Monday, July 31, 2006

One of My Favorite Words: Honesty

There were two things in the paper this morning that struck a chord with me today, and they both have to do with Honesty.

One was an article in Dear Abby, where a woman had gotten something returned to her when she had taken some boxes for recycling and left something in it. Another was a Thought of The Day that I always read in the News every morning, it is from EV Lucas, an English author and critic (1868-1938).

"The art of life is to show your hand. There is no diplomacy like candor. You may lose by it now and then, but it will be a loss well gained if you do. Nothing is so boring as having to keep up a deception."

Boy, if anyone knows me they know me to be FULL of candor. I've always prided myself on telling the truth as I see it. It's what made me a good and a bad journalist at the same time -- in that sometimes even your editors don't want to hear the truth, but the trait is an honorable one I think. Even at the risk of losing a job or a friend, I'd much rather be known for being honest, rather than be known for deception and therefore be untrustworthy.

And the first thing -- the Dear Abby article -- made me think of our first trip to London a few years ago when Brian and I went to Europe. We had just gotten off the plane the morning before, and that evening had tickets to ride The London Eye across the river from Big Ben, Parliament, and Westminster Abbey. I stopped to buy some postcards, which were 6 for $1 British Pound, and I gave the lady a $10 pound note. As I was counting my change (mostly out of curiousity since I got a bunch of neat coins back), I realized she had given me all $10 pounds back.

I said "I think I got the wrong change back," and the lady thought I was accusing her of not giving me enough, but quickly I said "No, I mean to say you gave me too much change back."

I'll never forget the look on her face as I handed her a $1 pound coin back, and those words in a heavy Cockney accent. "Well look at that," she said. "An honest LIE-DAY".

I know I'm not perfect at this -- but I wish more people saw the value of honesty, and would not just do it themselves but teach it to their children. I think most people would find that it feels good to give that change back or to speak the truth.

And sometimes just being honest gets you a good memory from London.

I Dreamed About Jacob Last Night

I was supposed to get up and start walking this morning. That was my plan anyway, but I woke up at 6:30 this morning, and was still tired, not to mention uninspired to get out of my house, so I went back to sleep.

In the hour more of sleep I got, I had a dream about Jacob.

He was in his blanket, he was home with me, and even though I knew I didn't have much time with him, he was alive. He was still very tiny just like he was when he was born, but his eyes opened, and I just gazed into them.

Jacob then talked to me. And what he said was somewhat funny.

He told me he was fine, but what he really needed was a diaper change and something to eat.

So, I picked him up and moved him to the bedroom's changing table (one I don't have, but we were in "his" room), and I changed his diaper. I looked into his face some more and saw that he was asleep again, so I just held him some more before I woke up from the dream.

Last night before I went to bed, I had started thinking about Jacob and how much I missed him. I can't tell you how much it meant to me this morning to wake up knowing I'd seen him again.

Thank you Jacob. We're doing ok.

Sunday, July 30, 2006

Pillow To Pew in 30 Minutes

Brian and I try to get to church every Sunday, but lately it's been closer to every other week.

Our first week back after Jacob was two weeks ago, and last Sunday we had company from out of town, so I was up late talking, so we didn't get up in time for the 8 a.m. service that we like.

I've never been a fan of the 10:45 service. Partly because it's the service with everyone who has kids, and crying babies are NOT what I need to hear right now.

So, the 8 a.m. it is. This morning, my alarm went off at 7:00, 7:09, and 7:18. By 7:27, still cuddling and feeling like I REALLY wanted to just stay right where I was, I pulled myself out of bed and said "We can make it."

In 15 minutes, we had clothes on, teeth brushed, hair done, and a second to throw on some mascara for me and a tie for Brian.

With coffee poured into our commuter mugs, we made it out the door.

This morning Bob, one of our church friends, said "It's good to see you here," and I joked that we'd made it to church in some kind of record time, even with a cup of coffee. But then Brian said "Yeah, it's a new record for Julie. Pillow to pew in 30 minutes."

I'm so glad we're Lutherans, because all Bob did was laugh and say (with all due seriousness), "That's impressive."

And like good Lutherans, it immediately moved to what kind of coffee maker we have (one with an alarm that brews before you get up), and how getting that all-important cup of coffee in before church is key.

