I'll start with the great news...we got our closing for the new house pushed back a week!!! This is GREAT because the new house will not be ready to move into by next weekend. We've been stressed about it all coming together in time for the move next weekend and now we have a whole extra week!
We've had things go wrong seemingly everyday but then the Lord provides amazing things every single day as well.
We have had such an outpouring of help and support - it is humbling and wonderful and although I am brokenhearted by Milla's diagnosis and so apprehensive about getting results back from the other 2 girls' test, I see His hand moving and providing for us everyday and I truly do not feel abandoned by God.
So we took the Ann Carlyle and Elle to LeBonheur last Thursday to get their blood drawn to send off for the genetic test to see if they have the same disease as Milla. And while 3 of us still had to hold Ann Carlyle down, she did way better than I thought she would (thank you for the prayers)! And Elle was pretty oblivious most of the time (and she's the tiniest little wisp of a thing) so she was a much easier patient. Their tests should take 4-5 weeks to get the results. It's excruciating to wait and wonder and worry. I try to keep it on the back burner and not think about it much, but of course, it's on my mind a lot. Yet another reason I am glad to be so busy with the renovation and moving.
Also last Thursday night, someone broke into the new house and took all the faucets for the kitchen and 2 of the bathrooms, some tile and a huge bag of coats and fleeces, etc that I had taken over there back in August in order to de-clutter before listing our Midtown house. (I thought we would be in the new house well before it turned cold outside - crazy me!) Needless to say, we were pretty discouraged. Fortunately, they didn't take some other things that were there (and un-installed) like the stovetop, toilets, a pedestal sink, etc. So it could've been a whole lot worse! But still super discouraging.
HOWEVER...while all this was happening over the weekend, we also had people providing so many things for us. Wonderful, amazing, everyday things like food and picking up things at the grocery store and childcare (aka lovin' all over the kids like crazy) and of course, prayers (treasured, so treasured)...but also a place to stay should we need it if we have to move before the house is ready...a cleaning service for the new house after all that construction (which it desperately needs)...help with the yard...help with picking up Ann Carlyle from school so Milla can nap longer if she needs to...a packing service to come pack EVERYTHING...moving expenses taken care of...and even a lifestyle photo shoot for our little family! And so, so, so many offers to help wherever it's needed.
I'm leaving out a ton of things, but I'm telling y'all, every step of the way, God keeps saying, "I am here. I am with you. And I love you." He has seen all these little worries and desires in my heart which I haven't even prayed about (just worried about) and provided for them directly. He is using y'all to show me that He is with us and providing for us...over and over again. God is good and He is kind and He is merciful. We so desperately need these reminders in our lives - every day - multiple times a day.
Milla had a couple of good days last week but she isn't doing so great this week. We see her symptoms slowly getting worse, mainly her walking and lack of steadiness, all-over weakness (she has trouble holding herself up at different times in the day) and being zoned out (and of course, her seizures). And this is typically how her disease progresses...things will get worse and then plateau and/or she'll have some good days and then get worse again, etc. It's a brutal disease and we are still trying to wrap our heads around all this. Dr. Wheless changed up her med dosages today, so we will see if that helps anything.
So please continue to pray for our hearts - we are still trying to process all this (but also feel like we don't even know how in the world to process it). We feel numb at times and other times feel every possible emotion. As Frazer says, there is just no context for this. It is a discipline we have to practice to take one day at a time and a discipline to say, God loves us - and our hearts will choose to say, I will trust You, God. Like I've said before, there is nowhere else to run, nowhere else to hide...there is only the cross. There is only the fact that I'm a sinner saved by grace - saved by Jesus' death on the cross and resurrection. He has triumphed over sin and disease and death. He will make us whole. And until that day, He will sustain and provide and give us a haven where we can hide and rest while the storm beats against us.
A friend sent this to me last night -
"One or two realities will always be true...Jesus will either extinguish my fear or hold me in the storm, and in both cases, my chant is clear, my confidence in singular...He has overcome! Peace is not a feeling. It is a reality you come to know when trembling in the arms of the One who is peace. Peace is a person."
We don't feel like everything is 'okay' but we feel Peace.
I have told many of you this - knowing we are not alone is helping us in ways I just cannot express. So again, thank you for emailing, texting, calling us - for helping us and hugging us and telling (and showing!) us you love us. For praying so faithfully and sending us the word of God to encourage us. Thank you for hurting with us and crying with us. My cup runneth over. We are so, so thankful for you.
Much love from the Gieselmann 5 :)
Dana
PS - Know that every single word that any of you have sent has been stored away in my heart. I hate that I haven't had the time to respond to every email or phone call but know, please know, that we treasure every word.
And PPS - I am going to make the blog public so now anyone can get to it. It is thegieselmann5.blogspot.com. And if anyone wants to be on the email list, feel free to let me know.