Aaron's Day

This is part two of our son's story.  It is even longer than part one, but he deserves every word and more.  I don't ever want to forget a single moment that we spent with him and wouldn't dare to leave anything out here. These words are as much for me to remember his life as they are for me to share them with you.  We thought that once he passed, we would only get to spend 10-12 hours with him before it would be time to say our goodbyes and lay him in the arms of the gentle men from the funeral home.  Instead, we were blessed with twenty-two incredible hours with our little man.  In the time span of less than one day, our lives were forever transformed and we were graced with feeling all the love that should've lasted an entire lifetime.

Aaron was placed on my chest right after he was born so that Chris and I could see him.  (Chris even got to cut the cord like he did with both of his daughters.) I don't think there is any love in the world quite like the love that a parent feels for a child.  Even when that child appears less than perfect in the eyes of the world, when you are looking down at the life you created, all you can see is beautiful.  You might register that something is different and you take note, but it is just another part of the child that you love.

He was wrapped up in a hospital blanket and was sporting one of the hospital's hats (still didn't have all of our bags in the room at this point!!) We continued to hold him while everything from labor was finished and cleaned up.  They took his measurements (16.5 inches long) and brought in a scale to weigh him - he looked so chubby that we couldn't believe he really only weighed 4lbs3oz so the nurse weighed him twice to be sure! (Unfortunately, he wasn't a candidate for any kind of organ or tissue donation, but it is a comfort to know that the transplant organization was contacted.)

Then it was time to give our little man a bath and get him ready to meet the family.  (Somewhere along the way, Chris had managed to communicate to our families about what had happened in the last hour and they were able to head for the hospital.) We didn't get to do the baths for either of the girls, but knowing that this was going to be the only bath that Aaron ever got from Mommy and Daddy made it such a special experience that I will always be grateful we got to share with him.  The nurse stepped out and we had all the time in the world to clean him off, admire his long brown hair (seriously, it was almost 3/4" long!), cover him in lotion (though I have to admit, I had forgotten how little it takes to lotion such a tiny body and he may or may not have ended up with a bit much!) and get him dressed.  He got to wear one of those impossibly tiny newborn diapers and a special "Little Brother" onesie that we have had just waiting for nearly three years to be brought out for our firstborn son.  (Since none of the ultrasounds had ever been 100% positive on gender, we decided a few days ago to pack some boy items just in case!)  We covered his little head with fresh gauze and put on one of the hats that his Mommy made for him (his Mommy can admit that while they were certainly not crochet-perfect, there was one that fit his tiny head just perfectly).  Then we swaddled him in a soft little blanket that we picked out nearly five years ago when we discovered that we were expecting Tori...we were so excited when we first found out I was pregnant that we bought an outfit and blanket for each gender.

After Aaron was all dressed, Chris headed out to find those sweet big sisters so they could meet little brother.  They came in so enthusiastically and couldn't wait to jump up on the bed with Mommy and Baby.  We explained right away that we had gotten a surprise baby brother instead of a sister and although Tori had been adamantly opposed in the past to a baby brother, she didn't seem at all troubled by the change.  The girls really didn't ask many questions, but the questions they did ask were so very very sweet.  Tori wanted to know why he was sleeping, so we explained to her again about the baby's boo-boo, how he had died and gone up to Heaven to be with God.  Abby kept pointing and asking, "Seeping? Baby seeping?"...then "Shhh.  Momma Shhh!!  Qiet! Qiet!" She may not be terribly big, but she was awfully determined that we were going to act appropriately around her new baby brother!  While it was just the five of us, a local priest came in to say a few blessings and offer his sympathies. (The nurse who had been with us through the labor was also a Catholic and called her own priest to come over for us.)

After thoroughly checking him out and discovering the new baby dolls he brought for them, Tori was ready to bring her "friends" back to meet her brother.  She was determined that Auntie Julie should be first, but we convinced her that maybe we should let Mamaw meet Aaron first.  So the girls and I walked out to the lobby to meet my Mom and bring her back.  From that point on, Tori pretty consistently introduced her brother as "Baby Karen" despite a bunch of reminders that his name was Aaron (at some point, I'm pretty sure she decided to just be silly and ignore what we had to say...because she's almost four and that's kind of what they do).  After Mom got to spend some time with her newest grandson, we let Tori choose who came next (truthfully, that way we didn't have to choose order!) and each of the aunts and uncles got to come say hello to her "Baby Karen."  Tori and Abby served as little tour guides and were delighted to get to walk through the halls to help bring everyone back to meet her baby. 

When everyone had been in to meet our son, my sister-in-law (who also did our maternity photos not so very long ago) was ready to get some absolutely precious pictures of us and our new baby.  I said it before with our maternity photos and the same is true of our newborn pictures...she did such an incredible job of showing just how much joy we all felt for this little life even among all the sorrow.  I honestly don't think I will ever be able to find words that will accurately describe just how much these photos mean to me; she took the time to send us a few tonight so I could share them with those who were eager to meet our little boy and I can already get a sense of how much I will cherish these pictures for the rest of my life.  As I type this, it has been only eight hours since he left our arms and seeing his little face pop up in my email tonight meant more to me than words can describe.  I could sit and just stare at his perfect little lips and tiny smushed-up nose for hours and having the pictures to let me do that is absolutely priceless.

By the time we finished with our visits and all of the photos, it was past 11:00pm and while the girls were clearly getting tired (Tori even climbed into the corner where we had all of our bags and sort of crashed on top of them for a few minutes), they were so well-behaved and so excited to meet their brother.  As a mother, I could not have been more proud of them and how well they have handled everything.  We got ready to say our "good nights, love yous and sweet dreams" and get our hugs, kisses, nose rubs and head-butts.  As Tori climbed up on the bed, she took my face in both of her little hands to tell me, in her most grown-up little voice, that she was very sorry but it was time for her to leave right now and she would see me tomorrow. 

After that crew headed out, we had a few hours to eat some of the OB floor's famous turkey sandwiches and drink the Coke that our nurse specially requested for us at nearly midnight (they typically have only Sprite and juices on the floor but since I had initially asked for one, she made sure to go find four of them for us).  After a little relaxing, we got a wonderful late night visit from one of my closest friends who came to meet our little boy and check in on us. 

