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.

6 Years

This was supposed to be posted yesterday, May 12, but when I finally got to sit down at the computer, Blogger was down. So, here it is now.

Yesterday was May 12, which means yesterday was 6 years since our first diagnosis. I was trying to figure out how I felt all day, but I think my emotions escaped me. Overall, I did well. Time does do a certain amount of healing. One thing that tipped me over the edge was a potty incident that happened to Ian at school. The mere fact that Ian won't be at the same school, with Daddy to be there to help out, just drives me insane. I hate all the thoughts I let roll around in my mind. Maybe for once, I should think about all the good "what-ifs". Like, what if he does really well at the new school. What a concept.

Okay, so back to emotions. As I was jogging last night I pondered it all in my head. I began to think about Christ, because I KNOW without a doubt, He has a plan (unbeknownst to me of course) for all that happens, including rotten Fragile X. My kids may have Fragile X, but they're still my kids...wonderful, happy, adorable children. Then I began to think about the Bible verses tell us that we have not suffered anything that Jesus himself did not (He actually endured worse, in my opinion. I wanted to apply that to our situation. Jesus may not have suffered with Fragile X itself, but He did suffer loss. There's a huge sense of loss with the news of a diagnosis...whether it's Fragile X, Downs Syndrome, Autism, Emotional Disorder...whatever. Jesus DID suffer loss. He suffered loss through the death of His friends while on earth. He suffered loss through betrayal. Most of all He suffered loss by time separated from His Father while on the cross. This biggest loss He endured to the end, as is evidenced by His words, "...into Your hands I commit my spirit." He knew that ultimately His spirit belonged to His Father, and He knew the joy coming. And I know that ultimately, my kids belong to Him as well. He has most graciously 'loaned' them to Jim and me. He trusted us to take care of them and to 'train them in the way they should go'.

I cannot answer those who ask the why's of God. I've asked my own. I do believe I will have them answered in heaven...and am thankful that He, the Lord Jesus Christ, found me, loved me, and calls me His own. I could not make it through Fragile X without Him. For those who know Him as your Lord and your Savior and your Friend, don't ever let Him go! For those who say that He is responsible for all your woes in life, I am truly sad you feel that way and hope that your eyes too will one day be open to what it REALLY means to have Him as your Savior. It's a lot to take in, but well worth it. It's the only thing that makes this journey bearable for me.

So, my final thoughts....does any of this make it easier to live life? Does it make having Fragile X (or anything else) great? Absolutely not. But it does lead me through each day. And it reminds me to find the joy in all things....the kids' smiles, the "I love you's", each accomplishment, etc. Because Christ was willing and able to endure all He did, it makes me want to do my best to 'endure' to honor all He did for me.

Okay, thanks for sharing this day (a day late) with me. I still remember it like it was yesterday, and I will remember the other 2 as they come along too. It's good to have friends and bloggers to share it with!

The Sweetest Moments

For Jim and I, one of our biggest desires as parents is to know that our children are growing up seeing Jesus in us. We often wonder if that is the case...you know, at those moments where you just 'lose it'. Well, God has shown me otherwise in my children. Just today, I can list the sweetest moments.....watching Ian singing during worship time at church, hands raised, eyes closed, voice loud....Avery in her room singing "Jesus Loves Me" and "This Little Light of Mine"....Avery telling me her version of Noah and the Ark and Jonah and the Big Fish.

If it's such complete joy to my heart, I can only imagine what joy it must bring to their Father in heaven!!!!

Avery saying: Playing hide and seek, Avery's turn to count. Avery: "Okay, it's my turn to count. Hide someplace I can find you."

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.

Can I Start Today Over?

GRUMPY!!!!

ARG! I was supposed to be blogging on how happy I am because today is our 10 year anniversary. But nooooo, yuck had to get in the way. Instead I am super emotional (not even on my period). Jim and I got into a conversation about the schools and children, particularly the 'not typical' children. I really tried to keep my cool, but I blew it. So, you guys get to read it....remember, all raw unprocessed emotions.

So, I try to explain and bear my heart about how I feel about things like Ian getting pulled out of his class and put into a different class, about not really knowing what's going on this year, blah, blah, blah. I'm not doggin' the school. They have been very kind to us, and I feel very confident and fortunate, overall, about the care and attention Ian gets there. BUT, I also have a lot of fear. And when it hits, it hits. When I try to explain how I'm feeling to Jim, mostly I get how I need to understand how strapped the school is when it comes to our type of kids. No real programs for them, parents sueing, not enough funds for aides, etc. Well, that's all find and dandy, but what I really want to hear is, "Honey I know this is hard for you, I'm with you, and we'll do all we can for our children. Hang in there. " You know, something encouraging for ME (yep, all about me at this point). I just feel like he doesn't hear my heart. Like all his concern lies with the school. I DO know how difficult it is. I was a classroom teacher and I did have SN in my class. If anything, how would HE know! He does resource in-class support and pull-outs. He doesn't even have his own classroom full of kids all day.

So, I accused him of 'siding' with the teachers/principal and told him I would appreciate support for me because I'm sure not going to get it from anyone else. He's supposed to be there for me and the children. I'm not asking him to go out and start demanding things. I don't work that way. I'm asking him to say what I need to hear when my heart is scared and hurting. The only thing I could compare it to to help him understand (cause he still says things that lead me to believe he's not TRULY understanding what I'm trying to tell him) is a family situation. I asked him, "Okay, so what if everytime you struggled with the family member and felt beaten down, I decided to take their side and tell you that you need to understand what they're going through (which in this case would be a ridiculous statement). Would that make you feel like I was YOUR cheerleader and that I truly understood your heart? NO!"

