Tuesday, January 29, 2008

Fragile X Reality

Well, I recently got some news that my 18 year old niece (I'll name her Renee) is planning on moving in with her boyfriend. I don't mean to offend anyone out there, but this is not something I believe is right to do. Now, let me also say that I have not had an angel of a life by any means. Luckily, the Lord came and saved me and I have had a personal relationship with Him as my Lord and Savior since 1996. So, just to set the record straight, although I do not agree with what she is planning, I am NOT judging her. I love her all the same.

Okay, now I can go on. Basically I want to just get off my chest that I am sooooo worried about her getting pregnant. Bit of background - my older sister (40) got tested for Fragile X after our 1st diagnosis. She is a carrier, but her daughter is not. My oldest sister (51 and mother of Renee) has not been tested and doesn't plan on getting tested because she won't be having anymore kids. She has 2 kids - my 25 year old nephew and Renee - who also have not been tested. My nephew and I have a very close relationship and he knows exactly how I feel about the importance of him getting tested before he thinks about marrying someone. He would probably do it just to get me off his back! :)

Renee is pretty immature and easily influenced, as you might figure for an 18 year old girl in today's world. I think she also has the mentality of most 18 year olds....you know, the one that says, "Oh, it won't happen to me" or "You're just exaggerating what could happen". Thus, she would have no intention of getting tested, at least not now.

My problem is that I just don't think the rest of my family (who does not live in the same state as me and does not see my life day after day) sees the reality and severity of what could happen. I can understand this from their point of view, not having to actually LIVE with the full mutation Fragile X. But being the one living the life with my awesome children, I see all the reality. While I'm sure they agree that the pre-marital sex is not what God intended, they are more focusing on "get to the doctor and get on birth control." Hate to be the bearer of bad news, but that doesn't fix the problem and there are no guarantees with that. There's always the chance of the pill not working, forgetting to take it, etc. I would rather her see a different side of this. Problem is, we don't really have a close relationship. It's not a bad one, just not close.

Maybe I'm too much into trying to 'fix it' or protecting her. But is that really a bad thing in this circumstance?

Monday, January 28, 2008

To Go or Not to Go

My husband (I'll name him Henry) and I had a difficult 'communication' time this past weekend. We're better now that we had a talk and understand where some miscommunication happened. I want to say that he probably needs some time alone and so I was going to take the 3 kids to visit family about 3 hours away in a couple of weekends. I think I just try to figure him out and then try to figure out what he needs, then I try to fix it. Things like, I try to farm out the kids if I can when I have a night out, or I try to set him up with time with friends, etc. Maybe he doesn't really want me to be doing these things. He can be difficult to read because he's so laid back. But after these years of 3 fragile x kids, you tend to change a bit. Not necessarily for better or worse....just change. You almost have to just to survive.

I don't do a very good job at remembering that men and women deal with things differently. What I might need is not what he might need. I should just stop my 'mothering' on him and let him decide what he needs and let him do it. I just get sad when I see him down or 'not quite right'. So, being a woman, I want to make it better. Problem is, I don't always make it better.

We have a hard time sometimes relaying our feelings to each other because a lot of the time we don't even understand what we're feeling ourselves. Is it tired? Is is stress? Is it sadness? Is it frustration? On and on and on. The only way we know how to answer is 'YES' to all of the above.

We have a GREAT support system. While we are very grateful and realize after talking to others with fragile x families that we are very blessed, it's sometimes hard to call on them without feeling like we've been beat. Most of the time we can get past this, but I hate feeling like I can't handle life without so many 'breaks' in between. I know, I know, I should just be grateful and take the opportunities. We are and we do, but it can get hard to. Sometimes when I tell my little girl (I'll name her Grace) that someone is coming over, she'll say, "Mama stay here?" I hate that she thinks I'm going to leave everyime someone comes over. Overall, she handles it well and doesn't seem so afraid when we leave (we talk a lot about "mama always comes back cuz mama loves her babies"). But still.....

