Goodness. I'm not even sure where to start with this blog. Can I be honest with you for a moment? ... I'm not even sure I want to write this blog. Not because I don't like getting personal but because I don't like being negative or focusing on anything negative. BUT! I know it's important to share both good and bad because that's how people can relate to you. It shows a vulnerability and a realness that allows YOU guys to connect with me.. even if we've never met. I know many of you love when I keep it real with you! Especially on my couple's postings like the one I wrote on Sept. 23rd and another I wrote back on March 6th. So I'm going to do the same tonight.
Last week was absolutely amazing. I got to meet Daniel Radcliffe since he's filming a movie titled Imperium in where I live and let me tell you - that was probably one of the coolest things I've done to date! I shared a copy of Abandoned with him and asked him to sign an additional copy; to which he did! The coolest thing was when he took my phone from my hands to snap a selfie with me, or well.. an ussie. Even if it is totally blurry. lol
Then fast forward to this weekend and it too was matched with just as much wonder .. even though there were a few small downs. I started off my week with some amazingly beautiful women & fellowship over a delicious breakfast from Demolition Coffee in Petersburg, VA. I'm telling you, when I'm around the right women, my spirits are just lifted beyond imaginable and getting to fellowship, talk about God, pray, eat and laugh... it's unmatched. But, I felt in my spirit something was on the horizon. I wasn't quite sure if it was good or bad, but I could feel it. A change was coming.
The same night as our amazing morning, Zophelia had yet another allergic reaction to something she's eaten many times before. Zeryk and I administered medicine to her, comforted her and I made a call to her pediatrician. She was just as confused as we were as to why so many random things were giving her reactions. Chips, strawberries, pineapple, sometimes green apples, grapefruit, mac n cheese... she had even had a reaction to steak before! We were at wits end, as was her pediatrician. Nothing made sense in the allergy realm. Shortly after our conversation, she gave me a call back to ask me about a few other symptoms that Zophie matched such as bloating of a top lip during a reaction, swollen cheeks during a reaction, dry lips on occasion and a fissured tongue.. and there it was. Our answer.
Zophie has a syndrome called Melkersson-Rosenthal Syndrome, which in short terms, it is a very rare neurological condition in which the face and lips swell and sometimes, it can even lead to facial paralysis. All of her symptoms matched perfectly and even though I felt overwhelmed by the influx of information, I felt relieved that we finally had an answer. Today, I visited the pediatrician to pick up more information and was given a list of specific foods to avoid, ingredients to avoid and just basically... a guide to re-designing our entire life. This could mean increased doctor's visits in the future to run tests to make sure she does not have Crohn's Disease and it could mean eventually putting her on medication.. but for now, it starts with dietary changes.
There are many children that respond well to natural changes when it's caught as early as Zophie's so I am relieved we have found an answer so quickly. She's only 4 years old, so, we have time to correct this whereas many children do not find out what is going on until late teens and sometimes adulthood. And we are so thankful for that! However, I found myself crying more times today than I thought I would! Goodness.. I've just been an emotional wreck today. No joke.
I went to the grocery store today to look for foods that Zophie may enjoy that weren't her favorites because seriously, I kid you not when I say she now has to do without EVERY. SINGLE. ONE. of her favorites. All of them! Pickles = gone. Plain chips = gone. Mac n Cheese = gone. Strawberries = gone. Pineapple = gone. Lunch meat = gone. ... the list goes on. All due to the ingredients. You see, with MRS, you have to avoid preservatives and certain forms of acid in the food or else it can cause a reaction that may cause facial paralysis if it keeps happening. Which means we are NOT going to risk that chance. It's a hit or miss. She may have a reaction or she may not.. but why risk it?? Whenever she would have a reaction, she would say her tongue was burning or her lips would bloat up like a balloon - specifically her top lip.
So today, I found myself literally crying in the middle of the food isle while looking at all of the food I just *KNOW* Zophie won't even attempt to eat and I felt overwhelmed with a madness for myself. Why did I allow her to enjoy junk food for so long? Why didn't I push vegetables and healthier options on her sooner than now? Now not only is she losing her favorites, she's gaining a bunch of stuff she hates. I felt stuck. I felt alone. I felt frustrated. I felt angry.. and I cried. I cried while holding a head of lettuce. Thank God for the beautiful woman who came over and asked if I was ok.. to which I responded with a vomit full of words, tears and emotions she probably wasn't even wanting! But, she took it, she hugged me and wiped my tears. I don't know who this woman was but if you're reading this and it was you... THANK YOU. You blessed my heart in so many ways. This beautiful woman shared with me some ideas of how to incorporate foods and change up recipes with natural herbs to flavor them. She helped me not just with shopping but to feel not so much like a failure.
After I got home with the groceries, I prepped dinner and started to feel a little calmer. Until Zophie started crying and begging for more juice. Her pediatrician limited her to 1/2 cup of juice per day and the rest, water. Zophie's not used to that. I admit, we've been bad with giving them their way and allowing them to have more of something we've said "only one" to before.. but today was different. This is different. I explained to her that having more than one cup of juice could risk the chance of her lips bloating up and hurting.. she understood but not without shedding some tears first. She doesn't get it but she does. She'll say to me "I MIGHT be ok though mommy.." or "I was fine yesterday!" and it honestly breaks my heart because she's right. She has been fine every time before but there were moments when she was fine with strawberries, and chips, and mac n cheese, and steak.. and all of the other things she's had reactions to.
So in this overwhelming fog of ups and downs today, I was standing in front of my stove staring at the empty burners with confusion over what else I was going to fix with the chicken. Mac n cheese? Nope, she can't have that. Pasta? Nope, she can't have that either. Maybe some beans.. she loves beans. Nope, she can't have the canned ones she enjoys. I stopped for a moment, took a deep breath and just whispered "Help me, Lord. Please." Because if I'm being 100% transparent here, Zeryk and I haven't exactly lived the healthiest of lifestyles when it comes to cooking and it was definitely showing in this moment of having to fix a dinner for our daughter that wouldn't risk giving her a flare up.
That's when I closed my eyes and God answered me with a vision of what to do. I popped some white rice in the pot and finely chopped raw baby spinach, fresh parsley and scooped out some Mrs. Dash garlic & herb seasoning. After the rice was done boiling, I tossed in the spinach, parsley and seasoning, folded it into the rice and sat it on the table along with our baked chicken and house salad. I was nervously waiting for Zophie to push the plate away but she ate it. Every last bit. And not only that.. she ate 3 helpings of rice! My baby who HATES vegetables loved her spinach rice so much that she wanted more. Gosh, what a relief.
While I know there will be days where she doesn't quite love what's for dinner, I know that in the end, we're making healthy choices for her that will benefit her in the long run. Not only her, but us as well. Zayne loved his dinner as well and so did Zeryk! It gave me a glimpse of hope that we can do this. All together. When I sat down to write this blog, I took a moment to reflect on the day just as I do every other day and I realized we didn't speak to the children as much today about yelling, fussing, fighting or being destructive. In fact, Zeryk and I both realized their behavior today was actually a complete 180! They were calmer, more focused, more loving towards one another and a little more understanding.
I'm not saying we are becoming advocates for healthier choices but I am saying if we noticed a difference in them in just one day.. I can't wait to see 7 days, weeks or years...
So tonight, I'm closing with a hot Earl Grey Tea from Starbucks and listening to one of my favorite relaxing stations on Spotify and I'm thanking God for His presence even in the chaos.