Sunday, October 6, 2013


When I started this blog, the main purpose was to keep friends and family updated. It still is, but it has evolved. I decided that what I write here needs to edify, and it needs to have a purpose. The purpose of this post is to talk about support. 

I am truly thankful for the people in my life who have supported us during traumatic and tough times. I am thankful for encouraging words. I don't want to sound ungrateful, but I don't know of any other way to put this: the day-to-day can really take a toll too. It takes a great amount of planning to get the help I need with childcare or just to take a rest. While I was in California, I put thought into how I would make our daily life more efficient. How can I simplify things and also get more help?  The sad thing is, it takes money. It feels like the planets have to align. It feels like we have to scramble weeks or months in advance if we need to go somewhere. 

In my endeavor to find the help I need, things have gotten me down. I'm thankful we can afford to have a nanny, and we can afford to pay for housekeeping. Currently, we are working on getting a nursing service. But what if we were not able to do these things? There are many families with special needs children and adults who are struggling. My heart goes out to them.

I am thankful for Jeremy. I am thankful that he provides for our family, even though it requires travel and considerable time being away. I am thankful that he is a loving father and the best role model ever for our boys. I am thankful that he supports me emotionally. He is my other half. And also, he gets the planets aligned.

I am thankful for acts of kindness--really, those are the best! Especially regarding the day-to-day. I'm thankful for my dear friend Katie, with a special needs child of her own, who helps me prepare food for David's blends and offers to do my laundry and gets me out of the house when I need a break (you ROCK!). I am thankful for the friend who showed up unannounced with Whataburger on a particularly rough day when I had no idea how I was going to make it through lunch by myself with the boys. I am thankful for the friend who took Donnie to the zoo and an Easter egg hunt. I am thankful for everyone who took their time to come help us when we were doing patterning with David. I am thankful for the friend who sent her son to come help us when we were doing David's intensive program. All of you, you know who you are and I can't say thanks enough!

I am thankful for people who are not reluctant to learn to suction David's trach or learn to tube feed him. That stuff really helps. Those things let me know that someone gives a damn because they might be getting out of their comfort zone and they are really making an effort. David notices it too. I am thankful for people who show up to help on their own accord. 

It is pretty blatant that we need help and support when a hospital stay is involved, or something serious is going on. However, the isolation when things are just moving along really hurts. Maybe it is our culture. We have to work, and we have to make money, we have to be a million different places. We are separated from so many people we know by distance. And that is the way it is. Does it have to be this way? 

What if there were more people who got out of their comfort zone and volunteered to help families of special needs individuals? What if more people took a little extra time to do something helpful for others?  What if we reached out to each other more? What if we just slowed down? What if our whole society woke up one day and realized that the crazy pace we have gotten ourselves into is detrimental and did something to change it? It is not going to change overnight. But even the smallest act can start moving things in a healthy direction. 

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