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.

The Aftermath of Infant loss: Getting back in the saddle

This post is kind of long, so feel free to take a break while reading, get a drink and come on back to finishJ  


Abby's first ornament, given to her before she was born.
Even then I guess we knew she was meant to be an angel.



Blogger paralysis

I haven’t posted to the blog in over a week, and it’s not for lack of things to say, just lack of ability to sit down and articulate my thoughts.  This past week we celebrated Abby’s one month birthday, and today is her one month Angel Day, or anniversary of her passing.  My heart has been very heavy at times, but also joyful for events like our friends’ wedding and Connor’s excitement over the holidays (and Star Wars, and football, and all kinds of other things) that shines a light for us everyday.  While much of my thoughts are just for me at the moment, there are many things I’ve wanted to share with those of you interested and kind enough to follow along our journey.

 

Connor working on his gingerbread man, shining his light



One thing I’ve been thinking about is the focus of this blog, and how its original purpose no longer exists.  I expected not to share my feelings and impressions of this version of our life, but to share information about our baby’s condition and hopefully network with other parents to help improve Abby’s care and quality of life.  Now that she isn’t here, I question the purpose; do I have anything worth sharing?  I’ve thought long and hard about it this week, and decided that there is a place here for a voice on infant loss.  While by no means a clinical expert, I can speak from our family’s first hand experience.  What we are going through is a part of the human experience no one wants to share in, yet many have walked in these shoes before us and many still will follow.  I do appreciate those who have reached out to us who have had similar experiences.  Even if we haven't talked yet, knowing that you've offered is appreciated.

I posted these two pictures below because looking at them makes me so happy. They also make me cry sometimes, but only because I remember being so happy when they were taken.  In the one with me, I was holding Abby so close; I had leaned in to smell her head and kissed her.  The photographer caught it in low light and it's one of my absolute favorites.  In the one with Matt, Abby's body is so soft and pink, and he is looking at her so lovingly.  I want to smoosh my lips into her soft little arm and cheek.  Seeing these pictures really warms my heart.
 

                   

                       One of my favorites of Matt & Abby



One of my favorites of me and my Angel

 

Back to Work

Matt and I are both getting back into the swing of things at work.  He is back in just about full time and I am slowly integrating back into my office.  My job affords significantly more flexibility in this regard; considering that I was expected to be out on maternity leave anyway, having me in the office at all is like a bonus.  Well, if you consider someone who doesn’t really fit into her business attire and stares blankly at the wall from time to time and occasionally bursts into tears a bonus J  Needless to say, we’re both making our way back into the real world, each at our own pace.  Some have questioned me being in the office this early after surgery, birth, and Abby’s passing, but it’s honestly a good distraction if in small doses.

“You’re back- you’ve had the baby!”

Integrating back into the real world, of course, means answering questions from those who knew we were pregnant.  If the comment comes from someone I don’t have to deal with often and is simply, “Oh, congratulations, you had the baby!” I just politely say “yes, I did, thank you”.  It’s the follow up questions “How is she?  Connor must love being a big brother, etc.” that are uncomfortable.  I felt so bad for the mother of one of Connor’s classmates when she asked.  I could tell she just felt so awful.  Matt has to deal with it far more often than I do, as he deals with the public at a much higher volume.  I know the days can be very difficult for him because of this.  I’ve yet to figure out a really graceful way of telling people that Abby died.  They are so devastated and embarrassed when I tell them, and then I find myself consoling them, as they repeatedly apologize for the gaffe.  I’m pretty good at not getting physically upset when this happens, but I know it will eventually get the better of me when I least want it to.  I almost wish I could wear a t-shirt that says“Yes, we had the baby, but sadly Abby passed away.  Thank you for your condolences”.   Do they make those? A hat maybe?

