My dream for this business is for it to become like a big group of girlfriends! I want to get to know my customers, and I would love to become a little community that supports each other. To do that, I feel like I should start by sharing a little about myself, and hopefully you will follow my lead. I want shopping here to be fun, I want you to love your purchases, and I want you to always feel beautiful...but I also want to try to do some good in the world while we are at it!
I am excited about picking a worthy cause each month to give 10% of that months sales too. The first few will be causes that have a special place in my heart, but I also want to learn what my customers struggle with, or what they are passionate about, so that I can do my small part to contribute to what you love.
I will give you a little insight into my life here so that you can learn more about me and what makes me tick. I am very passionate about my causes because they have all shaped my world. I am going to try to be as brief as I can with each subject, because believe me...I could fill a book with each! I hope it doesn't look as if I minimized their importance (especially Athena, who I will introduce you to first), I am just trying to give an overview or this blog will go on forever. Please ask any questions (in the comments below or email me at MoodOnlineBoutique@gmail.com) if you want more information on anything that I mention. I feel like an expert on most of the subjects! (I am not, but when you live through these things, you gain a plethora of knowledge and I would be happy to share it with anyone who needs it!) I know this blog post is long... I have bolded the topics that I discuss so that you can skip ahead to those that interest you if you want :)
I would sincerely love you to add your story and the causes you support in the comments. Help open our eyes and inform us about the change you want to see in the world and why you are passionate about it! If we all help each other we can make a difference.
OK, here goes mine...
1- My number one passion. Finding a cure for Metachromatic Leukodystrophy. I have 2 daughters. Raven is my oldest, she is a 20 year old college student. My younger daughter, Athena, passed away when she was 8 years old. This was 8 years ago. I can't believe she has now been gone as long as she was here.
Athena had a rough birth. I had to have an emergency C-section. She was a preemie and was neutropenic, but she recovered and was a healthy toddler... until she turned 2 years old. Up until that point, we had noticed that she was slightly delayed in her motor skills, but doctors told us that it was just because she was a preemie and that she would catch up. The day of her second birthday party was a great day. We celebrated with family and friends. When the party was over I gave the girls their tubbies, put them in their jammies, and gave them each some milk before bed. I handed Athena her sippy cup, and she couldn't get it in her mouth. I thought she was being silly, but I quickly realized she really couldn't do it. I picked her up out of her booster seat and sat her on the ground to check out what was wrong. When I put her down, she fell over like a rag doll. I panicked and called the doctor. She told us to come right in...and so began the nightmare. Without going into all of the details, which would take all night to write, we went through an entire year of testing before being punched in the gut with a diagnosis. My perfect, beautiful baby girl had Metachromatic Leukodystrophy (MLD). A rare, genetic, terminal disease that we had never heard of before. She only had weeks, to maybe a few years, to live. The following is what we were told would happen, depending on how long she lived:
She would lose all muscle control, and then the muscles would become rigid leaving her bed ridden. She would lose the ability to speak or even smile. She would have seizures multiple times a day. She would have severe, horrific nerve pain. Her bones would become brittle and break easily. She would have progressive loss of vision leading to blindness. She would have convulsions. Impaired swallowing would lead to being fed and medicated by a g-tube in her stomach. She would virtually be a prisoner in her own body. Her lungs and heart are muscle, so with the loss of muscle control...the lungs and heart would start shutting down also, leading to her ultimate death. Most children with this form of MLD die by age 5, often much sooner.
How does one respond to a diagnosis like that? I don't even know how we put one foot in front of the other. But we did, and we were surrounded by the love and support of family and friends - even strangers - every step of the way. Athena was a shining light in our lives. We were so blessed to be her parents. She touched every person she ever met in a profound way...it is hard to describe her magic. She changed me and everyone who met her for the better. I am convinced she was a real life angel sent to us. And now she is forever our guardian angel.
Next month I will be giving 10% of our sales to "Smiles for Brookie". Brookie is the sweetest little girl who has cerebral palsy. She reminds me so much of Athena and has stolen my heart. Helping families with medically fragile children, or children with physical challenges is for sure a passion of mine, I want to pay forward all of the kindness that was shown to our family in our time of need.
