Our life today

 This has been my view for much of the day today and actually several days over the past week.  Keyan is having a rough go of it and spends most of her time in her reclining chair or her bed.  Our dog Maddie is usually not far and she switches between the TV and her iPad.  She feels crummy and is having numerous retching episodes a day that last anywhere from 40 minutes to an hour and half.  We have seen these episodes increase in frequency and duration over the last 4-6 months or so but the last  week or two they have reached a new level....a de-habilitating level.

We have been in contact with all sorts of doctors both here and in Cincinatti , had some tests done, been to the ER, reached out to our hospice social social worker, adjusted her medications, stopped food, restarted food, we use heat, weight, essential oils, and pressure point massage....ALL to no avail.  We comfort, soothe, switch out towels, encourage, suction, and sit by her side supporting her the best we know how.  We have wracked our brains along with our medical team.  There is no simple answer to what is going on.  It is all so complex and complicated and ultimately there just aren't many answers.

I have zero energy or motivation today.  Caregiving is truly such an honor but it is tough work that is mentally exhausting.  There are so many other battles to fight on top of this one...the power wheelchair battle, the nursing hours battle, the supply battle, etc but they all cease when the hands on needs increase.  The problem is, these battles never leave my brain....the plates never stop spinning! 

Helplessness is a feeling that is so overwhelming.  It leads to sadness, fear, frustration, and even anger.  The hope that this is just a flare up of her disease fights the inner fear that this is a new normal.  The unspoken words and knowing glances shared between Paul and I are haunting.  The tears come, the deep breathes take over, and we keep on putting one foot in front of the other.  We want to believe that this too shall pass....and most likely it will.  But history says we will not regain all of the ground she has lost.

The other kids are worried.  They miss her spunky self.  They hang out in her room with her and rewarm her heating pack.  They yell for us when she starts gagging, and some run from the room because the sounds are too hard to bear witness to.  They love to hear her laughing in between retching episodes and make sure that her favorite shows are getting recorded to watch later.  Paul and I are so thankful for a friend who took the other girls to go do some fun things and just give them a break....they deserved and needed that. In there words, it is "gut wrenching" to watch her feel yucky.

She is such an incredible girl...she attempts to smile during the gagging, she always remembers to turn the lights off as we move from room to room trying to find a more comfortable position, she is discouraged with the continued pain in her stomach and looks at us thru big eyes and says, "I even prayed to God for this gagging to stop.  He is either saying no or wait because the gagging keeps happening!" "I just want to feel better." "The days go so much faster when I can go to school...no offense mom!"  

She sits while the minutes tick by.  The saliva runs from her mouth onto the towel, she can't vomit but the sounds are the same and her body lurches with every new wave of nausea.  Her mouth is stuck open and the muscles around her lips are sore from being in that position.  It is ugly and painful and is her life right now.  And she lives it with such grace and beauty. She is an inspiration and joy through and through! And as I type, she is singing along with a Disney song and that sound makes my heart so happy!