Friday, December 7, 2018
Hey guys! Thought I'd pop in for a long overdue update. :)
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.
Wednesday, October 3, 2018
Does anyone else feel like September lasted foreverrrrr? It was so busy but it just seemed to drag on and on. I digress...
First of all, thank you all for prayers and meals and words and thoughts and flowers and things to put a smile on our faces. We continue to feel lifted up spiritually and physically - my heart treasures this community God has given us, near and far, stranger and friend, so deeply.
Second of all, thank you for your patience with me in getting out some updates on what's going on. I know, I know, no one expects me to write and I don't feel an unhealthy obligation but I always feel a need (a healthy one, I think) to keep everyone in the loop as much as possible because you give so much to us! But the summer was busy and exhausting and honestly, I just was trying to be present in it half the time and just survive it the other half. Writing out what was going on with life seemed too much of a mountain to climb. It made me more tired to think about putting it in words. But I am feeling like writing again so here we are. :)
I'm thankful too for Frazer stepping in and taking a seemingly huge weight off my shoulders last month and catching everyone up on the summer. He just randomly offered to write and I said yes, please! He says he's no good at it, but he is!
So we are hanging in there getting through the days that seem so, so long. Ann Carlyle's homework/studying issue was a bear the first month or so of school but she's doing better with it the last week so maaaybe that will cut down on the daily drama. A mother can dream...
(Her school and teachers are wonderful and Ann Carlyle is wonderful and she has many wonderful traits but self-discipline is not on the top-10 of her strongest traits.)
I was able to spend TWO WHOLE weekends back-to-back in September with dear, dear friends. Those times with those incredible women that I am absolutely honored to call friends (including my sister) were beautiful and hysterical and precious and filled my cup to overflowing. Thank you, girlies, for loving me and loving each other and loving Jesus in ways that challenge me and inspire me. I think y'all are just freaking awesome. Just so you know.
Also, I have started meeting weekly with a small group of women that are in my Sunday school class at church and these women also are filling my soul's tank.
It's so hard to be intentional with my time with other women when I'm not distracted by a million other things but it's so important. God can use those relationships (new and old) and those times to encourage, to challenge, to teach and to see the beauty, brokenness and laughter in life - so many things. It's something that I have not made a priority much the last few years and I was feeling that void greatly.
So all that to say, that is one of the things that God is using to set me feet back on firm ground. He has reminded me that we need others to point us to Jesus and to help us trudge through the mire, crying and laughing as we go. That is how He created us to be - in community. We were not meant to be alone.
As Frazer mentioned in his update, things are never stagnant and there can be extreme ups and downs, often all in the same day. It's a battle not to live in fear everyday. It's a battle not to constantly wonder, what's going to happen tomorrow, next week, next month, next year? It's not for me to have all figured out and praise God it's not up to me! It's actually very freeing to let go of (my sense of) control - but it goes against my personality so I am constantly having to re-center myself around God and not what I fear tomorrow will hold. Why are we all here? Why do we have to suffer? I don't have all the answers but I do know we are here for God's purposes, for His glory, for the beautiful story He is telling even when we don't understand it and we don't know the end and sometimes it seems that all is lost. But it is not all lost. It's not. All the brokenness and tears and fear and anxiety and suffering and death will someday be no more.
Jesus died so that we may have life with Him - not so that we may have life through our kids, jobs, things, experiences, friends, relationships, etc.
Elle had a relatively good week last week but her seizures got bad again Sunday. She had her infusion yesterday but we aren't seeing any improvement with the seizures yet. We increased one of her meds a few weeks ago and I was hoping we could sit tight at that dose for awhile but we may have to make another change. She's a bit fussier these days and sometimes seems confused or just unable to communicate her needs. So that's hard and exhausting. She's 6.5yrs old and 55+lbs and has legs approximately 6 feet long. So that's hard and exhausting too. We should get some new equipment in the next few weeks to help with getting her in and out of the car and bathtub and things like that.
