Saturday, June 14, 2008


I'm writing this entry after reading fragilemom's post. I started to leave a comment, but then I realized it was getting a little lengthy.
As much as I miss my babies being little, I wouldn't want to go back to that time period----I was somewhat of an emotional wreck. People would often say, "I don't know how you do it," etc., and in my mind, I'm thinking, 'You don't understand, I'm falling apart inside.' I think I did a good job with the boys, but I felt so alone in the Fragile X world. Part of that may have been my fault; there are two other families in this area who I know whose children have FX. Although there is one mom that I talk to occasionally because her son is just a couple years older than Kyle, the other family, who believe it or not, lives two streets up from us----not even a 1/4 of a mile---I've had very little contact with. Their 3 children, all affected, finished high school not too long ago.
Anyway, I think some close family members knew how much I was hurting (especially Mom, who got many phone calls with me crying), but I'm not sure if others knew. I used to pray as hard as I could to God to make my boys wake up the next morning and be "normal." Seems kind of silly now. I would sometimes crumple to the floor in tears. It was so painful---literally. I ended up developing IBS. They ran every test for the symptom of "extreme pain in my intestinal area, with 'interesting' bowel movements." When everything came back negative (thankfully), the diagnosis of IBS was given. Metamucil for a year and learning to relax did wonders. There was one spot in particular that hurt a lot. Now, when I start to stress too much, I sometimes can feel the pain starting. It's the signal to "stop worrying."
I honestly don't cry anymore about Matt and Kyle's diagnosis. Okay, well, actually, there was a mother's day commercial that made me tear up a little. It showed scenes of different people saying "mom." The last scene was of a young father with his wife in the hospital holding their new baby. The father was on the phone with his mother, and with pride and love in his voice, he said, "Mom." The thought that I won't be getting that phone call.....but I was over it almost as soon as the commercial ended (until the next time I saw it). That's not to say that in a few years, when the transition to adulthood hits us, emotions won't be stirred up again. I guess that right now, they're happy, they're funny, I don't worry all the time because of them having a driver's license (like I do with Chelsey), no drug worries, no girlfriend worries---basically, none of the usual teenage worries. Yes, I feel badly that they aren't involved in things such as high school sports like I was, and that they're missing out on the social aspect of being a teenager, but that's my problem. Also, dealing with making sure their educational needs are met can be a headache at times, but we're doing okay.
It's hard to even imagine the older boys being without FX. If I try hard enough, I probably could, but I don't let myself go there. Now with Evan, he's a different story. I only had a day and a half of painful crying after his diagnosis. It's more of a feeling of frustration with him because I have the thought of 'I just as easily could have had a child without the gene...50-50, right? WHY is this happening to another child!!??' But, I don't know what the future holds for him, so I try not to worry too much.
Okay, that's not to say that I don't have my down days---days where I feel like I wander around the house accomplishing absolutely nothing. But, I'm not sure I can blame my "feeling down" on my kids having Fragile X. If my kids weren't affected, would I still have those days? I don't know. I frequently remind myself that this is the only life I'm going to have here on earth; I really need to try to enjoy it. It works------most of the time.


fragilemom said...

Thanks so much for your entry. I understand about the "I don't know how you do it" statements. Sometimes I don't even know how I do it (never outside of the strength and grace of God). We still pray everyday that the Lord would choose one day to heal our children. Whether that be by medicine or a miracle. If we die and He doesn't choose to heal them, then we will love Him still and know that He is good. We always try to watch for how He can use our lives for His glory. Sometimes that's hard to see (like when I lost it with Avery last night). Okay this is getting long now and I'm too tired to blog it. Hee hee

One more thing. The swim pictures...did you ever get your boys into swim lessons? My kids LOVE the water as well, but I'm just not sure how to or if to do swim lessons with Ian. Any ideas?

You have beautiful children!

Kristiem10 said...

I love this post. I can so relate to it. There have been many times when well-meaning people say, "I don't know how you do it!" I would think, I just do it because I have to. They're my kids, you know?

Jen said...

Chesley had swim lessons, and I thought many times about signing the boys up when they were younger, but I was afraid that it would be too disruptive for other kids to put them into a class. I can’t imagine that they would have even come close to cooperating. I’ve also thought about private swim lessons that are offered at the Y, but, I don’t know, I never made it happen. Now that they are older, that might be something that is doable. We’ve always had some type of pool for them. When they were younger, it was a much smaller pool. We’ve never had one that was deeper than they are tall. Over the years, they’ve also had lessons through the school (at our high school), but those have been minimal. Both of them can swim, but I’m not sure if they can swim well enough to save their lives. I’m not even sure how to go about testing how well they would do in a situation where touching the bottom of the pool is not an option. The more I type, the better those private lessons at the Y are sounding!