I actually began this post in the early hours of the morning, in the Banner Desert PICU, on September 11, and have come back to it many, many times in the weeks and months that have followed, in an attempt to finish and publish it.  

If you know me, you know that I am a girl of MANY words.  But I have struggled to find them for the past 4 and a half months.  They seem cheap, fall flat, or fail to convey what is in my heart.  I hope these will suffice...

On September 5, (an eternity ago), our world irrevocably changed.  It was a paradigm shift.  An alternate dimension.  There was a before and now there is after.  Nothing will ever be the same.

There are countless moments that will haunt me for years to come:

The look of panic on my child's face, alert and yet utterly unresponsive, like she was trapped inside her own body, when we first discovered her rapidly deteriorating condition.  The trauma of sitting in an ER hallway as my daughter's clothes were cut from her body and she was paralyzed and intubated, wondering if I had seen her eyes open for the last time. 

The agony of waiting by my daughter's bedside for any sign of improvement, as minutes turned to hours and days and each one lasted a lifetime, her body failing despite the multitude of machines and medicines pumping into her.  The panic of helping a nurse bathe her motionless and swollen body at 4am, one loving wipe at a time, and feeling utter terror about my limited human nature and wondering how I can possibly "show up" for both of my children in all the ways they will need me to in the lifetime to come.   The horror of being unable to help my hallucinating 9 year-old, who was aware and utterly terrified and unable to communicate because she still required a machine to breathe for her. 

The crippling anxiety of watching her for months-on-end for any headache, fever, or feeling of nausea that could indicate a potential seizure or debilitating sickness again.  The painful acceptance that, per the doctors, while Emery will likely improve some of her emotional regulation skills from where they are now, her personality will likely never "be the same."  The heartbreak of hearing my 7 year old ask, months after her sister has physically recovered, why her sister doesn't act the same, or feel the same, or love her any more.  The quiet heartache of missing my daughter, even though I couldn't be more thankful she is sitting beside me.

As terrifying and gut-wrenching, and overwhelming as these painful moments were (and occasionally still are), they pale in comparison to the love and grace and support we have (and continue to) receive.

When we first posted on our social media about Emery's situation, we asked you to hold space for us, cry with us, love on us, and pray for us.  And you have done that and more!  I will never be able to thank you enough.  But I have to try.

Thank you for pouring out prayers for Emery and for our family.  We feel them, we believe in them, and we need them.  Thank you for physically showing up for us: for visiting us in the hospital, flying across the country, driving for hours, babysitting London, coming to visit Emery for a low-key play date, bringing us dinner, being an extra adult living in our home for days or weeks on end, and for offering to come back whenever we need you. 

Thank you for printing us pictures of Emery so the hospital staff could get a glimpse of who she really was, and so we could have that reminder too, during the worst weeks of our lives.  Thank you for the posters and banners and balloons, for decorating Emery's hospital room and our front door.

Thank you for the journals and scrapbook materials, so we could have a place for our thoughts, and so we could create a book for Emery to understand what happened to her, since she doesn't remember getting sick, or most of the hospital.   Thank you for the blankets, and stuffies, and books, and craft sets, and toys, and all of the incredibly thoughtful and generous gifts you sent.  Our guest room looked like an Amazon warehouse for a few weeks in September, and the gifts you sent have been SO appreciated.  They have helped all 4 of us feel loved, and have provided wonderful and much-needed outlets for our kids to play and snuggle and create and cope with.   

Thank you for picking up the slack for us: for taking over parts of our jobs while we were on leave, for cleaning our home, for chauffeuring our kids, for letting us borrow your car.  Thank you for giving us grace and the benefit of the doubt as we have failed to respond to text messages and voicemails and invitations.  Thank you for understanding and continuing to be invested in us, even though we haven't posted a Caring Bridge update in two months. Thank you for making it okay for us to not be okay.

Thank you for financially showing up for us: for the gift cards, cash, checks, Venmos, and the Go Fund Me donations.  They have meant that we haven't had to worry about the million dollars worth of health insurance claims (and still counting), or about gas money or food.  Because of your kindness, we have stayed financially afloat, and have been able to focus on our children during this time.

Thank you for checking on us and continuing to check on us: for the phone calls, text messages, comments on social media and Caring Bridge, and the kind words in person.  Thank you for asking about how Emery is doing, and about how the rest of us are doing too.  It means more than you know!

Thank you for loving us so well.  To me, you have been the hands of Jesus these past few months.

I would be remiss if I did not also specifically thank the firefighters, paramedics, doctors, nurses, pharmacists, and respiratory, occupational, speech, physical, and "feelings" therapists who have cared for Emery at any point in this journey.  We will always be thankful for you: for your training, for your efforts, and for literally saving our daughter and giving her her best chance at life.

Everything about this situation could have been devastating, but for the grace of God and the generosity of our community, we have felt held and rescued, and have not felt alone for one moment of the past four-and-a-half months.  Your love has been overwhelming in the absolute best of ways.

There truly has been a paradigm shift, and our lives will never be the same.

I am not the same person that I was on September 4, and I praise God for that!  I have seen miracles.  I have felt God's presence in the quiet places.  I have witnessed physical healing that defied doctors' expectations.  I have experienced relational healing, where wounds that have festered for years were erased in an instant.  I have experienced depths of emotions I didn't know were possible.  I now know what it is to not only weep with sorrow, but to  fall to my knees and weep with joy.  "I have lived in the goodness of God" and I will never stop praising Him for what He has done for us.  Thank You, Lord!

These days, Emery's physical recovery remains incredible!  She no longer attends PT or OT, and is only in speech therapy & "feelings" therapy once per week, each.  Emery was also weaned off of her Keppra in December, and only takes vitamins and melatonin on a daily basis for now.  We will still need to carry her seizure rescue meds with us around the clock for the foreseeable future.

Neurologically, Emery is still a very different kid than she was before.  Her personality is still very different, she struggles with emotional regulation and a near-total lack of self awareness, and we are seeing some concerns with processing and executive functioning.  We will continue to see some specialists, including Neurology, Psychiatry, and Neuropsychology for months/years.

Most of our focus is on returning a sense of normalcy to our lives, now that our schedules are not dominated by therapies and doctors appointments.  (All 4 of us are in therapy still, and will continue to be, but things are definitely feeling more manageable now).  Emery is at school pretty much full-time, unless she has an appointment.

We are so thankful for her progress, and will share another update when there is something to share.

Thank you, again, from the bottom of our hearts for your love and generosity and support.  We are unspeakably grateful.  Words fail...