One more thing I want to mention, we've had some health scares and grief in our extended family the past few months so please pray for them when you pray for us. There have been and continue to be some heavy loads to bear. We love our family so, so much. (And thank you, family, for loving us through thick and thin!!!!!)
Thank you all again for your continued prayers and support. I just can't say it enough!!
I'll leave you with the words from a song by Sandra McCracken that has meant a lot to me the past few years. Jesus' love and peace be with you all!
(Here is a link to it if you want to listen to it...)
Rock of Ages, when the day seems long
Rock of Ages. Rock of Ages.
Bind Your children until the kingdom comes.
Rock of Ages, Your will be done.
Bind Your children until the kingdom comes.
Rock of Ages, Your will be done.
Sunday, September 9, 2018
Milla’s House fundraiser with Holland and Birch is back for the month of September! Check out the new cuff, necklace and beaded bracelet - they are beautiful! Grab some jewelry for yourself and/or for a gift and know that you are also giving the precious gift of compassion and hope to a grieving family through Milla’s House.
Frazer is awesome and wrote a loooong overdue update for us... :) See below...
Wow, Dana has not provided a long update since April and only a couple brief ones since then! I hate to disappoint, but this is not one of the famed updates from Dana. I wanted to provide a brief update on the family and I hope to follow up with a few additional and more general thoughts in a day or two.
Since Miles 4 Milla in May, we have cruised through the summer and are rolling in the new school year. We love you all and will follow with more details in the future.
Seriously, the summer was good and bad, like much of life is for all of us, right? I tell people that it seems like the dust has been kicked up in the air and never settles.
- We went to the BDSRA conference in July in Nashville and it was great to be there and see many of our friends in the Batten community. We were thankful that Dana’s parents were able to join us.
- We tried a beach trip, but the first day, Elle got a fever of 103 and high heart rate and generally was not well. We decide to bail and came home the next day, which was the right call. Traveling is so hard on Elle Belle and this trip really drove that point home.
- Ann Carlyle did a camp for a week, her first away from home, and LOVED it!
- Dana, Ann Carlyle and I got to go to Camp Good Grief for an afternoon in June and serve snow cones to the campers and volunteers, that was a lot of fun!
- My work has been good and no big news to report there, which is a great thing.
- AC has started 4th grade at CMDS and is loving it so far…except for homework, which no one loves.
- Dana is in a good place. She would not tell you this and I am not saying things aren’t hard, but she really is coping and moving through our days, weeks and months with strength and peace. There are a number of reasons, some known and some unknown, but at the end of the day, she is placing her foot down for the next step with boldness and the whole family benefits from this gift given to us!
- We had a trip to Ohio to see Dr. Emily for a six month checkup. No big news, great to have her team see Elle.
- Elle Belle, well, that’s a hard one. In some ways, she really is doing good and in other ways, we see the disease progressing. The effect travel has on her or when she gets sick, reminds us how fragile she is. Her seizures seem more frequent and lasting longer, so we are considering changing one of her meds later this fall (waiting on an FDA approval of a label). The disease progresses, slowly, but not slow enough. It’s amazing how much more she looks like Milla Willa every day, and sounds like her from time to time (see pics). She is generally a happy kid as long as you are not bathing her or changing her clothes. Night help has been better and more consistent and we are grateful for that.
We are cared for, provided for and loved well by so many and we thank you for that!
Please consider joining us on September 30 for the Good Grief 5k at Memorial Park. Here is the website: https://campgoodgrief5k.
Lastly, We have been blessed to have AC and Elle to receive horse therapy sessions from our wonderful friends at Southern Reigns through a scholarship they provided for us. Elle and AC love the horses and the time, but we have recently come to the conclusion that Elle is just too weak in her core to continue doing this right now. We are on break and maybe someday down the road, we can rejoin. Southern Reigns is such a wonderful organization and horse therapy is such a blessing to those fortunate enough to have it. May I ask that you consider supporting their “Hay for a Day” campaign? Info is below and following that are a couple of Elle pics from our Ohio trip.
Thursday, July 26, 2018
Today is a special day!