Friday, July 28, 2006

It's Been 3 Weeks Today...

Boy, today got rough. Again.

I've worked on a quilt, and that felt good.

But I realized today it's been 3 weeks -- THREE WEEKS, since I had Jacob and lost him.

What is it about grief that makes you feel like you've lived FOREVER but a part of you feels like it was just YESTERDAY?

A sister-in-law sent me an e-mail a few days ago about the loss of her husband, and the resulting grief that followed, along with a story about the "prayer blanket" that she had sent me at Christmas.

In my resulting response today, I told her about how our griefs compared -- just that we shared that first experience of having to tell ourselves to breathe some days. Then I told her about the dream I had of Jacob. By the time I got done with that e-mail, the first tears of many flowed.

Then Brian came home and we talked a short time. He's going to a friend's house tonight, and as much as I wanted him home, I also wanted him to see the friend who's coming in from out of town who he doesn't get to see very often. He really needs time with that buddy of his because I think he's one of the few he can really talk to.

So I went to the fabric store after Brian left, and bought some more material so I can hopefully make quilts a couple more of these quilts.

By the time I was driving home, the song "I Hope You Dance" by LeAnn Womack came on the radio, and I was in tears. I had listened to that song so many times during my pregnancy with the expectation that I could hold my baby some day and sing that song to him.

Instead, the song is now only for me. And I have to find a way to dance again.

Thursday, July 27, 2006

Jacob's Ladder For My Mom

One of the beauties of the fact that my Mom doesn't read my blog much, if at all, is that I can post this here.

A couple of days ago, I got a bright idea: That I would spend some of my remaining time off making a quilt for my Mom.

This design is called "Jacob's Ladder".

I plan on making more than one quilt in this design -- my original idea was to make one for Brian and me, but then I got the bright idea to make a smaller one for my Mom first.

Her tremendous support for me during our loss is so deeply appreciated. She and my sister both came to town and stayed with us. Mom stayed here for nearly 2 weeks, cried with me sometimes, and sometimes just sat with me.

I feel so blessed to have a Mom who is not only my "Mommy" to dry my tears, but she is also a friend -- and since this happened, it brought us even closer together.

I have spent the last couple of days working very hard on this quilt for Mom, and it's proving to be easier in some respects that I thought it would be, but a challenge in others.

Whenever you make a quilt in high-contrast colors, the edges have to be perfect, or it shows. As I've worked on this, I've realized how good it feels to be sewing again, to use my creativity, and do something I love so much for someone so incredibly special.

Thanks, Mom. I love you.

Tuesday, July 25, 2006

The Continued Adventures of The Green Torpedo

I just fired up my green Subaru Outback, aka The Green Torpedo, to take it to the fabric store. Now that I know I'll only be off for a couple more weeks, I thought I'd go get the materials I needed to make some pillows for my couch.

Well, most of the way there, my car acted like it was going to die. The radio went out, some dash lights came on, and the tach died. I had to hit the gas to keep the engine running, while sitting at a stop light.

So, I turned around in the parking lot and pointed The Green Torpedo towards Casman's Automotive 20 blocks away. It's 95* or something, and I had to shut off the A/C to keep it moving, but we made it.

The guy is so nice...My battery "pancaked" he said (died), and he's charging it up and checking the alternator for me. My DH works for a company that builds starters and alternators, so I can get one for free, and Chuck The Mechanic said he'd install it for free if that was a problem.

SO, they drove me home, and I'm back in my house with nothing to do but blog this.

Hopefully the Spawn of Satan car will start working again soon. Nothing like spending $1,400 on repairs last week and having it in worse shape than it was before!

I AM getting a laugh out of this though. I feel like everything I touch right now is falling apart, and I just feel like yelling at the gods and saying "I BET YOU THINK YOU'RE REALLY FUNNY!!!!"

Monday, July 24, 2006

I'm Just Full of Ideas...

I'm not sure exactly why, but it's just hit me that I'm literally FULL of ideas lately. I can't say they're all good ones, but I am thinking a lot lately. I think a lot about almost everything people say to me, say about me, or just say in general.

