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.

Remembering and hurting

I need a little space to grieve and this is where I am turning.  My head has been spinning for weeks needing a place to settle into.  I am hoping writing here will help. It is a Friday morning, March 3 at 11:50am.  I had high hopes for the day.  I had plans.  Instead, I am sitting here watching Keyan sleep.  I wonder when she will wake up? I watch her  having some sort of neurologic misfirings that keep her body in an almost constant twitching motion while she sleeps, her muscles tightening over and over again.  I feel sad. I feel an ache in my body that makes it hard to breath.  But not because of today, although whenever she sleeps this much it is a reminder of where we are in this journey, but more so, I cry for what we have lost.

Comparing Keyan's days today to where she has been is terribly painful for me.

*She attends school sporadically for 2-3 hours at a time.  She used to be able to go all day.  This means she misses out on choir concerts, cooking with her class at times, many of her therapies that she could receive at school, and so many peer interactions.

*This year, she made it to one afternoon of Special Olympic bowling.  Last year she was able to compete in the end of the season tournament.

*The last time the Young Americans touring group came to town she was able to participate in the weekend long workshop.  It was intense.  She took breaks, and it was a lot for her, but she was there and loved being a part of it.  The group will be here in two weeks and I have to wonder if going to watch both shows will be too much for her.

*She used to be able to attend her siblings swim meets or basketball games.  She never really loved going but at least she felt part of the family and both Paul and I got to go.  The last time we tried to take her to a basketball game she ended up crying because of the noise and the surroundings were too overwhelming, despite headphones and her iPad.

*Keyan now spends most of her time at home in her reclining chair or bed watching movies.  Her body and mind are fatigued and the pain and gagging are less if we all honor that.  She used to play and join at the dinner table.  Every damn night around 5:30 Paul and I silently look at each other and wonder if we make her come to the table or let her be.  I'll admit that sometimes I make her sit with us out of selfishness.  I want her to be part of "us" so badly.  But often, the conversations move too quickly and she gets confused or frustrated at her brother being his noisy 15 year old self.  She sits on the edge of the bench just waiting for everyone to be done with sharing their best and worst part of the day so that she can go back to her room.

*We have her registered for summer camp again this year...but I have no idea how that will play out.  Two summers ago she was able to spend most of the days at camp during that week.  Last summer I think I picked her up early every day and I know this summer she will spend less time there....a place that she loves, a camp that loves her with a depth we rarely see, a group of kids who embrace her differences, and yet she will most likely not be able to physically partake in much of that week.

*The paper work came home this week for Special Olympic track and field.  Do you remember two years ago when she went to Calvin Collage and ran on the track, did the standing long jump, and the softball throw?  I do.  I remember that day vividly.  Last year she was all "trained" to go but her feet go twisted up with one another at one of the final practices and she fell.  Her body was too bruised and scraped up to go.  We had been seeing more falling and tripping but it happened to catch her right before the big day and she couldn't go.  This year, I looked at the paper, Sidney gave me a hug and said, "It's sad that she can't do it anymore isn't it mom?" and I threw the paper away.  No use even playing the game of "maybe we can figure something out."

*Keyan's IV and medicine schedule is such that it is virtually impossible to have anyone help take care of her and give us a break.  There are a few hours in the evenings where we have precious friends that come and help bathe her and get her ready for bed.  There are a few special people who come early in the morning and sit in my dark kitchen to stay with Keyan while she sleeps so that I can take my girls to school a few days a week.  There are brave friends who are willing to put aside their own fear and learn how to give her medications and use her wheelchair.  A year or so ago that was so much less complicated, now it is multi-stepped and overwhelming.  The timing of everything has gotten more strict and Keyan's need for additional PRN (occasional) meds has increased....and none of those are easy to give.

*Leaving the house with her has even changed.  Do I have all of the meds I need and even the ones that I might need?  There are so many.  Do I have the heating pack, a towel for gagging, her essential oil stick for nausea, the iPad, the headphones, the suction machine, the flushes and syringes for the meds, the disconnect kits, the wheelchair, an extra set of clothes, the list goes on and on...

This list is just a fraction of what has changed for her...a lot has changed for the rest of us too.  And yet, what I find very interesting is that I can snap a few pictures of Keyan watching April the giraffe and her yelling at the giraffe for not having her baby yet.  Or post pictures of her doing a puzzle, or  out with us to get ice cream, share her funny conversations,  or catch her sitting in her chair smiling at the camera.  I can can even capture and share swim meet celebrations, Super Bowl parties, ear piercings, meals that we eat, or any number of other things, and our life from the outside could be seen as pretty normal.  But I have no way to share the pain in all of those things.  The dividing and conquering that Paul and I have been thrown into.  The enormous amount of things that we can't do any longer. The hours upon hours that I sit in the confines of this house because we are trying to honor her body and give her the best days she can have.  Boy do those days look so different than days already lived.

Trust me friends, we are all grasping on to the many many things we have to be thankful for and once again, I will say, we know there are harder days coming.  But today, and honestly maybe even the last few months, this is where I am. This is the brutal reality...we are doing everything in our power to keep this beautiful girl alive and "thriving" in her own way, and it seems to be working.  But I fear it may be slowly killing the rest of us.  My heart cracks a little more every time we have to face another "remember when."