2- Nothing quite compares to number 1, but there are a few other things that have shaped my life also. Ulcerative colitis is one of those. I have been sick with UC since I was 19 years old, I am 47 now. UC is an "invisible disease", so it is hard for people to understand just how debilitating it has been in my life because I "look healthy". My life has gone as follows from age 19 until 8 years ago when I had major surgery to "cure" my colitis (more about that in a minute):
I would feel "fine" for a few months at a time (meaning I would only have to throw up once or twice a day), then I would have a flare up and start throwing up at least 20 times a day, I would be admitted to the hospital after getting so weak and dehydrated that I couldn't stand; be prescribed large doses of prednisone (a miracle drug with evil side effects); gain a massive amount of weight, a "moon face", mood swings, muscle aches, and a slew of other side effects of the prednisone; feel better; repeat. For the first couple years this is how my life went. Throwing up isn't usually a symptom of colitis, so it took doctors awhile to diagnose me. But I eventually started throwing up blood and having the normal "poopy" symptoms along with it, so they figured me out. These symptoms mess with my life in many ways, 1) Holding a job. I found it impossible to hold a job outside of my home. I don't know how people with UC do it! I was always calling in sick or leaving early (sorry Jodi Escolas!) I also would be hospitalized regularly for about a week at a time. Even when I was having a semi "good" day, I wanted to be near my bathroom at all times. After I had children, I was lucky enough to be a stay at home mom so that I didn't have to worry about that, but Raven is 20 now. I needed a job, which is why I took the leap of faith to open Mood Boutique. I also decided to get the degree that I have always regretted not getting. Thank God for on-line school. I am well on my way to getting my bachelors degree in Graphic Design. 2) Low self esteem and body image. I had always been an active, healthy kid growing up. Dealing with huge weight gains and losses over and over again really messed with my self esteem. I was especially angry because I would try so hard to exercise, eat right and "outsmart" the prednisone, but the prednisone always won. It was so defeating. 3) Relationships
It takes a special person to stick by me. My friends have to deal with me cancelling plans last minute all of the time, I have lost many over the years. My husband has to live with this hot mess. My family is always picking up the pieces of my life when I am too sick to handle it (this was especially note worthy when we were caring for Athena, trying to give Raven a happy, normal life, and dealing with me and my flare ups). I am lucky that I have a core group that still loves me.
Like I said earlier, I had surgery after Athena passed away. I had a colectomy and ileostomy, and then a reversal. (I knew it would be a 6 month to a year recovery process, so I refused to take that time when Athena needed me). I thought it would be the answer to my health prayers, I was told it would cure me. It did not. I had my large intestine removed, my colon rebuilt, and had to have a temporary colostomy bag, but after all that I am still sick every day. I have come to terms that I will always be sick, and I have created a life that allows me to be at home to deal with it. The difference now is that instead of having severe flare ups that landed me in the hospital and on prednisone every few months, I am now sick every single day. The only good thing is that I don't get sick to the point that I have to be hospitalized anymore so I am able to maintain my weight when I stick to a healthy exercise plan. I will add a picture of myself at a warrior dash race that I did two years in a row. The first one is of me while taking prednisone. The second is one year later, in the same spot on the course, but I wasn't on prednisone anymore. The difference is insane.
3- After Athena passed away, it felt like our life fell silent. We had a hospital room in our house where she was cared for around the clock by myself, my husband, and a team of the most amazing nurses. After she passed away, there were no more nurses, no more commotion, no more beeping machines. Just silence. It was deafening. One of the first things we decided to do to help this situation was to get Raven the puppy she had always wanted. We hoped he would bring some much needed happiness and noise into our lives. He did. Nike is a Siberian Husky. I had always wanted one. I bought him from a store that I now realize must have used puppy mills, which makes me sick to my stomach. I had never though much about adopting a pet, it just didn't seem like a big deal. I now know how many animals are saved through adoption. When you know better, you do better...right? Even though I love Nike with all of my heart, I will never buy a pet again now that I know how many sweet souls are euthanized daily through no fault of their own. The human race has let them down. It breaks my heart. We decided Nike needed a friend and adopted a sweet little spitfire named Pippa. We think she is a Border Collie mix. She is a nut and I couldn't love her more. Then, Raven became very interested in horses. I had horses growing up, so this thrilled me! We ended up getting her a horse for Christmas. I also started volunteering at a horse rescue, which changed my life. The horses there needed me, and I loved being needed and
becoming reacquainted with a passion that I had as a child. Animals are such a huge part of my healing process...I don't know what I would do without them. They are my therapy and I will always be looking to help out the rescues that spend their lives, and their money, saving these sweet souls.
So, those are the three main things that have shaped my life thus far. If you made it through the whole thing...thank you for listening! I know it was a lot!
If you see some of your own struggles in my story, I hope it helps to know you are not alone. Please feel free to comment & ask any questions, I am an open book!
And like I said, I would love to know more about your stories and what has shaped your lives. Please share...it helps, I swear.