This narrative began on Rare Disease Day, which is kind of a strange and uncomfortable thing to persist in talking about, because it doesn’t affect very many people. After all, it is RARE disease day. Nobody really notices that day. I know I didn’t, before now.
But I want to tell you all how God steps in to these rarest of situations and shares His wisdom, and reveals His glory.
When Trace was born, we had no idea that he would be different. The only hiccup in my pregnancy with him was a threatened miscarriage at 9.5 weeks. I powered through that day with prayer, speaking life over him, claiming Malachi 3:11 over my pregnancy (hence his name!) and declaring that he would live to bring glory to the name of Jesus. From that day on, it was smooth sailing. His home birth was textbook perfect and uncomplicated, and there was nothing detectable in his appearance that would alert us of problems to come. We had no diagnosis until he was almost two years old. When we finally discovered the name of that demon, it was so rare and so unknown that there was barely any information about it.
There was no direction. There was very little research to be had, on the Internet or anywhere, other than a fabulous parent support group on Facebook. There just was hardly anything, to the point that by the time we met with the genetic doctor and counselor, in the time between having received the test results and being called in to “explain” what those results were…that by the time we walked into that room, I as the parent knew more about his disorder than the doctors knew. Suddenly, I became the expert in the room. Terrifying.
There is no rulebook for this. There is no handbook. There is no list of things to expect. There is no list of routine doctors appointments to go to, because we don’t know enough about this to know what systems are affected or what we need to watch for. There is no projected life span. Parenting a special needs child is a totally different ball game. There is no “What To Expect When You’re Expecting a Special Needs Child” book (well, maybe, if the child has something more common and that is routinely treated). Some of us don’t even know we have a special needs child until we can’t deny it anymore. Until they’re two years old and they still can’t walk, or say his name, or do much more than that.
But, let me tell you what my saving grace has been:
I am a Spirit-filled believer in Jesus Christ, and I pray in the Holy Spirit. And I began to discover, probably somewhere right around his first birthday, that when I would sit in my quiet time and just adore God; that when I would pray in the Spirit, and if I would just sit still long enough to listen (that is paramount!) – that God would whisper a word or an instruction into my heart. It took me a little while to start to recognize those little ideas and nudges as hints and clues from the Almighty Himself. But I remember the day that I DID recognize it for the first time, and it was like a bell just went off in my head and I realized…”THAT’S IT!! THAT’S THE ANSWER TO MY QUESTION!!” I was floored. Literally, went back to my prayer closet, on my face in praise and thanksgiving for a tiny but huge insight into helping my baby.
A lot of times, those words did not make sense. They did not fit the picture of what I thought would be next. Sometimes those words would come from a suggestion from another person or a conversation that led my thinking down another angle, but always with some kind of inner knowing that this was my God-download for whatever situation for which I had been pressing into God in recent days. Sometimes things came to me out of the blue a day or so later, that were so random that I knew it would be crazy for me to even say it or attempt it. Sometimes there were things that I didn’t even know were going on that I would be shown in the Spirit before we got there. You can call me crazy, but every time I tested those ideas, or those words or instructions, they were spot on. It worked. Every time. God has more than proven Himself, time after time.
In my prayer time I heard “nutrition” and started giving him Ningxia Red, and suddenly he started gaining strength, and being able to stay in a sitting position. I heard the word “mind” and learned that there was a supplement called MindWise to support the brain. I started giving him that and within days he took off babbling with all these syllables and sounds we had never heard out of him before, and putting mental processes together to sit himself up or to travel around the house. I heard “focus” and went to an essential oil known for balancing the brain, and he was soon able to feed himself and to eat without choking. He is now on a strict regimen of Young Living supplements every day, and an allergen free diet, all of which I was led to through prayer. And I would just be left with my mouth hanging open, feeling giddy at the results, and hopeful that there were answers out there for me if I just would ask and LISTEN.
And so, my parenting style with Trace has become “Ask God First.” And really, that has now become my parenting style with all of my kids. It became habit, instinct, to daily meet with the Lord and ask Him for that day’s clue. That’s how I found his food allergies, when someone mentioned “wheat” and I changed his diet and he miraculously stopped throwing up, after vomiting 50 times a day for the first 19 months of his life. (That was after traveling over a holiday to see a GI specialist and her whole panel of experts, who did a battery of tests and told us there was nothing wrong.) That’s how I learned to get him to sleep when we went through a phase where he wasn’t sleeping at all. I was given insight into his fears and anxieties. That’s how I’ve been led to what supplements to try, what to research, what avenue of targeted nutrition to pursue next, until most recently figuring out how to get this child to nap and fall asleep easily and consistently for the first time in his life. And most importantly, I learned how to pray for him.
I asked our prayer team at church to pray for him, and boy do they. My Victory Church family knows how to PRAY! And from that day forward, this boy has made astounding progress; sometimes with just leaps and bounds of physical improvement even between therapy sessions, performing skills and meeting goals that were not happening just two or three days prior.
Tell me God doesn’t exist, and I will introduce you to Trace Malachi, my brave warrior.
My son, whose baby blue eyes know the secrets of the universe and whose happy hands and total-body excitement can make an entire room of people smile;
My brave messenger, whose words are yet trapped inside his head, but who understands absolutely everything that is said to him, follows directions, and has no trouble communicating that he wants a snack!
My boy, who is never happier or more proud than when he is proudly STANDING UP and pounding on our piano;
My trick pony rider, who rides horses backwards during physical therapy;
My Trace, who is seizure free without medications.
ALL OF IT to the glory of God!!!!
I want to encourage you, that when you are in a situation where there is no guidebook, that you HAVE a Guide. And his name is the Holy Spirit. His name is Jesus. And He changes. it. all.
He gives that instruction. But we have to be STILL ENOUGH to listen for it.
There is no other way for me to know how to parent Trace. Some days are still overwhelming. Some days I still don’t know what to do, and I still need to daily ask the Lord for guidance, and I still wonder what his future is going to look like.
But I do know this. I know that my God is my guide and He speaks to me when I choose to dwell in the secret place, instead of in worry. I know that He is the Healer. I know that He knows the future. And I know that He has given us a child with special needs to allow us to see HIS glory in our midst. Because not only am I being stretched and grown spiritually, in ways that I never imagined that I could be, but I have been given a front row seat to watch the daily miracles that I have been believing for in his progress and the things that he’s able to do.
Did you hear me?
MIRACLES!! EVERY DAY!! IN MY HOUSE and MY CHILD!!!
What kind of awesome is that?!
When we started this journey with him, we didn’t even know if we would ever be able to do anything, because it took him so long to be able to move or to sit up or to say Mama or to communicate to us that he was hungry or ANYTHING. It was just a mess. But God.
GOD has changed everything. And the only reason I am able to write this for you today is because I know whom I have believed, and I am persuaded that he is able to keep that which I’ve committed unto Him until that day.
I know that He who has begun a good work in me is able to complete it. And I know that He who has begun a good work in my son is able to complete that as well.
I know that because HE lives, I can face tomorrow. And that life is WORTH living because HE lives!
And so I want to declare to you today, that while the future for my boy, medically, is unknown; that while the outcomes are unstable; that MY GOD is stable, and He is able.
I believe that Trace is going to walk.
He is not going to need a wheelchair.
He is going to speak the name of Jesus, and he is going to take his story to thousands and impact them for Christ.
Just watch. Listen. Wait. My God will show Himself mighty, and we will see miracles before our very eyes. My child is a miracle. And I am so much richer because I get to be his mama.
And really…could he even be any more handsome?