We knew we wouldn't sleep much the rest of the night because we honestly didn't want to miss one second with him and I don't think he left our arms for more than a moment from that point on.  So we got in quite a few hours of snuggling and watching some particularly awesome late night TV...by that, I mean some "Home Improvement", "George Lopez" and a little "That 70s Show."  We did get to curl up in the bed for an hour or so to take a quick nap before breakfast though.  Shortly after that, another friend of mine came up for a visit on her way to work and dropped off an amazing keepsake pendant kit for us - turns out the timing was perfect because it had just arrived in the mail the day before!

We initially thought we would only get to spend about ten or twelve hours with Aaron and had been expecting to say our good-byes early in the morning.  As it turns out, the hospital really truly recognizes the value of the time that parents get to spend with their baby and placed absolutely no official limit on our time with him.  So we spent the morning snuggling and making all of our keepsakes (handprint impressions, our pendant kit, footprints, and a plaster mold of his tiny little fingers).

My doctor came in to check on us at about lunchtime.  She wanted to know what name we had settled on and we shared with her (because we hadn't known what we were going to name him when she left after the delivery); I had completely forgotten that her own son's name is also Aaron.  She asked how we were doing and gave us our prescription for a really really high dose of folic acid, which I will be on for the remainder of my childbearing years.  (While it isn't a guarantee that it will prevent this from happening again in the future, it would at least significantly reduce the recurrence rate.)  She gave us both hugs and asked to see us in her office in a few weeks.

We talked with the care coordinator/grief counselor shortly after that and decided that we would call her again at 3pm so she could make contact with the funeral home.  I'm not sure I would have ever really been ready for that step, but it seemed like setting a time was the best thing for us to do.  Honestly, we spent most of that time curled up in my tiny hospital bed, dripping tears on Aaron's tiny little hat while we told him all the things we thought he most needed to hear.  At 3:00pm, we called to let her know that it was okay to start the process.  We filled out the paperwork that needed done so she could call the funeral home.  She also made an extra set of tiny footprints for us and then stepped out to wait for the funeral director to arrive.

We took this time to get Aaron ready for the next step in his journey.  We gave him a fresh diaper, changed the gauze on this head, trimmed some of that long brown hair, and changed him into the outfit that we wanted him to wear.  Neither of us were particularly concerned with what babies are "supposed to wear" when you bury them, because truthfully, you just shouldn't have to bury a baby.  So we chose the outfit that we picked out so many years ago that we would've brought our first son home in...a little baseball onesie that said "Daddy's Home Run Hero" and some little red and gray pants.  We left his tiny feet bare because none of the rest of his family likes to wear socks...so why would he? We wrapped him in the blanket that I made and the blanket that my mom made and just held him tight until the funeral director arrived. 

He came in and talked to us for a few minutes, then stepped out to give us a little time.  We said a prayer together, just the three of us.  We told him for the hundredth time how much he is loved and always will be.  We covered that sweet little face in kisses.  Then we had to tell him Goodbye.  We handed him to the care coordinator who laid him in that little bassinet and then they left.

To see your child go through a door and know that you will never feel his weight again in your arms and never get to kiss his tiny little face is a feeling that I'm not sure I even want to describe.  It's an important part of the story and I don't want to leave it out, but even sitting here typing it is almost more than I can bear.  It is to feel the very physical pain of having a piece of your heart leave your body and being powerless to stop it.  Believe me, I wanted nothing more than to jump from that bed, tear him out of that little cradle and never ever let go again.  In those moments after he left, my arms felt so utterly empty.  Chris brought me the blanket that we'd had him wrapped in and it was at least some comfort, but I'm pretty sure that empty feeling is here to stay for a while.  Despite the fact that we have been trying to prepare for this for months, it is impossible to prepare for that kind of pain.

The door closed behind them and all we could do was sit and sob for a little while.  What else makes sense in that moment? Once we got calmed down again, we began to pack our things and get ready to come home.  Once again, the care coordinator was there to help us and she even 'overlooked' the rule about being discharged in a wheelchair...honestly, being wheeled off of that floor with no baby in my arms would have nearly undone me and I think she understood that.

We made it home and were greeted by our beautiful little girls, a very enthusiastic dog, a very stressed-out cat, my mother and my brother-in-law.  Tori immediately wanted to know about the baby, so we reminded her that he had gone to Heaven and didn't get to come home with us.  Thankfully she was satisfied by that and went on with whatever she was doing.  Abby saw the blanket I had held on the way home and asked "Baby in nere? Baby in nere?"  So we had to show her that it was just his blanket and told her about the baby being in Heaven too...I doubt she really grasps it, but that seemed to satisfy the matter for her.

Tori made sure to let my mom know that "Mommy and Daddy are home now, so you can go ahead and leave."  So we got the girls dressed, headed to FedEx to drop off our info for the Duke study and decided that we were all going to Applebee's for dinner.  To be sitting in a restaurant having dinner just 24 hours after giving birth and just three hours after watching your baby be wheeled away by a funeral director is an almost absurd experience, almost like a bad dream from which you hope to be awakened any minute. We didn't wake up though; instead we came home, hugged our girls tightly and put them to bed.

Chris headed to the garage to make a little wooden car to have put in the casket with his first-born son (when we were expecting an Aurora, he had been working on her music box) and I sat down here to record what has happened in our journey during these last 32 hours.

Despite the pain, despite the tears and despite that nagging empty feeling...I still know that we were blessed by the time that Aaron Michael was in our life.  I have no regrets about choosing to carry him for as long as God allowed, even though that meant the pain of having to say goodbye.  Even when the tears have fallen or the sobs escaped, I still felt an indescribable joy in the blessing of carrying such a perfect, innocent little life. He will always be our first-born son and will always be in our hearts. 

Outshining

I know I haven't been writing very often; some of that is because I don't have a lot of quiet time for it (unless it's 1:00am and I'm the only one awake, kind of like right now) and some of it is simply because I'm having a hard time finding the right words these days.

We've got just thirteen days left until our induction is scheduled on 3/4.  Even as I sit here now, and I got out of bed solely for the purpose of trying to put some thoughts down, I'm still not sure exactly how I feel about that fact.  

There is, of course, the part of me that is just like any other mother - so excited to finally meet the life I've been carrying inside of me for the last nine months.  That part of me can not wait to feel the joy of finally cradling her in my arms, holding those tiny little hands, counting all ten tiny baby toes, introducing her to her older sisters and snuggling her tight to my chest. 

