to my friends and family (which ended up getting passed along all over the place. I got emails from people I didn't know. It was sweet). So here is the email I sent out to everyone letting them know about our ultrasound appointment when we found out that our baby had a fatal condition:

Sept 7, 2002
I think that most of you know that Shiloh and I are expecting our first child on January 19th. What a lot of you do not know yet is about the findings from our 20 week ultrasound (taken on Wednesday). The doctor discovered a large cleft in the lip, an atrial septal defect in the heart (basically a hole) and several holes in the abdomen area. The doctor knew right away that this was indicative of either Trisomy 13 or Trisomy 18, which are both fatal genetic syndromes. Last night we received the results from Wednesday's amniocentesis which confirmed that it is in fact Trisomy 13 (see www.trisomy.org if you want more details). Trisomy 13 is a rare problem (in my case - 1 in 7000-10000ish) that happens as soon as the sperm and egg unite and somehow there is an extra chromosome in the 13th pair. As far as we know, it does not look like something that is likely to happen again nor is there any risk to my health.

Most babies do not even make it to birth. Of the babies that are born, %90 percent die before age one. They are born with severe retardation and a myriad of physical problems. For Shiloh and I, abortion is not an option. We know that God will give us the strength to handle whatever he brings our way - if she dies in me or is stillborn or lives a short time. I believe that if she is really suffering God will take her to heaven. I have spoken with a women who had a Trisomy 13 baby (Samuel) that lived for two months. He was blind, had a feeding tube & was probably deaf. They resuscitated him 17 times (the babies often die because they just stop breathing). She said that they loved him and made him comfortable and they would not trade their time with him for the world. When he started being uncomfortable (his feet started swelling and they could tell his quality of life was declining), they did not resuscitate him and he died. If she (we found out the sex and we named her 'Faith') makes it that far, will we choose to resuscitate even once? I don't know. We will just take one day at a time.

Here is the good news:
1. Since the moment the Doctor started telling us the devastating news I have strongly felt the presence of God. In the last 6 months or so, He has been reminding me in many ways that HE IS IN CONTROL OF EVERYTHING. In Acts 17 the Bible says that he has determined the times set for us and even the places that we should live! In God we live and move and have our being. Up until now, I did not have a significant application of this because everything was going quite well. But now I know that he was preparing me for the uncertainty of what lies ahead. God knows how long Faith will make it and he will take care of her and Shiloh and I.

2. Philippians 4:6,7 read "Do not be anxious about anything but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
I have this peace that passes all understanding! I cannot even believe the peace that God has given me to face this situation. Don't get me wrong, this is a tragic situation and I have shed many tears. I also know that I will have moments and days where I will feel very down and perhaps even be angry with God. But for now I have an incredible sense of calm and peace that can only be from God and all the prayers of his people. So I really do appreciate the literally thousands of people that have already been praying for us. In addition, I actually feel honored (I know it sounds crazy) that God chose us out of 7000-10,000 people to be the ones to go through this. He knew that we could handle this and perhaps point others toward Him. He loves us. He knows us. He sustains us.

3. We have a wonderful support system. We went to our small group Bible Study on Wednesday night (the day we found out) and they completely shifted what we were doing to support us and lift us up in prayer. My family is devastated but have offered so much support. Although in Southern California, Shiloh's family have extended their prayers, love and concern. Shiloh's brother Caleb is driving up here as I write this just for the day to hang out with us. My Mom's friends have brought us dinners. Friends have offered to drop everything to do anything to help us.

4. Shiloh and I are closer than ever. I know that something like this can be very damaging to a marriage. In our case, we are clinging to one another.
Although we deal with it all differently, (I am researching and talking to a lot of people - Shiloh has only called a few people) we very much support each other - even in the way we are coping differently. Shiloh's faith is strong and he too knows that God is in charge.

Where do we go from here? We meet with the genetic counselor on Monday morning for further counseling. We will also talk to my regular OBGYN and see if I will go to a different doctor for high-risk pregnancies. We will also then find out how often I will go, etc.

Thank you so much for all your love, support & prayers. Know that God is working in us and giving us strength to endure.

"In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith - of greater worth than gold, which perishes even though refined by fire - may be proved genuine and may result in praise, glory and honor when Jesus Christ is revealed." I Peter 1:6-7