Trying to celebrate

As I mentioned, we did attend our friends’ wedding last weekend.  It was a beautiful event and the bride and groom were beaming the whole time.  I love when the couple looks REALLY happy through the ceremony and everything.  This couple did.  Most of the people there knew our situation, so there weren’t any awkward questions.  Matt and I enjoyed seeing our friends, and we successfully made it through dinner and the cutting of the cake.  I think by then it had just been a really long day and I was too tired to do the “in public” thing any longer.  I headed home to my bed and Matt, who was part of the bridal party, stayed with his friends for the rest of the night.  I really hope he had fun, because he deserved to. 

Getting through Christmas should be interesting…a long weekend of celebrating, when we're really not in the mood to celebrate.  When people ask us what we want or need this year it almost seems silly.  Um, I want to have my heart unbroken and see my baby sleeping in her crib.  Can you help with that?  No, no one can.  I appreciate that people want to be generous to us, but the last thing on our minds is gifts.  I wish it was more like Thanksgiving, where the focus is just to visit with family.  I think we'll just have to once again remind ourselves of all we have to be grateful for and focus on that. 



At our friends' wedding



The happy Bride & Groom :)











Fat-free dressing

This week I discovered that Macy’s has an entire department dedicated to “Shapewear”.  This includes items with taglines like “fat-free dressing” and “body behave”.  One tag said “Your clothes shouldn’t require 45 minutes of cardio to wear”.  It was really quite amazing to go through; tubes, tanks, slips.  This is some very serious spandex we’re talking about- “Spanx” is just the beginning.  There is a piece to go under just about any cut dress you can find.

I also discovered that I clearly have no concept of the size and shape of my body.  If you’ve never had a baby before, let me enlighten you- there is a very specific post-partum body that new mommies have.  We’ll just call it a bit curvier with a pudgy lower abdomen.

Now, I’ve had this “mommy body” once before, so why am I only being enlightened to this booming shapewear industry now?  Because last time I had another “accessory” to distract from the curves.  It’s what most women get with their mommy body, it’s their baby.  No one cares what you look like when you’re holding or pushing around that bundle of joy.  Your hair doesn’t need to be done, you can go out makeup free; your clothes don’t have to fit properly.  All you need to look like a million bucks is that gorgeous baby and the smile he or she puts on your face. 

Why do I even care how I look right now?  Matt and I have a wedding to attend this weekend.  Yes, four weeks and one day after giving birth to Abby, and exactly three weeks to the day after laying her to rest, Matt and I will be at a wedding for very close friends of ours.  Matt is actually in the wedding, and I will encase myself in military grade spandex under my dress to look half way decent next to him.  I am praying for the strength to make it through this event and be joyful for our friends who are celebrating such a wonderful time in their lives.  We’re glad to be with our friends; we would never want to miss celebrating such an important event.  But it will be the first time I’m really going out in public beyond dropping Connor at school or shopping with my mother.  Much like Arthur’s mom, I’m just hoping no one pulls the trigger. 

Finding Comfort

A few days ago I posted on Facebook that "it melts my heart to see Connor take one of Abby's blankets to bed with him".  As I expected, everyone thought it was about as sweet as I did.  I should mention the reason he had that particular blanket.  About two hours prior to bed, Connor informed me that he was very angry and going to break all of Abby's things; I thought that blanket seemed the most durable of those she'd received.  So, I let him thrash it around the room a few times until that got boring to him and he left it on the floor. That night before going into his room, he walked into Abby's, picked up the blanket, gave me a look, and said "I'm keeping this" as he climbed into his bed.

This is pretty representative of the struggle we're having these days.  We haven't started any formal sibling grief program, but it's next on the list of things to do.  Over all Connor is doing well; he's done fine in school and kept to a regular schedule.  He recognizes that he's upset and uses words like "sad" and "frustrated" to express himself, and we're all sad and frustrated, so he fits in quite well.  Like another HoPE family mentioned, it's not unusual to hold onto the material things that connect us to our children.  Right after we came home I held onto the outfit Abby wore in the hospital for a few days, just until it didn't smell like her anymore.  I probably looked silly, but sleeping with it was comforting.  This seems to bring some bit of comfort to Connor.  And seeing Connor cuddling with one of Abby's blankets bring a bit of comfort to me too.