There is also the part of me that is so very scared of labor, just like I was with both of the other girls.  There is a very normal fear that comes with it and I think, at one point or another, most moms would really just prefer to skip over labor and delivery and get right to that whole "holding your new baby" part.  That's kind of where I fall right now.  Don't get me wrong...I had absolutely beautiful labor experiences before and wouldn't change a thing about either one, but I had the same feelings in the weeks leading up to them. 

The rest of me is filled with anxieties about all the factors that are unique to Aurora's birth and life.  I know that we have done as much planning and preparation as we could possibly do.  I know that no amount of anxiety and lost sleep is going to change a thing.  I know that there comes a point when I really do have to just let go and trust that things will happen as they are meant to.  I also know that we have an overwhelming amount of prayer and support to help us through whatever happens.  And I know that when all is said and done, we will still have had the opportunity to celebrate the life of one very special little baby.

That special little life is what makes every second of pain, anxiety and fear absolutely worth it.  I have no doubt that the joy, love, and grace that she will bring to our lives will far outshine all of those other moments.

Unconditional Love

Happy Valentine's Day! I've been wanting to put together a post with some of the maternity photos that my sister-in-law did for us a few weeks ago and today seems like the perfect day.  Is there any love more pure than that of a mother and father for their child?  :)

I am so happy that we were given the opportunity to have maternity photos done and would absolutely recommend them for other mommas, especially those facing a similar diagnosis.  They are not only beautiful but she did such an amazing job of capturing all the happiness and joy that co-exists with even the most difficult moments of grief that we've been working through.

   The bracelets in these two images were made by a woman whose daughter Eden was born sleeping after 38 weeks of a healthy pregnancy. "Eden's Wings provides a tangible symbol of healing, hope, and remembrance to bereaved parents through our handmade bracelets." 

You can visit her site at http://edenswings.blogspot.com/

We got so many beautiful images and as much as I would love to share them all, I'm just not entirely comfortable sharing the ones with our full faces or my other girls in them.  For the same reason, I also want to say that my sister-in-law gets total credit for the awesomeness of the images but, with her permission, I am choosing not to share her name or the name of her studio.  Feel free to contact me (OneAngelsJourney@gmail.com) if you know that you live in our area and would like some more information on getting in touch with her. 

Mommy Guilt...in the middle of the night.

It's just past midnight and I can't sleep.  Even though we went to bed almost two hours ago, here I am wide awake with a mind that just refuses to give up and get some rest.  At this point, the only thing more irritating than being awake when the rest of my house is quietly slumbering is the fact that I'm not exactly sure why I'm still awake.

After reading all the news stories I could handle on my phone's tiny little screen, I decided it was time to just get up and see if I could figure out exactly what is on my mind.  I'm not sure I'll discover anything terribly important, but at least maybe after I get it all out, I'll be able to get some rest.

We had a doctor's appointment yesterday that went reasonably well.  The last week hasn't gone especially well, pregnancy-wise, and I was pretty anxious going into the office, but overall things are going as well as can be expected.  The doctor ordered a non-stress test as a precaution and, while it didn't necessarily ease my mind, she seemed to think it went okay. So there isn't anything specifically baby-related that's eating at me.

I know I'm a little peeved that I forgot to pay one of our bills on time and got hit with a $35 late fee..but that's not the first time it's happened so I sincerely doubt that is the cause of this ridiculous insomnia.  I have always tended to freak out a little over stupid things like that, especially when there is no good reason for me to have forgotten, but again, not that big of a deal in the grand scheme of things.

Chris and I also talked a lot tonight (before his body finally gave in and fell asleep) about some of the random things that have been frustrating me lately.  I know some of it is just the normal hormonal grumpiness that happens when you're 38 weeks pregnant; unfortunately it's just amplified by about 1000 given all the factors that have come into play with this particular pregnancy.

To be fair, some of the irritability is totally justified (ie- when people say one of the countless stupid things that people tend to say when they just don't have anything useful to offer) but some of it is pretty irrational.  I suppose that at least I can recognize when I'm being ridiculous and tend not to snap back at those times, but I have found myself having to walk away from more than one conversation simply because I wasn't sure what was going to come out of my mouth if I didn't.  I do know that people mean well and want to help, but when I get in this mood sometimes I just wish everyone would leave me alone so I don't have to try to respond tactfully.

I actually think my role as a mother is probably pretty near the top of my list of "funk factors" right now.  With everything that is going on in our lives and fighting the constant battle of my own emotions, some days I can't help but feel like a complete failure as a mommy.  There are quite a few days where we will sit in our jammies (or Cinderella gown if you are Tori), watch movies all day and do nothing resembling anything educational.  There are days where I know I am short-tempered and don't give them the patience and kindness they deserve.  There are days where the only thing that I really want to accomplish is to get back in bed.  On those days, I hate myself and I hate the fact that my kids don't have the mom that they should.  It's not that I actually climb back into bed or that they are ever mistreated, but I can feel myself falling far short of who I want me to be.  My resolve is always "Do better tomorrow."  Sometimes, that works and there are days where things are wonderful and you would never know that there was anything out of the ordinary in our household.  Unfortunately, that isn't always the case.

This is one of my biggest frustrations with this entire situation.  It doesn't just affect me or Chris or the baby...it affects Tori and Abby too.  (For the record, I know it also affects our parents, siblings and extended families but I am no mood to further contemplate that right now.)  As much as we try to strike a balance between shielding them from this entire awful reality and trying to use it as a learning opportunity for dealing with life, emotions and loss...sometimes it feels like we couldn't be doing a worse job of finding that balance.  I know that it isn't entirely reasonable to expect that the girls wouldn't be affected by all of this, but it seems like there would be some way better than just stumbling along blindly and praying for the best. 

We are human and I know we will make mistakes, but it is such a helpless feeling to know that you aren't doing what you want to do or being who you want to be.  I want so badly to be in control of all of this and to be able to balance my own grief with that of my husband and the needs of my children.  I want things to be "normal" at home even in the midst of chaos, but when I look around and see that things are still often chaotic no matter how hard I try...it's hard to accept that I am not nearly as "in control" as I would like to be.

(As a side note, I realize that this post got really long and I apologize.  I considered cutting out most of my thought process until I got to the last few paragraphs - because when the tears started falling, it was pretty clear what was bugging me tonight - but it was important for me to walk through it.  Plus, I timed how long it took me to read what I wrote -yes, I am that crazy sometimes...and since it was just about three minutes, I figured that anyone who cares enough to follow the blog would care enough to spare three minutes.)

