Beautifully Crooked

One day- no, one moment- can change your life forever. Our family had a moment like this on November 30, 2015. It was supposed to be a routine MRI. I told her we would go get ice cream when it was done. I wasn’t able to follow through on that promise. What followed was the most terrifying day of my life since the day she was born (that’s a whole other story!).

My 10 year old daughter, Jada,

The moment we realized her smile had changed dramatically.

had what we were told was Bell’s Palsey. Her left side of her face had been paralyzed for a month. I took a picture of her one day during a family bowling trip. “Smile!” I told her. She replied “I am smiling!” But no, she was not. It was only half of a smile. We ended up being referred to a pediatric neurologist who diagnosed Bell’s Palsey after a very thorough examination and put her on steroids and antivirals. But it didn’t help. That is what led us to the day that changed everything. We didn’t expect to find anything abnormal. She seemed pretty normal other than being a bit clumsy sometimes. So I didn’t know what to think when they got her a wheelchair and sent us straight to the neurologist’s office. I thought it strange, “My daughter doesn’t need a wheelchair, she’s fine. It’s her face not her legs that are paralyzed.” I texted my husband to let him know what was happening. He of course was wishing he had come and began to panic. He was an hour away.

Meanwhile, I tried to remain calm and collected for Jada. I had to be strong and not show how nervous I was. Then the Dr. Asked me to step into another room. With my husband on speaker phone, we heard the words we were dreading. “Your daughter’s MRI came back abnormal. We found a growth.” I went numb. My husband began to panic over the phone and made arrangements to come right away. I didn’t let it get to me yet, I couldn’t fall apart in front of her. I just couldn’t. It was a long afternoon of waiting. Waiting to be admitted, waiting for my husband, for the neurosurgeon, and waiting to fall apart. Then came the moment I had to tell my sister over the phone. It was the first time I had to speak it out loud myself. I stepped into the hallway where I could still see my sweet Jada playing on her phone through the windows in the doors. I began to talk but the word ‘growth’ could not come out. I couldn’t breathe, it hit me. This isn’t just going to go away by itself. I shuttered to think of what she was about to endure. Feelings of helplessness flooded over me once more. I had felt that before going to see my newborn baby in the NICU almost exactly 11 years before. We have called her our little miracle. She was such a strong little preemie, born at only 1 lb 10 oz.  We thought all the hospital stuff was behind us. I was always so thankful she didn’t remember any of it, she knows just what we’ve told her. But this, now, she will never forget. She’s reminded every time she looks in the mirror, or has to find a straw to drink with. Or when the itches underneath her skin come and she can’t scratch them away. And I can’t take it away. The days of kissing boo boos to make them better is long gone. 

When things are out of our control, we have to trust in our God. We don’t know why our daughter has been chosen for this journey, but we know He will never leave us nor forsake us. We also know God’s word says we must count it all joy when we go through trials. In my fear and trembling, He speaks peace. Though I desperately want to hear it, if I let the fear cripple me, I will not hear it.

Yes, we have a long journey ahead of us. But we trust in our God and we will not be shaken. My Jada smiles her new, beautifully crooked smile. And she is my hero as we walk this journey together.

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.                                    James 1:2-4

The Lord himself goes before you and will be with you;  He will never leave you nor forsake you. Do not be afraid; do not be discouraged.                                                     Deuteronomy 31:8

I keep my eyes always on the Lord. With Him at my right hand, I will not be shaken.          Psalm 16:8

First blog post

My first blog post. Well, actually this is my third time writing it. I keep having to stop writing to do something else and when I come back it is gone. But I’m determined to get this first one posted, and I will.

I never thought I would start to blog. I guess this is more of a journal for me to put “pen to paper” what all has been on my heart. The only reason I’m journaling here instead of privately is because God told me to, lol. I’m not the only parent that has had to watch their child suffer. In the moment everything happened and the weeks to follow, I had few words to share. My husband did most of the public updates on Facebook because I just couldn’t. My energy was fully focused on Jada and caring for her and making sure my youngest daughter Sydney knew that she was still loved and was still important.

I am finally finding my voice about all we have experienced and continue to go through. My prayer is that it can resonate with someone else as well. 

So, if you have followed our journey so far, praying and supporting us, Thank you! Maybe you’ll enjoy finding out more of our journey on a deeper level. If you are a parent of a child diagnosed with a brain tumor, it is scary, I know. But you are not alone, and will find strength you never knew you had.