Everything is Out of Order This Month

But I'm posting what I feel like when I feel like it . . . here are some more photos, this time from our Japan trip. Remember that Friday 15 October was Pregnancy and Infant Loss Remembrance Day? Well, on Friday 15 October we -- me, J, Grandma, Grandpa, Geg, Local Hero, Local Heroine, A, M, and Local Heroine's parents -- were all at the shrine where Local Hero and Local Heroine were going to get married. They had a wedding run-through and had to go over some paperwork and review plans etc.
While we were walking around the grounds, we happened upon this area here. I noticed the stuffed animals and bottles of milk and formula on a shelf and asked Local Heroine what it was about. Turns out it was a prayer area for babies who have died, and you could pay 100 yen and light a candle and burn some incense and pray for their souls to go on up to heaven (or wherever). So we lit a candle, burnt some incense, and all stood and prayed for baby Alex and Surf and Cali and Little T.

Pregnancy and Infant Loss Remembrance Day

I copied this from Cali's Facebook status:

October 15th is Pregnancy and Infant Loss Remembrance Day across the world. Please take part in the global 'Wave of Light'. Simply light a candle at 7pm and leave it burning for at least 1 hour to join us in remembering all babies that have died during pregnancy, at, during or after birth.

23 Days

It's hard to believe it has been just over three weeks since Alex died. I think of him every day. I feel so honored to have gotten to meet him, to look at his beautiful face and witness the coming into the world of a new soul. It reminded me just how deeply important birth and life and death are. Even though I went into the experience knowing that he was going to die at some point and that his life would likely be very short, I wasn't prepared for it to be as heartbreakingly sad as it was, nor did I know how witnessing death--for the first time--was going to be. Holding Alex after he died was one of the most profound moments of my entire life.

I've never experienced death up close and personal like this--three of my grandparents are dead, but one grandfather died when I was only two months old; the other died at a distance and I was unable to travel for his funeral (although now I wish I had been able to make the effort); and one grandmother died after a two-week-long decline during which I was able to visit with her, say my goodbyes and prepare, but I left before she actually did die.
The emotion of standing there around Cali's hospital bed while she held Alex can't be put into words. All of us stood around the bed praying over Alex and crying and crying. I couldn't stand it, it was so sad. I wanted to reach into-- I don't even know where-- and pull Alex back and have him with us again. There isn't anything that makes this feel less sad or better: I'm thankful that he's in a better place, I'm thankful that he didn't suffer while he was with us, but it just seems so wrong for him not to be here with us.

One of my favorite pictures of Alex

There is so much to say about the experience of meeting this sweet boy. He had the most beautiful, perfect, heart-shaped lips, and here he is making one of my absolute favorite baby expressions: the perfect o-shaped mouth. Love him.

Love and Family

Sweet Baby

Alexander Francis

Alexander Francis
born 03 September 2010, 8:04 p.m.
4 lbs 6 oz
17 inches

He changed our lives forever, and we miss him dearly.

Baby Alex

is being induced tomorrow. Please keep Surf and Cali in your prayers.

We're Expecting a New Nephew

I've been waiting to announce this for ages and have finally gotten permission to share with everyone! In January Surf and Cali announced that they were expecting a new baby in September. In May they had their 20-week ultrasound and found out that they're having a little boy.

They also found out that he has a rare condition called Edwards Syndrome, or Trisomy 18. Trisomy 18 is a chromosomal disorder where the baby has a third 18th chromosome instead of the usual pair of chromosomes. (Down Syndrome, or Trisomy 21, is the most common trisomy.) Unfortunately, unlike Down Syndrome babies, babies with Edwards Syndrome tend to have very short lifespans: 90 percent of babies born with trisomy 18 or 13 die by age 1.

It has been a difficult journey for Surf and Cali the last few months, and there is a lot of uncertainty ahead for our little nephew. They don't know if he will make it to term, how long he will live once born, or what kind of issues he will have once he arrives.

We are looking forward to welcoming Alexander Francis to our family, and I am making plans to fly out to California for his birth over Labor Day weekend--I can't wait to meet him.

I've spent a bit of time reading about Trisomy 18 as well as other stories of babies with fatal prenatal diagnoses since finding out this news. What follows are a number of links that I've found helpful in processing all of this:

Sites about babies with Trisomy 18:

• Prenatal Partners for Life: Trisomy 18 Stories
• Trisomy 18 Foundation (click on "Get Support" and choose "Legacy Pages" from the drop-down menu. Within this page, click on "View Pages" and then "View All Pages"--this will bring up a list of Legacy Pages created by parents of Trisomy 18 babies)
• 99 Balloons: Eliot Hartman Mooney (this link takes you to an amazingly touching YouTube video)
• Reagan-Hope and Love (Reagan died shortly after she was born on May 4 and her parents are still chronicling their experience)
• Nolan's Miracle of Life (Nolan celebrated his first birthday on June 25!)

I've also been reading incredibly touching and heartbreaking stories written by other parents who have experienced a fatal prenatal diagnosis. These are three of the most powerfully-written ones:

• Bring the Rain: Audrey Caroline (they also have a book, called I Will Carry You, about their experience. I haven't read it, but Cali has).
• Finding My Feet: Evie Grace (scroll all the way to the bottom to read the posts in order, backwards)
• Embracing Elijah
• You may also find it helpful to read this link (I know I did) written by a father who lost his baby son at birth.

ETA: If you want to read more posts about my nephew Alex, or see some pictures of him, click on the "Alex" tag below to pull up all my Alex-related posts.