Connor, sleeping with Abby's blanket from Threads of Love

Met with Genetics today

Today we have a new abbreviation, CONS.  It is short for Cerebro-Oculo-Nasal Syndrome.  This disorder has some manifestations suggestive of the Holoprosencephalic spectrum.  It is characterized by central nervous system anomalies, and includes HPE in some instances.

What does this mean?  It means that Abby actually had another, apparently more rare neurological disorder, which has many of the same characteristics as Holoprosencephaly, however it is different.  Two of the major physical clues to this were the shape of Abby’s head and the wide placement of her eye sockets, and absent eyes. 

Go figure- we found an even MORE rare condition, with even less research available than HPE.  I have so far been unable to find any evidence of any prenatal diagnosis of this disorder, and most of the research appears to come out of Brazil.

This may seem weird, but I’m sad that Abby didn’t have HPE as we thought.  Or, maybe she did have HPE along with the CONS?  Honestly, I don’t know and it doesn’t really matter since she’s no longer with us. However, I’m glad that her prenatal diagnosis was HPE and not something else. I would never have found Families for HoPE, and would never have been prepared for her arrival.  Regardless of the specifics of her condition, she was a child who had a neurological condition.  The condition manifested itself in many physical abnormalities that we had to prepare for, and there was a great likelihood that her time on Earth would be short.  It would have been a horribly lonely and HoPEless 5 months from the time she was diagnosed until now if we didn’t have the HoPE community.  Thank you for including us, as we so clearly needed you J

The good news is, as we thought, nothing was found that suggests that Matt or I are carriers of the few genes that would make this a reoccurrence in future pregnancies.  As Dr. Abuelo put it, “Abby’s condition was like being struck by lightening”.  So, we can try to get pregnant again when we’re ready, and Connor doesn’t have to worry about passing anything along to our future grandchildren. 

I thought I’d feel happier after getting this news; perhaps thought I would find some closure and comfort in the genetic testing and “go ahead” for future children.  But I really don’t.  No matter how much information you have, or how great you find out your own genes are, losing your child still f’ing sucks. Sorry, I know that isn't terribly inspirational, but it's true.

A Story I Identify with

This past Sunday was the first Sunday of the Advent, and the first candle represents hope.  Our Pastor said "Hope is like light in the darkness." Each time I hear or see that word somewhere I feel like Abby is reminding me she's still with me.

I have a lot on my mind right now, but it all seems to be stuck in my stomach at the moment.  I always seem to have something to say, but right now anything worthwhile seems to get choked back.  Instead, I'd like to share a very well written Perspectives series on the HoPE blog, written by a mom who lost her son a few years ago.  She had a bit longer with her Arthur than we had our Abby, though far less time to prepare for his arrival.  Links to the first two entries are listed below. 

The Thirteen Days of Arthur

We got by with a little help from our friends

If by any chance anyone from Women & Infants reads this, I'd really REALLY like to thank Dr. Bender and NICU nurses Patty and Nancy who came to Abby's service.  That was unexpected, and it meant to much to us that you cared enough to see Abby all the way through.  We couldn't say enough about the doctors and nurses who cared for Abby; they were truly wonderful. Thank you.

Remembering to be Thankful

Tomorrow is Thanksgiving, and it is also Matt’s birthday.  As you may expect, we are in no mood to celebrate anything, but we’ll go to dinner for Connor.  He deserves to have the normalcy of Thanksgiving dinner with family.

Despite the fact that we’re sad in ways that our language is insufficient to describe, there are always reasons to be thankful.  I’m putting some in writing to remind myself should I forget.

