Being a mom. It's a tough job.
And it gets even harder when you have to make all these decisions about therapies and treatments, surgeries and equipment.
Today, I feel overwhelmed. Of course I want what's best for Samantha. Don't we all want what's best for our children? And yet, with these little ones who struggle to move, eat, or even breathe on their own, I want so much more for her...or maybe less depending on how you look at it. I've never had such a deep desire for every day things that we take for granted. All those simple tasks. Simple skills. Simple stuff. I want that for Sammy. I've never dreamed about my kids being the next president or famous engineer. But I never dreamed that I'd so deeply desire them to move "normally" or eat on their own either.
I have felt on many occasions that there was so much potential within Samantha that just needed to be unlocked somehow. (Maybe I'm too focused on unlocking the wrong kind of potential ~ a thought that just occurred to me and that I'll have to think about more.) And so I research. I read. I search. I ask questions. I try to truly figure out what is best for Samantha. I mix and match what I think is working, or will work for her. Why? Because I really feel like those things will help her. Much of it is trial and error, and other times I feel divinely led.
And in all that we do for her, I still feel discouraged and sad at times. The past week has been hard for me. I've had difficulty keeping my emotions in as I've watched Samantha around other kids. In the past, I had compared her. I don't do that so much anymore because to me, Samantha is her own little person, and all considered, I'm really ok with that.
But during this week's time, we've played with cousins, friends, and strangers at the park. In all the situations, I've watched with joy as Callie played and had so much fun with them, while my heart broke watching Samantha wanting to play with them but couldn't. She kept going towards the kids, but they just pass her by. It's ok. I'm not saying that these kids should stop and play with her. I get that 100%. It just made me so sad to watch. And it made me even more sad when she'd cry because she wasn't playing with them. At first I didn't recognize it as that. But as soon as I relocated her to be near the other kids, she was happy.
Samantha has always loved people and being around others. Aside from any other desire I have for her, my deepest desire is that others will love and want to be around her too.
Here I am, doing all these therapies for her, feeling confused about what is best...liking bits and pieces of this, all of that, parts of something else and trying to figure out how to make them all mesh together and work for Samantha...and what tugs at my heart is ultimately how it will all play out in the end. Will all of this really help her achieve not just a more functional life, but a happy one as well.
Being Samantha's mom sometimes is not easy. And I guess it never will be until my heart is separated from hers. But, I'll take it. Forever.