Recently, I came across a friend who said he was offended by people who express their political opinions, because they'd driven to their house with a car full of bumper stickers that showed an opinion that's different from their own.

I wondered -- almost out loud -- but I'll take the risk that it's seen here: Does it ever cross their mind that just because someone doesn't agree with them, does that make them wrong?

And why do they take it so personally?

There has been plenty of thinking time for me lately, and it's not just about my recent loss. I've been handed the time to truly think about my belief system, as well as considering others'. I'm sensitive to not only my own thoughts, but what goes through the minds of those around me who don't hold my views. I consider their thoughts and respect them, even if they aren't the same as mine.

Pardon me if I appear to be sitting on my high horse, but all too often lately, I feel people take personal offense, just because someone else dains to hold an opinion that's different from their own.

Take for example, the rather partisan views of our nation today.

I was at a party not too long ago where a new resident of our country was invited. A rather far-to-one-side of the spectrum person (no, I won't bother telling you left or right) was asking him about whether he was politically right or left, and none too gracefully either.

But this friend was from Europe, where many countries have as many as 26 political parties -- a mix of left, right, centerist (oh, how I wish we could all be more centered). This woman was pointedly trying to drive this poor friend to state his politics as being one way or the other (as if there were only two), when I interjected and said gently that our friend was from one such country that wasn't nearly as divided as ours.

My new European friend, not knowing which way I lean politically, showed me his thankfulness for my insight with a mere glance of thanks.

Many people who know me know me to be a mainstream Democrat type, but they don't understand that there are many issues on which I maintain a centerist, and sometimes even a right-wing view. I don't believe that just because I hold a certain view, that they should too.

In fact, I have no problem with someone being a Republican, as long as they've thought about it, and know why they are -- not just because they're subscribing to a certain dogma without considering all the ramifications.

I know this sounds cliche', but one of my best friends is a Republican...but when you really talk to her, you'll find that she's not nearly as rigid in her social politics as one might think of when they think of a Republican. In the same way, I'm not nearly as Liberal as those who might think of when they hear the "L" word.

It is more important to me that people celebrate the fact that they can wear an anti-George Bush t-shirt while he's still the President.

Doesn't it mean anything that we are free to do so?

I think so.

And that mindset of mine doesn't change when the President of the United States is a Democrat either. I honestly think that our ability to remain free to speak our minds, whether it's in the form of a bumpersticker or marching in the streets, is one of the most dear civil liberties we have.

And if that makes me a Liberal, then that's exactly what I am.

THAT is the week-long forecast for Denver.

In Fahrenheits.

DH and I were talking about taking a trip somewhere before I go back to work, but it's hotter everywhere we're talking about!

How hot is it where YOU are? And are you a Hottie just because of the temperature?

Which brings me to the Quote Of The Week:

"The only thing more annoying than Global Warming is Al Gore saying 'I told you so!'" -- Jay Leno

Sunday, July 23, 2006

My Aunt Kathy

There are few people on the planet whose voice calms my soul. One is my Mom, who still calls me "Pumpkinhead" when she says "I love you," and the other is my Aunt Kathy.

I know some of it has to do with the fact that she's my Mom's sister, so her voice has a familiar quality just like my Mom's.

But my Mom is up in the woods at Holden Village this week, and given what we've been through, Mom asked my Aunt Kathy if she would call me this week to check in.

Ever since my Mom left this week, Aunt Kath has called me nearly every day. It's Sunday night, and she hadn't called today, so I told Brian that I was going to call Aunt Kathy and give her a hard time since it'd been 24 whole hours since she called me.

When we talked, she laughed at me and said "I thought I'd give you a day off with your husband...I was trying to be good."

Well, Aunt Kathy is nothing if she isn't good. She's one of those people that if you know her, you love her. She's funny, smart, and just plain fun to talk to, because she gets me. Her sense of humor is the same as mine -- passed down through the generations I think -- so she's just a wisecracker like me. As much as I feel loved by my immediate family (Mom, brothers and sister), Aunt Kathy makes me feel loved as if I were one of her own children.

Tonight as we talked about what we did today, she said "It feels good to hear you." And I know she means it.

