This season is a tough one for us as many of you know.
We celebrated Milla's birthday November 2nd (it would have been her 8th birthday) and celebrated her meeting Jesus on November 26th...it's been 2 years. I cannot begin to tell you how much I miss her. That loss seems to grow daily and sometimes that void is so profound that it literally takes my breath away.
But as you have probably heard said, the pain doesn't ever go away, we just get better at living with the pain.
I still have moments when it all just seems like too much. I can't bear to go on. I have no more strength to carry on.
But I do. Not because I am a tower of strength and determination. Not because I can do anything I put my mind to. But it's because of Jesus. I can't talk about Him enough, y'all. He sustains me through the darkest times, through my weakness, through my whininess, through my anger, through my pain, through my failures. He is the One holding me up - carrying me.
I think of how Elle needs us to do everything for her - she cannot walk, she cannot stand, she cannot feed herself, she cannot swallow liquids, she cannot speak the words she wants to say, she cannot use the toilet, she can't even hold her head up at times. We hold her and carry her and feed her and listen patiently to her and wipe her bottom and use our hands to hold up her head so she can breathe and see.
This is an amazing front-row view that I get to live out - how God loves and cares for me. All praise to Him Who carries us but Who also came and humiliated Himself as a baby (who needed to be fed, wiped and held) so that we might have life.
Also, how amazing is this...He understands just how Elle feels.
It's been a hard season for all of us. Ann Carlyle has even seemed a bit melancholy at times which normally isn't even in her playbook. We all miss Milla so much and we all remember the precious and the painful of November 2016. Thank you for praying for us and our families during this time. We are truly blessed through that.
Elle is doing okay - in fact, after a couple not-so-great months, she seems to have plateaued for a few weeks now. Her seizures are pretty stable these days. A month or so ago, she gave us quite a scare when she got some kind of respiratory infection. We were able to keep her out of the hospital due to her amazing palliative care team but she was on oxygen and a monitor and was just really, really sick. But she has rebounded really well and while we see a little diminished strength, overall she is doing well.
A big, huge, titanic thing has happened! We finally got her wheelchair/stroller, her bath lift aaaaannd...a wheelchair accessible vehicle!!! So now we can put her in her wheelchair (inside where it is nice and dry and warm) and then just roll her outside and roll her up a ramp and into a Ford Explorer! It's awesome. We can even start the car up from inside the house and have it all warm when it's time to go. And I have heated seats which is just a Christmas miracle for me. Elle's wheelchair rides in-between and just behind the front seats so she basically feels like she is riding up front. I'm able to reach her and see her well and she loves her new car. :) Ann Carlyle loves it too and is super excited to help lock the wheelchair down and help with all that.
Our backs are rejoicing. And shoulders and necks and arms and everything.
The bath lift is great too - it is a chair that you can raise and lower down into the tub so it's muuuuch safer for the bather and the bathee.
Thank you for all the love and support as always! I can't ever say enough thanks for the all the hundreds and hundreds of meals we have received over the last 4 ½ years and now I am trying to cook some meals myself during the week. It feels good to be able to cook for my family again. It's only been a week and Elle is not the biggest fan as it takes me away from her, but I think this will give us some help with some dietary changes we've had to start making due to some health concerns. I've never loved cooking but I have truly enjoyed accomplishing these dinners this week. Thank you to those still providing meals a few days a week and for doing the chopping and prep work (which is often the most time-consuming part!) so I can speedily cook a meal. It takes a (big) village and you guys are the most amazing village!!
Thank you also for those that help us with childcare! These times are much-needed and much, much, much-appreciated. I can't express how helpful this is to our marriage and our chore-list and our tired bodies and minds. Thank you from the bottom-of-my-heart to all you warriors that give of your precious time to give time back to us.
Special shout-out to my mom...who is one of the most self-less and gentlest and amazing women I have ever known. I could and should send a special shout-out to her every week. She regularly drives to Memphis from Birmingham to help with Elle. Elle is tall and strong-as-an-ox 60lbs and my mom is 5'4". My mom is a superstar. And she not only cares for the physical well-being of my girls, but for their souls. Through her life and through her words and actions, we are all witnesses to Jesus' light and love. Oh and she loves on me and my soul too. :) We may be 6 months away from Mother's Day but she deserves to be celebrated every day. I love you, Momma and THANK YOU.
These 2 things, help with meals and help with Elle, may seem like smallish things but they are massive things. And we have had consistent help with those things since 2014. Just wow. And thank you again.
Okay, I'm going to wrap this up :)
Love to you and yours. May your Christmas be filled with true peace and true joy. Emmanuel - God with us.
Dana
