A Bit of Wisdom Please

"But the wisdom from above is first pure, then peaceable, gentle, reasonable, full of mercy and good fruits, unwavering, without hypocrisy.  And the seed whose fruit is rightousness is sown in peace by those who make peace." 

James 3:17, 18

As another school year begins, so does another year of unknowns.  Three fragile X kids in three different schools.  A daughter who is great at comprehension struggles so very hard at math and is so very timid.  Youngest son who is over the charts on cuteness but struggles at obeying and rules and potty training (typical though) and impulsivity and basically anything that would create order.  Oldest son, who has been a people pleaser is now deciding to hang on the fence of rebellion....going just so far enough to get a reaction (I think he prefers negative).  This same son who generally seems to regret his actions, showing sadness & sorrow, impulsively scratches his brother and pulls his sister's hair, or messes up what sister has worked so hard on.  Three children whom I love and adore dearly and could not imagine my life without.

My dilemma?

In the school and out of the school, I MUST HAVE THE ABILITY TO EXERCISE WISDOM.  Wisdom within the fragile X realm (and many others) means overlooking some things the parent of typical kids would not.  It also means having zero tolerance for things the parent of typical kid would say "aww, cut him some slack".  Wisdom... knowing how much they can handle before it's time to take a break.  Wisdom... trying to learn about why they respond the way they do in certain circumstances, as well as knowing when I don't have to know why.  Wisdom...knowing when not to take them to a particular function because it will cause more anxiety than joy for them.  Wisdom...when to know when/how to confront a teacher or situation and when to be patient.

Wisdom...to know how to bless my daughter who, because she is not as negatively affected as the boys, takes on greater responsibilities.  Wisdom...to know how to explain why she has to do this or not but the boys do not.  Wisdom...to know how to get Ian to keep on reading this or that book, even through the whining and fits.  Wisdom...to know how to get him to eat using utensils.  Wisdom...to know how to get Benjamin to understand authority at home and at school.  Wisdom...to know how to roll with the punches (which I've gotten quite good at) and how to have fun with my children....even when that means pulling out the paints knowing full well it will end up on places that will just not wash off.  It means having fun with them sloshing around in the rain (which I like to do anyway).  Wisdom...how to balance everything and everyone in my family while at the same time making time for me.  Wisdom...making sure my husband and I get date nights and times to really connect and see how the other is doing in our mahem.  Wisdom....to not get lazy in this.  Wisdom.... even so much more.

 

But the most important and crucial of all is seeking the wisdom that comes from above.  All the wisdom needed listed above and all the others not even mentioned on my list can only be truly accomplished when I seek out and ask my God for that wisdom. He has given me the signs to look for to discern if I am accepting His wisdom in my life.  Read the words - I do - everytime I ask for wisdom in a situation and I try my best to be sure it encompasses these words when I follow through.....pure, peaceable, gentle, reasonable, full of mercy and good fruits, unwavering, without hypocrisy.  If I seek out seed whose fruit is rightousness, it will be sown in peace, and I will have become a peacemaker.  What a wonderful thought!

The first day I decided to use this verse with schooling my children and with my family, I prayed over it before I started to do some school with Avery.  The result?  Well, ummm, I wish I could say it was incredible.  Instead, I was an incredible failure!  We both ended up in tears....over math!  Ugh!  But with every yuck in life comes a beautiful life lesson or two if we are willing to look for them.

1.  I always try to make it a point to model humility with my children.  I apologize whenever the time calls for it.  In this case, it screamed for it.  So I did.   She, in turn (with a little help from me), apologized for her part as well.  It was a very sweet time.

2.  God led me to another verse from James:  "He gives a greater grace." (James 4:6)   My God gives greater grace.  Grace greater.  Grace is His ability to enable me to be who He has called me to be and to do what He has called me to do.

So, basically when I fail....that's okay.  I go back to Him who gives greater grace.  I don't quit.

7 Years Ago

As the day comes to a close, I reflect once more of this date 7 years ago...the day my life and dreams changed forever....our first (of 3) diagnosis of fully mutated fragile x syndrome.  To this date, I still remember it as if it were yesterday.  I remember my mom in town for Mother's Day, sitting on the couch next to me when I received the phone call.  I remember the confusion, the fear, the anger, the sadness, the unknown.

Now seven years and 2 more diagnoses (sp?) later, I still fight the same thoughts, but only occasionally now.  Our pastor did a teaching last week about the grace of God that was fabulous.  He defined the term on a whole new and more mature level than I had ever heard before.  "Grace is God's empowering presence enabling you to be what God has created you to be and to do what he has created you to do."  I would say this fits perfectly with how I have survived the last 7 years....His empowering presence enabling me.

