Tuesday, July 22, 2014

37 Weeks and a little honesty...

37 Weeks!  Call it whatever you want - term, early-term, full-term, whatever - we made it! 

We had our last growth ultrasound yesterday, and they're estimating that Abby is currently 6lbs 9oz (which puts her on track to be almost 8lbs at our August 11th due date). We were able to see her taking practice breaths and received confirmation that her tailbone and feet are very much up in my ribs. Oof. Not much else has changed as far as they can tell (there's only so much you can see on an ultrasound this late in the game), and the plan is to wait until I go into labor on my own - which they predict will be shortly before my due date (fingers crossed). We'll have appointments every week from here on out.

We had a fun weekend. The cube shelf we had in the nursery ended up being inadequate for our book storage needs, so we scrapped that idea and headed down to the Ikea in Cincinnati for something to replace it. Oh my goodness. Neither Jameson nor I could recall ever having been in an Ikea, and we were not prepared. That place is something. Amazing and efficient, but also bonkers. We had fun though, and ended up with a bookshelf we're really happy with. 

So much better!

And now, for some cathartic venting...

Disclaimer: I journaled this on Thursday with no intention of posting it.  I'm not particularly proud of it, as it's not all that positive, but I really needed to get it out. I planned on keeping it to myself, as I didn't think people would want to read a bunch of doom and gloom, but after re-reading it decided that maybe this is exactly what other people need to know about this point in our journey - that it's difficult and there are days when I just want to scream and cry and tear my hair out; days when I feel hopeful and positive and days when I do not. It's long-winded, but an honest representation of a lot of what has been on my mind. So here it goes...

Thursday July 17, 2014

As we draw closer to our due date, my anxiety levels are steadily rising.  While I am excited to finally get there, I am also extremely nervous.  Some of my concerns are related to actual labor (her head getting stuck, bleeding problems after our 30-week scare, etc…), but most of them actually have to do with what happens post-labor, once we finally meet our daughter.  

I have been hesitant to talk about the syndrome that the doctors have suggested Abby may have (Pfeiffer Syndrome) - partially because we haven’t been definitively told that that’s what it is, and partially because (after doing some research) it’s a pretty daunting prospect to be facing.  When we thought we were looking at Down Syndrome earlier in this pregnancy, I found a lot of peace in the stories from parents with kids with that particular condition.  Such has not been the case with Pfeiffer’s.  The more I learn about it, the more terrifying it seems.  The stories I’ve run across from parents talk about their kids having to undergo multiple surgeries to fix the craniosynostosis, mid-face underdevelopment, and shallow eye sockets associated with Pfeiffer’s - we’re not just talking about one or two surgeries here, but DOZENS before they reach adolescence.  They talk about their kids having difficulty breathing, progressively losing their hearing and/or sight, and having serious cognitive delays.  They also talk about the challenges of having to live in a horribly judgmental world, one in which their child’s syndrome is rarely heard-of, much less understood.  I want to smack my 20-week pregnant self for crying in fear over the possibility of Down Syndrome or even isolated craniosynostosis.  I would take either diagnosis in a heartbeat at this point.  (Jameson made a good point that we needed to go through those emotions then so we would be more prepared for what we’re actually looking at now). Occasionally I’ll even run across an article describing some forms of Pfeiffer Syndrome as being “incompatible with life” and I’ll completely lose it.  This pregnancy has been hard, sometimes very hard, but I can think of nothing harder than finally getting to meet our baby bird and then learning that we’ll lose her.  I already love her, I can’t imagine the pain of her being taken away from us.

As much as I do love Abby, I’m also a little afraid of her.  I’m afraid of what her condition will require.  One of the main reasons I was hesitant to have kids for so long was because I feared having a child with a complicated medical issue that would require us to all but live at the hospital - an “Extreme Makeover: Home Edition” kid.  No joke.  And here we are, facing that very possibility.  It makes me crazy to read articles about Pfeiffer Syndrome that discuss whether or not those afflicted will be able to have “normal” lives.  Forget normal, I don’t care about normal anymore, I don’t really even have the expectation of her living a “healthy” life, all I want right now is for her to be happy.  In fact, I think that was one of the only things I ever prayed for before getting pregnant or shortly after we discovered we were expecting: I just wanted our child to live a joyful life.  I still pray that she will.  

