Hey guys - what a sweet community you have been (as usual!). Thank you for caring and loving and praying and sending sweet words and giving hugs and meals and all the things.
It's been a busy summer - we ended up traveling a good bit. We went to the beach, went to Chattanooga, Birmingham, Maine and Colorado. It was helpful and good to get away...thank you that helped us escape Memphis a little here and there. But it was always good to get home too.
It's weird, it was always good to get home but it's also incredibly painful just driving around the city. Thoughts will hit me out of nowhere that it's been awhile since I've driven a certain way since not having to take Elle to school or therapy, etc. Or it'll hit me at a certain time that I should be at a certain place and then I remember. It all happens in a split second but it is unnerving and can rattle me for awhile after.
Grief looks like so many different things.
Sometimes it's exhaustion. Sometimes it's lying in the bed for 3 hours in the daytime, not sleeping but not doing anything else either. Sometimes it's sobbing until you can't breathe and you feel like you might vomit. Sometimes it's stoicism. Sometimes it's a smile and giggle at a picture, video or memory and/or spending an hour looking through those old pictures/videos. Sometimes it's the feeling that if you don't move and distract yourself whether it be cleaning up or running in 105 degree heat or just driving, you might lose your mind. Sometimes it's distracting yourself with a movie, a book or time with friends. Sometimes it's anger. Sometimes it's wondering what those silly girls would be like at ages (almost) 9 and 7 ½ if they were disease-free. It's wondering what they are up to these days in heaven. It's truly rejoicing that they are there with Jesus and healed but at the exact same time, feeling the very real physical pain of their absence. It is a pain like no other. Sometimes it's embracing and losing myself in the quiet and loneliness and sometimes that quiet can be suffocating. Etcetera. Etcetera.
I've been wanting to write here for awhile but just couldn't get myself to even start until today. I'm sitting at Ann Carlyle's ice skating lessons at 6:00 on a Tuesday evening and thought I'm just going to jump in and see what happens - fully aware that I might write one sentence and slam the laptop shut. (PS - I know it is Wednesday night...I needed a minute to process it all.)
I wish I had words for all the things that are going on in my heart, my mind, my soul, my body and I just don't. I think that's one reason I haven't written for so long.
Of course, a lot of people ask us how we are doing and how Ann Carlyle is doing. And really the most succinct thing I can say is that I feel like most of the time, we are grieving in a healthy way. I think. Most of the time. We still see Angela, our counselor at Milla's House, regularly and Ann Carlyle has seen her counselor a bunch as well.
Ann Carlyle started school a couple of weeks ago and she is loving it. Thank God for her school and her teachers. She is keeping busy with ice skating and cheerleading for now...and of course wants to add violin, horseback riding, karate, obstacle course training (like American Ninja Warrior) and dance. Needless to say, we had to narrow the field a bit!
The other answer I give to how we are doing is a cliche but it's true...we are taking 1 day at a time...one hour at a time some days. It's something we've been doing for years now, so we know the drill. It doesn't always make sense, how I feel day to day, but I will say being outside and physical on our trips this summer has been such goodness for my soul. We enjoyed the ocean, saw whales, did tons of hiking and trail walking, climbed a few mountains, zip-lined, rode on boats on rivers and oceans, rode horses and ATV's through mountains, rafted rivers, did lots of swimming and some kayaking too. Side note: all of those things except for swimming were done not in Memphis but in places with oceans and mountains and lakes and rivers and in the case of Maine, all of the above. :)
Even though life feels a bit empty and quiet, I see the Lord's faithfulness and feel Him setting my feet on solid ground. I have found myself in the mire significantly over the last few months, but He is always showing up...even when I resist His peace and restfulness. That's what's so crazy...even when I want to stay in the mire, when I actually want to keep drowning, He pulls me out. Thank God His love for me doesn't depend on my love or mental strength or determination or whatever to pull myself out of the yuk. And morning by morning...He is there. His mercies are there. The pain is also still there and the loss and the absolute grief but again, He's there too. And that is something really, really, really big. Life-changing, life-giving, life-saving, life-sustaining big.
Thank you all for asking after us and caring about how we are doing and for reading this. :) It means so much to us to know we are still surrounded.
I'm going to wrap up now - I feel a bit ramble-y and to be honest, it's hard to bring all this to the surface and put words to it. I'm not sure how much I will be writing from now on...might be a lot, might not. But in any case, I have to say it again. THANK YOU from the bottom of our hearts.
Much love,
Dana
PS - Some of y'all may have heard this already but Frazer broke his collarbone a week and a half ago, had surgery to fix it last week and is doing great.
PPS - I have to include a picture my sister found the other day of me and Milla and Elle. Elle is fresh. I think this was our first day home with her. Milla is 17 months old. (Ann Carlyle had juuust turned 3 years old, but who's counting. Our house wasn't utter chaos at all from that point on. Nope.) Anyway, I love the picture. I love Milla's chunky, chunky hand on Elle's back and I love that Elle's eyes are fixed on Milla's even though she is just days old. I love everything about it.
We are Frazer & Dana Gieselmann - we have 3 girls, Ann Carlyle (10yrs), Milla & Elle. In Aug 2013, Milla had her first seizure just before turning 3yrs old. We started this blog primarily to give updates on Milla's condition. In Oct 2014, we learned that Milla had Batten Disease, a rare & fatal brain disease. A few weeks later, we learned that Elle also has this disease. Milla passed away Nov 26, 2016. She was 6 years old. Elle passed away May 4, 2019. She was 7 years old.