The Gift of Milk

Those of you who know me also know that I am a huge advocate for breastfeeding.  Both of our girls nursed until about 13-14 months and received nothing but breastmilk for the first six months of their lives. It's important to me for a lot of reasons, but primarily because there is no doubt in my mind that it is the best nourishment for a baby to receive.  (Let me also say this so that I don't offend or get attacked, I understand that there are legitimate reasons that some women are not physically able to breastfeed or why they may only be able to do so for a short time.  This is why formula exists and that's fine.)

After I had Tori, I was blessed with the ability to have a ridiculous abundance of milk.  By that, I mean we were able to donate several hundred ounces to the Indiana Mother's Milk Bank (more on them below) and Chris still ended up having to throw away about 400-500 ounces because it was too old to donate (I have no idea exactly how much he threw out because I didn't want to see it and made him promise not to tell me...since then, I've realized that I probably should have just made a private donation to a momma somewhere.)  With Abby, I always had plenty for her but since I wasn't working at the time, I didn't end up with quite so much left over and ended up donating about 100oz to mom in my hometown (for the record, it was not a positive experience and I urge caution if you do choose private donation).

This time around, my body has no way of knowing that Baby Aurora isn't likely to need my milk.  One of the cruel realities of mothers that lose an infant at or shortly after birth is that our bodies don't get the memo and will go right on with the original plan of producing milk for the baby that should need it. That often leaves us mommas facing the physical discomfort of a chest full of milk on top of the grief that we already feel.

Instead of wasting such a beautiful gift, my plan is to pump and donate milk for as long as my body will cooperate.  I know that the odds of being able to maintain a milk supply long-term aren't terribly high, but I do know that there will be milk.  And I know that there are babies in NICUs who need that milk.  That's where the Indiana Mother's Milk Bank comes in.  "IMMB provides pasteurized donor human milk by prescription or physician order to hospitals and outpatients throughout Indiana and the Midwest.  Premature and ill infants in hospital neonatal care units are our highest priority." (http://www.immb.org/)  They make donation incredibly easy and do great work in getting that milk to where it needs to be.

Unfortunately, the bags needed to donate milk can become expensive very quickly so when I first decided that this would be my plan, I contacted the Honeysuckle Company (http://www.choosehoneysuckle.com/) to see if they would be willing to help us.  I had received a sample of their bags with Abby and was very impressed with their quality and customer service; I was not disappointed this time around.  I immediately got a response from the president of the company who said that they would be more than willing to send us a packet of bags to get started and to simply let her know if we needed more in the future.  I have been so touched not just by her generosity, but in her sincerity in offering her prayers and kind words to us in the weeks that have followed my request. (As a side note, they also have baby food bags available for storing homemade baby food!)

Even in the face of something so painful, it is incredible to see the blessings that can be found if you just take the time to look for them.  There is obviously the blessing that will come to the babies who will eventually receive the milk.  But there is also the blessing that we have received in being able to share our story, which reached a whole new audience when our story was shared on Honeysuckle's Facebook page, and the blessing we have received in feeling the love and generosity of strangers who want to help us along in our journey.

A Sister's Gift

Chris and I have long had a name picked out that we had always thought would belong to our third daughter.  It's one of the few that we have agreed upon and even shortens to a nickname that would go perfectly with her sisters'.  So when we first found out that we would be having a third child, we knew that if we were having a girl her name was covered.

Before we knew this baby was to be a little girl, we just used "Baby" anytime we talked about the baby in Mommy's tummy.  This included nightly in our prayers with the girls; then one night, Tori stopped me and said "No, no, no!!! Her name is Aurora!!  You have to call her by her name and her name is Aurora!!"

Aurora is not the name we originally had picked out and wouldn't necessarily have been one on our list, but Tori has remained adamant that this baby's name is Aurora.  If she catches me slip up and say "Baby," she will almost always correct me.  If we ask her about the baby's name to see if she has changed her mind, she has remained consistent that little sister's name is, in fact, Aurora (except for a time or two when she told me that it should be "Cinderella"...usually when she is wearing her Cinderella gown).

Given her insistence, Chris and I thought that we should maybe consider Aurora as a name.  We had all but reached a concrete decision, but the other night I started questioning it and wondering how I felt about choosing a name for our angel that we wouldn't normally choose for a baby.  So Chris and I sat down to talk about it...and that man never ceases to amaze me.  He said it so simply, but could not have said it more perfectly:

"Tori isn't going to be able to play with her sister and she isn't going to be able to teach her to walk like she wants to.  There are so many things she won't get to do...but she can do this.  She can give her a name."

I got tears in my eyes then, just like I did now as I retype his words.  There could not have been a more perfect way to sum things up.  So between the wisdom of my husband and the enthusiasm of my oldest daughter, they have picked a beautiful name for our beautiful angel.

Aurora.

"We can only appreciate the miracle of a sunrise 

if we have waited in the darkness."

~Author Not Known~

Beneath the Ice

The best way I can think of to describe the way I'm feeling is to have you imagine that you are walking across a frozen lake.  You walk cautiously, but continue to move forward and occasionally pause to breathe in the quiet beauty surrounding you.  Suddenly, the ice before you opens up and you find yourself falling through.  Before you realize what has happened, you are underwater and can do nothing but struggle to bring your head above the surface once again.  This is my attempt to get back to the surface.

Things have been pretty uneventful lately and I have found myself feeling almost at peace some days.  Yesterday, however, we were traveling to see family and about a mile from our destination, we found ourselves sitting at an intersection waiting for a funeral procession to pass.  I found myself quietly sobbing in the front seat as the hearse passed and I realized that all too soon, we would find ourselves following the car carrying our daughter.  Thankfully, the girls were occupied by a DVD and I had a short drive to pull myself back together, but I know by now that once I start crying, the tears will wait just below the surface until I finally deal with it.

So here I am and although I don't usually find myself in tears when I'm writing, I can't help but choke back the sobs.  It isn't that I had forgotten about the funeral or that I am in denial about our reality right now, but staring down the timeline for taking your child to the cemetery is painful in a way that I can not even describe. In all of the discussions and planning, I have been working so hard to handle the practical details that I haven't really let myself walk through what that day will actually look like.  This is why. I don't want to.  I don't want to walk that path more than once.  Ever.

