Today Noah has two doctor appointments. He is seeing a cardiologist, and will get an electrocardiogram, which is a sonogram of his heart. He will also be seeing a neurologist, who would potentially be overseeing his use of steroids if we decide to use them.
The fact the we need to see these two doctors today is still mostly unbelievable, and confirms further the reality that his DMD diagnosis is real, and that our boys heart needs to be monitored at such a young age, as well as nearly every other system in his body. Very soon he will also need to see a doctor in pulmonology, who will monitor his lung function.
My own heart breaks a little more on days like today, and yet at the same time I know how blessed we are to be able to give him the best care available. This disease has a rate of about 1 out of 3500 throughout the world, and my heart breaks for the many boys out there who suffer without any care at all, or poor care. There is much to be thankful for.
It's been a month now, and while the shock has worn off a little, I still find myself crying quite easily. The world now holds different meaning than it did a few weeks ago. Scripture, songs and sermons are now seen in a different light. The thing is, I know with all my heart, that the light I'm seeing is now clearer than it was before. Life has been distilled down to what means the most. I am able to focus my eyes on eternity so much easier, and I know that is exactly why God allows these things to occur in the lives of believers. Our suffering isn't worthless, it isn't meaningless, it is so very valuable. Priceless even. I know we have so much to learn, and a hard road ahead of us, but I refuse to prevent God from using this for his purposes, which I know are good.
The depth of our despair is deep, but God's love is so much deeper, and He is revealing himself to us everyday. I am in constant amazement at the conversations I am having with Noah and our other kids now everyday. The places I am easily finding to speak to them about eternity, and the ONE thing that truly matters in life, is astounding! I am finally seeing and understanding what God means when he says to speak to your children about Him when you rise up, when you lie down, when you walk by the road, and now it is easy! That alone is enough of a blessing from this situation. Our kids will know that the things the world thinks are important, are not. Beauty, athleticism, intelligence, wealth, worldly success matter not. We are now desperate to convey that to them, as all parents should be. But now we are forced to teach our kids that accepting Christ and furthering His kingdom is ALL that matters, and for this my heart is a so glad. We will not sit on the fence, we will not be lukewarm, and if this is what was needed to ensure our children and our family will all be together for eternity, I happily accept it.
1 day ago