I'm also about to start my period. I tend to think and analyze more than I should doing these times. :)

Happier notes next time.

Monday, January 21, 2008


Okay, I've been repeating over and over and over "m a m a" to our youngest. He either just happens to be doing it, or he's actually repeating. Either way, I can think what I want and I choose to think he's actually repeating and saying "mama". :)

Little lady has been tee-teeing on the potty more often the last few days, and has been VERY proud it!

I think we may have decided on a church home. The kids have done very well there, we feel just as welcome as when we went 8 years ago, and the worship and messages are great. Sounds like a great combo. We'll see.

Our nights have been rough lately still. Not horrible, just not a full night's sleep. That takes a toll on us after awhile.

My mom came to visit this past week from Oklahoma. I love it when she comes. I asked her a strange question this time. I asked her if she ever cried for me. She said yes. I think I asked because I don't seem to be able to cry anymore, even when I really want to. So, maybe it was just nice to know that someone else could do it for me. Only I don't want her doing it because she feels sorry for me. I don't think that's the case, but of course I sometimes wonder anyway. I know she's very proud of me and how my husband and I handle the kids. Luckily, I don't "lose it" too often when she's here. Wouldn't want her to worry anymore than she does.

Friday, January 18, 2008

Moving Right Along

My 4 year old is starting to use his words more...although Mom and Dad, and sometimes younger sister, are the only ones that can understand him sometimes :). I think younger sister (2), is really motivating him. He is still quite aggressive toward her, but overall they really love each other. I just pray each day that she will learn grace and patience with him and that they will truly have a great relationship.

Our youngest (8 1/2 months) is still so happy. He has 2 teeth now. ECI comes to visit him twice a month. He has physical therapy and speech for oral motor. I can really see his low muscle tone, as he still cannot sit up on his own and is quite wobbly even when I'm helping him out. He also does not make an effort to crawl or scoot or anything like that. So, we just work day by day.

Our little lady is working on potty training. I'm hoping once she learns, our oldest will then be more motivated to try. Again we just go day by day, but she is really wanting to do it more. I think she just likes the M&M reward!

Mommy and Daddy are doing well despite our lack of a full night's sleep. Our relationship is great and we work well together as a team. Life is tiring to say the least. I can honestly say we only get our strength from our Lord. He manages in His goodness to sustain us through each day. We struggle with wanting to get all the kids out together (even just for dinner), and not wanting to deal with the work it takes and the looks we get when Ian just gets so loud. Will we ever be able to feel comfortable with it all? Maybe not. Maybe we just do it just to do it. Hmmm.

Even though we have 3 Fragile X'ers, I still sometimes mourn that we will not have anymore children. Crazy, I know. Must just be a woman thing. Being almost 39 years old, you'd think that wouldn't cross my mind anymore after 3. Am I just crazy?

Well, children call me back to duty now.

Wednesday, January 9, 2008

I'm Back

Well, it's been a long time since I first (and last) wrote. I'm hoping to do better at keeping it updated. 2008 started with quite a bang for us. We no longer have our church home, which was a HUGE source of support for us. However, we do still have family and some really great friends who encourage us and are committed to making sure my husband and I get 'recouping' time together.

We are now on our search for a new church home...one where we know we will grow in intimacy with the Lord and where we will always be encouraged to keep looking to the God of Heaven in the midst of our circumstances. It is also important for us for it to have a Special Needs class for our oldest son, (4). He is just not able to be in a regular class right now. Our little lady is doing great. She is currently going to a preschool 2 days a week. It has been soooo good for her and she really enjoys it. So, she can be in a regular 2 year old class. Baby brother (8 mths) is doing ST and PT with ECI. Except for some low muscle tone, he is just a happy little baby. So, he can go in the nursery. We also want to be able to serve in a ministry serving the needs of special needs. We think we have found the church we will join, but will continue to pray a little longer and talk to some folks we know who started Texas Special Kids.

That's it for now.