Monday, December 24, 2012

My Christmas Spirit

Once again, I find myself in the position of having several posts in draft that I just haven't been able to finish and get posted.  I started to edit one of those a few minutes ago and realized that it just didn't suit my mood today.  I'm sure I'll come back to it, because I learned a lot from that particular post. It is definitely worth sharing, but not right now.

Today is Christmas Eve. Yesterday we spent the day celebrating Christmas with my family.  It was an awesome day and seemed like it ranked pretty high up on our list of "best family gatherings."  The kids (and adults) were all well-behaved and we all just seemed to be more relaxed and low-key than usual.  It felt good and I am so thankful for a family that is so incredible and so much fun to be around.

To be honest, it has been hard for me this year to find my Christmas spirit.  This is usually one of my favorite times of year, but this year I just haven't been able to really get into it. I guess that's understandable but I've been trying to at least fake it for the girls, because this is the first year that Tori has been ridiculously excited about the holidays and Abby is starting to understand what's going on too.

Fortunately, I've had a few things happen in the last few weeks that have helped me work to dig up the spirit that I know is in there somewhere.  Today's get-together with my family was a big part of it...but it actually first started last weekend at work.

For those of you who don't know, I work at a domestic violence shelter/crisis center.  We rely heavily on donations for many of the things we need because, just like non-profits everywhere, we are working to serve more and more families with far fewer resources and much less money than in years past.   Last week, we received a HUGE donation of canned goods from a professor at our local university (whose family was affected by domestic violence while he was growing up).  He has students in each of his classes bring in a few cans each in exchange for extra credit.  This resulted in about a TON of food that we were able to add to the shelves of our pantry...literally 2,000 pounds of canned and boxed goods.  I spent several hours putting just over 500 of the cans away and barely even made a dent in the stack of boxes we received.  I just couldn't help but be incredibly touched by the amount of food that had been provided.  (It also helped that I really really like organizing things and had a blast doing it!)

It wasn't that one person went out and spent an obscene amount of money...each person brought something small, but when all of that was combined it made for one impressive sight.

Then, this weekend I was helping wrap some of the donated gifts that families, businesses and organizations had given so that the women and children who are living in our shelter would still have gifts beneath the tree for Christmas, even if they aren't in their own homes for the holidays.  Admittedly, there were a ton of others who wrapped far more than I did...but I think that actually helped add to my awe.  To look around our conference room and see that each mother and child had a box filled with wrapped, donated gifts from perfect strangers...it's one of those "chill moments."

Again, it wasn't that one exceptionally wealthy person decided to play Santa Claus...lots of folks came together and all contributed to helping our clients have a much merrier Christmas than their situations would likely have allowed otherwise.

You see - I think what really prodded my Christmas spirit out of hiding is the realization that these seemingly little acts of kindness are the things that we often get too busy to pay attention to.  If you can donate a few cans of food or some toys to a worthy organization, that is wonderful and, by all means, go for it.  But just the same, take notice of the effect that a hug or kind words or just holding the door open for a stranger can have.    

Some of the things that have stood out most to me in these last few months are the little kindnesses that let me know others haven't forgotten what we're going through and that they still pray for us - a sincere hug from a co-worker, a willing ear when I need to talk, a phone call from a relative just to check in, a quick message just to let me know you've been thinking of us.  All of these little things are really the big things that have kept us going - it means so much to have the loving support of our family and friends and I want you all to know how much we appreciate it.





Sunday, December 16, 2012

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.

Thursday, December 6, 2012

Carry Them Forth

Carry Them Forth
If He were to shield us from these moments of great loss
He would have to do so at an unthinkable cost.
For if from our pain and suffering He sought to save us
He would be forced to limit the free will He so lovingly gave us.
In this world we will struggle and many days face heartache and strife

But in this world we will also know many wonders, each making up our life.
As we face a moment as dark and uncertain as this seems to be
We must challenge our heart to lead our soul to the light our spirit can see.
This too shall pass but not without first our mourning and tears
And as it passes and we go forth we do so with their memories for the remainder of our years.
Carry them forth, each and every day, make them known to all
For this will ensure their eternal influence upon the world and allow you to answer this call.
- Dg2012
 
 This was actually a Facebook post from a man I met ten years ago at my confirmation retreat; he is a youth pastor at a nearby parish and was one of the leaders there that weekend.  At the time I was a very lost 18 year old who wasn't anywhere near sure about my thoughts on God, let alone whether or not I wanted to commit myself to the Catholic Church.  I distinctly remember arguing about a number of points and I remember him patiently addressing each one with me.  I've since gained a lot of clarity on my faith and continue to work on my own walk with God, but am so grateful that I chose all those years ago to continue a path of learning and growing.  Three years ago, I saw him on Facebook through a mutual acquaintance and added him, because I never forgot his impact on me that weekend. 
 
