Coming up with a title for this post has kept me from writing this for a very long time now, so I’m just sticking with it. Now, Logan is far from a princess. She is more of a tom boy in lilac glasses and pigtails, who prefers to wrestle around with her brothers than play with dolls. She is one tough chick, and now she has a bed to match her personality.
Logan has been in her crib up until a couple of weeks ago. Thankfully she is a tiny petunia, so she still fit in it. However, she has gotten taller, making it quite easy for her to fall out either on purpose or accidentally. There were several occasions where I went into her room to get her up, and there she was happily playing on the floor. No thumps or cries were ever let out. I so wish we had a monitor that recorded her every move. I would have loved to see how she quietly got out without getting even a simple scratch. Needless to say, nap and bedtimes were very stressful for us. I was so worried she would fall out, and I felt like I was glued to the monitor.
David and I rigged up a barrier, using her ballet bar that we used for physical therapy a couple of years ago. We wrapped it in pool noodles (we still are overstocked with these after Jack’s last Star Wars party) and I tried to make it prettier by wrapping those in sheets. No matter what I did, it was still quite the eye sore. And, it was SO hard getting her in and out of it. I have bruises on my ribs from it. But, it totally worked. She never escaped again. I don’t have a picture to post of it because I despised it, but now I wish I did. I cannot tell you how great it felt to tear that barrier down!
Many of you probably have not thought twice on the type of bed you would get your child once they were ready to escape the crib. I remember being so excited to go bed shopping for Jack. I had pinned all of these fantastic rooms and tried to recreate what I had in my mind. It was so much fun for me, and him. My bubble got deflated this time around with Logan. She would not be safe in a typical bed, even one with toddler rails. She is a mover and shaker in her bed, and she does some of her best therapy work in there. Like most kids, she learned to pull up and cruise in there, and she eventually played around with her depth perception and motor planning in there. A simple bed would just not do, and she would be all over her room if we just had something on the floor. She would never sleep!
So, I began the search for what other kids were using. Some were really cute, and others simply looked depressing. I googled “special needs beds”, and the same bed kept popping up. This popular bed cost…$8,000!!! Now, insurance will likely cover the majority of this bed. IF it is used for medical purposes, not safety purposes like Logan would need. Knowing the daily struggles we face with our insurance company (which does happen to be fantastic for us), we knew this wasn’t an option. Plus, it wasn’t what I had in my mind for her. So, a new search began.
We have an incredible support group on Facebook, and these families are my go to for anything PTHS related. I asked around and quickly found someone in NC who had a custom bed made locally. This family had found Rick’s Custom Canvas & Sail Repair, who made the safety mesh that was needed. They were happy to help, and were eager to get started! Now we just needed someone to build the bed. We sketched out what we wanted and started asking around. A good family friend gave us the name, and before we knew it the design consultation had begun. We met with Seth Burch, who owns Hollow Rock Construction in Durham. He is a local Durhamite, and grew up close to David’s family. He was the youngest of 5, and has made a living doing something that his father had enjoyed as a hobby. Seth didn’t end up building the bed (probably because he is in high demand!)…his father did!
Warner Burch is a retired endocrinologist, and an incredible craftsman. He was quick to get started and was so patient with us throughout the design process. Do you know how many types of wood there are out there?! He designed this removable canopy at the top, so the 4 top rails slide into the panels of mesh. This actually adds more support to the entire frame. We would have never thought of that!
Warner and his wife, Vivian (I desperately wanted to name Logan this!) delivered the bed in no time. They are such a fantastic couple! I hope David and I are like them when we grow up :).
Once the measurements were sent off to Rick we started painting Logan’s old room. Wes had the largest bedroom, and so naturally the youngest would get moved to the smallest room. Sorry, wild man. Logan’s room was lilac, so the least we could do was give him a more manly color. I have to say, my excitement in room decor started to come back not only for Wes, but for Logan’s BED! I started to see the possibilities, and the bubble was back!
The mesh finally arrived and before we knew it the bed was up! Luckily we have a Duke baseball coach as a friend and neighbor, so he lent his manpower to get this beast upstairs. Thanks, Josh! It took David and Warner about 3 hours to install the mesh panels! I sent Jack up with my phone to document the procedure. He came back with two shots and about a million selfies. 
As the men were working I got to hang out with Vivian and hear some fantastic stories. She has a special needs brother, so it was comforting to hear her perspective on life with a SN sibling. I often worry about how Jack and Wes will be affected by this life of ours, and after talking with Vivian my mind was put at ease. There is just something extraordinary about these siblings.
So, here is the finished product! We all LOVE this bed. Jack has declared it the coziest bed in the house, and he wants one for himself. Logan is literally giddy in it til this very day. She sleeps so well in it, and I sometimes think she can’t wait to go to bed just to be in it :). And surprisingly, the mesh is very see through! When you are in the bed at night with the faint nightlight on, you really cannot see it! It seriously looks like there is nothing there! Amazing.
Logan is one happy girl, and wakes up with this sweet smile just about every morning 🙂
Here’s a little video we took. Logan is SO happy, and Wes is off to Home Depot!
Thank you for your story about your daughter and the making if this wonderful bed! Yes I totally agree about how Insurance can be so maddening at times and how expensive adaptive equipment can be. Who would have thought a sailmaker and a retired endocrinologist would get together to complete this project. Your story shows the power of love, ingenuity, creativity, problem solving and a parents love and determination to care for a child. It’s amazing who will step up when asked nicely. I need to learn that lesson in my life as a man with some chronic health and chronic pain issues. That asking for help is not shameful, and does not show weakness. Too often I will not ask for help or fear being denied assistance and ” rejected ” ,taking it personally.
That being said, that bed looks so cozy, safe, and fun! I think it would be helpful for many who are concerned with rolling out of bed. Many good nights sleep to. you, Logan and your family! God bless.
Thank you for your kind words, Ronald! Yes, asking for help is very tough, but there are so many people (us included!) who love to offer their time and skills. We are praying for you!