Wednesday, August 28, 2019
Tuesday, May 14, 2019
May 14th
I feel compelled to check in this morning although I don't have much to say. I'm hoping the words will just come out as I type.
We are still very much in shock. It doesn't seem real. Nothing is normal. And though we are thankful for the rest and deceleration of life's everyday demands, we feel like we are drowning a bit in the vastness of our days.
I catch myself trying to be efficient in errands or tasks and realize with a sinking heart that it isn't necessary anymore. My calendar is clear and my arms are empty. I don't need to take a 3 minute shower. I don't need to think ahead and pull meds and gather supplies and plan for a 20-minute routine just to get out the door.
Almost 6 years ago, our lives changed forever. End of August 2013...Milla had her first seizure. She and I rode in an ambulance down to LeBonheur. And May 4, 2019, Elle and I rode in an ambulance to our house from LeBonheur so that we could hold her in our arms at home as she met Jesus face to face.
How has it been 6 years of fighting this awful disease? How did we endure? How are 2 of my babies gone? It's a fog right now that I just can't seem to see through. I can't get my bearings. And my brain and body are physically fighting the reality of it. The weight of it is too much to bear so for self-preservation, I remain in the fog. I have no choice. It is involuntary. I feel the need for flight. Fleeing from all of the sorrow, from this house even.
I need to tell you all how utterly beautiful Elle's service was. The Holy Spirit was present. He moved and was.in.that.place. At some point, when I get a copy, I will figure out a way to post it online. Jesus be praised. I want to yell it from the mountain tops...ALL GLORY AND HONOR BE TO GOD. May all people see Him and be drawn to Him through Milla and Elle's little lives. Oh how we long for that.
I think I will sign off for now although I think it helps to write. Thank you for listening. Thank you for loving us. I have so, so, so many thank-you's to say and give to people. I will spend a lifetime doing so.
We have witnessed much. And much beyond our understanding.
And the Lord, it was He that did go before thee; He did not fail thee, neither forsook thee.
Much love,
Dana
Sunday, May 5, 2019
Elle's Service Schedule
We want you all to know Elle's service arrangements are as follows:
Wednesday 5/8: Visitation 5:00-7:00 at Second Presbyterian Church in the Fellowship Hall
Thursday 5/9: Funeral 11:00 at Second Presbyterian Church with graveside service to follow at Memorial Park Cemetery
Second Presbyterian Church is at 4055 Poplar, Memphis, TN 38111.
In lieu of flowers, please send memorials to Milla's House.
You can visit https://baptistgriefcenters.org/center/memphis-tn/ to give or send to:
Baptist Centers for Good Grief
1520 W. Poplar Ave, Collierville, TN 38017
Saturday, May 4, 2019
Friday, May 3, 2019
5/3 Update
Hey all - Elle had to be intubated around 4am this morning after a very long and distress-filled night. Elle got into respiratory trouble pretty quickly last night after I sent the last update.
She is mildly sedated and has been made very comfortable today for the most part. She has finally gotten some rest that she needed although she is still very, very sick. Please pray for a stable night tonight specifically.
We are so grateful for you, your encouragements, your support, your prayers, your love.
Rock of Ages, cleft for me - let me hide myself in Thee.
Dana
Thursday, May 2, 2019
5/2 Update
Hey guys - so we are still in the PICU for tonight.
Viral results came back positive for adenovirus and parainfluenza virus. Basically a couple of viruses that may not even affect me and you but for her, it can cause pneumonia and breathing problems. So those yucky bugs are our culprits.
She made a little progress on her oxygen needs but not as much as we had hoped for today...but she is still on the high-flow binasal cannula that she has been on. Her chest X-ray looked about the same as it did when she got to the hospital yesterday.
She has a super low platelet count and a couple of other things in her blood work that are 'off' but all those things are probably due to infection. They are keeping a close eye on things though.
She feels pretty crummy and needed some morphine this afternoon to take the edge off of her pain...it worked well so I'm glad she has something that helps her rest.
She's not the most stable respiratory-wise in the last hour or so. I'm waiting on the doctor to come in and look at her.
Please continue to pray for Elle's comfort. We cannot stand to see her in so much discomfort and pain.
Thank you!
Dana
Wednesday, May 1, 2019
Elle is sick again :(
Hey guys. So we are back at LeBonheur as of about 11:00 this morning. Elle hasn't been acting 100% the last few days but started getting a lot of chest congestion yesterday afternoon. Her lungs got really junky and she had some diminished breath sounds primarily on the side where she had all the pneumonia and chest fluid a few weeks ago. We put her on oxygen at home last night, did extensive breathing treatments and closely monitored her. This morning she got more and more labored with her breathing and then started to drop her sat even on oxygen. She was pretty uncomfortable.
She has pneumonia but thankfully it is not a horrible case like last time. We are still waiting on test results to see if she has a UTI, blood infection, etc. but I'm optimistic that those will be negative.
They have her on high-flow oxygen - she did not have to be intubated (put on a ventilator) and we are keeping her off of CPAP for now, although if she gets unstable on the high flow binasal cannula (that she is currently on), then we will have to step it up.
We are still down in the emergency room but they will be moving us to the PICU at some point for the night. So we will stay tonight and just see what is happening tomorrow...might move her to a regular room (non-ICU room) or go home if she is stable enough and her oxygen needs decrease. But we really don't know what tomorrow will look like at this point.
Thank you for standing with us and continually praying for us. I was able to talk to Ann Carlyle at school during her lunch break and she is scared. We are too. Pray that God's peace would envelope us. I will say that Elle is much less sick than she was a few weeks ago, and hopefully she will continue to stabilize and improve quickly.
Much love!
Dana
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