Fast forward to now and I saw the words above show up in my newsfeed and although they were actually intended for the families impacted by a recent tragedy in my hometown, they really spoke to me too.  He's given his permission for me to share them here because I hope they will help someone else in the way that they've helped me. 
 
I don't have much to add to his words, because really they stand alone quite well...but I will add this thought: it's incredible that someone I met ten years for one weekend brought me such incredible peace with words that were intended for a situation wholly separate from my own.  We never know what impact we may be having on the life of another...
 
 

Tuesday, December 4, 2012

Grief Theory

Honestly, I had intended to explore a conversation I had the other day about the Kubler-Ross grief model but in true nerd style I decided to do a little research first.  I ended up reading a bunch of studies about a number of models that examine how individuals process grief.  I'm not writing for a college class, so I don't think I'm going to go into a critical evaluation of each model...but I think I will touch on each one.  (Keep in mind, these are just brief summaries of each theory and my own personal thoughts on each one...there is much more behind each model that could be explored if one felt so inclined.)
~~~~~

Kubler-Ross:  Five Stages
 * Denial - This is our way or dealing with the initial shock of grief.  It is sort of our way of just letting us deal with what we can handle at any given time.
 * Anger - This one is pretty self-explanatory.  It makes sense to get mad; mad at the person who has died, mad at those around you, mad at the doctors who couldn't fix it, mad at God.
 * Bargaining - We want to go back in time and change things. "What if I had..." or "If I..."
 * Depression - Feels like being in a dense fog without knowing what direction to turn or where to go.
 * Acceptance - This doesn't mean being "okay" with the loss, it just means that you've accepted your life without the deceased as your new reality.

People often think that you should progress through each stage neatly in order and come out at the end healed...but that's not the case at all.  Grief is messy and ugly so more likely, you find yourself bouncing back and forth between stages until you work out whatever it is you need to do at each stage.  I truly believe that eventually you can be nearly whole again, but it won't ever be quite the same.

J. William Worden:  Tasks of Mourning
 *I. To accept the reality of the loss. - This is realizing that "Yes, this is really happening to me right now.  It's not a bad dream."
*II. To process the pain of grief. - It's important to acknowledge that this hurts. It's painful. And that's just the way it is.
*III. To adjust to a world without the deceased. - This is working to cope with the voids left behind by the deceased. 
*IV.  To find an enduring connection with the deceased in the midst of embarking on a new life. - Realizing that the world will go on, but working to honor and remember the deceased.

This one isn't so different from Kubler-Ross's work, but seems to repackage similar ideas.

Therese Rando: "Six R's"
 * Recognize the loss.
 * React emotionally.
 * Recollect and re-experience.
 * Relinquish.
 * Readjust and return to daily life.
 * Reinvest and re-enter the world.

Again, similar stages restated.

Stroebe and Schut: "Dual Process Model"   (By far, my favorite!)
 This model holds that people oscillate back and forth between a "loss orientation" and a "restoration orientation" when facing grief.
 * Loss Orientation - This encompasses all the "work" of grieving that is typically thought of when you think of dealing with a loss.  It's the phase during which you get to be absorbed with the loss and trying to accept the reality of it.
 * Restoration Orientation - This is all of the other stuff that comes with real life.  This is where you work on trying to regain control of a world that has changed for you and finding a return to "normal."  This is that "adjustment" period when you work on how you can still function within the world around you; the world that didn't just suffer a devastating blow.

The interesting thing about this model is that it does allow for you to bounce between the two orientations and accounts for the fact that sometimes you will be "okay" (when focusing on the restoration aspect) but other times the grief will be overwhelming (loss aspect).  This model also allows for you to "take time off" from the loss phase to deal with the necessities of daily living.

 ~~~~~~
I don't honestly know if anyone else will find this helpful or not, but it helped me to be able to step back and look at my thoughts and feelings in an academic, more theoretical way (because that's just kind of how my mind works, I suppose). 

