I get asked periodically if I have updated the blog. I sheepishly answer no. I can use the excuse I am really busy. But everyone is really busy. I will admit it certainly isn't the first thing on my to do list if I have time and might not make the top 10. I do think each time something happens: news from a doctor, a sickness, a decision; I think "I need to write that on the blog as an update". And as you can see...it hasn't been happening.
So I started to think about why. As those closest to me know, I am a relatively private person. Whenever I used to take those personality tests back in school, I actually was found to be an introvert. Amazing I know since I can talk with the best of them and probably could win a talking content (as long as none of my mom's side of the family, the Wahrmund's were included, not the least of which my wonderful brother and mother). So maybe that is why I don't blog often...I don't feel as comfortable telling the information to everyone and anyone.
Yet so many people know about the kids and their health issues. I post on facebook periodically. I answer nearly every question people ask me in person regarding the kids and how they are doing. I admit that I don't talk or write too much about how I feel about this all or how I am doing....but that is just me. I did come up with a few reasons that I thought I would write about. One is pretty straight forwarde but the other gets into my feelings a bit more. So it may be too touchy feely for some. ;) However, an acquaintance from church has been blogging about her and her husband's journey as he undergoes treatment for a cancerous brain tumor with little chance at a "cure". So I thought maybe it was time for me to give blogging a try again. Here goes....
The easiest explanation is that I cannot blog easily on my cell phone. That is how I communicate with many people now: texting, email and my friends call me on it. I read the internet on it, keep up with a few sites, and get news and weather on it. And I'm rarely at my house. Between nine (down from ten before the school year started) therapies, two girls in dance on different days, a trial with swim team, volunteering in numerous settings and ways I am just not at home. And when I am, I am playing with kids or trying to figure out how to keep my house running. Typing a blog on my touch screen just isn't as easy for me as the keyboard of my laptop. So you guys miss out on the info. Maybe over time I will learn to use my touch screen, and then you all may be sorry.....you may hear from me more than you ever wished to. ;)
The other reason dips more into the feelings realm. I have heard many people find blogging to be an emotional release. A way to find support and help emotionally. Sometimes that is the case for me. But often I see it as another "chore", another thing I have to do in a day related to my children's condition. Most people look at my kids and don't see any "special needs". They seem healthy, their cognition ("brains" if you will) are intact and they can get around. They don't have wheelchairs, braces or any outwardly obvious signs that they have a condition.
But I do. Everyday. Hooking Ryan up to his feeding pump four times a day. Begging Ryan to eat, trying to find something, anything that he will put in his mouth and swallow. The trips to therapy three-plus days a week. The frequent doctor's appointments. The weight checks. The fact I almost always run into someone from the Children's Hospital who knows me by name (or the kids). Watching Claire as she desperately tries to keep up with kids her own age as they run and run. Seeing Claire sit down in the middle of a Children's Choir concert at three in the afternoon because she is tired. The never ending sicknesses that winter brings. Seeing Claire's writing/tracing and looking at what hypotonia means. Wondering if we will be allowed in a private school because she is "accident prone" and tires easily. Finding a school that can best meet all their needs. Watching my daughter build a hospital out of blocks. Or play doctor. Or scream hysterically as we get into the car to go to a doctor. Watching her lying on the cement, holding her blood pouring out of her ear. Having her look up at me and ask why she is tired all the time, everyday. And the constant wondering if whatever they have will keep them from a long and healthy life. Will take them to "visit God and Jesus" earlier than I want, earlier than they should all because I missed something...didn't find the right doctor, test or treatment for them.
So often I don't want to write because then I have to use still more time to be reminded of all of those things and more. I live and breath "this condition" every day. It has come to effect nearly every aspect of my life. It shouldn't and won't always be this way. In fact, this last four months we have taken some steps back. It has calmed down. And we will continue to have that be the case. I am determined the kids will have as "normal" a life as possible, as much as the therapists feel they can handle and is safe. The kids therapists love my children as their own. Both Claire and Ryan are extremely attached to them and consider them part of their "extended family". They are included in many life events such as birthday parties and are always thought of when something happens. (Claire loves to have pictures sent via text to Ms. Jenny and Ms. Kate).
In this vein, Claire and Ryan will start a new school the Monday following Thanksgiving. This is a developmental preschool that is connected to the company that provides their current therapy. They will continue their therapies with the same therapists and will attend preschool classes the rest of the time. These classes are relatively small, 10-12 kids for at least 2 teachers, and they provide child-targeted instruction. Ryan will also be able to get his tube feedings there. The center is open from 7am-6pm M-F. Having therapy in the same facility will free up time for me as I will no longer have to go back and forth three or more times a week. Should all proceed as planned, the hope is that I can return to work at some point in the future when the time is right. This will also help Claire and Ryan to work to reach their full potential and be in an environment tailored to them. We can't wait!
I do have some "medical update" to post following this so I will end. Maybe that is an additional problem with me and blogging...I just am too long winded. Maybe a touch screen will help with that.....only time will tell.
Thanks for keeping up with us!! Off to be a mom for a bit. Hopefully I will make it back to update the medical side of things.
