This is a sweet video of Lil' & Trev in 2005

Mom and Child Dancing Tradition

I have always loved to dance with the children. Honestly, there is really only one artist that we dance to, Cat Stevens. The children love his music, as do I. This is a tradition that I started when Lilly was about a year old. I have video of Lilly on tape but not digital so I can't post it. But I do have video of Trev and I dancing in the kitchen.

Locks of Love

I remember years ago donating my hair to Locks of Love, never realizing that one day it would become personal. I remember years ago when Lilly was 4, she got her first haircut and I remember telling her "One day Lilly, you will be able to donate your beautiful hair to a little boy or girl that doesn't have any hair." She cried. She didn't understand the concept and the thought of cutting off a lot of hair extremely bothered her. I never thought we would be in this situation.

We Found Out Why It Is Called The Funny Bone, The Hard Way-

On Monday, 3/23 during our visit to see Neal's parents we decided to go to the park. We were having a lovely time until Neal and I heard crying. Neal said something like "Oh, no!!!" and here comes Grandma Rosie trying to hold Lilly up (because we all know, poor Lilly tends to fall or come close to passing out when she is in pain or scared). So here is how the story went... This is a compilation of Lilly's and Grandma Rosie's stories. Lilly fell off the monkey bars onto her elbow. Lilly heard a crack. She landed on top of her arm. That really was about all I heard over the crying.  All I could think about was Lilly crying so loudly. And unfourtunatley, in the past Lilly has passed out and has been very dramatic over simple things like pulling out splinters. So it was hard for us to decide if she was really hurt or if she was just being her normal self. However, I do remember thinking, something is wrong, whether or not her arm is broken, something is very wrong. I took Lilly to the car, my sweet little angel, and held her and talked with her about the pain she was in. I knew that I wasn't going to be able to access the damage to her arm until she was calm and quite. I decided to take her for a ride in the car. She didn't stop crying. She had been crying non-stop for several minutes. I needed to call Neal and tell him that I was leaving the park for a bit, so I told Lady Lillian that she needed to quiet down just for a bit while I talked to Daddy. She did but it was very hard for her to stay totally quiet. I decided to take Miss to get a doughnut. After this trip she was finally calm. Thank God. However, that was not the end of her crying. She began to cry again when the fellows (Neal & Gramps) tried taking a look at her arm again at home. Grampy got her some ice and towels and that calmed her down again.
We drove home to Leland. We got home around 7 p.m. Neal & I went on the computer to see what the symptoms of a fracture were. She had all of the symptoms, except for swelling. Neal and I agreed that in the morning I needed to take her to the doctor because she did show all of the signs of a sprain or strain. I noticed that morning that her elbow was noticably swollen. I had planned on going to the gym and then take Missy to the doctor. I called my Best Friend and told her the situation. She told me a story about herself when she was a child that made me decide to take Lilly to the doctor immediately. I knew that if I would have gone to the gym that I would have not been able to stop thinking about Lilly's arm, so it was an easy decision.
We went to the pediatrician at 11:20 and stayed until 1:00. Then we had to run up the road to the radiologist and stayed until 2:20. We hurried to get lunch at 2:30 and got to the orthopedic's office by 2:45. Lilly got a beautiful neon pink cast that we have to look at for 6 weeks. We were out of there around 4:15. We stopped by Nana's for a while and when I was telling the story to Aunt Heather, that is when I discovered that the bone above the elbow is called the HUMERUS. Not so funny when it's broken, huh?

