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.

Thursday, December 16, 2010

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 :)

















5 comments:

  1. You are amazing and articulate. I think of you every day.
    Neil and i wish that this holiday season you may find peace and know how much you are loved. Love, Natalie

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  2. Natalie couldn't have said it better :) Also, you may not feel amazing but you LOOK amazing in that picture of you and Matt at the wedding. You are a beautiful person inside and out. Wishing you peace and sending you all love this Christmas and always. May Connor's smiles on Christmas morning take away some of the pain.... if even for a moment. Thinking of you all.

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  3. I don't know if I've posted or not My daughter gave birth to still born baby girl she named Hope three weeks ago. The baby was diagnosed with alobar hpe and my daughter developed preeclampsica and had to be enduced. Although I don't know your pain as a parent as a grandparent I do know your heavy heart feeling. The T-shirt sounds easy enough. May your heavy heart ease with time....

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  4. I love you DonnaGrace. You and your family are in my thoughts every day.

    Beth

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  5. You are such wonderful people! It has got to be so hard going through all that you are going through. I think you are doing so well, and yes you have every right to break down and mourn. Keeping you in my thoughts and prayers, and just so you know that Christmas is just about spending time with family and enjoying the spirit. :) HUGS!!

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