More Than Their Diagnosis: 5 Ways Your Family Can Flourish Despite Your Child's Diagnosis


2020 was quite a year for everyone. I could only imagine all of the overwhelming, unthinkable, heartbreaking stories that will never be told. I was due to give birth to my sixth child on February 14th, so I was really looking forward to an AMAZING year, sleep deprived, but AMAZING no less! Little did I know, that delivery would leave me with a dislocated pelvis after 14 hours of labor and having to go to physical therapy 3x a week….which I never went to because as you know, the entire world shut down!



I wish I could say that was the worst of it, but the year just worsened defeat after defeat. But with all the bad news and heartache the year brought, the worst would be the phone call of February 3rd. Baby Aaron was born


2 weeks early, so I was discharged from the hospital on Feb. 3rd and I wasn’t even home 10mins (no exaggeration) when my phone rang. It was a specialist saying that my daughter failed all 4 parts of her intellectual exam and should be tested for any possible genetic disorders.

Exam after exam and we finally got some answers. My little girl was diagnosed with Duplication 9 syndrome, an exceedingly rare genetic disorder. And just like that our world was turned upside down. My mind was flooded with questions like, will she be treated differently? Would she ever be able to understand that she has a disorder? Do I have to parent her differently now? How do I tell her siblings? Would she grow up and get married and have children? And that was just to name a few. So I hopped in my car alone, drove to the nearest supermarket, parked and cried. But this was no ordinary cry. This came from deep down as I said, “Lord I am not ANGRY with You for the cross you’ve given us, but I will need help to carry it EVERY DAY.”

I did not feel this SUDDEN PEACE come over me. All my worries did not just up and disappear. However, there was a new level of NEARNESS that I began to experience. I felt, and still feel, God’s presence ever so near because leaning on God was not an option at that point, it was essential. He guided Me every step of the way, and NOW I am at peace and my baby girl is thriving. I learned a few things that would be heartless of me, callous even, if I kept them all to myself. Although a diagnosis can feel discouraging, it is not a dead end, just a detour. I first had to…


Accept

I had to accept my new position. The longer I danced with denial, the longer my daughter would go without the help and services she needed. That does not mean refrain from getting any second opinions. It would be wise to approach a pivotal situation with such care, should the Lord lead you in that direction. Believe that God knows exactly what He’s doing. Then I had to…


Educate Myself



I had to search up anything I can find about her disorder. I had to do this to know what to expect. I needed to educate myself because when she throws tantrums or lies right to my face, I need to determine the line between a child’s sinful nature and what she can actually comprehend due to her disorder. And let me tell you, that line is pretty thin my friend, hence the leaning on God. But educating yourself can’t stop there because you can get very discouraged with all of the things the “internet” will say your child can & cannot do. So, educate yourself on what the Word of God says about you and your baby! Keep those promises written down and in your pocket at all times because you will need to whip those bad boys out…often! This isn’t a one stop shop, you will get more discouraging news from doctors, teachers etc. along the way, but keep in mind that the power of science will ALWAYS take a knee to the power of God. My next step was to…


Learn HER

No two people are the same. Your child’s disorder may not look like my child’s disorder. “Joe’s ADHD may not present like little Timmy’s ADHD” Although any info that we obtain is extremely helpful, it’s more of a guide. Only YOU know what’s best for your child and YOU know your child the most because the Lord entrusted YOU with raising them. Maybe doctors say that children with ADHD cannot focus for more that 10 mins at a time, but your precious little Timmy can focus for 25 mins if he has headphones on. LEARN your baby’s blueprint for their sake AND yours. This next step is the toughest because of the world’s current state, but next you should…


Find/Build a Community

You will need someone to lean on. God should always be the first person you turn to, but sometimes you just need a person to cry with or laugh with or just BE with, and what better person than someone who understands your situation firsthand. I have a pretty amazing circle, but they don’t quite understand what I go through like someone who has similar experiences with. Perhaps there’s a single mother who has a child with special needs, can you imagine what a grocery store run can possibly be for her.


But you can offer assistance to her and then she can do the same for you. Community is very important. And lastly, I had to… fully…


Pass the Baton

Any new tricks or hacks or strategies that you learn, pass it on. Parents of children with special needs are not always on the same phase. So maybe someone is in denial and not ready to receive any advice or information from you but make yourself available. Don’t be heavy handed with the “you have to try this,” but rather “hey, this is what worked for me.” Everyone has social media these days, write a post because you never know whose eyes it’ll come across. I’ve never even heard of the term “Diagnostic Kindergarten” until my daughter needed one, but you better believe I’ll be shouting it out now just in case someone needs it. If you are currently reading this and thinking, “what’s diagnostic kindergarten,” reach out, seriously, I’ll be more than happy to help.

So don’t feel defeated mom! What may look like a dark road ahead is just a road waiting to be illuminated. A new chance to explore your baby over and over again. You may feel like you’ve been thrown a curve ball. And you feel like you’re missing with every swing. But the direction of that ball was NEVER a surprise to the pitcher. The ball was pitched with purpose. So change your angle and lean in to God. Your family CAN thrive, your family CAN have peace, your family CAN be fun and fully functioning! Now take your stance and let’s play ball…Batter Up!


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