Pink Sky At Night...

He has sent me to bind up the brokenhearted, to proclaim freedom for the captives and release from darkness for the prisoners, Isaiah 61:1b


After Josie's memorial, after all our guests had gone, the food had been eaten, and her balloons released, a group of us were milling around in the church parking lot.  Our church parking lot looks out to Mt. Baker.  It's so beautiful.  But this particular night, to accompany our view, was the most beautiful pink sky I had ever seen.  I'm not sure where B was, but my kids and I saw it and to this day, we call it a Josie sky.  My kids will come get me, still, to go take a look.  It's such a sweet reminder of her life in ours.


I was 30 weeks pregnant when we found out that during Josie's development there had been a problem.  It wasn't something my Dr. had seen before in her.  Prior to this point, her development was seemingly normal. But, after her birth, 6 weeks later, it was evident that something had gone wrong in her very makeup, her DNA.


Although nothing was found to be wrong with our child "on paper", one of the biggest issues she had was that she didn't have a brain.  As she grew and developed in utero, she did have a brain at one point, but something happened (no one knew what), and it had disappeared.  She was born with only a brainstem, which is how she lived 23 days.  The brainstem is in charge of all our autonomic responses; heart beat, breathing, suck/swallow, and she was strong enough for those responses to take over and give her life, even for that short time.  We did not intervene in any way, except to care for her as we would any newborn infant.


After her birth, Josie "cried" for about the first 24 hours of her life.  I say "cried" because it wasn't a normal cry, but it was her cry, it was sweet.  After those first 24 hours, she never made another sound.  When we took her home (because there was nothing any Doctor or hospital could do for our child, they just let us go/sent us home), she hadn't eaten yet, and it wasn't evident that she would, although she did suck so that was promising, and in that second day of her life, her daddy got her to eat.  He bought us time.


The next 21 days were full of normal daily life; running A to school, groceries, play dates, along with many visitors wanting to meet this little one that would go to heaven soon.  I can understand that, what an amazing concept to touch one who will be in the presence of God very soon.  We definitely had an amazing support system in place and we felt very cared for and loved.  If you were a part of that, thank you very much.  We appreciate it still to this day.


I remember clearly when the end of her life was near for our Josie.   It was a Sunday evening, and we couldn't get her to swallow. If you know anything about hospice, or the shutting down of the body's systems, you know that this is one of the fist signs.  I didn't know this at the time.  I honestly had no idea what to expect.  I did call our Doctor and he told me that it was normal and that it would be soon now, that she could only survive that way for 24-48 hours.  It seems insane to me still today.  Your child is dying.  There's nothing you/we can do.  Period.  It was so very awful.


Josie died the following Friday.  October 31, 2008.  96 hours after she last had nourishment.


I know that moms everywhere do this, that they have to say goodbye to their children, that they have to let them go.  I cannot imagine (I know, right??!!) how excruciating this must be.  I only knew this child for 8 months and 23 days, and it ripped my heart out of my body.  I weep with you mothers, for your loss.  I weep with you mothers for that moment when there is nothing left for anyone to do.  I weep with you as you are asked to sit by and watch your child slip away, forever.  My heart carries the weight of that moment, with you, always.