As I sit and write this, it's still dark outside and the house is silent. I should be sleeping but this mama's heart is aching and my mind is whirling so I'm putting the words onto paper in hopes that it can give someone else some hope... just to know if you're walking thru one of the toughest battles of your life, you're not alone. I don't have wisdom or words to fix the pain, but one thing I have realized is that in those dark storms of life, a lot of truth reveals itself. If you follow me on Facebook, you know there's been plenty of highs and lows, but one thing that's been constant is the peace deep in my soul that God is faithful and He's carrying me thru this nightmare when I feel like I've lost my own strength and will to fight anymore. I call them God kisses... His gentle reminders daily that He's got this. I've had some incredible real and genuine family and friends stick by me thru the ugliness of my pain and hurt, reminding me it's ok to be me and that I don't always have to be strong. Real and loyal friends will love you thru the highs and lows. They will walk thru the hell beside you and let you be you. They aren't afraid to question you or let you know when they disagree with you, but no matter what, they've got your back. These are the life lessons my mama's heart prays that my children will learn at a young age and grow up to be a friend that their friends label as loyal and genuine.
My mama's heart aches when I can't take the pain from my children. Pain from things they've seen and heard that no child of any age should ever have to experience. Pain from walking thru the middle of a nasty divorce of their mom and dad. Pain of moving out of a home they knew for 6 years, into split time between 2 separate homes. Pain of living day in and day out with a rare and progressive disease that robs my precious 10 year old son of his ability to do the every day things you and I take for granted while his mind stays sharper than ever so he constantly is aware of his failing body, and his siblings are helpless to sit by and watch and spend hour after hour at specialist after specialist while each one desperately seeks to find some sort of answers of ways they can help this sweet little fighter named Kai. Pain that my mama heart knows that only God alone can comfort and heal and use for His glory. But that doesn't change the fact that my mama's heart would take it all on myself if I could, just so that they didn't have to face it.
A few months ago, I started noticing a decline in Kai's health. It was gradual, but it was there. His balance became more and more "off", he was fatigued all the time and at the most simple of tasks, his speech was more and more slurred, and simple every day tasks like eating and brushing teeth became more of a challenge. He knew it too. He shed a lot of tears of frustration as his incredibly brilliant brain told his body to respond and his body just didn't get the memo. Fast forward to 2 weeks ago. I got a call from his school saying they were extra concerned as his special needs team had observed him during the day at school and were noticing significant struggles with staying balanced on his seat and eating in the lunch room. I knew in my gut that we were facing a new stage of his ever progressing disease. Only a few days after that call, Kai was sitting at my kitchen table eating dinner. It was a Saturday and my mom had flown in town to surprise my kids for the weekend to just hang out and spend some time with us as she has been one of the faithful prayer warriors for me this past year and a half especially and knew that my body was just worn down and beat up and needing her mom. The kids were at the table eating grilled cheese and soup... a favorite in my house. Suddenly Kai began to choke and gag. He got it out (I will spare you the details), but it terrified him. Quite honestly, it wrecked me too. When Kai was diagnosed with Ataxia with Oculomotor Apraxia Type 2 a few years ago now, the lead specialist had warned me that eating would eventually become a problem. I prayed against that. I didn't want my little man to have to have yet another thing taken away from him that would make him "different" from his peers. He already had enough struggles and it just didn't feel fair to make food (which he is all boy and loves!) be something restricted as well. See his disease causes something they call "impulsive eating". That doesn't mean he just eats anything and everything :) It means that when he eats, he puts as much in his mouth as possible and tries to just gulp it down to minimize the amount of energy used to chew. It's almost a self preservation to try to conserve energy, but his body doesn't recognize that by doing that, he's causing himself to risk choking.
