Its Just Not Right

Its just not right to be sitting day after day, hour after hour, night after night, in a room designed to bring joy, and happiness, and hours of play, listening to my baby struggle.  Its just not right.

Its just not right to be so afraid to leave the room for fear of losing her and her being alone in the moments she takes her last breath.

Its just not right to be talking about her death and making decisions for those moments after it happens on the evening before she should be starting 3rd grade.  While others are packing their little girls back packs and anticipating tomorrow's big day, I'm packing her toy shelves and bins with more medical supplies in anticipation of having everything ready at a moments notice for whatever she may need.   My heart is broken.  Severely broken.

We stay near, lie next to her, and hold her hands constantly because there have been moments that we honestly thought she was leaving.  It is that dire here in our home.  It is so awful.  It is so indescribable.

The only things that bring me any source of comfort right now are seeing her surrounded by her things.  Lying on her pillows, her blankets, her newly painted bed.  I look at her sweet face resting underneath the tree she used to swing on and the light that shines in the windows against her skin causes her to glow.  I still see beauty.  Among the swelling, the bruising and discoloration, the wounds...I still see her.  The beautiful child that has given us so very much.  It brings me  peace knowing that Dave and I have made decisions to give her the dignity of quality rather than expecting her to endure more so that we might have quantity.  As broken and devastated as we both are at the knowledge that she's dying, we have given her our all.  We have provided a happy, peaceful, joy filled, childhood to the very best of our ability despite the pain and sickness that is stealing her from us.  She is not lying in a hospital room miles away from her family being cared for by strangers.  She is home.  Her playroom.  Her family.  Her surroundings.  That gives me peace at some level beneath the intense pain I am feeling.

Our fear in making Ash more comfortable with the use of narcotics was that we would lose her sooner.  Despite the statements made to us that it would not take her from us any sooner, it is. We have now crossed over to that place where we are making her comfortable and giving her up all at the same time.  She is losing her will.  Her fight.  She is slipping from us.  We have lost her personality and her spunk.  We have lost her smile.  Her laughter.  Her joy.  It is gone.  She no longer has the desire to play her Ipad or to sit up or to interact on much of any level.  Her only requests each day are to drive.  So we drive.  Hour after hour.  She keeps her eyes closed and seems to not even be aware, but the moment we slow for a light or a stop sign she fusses and cries and signs now.  She wants us to drive now, not later.

Along with the morphine came a lack of movement of her own which was helping her to keep the fluid from filling her lungs.  For the last 36 hours we have been battling the fluid which is making her breathing more and more difficult.  The x ray tech just left our home and we are waiting to find out if she has developed a pneumonia over the weekend or just a severe plural effusion.  Either way we will be adjusting medications tonight to try and make her more comfortable.

We have had a very, very difficult weekend and today has proven to be even more so.  As we work our way through this struggle we are trying to make decisions that all of us can live with.  Trying to make plans, trying to ease her burden, trying to protect our teenagers.  We are in the most impossible, most unbelievable, most difficult place.  We are both shattered.

Your prayers for our children as they face a new school year tomorrow with the knowledge that we are losing their baby sister would be greatly appreciated.  I pray they will be surrounded by good people who can love them, support them, and treat them with gentle kindness as they work so hard to keep the tears from falling.

Its just not right.  None of this is.