In the picture on this blog entry, Aunt Kathy is in the middle in the blue blouse. She and Mom went with us to Paris last fall, and it was one of my most favorite trips. Partly because I got to see Paris again, but mostly because I got to share it with two of my most favorite people in the world -- My aunt, and my mom.

Aunt Kathy, you are truly loved and appreciated. Don't ever forget that your niece in Denver loves you!

Thursday, July 20, 2006

One of Those Awful "Good Days"

I made it through the day without crying. What an awful day that was.

This morning as I was picking up and folding laundry in the bedroom, I realized I hadn't needed to hug Jacob's stuffed toy he got at the hospital to go to sleep as I have in nights past. There was a little thought of "well, that's good." But as I got to the end of the day, somehow just thinking and realizing that it was the first day I hadn't cried made me cry.

I don't try to hold it back. I just let the tears flow when they want. But lately, I think I've tried to make it better somehow -- to realize the loss, and on some level accept it.

But then there's the backslide.

The thing with grief is that it's like swimming through half-melted Jell-O. Some parts are easy, some are thicker and therefore more difficult to get through. Some are like that really hard part on the bottom of the bowl when it sits in the fridge too long, and it feels darn near solid so you don't think you can possibly get through it.

You can't tell when it's going to change either. It just comes, with a hair-trigger and a force one minute, then a slow easy calm the next.

Grief is a lot of work. But it's work that has to be done.

Often I've compared this loss to the loss of my Dad, who died 13 years ago. The shock, the anguish, the despair that followed losing my beloved father and friend is comparable on some levels.

On other levels, it's so much easier because I know grief. I've lived it for the past 5 years as we've tried to have a family, suffered three miscarriages, and now, the loss of our Jacob. I know how this is supposed to go. I'm supposed to stop being a control freak and learn once again how it is to let go.

But on a whole other level, this is the worst thing I've ever had to endure. Losing a son, whose body was so broken due to his genetic disorder that couldn't have been foreseen or prevented, now that's just plain awful. The hole in my heart is huge, and I know my husband feels the same way.

The only thing we do is turn towards each other for comfort. We keep going through each day and wait for the pain to subside enough to feel like we aren't just going through the motions of life anymore. We choose to get through this. For Jacob. For ourselves, each other and family and friends who have made such an outpouring of love and support.

People say I'm strong, tough, but really I'm not. I just know I'll get through it, because that is the only alternative compared to quitting, and I don't even know what quitting would mean.

And one quote from Winston Churchill keeps playing through my head like a tape player: "If you find yourself going through hell, keep going."

Wednesday, July 19, 2006

More Than I Can Count

I have received so many cards, letters and gifts from friends in the wake of our loss of Jacob.

Today my friend Meg came to get me to take me to a movie. She saw the display of cards and flowers, and said "So many people love you."

Then after she left a packet of mail arrived, and 10 more cards from my friends were enclosed.

One of my friends Kelly, sent me a CD of The Dixie Chicks Song "Godspeed", along with a print of the lyrics to the song, embellished with medallions of foot and handprints of a baby, so I could frame it.

The lyrics were as if they were written for Jacob. "Godspeed little man," it read. "Sweet dreams little man. Oh, my love will fly to you each night on angels' wings."

To say I cried is an understatement. I sobbed.

"God Bless Mommy and Matchbox Cars,
God Bless Dad and Thanks for the Stars.
God hears "amen" wherever we are,
And I Love You."

What beautiful words.

If you're the iPod type, you can find it on

Godspeed, Sweet Dreams.

Tuesday, July 18, 2006

Seeing Yourself As The Miracle That You Are

These are Jacob's feet. The little guy had little tiny feet, about the size of the end of my pinky fingers to the first knuckle.

This picture was taken by one of the nurses at the hospital. I doctored it on my computer to be more of a sketch drawing. I've enjoyed spending time working on Jacob's pictures. Some are too difficult for most people to see, but what I see is the miracle that is my boy.

When I spend time on various internet sites -- support groups and information sites that tell me more about Trisomy 18, I'm learning so much about Jacob's problems that it amazes me that he made it for as long as he did.

