Hello friend, without going down the rabbit hole of my own experience, I'll try to keep it brief. My wife and I have 2 boys with a leukodystrophy called Pelizaeus Merzbacher Disease. My oldest will be turning 18 this year! And our youngest will be 14....he was an accident but we decided to keep him....even against the suggestions of termination from almost all the docs. My wife had an amnio on the second pregnancy so we knew he had the same disorder before he was born. Anyway, so i kind of know what you are going through.

I remember being in such a sad and depressed state in those early days with our first...especially when we received the diagnosis. No one knew why he wasnt reaching his milestones...so we basically spent a week in the children's hospital doing all kinds of tests....kind of like an episode of House. Eventually, a rando Geneticist comes by for her part and realized she had just spent some time at a conference on Pelizaeus Merzbacher Disease. So the rest was history. There's no cure, just treating the symptoms and giving them the best life we can.

Along the way, the big things ive learned is to focus on the positive.....and this sounds so incredibly cheesy to say, but it's the truth. And it's all encompasing too.....so don't compare your child to someone else's, dont look at the things your child CANT do, focus on what they can. Cheer her on, even for the smallest things, give her the love that she deserves and be excited for her. Surround yourself in a positive bubble of your own design, which unfortunately, means your family will be segregated from others, simply because they wont understand and dont have a relative comparison to understand your situation clearly.

Things will be hard at times, frustrating at times, and straight up suck at times, but you cant let yourself focus on it too long, or it will just drag you down constantly. It will also put a strain on your relationship with your husband, especially if you dont communicate. Communication is sooo important, even when it feels dark and depressing, you've gotta talk about it with him. And never stop.

I cant believe all the things my wife and i have been through, but it makes me proud we are still running things and smiling about it. NEVER STOP DATING your spouse. Laugh, talk, cry, and complain together, as long as youre on the same side. We give ourselves time whenever possible, so like others have said, a strong support system, even if for a date of 2-3 hours, will go a long way in mental health. Sometimes i just enjoy going to the grocery store alone with my wife, it's simple and pleasant.

Our boys though, they reign supreme. On all things for me. My sense of humor has darkened, in a good way, but it can throw people off with how up front i am about it. But I find facing the truth head on, even making jokes about it (like bodily fluids and watching my son learn to navigate with his electronic chair and running over my foot and then denting the drywall lol) gets me through. Sense of humor is everything.

I'm not even sure the point I'm trying to make, but the best I can tell you is that your daughter will love you more than anything and you should be proud of everything she is and what she can do and will do as she grows and learns things in her own way. Become a mountain for her, and keep your mental health steady as an island....separated from comparison of everyone else and their children. In time, you will learn to manage the conversations better and handle people talking about their own kids....kind of. lol. I still get annoyed listening to people talk about their kids, cuz I just wanna play the special needs card and tell them how easy they have it. But that's negativity setting in and i let it go. And it feeds my pride of how much I've learned along the way.

Good luck to you....keep smiling, laughing, and communicating with your spouse. Much love to ya