The day Aria died: Part 3

That HAIR!  I miss that silky head!

You can read Part 1 here and Part 2 here.

While I'm glad I was able to get so much written in the first two posts, it's been pretty emotionally exhausting.  So for today I picked a topic that will take much shorter to write (well, we'll see anyway).

I'd like to talk here about just a small degree of the turmoil involved in having a child with a terminal diagnosis.  Michael and I really struggled with how to decide what was best for Aria.  It is so terrifying to have someone's life in your hands, especially someone who can't speak for themselves to tell you what they want.  From about weeks 2-5 we were in a really weird place with plans for the future.  Aria had stabilized enough that we weren't living minute to minute anymore.  For the first time since she had been born, we started to wonder if we should start making long-term plans.  We even had mentioned on the blog (I think in the first post, actually) that we hoped to eventually take her home where we would have nursing help there.  Looking back it's crazy to think any of us ever got that optimistic, but even when faced when the bleak reality of her diagnosis isn't it natural to still hope for the best?

At that point it was just kind of a waiting game.  Just wait and see.  Before we could even seriously consider taking her home, we would have to put her through at least a couple surgeries.  Babies can't go home on ventilators so we would have to have a trach put on her.  And since trachs mess with your throat, feeding her by mouth would no longer be an option so we would have to have a g-tube put into her stomach.  In some ways it was a blessing to know so quickly that even in the best case scenario she wouldn't live more than a few years.  It helped guide us in how we wanted to spend what little time she did have.  We both agreed that we didn't want to rush and put her through those surgeries when really in the end all that would mean was prolonging her discomfort, especially since at home we wouldn't be able to attend to her every problem immediately the way they could in the NICU.  She wasn't strong enough for the surgeries yet anyway, so the doctors didn't really talk too much about them.  We just waited.  Waited for her to either improve enough that the surgeries became a viable option, or waited for her to get worse and take that option off the table completely.  The wait was both agonizing and beautiful at the same time.  I'm so glad we had that time with her, those middle weeks where she seemed to feel the best and we really got to know her little personality.
As you know, in the end Aria took her life into her own hands when she got sick, then stared coding the following week.  The decision about her future was made for us.  Even still, we were just sick to our stomachs those last couple weeks.  We knew what the right thing to do was, but STILL.  How do you knowingly say goodbye to your baby?  I know we surprised the doctors a little bit too - I know we waited quite a bit longer than most parents do after realizing that the only option is to remove life support and let their baby go comfortably.  We just were so heartsick about it so we were stalling.  Up to the very last moment I still worried that we could possibly be making the wrong choice.  Were we giving up on Aria too soon?  If we demanded she cling to life for a little longer would that change anything?  I knew that one day I would have to face my daughter in heaven, and all I wanted was to know that I had done right by her.

The entire morning of her last day, I just felt so sick.  I know I keep using that word - I keep trying to think of another way to describe it but that's really the best way I can think of.  It's like a palpable anxiety in your heart  - fretting over making the wrong decision, times infinity.  And this was a decision we would never be able to reverse.

.....So I just deleted like 3 huge paragraphs.  I realized I was starting to do a play-by-play that was more for my benefit than accomplishing my purposes.  I don't want to give that much detail on such an intimate moment.  think I gave enough information in this other post anyway about how peaceful we felt after she was gone.  We just knew without a doubt that we had done the right thing for her and that we would be able to stand straight and say that when we get to heaven.

I feel like I keep trying to describe something that may be indescribable.  Before she passed, I had anxiously asked all the nurses and others we knew who had gone through this same decision how they knew it was the "right" choice.  My cousins who went through this said it best "you'll always second guess yourself, but we know it was the right choice."  Even though we KNEW we were making the right choice for Aria beforehand, once she had actually passed we felt at PEACE about it.  Like. . .beforehand, we knew it was right, but now we KNOW it was right.  No doubts, no second guesses.  I know that doesn't make sense at all.  (If anyone has a better way to describe this, please leave it in the comments because I feel like I'm failing at this!)  I guess I can try to explain more like this - I wanted to feel that absolute peace about our decision BEFORE she passed, but it didn't come until after.  I don't know if that's true for everyone or not.  If we had felt the same peace beforehand we would have had no doubts and wouldn't have been in such emotional agony (maybe).  But I just don't think that's possible.  Which is no help to others who might be faced with such a decision, to tell them that they'll know it was the right decision after it happens.  But I have at this point read dozens of accounts of the passing of other babies, and they all talk about that same PEACE that was in the room after the baby passed.  I really believe that peace is actually a bit of heaven that gets poured out on us during such sacred events, and that is why it is so hard to describe because it is not a common experience.  The veil between earth and heaven is just so thin.

As I sat there holding Aria, I just had so much love for her and I was just so happy.  Which is an odd feeling to have when you're holding your baby who has just died.  Even though I was so sad, it was just such a beautiful experience.  I explained it to Mike and our nurse like this:  You know how you hear about how new moms have that surge of oxytocin right after birth and that's what sends them into such bliss as they hold their new baby?  Well, I was robbed of that with Aria's emergency c-section, and didn't even see her for days.  But I felt like I was finally now getting that rush of endorphins, because I was finally holding her and snuggling her without fear of hurting her and was so happy despite it being the saddest day of my life.  Again, it's hard to explain.  But I just didn't want to leave her because I knew once I left that room, I would never get that feeling back to the same degree.  The only regret I have about that day is that I wish I had held her just a BIT longer. . .but I was starting to feel these little tugs at my heart that maybe it was time to go.  I'd like to think that was Aria's sweet spirit in the room whispering to me "okay mama. . .we've had our snuggles, and now it's time for me to go do what I'm meant to do"  I know both of Aria's primary nurses stayed late after we left to take turns finally snuggling her too, and I hope it was as beneficial for them as it was for us.

As soon as we left the hospital, that magical feeling started to disappear and in the minutes, hours, days that followed the crushing grief returned.  Of course we are absolutely devastated by the loss of our daughter.  Hardly ten seconds go by that we don't think about her.  I still cry most days.  But at least among all the sadness is the feeling of "no regrets" - we know we made the right decision for Aria and that she can be happy now.  We may not get to feel that same overwhelming bit of heaven that we did that day cradling Aria's body after she died, but we do carry that peace with us.

I had expected to still feel very attached to her physical body after she died.  And I did/do, to a degree, but it has surprised me how much less I do than I expected.  I had a very difficult time leaving her the day she died, and really had to tear myself away.  But the next time I came in contact with her body, days later, was very different.  While I still loved the body that we created, her sweet little spirit was definitely gone.  It was good "closure" to the death experience and helped contribute to our long-term peace.


(**endnote: sorry this post was so fragmented. . .because I was too drained to write it all at once I had to do it over several days so it doesn't flow as well as some of my other posts)