Among the tears and pain right now, I also feel tiny little hiccups just above my left hip and what I assume is a little butt pushed firmly into my rib cage.  Maybe she hates it as much as I do when I cry and is offering her best distraction.   It's almost like that's her way of letting me know that, for now, she is still here with me.  I am grateful for those reminders of her life; I am grateful that she is such an active baby and frequently makes her presence known.  I am grateful that I've been blessed to have nine months with her and pray that she will be content to hiccup, wiggle, kick and punch right where she is for the next four weeks.  Because I will never actually be ready to say goodbye.

10,000

Wow - today, the pageview count for our blog surpassed 10,000 views (as of right now - it's 10,555).

I have no idea how many individual readers that translates to, but I do know that I never expected so many to be following our story and to read the words I've written.  It seems appropriate though that today was the day we hit such a milestone, because I've been doing a lot of thinking these last few days about all the support, love and encouragement that we have received in the last four months.  It has been so humbling and so incredibly uplifting.

It baffles me that the time has gone by both incredibly quickly and shockingly slowly.  I can remember the day of our ultrasound like it was yesterday and the crushing emotions that we experienced in the days that followed are never far from my mind.  At the same time, it's hard to believe that we're just four short weeks away from delivery now and are putting together the final pieces of the preparations to meet our little angel.  

Through all of this, I have had so many people tell me how I'm such a strong person and with what grace we've handled these last four months.  The truth is...a lot of days, I don't feel strong and on those days, I would describe myself as anything but graceful.  Yet, here we are...still standing, still facing each day, still preparing for all of the practicalities that need our attention.

I honestly don't think our personal strength alone would have gotten us to this point. We have had so very many who have reached out to us and many more who have held us up in prayer.  We have had loved ones and strangers alike who have opened up their hearts to hear our story and to share their strength with us.

We have been positively blessed that everyone we have encountered so far on this journey has been nothing short of amazing.  My family and friends have been there every step of the way.  Our doctor and her entire office have shown us nothing but love, support and compassion.  The funeral director and counselor are some of the most sincere and kind-hearted people I have ever met.  The priest who will be handling our baby's funeral put us so much at ease and made sure we knew that he would do anything he could to help us say goodbye in the way that we want.  Complete strangers have offered their support and kept us in their prayers. Acquaintances that we haven't talked to in years have reached out just to let us know that they've been thinking of us.

I will never be able to say enough thank-you's to all of those who have been with us on this journey and I know this won't be the last time I get the urge to reflect upon it.  But as I sit here tonight, thinking about all of those who have been walking with us...I can't help but feel overwhelmed by such a blessing in the wake of such sorrow. 

Doctor

I had a really great post written in my head last night while I was working...vacuuming is actually a great task for thinking.  Unfortunately, by the time I sat down today to write it was completely gone.  I can not even remember the topic - all I remember is that I was debating with myself about whether or not I really wanted to write it, but decided that it would be another one of those that would be really helpful for other mothers down the road.  Hopefully, it'll come back to me sometime.

In the meantime, I've been thinking a lot this week about how blessed we are with the doctor who has cared for me and all three of our children during and following pregnancies.  We had an appointment last week and it just further emphasized how fortunate we are; we've always known that my doctor and the staff in that office are a good fit for us, but I don't think we really got a chance to appreciate it fully until this time around.

I have always appreciated that Dr. N has a very no-nonsense approach to care: she doesn't waste my time with weird chit-chat but she has always taken the time to answer my questions.  She has also always been very receptive to accommodating my preferences with each pregnancy (basically, a "leave me alone until I need you" approach to childbirth).  In the five years that I've been seeing her, Chris and I have both come to value her very highly and trust her with my care and that of our children.

What has been so touching with this pregnancy is that she seems genuinely sad for us, not just as patients, but as parents and as people.  She comes in and sits down to talk with us at each visit.  She made it very clear in an early appointment that they did not intend to treat this any differently than any other pregnancy; we were still to call if we had concerns and not hesitate to come in if we felt the need.  I don't even know if she realized how much that simple sentence meant to me and how much I needed to hear it at the time. 

At last week's appointment, through chatting with one of the receptionists, we learned that the office is going through a lot of changes - retirements, departures, hires, leaves, etc - on top of the fact that they are a busy place to begin with.  You wouldn't have known it from our visit. . . Tori has been asking to see her baby on the TV screen again, so I asked Dr. N's fabulous regular nurse (who we have also gotten to know in the last five years) if it would be possible to squeeze in a sneak peek on the ultrasound. She replied with "There are just some things that we are never too busy for and that's one of them."  So Tori and Abby got to see baby sister on the screen...she was apparently messing with us because she had one little arm across her face so that all you could see was eyes peeking out.  Too cute.

It's a shame that not everyone is able to receive such incredible care at a time when it really can make all the difference.  I have seen so many other moms who have said that their doctor didn't explain the diagnosis, didn't support their decisions, declined confirmation ultrasounds, encouraged terminations when they weren't wanted and made these grieving mothers feel that the lives of their unborn children were simply not worth their time.  There is no excuse for that.  If you don't feel that your physician is working for you and doing what is in your best interest...find a new one.  You deserve that.

Powerless

It's interesting to me that I actually wrote most of this post about a month ago when we were going through a run of particularly bad days...I had been waking up at all hours of the early morning and couldn't get myself back to sleep.  I put off editing and posting for a few days and by the time I got to it, that period had passed and things were looking a little better.  So I just left the post in draft form because I knew I would cycle back around and the feelings would once again be relevant.  And here we are...at least I'm a little predictable, right? 

I have found myself wide awake at 4:30am several days this last week with such intense anxiety that there was no way I was getting back to sleep.  Not really much to do at 4:30 in the morning with your heart in your throat, no cable and two kids who are still sound asleep.  (Another downside is that by the time Chris gets home, I'm ready to go comatose on the couch!)

I haven't had any terribly upsetting dreams and there hasn't been anything specific that has changed recently.  We've been working this week to get funeral arrangements in place and even though that was difficult, it should be something of a relief to have it taken care of.  That is one of the most frustrating things about this - I can not manage to pinpoint exactly what is causing me to wake up in such a panic but I keep thinking that if, maybe I can figure it out I'll be able to talk myself out of it.

Unfortunately, I think that all of those normal little life stresses combine with the really big stress to become almost overwhelming.  I constantly feel like I am forgetting to do something or that there will be some terrible surprise bill in the mail that I forgot to account for.  Those of you who know me personally also know that I prefer to be a pretty organized person, but lately it feels like things are completely out of control.  And to some degree, they are...we didn't have any control over the baby's diagnosis.  We have since been able to take control of our decisions regarding her life, but still, those are in reaction to something that we had no part in.

