It is hard, and it hurts

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I’ve heard from a lot of people in the last couple of days – thank you. As I’ve mentioned before, sometimes when I am weak, those who surround me bring me strength.

I just wanted to let everyone know – we are okay. Yesterday we were hurting, today we are hurting – but we are okay.

Our hurt stems from a place that can really only be described as helplessness. We are not hurting because Maddy is delayed in her language. Frankly, that is the least of our worries. We are hurting because Maddy’s delays are a sign of her challenges.

I know that often when we’re out and about, Maddy seems so typical. We have days at home where Maddy seems typical too. We have weeks, even, when she seems so typical.  During these moments, we often find ourselves wondering if she really isn’t delayed (well, until we’re reminded again by a new report).

We also have days and weeks that are tough. They are tough for us, but first and foremost, they are tough for Maddy. It is hard watching her struggle with transitions – something that happens over and over again every single day. It is hard watching her meltdown because she stepped on a small piece of onion peel in the kitchen and can’t manage to stay calm enough to take it off of her foot herself. It is hard watching her completely meltdown and not be able to take part in what seem like simple activities (say, a boat ride, or dressing up for Halloween). It is hard watching her toss and turn all night, not sleeping for more than half an hour at a time.  It is hard watching her vomit, simply from trying some ground beef. It is hard seeing how she struggles to interact with kids around her. It is hard watching her get worked up every single time we need to put a coat on her. It is hard listening to her scream, and watching her thrash on the floor, not wanting any form of comfort from us. It is just hard.

What Maddy’s delays signal to us, is that yes, indeed, she is having a hard time. That hurts. It hurts that the things she struggles with, we are powerless to help. We can try our best, offer her all of the therapy that money can buy, but her challenges are still there. They exist in an unreachable space.

Our end goal is not to eliminate her challenges (in my dream world, maybe). Our end goal is to learn techniques that allow Maddy to cope with these challenges. I know we will get there. I have all of the faith in the world that one day we will look back on this and see how far we’ve come. I see us proudly watching Maddy reach her dreams – dreams we don’t even know exist for her.

I know that these days are ahead of us. But, even though I believe this is our future, I still need to face today, tomorrow, and next week. I need to face the difficulty of our present, and that hurts.

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