Lucy had an extremely difficult time over the Holidays; she's been suffering and at times, the suffering is intense. We tried to getaway over Ellie's Heaven Day and Christmas, as it's excruciating for me to be in our home and surrounding areas, especially since Ellie Kate died there, in our arms. The Lake House which was offered to us was gorgeous and the views on the water even more beautiful than I could share! Sunsets were breathtaking and we even had several inches of snow, which is huge for Oklahoma.
Henry's Snow Angel
Bowie Jane is the BIRTHDAY GIRL!
God preciously orchestrated This INDESCRIBABLE GIFT to be born -
to be physically placed in our arms - on December 23, Ellie Kate's Heaven Day!
The snow, the lake, nature, the seclusion . . . it was magical for the boys, I think; I hope. It was supposed to be magical for all of us, but it wasn't. Lord, when will a getaway be magical, peaceful, hopeful for us? Disease took over Lucy's body right before Christmas, on Ellie's Heaven Day and Bowen Jane's First Birthday. Her breathing changed on Christmas Eve and she stopped voiding completely, or long periods of time. She was showing us all signs of death so I didn't sleep - I just stayed by her side, except to play Santa and set out the gifts early on Christmas Day. I panicked, I'm not going to lie, and reached out to three friends, asking them to pray intently, which they so graciously did, even as they were walking through their own immense heartaches.
God created gorgeous sunsets for us to enjoy during our get-away!
By Christmas Morning, we had set Lucy up on the living room of the Lake House - I wanted her to have a view of the light and beautiful water, so we faced her toward the big windows. She barely moved as the other children opened their gifts. Because of Lucy's decline, Mike and I decided to go ahead and leave that morning instead of staying several more days (but man, we needed the solace of those several more days and were so looking forward to it - especially me and Mike!!).
Bowen, spending time with her Big Sister on Christmas Morning 2017
Lucy Belle meeting Bowen Jane, December 2016
Once we arrived at my parent's home, Lucy immediately perked up. We had her on continuous fluids and feeds the entire trip and because of that, because of God's goodness and because He listened to the petitions of our friends on Lucy's behalf, Lucy AWOKE, COMPLETELY. She enjoyed time at my parent's and even opened a few gifts in her own special way. IT. WAS. BEAUTIFUL, and once Mike and I realized Lucy was once again stable and had color in her face, we both sighed in relief and completely crashed, mentally, physically and emotionally. We were so grateful my parents helped watch the kids so we could go to bed early, sleep in and even nap before going back to our home.
Since Christmas, Lucy has not gone back to that deathly state, which was so frightening, however, she still isn't back to typical, happy, busy state. In all truth and reality, Lucy hasn't been "Lucy" for a long time. She's sleeping even more, barely waking at all most days; she's excruciatingly thin as her feedings and formula increasingly cause more pain, rejecting the feedings she receives. More seizures, more jerking, more pain - it's difficult to watch and I struggle to even think of what Our Daughter must be going through. Gratefully, we've had times of giggles and more times of awareness over the last 24 hours or so, although these days have also come along with more intense pain with her gut, which still isn't working correctly (by that, I mean the food isn't going through her stomach and into her intestines - it's just staying or sitting in her stomach, and we pull/draw it off her stomach through her gtube/feeding tube; many times, the formula is in the exact same state as it was when we last fed her, two hours ago, without any signs of breakdown of the food whatsoever).
Mike and I very much want to meet with all doctors involved, as well as our hospice nurse, in order to make a "game plan". Since everyone isn't in one location, this likely will not happen. I've asked our doctors and nurses if group email communication would be possible, so we are waiting to hear back concerning that. We would absolutely LOVE your prayers that a meeting and/or email communication will happen, AND soon.
Thank you for your continued messages of all kinds - please continue reaching out even if we don't have the opportunity or emotional energy to respond. Each message brings us hope and light, showing us we aren't alone in our "Community" (we know we aren't alone from the Father!). Also, thank you for your continued, intense and specific prayers before the Throne of God, all on behalf of Lucy's health. We don't want her suffering here on earth - we want her to get better and come back to her old self, her gut being healed, giving us more time with her. However, we KNOW God WILL heal Lucy, no matter what and He will do what is best for Our Girl. I find great hope and comfort in that Truth! He will heal her here on earth (in little ways or completely) or He will give her the Ultimate Healing, with no more gut pain, no more feeding tubes or seizures, just food which Lucy can eat and things Lucy can do . . . things which are impossible on this earth.
Oh, Abba - Father, our Daddy-God! Let your Will Be Done.
Luke 22:42, New Living Translation
"Father, if you are willing,
please take this cup of suffering away from me.
Yet I want your will to be done, not mine."
Lord Jesus, I believe; help my unbelief, Oh God!!
Mark 9:24, English Standard Version
"Immediately the father of the child
cried out and said, ' I believe; help my unbelief!'"
Oh, My Friends! THANK YOU for donating to Hope Link and to our Medical Account! THANK YOU for giving to OKC Hope Link! THANK YOU too for loving the Hope Link Families we adopted this Christmas in honor of Ellie Kate's Month of Reckless Love. I didn't know what to expect, especially knowing it's been five years without Our Girl, yet ya'll came through and EVERY.SINGLE.NEED and want was met! Isn't that beautiful???!!! This happened because of YOU - because the Spirit moved you to act, give and serve, and to do so with Our Ellie Kate in mind!! I am sincerely overwhelmed with gratefulness.
If you are still looking to help or if you missed the opportunity to give to our Hope Link Christmas Adoptions, there are still needs to be met through "Ellie's Wish" which is a program through NKH Crusaders. As I've mentioned in previous posts, my dear friend and fellow NKH momma started this program in Ellie Kate's honor and the goal is to meet one need for a few fellow NKH families each year. These sweet families endure so much and have no way of paying for these items on their own. These items will bless their kids and would make their lives better, happier and/or easier.
Click on the links below for the need and wish of each family:
Thank you again for the December outpouring of love and service in honor of Ellie Kate!
Thank you for your patience and your understanding with us, especially during these difficult months - when oftentimes it's just too emotionally draining to post or share.
Thank you in advance for loving and supporting our fellow NKH Families by meeting their needs listed in the links above.
With so much gratefulness, my heart might burst . . .
PS: Be watching for the next update, with Bowen's Birthday details and details of us soon needing a place to live!