Thursday, November 29, 2012

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. 



Wednesday, November 28, 2012

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.




Monday, November 26, 2012

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.

Monday, November 19, 2012

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.)

Saturday, November 17, 2012

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.





Monday, November 12, 2012

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.

Sunday, November 11, 2012

Anxiety

Honestly, with all that has been going on, I fully expected to find myself coping with some serious depression...oddly enough, that hasn't been the case.  Of course I've been every shade of all of the emotions on that spectrum at some point, but overall I'm still on this side of that chasm.

What I didn't expect to be so prominent is my ongoing battle with anxiety and fear.  After doing more research and reading plenty from other mommas who have been where I stand, I probably should have expected it.  At least now, I'm at a point in my life where I recognize my own anxiety spirals and have a pretty good idea of how to handle them.

You see, here's the process behind it...we are all pretty secure in our lives, most of the time.  We have our normal ups and downs, but most of the time there is nothing Earth-shattering going on for us personally.  We see devastation in the news or hear about the friend of a friend going through something tragic, but the majority of the time we aren't personally drawn into it.  Then, out of the blue we are staring into the face of a tragedy that has inserted itself in the very middle of our own lives.  (This can, and does, happen with many types of trauma but for my purpose, I can speak only to the loss of a child right now.)

When you lose, or are in the process of losing, your child - you are shaken to your very core.  As a parent, our number one duty is to love our children; our second duty is to protect them.  You are fulfilling duty number one with all of your heart, but all of a sudden you feel like a complete and utter failure at duty number two.  There is nothing in the world that you can do to reverse the process that has been set in motion and it has to be one of the most helpless feelings in all the world. 

In a matter of moments, your safe little world is no longer so safe.  (Even those with an incredible faith in God will often describe this same feeling, even if it is only briefly.) Each moment becomes a terror in itself and you begin to imagine all of the other terrible things that could happen to further rip your life apart.  You imagine losing your other children, your spouse, your parents, yourself, your home...every manner of tragedy that could occur plays itself out in slow motion. 

Fortunately, at least for me, these periods come and go.  I recognize them as fairly well irrational and am firm enough in my belief in God that I understand that much of this is out of my hands anyway.  What it comes down to is a choice: a choice to embrace each day and make the most of it despite the fact that we never know what each sunrise will bring or a choice to live each day in fear of what might happen and miss all of the wonderful things that do happen.

Thursday, November 8, 2012

Blessings

Today has been a trying day.

Many of you noticed earlier that my Facebook status today was simply "So...two months ago, today would have had me hiding in bed in tears...today- I just shrug and watch the girls dancing to Tangled music, so blissfully unaware of anything else."  That was prompted by a slight accounting error on my part that had me in a bit of a funk.  There is no doubt in my mind that just two months ago, I would've been beating myself up about it and stressing all day.  Today, I can literally pinpoint the moment at which I decided it just wasn't really a crisis...I was watching the girls spin around in the middle of the living room and singing with all their hearts and it dawned on me, "Oh well." 

Then when Chris got home, he brought in the mail.  We haven't received the bill from our specialist appointment yet, but we did receive the EOB...and it shows our responsibility to be about six times what we expected to pay.  Why?  Because the "insurance year" started over on October 1st...fourteen days before our appointment.  *Sigh*

Again, two months ago...I would've been a sobbing mess trying to figure out how to take care of that little surprise.  Today - I swore a little, then thought "Well, we knew we'd have to pay that deductible next year for the delivery anyway...so we'll deal with it a little sooner I guess."  

Don't get me wrong...my anxiety is still a little higher than usual and seeing bills already piling up for a baby that we don't get to keep is more than a little disheartening ...but my point is this: I am amazed at what just one month can do to completely alter our world view and our approach to life.

I hope that no one reading this ever has to face what we're going through right now, but what I do hope is that you stop and think about how you see things.  If you learn nothing from anything else I write during this journey, learn to look for what is important.  It isn't the bills on the table, or the pile of work waiting for you Monday morning.  It isn't the dinner you burnt or the permanent marker stain on your wall.  It isn't the unfinished project in your garage or the Facebook game you have to finish.  It isn't the fight you had with your friend or a silly feud dividing your family.

What matters most are the blessings we are given every day and what we choose to do with them. 





