It's been a minute since I've posted on our amazing warrior boy, Walker James! He's had a great week back at school with his friends and enjoying all the soggy mushy foods he can! But he's been in HEAVEN....it's FOOD....not LIQUIDS so it tastes damn good! Like mentioned previously, he's one picky eater, so his menu is limited. He's enjoyed an abundant amount of extra cooked mac and cheese, jello, applesauce, yogurt, soggy cereal (YUM I know), pancakes, mushy tater tots, oatmeal.... just to name a few. Tomorrow he can start to add in his regular diet and he is THRILLED! We have a local pizza joint that has super thin crust pizza that we are ordering for dinner, but not allowing him to eat the crust! He couldn't be more excited for FRIDAY and PIZZA with the family. Actually, if I do say so myself, I'm pretty thrilled as well!
Next Monday we have an appointment in Chicago so we've decided to head to the city Saturday and enjoy a mini vacation just the 5 of us! A MUCH needed family trip after being separated during the month of October while we were in Minnesota at Mayo Clinic. We scored both nights FREE using our Marriott rewards points, so that's ALWAYS a bonus! I'll keep you all updated on what adventures we find ourselves in. If you've been following us long enough, you know our travels NEVER seem to disappoint! Something out of the ordinary is BOUND to happen.........no joke.
So I've had a small group of individuals reach out asking why we are such an open book and want to OPEN our lives and Walker's privacy during this time. Shouldn't we keep this to ourselves? Possibly, Maybe....Probably....but NO. We've chosen to share our JOURNEY. We've chosen to let others see our experiences in hopes of helping those who are battling the same disease, and help create awareness for such a rare diagnosis. I've spoken to Walker about this blog and photos taken of him during vulnerable moments, but he's okay with sharing his journey and we are doing this together. Let me tell you, being WIDE OPEN isn't for everyone. I get it. Many are personal and that is OKAY! I'm sure my husband at times wish I was a little more closed but I've always been open and honest with my life. I've built my business ONLINE using social media for the past 10 years and it's allowed me to have an amazing following and support system that has trusted me, respected me, supported me and helped me build a business that has kept me working from home to raise my boys. I am blessed and I thank EVERYONE who has helped me be where I am today; my husband, my family, my friends, followers and customers.
There are days that I wonder if all my hard work of blogging, taking photos, spending hours on my phone and posting a ton of content on social media is even worth my time and making the slightest bit of difference. Today another person confirmed YES, I am making a difference. Even if helping ONE family, or ONE person battling Achalasia, or any struggle in life, IT'S ALL SO WORTH IT!
I had just gotten home this afternoon from picking up the boys from school and noticed I had a private message waiting. I clicked to read it and it was from a sweet Mom named Nicole. Here is what she wrote, "I wanted to thank you for sharing you and your son's stories. My son, Isaac, had a very similar story.... 9 yo, diagnosed in December, Heller with fundo in January, felt better but not quite, changed doctors and found out they didn't cut enough and it was still very constricted. We were feeling alone and unsure if we should do the POEM until I read your story. It guided us to the decision to get a POEM. He is going this coming Monday to get a POEM in NYC with Dr. Stavropoulos....first guy ever to do a POEM. I am excited and anxious because although Isaac has adapted and forces his food down, he seems to be struggling more again. How was your son's recovery? Any surprises you weren't expecting?"
THIS message MADE MY DAY! They felt alone, ALONE and unsure if they should do a 2nd surgery until reading OUR journey! Once I learned Walker's first surgery was not successfully done, I KNEW we needed to try one more time at it with a surgeon who knows what he is doing. Let's cut and get the myotomy corrected before doing any other procedures in hopes that he lives symptom free for YEARS! I am SO happy to hear our journey lead them in the same direction. We proceeded to have small talk back and forth and I said I'm fortunate to meet other Mom's who have warrior sons. We must stick together and keep in touch! She proceeded to say, "You honestly were the sign from God telling me that there was someone else going through the same thing. The adults talking about the disease just doesn't give you any insight. That is fantastic to hear!! That is what I am hoping for!" CUE the tears!!!! Wow, just WOW. No words but this confirmed everything i'm doing is helping at least ONE person. That makes it worth every second. I know I now have a new friend, and we know of yet another boy around Walker's age battling the same disease and struggles. It truly helps knowing WE aren't alone either and have someone who gets what we go through and can message them when needed! I'm grateful for her message today and wish them the best of luck! I can't wait to hear how is surgery on Monday goes, and know this is the right decision for them!
We can't help everyone, but everyone can help someone. That's exactly what I'm going to do.
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