Life is hard, isn't it? All those phone calls, medical terms (followed by insanely scary Google searches - stop it), doctor appointments, no-sleep nights because of the "what ifs" drifting in. It's overwhelming. To top it off, you actually have to be a mother and love, discipline, nurture, make food, take them places, socialize, eat (please eat), shower.
I was lucky. Life was relatively normal for about 2 years into motherhood. I mean, it was hard but I thought that hard was normal (and to an extent, it is normal. ALL mothering is hard, special needs or not!). And then we got the diagnosis that made some of the hard better explained. Didn't make it harder or easier, but explained so we could do something about it.
Then added on top of normal mothering stuff, we had the doctor appointments, therapies, trying out diets (that didn't work), fishing through quack doctors vs. real doctors. And we came to our new normal.
It was hard. I am coming to the conclusion that it gets more difficult every year. When they're babies, you just do everything for them. Feed, change, feed, change, rock, feed, feed, change, play, read. But as they get older, they have their own ideas, their own attitudes, their own sins (which look an awful lot like your own, right?). Meltdowns, tantrums. And again, that's just the normal stuff! If you have a special needs kid, there is the "is this a meltdown or is this _________ (autism, medication, depression/anger from being different, blah blah blah)?"
We just got our second diagnosis for our son, Moose. I was not expecting a second label on his life. Now, I love our neurologist because he told me (and I knew from his autism already) that the diagnosis doesn't change the kid. He is no different today than he was yesterday. The same is true for your kid. He or she has not changed with a diagnosis. To paraphrase Popeye, "they ares what they ares and that's all that they ares." And it does not change the key factor: you love them and God loves them even more. Even more!
Sometimes it seems like we just want to question God in these circumstances. Why? Why? I understand and I don't think it's wrong to ask why because we are rational people and we want answers. That's why there is science and research and history and -ologies of all sorts! We are a people who long for answers. I don't have most of those for you (sorry, I don't even have them for myself). I do have ONE answer: Jesus Christ.
Some days I wake up and am drowning in my doubts and my questions and my fear. Just breathing is hard (not to mention this baby that grows daily making breathing always more difficult LOL). Just surviving is hard. I am a mess. And then, I read His Word, speaking encouragement into my mess. Speaking beauty from these seemingly dense ashes. Speaking hope into our future. God is FOR us. God LOVES us. God LOVES my son (and my son and my daughter). God FIGHTS for us. God does allow hard things; this is a world that is broken with sin - that is a fact. He does NOT bring the sin or temptation on to us, but He is there to help us cope with it, fight it, flee from it, and to have victory over it. VICTORY! We are not called to have spirits of fear. We are not called to drown. We are called to take up His Word, His Sword, His Spirit and fight for freedom, for love, for hope, for charity, for justice, for faith.
Pray to him. It's not hard, there's no formula, no right or wrong way to pray. Just talk to Him. He's listening and He wants to hear you. He wants to help you. Comfort you, encourage you.
So I know it's hard and if you EVER need a shoulder to cry on, I have two. I'm happy to listen and share our experiences. But I do not have most answers, just one. Jesus. Lean in, lean hard, listen, love. He will guide your ways. He is the light on the path. He's our flashlight in the darkest of days. He loves you and your children.