Wednesday, October 17, 2018


It's been a long time. I have debated when to write, what to write, how to write.

Yesterday Scarlett turned 8 years old. I am always nostalgic on her birthdays. I miss her baby days, my baby days with her. I miss the tiny clothes, naps, and splashy baths. But I love this big girl, too.

We celebrated her birthday with family and friends and princess.

Scarlett and Rapunzel, both going through a bandaid phase

It's been so long, but a lot has not changed. She loves stuffed animals, baby dolls and animals crackers. Her favorite color is still purple, but she picks pink things most of the time. She loves to sing - she got a karaoke microphone for Christmas last year and loves to rock out with her favorite Disney songs ("Try Everything" by Shakira from Zootopia is #1 by far.

First day of first grade!

Now she has discovered a love for clothes. She loves to dress up, or change outfits several times a day. She is particular about matching pieces that she likes together. She will choose a dress over pretty much anything else, unless there is something new - a new outfit wins over anything that has been worn before. She loves to shop online with me, choose something and then have it delivered - a very dangerous game! When any package arrives, she is ecstatic, and can't wait to see the package opened - only to be devastated when it is something boring (read: anything not for her.) As soon as she has a great dress on, you will find her dancing like a ballerina or setting up a show with her karaoke machine. She made a splash at school this year bringing her ukulele for an impromptu show.  She is a performer!

Dinosaur head. Backpack. Christmas leggings. Daddy's boots.

Medically, she is stable. Most importantly, no change on annual MRIs. That puts us at 5 years off treatment, a big milestone. We removed her g-tube in May after not using it for a full 6 months. After years of keeping it from being pulled out and having an emergency replacement on hand at all times, we pulled it out ourselves at home on the couch and it healed up almost completely within a day. She still makes a terrible mess when she eats, but she gets enough calories in to maintain her weight and enough liquids to keep her hydrated. It's not perfect, but it's enough to build on without a tube.

The biggest challenge that we deal with is behavior. She is relatively happy and compliant most of the time, but when she is unhappy, frustrated or confused, she doesn't really have the language to express herself. Instead, she acts out by hitting, pinching or biting, not to hurt but to get your attention. She resorts to biting her own hand, which has caused extensive skin damage over the last few years. Thankfully she has eased up enough that skin has healed a little and is not as cracked and bleeding. It is painful for her, but she can't stop herself, and we can't take her hand away (though we have tried gloves and even asked about a cast.)

She als elopes; if she sees an open door, she goes for it. She has escaped our house several times, n matter how many locks we add (we currently have a deadbolt with a sensor alarm, a chain lock up high, and a Ring doorbell with motion alarms). We have had to call the police twice when she has escaped and we could not find her. Over the summer, she escaped from her camp and was found running down the road after kicking off her shoes. Even our yard is not always safe; she has pulled down sections of the fence to go to a neighbors yard and kicked out a panel of the gate to squeeze through and run down the street. We have alerted a of our neighbors to PLEASE take her hand and bring her home if she is out on her own. We added a Jiobit GPS tracking device to her daily outfits. It allows us to track her on our phones...if she will wear the tag. We were doing well until this week, when she tossed it somewhere and it disappeared (we think it got broken and will no longer connect to the app.) It keeps up up at night - every sound makes us jump and check all the doors. We can barely carry a conversation when we are out because our heads are constantly swiveling around to keep her in eyesight. I hope she outgrows the desire to run soon...there are only so many ways to keep her in as she gets taller, stronger and craftier.

She made it though kindergarten last year. It wasn't always easy, but we made some adjustments along the way. After much discussion with various doctors and other parents of brain tumor survivors, we started Scarlett on a low dose of Adderall for attention. It doesn't fix everything, but it helps her be a little more aware of herself and what is happening around her. It helped her stop having accidents at school (because she was ignoring her body's cues), gave her the focus to get socks and shoes on by herself and brought about some minor miracles of her noticing to put her plate in the sink or wiping her own nose. We are still tweaking dosages with her psychiatrist, but it seems to be an overall win for us all. The only real downside right now is that she is going through a loooong phase of waking up fully-dressed-in-princess-gear-at-3am early. We have an OK to Wake clock, a reward chart for when she stays in bed and we take turns to get up with her, but it's been several months now. We just want to sleep until 6 once in a while.

School has been a challenge for all of us. Last year, she attended the school where I teach. She was much adored by other students. She was figuring out the routines. Then, after we moved last year, her transfer into my district was denied and we made the last-minute decision to stop fighting administrators that were making our lives miserable and see what happened with our local schools. Luckily, it has been a great move for her, and while we are still fine-tuning her school needs, it seems to be working well for her and us. She knows a lot of words, and is starting to read. She writes her name and counts everything.

Over the last two years, we have been trying to get Scarlett connected with services and supports that will enhance her day-to-day life, give her independence as she is ready for it and help us connect with other kids and families. First, we found a camp that gives her weekends, and now full weeks, away. Via West is respite camp for kids and adults with disabilities. Scarlett gets 21 days each year of camp with a 1:1 aide, where she gets to do crafts, cooking, field trips and other adventures. She loves packing up her sleeping bag and going to camp - I don't think she misses us a bit.

We have been trying to get her into sports or classes for a long time, but finding the right class has been a challenge. We want her to have the experience of doing it "on her own" but most special needs classes through rec centers or private lessons are intended for the parents to be the child's aide through the class. There are some excellent programs in our area that are designed for kids like her, but there are long wait lists...we have been on the waitlist for a swimming program for more than 2 years. We just joined an equestrian therapy waitlist with an expected wait time of 2+ years. But we did recently find an inclusive dance class for the whole family and are getting registered with the Special Olympics in our area for the Spring.

The biggest thing that has happened for Scarlett over the last two years is that she is now a big sister! After her 6th birthday, we decided that we wanted to grow our family. We chose to go through the process to become foster parents with the plan to adopt. We were certified in February 2017 and got our first placement, a baby boy, in April. Over the next few weeks, we helped his doctors and social workers discover that there was much more support needed than was originally understood; we happen to have a very specific set of skills involving infant neurology, and we were able to help connect him with some very much needed services. We all made the decision that his needs would be better met in a different placement, so he moved that summer. It was overwhelming, exhausting and disappointing to have to say goodbye, but it was the right thing for him and us.

Right as we were learning he would be leaving, we found out that we would have to move. Were able to buy a house a few cities away, which was a welcome surprise and blessing - no more rentals being sold out from under us! A few months after we were moved in and settled, we reconnected with the adoption agency and told them we were ready to try again...and a few months later, they had a little boy that was ready to come live with us.
Daddy and little brother watching planes land

We will finalize his adoption next month. He is 3.5 and the sweetest, spunkiest little boy. He has adjusted so well over the last 7 months and is a complete joy. We can't share his photo yet, but they are so sweet together (unless they are fighting!) They are brother and sister 100%. 

So we are on to another year with more adventures and challenges. Scarlett is finding her way in the world and we are following close behind, trying not to get in her way. If you have hung in this long, thanks for caring to check in on our girl. I share on our Starring Scarlett Facebook page slightly more frequently than here, or you can follow me on Instagram if you want to see more.

Until next time (maybe not two years from now)....