Tuesday, February 25, 2014

The Road is long and exhausting...

The day Emma came into the world, my life changed.  Well, anytime you bring a human into the world, you change, but wow my world was rocked.  I realized quickly that it was going to be a bumpy road as specialist after specialist was added to a list that was longer then she was at birth.  Our days were quickly filling up with appts, therapies, and home visits with teachers.  Surgery dates started to be discussed and Daniel and I started to have to make hard decisions.

It is horrible to sign paperwork that will cause your child pain, even if that pain is to make her healthier.  I still cringe ever single time, and make Daniel sign it sometimes too.  Because even though you know it is the right thing, it stinks!  It is even harder if you and the doctors are not sure of what will happen once they get to the OR.

Putting your trust in your own instincts and then in the skill of men and women behind blue masks, is scary!  And honestly that is the nicest word I can think of to write, in my head it is a much harsher word.  My husband and I have spent countless hours discussing and praying over medical decisions.  We have spent more sleeplessness nights then I can count, but the dark circles under my eyes show each one. Each decisions comes with highs and lows, but each normally starts in a hard good bye as someone takes her from us and goes behind swinging doors.

It never gets easier, but it does get more familiar.  I know more of the nurses, I know where the best snacks are, I know to go eat before she gets to recovery, I know that my family and friends is there to support and love us, I know that the time in the OR will end and we will get to see her again, and I know that it has to be done for her to get better.  I still cry, I still hate every second of it, I still cant stand to see her scared or in pain, and I still have nightmares that wake me up in cold sweats about the memories.

We have been blessed with a lot of time away from serious OR time in the past few years.  She has had to go to sleep for a few test and a few minor procedures but nothing to bad.  But that time has come to a close.  We will be starting a new healing journey with Emma in March!  The end results will be exciting but the road there is full of more bumps and is already exhausting us.  Emma will be having a cochlear implant surgery at the start of summer, but in true Emma fashion it cant be a easy task.  She has holes in her ear drums and the ear drum that will have the new hearing device must be fixed first.  So the first week of spring break we will be having out patient surgery to fix that ear drum.

The papers are signed and the prayers already flowing for a smooth procedure.  Now it is time to wait and try to soak up all the fun we can.  She will be down a few days and limited in some physical activities but hopefully we will be back and feisty as ever fast.  The older she gets the harder this gets, she is more aware and has more questions.  We are working through them as they come and letting her know she will be okay.
The road is hard people and we are blessed to have a large group of family and friend on this road with us, but it is hard and it is tiring.......

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