I’m thankful for…

• Our family who has shown us immeasurable support through all this.  I don’t know what I would do if my mother didn’t come over each day to make sure Matt and I are still functioning and taking care of Connor.  
• Our friends who have shown support but respectfully given us space to grieve. 
• Our Church community for making impossibly painful arrangements as easy as possible, and for sending over endless dinners along with their prayers.
• The Families for HoPE organization and the entire HoPE community of parents, children, and angels.  As another mother mentioned on the HoPE blog, they really helped us prepare for Abby’s arrival.  
• The Now I Lay Me Down to Sleep organization and Alex Terry, the photographer they sent to the hospital to take our beautiful family photos before Abby passed away.  I was nervous about having a photographer come, but Matt and I are so, so grateful for the beautiful photos she took.  What a gift to give a family going through this.

One of the many beautiful messages we’ve received said I reminded her that motherhood is an honor and a privilege, which we sometimes take for granted. How true that is!  I am most thankful for my husband and son.  Instead of pulling and pushing against each other in our attempt to get by through our sadness, we’re taking turns being strong so we can lean on and hold each other to get through it. 

Coincidentally, November 25^th is also National Holoprosencephaly Awareness Day.  One year ago I had no awareness of this condition whatsoever.  I sincerely thank those family and friends who made a donation to the Families for HoPE in Abby’s name.  Families receiving an HPE diagnosis need this organization for resources and support.

We HoPE your family has a happy and blessed Thanksgiving.

A Few Good Men...Abby's Funeral Day

Matt surprised me two nights ago when he told me he wanted to read the eulogy at Abby’s funeral mass.  Parents just don’t do that; but he really wanted to.  He told me that I took care of her for 9 months and most of her 4 days of life; he wanted to do this as his gift to her.  Matt said, “If you write it, I’ll read it”.  So, together we sat down and talked about what our girl meant to us and to our family.

My Connor is just four years old.  He’s spent the past two days preparing for “Abby’s special Mass”.  When we explained about the casket and the procession, he insisted that he would help his uncles carry the casket in.  “I have to because I’m the big brother.  I have to carry my baby down the aisle.” 

Seriously, I thought to myself, what are these guys trying to do to me?  As it turns out, they both rose to the occasion like you could only imagine.  My husband, who is the life of the party but not what you would call a great public speaker, gave the most beautiful, touching eulogy for our angel.  My son, who sometimes hides behind me going up for Communion, proudly held the handle of his sister’s casket and walked her down the aisle.  He looked like such a handsome little man.  These two guys made me so proud today- thank you Abby, for bringing out the best in your dad and big brother.  Their love for you really shone through today.

I wish I had a picture of Connor “doing his job” as he put it, but I don’t.  Below is the Eulogy Matt gave today.

Prayer is powerful.  We often pray to God when we’re asking Him for something, begging Him in our most desperate hours.  Hopefully we remember to pray to God to thank Him when we are joyful too.  We have spent the past several months torn between desperate and thankful conversation with God. 

Our Abby was with us for just four and a half days, but we’ve been learning from her since she was conceived.  Many parents of children with special needs say that they learn far more from their children than they ever teach them.  We agree.  In fact, we never had the opportunity to teach our precious girl anything, but she has helped us grow and learn in ways we never expected.

Abby, you brought your mother and father closer together as a couple and taught us how to love so much better than we ever could before.  You’ve reminded us that our family is the most important thing in the whole wide world, and that you and Connor are the most precious and amazing gifts God could ever have entrusted to us.  As we grieve for you we also thank God for you, every minute, of everyday. 

No big brother could have been more proud or more excited than Connor.  He loved you from the minute he discovered we were pregnant with you, correcting anyone who asked him about becoming a big brother, “Oh no, I ALREADY AM a big brother!”  He reminds us everyday that he IS your big brother, even though you’ve gone to Heaven.  And he’s right.  You were ours long before you were born and you will always be our baby girl.