I think that feeling of being powerless or helpless is part of what is going on right now (again, this is one of those things that I don't really think I realized until I sat down to write because this isn't really the direction I had planned to go with the original post).  We get so frustrated because this whole situation affects every aspect of our lives and we know that we will never be the same again.  We know that it will always affect the girls, because they will always have a sister that they won't really be able to remember.  We will all go on living and the pain will lessen, but we will always remember that we lost a child.  You can't go through that and not come out a different person; it's not possible.

What Kind of Choice Is That??

It's been two weeks since Emilee's death and that's given me a lot of time to think about a lot of things.  It's also given me the time, against my better judgement, to read some of the other blogs and comments that have been posted regarding Emilee, Leila Grace, anencephaly and suicide.  I will never cease to be amazed at how, from beneath the cloak of anonymity, some people will say the cruelest, most heartless things I have ever seen or heard.

I will only briefly address those types of people, because I don't honestly know that I can say anything that will heal whatever deep hatred or pain that they are feeling.  I can only say that I hope one day they will realize the sorrow they cause others with their own despair and begin working toward healing themselves.

More on my mind have been the comments I've seen where well-meaning people have said something to the effect of "If only her family had known the pain that choosing to continue carrying her baby would have caused her, they would have urged her to reconsider."

I want to be very clear here... the choice given to a parent when they find out that their baby has a fatal birth defect is this:  "Your baby can die now or your baby can die later."  Sound harsh?  That's because it really is.

Whether the parents choose to carry the baby to term or choose to terminate, the end result is going to be devastating. The pain that Emilee was feeling, the pain that all of us who have been in her shoes feel...that's the pain from losing a child.  It is not a pain specific to whether we choose to carry to term or whether we choose to terminate. Both options are heart-breaking because either way, all of the hopes that we once had for the little life growing inside of us change. We don't get get to dream about watching our babies grow up, get married and have babies of their own...instead, we are left hoping that we get at least a few precious moments of life to gaze into those little eyes or feel the squeeze of tiny fingers on our own.  That is the pain we face.

If you talk to a community of moms who have felt that pain...rarely will you find one who regrets her decision to carry to term but you will find many more wishing that they had decided not to terminate. (I am not, by any means, saying that all will regret their decision but I have seen more than I can count that I have said "I wish...")

I hope that if someone in your life is unlucky enough to have to face that "choice" that you will support them no matter what they decide.  It is not your job to talk them into one or the other...unless you are a parent of that child, you don't get a say.  At the end of the day, those parents need your support...not your opinions, not your criticisms and certainly not your judgement.

Making Arrangements

I finally called the funeral home yesterday.  A little over a month ago, my friend Courtney recommended several in the area and had really good things to say about one in particular.  It's taken me this long to call them.  (Honestly though, when you think about it...how eager would you be to make that call if you found yourself in my shoes?  Exactly.)

I was amazed at how compassionate and incredibly kind the man on the other end of the phone was.   I know in that particular line of work...you should expect kindness and compassion, but I'm fairly certain that isn't always the case.  It's a family owned business that has been in the community for nearly 65 years and is currently operated by two brothers and their children.  Honestly, just reading the biographies on their website was touching - they consider their profession to truly be "a calling to the funeral ministry." 

I started out by explaining our situation, which I managed to do without choking up too much, and he expressed his sympathies.  Then he wanted to make sure I knew that they do not charge any fees for children's services and we would only need to worry about arrangements for a plot and burial.  He let me know that he would be praying for us, and since he is also the pastor of a nearby church, he would be asking his congregation to lift us up in prayer also.

There have been only a few times lately when I have been so overwhelmed that I can't make it through a conversation without tears, but this was one of them.  To hear the compassion and genuine sadness in his voice for the loss of our child and to know that they are so sincere that they would donate their services to bereaved parents, I couldn't help but be overwhelmed. 

We have an appointment set for ten days from now - sooner would probably have been better but with three different schedules to consider, it will be soon enough.  The plus side is that it gives us a more focused timeline for finally making some of the decisions that we've been putting off.  I know that I'll feel better once we finally have a plan in place, but actually working toward planning a funeral service for your child is heart-wrenching.

There are so many questions, so many details to put into place and you want things to be just right, but what does that even mean?  This isn't the way things are supposed to be.  Funerals are supposed to be for your 92 year old grandma - someone with a favorite song or flower or poem.  Someone who has had an entire lifetime for you to remember.  You are supposed to be able to tell stories about all the sweet, crazy, funny things she's done in her 92 years.  You aren't supposed to have to bury a baby who barely even got a start at life.  You aren't supposed to have to bury your children at all...this isn't the way it's supposed to work.

  

A Hard Battle

It's almost funny how many posts I have started, but have yet to finish...it's not that I don't want to write, it just seems that I'll write just enough to feel a little better then I lose motivation and leave it for another day.  Fortunately for me, this entry pretty much wrote itself entirely in my head while I was trying to fall asleep today.  What that told me was that it was clearly what I was meant to write about.

I had a conversation with a coworker recently about a client that she knew from high school.  She remembered that when she used to know her, the girl was almost always mean to everyone around her; it turns out that the girl had been sexually assaulted repeatedly by her father for most of her life.  No wonder she wasn't a terribly pleasant person - her life at home was essentially hell.  But for those who knew her only peripherally, you just saw the hatefulness that she put out there for others to see.

That got me thinking about how what we put out there for others to see can be so very different from what we are actually feeling inside.  In that young girl's case, she probably was angry inside...but she was likely also scared, ashamed, humiliated and broken.  What about others that you encounter in your everyday life?

That frustrated mother at Wal-Mart who just snapped at her kid for smashing the bread? - Maybe her husband just left and she is struggling to juggle everything by herself.

That old man in front of you in line at the grocery store who's making you late for work because he's telling the clerk all about the dog he's buying food for?  - Maybe his wife passed away recently and he's got no one else to talk to.

That kid who is throwing his food on the floor at the restaurant and having a complete meltdown?  - Maybe he hasn't gotten much sleep lately because his parents are always fighting in the bedroom next door.

It is so easy to roll your eyes at that mother, or sigh at the man in front of you, or give hateful looks to the noisy kid...but instead, take a minute to take a deep breath, give each one a sincere smile and thank God for the blessings you have in your life.

