Tuesday, October 23, 2012
Ella LOVES going to our church Fall Festival every year. Pastor Don has been announcing it in church for weeks and each time he mentioned the name Ella would nudge her dad and get a big smile on her face. Ella’s parents love going too. It’s a great time to talk with our friends and catch up with people we don’t see very often. In fact, every year we run into someone who we know outside of church and they were just passing by the church and happened to see a festival and decided to stop. Also, every year Joe and I invite many of our friends and neighbors who either attend another church, or don’t attend church at all. One of those neighbors we invited 3 years ago and now they are active members of our church and their boys even attend the church preschool.
All of this to say that we love the Fall Festival!
Saturday night Joe told Ella that we would be going to the Fall Festival the next day and she got so excited! She started talking about her favorite things: cotton candy (I am not surprised that this was first on her list), snow cones, all of the fun games, the train, seeing her friends dressed up, and the list goes on. She kept talking and talking about the Fall Festibull.
Sunday morning at 3 am Ella woke up crying. When I went in to check on her she said that her eye hurt. This was not a good sign. Kids with EB get corneal abrasions very easily, and for Ella, she always gets a really bad one when the weather starts to change. I’ve been keeping her eyes extra lubricated with Refresh PM, but most of the time that only helps a little. She still, eventually, gets a corneal abrasion and spends at least 4 days sitting in our basement with all the lights off just listening to the TV.
After I put some ointment on her eye and got her settled back in, I went back to bed and prayed that she didn’t have a corneal abrasion. I prayed that this was some sort of fluke. Unfortunately when Ella woke up at 8 am she still wouldn’t open her eye, her eye was puffy and red, and all she wanted to do was lay in bed with her eyes closed. The first words out of her mouth were, “But how can I go to the Fall Festibull if my eye is hurt?” I had the horrible job of explaining to her that she couldn’t go if her eye was hurting her, but that we would find another fun Fall Festival to attend.
I did what moms like me do…I cried. How is this even fair? This poor kid has to deal with so much and all she wants to do is go to the Fall Festival. Of all the days for her to wake up with a sore eye, and today is the day. If it was Monday I wouldn’t care. I’d take her out of school and keep her home for a week if I had to, but it’s not fair that she has to miss one of her favorite events of the year all because she has this stupid, unforgiving disease.
So I spent the next couple of hours praying. Praying that if we stayed home from church and gave Ella some rest, that maybe by 4 pm we could put a patch over her hurt eye and at least she could attend the Fall Festival and get her cotton candy, even if she wasn’t able to participate in the games. Soon she decided that she wanted to sit up and listen to her music while Joe fed her some soup (she hasn’t mastered the art of eating with her eyes shut yet). After a couple of hours she was sitting in bed and Joe was sitting in the rocker in her room. He looked up and Ella was sitting there with a big smile on her face and BOTH of her eyes open! Joe freaked out so much that he spilled his coffee. Of course they called me into the room to show me the great news!
Now I know most people would come up with some logical reason as to why her eye suddenly stopped hurting. The truth is, I don’t care what the reason is. We are choosing to see this as a special gift God gave our family. Even Ella said, “Mommy, God made my eye better so I could go to the Fall Festibull.”
The Fall Festival was just as awesome as Ella remembered. She got to do all the fun things she did in previous years, but this year we knew the ropes so it was even better. The past 2 years she’s been on the last train ride of the day, which means she got a shortened trip. This year we were on the 2nd train ride of the day, so she got a nice, long ride. Ella played all the games she wanted to and even watched daddy play some of the bigger games. She didn’t want to get her face painted, but was more than happy to choose a design for mommy, so I spent most of the night with a pink heart on my face (which unfortunately didn’t come off as easily as I was told). Yes, she got her cotton candy and even shared 2 snowcones with us. Mom and dad got their popcorn and hot dogs.
We all had a great time and Ella was even dressed up in her Halloween costume, which was a big hit. Yes, I have pictures and will post them soon. But for now, I’m so thankful for what we believe was a miraculous healing on Ella’s eye, and we’re thankful we were able to be there.
Monday, October 8, 2012
We are now well into the swing of the school year. Ella is adjusting and getting better every day. She still gets nervous in the mornings, but by the afternoon she has a smile on her face and says she had a good day. Every afternoon I ask her what her favorite part of the day was and every day she says, “Going outside.” My friends who also have kindergarteners and I have compared notes and we all experience the same thing…we have to pry information out of our children. I now have Ella tell me her top 5 activities of the day. By the time she his #3 she’s on a roll. Her Encore class for the day (either PE, Art, Music or the library) is always one of her top 5. Recess is always another.
We have now entered the phase of homework. Each Monday Ella comes home with several worksheets that need to be completed by the following Monday. She gets 4 worksheets (front and back) so my plan is to do one sheet each night M-Th, then have Friday night and the weekend off. This week we did pretty well with that plan. She just has one line of one worksheet to finish up this weekend. The good news is that usually Ella loves doing her homework. She is so proud of herself when she finishes the work. And I have to be honest, there are times that even I’m impressed with how much she knows.
Joe and I are official members of the PTA. I went to the first PTA meeting last week and have already volunteered my time to work at the upcoming book fair. I’m not sure how involved I’ll be, but I’m glad to be a part of the group.
We went back last Friday to have Ella’s hemoglobin checked again. She is now at a 10. While not as high as it has been, this is still great news and meant she didn’t have to get an IV. Her veins get another month of rest. What was encouraging to see was that after her blood check I had planned on taking Ella back to school. Since we didn’t know what Ella’s day was going to be like, her aide had taken the day off and was unable to come in for the afternoon, so the school had found someone else to help her for the day. Ella was nervous about being with someone new, so I gave her the choice of either coming home with me to spend the rest of the afternoon, or stay at school and try it out with a new helper. Let me just say that I was being completely sincere in my offer. At this point Ella was only going to be in school for 3 hours, it had already been a long day with an important doctor visit, and I honestly didn’t want to put Ella (or myself) through any undue stress. I wasn’t trying to use reverse psychology on her or anything, I fully intended to let her skip the rest of the day and just hang out with me. Ella, completely on her own, decided that she needed to be as brave as a princess and try going to school with a new helper. She said, “Mommy, I think it would be good for me to stay.” I was so proud of her for making this decision. It was not an easy one for a girl who likes for things to be predictable. I really think she wanted to stay and get her Friday prize from the treasure box.
Something I would appreciate prayer on (and this isn't new) is that Ella would start making some friends. She's still very shy and only responds when others initiate. Since she's in a new school with all new kids, none of the other kids are really sure how to respond to Ella. They, obviously, tend to gravitate toward other kids who are outgoing and will play with them, which means that Ella is unintentionally left alone. I'm not sure if it's all EB related as to why the other kids are hesitant to play with her. I think there are a lot of factors at play and I just pray that one little girl will initiate contact with her and be willing to look beyond Ella's shyness to be her friend. I also continue to pray that Ella will come out of her shell even more and start to reach outside of her comfort zone to initiate friendships with other kids.
I still question every single day whether or not sending her to kindergarten was the right decision. Some days I want to pull her out and home school, other days I want to call the preschool and see if they will take her back, and on other days I want to start looking for a smaller private school. We have committed to seeing this through so Ella isn't going anywhere in the near future, but I still can't help but wonder if we're doing the right thing.
That pretty much hits the highlights of the last few weeks. If I don’t blog that usually means there’s nothing too exciting going on. Maybe things will pick up now that the holidays are approaching.