If you've been following Our Blog, you've noticed that Lucy's been suffering for some time now. We've run test after test after test, mostly invasive, some in-patient and some outpatient; ALL uncomfortable and even painful for Our Sweet Girl - things we absolutely HATE for her. We still don't have full answers on bladder/kidney pain nor on the endless, sleepless nights full of screeching and painful cries. But, there have been comfortable times too, as well as somewhat restful nights. Lucy's still smiling and still finds joy, still showing interest in the things that she loves like her brother, her doggies, her grandparents, her Daddy, taking walks, swinging and being outside (whenever it's not piercing hot); she still LOVES shopping with mommy, loves being in a pool, her friends and nurses, and being around other kids here at home. LUCY IS A JOY and lives up to her name, "Beautiful Light"!
The hardest truth that's come to light is that Lucy Belle is declining, or maybe it's NKH progressing; probably BOTH. Our doctors are aware of this and are actually the ones who've brought it to our attention, although we've known in our hearts that this decline has been taking place. All of us have noticed the progression of the disease and the level of suffering continues to rise, despite our best efforts on all fronts.
The MOST important thing to us as Lucy's parents, is to know that she is as pain-free as possible. After watching Ellie Kate suffer SO greatly with pain her entire short life, we promised ourselves and Our Daughter (all of our children, really) we would do EVERYTHING within our power to keep the pain away, even fighting for them to be pain-free, consistently staying on top of the medical teams until they did what we thought needed to be done in order for Lucy to be comfortable. It's in this light which we've made the hard decision to place Lucy on Hospice Care.
Friends, obviously this decision hasn't been made lightly, but after visiting with trusted doctors and nurses, as well as the Pediatric Palliative Care team, we agreed with their decision that Hospice would be the very best way to keep Lucy's pain under control. You see, Hospice isn't only end-of-life care but in fact, can also serve as palliative care. The Hospice Nurse will be able to deliver whatever meds Lucy might need, whatever time of day or night she might need them. Also, a special pediatrician will be in charge of Lucy's care now, working closely with Hospice and the Palliative Care Team, meaning she will receive the more personalized treatment she needs - the kind we've been praying AND searching for! This knowledge gives us as parents much hope, solace and satisfaction and we know that no other service could bring this type of care, despite the heaviness of it's name.
It may bring your heart comfort to know this, as it's brought me much comfort in remembering it . . . this is much how we ended up treating Ellie Kate's first year of life which was spent on hospice as well, and as she continued to thrive and survive despite being on Hospice Care, as she defied the doctors yet still needed close attention, including pain medication and palliative care intervention, it really was the perfect coverage and situation for Ellie Kate. God orchestrated it all without us even fully understanding it at the time and now, when the choice was brought up to us again with another precious Girl, it wasn't difficult for us to fully understand and remember it benefits, making it so much easier to make the right decision.
I know the words sounds so tough, HOSPICE and believe me when I tell you that it's incredibly difficult for me to even udder, much less write to you tonight. I'm crying now, because I didn't think it would be like this, and even though we've known Lucy's quality of life has deteriorated greatly. Making these choices are sickening - even WHEN you KNOW it's the right thing, even WHEN it's the second time around. I didn't know these years would go by so quickly, you guys. I just didn't know.
Something bringing us great comfort - something we want you to know - is that Lucy is STILL FIGHTING and as long as she's still fighting in this life, WE will be fighting for her, every step of the way, just like we did with Ellie Kate. We have no plans of backing down on Lucy's treatment, nor any plans of future treatment at this time. Also, we trust that in this, you respect us as we make our own decisions based off the Holy Spirit's leading and recommendations by our trusted doctors and nurses. While we appreciate your own experiences, remedies and ideas, we ask you refrain from sharing those with us at this time. Thank you in advance for understanding this important request.
"Life List" . . .
Once we knew Ellie Kate would be going home from the hospital on hospice that last time, we quickly made a "Life List" which is much like a "Bucket List", but instead is focused on things we believed Ellie Kate would want and enjoy doing before going to Heaven. With your help, we made a few of those things happen, even though literally within only a couple of days, and we couldn't be more grateful!
