We’ve had a little vacation! (And by little, I mean big and awesome.)
Some sweet friends from Nashville gave us a vacation to the Bahamas(!) for a week. Not only did we get to stay in an amazing villa right on the water, but we ALL 5 got to go with 2 amazing friends to help us and we got to fly in a private plane down there!! We are now forever spoiled to this way of traveling. :)
The bright but deep, electric blue-green color of the water off Exuma Island is indescribable and cannot truly be captured by camera. All week, we sounded like broken records, so astonished at the water and how it didn't look real. And clear…clear as can be down to the bottom…until you reached the ‘drop-off’ where the water then turned a deep, dark navy blue but that was still as clear as can be. I always marvel (with a little fear thrown in there) at how vast and deep the waters of the ocean are - watching the huge swells - and it truly takes my breath away sometimes. How much more vast and deep is the love of our Savior, oh my soul??
We swam, we built sand castles and dug holes to China, we kayaked, we boated out to swim with huge turtles and play on an isolated little island with a beautiful stretch of beach, we relaxed and enjoyed just being in a different (and amazing) new environment. And Frazer and I got to have more dates than we have in 6 months? 9 months? A year? Regardless, we could not be more thankful to all those who enabled us to go on this trip and for Kathy and Reg for coming with us and working (like dogs!) so that we could enjoy this time. And I credit them for all the photos - they were our own personal paparazzi - so instead of us having a handful of pictures from our last day of vacation (which is the norm for us), we have hundreds and hundreds and hundreds of pictures. A treasure, indeed.
It was all truly wonderful, even as we dealt with sleepless nights, a noticeable decline in Milla’s motor function and an increase in her seizures. The seizures continue to be stronger and longer. And perhaps the hardest part to stomach right now, Milla needs a lot of assistance to walk most of the time and really is too weak to even stand unassisted for more than a few seconds. We also see her attention and lucidity rapidly declining.
But in spite of it all, Milla loved being at the beach. All 3 of the girls did! They are all beach-bums and come by it naturally. :) Being in such a beautiful place is good for the soul…marveling at God’s creation and watching the girls enjoy it as well.
It’s been tough being home this week as the reality of our situation sets in. (Not to mention...why is re-entry back to regular life always so hard?!) We had an appointment Tuesday to get Milla measured for a walker and wheelchair. When we made the appointment, I thought we were being proactive and would have things in place well before needing them, but we are now just hopeful that the equipment gets to us as soon as possible as Milla already is very-much needing the walker. (We are still waiting for her helmet to come in.) Please pray for this process. We have to get approval from our insurance company before the equipment can be ordered and then the pieces are custom-made for her. With it being the holidays, these things (that usually aren’t super quick anyway) could be delayed a bit. Also, please pray for compliance from Milla to use these things. I think if she actually will use the walker, she will be so much happier as it will give her a bit of independence in getting around.
And Elle - we are seeing changes in Elle intensify as well. Praise God she has stayed seizure-free but I feel her speech is actively declining day by day. And due to this and the disease, her frustration level is high and her behavior is…challenging. She is yelling/screaming about everything it seems, all day long. She’s always been a pistol (and she’s 2yrs old) but we saw this kind of behavior in Milla last fall/winter and it’s a heart-wrenching reminder of what is to come for her. She is also up 3-5 times a night (although, thankfully, once we check on her, she goes right back to sleep).
Sleep is definitely a challenge in our house these days. And I love my sleep…I neeeed my sleep. But I’m finding that God is sustaining me even in this way.
But it’s been tough and seems too much to bear sometimes. Every single thing is a challenge. Some days, I feel like I’m figuring it out and can manage but then I get thrown right back to my knees, begging God for mercy and and begging Him for strength to make it through the next hour (or even just the next few minutes).
Ann Carlyle is a trooper through it all - and is a great little helper. She complains about her own chores she has to do but never really complains about helping me with her sisters. I see her struggling in some ways, like needing more snuggles and attention but she really is doing well. She loves school and is excelling there. We have also started grief counseling with her and she did very well interacting with her counselor.
Please continue to pray for us and for wonderful memories to be made in the days that we have all together. And practically, please pray that we can figure out what we need to do about our childcare/help situation. I am struggling to know what we need right now, what we will need in the near future, etc.
Please pray for general health for all of us. Frazer just got over a bout of strep throat (crazy miracle that no one else got it!). ’Tis the season for lots of awesome germs.
Please pray for Milla’s muscle-control and eating. She hasn’t had much of an appetite for awhile now, and we are trying to find ways to sneak in calories. Also, we are having a speech consultation this week to discuss adding thickener to her liquids as she is starting to choke here and there when she is drinking. (This is another side effect of losing control over her muscles…she will have trouble swallowing.)
We are planning to travel to Birmingham next Wednesday to spend Christmas with my family - please pray that the girls will travel well in the car and that sleep will be okay while we are there. Pray that it will be a time of joy and even a little relaxation and that it will be a drama-free weekend.
Pray that all of our hearts will bask in Jesus - that we will remember that He became man and sacrificed everything so that we would have life with Him. A life free from sin, sickness and sadness.
I was reminded this week about Christmas and light and darkness…that Christmas means nothing if it doesn’t start with darkness. Jesus was born in the dark. He was resurrected in the dark. God perhaps does His greatest work in the dark. When the world couldn’t see its hand in front of its face, He showed up. And this week, to be honest, it’s been pretty hard to see my own hand in front of my face. It’s been dark - so very dark. But praise God for the hope I have in Him. Praise God that He is the victor - not sin, not sickness, not sadness.
Jesus, stay close to us during this holiday season.
Much love and joy to y’all and Merry Christmas!
|Our plane - and, yes, that is my car pulled up right next to it.|
|The views from the plane were UNbelievable. I mean, have you ever?!|
|The view from the pool - again, have you ever?!|
|Our sassafras Ann Carlyle loving every minute|
|Me and my Milla|
|Frazer and Milla|
|Big smiles from Milla - this was a small moment was our Milla completely free from her disease|
|Wrestling with Daddy!|
|A sweet moment captured between Milla and big Sissy|
|Swimming with turtles!|
|This was that stretch of beach on a little island we boated to. No photoshopping, no filter, no nothin'...just natural awesome-ness.|
|Sweet Milla and Elle taking a snack break.|
|Ann Carlyle enjoying a sunRISE. :)|
|A cool place we called, The Point, at the tip of the island that we visited a few times - the crashing waves were AMAZING and beautiful and we could've watched them for hours.|
|Elle flying high at sunset!|
|Milla-willa showing off her digging skills (that sand, by the by, is the softest sand you've ever sunk your toes into)|
|Frazer, Milla and me taking a walk|
|Our dear friend, Kathy, that came with us - we adore her - obviously. :)|
|Our other dear friend, Reg, that came with us - we adore him, too - obviously. :)|
|Frazer and Elle selfie!|
|Flying back to Memphis|
|Merry Christmas to all! (Small and kinda blurry but, hey, everyone is looking at the camera!)|