It was almost a year ago that we sat in a neurologist office with Abigail for the first time to find out she unofficially met the diagnostic criteria for NF. It was also a year ago she was diagnosed with asthma. I had recently started to feel like I was closer to the side of sanity again. I had stopped fearing every new doctor's appointment as the next horrible thing that would happen. I wasn't freaking out about every new bump or spot on Abigail, certain it was her first tumor. I was starting to feel almost like the NF was just a part of our lives.
And just like the first time we heard about NF, I took Abigail to the doctor for something completely unrelated, and got sucker punched with something new. So now I am in the waiting mode to see if she has mastocytosis. At this point if she has it I am certain it is mild. The thing is though, it's definition is like that of NF...most cases are mild, some are not. We don't have any way of predicting what will happen.
I feel like I'm caught in some sort of weird parent nightmare. Because it seems unlikely to have a child with a disorder (NF is not technically rare) that nobody has heard of, and then to also most likely have a second rare disorder. I mean does that really happen? And if it does it doesn't happen to us...right?
I am overwhelmed with it all right now. I want to know something now (our appointment for the masto is at the end of November). I want to find someone to blame. I want to fix this all. It feels so surreal to be in the same spot emotionally a year later with something different.
As I write about all of this I also feel torn. I feel SO fortunate with Abigail because of things we have already bypassed with the NF. I feel fortunate that although both of these disorders leave her at higher risk for being on the autism spectrum, we see no signs of that. I feel fortunate that I watch Abigail learn new things, say new words, walk, talk, laugh, eat, play, and everything else a typical two year old does. I am very aware of how easy we have it, even with all of the medical stuff.
But honestly, the craziest part of all of this to me is the word that God has whispered since before Abigail came....hope...I need to learn to hope. And not just hope that everything turns out okay, or that she outgrows the masto and never has the bad stuff from NF, but hoping in the one who can save her; the one who knows the cure to all things.
While we waited on a baby God told us to hope in Him and what He could do. And the story he spun into motion with our little girl could not be more beautiful. The things He is still writing and doing, have spurred me on to hoping for more than just a little girl for us, but hoping for the lives of her birth family to be changed by her presence in the world. And then learning about the NF all we could do was hope in Him. There isn't a doctor out there with the answers for this disorder. Nobody can tell you what the future holds. So I slowly remembered what it was like to live in hope; how it feels to be held up by the one who hung the stars and moon. And for whatever reason God gently nudged me over the summer to hang the word hope over all of the windows in our house. To remember to look at the world outside with hope in my eyes; because I know the one who can do all things.
And here I am again, losing hope. Feeling like I'm unable to swallow this, and trying hard to read what I can, talk to people, do whatever is in my power to figure out what the future holds. I don't believe that God has caused any of this suffering. I do believe that He refuses to waste it. And so with each new thing that comes into our lives it seems to all point back to that one word. The one thing that can lift me up and keep me moving forward when all I really feel like doing is laying down and waiving my white flag. But I can't give up. I can't back down after getting a taste of the things God does when we put our hope in Him.
"And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ will himself restore, confirm, strengthen, and establish you." 1Peter 5:10
Ready to be restored, confirmed, strengthened, and established by Christ,