For me, right now, I probably look pretty normal to anyone who sees me in my daily life.  Even with the dark bags under my eyes and my perpetual hooded sweatshirt, I don't look too different from any other pregnant mother of two young children.  It's pretty intentional...even when my hair is in a sloppy ponytail and my shoes don't match my shirt, it has taken a lot of effort to look as normal as I do most days.  Because on the inside, there are days where I am about one smashed loaf of bread from completely falling apart.  Don't get me wrong, all things considered...I think we're doing pretty well, but even that's relative.

Tidal Wave

I feel like I have to note that I have tried several times in the last week or two to put together a post, but I am feeling so stuck that I'm having a hard time getting anything to come out the way I want it to.  We have been struggling so much and for me, that manifests itself in a complete inability to do most of the things that I need to get done...the girls get fed, cleaned and cuddled each day but sometimes that's where the accomplishment ends.  I have an ever-growing list of tasks that I need to complete, but I just can not seem to do them. What I do wind up getting done is all the little stuff that doesn't take much thought or effort but the bigger, more difficult stuff keeps getting put off. (Points in case...we still haven't contacted the funeral home, our car has needed a new battery for a month, I have three different bills to call and fight insurance about...the list just keeps going.)  Part of my purpose in this italicized note is to explain why I just haven't posted in a while...the other part of my purpose is try to explain one more facet of grief that doesn't typically pop to mind.  

I have a post in draft form from last week where I stated that I felt like we were pretty stable right now and things had leveled out a bit. I hadn't found a time to edit it like I wanted, so I just let it sit.  I took a look at it again today and realized that it just isn't relevant right now.

Because right now? We feel like we are falling apart all over again.  This past week has easily been the worst week we've had since we got the diagnosis...and honestly, I can't figure out exactly why.  There have been a few little things that have come up (mostly bill-related stuff) and we are feeling more tired than usual...but nothing that seems to warrant the depression that has taken over our whole house.

I saw a post recently by another mom who described grief as kind of being like a tidal wave...one minute you are fine, sitting on the beach with your toes in relatively dry sand.  Before you know what happened, you get swallowed up by this giant wave and have no option but just to ride it out and pray for it to end soon.  Right now, I really can't think of a more accurate way to describe what has happened in the last week.

Chris and I have had several discussions recently about how we seemed to be doing pretty well and wondered if maybe we weren't grieving like we should be... turns out it just comes and goes, because a few nights ago, I started crying and just couldn't stop.  It was easily the hardest I've cried since we got the diagnosis in October and it seemed like it just came out of nowhere.

In reality, I know it was just another step in this whole process because we've been working on dealing with feelings as they come up naturally.  We make it a point not to force conversation, but when one of us has something that we need to talk about, it takes priority over all the other stuff that's going on and when it's just the two of us, we'll take a chance to talk.  Even when our talks end in those gasping sobs like the other night, I'm glad we can have them.  I'm so thankful that we aren't trying to hide from this and that we both have a safe place where we can talk about all of those things that roll around in your mind that you dare not say to anyone else...because, sometimes, when the sobs finally stop and you can breathe again, you find that a little piece of you has healed.

Thankful

I have a few favors to ask of you tonight...just bear with me and I promise I'll explain myself.

Step 1:  Stop everything else you are doing for about the next three minutes and give me your full attention.  I promise, it'll be worth it. (And if it's not, feel free to leave me a comment and tell me, I won't be offended.)  :)

Step 2: Look around you; at all of your surroundings.  Notice the color, shape and size of everything you see. (Seriously, don't just take a quick glance and keep reading.) Take your time and don't come back to Step 3 until you're ready.

Step 3:  Listen, really listen to the noises that you hear. Pay attention to even the noises that seem mundane, the things you are used to hearing every single day.  Take your time and don't come back to Step 4 until you're ready.

Step 4:  Take three or four really deep breaths.  Notice all of the smells that surround you, even the unpleasant ones.  Take your time and don't come back to Step 5 until you're ready.

Step 5:  Think about what you've eaten today.  Really stop and think about each item; was it hot or cold? salty or sweet? delicious or so-so?  Take your time and don't come back until you're ready.


I'm not going to ask you to be thankful for the things around you or the possessions that created the sights, smells and sounds that I just asked you to notice.  I'm not even going to ask you to be grateful for the food you've eaten today.  Although, don't get me wrong, we should all totally be thankful for those things as well.

But when was the last time that you were really thankful for your sense of sight? When was the last time that you were truly grateful for the ability to hear the world around you?  When was the last time that you appreciated the ability to smell a dirty garbage can because that also meant that you can smell roses blooming or cookies baking?   When was the last time that you stopped to appreciate the fact that you can taste the food you eat, even if that means sometimes we get sour milk or burnt toast?

It is so easy to take for granted those most basic, simple things in life...but in reality, how different would our lives be without those basic, simple things that we most take for granted?  We just expect to wake up each morning with the ability to see, hear, smell, taste and touch the things around us.  It's always been there, so we figure it isn't going anywhere. 

I expected to have a healthy, normal, happy pregnancy...I've mentioned before that my biggest concerns were worries about a c-section and whether or not I could breastfeed again.  It never occurred to me that something would ever be seriously wrong.  I completely took for granted the fact that our daughter would be born with everything she needed to live a long, healthy life.  Honestly, there haven't been a lot of positives to come out of the reality that she won't, but the one thing I've learned above all others?  To be thankful, to be grateful, to cherish the gifts I have been given...because nothing is a guarantee. 

I Will Carry You

I Will Carry You

http://www.youtube.com/watch?v=pxZhEcTzn6Q (This link has lyrics with images set to the song .)

http://www.youtube.com/watch?v=J2CnUtVY35o (This link is tougher to watch - Todd and Angie Smith lost their little girl to another condition that was "incompatible with life." Todd is in the Christian band "Selah" and produced the song in honor of Audrey Caroline; this video is a slideshow that a friend created for them with images of their family before, during, and after the birth of their daughter.)


There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this

People say that I am brave but I'm not
Truth is I'm barely hanging on
But there's a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who's chosen me
To carry you

Such a short time
Such a long road
All this madness
But I know
That the silence
Has brought me to His voice
And He says...

I've shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies, no more teary eyes
Who could love her like this

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who's chosen Me
To carry you


I think this song is probably going to be sort of an intro for a number of posts to come.  As I said above with the YouTube links, it's by a group called "Selah" and one of their members, Todd Smith, lost a daughter named Audrey Caroline shortly after her birth to another condition that is "not compatible with life."  It is a beautiful song and theirs is a beautiful story.

