For the love of God I'm not a hurdler

I remember sitting in my hospital bed getting to know my precious little girl when I first saw the spot on her arm. We were told that generally TSC is very easy to diagnose because the skin criteria that are common with TSC are usually present at birth and thus they can use those to help diagnose the disease. The spot is called a shagreen patched and is just an area where the skin has a raised bumpy texture. It almost looks like bad eczema. As soon as I saw the spot I knew what it meant. Although her blood work is still pending I knew it was a positive verbal diagnosis. It was a sinking feeling. A feeling of disappointment,sadness, and fear all wrapped into one. What are the odds right?! 1 in 6000 lives births, only 50,000 people in the USA, 1-2 million people total? And this is happening to US?
Well I got that feeling again today. I was nursing Emmaus and noticed another skin symptom. She has a couple areas of hypo-pigmentation on her right leg. I know it isn't a huge deal. It isn't like we found a brain or kidney tuber-however, it is just another thing that shows that she has symptoms showing up.
We have a MRI scheduled to check out her brain at the end of August. I am dreading it really. I'm super thankful that we got in quickly and will know better what is going on...but I am dreading it. I am fearful of what we might find. I am trying hard to trust God and be positive...however today I am Failing. Failing. FAILING!!!(luckily I had plans today and was distracted from my sad negativity).
My baby girl is so sweet. She is developmentally appropriate so far and I am so thankful for that! She is beautiful and has added more joy to my life than I could have EVER had expected. She is wonderful.
However- TSC is a bunch of bullshit. I feel like it is unfair that it is apart of our lives and that our sweet baby girl should have such a huge battle to fight at such a young age.
I think I am just tired. It really has been a LONG 3 years. We have had to fight a lot of battles and while we have had a ton of joy in those years & a lot of things to celebrate we have also had a lot of hurdles to jump over. I am tired of jumping.
Okay I think I'm done now. Sorry for the language . And for the whining that just happened.