I also worry a lot about my ability to deal with others in relation to Abby’s condition.  I already dread people asking about my pregnancy, and cringe when well-meaning people start giving me advice based on their own experiences with their “typical” children.  What am I going to do once I have an atypical baby that random people want to come coo over?  If she does have Pfeiffer Syndrome, or something like it, her physical differences will be pretty noticeable.  How am I supposed to navigate the questioning looks and awkward comments?  I think I’d rather people be aware and informed, rather than ignorant and judgmental, but at the same time, I’ve never really been good at talking to people.  I’d rather just smile, nod, and deal with whatever I’m struggling with in private.  I worry about having to spend the rest of her life explaining her to people.  Explaining that yes, she’s different, but that’s ok, she’s exactly who she is supposed to be.  Sometimes when I start to feel overwhelmed by this prospect, I worry that it is because I’m really afraid about how I will react to Abby.  Maybe I’m the one that’s scared of how different she’ll look, and that it will somehow affect my feelings toward her.  What a horrible, superficial thing to be concerned over.  

Another thing that I’ve struggled with in conversations with others is the suggestion that it could turn out that nothing is wrong.  I understand that people are trying to be helpful and positive, but it is actually one of the more difficult sentiments to cope with that I’ve run into lately.  Is it possible that everything could turn out to have been a huge misunderstanding?  I guess.  I’d like to believe that miracles still happen, but in all likelihood, there will be some serious obstacles for us to face.  I find it much more helpful to look at the situation this way:  It is what it is and it will be ok.  It will be challenging, but it will be ok.  Anything other than that actually makes me more stressed out instead of less.

As the extent of Abby’s medical condition looms ahead of us, it has given me a healthy dose of perspective on becoming a parent.  There are quite a few things that might normally concern a new mom that aren’t even on my radar.  For instance,  I am not worried about having an intervention-free labor or it being in any way an “ideal” experience.  I am not worried about my post-delivery recovery or getting my pre-pregnancy body back.  I am not worried about changing messy diapers or getting up in the middle of the night.  I am not worried about my career or maintaining any semblance of a life outside of being a mom.  I’m really just not concerned with any of that right now.  All I care about is our daughter's health and giving Aberdeen a life that is full of love.  No matter what I am going through, she is going to need be loved and supported.  This means continuing to nurture my relationship with Jameson, and even more importantly, my relationship with God.  I am not always good about putting God first, but if I am going to be the best mom I can be, I will need to figure out how, as I’m pretty sure that His help is the only thing that is going to get me through this.


One last thing: Jameson's middle brother, Justin, painted this piece that we had framed for Abby's room.  I picked it up from the frame-shop on Friday and it reminded me that sometimes the things that seem to hold us down in life turn out to ultimately be what lifts us up.  I think that when I have days like Thursday, I should go sit in Abby's room, stare at this for a while, and focus on the fact that whatever it is, it will be ok.

The perfecting finishing touch for our baby bird's room.


  1. This is such a powerful post. Thank you for sharing. It's not easy to post true, raw feelings. We are sending you, Jameson, and baby Abby all our love. Your baby is will always know how loved she is. You are going to be a terrific mom!

  2. This is really beautiful, Bethany. You're exactly the mom that Aberdeen needs, and I'm so proud to be your friend.

  3. Bethany, thanks for sharing. I cannot begin to imagine the anxiety you feel, nor could I express words that would limit that anxiety. However, as a father of three, I do want to tell you one thing. What our children say, the joyful sounds they make, their actions, the way they look at you (except when they are really pissed off at you), all their mannerisms, quirks, and reactions to our love - these are the things that really matter the most. These are the things that will make you stronger and able to deal with all that she may go through. "It's what is on the inside that counts" is really not just a saying. To a parent, it's a reality.

  4. You have such a beautiful heart. So blessed that you let us in on your feelings and struggles. My heart and prayers are with you guys as you walk through the darkness. I pray God will reveal his faithfulness through you in even the smallest ways and I will join you in praying for a joy filled life for Abby.

  5. Bethany, thanks for posting such a heartfelt post. God has prepared you and will continue to give you everything you need. Special prayers weekly for you, Jameson, and Abbey. You are an amazing person and will be an amazing mother.