I hate fragile x.  There, I said it.  But I love, love, love my children; every tiny ounce of them!  While 'typical' families celebrate grand accomplishments because the 'little' things just happen naturally, I have learned to celebrate every accomplishment, knowing that nothing they do is to be taken for granted.  I have learned that I don't have to stop and give excuses to every person that looks at me if Benjamin screams in the store or Ian decides he's going to kiss a trash can (yes, actually happened).  Do I feel a bit uncomfortable?  Ummm, sure.  But I get over it.  And I don't mean to sound rude, but if I can get over it, so can those people looking that know nothing about my child.  I have learned not to 'judge' other parents when I see their child 'misbehaving' in public.  To be totally honest, it kinda makes me feel more normal. :)  I also have a lot more compassion for them, and if they see me looking, I just smile to let them know it's okay.  There's so much more I've learned as well.

There are still so many unknowns, but I try to take them one day at a time.  Some days I even make it through without thinking about one of those unknowns.  I try to remember the 'knowns'.  I know my children were meant for me.  I know I was meant for my children.  I know I love my children.  I know they love me.  Seriously, what more could I ask for?  Just look at those beautiful, happy children at the top of my page!

OMG!

That's about all I can say these days. Well, maybe I have a few more words, but you don't really want to hear them right now.

After catching up on some of ya'lls blogs (finally), I've realized that I'm not the only one extra tired these days. And I don't mean sleepy type tired. Everything about my life is exhausting me to the point of crying...which I have done. From vomit trying to brush teeth, to really SICK AND TIRED of changing pull-ups, particularly poopy ones, to books being ruined, to markers being ruined, to being woken up at night, to boogery noses, etc., etc.

Here's the real deal...we really do have a lot of sweet days. And when my kids are sweet, they are really sweet. Take for example, the wonderful kisses (for no reason) that Benjamin just came to give me! My real struggle has been that I have not been holding on to God's grace and strength. And because days have been so crazy over the last month or more, I have not stayed in touch with the ones who really challenge me to seek the only One who can get me through this life. I've lost a lot of the 'challenge' (you know, the ones who ask the hard questions and don't just 'fluff' the conversations) in many of those friends, but it only takes one. (BTW, I just got a kiss from Ian too.) So, as I prayed the other day, I will praise Him for all His good gifts (for He knows exactly how good they are). Even when my days are tough, He will get my praise.

Now, don't get me wrong. I am NOT unhappy with my life. Yes, it does get hard to watch 'normal' families, but that doesn't mean I'm unhappy with my own life.

Okay, the next entry will catch up on all the Christmas joys, like listening to Avery tell me all about God's forgiveness!

Avery saying: Avery: "Mommy, how do you spell 'drum'?" Mommy: "You mean as in the instrument?" Avery: "No, I mean as in the word."

My Boy Can Read!

Oh yes, I am extremely excited. I think I scared the pants off Ian. I think I told ya'll about the Bob Books. If not, they're great, in my opinion. I've been using them to help start Avery into reading. They keep with pretty much the same words within a book, keep a lot of them into the next book while adding a new word or two and using a new word family.

Well, Ian has this thing they do from school. If he reads 10 books in the month, he gets a pizza coupon....could it get any better for him! He's made it one month, but I've had trouble getting any books on there the last couple of months. Obviously, I don't wait until he can read the book fluently by himself (he might be in 3rd grade by then :) ). So, I consider his abilities when deciding when to write the book down as "read". Well, I decided to try a Bob Book since it's a great beginner. I pointed to the words, and here's what HE read, totally on his own. "Dot had a cat." Next page: "Cat had a hat." And he continued to read the rest of the pages (about 6). He got caught up on 'sad' (called it 'said') and 'on' (called it 'no'). It was very obvious after watching him read the book that he has been learning the site words at school very well.

After he read the first page, I screamed...yes, screamed. He looked at me like I was nuts. We high fived over and over and I told him how proud I was of him over and over. He looked like a very proud peacock. After I showed Jim what he could do (he usually thinks I exaggerate until he sees it himself), he told his teacher and the head of the program. They wanted me to send the book to school so he could read it there too.