Wednesday, November 7, 2012

Baby Girl...probably. :)

Yesterday we had our first doctor appointment since receiving our diagnosis - hard to believe it has been an entire month.

Chris and I were both pretty apprehensive about how the appointment would go; we really didn't get a chance to talk with my doctor after the initial ultrasound because we probably wouldn't have heard anything she said anyway.  Since we weren't exactly sure what to expect and didn't know how well it would go for us, my younger sister came up to stay with the girls (many thanks Jules!) and Chris and I had the opportunity to have a nice quiet lunch beforehand.

Our regular nurse was the one who took us back, so she said nothing about the fact that I've lost eight pounds this month; she didn't need to.  She also asked gently how we were doing and said she had been thinking about us all month.  She also told us that she had thought about calling me one day last week just to check in and gave us both a hug before she stepped out of the room.  (She has been with us from the time we first found out Tori would be joining us, so we've gotten to know her over the last five years.)

A few minutes later, our doctor came in and pulled out the stool.  Usually our visits are quick and there is no need to sit, but she sat and discussed all of our questions and gave us her point of view on several things.  There was no rush and it was clear that we had as much time as was needed.  We talked about how unfair the world can be because she just had another couple earlier in the day who was coping with a miscarriage, despite the fact that they were a loving couple who wanted their child and would've been great parents, much like us.  We discussed our visit with the perinatal specialist and she said they were happy to do any other detailed ultrasounds that needed done.  We mentioned that we wish we'd gotten to find out gender so people quit referring to baby as "it."  Her response?  "Well come on, we'll just go across the hall and take a peek."

She grabbed the nurse as we rounded the desk and we all went in to take a peek at baby.  I was already almost in tears before the images on the screen came up; although I thanked her several times, I don't know if she will ever really understand how much this meant to me and to Chris - there is a very real chance that we will see our baby alive more in ultrasounds than we will in real life.  Once again, Baby was being less than cooperative (and once again Chris blames me for this) and the umbilical cord was right between those two incredibly long legs.  Baby Girl looked quite comfortable with her legs all stretched out, tapping one tiny foot. The doctor spent quite a bit of time checking out different angles and said she is reasonably certain that Baby #3 is a little girl.  :)

Then the doctor told us, "Well, we can always take another look when you come back in next month and try to see for sure."  After that, she and her nurse both took the time to say some of the kindest words I think I've heard in the last month, "If you need anything at all, please don't hesitate to call.  Please don't think that, because of the circumstances, we're going to blow you off or treat you any differently.  Don't think that you have to wait until the next appointment, just call if you need anything at all."  This should seem pretty obvious, but it's actually an amazing reassurance to offer someone in our shoes.

We left knowing that she is our doctor for a reason - I can not imagine going through this with a practitioner who didn't understand us and with whom we weren't comfortable.  There is no doubt in my mind that she supports our choices and will do her best to do what is best for us.  I also have no doubt that she is struggling with what we are facing and truly cares for us, not just as patients but also as parents.

Sunday, November 4, 2012

Footprints


Footprints in the Sand

 
One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.
 
This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.
 
So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"
 
The Lord replied,
"The times when you have

seen only one set of footprints,
is when I carried you."
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
 
This has always been one of my favorites. I've always enjoyed the notion that God was there to carry us through our darkest moments.  I actually like it so much that I even got four little footprints tattooed across the top of my left foot a few years ago.
 
It is no secret that I have been struggling with my faith this last month and I'm nowhere near the end of the quest. There are days where I want nothing to do with God and am so angry that I don't want to even think about talking to Him or uttering a single prayer.  There are other days where I desperately try to still believe that He is in control and is truly there for us.  There are even occasional days where I feel His strength or see some circumstance that has helped prepare us for all of this and know that we aren't entirely alone. There is no real rhyme or reason as to what category a given day will fall into; at this point, it is still kind of random.
 

Last night, however, as I was putting Abby to bed and had some quiet moments to myself as she was drifting to sleep, I started thinking about the footprints on my foot and what they mean to me.  I got them shortly after Chris's mom passed away in 2006; it was partly because of how much I have always loved "Footprints" but also because it was one of her favorites too and it seemed like a fitting way to honor her memory.  I have always thought of them as a reminder to myself that God is always with me and will carry me when I need Him.
 