Our Visit to Charlotte 3/21

Over the weekend our family planned a trip to Charlotte. Neal's parents live there and I had also made plans for Lilly to meet another little girl with Alopecia.
We got to Charlotte around 2:30 p.m. on Saturday. We all played in Grandma Rosy's & Grampy's yard. The grownups had a lot of fun, as well as the children.
We left around 5 o'clock to meet Lilly's new friend and her family. Her mother and I decided chicfila would be a good place to eat, play, & talk. We pulled in Chicfila behind our new friends and the mother (I will call her K) greeted me with a smile and a hug (she's my kind of girl). It felt as if I had known her for a long time. Of course, the girls were very shy but as soon as it was play time the shyness left the building and they were hugging at the end of the night. While the children played, K, her husband (I will call him A), Neal, & I talked for more than 2 hours. Of course, the topic was Alopecia & how it related to us and our children. When I spoke with K, it was like we felt the exact same emotions about our daughters's disease. I
FINALLY found someone who knew exactly what I was going through. And Lil' finally found someone that is like her. That has been the hard thing with this disease, everyone is sympathetic, not empathetic & I needed someone to know exactly what was going on in our home. And Lilly Bell needs someone who is just like her. Whether or not they talked about their hairloss, I do not know. But I do know that they have the comfort of knowing someone like themselves. And that is priceless.
It was nice to speak to K about the "roller coaster" ride of Alopecia, the hassle of the medications, the insomnia, bullying, hours & hours of research, numerous doctors visits with one answer-"It's unpredictable", resources, wigs, therapy, etc. At one point K said something very serious & Neal began to laugh. Of course, it was embarrassing (as always, because this is a very bad habit for Neal). K just smiled & I said to Neal "What are you laughing about?" It took him a couple of seconds to answer but his answer went something like this, "I just think about K sitting up at 11 o'clock at night on the computer in bed (& he gestures the typing motion) & A trying to sleep. It is just like what Danielle does while I am trying to sleep." And that is the point when the guys realized they had a lot in common, too. They both jokingly agreed that they needed to make an Alopecia World for husbands, of wives of children with Alopecia. It was funny.
We ended our meeting with hugs & plans to meet again. I also, invited their family to come see us and we would go to the beach during the summer. We are really looking forward to seeing them again.

Thinking about Lilly & Yoga practice

I wanted to write about Lilly. She is on my mind all of the time. I actually have a hard time sleeping at night because I think about her and her hair loss. Tonight is one of those miserable nights. I am at the point with this Alopecia disease, where I want it to be something else. I want her hair loss to be a symptom of something else, hopefully something else that can be easily fixed or cured. I have been thinking about all of her ailments throughout her short little life, trying to piece something together. Searching the web for answers. I am so frustrated.
The list of things, oddities if you will, of Lilly's physical health are as follows:
When she was about 9 months she got a knot under her chin-swollen lymph node & to this day it is still swollen.
She lost the top layer of all of her finger and toe nails last year. On top of that her toe nails are shaped differently. Most of them all curve downward.
Of course, her hair loss started when she was 4.
More recently she has complained of being hot. She gets hot in the house and hot out of the house. She gets so hot and red when she is outside playing in 70 degree weather and she has only been outside for less than 30 minutes. It doesn't seem right. Maybe she is just naturally hot.
Maybe all of these things are normal and I just need to accept my daughter is going bald. I am going to make, yet another appointment for Lilly to see the doc.
Well to lighten things up a bit.... Lilly has been taking yoga classes with me. She really loves yoga. We go to the class for 1 hour on Monday and Friday. Today she got a bit fidgety after taking Urdhva Dhanurasanan or the full wheel. Which I need to add, she is awesome at this pose. Her stamina in this pose is so unreal!!! She just looks so natural in the pose. So after that she was ready to go to the "kids room".
I hope that by introducing my children to yoga and the philosophy of yoga they will gain and maintain excellent health in their minds, body, and spirit. Namaste.

Introducing The Galloway's First Post

This is a blog dedicated to our growing little family. We have set it up so our family and very close friends can see our rollercoaster ride of a life. Our ups and downs and all of our little secrets are here on this blog. SSSHHHH we hope you can keep secrets. Enjoy reading everything that goes on in the Galloway home. Much love to everyone.