Then, yesterday, Ian's aid told Jim something he did. They had 2 sets of cards. One set had shape words on it (trapezoid, rhombus, circle, triangle, square, rectangle). The other set had the shapes on them. He was to match the shape names with the correct shape. He read each shape name and matched it to it's correct shape. He did call the rhombus a diamond...that's because it looked like one the way they drew it. :)

I was thinking a lot about Ian last night on my run. And about the rest of you. I was thinking about how much rejoicing we've all had and great it has been to share it all. I was thinking about how the Lord really uses the little things in life to remind us how big He is. I don't know where the rest of you stand, but I know without a doubt that I would definitely not be seeing things the same way if it were not for my Jesus. Do I wish sometimes ( a lot) that I had 'typical' kiddos? Sure. I'd be lying if I said otherwise. But would I ever change my kids or switch them out? NO WAY! Life will always have it's tough rides (whether I had FX kids or not). So why not learn to watch for these wonderful moments and let them outweigh the heavy ones! Something I have to continue learning everyday. But I sure feel like I'm further ahead than I was on diagnosis day!

What We Believe

A few weeks ago, Kristie at Life with My X Men posted an entry - religious training and fragile x. I was going to comment on it, but found my comment to be too long and decided to make an entry out of it. My goal is not to offend anyone, but if I do I cannot apologize for it. This is what we believe in our family. And, let me add, I am in no way saying we have all this figured out or that we do it right all the time, but we sure give it a good hidy-ho effort every day. We also are always ready to receive wise guidance from others who believe the same as we do about our Christian doctrines, faith and beliefs as they relate to everyday life.

In our opinion, raising our children to love and have a relationship with Jesus Christ is both the most wonderful and frightening privilege given to us. How on earth do we pass this along to our children.....who currently (1) are very young and (2) do not have the ability to understand things in the same way as typical kids? Well, we figure we do it in exactly the same way we would if they were 'typical'! We lead by example. No, we don't always manage to display the example we would like, but we sure try. When we fail (like totally, totally lose our cool with them, or spank out of anger, etc), we try to chalk it up to what NOT to do instead of beat ourselves up night and day over it. God's grace IS sufficient to gird us up for the next challenge, which is usually just right around the corner. :)

My biggest fears when we got our first diagnosis, and each one after, was "Will they learn to love, and will they know our love and the love of Christ who formed them? Will they ever be able to understand what it means to have a saving relationship with Him?" I cried lots over this. I sometimes still do. But God is so good. He shows me in ways only He could that He is really in charge of it all. I do my part, He promises to do His. So, I cherish the times I watch my kids in front of a Mercy Me DVD dancing up a storm, arms raised, and voices singing and saying things like God is good. It warms my heart when Avery does it, but it runs even deeper when Ian does it. He'll raise his hands and close his eyes. It's just beautiful! And it warms my heart that they enjoy going to Sunday school each week.

With Ian, because of some his difficulties in school, every morning we try to talk about how God made his hands to be nice and his mouth to say nice words. When we see him hit, push, pull hair or say 'stupid', we remind him of these. And we ask him, "Ian what did God make your hands for? Ian, what did God make your mouth for?" That way when he answers, we know he was paying attention. :) Just tonight he was imitating me as I got down on my knees, palms lifted, singing. OMG! And just imagine...if it's that adorable and heart-warming to me, how much more is it to the Lord's!!!! So, although I know that he does not fully understand everything, I do believe with all my heart he will...in the way he can. I believe the Lord really, really wants to be sure I know that

Avery doesn't understand everything yet either, which is fully understandable at her age. But, she is further along in understanding than Ian. She asks questions, likes to pray, and thanks God for EVERYTHING when she prays. She also tells Ian when he's done something that may have made God's heart sad. We've started praying together for her classmates that weren't at school that day because they were sick. One of them was on a trip so Avery wanted to pray that she would be safe. She once made a comment like "God is not real", which brings up really good conversation. Of course it's hard for her to understand when she can't see Him. It's hard for most of us a lot of the time, and she's only 4. We let her know He is real and lives in her heart. Yeah, try to get a 4 year old to understand that. But right now that's one thing we'll keep saying, even though she doesn't understand it yet.

We make sure we don't 'shove' things down their throats or tell them a bunch of heavy stuff they could not understand at this point, like why people die, why bad things happen, how Jesus could actually take care of all of our sins, how He could be everywhere at once, knows all things, etc. Instead we just set the best example we can, and hopefully they will continue on the path they are and will ask more questions as they get older. Then we will know they will be ready to know more. Right now, we let them know what pleases God, what breaks His heart, and that Jesus loves them soooooo much. We believe in 'teachable moments' and look for them all we can.

So, yes, I am a firm believer that fragile x'ers, and all other SN kiddos can know and love Christ and learn what it means to walk with Him. It may or may not look different, but God speaks to their hearts just as much as ours. I will never let anyone lead be to believe otherwise.