In the last month, I have completely ignored that reminder and felt like we were just roaming the beach of life without anyone to walk beside us.  Tonight, however, I ended up having a quiet conversation with God, not really intentionally but just as a natural consequence of pondering our footprints right now.  I found myself asking God to help me let him carry me right now because I'm overwhelmed and not sure how to keep making footprints of my own.
 
I think that's what it comes down to...I don't have to ask God to carry me.  I have to figure out how to let that happen.  That is the biggest obstacle to my faith these days: I want to believe in God, I want to trust God, I want to find comfort in God... I'm just having a rough time with knowing how to do it all right now but I do believe that I'll get there eventually. 

 


 
 

Saturday, November 3, 2012

"The List"

I swiped this from another blog...fortunately we haven't had too many ill-advised comments yet, but it's worth putting out there, I think.  These don't really just apply to our situation - they could pretty much apply to any tragic situation where you just don't know what else to say. 

When women experience the loss of a child, one of the first things they discover they have in common is a list of things they wish no one had ever said to them. The lists tend to be remarkably similar. The comments are rarely malicious - just misguided attempts to soothe.


This list was compiled as a way of helping other people understand pregnancy loss. While generated by mothers for mothers, it may also apply similarly to the fathers who have endured this loss.


When trying to help a woman who has lost a baby, the best rule of thumb is a matter of manners: don't offer your personal opinion of her life, her choices, her prospects for children. No woman is looking to poll her acquaintances for their opinions on why it happened or how she should cope.

-Don't say, "It's God's Will." Even if we are members of the same congregation, unless you are a cleric and I am seeking your spiritual counseling, please don't presume to tell me what God wants for me. Besides, many terrible things are God's Will, that doesn't make them less terrible.

-Don't say, "It was for the best" - there was probably something wrong with your baby." The fact that something was wrong with the baby is what is making me so sad. My poor baby never had a chance. Please don't try to comfort me by pointing that out.

-Don't say, "You can always have another one." This baby was never disposable. If had been given the choice between loosing this child or stabbing my eye out with a fork, I would have said, "Where's the fork?" I would have died for this baby, just as you would die for your children.

-Don't say, "Be grateful for the children you have." If your mother died in a terrible wreck and you grieved, would that make you less grateful to have your father?

-Don't say, "Thank God you lost the baby before you really loved it." I loved my son or daughter. Whether I lost the baby after two weeks of pregnancy or just after birth, I loved him or her.

-Don't say, "Isn't it time you got over this and moved on?" It's not something I enjoy, being grief-stricken. I wish it had never happened. But it did and it's a part of me forever. The grief will ease on its own timeline, not mine - or yours.

-Don't say, "Now you have an angel watching over you." Oh, great just what I wanted an angel. You're right I didn't want my baby I wanted an angel. I didn't want him to be my angel. I wanted him to bury me in my old age.

-Don't say, "He/She is in a better place." What better place is there than in my arms? How is it better that my child is in heaven than with his mommy and daddy? How is that better? Since you want what is best for your children too, would you rather have your child in heaven?...Didn't think so.

-Don't say, "I understand how you feel." Unless you've lost a child, you really don't understand how I feel. And even if you have lost a child, everyone experiences grief differently. And especially don't say this and associate it with something like your dog...it isn't the same.

-Don't tell me horror stories of your neighbor or cousin or mother who had it worse. The last thing I need to hear right now is that it is possible to have this happen six times, or that I could carry until two days before my due-date and labor 20 hours for a dead baby. These stories frighten and horrify me and leave me up at night weeping in despair. Even if they have a happy ending, do not share these stories with me.

-Don't pretend it didn't happen and don't change the subject when I bring it up. If I say, "Before my baby died..." or "when I was pregnant..." don't get scared. If I'm talking about it, it means I want to. Let me. Pretending it didn't happen will only make me feel utterly alone.

-Don't say, "Well, you weren't too sure about this baby, anyway." I already feel so guilty about ever having complained about morning sickness, or a child I wasn't prepared for, or another mouth to feed that we couldn't afford. I hate myself for any minute that I had reservations about this baby. Being unsure of my pregnancy isn't the same as wanting my child to die - I never would have chosen for this to happen.

-Do say, "I am so sorry." That's enough. You don't need to be eloquent. Say it and mean it and it will matter.

-Do say, "You're going to be wonderful parents some day," or "You're wonderful parents and that baby was lucky to have you." We both need to hear that.