Thursday, July 26, 2018 marks the one year anniversary of the opening of Milla’s House and in one year, we have been busy. We have always known the need to provide grief counseling to our community was essential, and we have tried to keep up with the increasing demands from year to year. Expanding our reach to the midtown area has allowed us to serve more grieving individuals and families in our community.
Because of your support, Milla’s House has been able to provide over 2,000 individual grief sessions in this first year!
This is incredible work you helped us accomplish and we would not be able to do this work without you, our gracious friends and supporters. We sincerely thank you for supporting Milla’s House which serves countless individuals and families in our community.
Ann Carlyle Gieselmann (pictured below: center, and her cousin Vance to the right) attended Camp Good Grief last summer and had a wonderful time with new friends, learned a lot about feelings, emotions, and coping skills, and worked really hard on her grief. This summer, she was thrilled to come back to Camp (alongside her parents, Dana and Frazer) to serve sno-cones to campers at our annual carnival afternoon. As a special surprise to Ann Carlyle, she was inducted as an honorary member to a special group of people called Team 1520. Not just anyone can be a member of this elite group – Team 1520 members are former Camp Good Grief Campers who come back to volunteer and serve at our camps. They are teenagers committed to working on their grief daily and when they are ready, have the unique ability to share their common experience with other children who have lost a special loved one. We are so proud of Ann Carlyle!
While Milla is no longer physically with us, her legacy impacts families in our community in big ways. In honor of the one year anniversary of Milla’s House, we encourage you to celebrate with a donut, share your favorite Milla story with someone, or share Milla’s House with someone in need.
Angela Hamblen Kelly
Executive Director, Baptist Centers for Good Grief
Sunday, June 3, 2018
On behalf of Milla's House and the Baptist Centers for Good Grief, I wanted to thank all of this year's registrants, sponsors and donors for a fantastic event at Wiseacre on May 19! With your help and many more we raised just over $104,000 for Milla's House! We had 56 sponsors, 73 donors and 490 registrants for the rides and party! We distributed 543 T-shirts, ate a bunch of tacos from El Mero and around 55 pizzas from Dominos!
It is such an honor and privilege for Dana and I to see Milla's legacy through Milla's House and it means a whole lot to us to have so many support the work being done and joining us in honoring Milla's legacy. We are humbled by the continued support of our community!
Thank you for joining us and we look forward another fantastic event in 2019!
Frazer & Dana
Monday, May 14, 2018
I just wanted to send a quick word out that Elle is doing well! She seems a little weaker in her core and neck strength the last few days and she's been fussy and restless a little more than usual. But overall she is doing great and her incisions are healing well.
The surgeon had to shave Elle's head - a lot - in order to have a clean surgical field where he took the old port out and also on the other side of her head where he put the new port in. After much brainstorming on how to fix her hair, I trimmed about 6+ inches from her super long hair and we are doing a lot of 'Milla buns' and headbands to cover up the incisions/scars/shaved head.
(For those of you who may not understand what 'Milla buns' are :) it's what we call pig-tail buns on the top of the head because I put Milla's hair in those buns much of her last 3 years as her hair was so curly and wild and that kept it out of her face.)
We are so thankful we went ahead and changed the port out with a new one...the old one had a sizable hole in it. It definitely would not have been good to have another infusion with the old one.
We are still on schedule to have Elle's 45th infusion tomorrow morning. We don't know if we will see a difference in Elle' condition with the new port but anything is possible.
Also, we have a new night nurse starting this week!! For now, we will still have no help on Saturday nights but 6 days a week is sooo much better than 3 days a week!
One more big reminder! Miles 4 Milla's House is THIS SATURDAY, the 19th at Wiseacre!! Feel free to ride bikes, walk, run or just come for the party! The family ride (I'll be walking) starts at 10:15 and the party starts at 11. Rain or shine, it will be a blast with good people, good music, good beer and good food. Please help us support the Memphis community by supporting Milla's House Center for Good Grief!!
Go here to sign up or donate:
Much love and THANKFULNESS for all your prayers and encouragements!