We’re so grateful for the short time we had with you.  Each minute we spent with you was a blessing, for which we are so thankful.  We cherished your every single breath and we can still feel your soft skin against us as we held you in your final hours.  Not one second of your life was wasted or taken for granted.  Thank you for letting us love you and for leaving your imprint on our hearts and souls.  We will spend the rest of our days loving you and honoring you.

Abby, with the exception of having to leave you at the cemetery, I pretty much held it together today.  I didn’t want to upset your brother.  But my heart is so broken.  I’d give anything to put you back inside me where I could take care of you. I hope you are making friends and having fun with all the angel babies that you’re meeting in Heaven.

Four and a Half Precious Days

It was the equivalent of a long weekend.  Have you taken an extended weekend vacation lately?  Maybe headed to Vermont to enjoy a few days of the Fall foliage. That is about the extent of my beautiful daughter’s life.  Abigail Grace was born before the sun came up Friday morning and passed away on Tuesday afternoon.  I feel like I blinked and it was over.  Did I even wakeup on Friday morning, was it just a dream?

We knew the cards were stacked against her from the beginning; when we received her diagnosis it was made very clear to us that her condition could mean a very short life, and certainly a challenging one.  Matt took two weeks off of work so we could alternate nights in the NICU after I was discharged.  I made arrangements to work from home with the expectation of multiple early intervention therapies happening each week in our home once Abby made it out of the hospital.  None of that ever happened.  On my day of discharge it all just ended.

It was early, and I went down to Abby’s room to be there for rounds.  When the team finally made it over to 2445 we joined them in the hallway to find that there were no major changes, but that the MRI revealed Abby actually had the Middle Interhemispheric Variant rather than Semi-Lobar as we thought.  Just after hearing that, Abby’s nurses told me it was “almost time”.  I immediately took off my sweater and Abby rested her face against my chest.  I laid there holding her, kissing her head and inhaling her as deeply as possible; feeling like each breath would be her last.  Matt sat right with us, rubbing her back and holding my hand, and then he took his turn holding her for the last time.

Connor left school early to say good bye.  He really just wanted to color, but he gave her a kiss first.  We didn’t push him, as he was nervous.  We decided to give Abby a bath and dressed her in the pink two piece outfit Con had specifically chosen for her to wear home.  It was as I was dressing her that I realized she was no longer with us.  I picked her up and held her to my chest and cried.  It was like I was holding a baby doll, and couldn’t let go.  I don’t remember all of the conversation around me, but I was holding her with tear-filled eyes not paying attention to anything.  Eventually I had to put her down, which felt like the most unnatural thing in the world to do.   

We could have kept Abby around for a few more days on a ventilator, but that wouldn’t have done her any good.  Our objective for her short life was for her to be comfortable and to know love.  We did our absolute best to make that happen for her.  She was meant to get her wings and join the other HPE angel babies. 

I can’t even begin to describe how heartbroken we are.  After we explained to Connor, who has a reasonable 4 year old understanding of death and Heaven, that Abby’s body just didn’t work like his does, he replied “But we have a crib for her.  She can just sleep there”.  Oh Lord, I want her to.  I wish I could have just taken her home and tucked her into her beautiful girly crib to watch her sleep eternally. Instead, this morning Matt and I picked out a tiny casket that she will be laid to rest in after her mass at St. Teresa’s on Saturday morning.  ***We did not print an obituary in the paper, however anyone who wishes to honor Abby with us is most welcome to attend.  The service is at St. Teresa's Church on Newport Avenue in Pawtucket at 10AM, this Saturday, November 20th.

Thank you, thank you a million times for all of the love and support you have offered us.  Our family and friends, our new friends from the HPE community; I can’t even begin to express our gratitude for the support we’ve received.

