Summer and Fall 2022

For awhile it felt like there wasn't anything to update, and now so much time has gone by that there are lots of little updates.  It was a difficult summer- it felt like nothing was clicking.  We never connected with a home health aide- I called five agencies, and no one had anyone available.  We connected with two people just by asking around, and neither of those connections panned out either.  Our family and friends have been innovative and take Eva on various playdates, and that gives the rest of us some time to ourselves.  

We tried medication to calm Eva down, but instead it made her more aggressive.  She would get frustrated and bite me at times.  She was not sleeping well- we talked with a psychiatrist at Nationwide who said her night terrors were probably a reaction to losing her vision over the course of two years.  She said one on one help was probably what Eva needed because she is still trying to make sense of her new world without vision, and trying to process her constant changing reality.  This was hard to hear, but it was nice to have some explanation for her outbursts, and somewhat of a resolution.  By the end of summer, Brendan and I were tapped out.  I didn't really feel like updating when all I had were dead ends and points of frustration.

Late summer, we found out Make a Wish was doing a walk at the beginning of October at the Cleveland Metroparks Zoo.  We signed up, and Brendan posted about it on Facebook and invited our friends and family to join us.  We raised over $8,000 to give towards another child's wish, and that was a bright moment for me.  It felt good to give back, and it was awesome to see the donations from friends and family and from anonymous donors.  It was also nice that Eva understood that we were giving back, and agreed to do the walk to help other kids.  

The afternoon of the walk....Eva got crabby.  Very crabby.  Unbearably crabby.  After a few hours of crying on and off, I knew something was really wrong when she didn't want to go into the store to buy some candy.  She finally gave us a clue as to what was wrong when she said her cheek hurt.  We knew she had two cavities, and we (mostly Brendan) were talking with a pediatric dentist to take care of them.  Basically, the problems with the teeth escalated, and she was in horrific pain for four days before getting any relief.  Eva is afraid of the dentist and pushed his hand away before he could do any work, so she needed to be sedated.  She had an appointment at St. John's, but they cancelled and said she should go downtown because of her condition.  Brendan and I were so frustrated.  It was the first time we struggled in some way to get care for Eva, and it made us feel like she is really fragile.  After four days of Tylenol and Advil, a dentist agreed to pull the tooth causing most of the pain without sedation- they calmed her down, numbed her, held her in a hug hold, and pulled it out.  She had immediate relief.  She was excited to find an Ariel doll under her pillow from the tooth fairy the next morning.  In our search for a solution to her toothache, we had called Nationwide and scheduled an appointment with their pediatric dentists to have both teeth pulled.  When we told her we will still driving to Columbus to have the other tooth pulled, she was elated, and couldn't wait to see what doll the tooth fairy left next...I do not think the tooth fairy thought that far ahead with her generosity with the first tooth!  The Columbus appointment also went well, but it was so nerve-wracking to have her sedated.  They ended up pulling a second tooth, three baby teeth, and putting silver caps on three teeth.  The stress all of this caused was like nothing I have experienced.  Physically, it took me a week to calm down to where my heart wasn't racing, and I could sleep soundly.  It was a wild ride.  They said she has poor teeth enamel and we have to limit her sugar intake.  Eva looooooves candy, and often sneaks candy out of the pantry- she even showed me that sometimes she sneaks it, and then hides it in my nightstand drawer for later.  We are now emphasizing brushing after eating candy to prevent further problems.  The tooth fairy is tapped out.

Around this time we started her on a new medication to control impulses, and the aggression went away.  I'm happy to report that has been a few months since she has bitten me, and I hope it stays that way.  She seems calmer, and is sleeping better.  She is a little weepy, but that has gotten better as well.  We had her IEP meeting, and Brendan and I made the difficult decision to tell the teachers that we are ready to let go of some of the academics and focus on Eva's happiness at school.  She was coming home from school emphatically telling us that she hated school.  This is nothing new- Eva has been saying she hates school since preschool.  During remote learning she cried, "Why did you sign me up for school? WHY?" The reluctance towards school was consistent, and she really did not like going.  She did not like math class.  We decided we wanted to push her less and meet her at her level.  At her IEP meeting, her Braille teacher was emotional as she recommended they stop learning Braille letters, as Eva was forgetting letters she knew last year.  She will still have exposure to Braille, and tactile learning, but the alphabet and reading Braille are no longer goals.  She also gets physical therapy at school now because there were multiple times her bookbag was throwing off her balance and causing her to fall.  Then, we moved her out of regular math, and she is now in a special education math class.  These were all gut wrenching at the time, but now that it has been implemented, she is MUCH happier.  She loves her new class in the afternoon, and they have done fun things like carve pumpkins and count the seeds. She has made new friends that she talks about all the time, and all of the changes were for her benefit.

We have also been more open with Vivian and Everett.  We told them that she has Batten Disease, and they both know that she could die as a teenager.  At this point, they have seen lots of changes in her, and they see how she behaves, so we wanted to give some explanation.  Everett asked what happens if friends come over and tell other people at school how Eva acts.  We talked about how real friends wouldn't do that, but it was not a question I was expecting.  It's definitely good to be open with them so they can ask what they need to, and we can address their thoughts.  They are both really good with Eva, talk to her calmly when she is over-excited about something, and will do activities with her when we ask.  It is amazing how resilient they are.  They can block her out and still have a good night even on Eva's worst nights.  Everett likes to be a helper, and Vivian is compassionate.  We are very lucky.  

After surviving the bad meds, the toothache nightmare, and then the huge changes in her IEP, things have finally settled down.  She turned 9 on Sunday, and she had a great birthday.  We did a family party the week before her birthday, and then we went back to Give Kids the World for her actual birthday.  Give Kids the World is the resort we stayed at for Eva's wish trip.  It is a magical place for families with children with critical illnesses.  We are allowed to visit for the day twice a year.  We are considered a welcome back family, and all of the volunteers were so nice and said, "Welcome home" to us when they saw us.  We ate breakfast, and then the kids got to do pony rides.  We had ice cream, went to the pool, and then Eva got her nails done by volunteers at the spa.  There is even a magical wall of cubbies that opened up for her, and she was able to choose a birthday present.  There was an older man volunteering at the gift shop when Brendan and I went in, and I told him how much Give Kids the World means to me because the world can be so hard for Eva, and for our family of five to go out and do things.  Basic family activities can sometimes prompt meltdowns, and prove to be difficult.  Give Kids the World is designed for kids with disabilities, and it feels easy to give Eva a good day.  The volunteer said that they take away all of the outside stress and planning so that family can focus on the most important thing- family.  He says that the magic is always there, they just take away the outside stuff so we can see it and feel it.  He also said that he volunteers in honor of his nephew, who has a star on the ceiling of the Castle of Miracles.  I wanted to tell him what a beautiful tribute to his nephew that he volunteers at Give Kids the World, but I couldn't get the words out.  I felt the tears, and didn't want to cry.  

Next time I won't wait so long to update- there were too many updates, but I am happy to end on a good note, and say that she had a great birthday, and I feel content with where she is at.