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



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

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.

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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". 

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!

Heaven is for Real

When Connor started asking me about Abby in Heaven, a few smart people here suggested I read Heaven is for Real by Todd Burpo.  I got around to it about a month ago and I must say, those who suggested it were right- it was a heartwarming, easy read.  Even if you don't believe in Heaven, or just aren't sure how you feel about Heaven, I think you'll enjoy the story.  The author, Colton's father, is a pastor, but he isn't preaching or trying to convert non-believers.  This is just the story of their family's experience, and Colton's testimony.  I really can't imagine any parent not being moved by Colton's story.  It's one of hope and healing.

Here is their interview on the Today Show this week.  If you don't love the interview, don't let that turn you off to the book- the book is far more satisfying :) 

Beautiful sunsets and names in the sand

Me and my kids :)

"How very softly you tiptoed into my world.  Almost silently, only a moment you stayed.  But what an imprint your footsteps have left upon my heart." -Dorothy Ferguson


This quote is from Abby's prayer card, and as the weeks pass, those words become more true.  She was so small, and her stay was so brief, yet she changed me so much.   That little angel is always on my mind, and thinking about her led me to the most beautiful website a last week.  I was drawn in by images of some of the most beautiful sunsets I've ever seen, and the tagline "At the end of the day all the children of Heaven come together and paint the colors of the sunset."

Names in the Sand is a children's memorial site run by Carly Marie Dudley, a bereaved mother who is also a photographer in Australia.  Inspired by her son who was stillborn in 2007, Carly writes your child's name in the sand by the shore at sunset and photographs it.  It sounds so simple, yet it is so beautiful and special.  She never reuses a name, each image is unique.  It doesn't seem like a big deal, but there are so many special things Abby will never have- capturing a sunset just for her seems nice.  The images go up on a memorial page with any wording you like, all free of charge, and you can purchase your child's sunset image to print.  Since 2008 she has done over 10,000 names.  I thought it was so beautiful, and was very happy to be able to submit my Abby's name tonight.

I'm glad we knew

This past Saturday another family in our parish buried their newborn daughter, Anne Marie.  I'm not sure of their circumstances, but I got the impression that it was a normal pregnancy and they had all the normal expectations that go along with it.  I don't know them, but my heart broke for them and I cried, knowing how awful and shell-shocked and suddenly empty they must feel.

It also made me feel blessed to have known that Abby had a life threatening condition.  Yes, there were many times I felt envy toward women with "normal" happy pregnancies, and I've heard from women who didn't know that they are grateful to not have been burdened.  No doubt, learning that you are carrying a child who may die, or be born with a life threatening condition makes for a very loooooong and burdensome pregnancy. In my case, it allowed me the opportunity to be so much more present in my pregnancy and literally extended the time that our Abby was physically with us.

Abby's life was so short; I had a total of 104 hours with her once she was born.  Expecting she would have limited time with us, I spent so much more time bonding with her while pregnant.  I didn't properly appreciate that time during Connor's pregnancy, but this time I knew it may be all I would get to have with her.  I held my belly and rested my hands on her any chance I had, so appreciating each movement and kick.  As her movements got quite painful for me toward the end, I cherished them even more fearing that the sands were running ever faster through our hourglass.  Being so present in this pregnancy made it feel like Abby was here for far longer than four days.  We named her as soon as we knew she was a girl, giving her an identity and her own place in our family long before she was born.  I talked to her, and cried with her, and took time to just BE with her whenever I could.  (She's actually changed my temperament profoundly, as my family will attest that I could never just BE before.)

Almost everything that happened after Abby was born was decided upon or coordinated beforehand.  While I'll probably always agonize over what might have been done differently, I know that I spent every minute of Abby's life focused on loving her and not on the unfair and impossible decisions that had to be made.  We were able to make every minute count.  While it was a very difficult and long pregnancy, I'm glad we knew.

Last night Connor and I were talking about Abby (it's pretty much part of our bedtime routine), and as usual, he said that he was sad we never got to bring her home.  As I was thinking, yes, understatement of the year, he exuberantly exclaimed “I’m just going to get some wings and fly right up to Heaven and get her and put her in her crib!”  By exuberantly, I mean with a huge smile, bouncing on his bed, and reaching up to the sky as if to catch her that very moment.  It was one of the sweetest things I’ve ever seen, and I'm happy to have an image of it frozen in my mind.

I know it’s common at his age to view death as being reversible, either for want of a loved one’s return, or for fear of it. The best I could do in that moment was to explain that the road to Heaven is a one-way street; Abby can’t be with us in body, but she's with us in our hearts (I’ve said and heard it so many times I'm starting to loathe the words; they almost sound cliché).  Wouldn’t you know my brilliant boy gave me a Dennis the Menace smile and said “But we’ll all get to be together again when WE die and go to Heaven!”  He looked at me as if to say “HA- I got ya!”  I love how he can find comfort and rejoice in that thought, even though I can’t yet.  I know his grieving will likely change as he matures in understanding, but sometimes I really I wish I could look at things the way he does right now.

It's a little harder than I thought

Writing about life post-Abby is a whole lot harder than I anticipated.  I suppose part of that is because a good deal of what I’m thinking and feeling still requires reconciliation/ sorting out.  I am posting now partly because a few people have emailed me to ask how things are- I find that shocking!  And rather flattering, I admit, so thank you for caring.  I’ve actually journaled a lot in the past few weeks; once I have better perspective I think I’ll be able to share more.

I wouldn’t consider myself an optimist, but the truth is things right now are significantly different than I thought they would be.  For someone who deals with numbers for a living, I completely ignored statistics associated with Abby’s condition.  I rationalized that someone has to be in the small percentage of people who live with HPE, even if only for a few months or years, so I should prepare to be one of them.  Plus, I was afraid if I expected her to die, I would be wasting time that should be spent preparing for her care.  I know, it doesn’t make any sense.

These days I view time in terms of Abby’s birth, so to give perspective, she turned 7 weeks on NYE.  I say it in the present because that’s how Connor talks about her.  He asks me how old she is in Heaven, when her birthday is, what we’re going to do to celebrate it, and how old he will be when she’s a grown up.  I considered explaining to him that she will never age; she died at 4 days and she will eternally rest as a 4 day old baby, but he really likes the idea of her growing up in heaven right along with him.  So I let it be; she's growing in Heaven everyday, just like he is here on Earth.  We’ve actually been discussing things we can do “with her” like having a snack time with her at the cemetery or reading her his new books (yes, I did take that idea from Elizabeth Edwards).  I think this is one of the hardest things to deal with; I can have a relatively good day, then when I put him to bed Connor will start talking about her in ways that just tug at my heart.  And it's so hard to not cry in front of him.