Even though Lucy is stable and we don't expect any major changes ANY time soon, we've decided to go ahead and make a "Lucy's Life List"! We'd love to accomplish the entire list by her seventh birthday on September 26, 2018. We're still working on this all-importance list but we know a few things Lucy would enjoy and LOVE at this time . . .
- Going to the Ocean! We'd love to take Lucy to the Destin area, or somewhere nearby, as Ellie Kate also spent a bit of time there and had a blast. We took Lucy there on the first anniversary of Ellie's death but since it was unseasonably cold that time, Lucy wasn't able to get into the ocean in any way (although we have great pics of her sweet feet in the white sand!). Feeling the warm sand and warm waves would simply be a dream come true for us and for Lucy!
- Going on a boat! We'd love to take Lucy on a boat ride! This could be at the ocean or even at a local lake! She could ride like a typical kiddo and could even get into a tube of some sort. She loves driving fast and had a blast on the rides at Disney and Universal, so I know she'd love an "active" ride!
- A pool - this is waaaay excessive, WE KNOW. We just also know that Miss Lucy LOVES water and it calms her to be around it and in it, even though we don't have access to it much. When she is around a pool, she could stay there ALL day, soaking and floating - it's the only place where her body is free and I believe it helps with aches and pains as well.
- Meeting Blake Shelton (and maybe Gwyn??) - Lucy LOVES country music, although she likes the guys' voices rather than hearing the girls' (which were EK's faves). Maybe, since he's from OK, there would be a way to make this happen? Obviously a sort of pipe-dream, but putting it on the list, nonetheless (EK wanted to meet Taylor Swift, Miranda Lambert or Carrie Underwood but received some special gifts, some autographed instead AND received a personal, taped message from Miranda, just for 'Ellie-Girl').
You know, I remember holding my little one-year-old girl, her little chunky legs and her animated face; those blonde, bouncing curls, gazing on her cherub-likeness - I clearly remember, at that very time and many times immediately after, that I had at LEAST SIX YEARS before I even had to WORRY about Lucy's well-being here on earth; before I even had to think seriously of her morality. I don't know why I thought this as there has been no promise of Lucy's life being only the length of her Big Sister, and quite the contrary as Lucy's life has been spent OUT of the hospital and has been mostly healthy and happy! Somehow, someway, I had that "worry" timeline in my head and I think of it now as a coping mechanism in some way. I wish it had gone by more slowly.
Six LONG years. It's a long time, right? But it isn't, and we all know it. And now, Lucy will be six years old this September, which means she is inching ever-so-close to that 7-year-mark which Ellie Kate barely hit (EK turned seven on Dec 4th and died Dec 23rd). But, please remember along with us, that Ellie Kate was only on hospice for three, suffered-filled days. But you know what? That WILL NOT be the case with Lucy. While we cannot see the future nor what each day will hold, we do know that Lucy is stable upon admission to hospice, which is very different than Ellie Kate. We have hope for more than a little more time with Lucy, holding to the expectant hope of more memories to be made, the realistic hope of more laughter and millions more kisses!
Six LONG years. It's a long time, right? But it isn't, and we all know it. And now, Lucy will be six years old this September, which means she is inching ever-so-close to that 7-year-mark which Ellie Kate barely hit (EK turned seven on Dec 4th and died Dec 23rd). But, please remember along with us, that Ellie Kate was only on hospice for three, suffered-filled days. But you know what? That WILL NOT be the case with Lucy. While we cannot see the future nor what each day will hold, we do know that Lucy is stable upon admission to hospice, which is very different than Ellie Kate. We have hope for more than a little more time with Lucy, holding to the expectant hope of more memories to be made, the realistic hope of more laughter and millions more kisses!
Ya'll. Whew. Thank you so much for your support and encouragement over the years. Thank you in advance for your support and encouragement through this as well. Thank in advance for helping us work on crossing things off of Miss Lucy's "Life List", and for praying God would work in special ways where it's concerned. Most importantly, thank you for your prayers and petitions on behalf of Lucy's health, especially now.
With Hope in My Broken Heart,
Ryan
