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.