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.