I don’t feel God anymore.

My whole life, up until two year's ago, I have always felt God’s presence - in me and around me. Blindly believed in Him and his omnipotence. He has a plan for me, I knew, a plan for a good life. My faith was unequivocal, I was certain of my beliefs.

I haven't been certain for some time now. And I don't feel God anymore because I am pushing Him away. 

When I pray, (yes, I still pray) I share my anger towards Him, with Him. I tell Him my state (as if He didn’t already know). I am...Drowning. Suffocating. Failing. Falling. Dying. But He doesn’t save me. With every passing day, the Savior doesn’t save me and I wonder - Why? 

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Exactly one year ago today, Elliott had been in the NICU for 61 days, would have her first* Christmas in 4 days (*we count it as Christmas zero, a practice Christmas. To us, this year is her true, first Christmas), and was 9 days post her tracheostomy. Of ALL the curve-balls we received during my pregnancy and after Elliott arrived, her needing a trach was/is the biggest curve-ball yet. The trach is a conundrum as we still don't have a specific medical reason why she needs it. The trach is also extremely bittersweet.

BITTER:

• The trach is the reason why we can’t leave our daughter with a babysitter, her grandparents, anyone except our nurse. Only those who can handle an emergency (the trach coming out). Therefore, the trach is the reason why Brad and I never.get.a.break. Never. Not a real break, anyway.

• The trach is the reason why we have not slept a full night sleep despite Elliott being a great sleeper. Literally, I have not had a single night of full sleep since she’s been born. (See previous description of states; specifically “dying”.) We have to suction her at night. It’s like when you need to clear your throat so you do it, but Ellie can’t do that with a trach so the secretions build up and block her airway. We turn on the suction machine that, no exaggeration, sounds like a lawn mower at the head of her crib to clear out her airway. She sleeps through it (seriously, this baby is astonishing). On any given night she needs 5 - 15 suctions, and if she gets sick she needs suctioning approximately every 3 minutes. For real. That's why we are psycho about germs and have Purell on Subscribe & Save. Thanks Amazon Prime for allowing me to keep up with life... at least somewhat.

• The trach is why we have to bring an emergency trach kit, resuscitation bag, oxygen and suction machine + supplies with us everywhere. Everywhere.

• The trach is why we had to pass real life simulations in the hospital of potential {terrifying} situations before we could bring our daughter home. We also had to watch ourselves in these simulations on film and then critique our response times and resulting actions. I imagine it was like watching game film and discussing how your plays could've been better executed but I wouldn't know because - ew, sports.

• The trach is the reason we can't take our daughter swimming or put her in the bath tub.

• The trach is the biggest reason people stare when we take Elliott out. It's confusing and foreign to most people.

• The trach is the biggest reason I am a coward. (More on this another time)

• Lastly, the trach is the reason we don’t get to truly hear our daughter - no laughs, no cries, no babbling. This pill is the hardest to swallow day after day. I would give anything to hear Ellie giggle. An.y.thing.

SWEET:

On the other hand and, for the win, the trach is the reason my daughter is alive. (Let this sentence marinate for awhile)

So, despite the lengthy list of bitter trach points being a compelling argument as to why we hate the trach - they are all null and void. The sweet prevails.  

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Almost immediately after Elliott was born, she was struggling to breathe on her own. She needed to be intubated (have a breathing tube inserted into her mouth) multiple times and after all the failed extubations (removal of the breathing tube) the word “trach” made its shocking debut.

The deciding factor for the trach was when Elliott coded - the whole event was like a scene from a Grey's Anatomy season finale. It happened on 12/1/16 during a routine extubation. The medical staff was going to remove the breathing tube and try her on C-Pap again or Nasal Cannula. This was the 3rd trial and what happened was something we never could’ve imagined. 

I stepped out into the hall because I could never bear to see these type of events. It’s one of those 'if you don’t know what’s happening, everything must be fine'. At times during our sentence in the NICU, ignorance was survival, not bliss, but pure survival for me. Brad stayed there because he was tougher than me and always wanted to be involved -which I appreciated, made us a good team. I remember talking with our two visitors at the time, my Grandmother and my brother, Jay. I was partly paying attention to our conversation but also very distracted by what was happening on the other side of the wall. I was anxiously checking my phone for Brad’s text letting me know it was all done and that she was doing great. However, after what was an unusually long amount of time I got this instead:

Once those last four words came through, I sprinted into the NICU to witness the most tragic of scenes. Privacy screens were up all around Elliott’s bed, there were 20-30 Doctors and Nurses surrounding her, yelling numbers and orders. The monitor reading all of Elliott’s levels was lit up like a Christmas tree. And, most impactful of all, the alarm that rings throughout the NICU when a baby is dying was sounding for my daughter. For MY baby girl. The alarm you think will never ring for your baby, rang for my baby. My baby is not getting enough oxygen. My baby’s heart rate is dropping rapidly. My baby is fading away and I can’t do a fucking thing for her... ... ...

I destroy Brad’s shirt with my tears and use his chest to silence my screams. We pray, unrelentingly. “Please God, don’t take her from us”. Over and over and over again. 

I can’t tell you how long this tragedy lasted but, I can tell you as the mother of that baby, it lasted far too long. When Elliott was stabilized, they invited us to come behind the privacy screens to see her. For the rest of my life, and despite how hard I try, I will never be able to erase the image of my 41 day old baby laying there in her hospital crib looking like a lifeless, porcelain doll. The color drained from her body, her movements gone, her eyes closed tight, the tube and machine breathing for her as she laid there - recovering. I rested my head next to her torso, put her tiny fingers into mine and wept, silently, as every one around me watched but tried not to. I held her hand for an hour or two, perhaps even more. Just standing there, never wanting to leave her side again.

We slept at the hospital that night.

11 days later, on 12/12/16, Elliott received a tracheostomy. Now here we are, one year later and she still has it. We don’t know how long she will need it. She could start progressing much faster and be decanulated (trach gets to come out) in 6 months. She could need it for 6 years. We have no idea, it’s all up to Ellie... and God...

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As the new year approaches, along with everyone else in the world, I can't help but reflect on the past year(s). My dwindling faith and increased anger - it's recently become evident just how linked they are. The more I've been blaming and pushing God away, the more unhappy and unhealthy I've become. The more I hide and focus on all the hard, all the time.

Well, I'm over it. O.V.E.R. it. 

I want to be happy again. Healthy again. I want to focus on the good, despite hard still existing. Most importantly, I want to feel God again. I want to know that He has a plan for me, for my family, and it is for good. Even though it may not always feel that way - I must have faith! When I welcome Him into my heart, things suddenly feel less heavy and the positive pieces of my life shine brighter, as if they have little halos around them to draw my attention. 

So, my New Year's resolution (that I'm not waiting until New Year's to start) is to bring God back into my life and to reawaken my belief system. 

Oh, and, to floss. Daily. But I am gonna wait until New Year's for this one... 

Until the NexT21,

Aubrey

PS - Merry Christmas from Elliott!