I recently went LIVE on the Rare Sisters FaceBook Page to answer some FAQ's that we get. Here it is in the written form.
How are the Girls?
In a lot of ways, they are still just our lively little girls. They are sisters, and they both play and fight like sisters. Some of the biggest struggles and notable changes because of Batten are affecting Cecilia. Her vision is declining rapidly right now. We can tell that her sight is limited. We see her running into things and people often. She is much more cautious in unfamiliar environments, and she watches shows with the iPad pressed up to her nose. Behaviorally, we have seen a lot of changes for Cecilia. We have experienced a lot of temper tantrums over little things, like the "wrong" color of plate, or the "wrong" juice. These temper tantrums often turn violent with throwing things, and hitting/kicking. She doesn't know that she is doing this, and she doesn't know her strength. She doesn't have the cognitive ability to work through the problem, and have the patience to deal with it. Jon and I often find our selves in a difficult place with it, because we have to protect the other children and ourselves from her aggression, while still trying to calm her down. Another physical change we are seeing with Cecilia is that her feet are starting to turn inward when she's walking. Sadly, we have learned that this is the first sign of a mobility loss. Her posture is really starting to suffer; she can't sit for long period of time or stand for a long period of time. Riding the car is very difficult. She will try to prop herself up on her sisters seats, or slump over or recline way too much. Both Cecilia and Lilly are about at a Kindergarten Level across the board: academic, cognitively, socially, etc. We often joke that we have Kinder Triplets right now because Nora is going into kindergarten, and C & L are stuck there. As far as school goes next year, Cecilia and Lily are going to be at their neighborhood school next year which is Mieklejohn, but we are going to keep Nora at Woodrow Wilson for kindergarten next year. We wish we didn't have to move Cecilia and Lilly out of WWA, we've had amazing teachers and staff that have helped our girls so much, but the reality is that the curriculum and the academic rigor of Woodrow Wilson is just too much for them and it's not fair to them to keep them at that level where their peers are so much more advanced. Not that they won't face this at the new school, but it should be relaxed a little bit.
How is the house?
The house is great. It has been a huge blessing, and we are feeling more and more settled every day. In a lot of ways it feels more like home than our last house did, which is kind of odd but I'll take it. I love having the ranch floor plan, it is absolutely exactly where we are supposed to be. Our neighbors are amazing!
Are Beth's parents living there yet?
Not yet. My parents will be moving to the basement, but first it has to be finished. We are finishing our part of the basement now. We are keeping one room, a powder room, and finished storage. The rest will by my parents home. It will be a totally autonomous home with 3 bedrooms, 2 baths, full kitchen, laundry, and separate entrance. The plan is that they will move down in the summer of 2019.
Are you traveling this year?
Yes! We have already been to Disneyland, and currently Cecilia is in Pennsylvania with Mamma and Pops. There are currently 7 more trips scheduled this year: North Carolina, Disney World for Cecilia's Make-A-Wish Trip, Lake McConaughy, Washington State, Roundup River Ranch, the NIH in Bethesda MD, and finally, Hawaii for Lilly's Make-a-Wish trip. The trip to the NIH in Bethesda is for a CLN3 study that is being done. The girls are going to endure a week of medical study and tests for research purposes specifically for CLN3 Batten disease. We've heard a lot of really good things about this study, process and the hospital. We've heard from other CLN3 families that have done this and they have really positive things to say about it, and that it the kids actually really enjoyed it, as much as possible. So, this year we are really trying to travel to the places that are require hotels and make those memories and then hopefully next year the girls are still able to travel and we can travel to stay with family and have more "home bases". Thank you to anyone who has donated to make it possible for us to travel and make these memories.
How are you (Beth & Jon) doing?
There's been a lot of talk on social media right now about anxiety and depression and I'd be lying if I said that we're not having anxiety in a little bit of depression with all of this. But, overall, I'd say we are managing it. Jon and I have our own inside words and phrases that we use with each other. We often referred to each other as the A-frame. We will often come together and lean on each other to support one another. Its a way of saying, I'm falling, or failing, or breaking, and so are you, but together, we can still be strong for our girls. Another one is KIF: kicked in face. There are days and moments that we absolutely feel like we've been kicked in the face. For example, the end of school was really painfully hard for us in so many ways. Other kids are being celebrated and given accolades, we get to see how much they've grown and learned. But for us, we cannot help but look at Cecilia and see that she's slid back so far this year and she has not grown, and her vision has declined, and she's not advancing academically. Its a KIF. It was hard to see so many graduation photos, and know that our girls will probably never reach that milestone, and if they do make it to that age, it won't be in a cap and gown. Its hard to hear them talk about "when I grow up..." THAT is such a KIF. Its summer, and summer it's hard for me specifically because all the kids are home and it's intense. I'm at the point in my motherhood journey where you feel like having an almost 9-year-old and a 7-year-old and an almost 5-year-old we should be in that "glide phase". Where they're all fairly self-sufficient and can go to the pool and just let them hang out. But, I really can't because of their disabilities and that is hard. Its stressful to even think about hiring a babysitter just so that Jon and I might be able to go on a date; because, quite frankly, I don't trust a high school age babysitter with my kids because of the behavioral issues and medications and the possibility of seizures. It's just hard. It's a different. It's a different place we ever thought we would be in, but it's where God needs us to be for some reason and we know that he will qualify us to handle this. We are so fortunate to have our village of supporters, all of you included. We absolutely feel your prayers. The days that people say to me, "I don't know how you do it." I say, I don't know either, and it has to be because so many people are praying for us. So, I thank you for that. Please continue to pray for us. It's going to be a long road and I don't know what its going to look like in another year or five or 10 years.