Why hello there! :) I know, I know I’m that horrible blog owner that hasn’t updated in months. I kept putting off an entry on here, promising I would do it next week, well next week turned in months of not writing on here. Sorry!! I promise I’m alive and haven’t forgotten about you guys! I can’t even believe it’s been 3 solid months since I have written on here. The last post was definitely a hard one to write but the response has been so overwhelming and so very appreciated from not only families with someone that has Kabuki Syndrome but others that don’t and just read my blog for insight. Thank you to all those who reached out to me afterwards and allowed themselves to be just vulnerable as I was. Your courage, words, insight and most importantly your love all were sweet reminders that this is right where I need to be.:)
The question I have been asked over the month or so is when was I going do an update on my life on here. I really didn’t know if that was something worth reading for you all but the same questions get arising so I thought this would be a perfect opportunity to finally post on here. Questions that have been the most popular have been How’s life right now for me, How’s my Dog Aslyn, What does the future look like for Kabuki Unfiltered, How’s the weight loss journey and where I’m at now on that, Has taking off weight helped any with my knees, Do I still struggle with Anxiety and what I use currently to help through it, Am I doing more speaking engagements?
Life right now is pretty great. Staying busy with my job as the receptionist still for the church my Dad pastors at. Enjoying the warm weather and really for the first time in my life enjoying being able to be active and confident outside. My sweet puppy Aslyn continues to bring so much joy and help with my anxiety. Aslyn turned 1 at the end of May. She is full of energy and curiosity that makes you smile, well most of the time. ;) Samson my kitty is still annoyed with Aslyn’s presence as the day we brought her home and Aslyn doesn’t quite get that memo, lol. Maybe someday… ;) But not to worry Samson still gets all the love and attention that a kitty could possibly want. :)
My weight loss journey has continued on since I last wrote. I have lost a total of 83 pounds and now have hit the point where I’m learning the balance of maintaining my weight loss. I stopped doing Jenny Craig at 45 pounds and did the 35 pounds on my own of just watching my calorie intake and what I actually eat and keeping moving. Still trying to get used to and comfortable with my new body but slowly accepting the hard work that I have worked so hard to get. I am continually and honestly don’t think I will ever stop learning that true beauty comes from within and not from what I see when I look in the mirror. Accepting that food and my weight will probably be something I deal with all my life but it can be something positive just like it is right now. The most popular question I get asked when people approach me is “You must feel so much better and You must not struggle with your knees anymore” and that’s a tough on to answer back. Do I feel better absolutely I do, Do my knees feel better yes to extent, Are they still causing me trouble sadly yes. I still have to be careful when I do go out and do active things that I don’t overdo it, that just because my body is saying I can go doesn’t mean my knees are saying go. There is no cartilage left on my left and hardly any on my right, they are just worn out and I don’t blame them, I have been through a lot with them. Not gonna lie and say it’s not frustrating though because it is, here I am wanting to actually do these things that in the past before my weight held me back hugely but now that it’s gone I’m ready to do these things I have missed out on there is still something holding me back. But though it may be frustrating and confusing I am still able to look at the situation and be extremely proud at where I’m at, I mean that’s 83 pounds lifted off of me that I am no longer weighted down with and if that’s not something to celebrate I don’t know what is.:)
If there is one thing I am proud of for Kabuki Unfiltered is that I have kept my life pretty open for the most part. I have done it that way so that those who have questions would feel comfortable approaching with questions. Some questions I have mentioned on here, some more private but still was answered through email or phone. It has brought me so much joy more than you all could ever think or dream of to know and finally experience that I’m needed or wanted. That being said the question that has been raised a lot is “How is your anxiety today/Do you still struggle with your anxiety like you used to?”.The answer to that question is yes, it’s still something that is there every day and I have accepted that it’s just gonna be a part of my life. Are there days that I wish I could have a break from it or wonder why some people only struggle with anxiety for a season or from time to time and not every day, yes but you know there is so much worse things that could happen that I would have to deal with every day. . So things that have really helped me recently other than my medication when my anxiety is bad is prayer, reading, getting out and walking, I know this sounds dumb but little puzzle games on my phone actually helps calm me down lol, to even just putting in my earbuds and listening to music that speaks to my heart and that offer the words in the lyrics that I’m having a hard time finding to express. So days all I have to lean on is Jesus and the promise that He hasn’t given me more than I can handle and you know that’s enough for me so days. So I’m grateful each day for the opportunity I have to live another day and embrace it as best as I can with open arms and move forward.
As far as events where I am speaking, I just had the opportunity to talk with families that attended the West Coast Kabuki Syndrome Conference in Torrance, California. It was such a beautiful event put together by Rick and Jodie Esponda. What made this conference so special to myself was that both my parents along with my best friend Amanda where able to attend this year with me. This was my Dad and Amanda’s very first encounter meeting someone besides myself with Kabuki Syndrome. It was such an eye opener for them and we all walked away talking about how special it was. It was such an honor to be able share my heart and my journey with families that are on similar paths as I am. Every time I attend an event where I am able to share or post a blog entry it makes me even more passionate about spreading the word about Kabuki Syndrome. If there is just one person in the audience that didn’t know something it’s one less person to add to the list of those who didn’t know. That’s what keeps is me speaking, writing, advocating, etc… So as long as there are people asking, discovering and talking than Kabuki Unfiltered will be here until the day comes where people stop asking “What is Kabuki Syndrome”. Another question is people asked when I am speaking next, there are some opportunities that are still being worked out but I will keep you all in the loop. People have also asked where I would speak, I always say I am open to share my story anywhere Conferences, Retreats, Schools, Churches, really anywhere. If you have desire to set up something feel free to message me and we can see if we can brainstorm together.:)
As I’m preparing to wrap things up with this entry I can’t help but think about the two year anniversary that just past of getting that phone call with the official news that I indeed had Kabuki Syndrome. Some of you are follow me on social media and saw the post I posted on the anniversary date. I had no idea what kind of journey I would be entering in that day, nor did I ever dream I would be public about it. Kabuki Unfiltered was not even a thought in my mind that afternoon but would eventuallybe born 5 short months later. The little blog that wasn’t supposed to have more than 100 views now is past 17,000 and now heading to 18,000 views before its 2 years anniversary start date. Just blows my mind that a broken, lost, lonely girl that was really considering her existence on this earth before that phone call receiving the news that should have wiped her out completely. I mean a disease that right now has no cure and that would lead her to finding hope, happiness and acceptance that she had never experienced and was desperately longing for. That right there is a miracle of God Himself folks. God truly uses our weaknesses to show Himself. If anything because I walked through those very dark moments I have more of a heart for those that are lonely, hurting and are label outcast because I have been in their shoes and I have found what they are searching for, a place of belonging, we all want to belong. I am so happy to tell you that girl found her place and its right where she belongs.
Until Next Time-- Be Blessed!
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