Boys do not survive as long as girls. In reading the boards for those who are deciding to try and carry their children to term, despite a Trisomy 18 diagnosis, all of those that I've read so far are expecting girls, and all of them have less serious problems (namely missing the major heart defect, known brain development problems and spina bifida -- all problems Jacob had.

When Jacob was born, he was half the size that he should have been for me being 5 months pregnant. I had just started my 6th month of pregnancy the week before, and you would have thought he was only about 16 weeks when he was born at 8 oz. and 8 3/4 inches long. Just think about how small that is.

As I consider the miracle that Jacob made it as long as he did, I am also struck by what a miracle I am -- and what a miracle each person on this planet is that lives to be born. All the things that have to go right to get us here, not to mention all the things our Mothers knowingly or unknowingly do to make us healthy children, all of it has to come together to make us who we are.

I hope each of you who read this take a moment to recognize that YOU are a miracle of life.

If you are blessed with children, please hug them extra tight tonight. Please speak softly to them, and please see them for the miracles that they are too.


Monday, July 17, 2006

The Vacuum

The nurse at the hospital called it "the vacuum" -- that sudden collapse of having that last support person leave you after they were there for you during a tragic time.

My Mom left this morning. She's boarding her plane right now, and will leave the city in about 30 minutes.

I drove her to the airport, I walked with her to check in, then we walked all the way to the security checkpoint, and there I had to let her go. We both cried and hugged and said how much we'd miss each other. I kept saying "We'll be ok", and Mom said she knew, but we both cried anyway.

Now I'm back at home, alone, and wondering, exactly what do I do with myself now?

I started a small list. Just little household things that won't be hard on me. I need to make a couple of pillows for the new living room furniture. Stuff like that.

But as I read the grief book the hospital gave me yesterday, it said that in the midst of grief, people try to fill up too much of their time doing things to run from the pain. I'm not supposed to do that either. What a weird balance. I'm home, and left to mostly mental work, and some physical healing to do, so I can't re-landscape the back yard or anything like I would if I had a few weeks off and were in good physical condition. I can't just sit here either. Maybe I'll just do a little laundry, go through pictures of Jacob's hospital stay, and start his memory book.


Sunday, July 16, 2006

The Communion

I spent the better part of my childhood inside a church, and the better part of my adult life outside, and today my husband and I belong to a Lutheran church where we enjoy being part of a great community of people.

This morning, Brian and I went to our early service with my Mom. I made it until the prayers were said, and there, at the top of the list, was a prayer for "Julie & Brian M., at the death of their son Jacob."

Of course I started to cry, and I cried through the prayers, the peace, the Communion, and the final hymn.

When I went up for Communion, I ended up on the side of the aisle where Pastor B. was giving the bread, and my crying set off her tears as well.

Then, at the end of the service, Anne, a gal I've known only casually, came over and gave me the tightest hug that just went on forever. "We know what you're going through," she said. "We lost a little girl the same as you." Oh, I was so sorry to hear that. We hugged and cried together for several minutes.

As we headed out the door, another couple came up. They're a favorite of mine, and as the Jim saw Brian crying, he started crying too. His wife Linda told us they lost a baby at full term 26 years ago.

Oh, how the most amazing people come to share their sorrows and let you know you're not alone. It just meant the world to us to have such support, prayers and tears for us and with us.


Thursday, July 13, 2006

Our Boy Is Home

It was odd, today.

We got a call from the funeral home that Jacob's ashes were ready for us to pick up.
I called Brian at work and let him know so he could come home early. The drive (not the commute, but the instinct) to get Jacob home was one of the most basic, strong feelings I've had since he was born, only eclipsed by the drive to hold him and talk to him and tell him how much he was loved at the moment he was born.

Brian came home, and we went out to get Jacob. We had picked out a brushed silver heart-shaped box, with a brass decoration on it. It's so small it fits in my palm, similar to how Jacob did.

We looked at his death certificate, talked briefly with the funeral director, who kindly hugged me as we left.

Then we drove home, and Brian asked the question of where we should put Jacob, the same question that's been on my mind a few times this week.

We decided for now we'll leave him in the living room where we can both see him, and maybe find a spot in a bedroom so Jacob can have his own spot in the house. I just can't see scattering his little bit of ashes in the mountains as we had discussed, mostly because I still think of him being so small, that strewing him about the big wide Rocky Mountains just seems like leaving my baby to the wolves and bears of the mountains.