-Do say, "I have lighted a candle for your baby," or "I have said a prayer for your baby."

-Do send flowers or a kind note - every one I receive makes me feel as though my baby was loved. Don't resent it if I don't respond.

-Don't call more than once and don't be angry if I let voicemail pick up and I don't return your call. If we're close friends and I am not responding to your attempts to help me, please don't resent that, either. Help me by not needing anything from me for a while.


If you're my boss or my co-worker:

-Do recognize that I have suffered a death in my family - not a medical condition.

-Do recognize that in addition to the physical after effects I may experience, I'm going to be grieving for quite some time. Please treat me as you would any person who has endured the tragic death of a loved one - I need time and space.

-Do understand if I do not attend baby showers/christening/birthday parties etc. And DON'T ask why I can't come.

Please don't be upset if I can't talk about your pregnancy, your new baby or someone else's. If your niece is pregnant, or your daughter just had a baby, please don't share that with me right now. It's not that I can't be happy for anyone else, it's that every smiling, cooing baby, every glowing new mother makes me ache so deep in my heart I can barely stand it. I may look okay to you, but there's a good chance that I'm still crying every day. It may be weeks before I can go a whole hour without thinking about it. You'll know when I'm ready - I'll be the one to say, "Did your daughter have her baby?" or, "How is that precious little boy of yours? I haven't seen him around the office in a while."

Above all, please remember that this is the worst thing that ever happened to me. The word "loss" is small and easy. But my baby's death is monolithic and awful. It's going to take me a while to figure out how to live with it. Bear with me."

Friday, November 2, 2012

Daddy's Book

I just had to share a quick story about my sweet, smart, sensitive daughters tonight.

When I ordered the children's books from Amazon, I also ordered one for myself and one for Chris. I was flipping through Chris's book for a moment this afternoon when Tori came walking through and asked "What's that book Mama?"  I told her it was Daddy's book about the baby and when she wanted to read it, I let her know that it was Daddy's and we should put it back so he could finish reading it.

She headed for the family room and I went around the other way through a different room, but when I came back into the family room...there she sat looking at Chris's book despite just having been told no.  She looked so sheepish because she knew she wasn't following the rules, so I just simply asked "Hey Tor, whatcha doin'?" 

Her reply?  "I'm looking at Daddy's book so I can figure out what's wrong with our baby."

I'm pretty sure my heart broke into a million pieces, so I just sat down and pulled her into my lap for a hug.  She told me "I'm sorry I wasn't being a good girl, but I just wanted to read it."  I told her that I understood and sat with her while she continued to read, then she wanted to read their books again.  She went to get them and as we sat down, Abby climbed into my lap too.  Although there were no tears from me this time, she still rubbed my arm and said, "'Kay.  'Kay."

We read the stories and I answered all of Tori's questions from last night again. Then, just as quickly, she wanted to know if we could watch "the sharp Aladdin" (known to everyone else as "Aladdin and the King of Thieves").  While they settled in to watch their current favorite, I couldn't help but squeeze them a little and thank God for such amazing little girls.

The Rest of the Ripple

When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not-curing, not-healing and face with us the reality of our powerlessness, that is the friend who cares."

-Henri J.M. Nouwen, "Out of Solitude" (as quoted in Pregnancy After A Loss



I come from a family of fixers and do-ers...we are people who want to solve problems and we don't like to be stumped by anything.  For the most part, we are logical people and prefer to believe that every problem has a solution.  As it turns out, I have tended to surround myself by just exactly that type of person with the friends that I have chosen in my lifetime - some have been in my life for more than a decade, others just a few years, and some that I've met only recently along the road that we've been walking this last month.  So for my family and friends (and certainly for us), this sudden feeling of complete powerlessness is a hard pill to swallow. 

I have to say, though, that I have really been fortunate that nearly everyone who has found themselves in our "ripple" for the last month has been absolutely amazing. Some have come forward with very practical offers of support or tangible things that they could do to help us, others have been there to listen when I needed it most, and still others have shared intimate details of their struggles and pain on their own journeys.  Many, many more have offered their thoughts and prayers

I am grateful for each of you and thank you sincerely for the hands you have offered to help pull us through these last few weeks.  It gives me quite a bit of strength to know that those offers have been extended and that I have a network of friends who are so very supportive.  I have seen so many others whose friends have openly criticized their choices or have abandoned them because their pain was "too difficult to deal with."  
  