So Monday morning following the incident, I emailed the school to let them know to please just keep an extra eye on him in the cafeteria when eating, and then made a call to his specialist team at Duke to see what they thought our next best steps would be. Our lead Duke specialist now is an incredible man named Dr. Eddie Smith. He's the head of the MDA at Duke, as well as one of the top neurologists in the area. He's simply precious, as he in no way had to take on Kai's case because Kai doesn't have any form of Muscular Dystrophy, but Dr. Smith agreed to take my boy under his wing and work to find answers to help him any way possible. Dr. Smith usually has an 8-10 month wait for his clinic hours, and we were scheduled to see him for a follow-up in April, but following my phone call Monday morning, his nurse called me back Tuesday to say Dr. Smith wanted to see Kai before his regular clinic hours on Friday! What a God kiss!!! So bright and early Friday morning, I loaded all 4 kids into my car (they are all on track out so get to adventure to all the appointments of the day with me!) and we took the trek to Duke together. We were ushered back to our room immediately without so much as 3 minutes of waiting time, and Dr. Smith came right in. He has a heart bigger than his body and is a brilliant mind full of compassion and empathy and an incredible way with kids that makes a child forget for just a few moments that they are at a specialist at Duke Hospital, and just feel like they are a regular kid for a moment. He had Kai and Thayne laughing within minutes, and began evaluations right away. We were ushered over to another wing of the hospital where we were met by another team... a physical therapist, and occupational therapist, and an assistive technology specialist. That entire team spend over 3 solid hours with my 4 kids and I. It was incredible. Information overload. I walked out knowing that although this journey sucks, and I still don't understand why God chose me to walk this road, I know that He's walking it with me. After all, it wasn't by chance that after 6 years of walking his journey of Kai's disease we are living only 20 minutes from some of the top physicians in the United States and have such and incredible team of brilliant minds working to find ways I can best make Kai's life just a little bit less of a struggle. It's a God thing.
So I walked out of that appointment 2 days ago now with my little fighter and his team of cheerleaders (his siblings :) ), with a lot to process. Kai is going to be fitted for 2 new forms of leg braces... one which he will have to wear over his current braces to help keep him from stumbling and falling so much as he's losing flexibility in some of his leg muscles. The second will have to be worn in the evening and night (to sleep in) to help stretch the tightening muscles while he's at rest. He will be going back to Duke for an assistive technology evaluation to try to help get additional ways we can help minimize his fatigue at school and be able to still have him perform to his maximum potential (ex: dictation programs on his school laptop to minimize his fatigue from writing or typing). He will be going back to Duke for another swallow study (long technical name that I won't bore you with!) to see how we are going to need to modify his diet. He will be meeting with a team of "mobility specialists" that will start to figure out some modalities (scooter/chair) that will help Kai get around especially when he is extra fatigued. They will be fitting him for a wheelchair that I will be working to get him used to using when his body is extra fatigued so that he can use it when his class takes their trip to Washington DC for school this spring. He will be going back to his orthopedic specialist at Duke as they fear he's started to develop a curve in his spine from the ways he's had to modify his stance to balance and stay stable to avoid falling, and they also feel that one of his legs has grown slightly longer than his other in his latest growth spurt causing the curve to be magnified and he may need a lift added to the base of one of his braces to help balance the lengths.
So yes. A lot for this mama's heart to handle. My other 3 kids sat quietly and patiently and listened as the doctor rattled off "what's next". It's a lot for them to handle too. It's their brother. And nobody wants to see anyone you love walk thru struggles like he does. I won't lie. I ache inside. Every part of me breaks for each one of my kids. But I'm desperately trying to hold on to trusting that God is faithful and that He knows the aches deep inside each of my kid's hearts and He loves them even more than I do. And although that's so hard for me to fathom, I know deep down it's true. There's some reason He's chosen me to walk this journey. It's definitely not one I'd pick for myself. I'm too much of a wimp for that! Some days I beg Him to take it away. I cry and scream "why God? why me? why my kids?" a lot. But when it all boils down, I know that God doesn't waste any of our experiences. For some reason God's picked me to put me on this journey to bring honor to Him. So if somehow I can do that thru this hell, then I want to. Whether it's touching the heart of another girl who's a survivor of an abusive journey, if it's a fellow single mom struggling to make ends meet, if it's another mama of an "extra special" child fighting for answers or just someone to understand the pain in her heart... I want God to use my story so I'll keep fighting and keep walking, one foot in front of the other. And my mama's heart will keep praying that He will do something amazing in and thru my precious 4 kids while He's at it.
