Naming the Elephant

Dear family and friends,

I have attempted to write this post for over a week.  I gave myself time, and trusted that my gut would tell me when it was time to crack the door on what has been going on in our home.  That time is now.  

We have been with the early care team of Hospice for 6 years...you all know that.  That program provided some fun events, a social worker that checked up on us monthly, a nurse that we could consult with questions, and they were a great part of us figuring out how to give Keyan quality days.  Seven months ago, our early Hospice team made a referral to the hospital's palliative care team.  That switch was paramount in the last seven months.  The doctors have made several house visits, taken Keyan's case to larger national groups, came up with symptom management plans, and went back to the drawing board time and time again when things didn't go as planned.  They all worked tirelessly to figure out not only how to get Keyan to Mexico safely but what they could do to give her the best days while she was there.  And all of our hard work payed off....it was an absolutely beautiful 10 days!

A week and a half ago, that same team sat in our living room and helped us make the decision to enroll Keyan into the full Hospice program.  We have always known that Keyan's health would continue to just decline but we have seen that happen quite rapidly over the last 9-12 months.  We have never wanted Keyan to be defined by her illness and therefore, we normalized this journey...so much so in fact that she doesn't even know she has a disease!   In October, our doctors in Cincinnati said that this is exactly what this disease does.  That we should slow her days down, lean heavily into our palliative team, and even that we were doing too good of a job...which kept her going despite an illness that kept progressing.

In all honesty, we have not done a great job naming the truths of Keyan's disease.  Keyan's neuropathic dysmotility is a terminal disease.  Her GI organs have failed and that failure continues to effect her entire body.  Our interventions are extremely limited.  She has virtually no antibiotics that she can use, and getting a place to put another IV line would be an extremely difficult process and put her through significant pain.  Her anxiety and fear around the hospital and procedures has sky rocketed and it is heart breaking.  It is time to be real about where we are in this journey and make loving choices to give her the best days that we can get her.  At this point, the only way that can happen is with the help of Hospice.

Last week, when we signed those papers, we did so with the utmost of love and the desire to give Keyan life...to let her live for whatever time God has her on this earth.  I want to be clear that we do not feel like Keyan's death is imminent. As a matter of fact, we are planning on getting her to school tomorrow for a couple of hours.   I will also say that if we know it is going to happen, we will let you all know.  But we have turned a corner and will simply be focused on keeping her out of the hospital, getting her comfortable, and helping her enjoy every day.  We desire to never be selfish in the quantity of days that we have her with us but rather work with all that we have to give her quality days.

Since making this decision, we have been able to talk to our other kids and start naming the process with them as well.  There have been so many tears, questions, hugs, laughs, and knowing glancings.  We have found that there is a lot of freedom in just calling out the elephant in the room.  We didn't tell them anything that they haven't been seeing, or feeling and so it is almost a relief to hear it and be able to talk about it.  We are moving forward one moment at a time...together...and facing all that this oncoming train has to bring.  

In reality, not much has really changed for us except the knowledge that we don't have to take her to the hospital or run all sorts of tests.  What this decision has done, has given us a much needed layer of support that we have not had before.  It gives Keyan access to pain relief that we didn't have available to us.  It gives us social workers and spiritual advisors to help us navigate and make memories.    When it is in full swing and if I can learn to let go of some of the jobs that I have done for 12 years, it should allow me to be a mom to Keyan instead of a case manager.  That alone is powerful!

I will leave you with this.  While this turn in our journey literally leaves me wanting to throw up and I am having nightmares that are stealing my sleep, I am absolutely confident in our decision to bring Hospice on board.   When chronic illnesses and a terminal disease strikes, at some point you are doing things TO your loved one instead of FOR her.  While many of you can not imagine going through this, what I can tell you is there comes a time that you love your child so much, it is the only thing to do.  

We cherish you joining us along this ever changing 12 year journey.  We cherish your respect of our decisions, your prayers for wisdom, guidance and peace, your forgiveness in our selfishness, and your grace as we fumble through whatever comes next.