Mom, Brian and I talked about how we envision Jacob -- some envision him in heaven with David & Dad, I just visualize him with his brothers and sisters mostly, but also think of him being near David & Dad because they are our most recently departed family members who I know would care for our boy.

But all I have left of him on this earth is in a little heart-shaped box, and that's the part I have to hold near to me, so near to me he will be.

My darling boy, how I wish I could see you whole and happy. But for now, you are home with me and home in heaven. We love you so much.

Monday, July 10, 2006

Jacob & Brian Picture

This is the very last picture I took of Jacob, and it's with his Daddy.

I just wish there could be a million more.

Thank you for the time we had you, little man.

Saturday, July 08, 2006

Just a quick picture

Brian took this picture of me and Jacob, as I napped with him yesterday. I have never seen myself sleep with a smile on my face before, but here I am.

The little guy is in the yellow hat in the blanket.

I love you Jacob.

The Day After

After we got home last night from the hospital, everyone collapsed to sleep around 6 p.m., and they were all up again by 10. I slept a little longer with the help of a Tylenol 3 until Midnight.

I woke up at 12 to find my Mom, sister and husband watching a movie in the living room. We all stayed up together a few more hours, then went to bed again with the hopes of getting back on a regular sleep schedule again.

I realized that my husband and sister had gone with the least sleep as they stood by my bedside throughout both nights, with very little sleep. My mom and my friend Shiela from church were in another room during the birth and my Mom needed a little more rest than us younger whipper snappers.

Amazingly, I slept more than anybody, perhaps because of the drugs they were giving me. Once I got the epidural, I slept a lot since I was almost pain-free.

I left a little note with Jacob when we left the hospital. It just said "This is Jacob Daniel M. Please make sure his blanket stays with him wherever he goes."
Then I wrote at the bottom another note that said "Jacob, my darling boy. I love you more than words can say, and we will never ever forget you. See you in heaven, our beautiful son. We love you so very much, Mommy & Daddy."

Today has been so hard. This morning the funeral home we sent Jacob to called and needed us to sign a form consenting to his cremation. I took a blanket to make sure he still had one with him. I didn't ask to see him, but she did say his blanket was with him from the hospital.

After we came home from the funeral home today, we came home to more flowers from my aunt, and offers of more food from friends. The fridge is stuffed.

We've sat around drinking coffee, talking and remembering. We've cried a lot today. I decided to start writing about Jacob's birth story, as I try so hard to remember everything, from the feeling of the weight of his little body wrapped in a blanket and held in my hands. How I stared at him for hours, fascinated by his face and his little body. I told him over and over again how much I loved him. How he would never be forgotten. We all did.

So today, I start writing about Jacob's short life on this earth. I hope it makes it easier to deal with the grief. Some of it will go on the blog, I suspect most will not. If it helps people understand what we've been through and how to respond when others go through it, then I hope that helps too.

For now, we don't need anything so much as we just need hugs and people to cry with us.

And for people to always remember our little boy and hold the miracle of his life in their hearts too.

We're home

We just got home from the hospital several hours ago now. It's 12:30 a.m. on Saturday, and our Jacob was born at 1:08 a.m. Friday.

We spent the whole day with him, crying, talking to him, and loving him as much as we could.

His birth was the greatest miracle and experience of my life. Never in my life have I loved someone so much, who's so small.

We have so many mementos from the hospital staff. Their kindness and goodness throughout this experience was so far beyond what I could have wished for.

I will write more later, but just wanted to let you know we're home, I'm doing ok -- just very sore, and sad beyond belief.

Our little guy was and is the most wonderful thing to ever happen to us.

I will blog as I can, but just wanted you to know we're ok.

Tuesday, July 04, 2006

Quiet Day

I've been doing a little housework, a little puttering around, a little preparation for the hospital, and a lot of talking on the phone today.

Today I found my positive pregnancy tests I'd kept, and put them in Jacob's box, along with a bunch of my medical receipts from all our appointments, and the early ultrasound pictures.

I started getting some things together for the hospital, like our camera, iPod, some of my own jammies, and my own box of Kleenex, since I anticipate crying a lot in the next few days.