Todd's wife, Angie, actually kept a blog throughout her pregnancy and since.  She also wrote a book entitled I Will Carry You that details her pregnancy and her walk with God throughout.  It is a wonderful book and when I'm done reading it a second time, I'm planning to pass it on so that someone else can feel the comfort I've felt from her words.  (You can find her blog at http://angiesmithonline.com/ if you are interested.) 

The book was actually sent to me by my friend Ruth; in my eyes, it was one of those situations where God puts someone into our lives but it may take years before we know why.  Ruth and I met in college, but hadn't really stayed in touch (other than reading statuses on Facebook). Shortly after our diagnosis, she wrote me to let us know that she was praying for us and wanted to share Angie's book with us since she had recently read it.

Not only was I touched by her offer, I was struck by the ways in which Angie's book spoke to me.  There have been so many times that I've been reading and just stopped to think "Wow - that was exactly what I needed to read today." Or "Huh...that is exactly how I've been feeling." Her faith in God is an inspiration and I hope that one of these days, I can approach this all with the faith that she lives daily. 

I plan to do a few more specific entries on passages that were especially meaningful to me, but for now I just wanted to share their story and Audrey's beautiful song.

Baby Leila Grace

"Leila Grace was born at 3:25am on November 24th and joined the Lord and angels in heaven just a few seconds later."

Though an entire country separates us, my heart aches for Leila Grace's parents and I ask that you pray for their comfort during such a difficult time.  Her time on Earth was far too short, but I am sure that her family and friends filled that time with as much love as humanly possible.

For the life of me, I can't remember how I stumbled across Leila's mommy's blog (believe me, I've tried to retrace my steps but have no idea how I came across it!).  She and I received the news just one day apart that our precious babies had anencephaly.  Witnessing her strength and love for her daughter has truly been a blessing and I am so thankful that we were able to connect during these last six weeks.

Know that you are in our thoughts and prayers.

Wouldn't Change A Thing?

On one of the bad days recently, I started a pretty angry post with this same title.  I had read several other blogs where the mothers stated that they "wouldn't change a thing" about what they had been through.  The post was to have been along the lines of "Really - what kind of lunatic wouldn't change this situation if given the choice??" ...

I still firmly maintain that any mother who has had to walk a similar path would have loved nothing more than to leave the hospital with a healthy, happy baby who had a chance at a long life with them.  This morning, it struck me that there was a different way of looking at it. (Isn't there always?)

What I realized is that, at least for us, it means that I would do everything essentially the same way if I were faced with it again.  Chris and I have talked at length about whether we intend to have any more children, and honestly, the answer would depend on the day that you ask (and ultimately, I suppose, on God's plan).  We have also discussed the possibility of this situation happening again, as our risks for a neural tube defect are now slightly higher a second time around. 

On the bad days, we say that we could never be strong enough to endure another pregnancy like this and don't know what we would do.  On the better days, when we are a little more sane, we realize that we actually "wouldn't change a thing." The child that we created together would still be "our baby."  His or her life would still have value and it still wouldn't be up to us to choose when that life should end. 

Chris doesn't particularly care for it when I get on this topic and most of the time, I'd agree with that feeling.  We don't even know whether we'll have any more kids, so why think about this when there are so many other more immediate things that need my attention?  Well...for a couple of reasons: Most practically, I have a lot of "free thought time" at work and these are some of the things that plague me in the middle of the night.  More importantly, somehow it helps me to reaffirm the decision that we've already made this time.  It reminds me that though all of the pain and sadness, it's the right decision for us.  

(I know that statistics show 90-95% of mothers in this situation don't agree with our reasoning...I'm not judging them, just speaking from our place.)

That's Okay

Anyone who has talked with me in this last week and has bothered to ask, will know that we have had a rough week at our house. (I sure wish grief would give us a schedule ahead of time so we could be a little better prepared for the extra-hard days/weeks!).

It's been several days since I've posted anything...mostly because I've been too busy sitting in my own anger, sadness and bitterness to bother putting together anything coherent. At first, I felt so guilty about the way I was feeling and spent quite a bit of energy trying to pull myself out of it but ultimately realized that it was where I needed to be for a little while.  I get so caught up in what I "should" feel or say or do that I find myself ignoring how I actually feel or what I want to say or what I need to do. 

I am finally realizing that I'm just not as in control of all of this as I want to be...and that has to be okay.  As long as I don't stop trying to control whatever is in my power, it's okay that I can't control all of it.  I am going to have to accept that some days, it will be a victory to get everyone out of bed and make sure that we are all fed and dressed.  On those days, there will probably be dishes in the sink and laundry on the floor.  That's okay.  Other days, life will feel pretty normal...I'll make full meals, our clothes will match, the laundry will get done and the dishes will all be put away.  That's okay too.



Brick Wall

So far, this has been one of the difficult days. Actually yesterday was a little rough too.  I think that just supports my theory that the good/neutral/bad days come in waves.

It's not that I'm ever really able to forget about the situation and the diagnosis, but it seems like some days it's buried a little deeper than others.  Some days, it's just more of a neutral background to our lives and not an all-consuming thought.  Other days, like today, it's raw and painful and infuriating.

Every once in a while, though not always with an apparent reason, I'll just have the thought "Oh my God.  This is really happening."  The best way I can describe it is that it feels like running full speed into a brick wall with my eyes closed.  It is in these moments that I can feel physical pain for the fact that my daughter is living inside me but that she is missing a vital part of her body. My chest feels like it is going to explode with the pain of knowing that she is not healthy and will never be healthy. My eyes overflow with tears when I have to stop and fully absorb the knowledge that she is going to die, probably within the next five months.  My heart aches when I acknowledge that we have done nothing to prepare our home for the arrival of a new baby; she probably won't see the inside of our house.

I hate when the reality hits me that we don't get to keep her.  We don't get to make all the normal plans that you are supposed to make for the arrival of your child.  We don't get to watch her grow up.   She will only be in our arms for a little while and that knowledge is almost unbearable some days. Today has been one of those.

I know that some of you are going to struggle to read this post.  The fact is: I struggle to write it.  It feels weak and indulgent, but walking this journey means that I can't just share the good days - that isn't fair to me or anyone else.  So some days, like today, I don't have anything positive to say.  I'm hurting and I'm angry.  And that's okay too.