Butterfly (5 months post op)

So I believe I’ve only ever blogged about Briley’s leg disorder once before.. and that was when she was diagnosed (in 2010).

I will spare you the full version as I promise it would take entirely too much time to read, but to say that the last 18 months of our lives have been a little strenuous would probably be an understatement. I actually sat and typed it all up.. but decided against it because it’s just still very raw and felt more like I was venting about the hardships rather than celebrating. We’ve faced a lot of uncertainty with Briley’s disorder throughout her life.. but other than trying to get a diagnosis, this has truly been the hardest test so far. Just to catch you up– when Briley was 10 months old she was diagnosed with a rare malformation of the leg which they called Veno-Lymphatic malformation. This meant the veins in her leg didn’t fully develop in utero and the fluid often caused “knots” or “tumors” that caused quite a bit of pain and swelling. These would also appear from any sort of “injury.” Sometimes holding her leg too tightly when changing her diaper or clothes would cause one. If the carseat rubbed her thigh she would get one. Then of course she would just get them out of no where for no apparent reason. Once they appear they are very painful and they take weeks if not months to disappear. From the time she was 4 months old we noticed something was wrong, unfortunately it took 6 months, 2 different hospitals and countless doctors and tests to diagnose her. It was a long, scary road trying to get a diagnosis– numerous things were mentioned while trying to narrow it down, including a very rare cancer of the muscle. Little did I know that it would be an even longer road getting help to learn how to treat and manage her pain after she was finally diagnosed.

Fast forward to 7 months ago when we were out of options after her condition had progressively gotten worse. We then began getting referrals to other specialists. After over 6 weeks of basically being a harassing parent who wouldn’t take “we’ll let you know” for an answer, we got an appointment with a surgeon who we were told was our only hope (and only 1 of 2 surgeons in the U.S. that could perform the surgery Briley needed.) But he was convinced that she would not need this surgery (and I’m sure, also thought that I was just overreacting) but not only that– he was also unsure if he would even take her as a patient seeing as how it would be difficult to CUT a child’s leg who until this point couldn’t even endure a pinch or bump without producing extremely painful “tumors” and causing complications with her circulation. But after more prayers than I can count, he let us know almost immediately after seeing her that not only would she need the surgery.. but she would be needing it on both legs due to fact that it had gotten so bad, so fast. The last year and a half of our lives has basically been “to be determined.” We didn’t know what the future held for her. She was determined, even after sitting through the visit and the surgeon letting her know that she would lose strength and that normal activities would be “different” and possibly difficult for her for awhile, she looked up at me and told me she was not missing her dance season.

Watching the fear in her face and not being able to make everything fall into place right then for her was harder than I can explain. She continued to worsen and the few days before surgery were extremely rough on her- her pain had greatly increased. Things only got progressively worse as Briley does not do well with sedation. When I said “does not do well,” trust me when I say that this is an understatement. It does not only effect her physically, but mentally and emotionally. I will put some of the blame of the last few months on the surgery itself as well, but she experienced a LOT of self doubt and defeat. My self confident, outgoing, happy child.. had disappeared. She was not herself and just like the last time she went under sedation, she experienced this for weeks. Recovery from surgery and forcing her on her feet less than 24 hours after having her tendons cut on the backs of both legs….. I’ll spare you the details of that. I had a 6 year old who went from being in a lot of pain.. to a 6 year old who was in excruciating pain every time she moved. But like a trooper… after only a couple of days, she jumped right back into a routine as best she could and put on a smile.

Briley’s surgery was 5 months ago, today. Over the last 9 years, I’ve shared things happening in our life often on the blog.. but Briley’s issues with her leg were one thing I didn’t share much and honestly it was because it was hard to talk about something that always felt like a bomb that could detinate at any given second. Over the last 5 months I couldn’t tell you how many times I’ve answered questions about her surgery, her legs and everything that has gone on. I also couldn’t tell you how many times I’ve said, “She is doing great! She is so much better now.” But deep down, I knew she was still struggling. She was not herself again. With the combination of the anesthetic, the surgery, her routine being off and her just self-doubting herself.. it was hard to watch my girl and see a different kid. I can only type that now because I feel like we have finally, truly gotten over the worst of it. Her little spirit was diminished and she was not the little girl that I knew anymore. Her confidence was shot. She hid it well and she wouldn’t talk about it. I felt like I was hitting a wall when I tried to get anything out of her. But I saw it in every aspect of her life; everything she loved and enjoyed, the way she talked and carried herself, the way she acted in a group of people. I struggled with being impatient and wanting everything to fall into place and not being able to do that for your child, who you watch on a daily basis in pain, is harder than I can explain. I prayed every day, multiple times a day, that “this” would be over and while I would like to hope that we are finally over the big hurdles, I am sure that we will face more trials with this in the future. I know that there can always be complications or new issues arise. But the fact that when I look back at what all she has overcome so far, I am amazed. She is so incredibly strong and brave and I don’t think she really sees it.

She will always face issues with her disorder. She has trouble with balance, standing for long periods of time, running, etc. She’ll have to use her leg pump for the rest of her life, she’ll never get to play certain sports or be involved in certain activities due to the sheer risk of injury to her leg. We will always have to keep an eye on her leg and the circulation so that she won’t possibly lose it one day from complications. There are things she knows and things she wouldn’t quite understand yet. But one thing this girl loves and cannot be taken away from her, is dance. When we went in for the first consult with the surgeon we were answering questions about how well she functions, how she walks, how she manages without assistance and when they were surprised she was walking as well as she was, Briley was quick to jump in and let them know that she was a dancer. She lost some strength and she still struggles with her balance and her flexibility from her tight muscles, but on a daily basis she is hollering “Look mama!” from across the room to show me she got her leg mount a little higher.. and the same little girl who told me in that surgeons office months ago that she was not going to miss her dance season and was determined to get through surgery and back to dancing.. did just that. So when that same little girl who dreams of dancing on pointe like the “big girls” one day, tells me that one day she will, I don’t doubt her.

This video is something I have wanted to do for awhile for her but we’ve been so busy that this was truly a last minute, 30 minute window project. We went in the studio and I let her have fun with it. I turned on some music and told her to do some stretches.. and she ran with it. This is all her.

For all of those who have been on this journey with us, thank you. For those who have gone out of their way to make her feel special and show her how strong she’s been, thank you. I don’t think we can every fully let you know how thankful we truly are.

..and if you’ve made it this far and you’ve actually read my extremely long ramblings… you deserve an award.. and thank you. ;) and please don’t judge the video quality ;) this was just a personal project– just something for Bear to help HER see what I see.

Butterfly from Tara Swain on Vimeo.

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Tara Swain is an internationally featured and published, award winning Wedding and Portrait Photographer based in Paris, Texas and specializing in child photography and elaboratle and whimcially styled sessions. She wokrs on location as well as offering a large, natural light studio right outside of Paris.

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