I started writing the above at 4:30, but now a half an hour later, I'm convicted. The above was a gripe. A complaint about why I felt overwhelmed and drained. But as I was writing, I just felt very clearly in my heart that it was a waste. It was nothing more than griping and complaining. And yes, I think there is a place for sharing your heart and your struggles, I just felt that I was being overly negative.
Sure Alicia needs special help. Sure she has some potential challenges and she needs extra care. But there is also PLENTY to be thankful for.
In case, you can't read the above, most of it was about a certain disorder called, "Sensory Integration Disorder" or "Sensory Modulation Disorder." And while, yes, admittedly Alicia does have some of the symptoms of this disorder. I do not believe that complaining about them will do any good. I mean sure, she's always getting into everything, constantly emptying a whole box of toys just to look at everything, constantly crawling around, unable to sit still unless strapped down. She's often chewing clothing, playing with food, under-responsive to pain, chewing on toothbrush, oh, did I mention not sitting still, especially when we're tying to change her diaper, etc... But thing is she has many moments when she's completely focused, engaged and fully alert.
So do I choose to focus on the negative and frustrating things or do I choose to focus on the things I'm thankful for? Sure, I can't deny that perhaps Alicia needs some help to learn to organize some of her senses. However, I do NOT need to wallow. We get Alicia the help she needs. We help her as much as we can. That's a part of being a parent.
Do I feel, at times, that we got the short end of the stick? SURE. But truth is, there are plenty of kids who are FAR worse than Alicia. (Not that we should be comparing.) I mean can you imagine not being able to touch your child, or sing to her for fear that it would overstimulate her? Or how about your child purposefully running into things, or doing dangerous things because they are under-stimulated. Alicia doesn't do any of that.
Yes, she has certain things that are indicative that she has SID or SMD. But, they are mild.
But I will ask you to pray for this. Pray for Linda and I to have strength and keep focused on God. It's been said that, "God will never give us more than we can bare." Well, unfortunately, this is a gross misquote. The Bible doesn't say that. He says he won't allow us to be tempted beyond what we are capable of resisting. In fact, Paul in describing his experience in Asia says that "We were so utterly burdened beyond our strength that we despaired of life itself."
God does put us in positions where we can't handle it. But as Paul continues to say, "[It's so that it will] make us rely not on ourselves but on God who raises the dead."
Is it always easy to rely on God? NO! I am tired. I am not going to lie. I am drained and exhausted. BUT he has us in this position for a reason. He apparently loved Alicia enough to give her to Linda and I in this condition. He felt that we were the best parents to help her through this life. And I am honored. But MAN, do I feel completely overwhelmed and inadequate. And I can speak for Linda here, too. We both feel the same way.
However, as I have been reminded several times, just this week itself, my God is a big God. He is BIGGER than all of these struggles and trials. He is bigger than the storm. And as Jesus did in the boat, as it was being tossed about by the storm, I need to rest and know that he's GOT IT.
I may not be able to calm the storm, but HE CAN. And HE has promised that we will come through on the other side. So you know what, SID or SMD, and any other thing that may want to try to hinder my daughter? I'm going to tell my Daddy on you! Actually, no, I'm going to tell YOU about my Daddy.
He's the one who put the world in place. He's the one who knit Alicia fearfully and wonderfully in Linda's womb. He knows every fiber and cell in all of our bodies. The wind and the waves obey him. And HE PAID the ULTIMATE PRICE so that we can have life ABUNDANT! And this abundant life? It does not include you. So go on and git!
In the words of Gloria Gaynor, "Go on now go. Walk out the door. Just turn around now. Cause you're not welcome anymore. Weren't you the one who tried to hurt us with goodbye? Did you think we'd crumble? Did you think we'd lay down and die? Oh, no not us, we will survive. Oh, as long as we know how to love, we know we'll stay alive, we've got all our lives to live, we've got all our love to give, and we'll survive, we will survive (hey hey)!"
Thanks for sharing this! All of it, I appreciate your honesty and seeing how you processed all of this.
ReplyDeleteI forget if I've mentioned this, but Alex also has SPD (it's often called Sensory Processing Disorder, too. I know, it's confusing!). OT and feeding therapy helped a lot. I can help connect you with resources if you'd like.
Anyhow, I appreciate your perspective and totally agree with your thoughts on the whole "God doesn't give us more than we can handle" myth! Praying for you guys, that God will continue to manifest his strength in you and provide everything that you and Alicia need. Love you guys!
I wish we lived closer
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