Can y'all believe this? It's only been 2.5 weeks since my last update! It's a March miracle.
Elle started school this past week! She was worn out but a good worn out. Her first day, she had a field trip to the Art Project - an art workshop in midtown. She came home with paint everywhere so I know she had a blast. Wednesday, they had a wheelchair basketball game and pep rally that all the kids attended. When I picked her up at 12:30, it sounded like a massive dance party was going on in the gym. Thursday, they studied Italy. Friday, they had a Dr. Suess parade. That's a strong first week of school right there!
We are so thankful for Shrine School! Everyone there is so kind and truly want the best for these kiddos. Lots of smiles. Lots of gratefulness.
It seems that Elle is losing/has lost a good bit of eyesight the past month. She is doing ok with it - she doesn't seem too frustrated with things specific to vision - but it's a new stage we are entering into and there are challenges and there is a grief that comes with each bit of progression from Batten.
We also are seeing some different signs of dementia - some of these things cause her distress and some of these things don't. My prayers have always been that Milla and Elle would never not know who we are...that they would know our sound and scent and touch and that that would bring them comfort even when they can't see us and can't understand everything going on around them. And that the dementia would be a strange kind of blessing - that the clouds of confusion would wrap them in joy and the presence of Jesus and the knowledge of His deep, deep love for them. Praise God we saw this happen with Milla...and now we continue those prayers for Elle.
It's a weird thing. People ask me how Elle is doing and truly, I've been at such a loss of what to say these days. She is not sick with an infection, her seizures aren't totally out of control relatively speaking and she's a pretty content kid most of the time. All these things we are so, so grateful for! But we also see disease progression every single day...some of which are such small progressions but we recognize so much from Milla's journey.
I've spoken of this before (not sure if I've written about it) but seeing these things is complex. It's scary and heart-breaking to see these same things happen to Elle and we know much of what is to come because we have lived through it already. And sometimes my courage and fortitude wavers as I have to walk this road all over again and too, while I am still very much grieving Milla. It is crazy how much Elle can look like Milla. I mean, I have to remind myself that I'm not holding Milla. And there's a part of my heart that loves seeing an actual physical body that is such a copy of her. My heart swells for just a moment as I see Milla...just for a moment...because I miss her face and her body and her hands and everything about her. But then the depths of grief crash into me and my body feels actual pain from the loss of her.
We are still without a night nurse for Thursday, Friday and Saturday nights but we've had substitute help most of those days the past couple of weeks. Please keep on keepin' on with praying for us. Thursday night, Frazer was out of town and I was up all night with Elle and I'm STILL feeling it. You'd think I'd have some kind of tolerance built up by now, but instead I think it just chips away at me.
When you think to pray for us, please keep a dear family from Memphis in your heart - the Masons. Their little girl, who had Batten Disease, died a week ago. Our hearts just break with them. We also know that while nothing can remove their pain and fix their utterly broken hearts, there is a supernatural balm that covers us from our God through the prayers of others.
Spring break is next week - can't believe it! We, as a family, are not going anywhere but Ann Carlyle and I are doing to road trip to Birmingham to see my family for a couple of days. We are both excited but Ann Carlyle is super-duper excited. :) Please pray that everyone stays healthy and that we can go and have a good time there.
I am thankful to be able to take Ann Carlyle away even just for a couple of days. She also sees the way Elle mirrors Milla and she feels the loss (and anticipated loss) of her sisters so much...it seems she feels that loss even more-so the older she gets. Please pray for her little heart. She has sacrificed and continues to sacrifice so much.
I'll wrap up with a verse that I read this morning at church...
"And after you have suffered a little while, the God of all grace, Who has called you to His eternal glory in Christ, will Himself restore, confirm, strengthen and settle you. To Him be the glory and the dominion forever and ever. Amen." (1 Peter 5:10-11) We live not for ourselves and for this world, but for Him and for the world to come. I was reminded this morning yet again that our suffering is not wasted. It matters. Praise be to God!
May God bring you comfort today, wherever you are, whatever you are going through. May you feel the deep, deep love of God. May He wrap you in His light and warmth on this cold and dreary day. Much love from the Gieselmanns!
Dana