D-Day...Delivery Day, that is

 Abby's luxury suite in the NICU at Wome & Infants

 


Someone must have told Abby to show up a little early to make a good impression. My water broke at 1:52am, and it was the very dramatic type of gush you expect to see on TV.  I could feel it coming and rolled out of bed to what sounded like a waterfall.  I weighed myself when we got into triage- I’d lost over 4lbs of fluid.  Though I was in the midst of contractions and had soaking wet pants, even then I found myself in significantly more comfort than I was for the majority of my third trimester J  So far, YAY LABOR!

Connor's first visit with Abby 11/12/2010

                                                     

I won’t get into the details of it, but my c-section could have gone better. I’ve had one before; I know what it’s supposed to feel like, and I felt WAY more than I should have.  Luckily, my awesome OB (who couldn’t perform the surgery since we went in early) and my recovery nurse, Daria, (whom Matt and I know form High School, of course, because it’s RI afterall!) took great care of me afterwards and got my pain meds to where they should have been all along.  Thank you Dr. Brousseau and Daria!

We get two basic questions from people:

1. How is she doing?

2. What does she look like?

How is she doing?  That’s up for debate.  As have many other HPE parents been told, Abby’s condition is not compatible with life and we should expect not too much more than a week with her.  It could be prolonged with machines and invasive procedures, but nothing could be cured.  Her symptoms would merely be managed for a period of time until she passes.  I know kiddos beat these statistics all the time, but in the case she doesn’t, I don’t want to put her through anything unnecessary.

Our plan of care at this point is for comfort.  We want Abby enjoy what time she has with us by experiencing the warmth of our skin as she’s held. 

 

Abby's Baptism 11/13/2010

What does she look like?  Well, I’ll be descriptive here.  I didn’t get to see Abby for quite a while when she was born.  It was well over an hour before I saw her, and I was worried.  Matt came into recovery to “prepare me” for what her condition was.  Initially, Abby was a little shocking to see.  Abby’s head was indeed large.  Not just slightly oversized; she has macrocephaly.  Her poor brain had so much fluid in place of brain tissue that the skull plates had actually shifted down to the sides.  This also pushed her ears lower, down close to her jaw line.  It makes her look like she has big sweet soft cheeks to me J  She has a severe cleft lip and palate, which have an effect on her nose.  It almost looks like she has three nostrils.  And here’s the biggie, the part that breaks my heart when I look at her.  Abby’s eyes are widely placed, and her right eye is swollen shut.  It looks like there’s a big swollen bruise underneath it, and her left eye is just closed with no globe inside.  The rest of her body, I should point out, is as soft and tiny and perfect as any other newborn you will ever find.

What I just described may seem devastating to you; I’m aware that someone described her as being “severely deformed”, which I don’t agree with.  But do you know what we call her?  Our gorgeous girl!  That’s what she is, in fact it’s the only words that even come to mind when I go to describe her.  She smells beautiful, and her every inch of skin is so soft to touch.  I can cry thinking about it right now, how beautiful she is when I look at her and how soft her skin is when I rub my face against it to kiss her.  Matt and I couldn’t give her enough hugs and kisses if we tried.  I could sit with her snuggling against my chest indefinitely. 

My beautiful Abby

I’m being discharged Tuesday morning, but we’re not sure when or if Abby will be giving up her diggs in the NICU.  Her nurses are fantastic, and we have a wonderful Neonatal team right now.  We’re still waiting for some tests to be officially diagnose her as having semi-lobar HPE (I believe they are also putting the MIHV label on it too).  The genetics team just ran a Fish (did I spell that correctly) and will now do a microarray to determine the cause of the HPE and see what this means for me and Matt having children in the future.  We’ll find all that out later in the week.

Thank you to everyone who sent flowers, food, cards and warm wishes our way.  We’re all very happy right now.  I’ll keep you posted when we have more concrete news about Abby’s condition.  For now Connor is still really excited to be her big brother.  He would just like to have mommy back home for a few nights!

Love,

Matt & DG