Welcome to our family blog!

This blog was started in October 2010 shortly before our daughter, Abigail Grace, was born. She was diagnosed at our 18 week ultrasound with Holoprosencephaly (HPE), and we were preparing for a child with very complex medical needs and a shortened life expectancy. Abby was born on November 12th and sadly passed away just four days later. This blog follows me, Matt and Abby’s big brother, Connor, along our journey from preparing for Abby’s birth through our adjustment to life without her.

Tuesday, June 28, 2011

It was just about a year ago

It was just over a year ago that we had our 18 week ultrasound and found out we were having a girl, and that "something was wrong".  One year ago that everything in our little family changed.  I became an Internet addict trying to make sense of everything.  It got me thinking about the email we sent some of our friends to share the news, as we couldn't bare to repeat the story over and over (this is the somewhat edited version):

"We have some heavy news to share with you....Last week the results of a routine ultrasound led to the unfortunate diagnosis of semi lobar holoprosencephaly in our daughter...her name is Abigail. In a nutshell, holoprosencephaly means that around 4th week of development, the brain failed to properly divide. Semi lobar means that it did divide somewhat, but still not enough to be "normal". Could be quite far from normal, actually. It's caused by random abnormalities in her genes or by a chromosomal abnormality. This will affect both her cognitive and physical development, though we won't know exactly to what degree until she is born. She'll very likely never walk or talk, and she will have some facial deformities. She's also may have issues with eating, sleeping, and seizures. Our doctors believe at this point that she should make it full term, though her life expectancy after birth will really be determined by how severe her symptoms are.

I apologize if this seems like a lot of information (or frankly too much info) to be sharing, but these seem to be the answers to the questions we've been asked. No, there's no cure, no operations or procedures that can be done, and there's no chance that she doesn't actually have this problem. We just have to accept it, deal with it, and pray that we're strong enough to take care of her the way she deserves for the time she's with us.

Please don't be offended that we're sharing via email; we've just found telling our story multiple times to be tiring, and we want to include you in what's going on with our family. Please don't feel awkward around us, as we're going to be seeing several of you in the upcoming weeks for happy occasions. We appreciate you keeping us in your prayers.  Love, Matt & DG"

It seems like we wrote that a lifetime ago.

I don't think I ever mentioned it, but we had to wait five months for Abby's autopsy meeting. That's a LONG time! I'm glad we had it done though; we received answers to most if not all of our questions, and all of the doctors there were incredibly thoughtful and compassionate in their presentation and response to our questions.  They determined that Abby had Alobar HPE (as opposed to semilobar, or not having HPE at all) and CONS along with Lissencephaly and a host of secondary conditions.  By a host I mean almost an entire 8.5x11 page of bullet points of conditions.  I stopped looking them up after a while because I decided it didn't really matter.

We've all been missing her a lot lately.  Love you Abby, XOXO

Abby's crib, with all her stuffed animals and blankets

Saturday, May 21, 2011

The Last Loose End

We've been waiting for Abby's headstone to be installed, and it finally has been!  It took a while for us to decide what we wanted on the stone, as it is our family stone, and it's just a really weird thing to think about at 29 years old.  We were very fortunate that my grandparents already own a large section of plots at the cemetery near our house and gifted a plot to us.  Because Abby is such a peanut, there's still room for me and Matt.  I find some comfort in the fact that Connor will never have to make these decisions when we die.

I love Connor's reflection in the stone

Sunday, May 1, 2011

Babylost Mother's Day

When I was having Abby's Name in the Sand done, I learned about International Babylost Mother's Day.  There's a group in Australia who celebrate it in a really meaningful way, and I've found a good number of people here in the United States who acknowledge it too.  It is a celebration of Mothers who have lost a child during or after pregnancy.  

I have several friends and family members that I know of who have lost babies, most to miscarriage and one to stillbirth.  I really don't think most people have an understanding of the magnitude of this kind of loss unless they have a personal experience.  I know I didn't until I lost Abby.  Abby was born, was alive for four days, so people are wonderful and acknowledge her as part of our family.  People barely acknowledge a miscarriage after it's happened, probably because a child that they never knew doesn't really affect them.  But their mothers and fathers have been affected; they knew them.

Everyone in my circle who has shared their loss with me has been lucky enough to have other children (either before or after the experience).  But that doesn't make up for their loss.   Other children certainly bring joy where there might not have been otherwise, but they don't erase the memory or heartache.

Next week people who don't know me may see me with Connor and wish me a happy Mother's Day, but what for the mothers who's children cannot be seen?  They are mothers too, but will anyone acknowledge them?  I'm posting the Babylost symbol as my profile picture on Facebook from today, Babylost Mother's Day, until next week on the traditional Mother's Day in rememberance of all the babies who have been lost to my family and friends.  Even if no one has met your child, even if you were only pregnant for a month or two, you are still that baby's mother.  Today and on Mother's Day, when you're thinking of the child you lost, I'll be thinking of you.



Thursday, April 28, 2011

A little bit of Easter

Since I've been a great big slacker when it comes to updating with holidays pics, etc, I've decided to start making up for it now :)

Connor looked super dapper in his Easter outfit.  Unfortunately, all he really wanted to wear was his new soccer uniform.  This outfit (which included a vest which didn't make it into any pictures) only lasted for about 45 minutes after church, 30 of which were spent at the cemetery and in the car.

We visited Abby before dinner.  I'll be so happy when her headstone is installed and these flowers don't all fall over with the slightest gust wind


We waited for the birds to attack...thankfully, it's a bit early for much action

He was actually trying to get away from me in these pictures, but I told him there would be no egg hunt if he didn't smile for me.  He must really love eggs :)  I thank God every night for that smile.  

My mother has made a Bunny Cake every Easter since I can remember.  The young baking apprentice talked all week about making a bunny carrot cake; I'm pleased to say it lived up to the hype!

Just shameless- Connor's fingers went right into the frosting without a second thought.  Note the soccer uniform.

Our family, minus one.  It's a nice picture, but it's bittersweet to look at the three of us and call it our family picture.  It feels like she's so obviously missing.  

Just a few days before Easter our plum tree blossomed.  We planted this tree when I was pregnant with Abby, before we knew she was a girl, before we knew our time with her would be short.  

I do not have a green thumb, by any stretch of the imagination; in fact the only plant I've ever been able to keep alive for an extended period of time is a peace lily, and that's because you have to intentionally kill a peace lily with chemicals or by starving it.  I could probably keep a cactus alive. I used to joke that "I can't keep plants alive, but I can keep my child alive", though that joke no longer seems appropriate.  

I'm really hoping I can avoid killing this tree; in fact I'd like to plant a garden for her if I can get the motivation to plan one.  Perhaps Abby can send me some "special help". 

Thursday, March 24, 2011

Abby's Sunset

Here's Abby's picture on Mullaloo Point Beach.  All purple and orange sunsets there this time of year; so pretty!  Here's a link to the memorial page: Abigail Grace Allard

On the memorial site her name is written as Abby, which is how I requested it.  I shared this one here because I thought both were beautiful!