This marks week 5.
So Bailynn was trapped in the house for a little over 4 weeks before we decided to make a trip out, only because the skin has sealed back up. It has however not returned to it’s pre-swelling state. Bob and I cautiously took the girls and her to Qdoba and Sams last week. I think I ate my entire meal looking as if I was ready to flee the scene. I couldn’t even tuck my chair under the table, that was too definite. I shushed the girls and told them to eat faster – no lallygagging. I wasn’t trying to be mean, I was just trying to not push our luck! We gobbled dinner in record time and rushed through Sams (even ran into some friends at Sams). I would never forgive myself if this selfish act of freedom lead to more time stuck in her bed. When we got back home, I was as mentally exhausted as physically. Bailynn’s back only showed slight signs of irritation and fresh swelling from the adventure and the girls got to release a little cabin fever feeling with the escape. Then we got the news that my grandfather, my mother’s father Michael Hornick, passed away after years of declining health. All the days of carefully keeping Bailynn in her bed and flat would quickly come to end with funeral visits and family gatherings. This would be a true test to wether or not a trip to Indy could even be achieved. We spent Tuesday and Wednesday of this week at the funeral home and we buried my grandfather yesterday. Bailynn did famously. I believe she was the happiest person a funeral home has ever encountered. The sheer volume of her excitement and her squeal when she saw her fancy clothes and nice shoes was enough to bring joy to the furthest corners. She was ecstatic to be out in the world! Her singing and raspberry blowing were proof of that. Her back even held up fairly well. The area where the skin originally broke still looks like a large blood blister and it still grows and shrinks with irritation and rest. Bob and I have tossed around seating and cushioning ideas like a volleyball match. We have stuffed every surface she touches with memory foam and pillows in attempt to maintain the healing we have achieved. We have held our breath placing her in the Rocket (her seat in the car) and her wheelchair. Is it enough?! The hardest thing with a special needs child is seating. When your child can not sit like a typical person, you concoct the most bizarre ways in which to achieve a semblance of normalcy. If we could just design and make the seating she needs, to her exact specifications – if. Another special needs mother I know is going through a very similar conundrum. Her daughter however doesn’t have rods in her back yet and suffers from severe scoliosis like Bai did. A seating nightmare. She has lots of needs and little options. Having someone to rant to about this soothes my heart. I’m not alone. We are not alone.
Since Bailynn has done well, and since we moved appointments a few weeks back that we were suppose to go to in Indy, tomorrow the girls and I will head that way for dental visits and a quick check up for Bailynn. I already feel myself on edge. We are busy packing stuff for the car ride tomorrow and I am anxiously awaiting our arrival home with no issues and no damage. We shall see. We will pray – pray too please!
If she can make it through this trip, maybe we can get back to life as normal. Maybe we can go out and do things. Maybe we can take her swimming or the movies. Maybe.
I’m still busy building my etsy shop, 5 Pink Peonies, and trying to get the word out. I’m also very excited to announce that my business partner, JoElle, and I have set up a showroom in New Harmony, IN. We are sharing a space, “The Main Event” with a group of lovely women that do events and weddings as well. I have been busy building a simple easy to navigate website for “The Main Event” and a Facebook. We are so excited to be out in New Harmony. Check us out and look for some of our upcoming events. We plan to have an open house soon. I will let everyone know how the trip goes tomorrow and how Bailynn’s back does.