Fingerprints of God and speaking hope...

Recently I decided that I should look up a Chiari Support Group. I know that there are other Mommies and Daddies who are living a life similar to ours, and part of me was curious to know a little bit more about those families. I don’t feel a lack of support, in fact, I always, always feel overwhelmed with support from friends and family. Not all of our friends know exactly what we are going through; we actually only know one person who has an Arnold Chiari Malformation, (ACM). But some of our friends have kids who have had surgeries, or trouble with reading, or some form of health issue that has resulted in hospital stays, long nights, doctors and daily medicines. So, with all of that added up, I’ve never really felt “alone” in our life.

So, as I set out to find a support group, part of it was just simple curiosity, and part was the feeling that I should be doing this. I should, for the sake of my child, be super knowledgeable about what is going on in the world of ACM. Big mistake.

(Just to be clear, we DO keep up to date with Bria’s doctors, tests, and the current status of her condition. We do not spend much time doing Google searches, and as I will write about further on, I think we are right to do so.)

I logged on to the site and began reading some of the stories written by parents. Most of them were similar to ours, some were worse. There were lots of terms that I would not have known 8 years ago, but that were now very familiar to me. There were stories of 4, and 5 surgeries…and no relief. There were stories of sudden death, and complications following surgery. As I read, I found myself taking breaks, closing my eyes, and holding back tears. Memories were coming back to me, yes, but there was something else about it that just did not sit well with me.

Thankfully, my mom called right then. Of course I burst into tears, and was probably unintelligible. I felt like THE BAD MOMMY. I felt like, maybe, we hadn’t really realized how BIG this was. We never really sat down and used those dreaded words: chronic illness, disease, lifetime of pain. I had not become the mom that was endlessly, constantly thinking about my daughter’s affliction. I had not signed her up on a special website for kids with ACM. 

(Please understand that this does not mean I have not, and do not, suffer inside, constantly, on some level. I certainly do.)

But guilt reared up inside me and caused me to ask myself, was I doing enough? Was I ignoring this possible cloud of doom that hung over my daughter’s life? Should I be telling her that this is even more severe than the two brain surgeries she had already lived through, not to mention the countless days of “medical mayhem” she has bravely faced for the past 6 years?

Those were the images I had been reading on my screen. The pain from these parents spilled out in words, spreading across my computer and filling my belly with hot stress. I knew all too well the feelings of helplessness and fear that beat at their hearts when they looked at their children.

In sheer frustration, I told my mom, “This is just not what I WANT for my daughter!” I hate hate hate the idea of something that is more than she is. Something that will rule her life. Something that makes her different, causes her to struggle.

Praise the Lord for my mom calling me at that moment. As we talked it out, and I cried, she helped me to see that ACM is not, will not, rule my daughter’s life.

Here are some facts about Bria:

She does have ACM, and she in all likelihood will deal with it her whole life

She may have to have more surgeries

She will struggle, and she will be different

BUT, here are the facts that we choose to focus on:

She may have ACM, but it is not who she IS

She may have to deal with it her whole life, but we DO know someone who can heal her, and He is more awesome than any physical hurdle we find ourselves up against in this lifetime

We cannot see the future, so we will not fear for future surgeries or injuries, but we will trust in God as we move into the future. He will take care of each day as it gets here

As Bria struggles, she will become the strong woman God intends her to be, and she will gain empathy for others who struggle

The ACM may make her different, but she will learn to understand that all people are different. All people have pain and fear, and it is this commonality that makes us similar, rather than different

My faith has helped me to see that what we SPEAK into our lives, our children’s lives, and the lives of those around us can truly change the outcome of our destiny. Am I saying that all I have to do is say something to make it true? Not necessarily, no. But here is what I do believe about the power of speech:

~ "Let no corrupting talk come out of your mouths, but only such as is good for building up, as fits the occasion, that it may give grace to those who hear." Ephesians 4:29

-Words can bring fear and limit potential. If we choose to talk to Bria about her ACM and, at the age of 8, tell her that it will be with her her entire life, she will be limited by fear, and her ACM will become a part of her person, rather than simply a part of her body, which is imperfect and fleeting.

~ "The LORD is my light and my salvation-- whom shall I fear? The LORD is the stronghold of my life-- of whom shall I be afraid?" Psalm 27:1

-Words can build strength beyond what we can imagine. Yes, Bria struggles with physical and mental hardships that come from her ACM. (There are things that she will struggle with her whole life, and we are so blessed to have her here at home where she can master the world in her own time.) But, she also reads at a high 5^th grade level and is stellar at math and science, WooHoo!  Her brain has limits, and limitless potential, all rolled into one breathtaking little soul.

~ "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." Psalm 139:14

-God CAN heal her. And just because it has not happened does not mean I will ever stop praying for that miracle. And just because it may never happen does not mean that He still does not have wonderful plans for her life and future. I will not let my fear feed my words. I will not allow my words to rob me of my faith, or stop my trust in God. My words are nothing compared to His plans!

~  "For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

As my mom and I ended our conversation, she said, “I am not sure what Bria will do with her life, but I can tell you it will be something amazing, because she is the most unique and wonderful little girl I’ve ever met.” 

Of course, Gamma will be partial, but isn’t that how God sees us all? We have our differences and struggles, and none of us have perfect bodies or minds. But we were all created for a specific purpose, and we each have a beautiful, awe inspiring soul. God has the roadmap, and He holds each day in His hands. 

So….will I be reading any more of those stories? Probably not, at least not yet. For now it is enough to take each day, each MRI, each possible symptom or struggle, one at a time. Allowing myself to worry over possibilities will only change the way I look at my daughter, and in turn, the way she looks at herself.

 I want her to see herself as God sees her.