As in the quote above, we truly aren't looking for anyone to give us answers or cures - none exist - but the touch of a friend or relative who understands the importance of "simply being present" in whatever capacity you are able is the most valuable support of all.

  

Thursday, November 1, 2012

How Do You Break A Heart On Purpose?



We told the girls tonight - A wasn't terribly interested, but T was a whole different story.

I had ordered two children's books from Amazon - Something Happened and We Had an Angel Instead -  and they arrived today.  I've been wanting so badly to tell T each time she asks about the baby because it seemed so dishonest to do otherwise.  So when we opened up the package, we all sat down and read them together.  The books were honestly worth every penny and as difficult as it was, they helped.

I read Something Happened first and couldn't stop the tears from silently falling as I read; honest to God, I had every intention of keeping it together but it didn't happen that way.  A immediately wiped my cheek and repeated "'Kay? 'Kay." as is her habit whenever she thinks anyone is upset.  T simply wanted to know why I was sad.  This ended up being a really good way to talk to her about being sad - a way to let her know that it's okay to cry and be sad but that we can still be happy too.  

When the story was over, we told T that the baby in Mommy's tummy was sick.  We told her that the baby was going to grow in Mommy's tummy for a little while still, but wouldn't be able to come home from the hospital with us.  ("But I want the baby to come home, I want to keep her!")  We explained that the baby would have a big owie on the head and that the doctors weren't going to be able to fix it ("But if they put medicine on it, it will get better." "No, honey-it's a really big boo-boo and the baby isn't going to get better." "Then they can use LOTS and LOTS of medicine.").  We let her know that we would all get to meet the baby at the hospital, but that the baby was going to die ("But I don't want the baby to die! I want a baby sister!").  We talked about how the baby would be an angel and could go live in Heaven with God and Grandma ("And our balloons! The baby can fleeew up to Heaven just like my balloon did and A's balloon did!").  Then she wanted to know if we could buy balloons to send up to Heaven for the baby, of course we said we would.

She also talked about wanting to hold the baby and hold her hands so she could teach her to walk ("I can hold her hands and help her walk! Cuz she'll get bigger while she's growing in your tummy!").  Once we explained that the baby would still be very tiny when it was born and wouldn't be able to walk, then T was adamant about getting to hold the baby ("Mommy and Daddy can put her in my lap and I'll hold her. But if she wants me to put her down, I'll give her back to Mommy.").  She seemed satisfied with knowing that she'll get to hold the baby and meet him/her before the baby "flews" up to Heaven.

The rest of the night was a lot of repeating those same questions and reading each book another five times...interestingly, she never wants to read books over and over again anymore like she used to but that seemed to be her way of processing everything.  Each time we got to the page that said "Our baby died because something happened" she wanted to know what happened to the baby in the story, so we would explain that maybe their baby was sick or was too little or maybe his body just didn't work quite right. Then she would ask, "Like the baby in your tummy is sick?"  So we would start again and go through each question for her.  I know it won't be the last time we answer these questions, but it was so interesting to watch her processing and working through everything.  As for A, she'll be nearly two when the baby is born and will likely understand more then than she does now, so I suppose we'll just do the best we can and help her however seems best along the way.

**I know there are those of you reading this who are going to disagree with our decision to inform the girls about what is going on and with our decision to bring the girls to the hospital.  And that is okay.  Luckily for you...they aren't your children and this isn't your situation.  If you know us, you know that this isn't a decision we came to lightly and know that it is one we've done plenty of research into.  Rest assured that we've made the decision that we feel is best for our children and our family and we appreciate your support.**




Tuesday, October 30, 2012

Broken




Webster's Online Dictionary defines "broken" as: violently shattered into parts, damaged or altered by breaking, made weak or infirm, subdued completely (syn- crushed, sorrowful), not complete or full.  


When I asked Chris how he was doing the other night, his response was simply, "I feel broken."

Those of you who know him at all know him as a man of few words.  When we are with others, he really doesn't speak much unless he has something important to say.  Fortunately the same rule doesn't seem to apply when it's just the two of us and we really have a lot of wonderful conversations.  So for him to sum up everything so perfectly in one word really shouldn't have shocked me. 


