I remember the 1st Christmas after the accident someone gave me a plaque that said "if the future seems overwhelming, remember that it comes one moment at a time". I can't tell you how many times over the years I have pulled that plaque out (I keep it in my bedside table) and read it. It has been a mantra. I remember in the hospital breaking down because I didn't think I would ever learn how to use her feeding tube, all of the medicines, how to care for this new person. It's hard to admit, but Payton felt so foreign to me--like someone I just met and I was grieving her so much. But we did it, we made a routine and started therapies and all the appointments. Soon the feeding tube was removed and we trucked along.

Then I was so worried about what would happen to Liam was born. How would she handle him? How would we manage. Again--somehow we figured it out. Next it was puberty, which she started early.  What if it effected her medications, what if she became unmanageable. But she got bigger and older and we adapted. 

This week we are going to have several "moments" Tomorrow we go to court for guardianship. Because on Wednesday Payton will turn 18. The accident happened when she was 31 months old (2 1/2 years). She is in her senior year of high school. On Thursday we will have her IEP (Individual Education Plan). We will be discussing what her future looks like. Tonight I think of all of this and it just feels overwhelming.

It has been a long time since I've written on her site, it will be lengthy but I'll give an update. Payton walks independently, though her gait is somewhat unstable.  From a cognitive or intellectual level, overall she has remained about a toddler level. This is what was expected with as the severity of her injury, you typically don't progress further from where you were when it occurred. Frankly, I can't stress enough, we are SO fortunate that she even survived. She has a lot of "scripted" language. This means that she has learned to say things like "I'm fine" if you ask her how she is, regardless of how she is. It doesn't necessarily have meaning. She has been able to learn tasks like stacking cups, putting things in the trash, taking clothes off, opening/closing a door--basic things.  She has eyesight, but will often feel around when doing things like Melissa and Doug handle puzzles. We will say "use your eyes" so she looks down. 

Our lives are filled with such amazing people. She has a Physical and Music therapist that come to our home to co-treat 2x a week together and 1x each independently. They are miracle workers. They push her and connect with her in indescribable ways. They set up obstacle courses for her to work on problem solving, mobility and balance. They sing and stretch her and she just melts in their arms. Music speaks to her soul, she sings along-there are some songs she knows all the words. Music is such a motivator for her. She has had both disciplines for years. The amount of progress and changes have been phenomenal.

She has a chiropractor that comes into our home a few times a month. It is just soft tissue movements, not the cracking one typically thinks of. Not going to lie, Payton can get a little fiesty during the sessions but we have seen so much improvement. He is amazing at getting to her level and finding the best time to sneak in to do his magic.

She has been going to hippotherapy once a week forever. She sometimes goes with school too. She sits up tall and says "walk on" and "woah" and "poop" (her horse goes a few times a session). They have her do puzzles, reach to grab things, pass balls, all sorts of things to have her use her core muscles. She just loves it. Often she will cheer on other riders on.  Horses just have a way of connecting with riders. I sidewalk with her and just love being a part of it. She is so happy on the horse.

She goes to school a little over 1/2 of the day. She leaves early to get all these therapies in.  We have been so blessed throughout the years to have so many teachers, therapists, aides and staff at school. Each one has just embraced the uniqueness of Payton and worked to find ways to help her reach her greatest potential. They continue to think outside of the box. Payton can be so "Payton". We joke because one thing we have learned is that she assigns roles to people. Often at IEPs or talking with school staff--we will say "how do you get Payton to... (example kick a ball). She does it great at home but wouldn't at school. They have always been so willing to collaborate to find what is best for her.

Now that she is becoming an adult some things will change. She will be able to keep some of her doctors but there are some medical things that will now be phased into the adult world.  If you have no experience know that this is really, really hard. In pediatrics there is soft touch and more centralized care. The next few years are going to be rough navigating this change.

There are new services she will be getting. We are excited to start 2 new day services that specialize in individualized care and goals. One is brand new but they have a lot of experience with brain injuries. One has staff that include familiar faces-teachers, aides that she absolutely love and are familiar with how to push her and help her succeed. We are so excited to see how these new additions benefit her.

This year has really been a roller coaster of emotion. It is hard not to compare her to her peers and think of how things could have been. I am so close with my sisters. I just know the relationship she would have had with her siblings, especially Kaylan, would have been so precious. Thinking about the permanacy of guardianship can feel so overwhelming--knowing she  will never be able to care for herself and will always need someone. I have to reflect on her journey to this point and remember it's a moment at a time. It can be so hard, but we will figure it out. I am so grateful that though it has been rocky at times, this path has been filled with the most compassionate, knowledable, helpful supporters. Everyone that has worked with Payton, family and friends we have always had or met on this road-- know if I inadvertidely didn't thank you, you have helped us so much and we are so grateful to you. Please say a prayer, send good vibes or a loving thought our way this week.  I promise to try to update sooner than last time :)