Tomorrow I'm going to Target to get a couple of blankets and maybe a hat or outfit to put Jacob in. I want two blankets so I can leave one with him, and take another home with us to keep.

There's a part of me that's scared about this still, but I also feel resigned to the fact that this needs to be done, and I will get through it. There are drugs for the emotional stuff and for the physical pain, so really, if I need it, I can use them. I'm hoping to get through it without too much medication though, because a part of me wants to feel it all.

We had a couple of friends stop by today with food and a short visit. After staying in the house for the past 10 days, I was surprised at how welcome it was to have some company over. As today progressed too, I realized how glad I am my Mom and sister are coming. Just to have my women family members come to help get me through this is really helping me.

Monday, July 03, 2006

Decisions made

For more information on Trisomy 18 & other genetic disorders, please see the website: or

Brian and I went to see our little boy Jacob one more time on ultrasound. It has been 10 days that we got the initial diagnosis of spina bifida and possibly Trisomy 18.

It feels like forever.

We have decided to move forward with inducing labor to end the pregnancy due to medical reasons, given the extremely bleak outlook for our little guy and the confirmation of full Trisomy 18. The perinatologist said today he was "even less impressed" with Jacob's heart (he only has 3 chambers working and has hypoplastic left heart syndrome), plus all the other problems we've seen before. I saw his spot where the spina bifida is on his spine, and it looks a lot larger than it did before. Amazing.

He wouldn't really show us his face (he was face down against the back of my uterus, but we tried to get one picture. He did, however feel free to show us his rear end and his little pee-pee again. I told Brian "yep, that's our kid. Doesn't want to do anything but moon us."

Ten days ago he was measuring a little less than 2 weeks behind, now he is a full two weeks behind in his head circumference, but 3 weeks behind in his belly. He should be 21 weeks, 3 days today, and overall he's measuring closer to 18w5d or so. This is also a sign that his growth is slowing and that he is unlikely to make it to term even if we did wait.

We plan on going in this week to induce labor. My sister Jill & Mom are coming to be with us and help us through this. Initially I was very afraid of doing labor & delivery, but as time goes on, I find I'm less scared of that, and just want the opportunity to give him a birth, and for us to hold him and tell him we love him, and get a chance to say goodbye.

Today when I told our perinatologist how we've struggled with whether to end the pregnancy, but felt that we needed to, I was so glad when he finally said "I think it's the humane thing to do." I don't think that inner struggle will ever go away completely, but we hope to be at peace with it someday.

This is a deeply personal and difficult decision, one where there is no right answer because there is nothing easy about waiting for your child to die in the next few weeks or months and waiting for that -- or going through it sooner with the chance to say good-bye in person with a few minutes of life in your arms. Both choices end with a great tragedy, and all we can do is try to get through it now.

Thanks everyone for your love, support and prayers.

Some preparations

Yesterday was a long day, as all days have been. I know I've said it before but each day feels like an eternity. I feel like I've lived a year in the past 10 days since we got the bad news that Jacob wasn't doing well.

Brian went to play disc golf yesterday afternoon. He was so cute, not sure if it was appropriate, and I said GO. Play a bit and put this away for a few hours. During the week he's been working while I stay home, and when he gets home he gets to deal with all this sadness. I figured with his one day off this weekend he should have a few hours to forget about all the tough stuff.

I spent some of that time sitting down and writing a letter to Jacob. It's only 6 or 7 pages handwritten, but I felt so much better having gotten the words out. I put it in an envelope with a memory box I've started, along with a studio picture of me that was taken in May: happy, glowing, and barely showing my baby bump.

There is so much to do and say, and so little time to do it in. I've been trying to get some phone numbers together for people to call, and getting ahold of the people who need to make those calls for us. I took out all the maternity clothes I can't bear to wear, and gave them back to the friend who gave them to me. The few others I received as gifts and bought myself are in a box as yet unknown as to what to do with them.

Today we go for an ultrasound for one last look at our boy. I want a good look at his heart, because I want to make sure it's as broken as they say, and I want my perinatologist to explain the intricacies of the problem so we fully understand it all.

Then, we move forward another step, wherever that takes us.


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