It's a remarkably apt description of the way we've been feeling.  We both still get up each day, we go to work, we take care of our girls, we manage the house, we talk to friends and family.  But even while we do all of that, we're acutely aware of the fact that we are not quite whole right now.  We've got a lot of pieces and parts that haven't settled back into place yet and we've each most certainly been damaged in this process.


Thankfully we have one another.  We've also got the support of our families and friends. We've been blessed with the prayers of those who know us and many more from people we've never met. We know that in time, we'll get to be a little less broken. We also know that like anything that has to be put back together, we won't be quite the same the second time around.  I think there is even the possibility that we'll actually be a little stronger and a lot wiser when we're finally whole again.  

 



Monday, October 29, 2012

A Powerful Ripple

We have been so positively blessed with overwhelming support from our families and friends in the last few weeks.  It has meant so much to us to know that so many are praying for us, thinking about us and reading my words here.  We are truly grateful to those who have reached out to us and for us.

But today, I ask for a different kind of support and maybe a different prayer.  I ask that you will think of the other family members affected by the life and death of the angel that I am carrying. I ask that you say a prayer for each of them.

You see, Chris and I aren't the only ones hurting. I've been so wrapped up in my own grief and in trying to survive these last few weeks that I haven't really thought as much about everyone else as maybe I should have.  There are grandparents, aunts, uncles, and cousins who are hurting right now.  They, too, are mourning the loss of this child and struggling to watch their loved ones in so much pain.  They are also grappling with a profound feeling of helplessness because there just is so little that can be done right now.

I ask this especially for the sake of the grandparents.  It has occurred to me in the last few days, through reading some pretty powerful blogs and through some soul-searching of my own, that this is very likely as hard on each of the grandparents as it is for us as the parents.  On top of the grief that naturally comes along with a death that takes a loved one much too soon, they have to watch their own children struggle with one of the most unimaginable pains a human being can suffer.

I think of how excited Mom was, before the diagnosis, to be telling people that this would be her eighth grandchild.  I think of the amused look on Dad's face when Tori unwittingly told him about "the baby in Mommy's tummy" far sooner than we intended to share.  I think of Mike's excitement when he found out he would be getting yet another grandbaby so soon after the arrival of granddaughter number three in November. 

Then I think about the pain and devastation that was so obvious from all three when we had to tell them about the diagnosis.  I think about the tears that I heard in each voice and the strength that each one has struggled to summon forth when they knew that their children needed it more than ever.  I think about how hard it must have been for my Dad to have to call my siblings because I knew I couldn't do it that day - although I am eternally grateful that he was able to do that for us. 

I have been selfish the last few weeks and wanted them to be there to support us, but I realize now that they need support just the same that we do.  This isn't easy for anyone and it isn't fair to ask anyone in these circumstances to "be strong" for the sake of anyone else.  We all need supported sometimes and sometimes we need to be there to support others.  Even the strongest tree will fall if it isn't permitted to bend a little when the wind blows.   


Sunday, October 28, 2012

A Brief Shining Moment

"Continuing the pregnancy is not about passively waiting for death. It is about actively embracing the brief, shining moment of this little life."  http://www.perinatalhospice.org/FAQs.html

What a beautiful way to think about this little life - a brief, shining moment. 

Some days, and these are the bad days I've mentioned, it does feel like we are just sitting around waiting for death.  Other days, I realize what precious little time we have with this child and strive to enjoy every single second.

When I look back on this time, I don't want to remember all of the grief, the tears, the pain, the anger, and the sadness.  I want to remember feeling him/her kicking.  I want to remember watching my belly grow as our child grew.  I want to remember talking to this baby just like I did with each of the girls when I was carrying them.  I want to remember each little hiccup. I want to remember the time that we'll spend at the hospital holding him or her.  I want to remember showing this baby all of the love that it is possible to give.  I want to remember seeing the girls meet their sibling.

And I'll want to remember all of the things that other mothers complain about and take for granted - I want to remember having to go pee every twenty minutes.  I want to remember all the stretched ligaments and pinched nerves.  I want  to remember my backaches.  I want to remember my fingers and feet swelling.  I want toremember the discomfort of each contraction. Why would I want to remember these things too?  Because they are all a part of what few memories I will get to have with my third child.  In the past, I've been just as guilty as other mommas about complaining during those last few weeks or months, but not this time - how could I possibly complain when those things are really just such small irritations when you're looking at the big picture?