I know he doesn't really know what to do with me when I get like this. So, I've pretty much vowed to keep it a blog thing and stop trying to get him to understand. This is just one of those times I feel completely alone. Like I'm the only one pushing to help Ian (which is not true). I just see sooooo much potential and I don't feel like he sees the same potential. Is that the hardness of the teacher these days?

I'm finding it hard to stop crying this morning. I hate to say things like, "This is my life, I have to deal with it." It is my life, but I fully expect to enjoy it and thank God for it. I was never promised an easy life and I'm okay with that. But sometimes I have a really hard time 'doing' the hard life. And I don't even have it as bad as some people I know. But I try not to compare lives. That's not what God intends for me to do. He wants me to do the life He's given me.

Okay, I think I'm done. I'm going to go spend some time with the One who really knows the details of my heart. I'm glad we're all walking this together. You help me not feel so alone. Once things process and I get to talk to Jim again (I've already emailed him to tell him I love him and I'm sorry), I'm sure I'll be put back together.

By the way, did I mention today is our 10 year anniversary!?

God is so Sweet

Sorry I haven't been up for a while. Trying to stay caught up with ya'll, but havin' a hard time. We've just been trying to keep the kiddos happy. It gets tougher as the summer goes on.....and it's soooooooo stinkin' hot outside (not to mention those nasty, nasty fire ants!) that finding things to do (inexpensively) gets hard after a while. Thank goodness for grandparents with a pool!

I just wanted to share a story of just how sweet Abba is to His children. The other day I was having a bit of a down day....worrying that Avery was going to grow up despising Ian because he can be so physically hurtful to her, especially when he's having a rougher day. Well, that night I went out for a run, and when I got back Avery was excited to tell me that she was going to sleep in Ian's room. I looked questionably at Jim, who told me it was her idea. Then I got to hear them having such a good time in the room before they fell asleep. That calmed my heart so much. I believe He was speaking to my heart through this and telling me that all will be okay. This is just a season and that Avery's love and understanding for Ian will grow with time. She does love him.

Thank you, Lord, with being so faithful and for letting my eyes be open to your sweetness!

4 Years Ago Today

Well, today, May 12, is the 4 year anniversary of our first diagnosis. Am I the only one who remembers their date? I don't mean to over-dramatize, but for me it was a date as much to remember as my miscarriage. Many of the same feelings and emotions. So, for my entry today I want to walk down a memory lane that took me closer to the Lord and showed me His great love for me and showed me that He really does care in the tough times. He cared so much, He gave me these great memories that culminate into His perfect and obvious orchestration of my precious Ian.

After Ian was born, but before his diagnosis, I was watching a Praise Baby video with him. As the music was going and the kids on the video were playing, there came a part with this boy in a wheelchair that had obvious special needs. It was the first time I had seen that part in the video, and I'll never forget the emotions that ran through me. I believe it was then that the Lord told me about Ian. (not audibly, but in my heart) Here's the part that took a while to figure out it was Ian. Ian had been born, but we had not yet had the diagnosis. I was pregnant with Avery as I watched the video. So, of course, I was convinced that it was Avery He was telling me about. It didn't take me long after our diagnosis for the video to hit my mind. It all clicked at that moment. The Lord was telling me about the specialness of Ian.

Ian is also the only child that I believe God gave us his name. Ian was never a name I would even have thought of. We had planned on naming him Brennan. I won't go into the long story of how I believe it was to be his name, but I remember it all happened as I was driving home. So, I immediately called Jim and asked him to look up the spiritual meaning in our name book. His name means "God is Gracious". I didn't argue. Jim and I both knew that was to be his name.

One more thing. I had chosen for my life verse(s) Jeremiah 29:11-13 early on in my Christian walk. At one point when I was so distraught and brokenhearted about the diagnosis, this part of the scripture reminded me that I'm not alone. "...plans to give you hope and a future." This wonderfully reminded me that as I seek Him and pray to Him, MY SON HAS A HOPE AND A FUTURE. It was then I realized that this part of scripture was not meant only for me to have as my life verse, but it was meant for me to have to turn to in that particular part of my life (and still today). God chose it for me to have it inbedded in my heart for just the right time.

Oops, I thought of something else. Again, I will shorten this story. My dad and I had never had what you'd call a great father/daughter relationship. It was just kinda 'there'. After Ian's diagnosis, something happened. See, my mom and dad had a son die at the age of 5. That son had Downs Syndrome. This was a place in our hearts where we could totally connect. It was not until we were talking about Ian one day that my dad opened up about things about my brother. He had NEVER talked about it to me before. Anyway, our relationship is so much different than it used to be. It's more like how its supposed to be.

So, I am one who believes that ALL things happen for a reason (even if I never know that reason this side of Heaven). And I believe that it's my role to bring all the glory to God that I can in all my circumstances. I fail miserably many times. But I do believe that Jim and I live out our life with our 3 Fragile X children well. (Again, not always, but overall) I want others to see a life of hope in me, not a life of pity. Afterall, Christ is all about hope.

Scrappin' 40!!!

Today is the day. I'm the big 4 - 0. Wanna hear an added funny? My mother-in-law's birthday is the same day! We always joke that Jim married me so that he could remember his mom's birthday. Anyway, she's great, so I adore having the same b-day as her. Back on track...Fourty doesn't feel too bad so far. Jim and I always wonder that as we get older how are we going to maintain energy for the kids, since they're so young. Well, we've been working on taking better care of ourselves. We try to eat better....doesn't always work when we're feelin' lazy. We've started jogging again which has done 2 things - given me more energy (although I could always use more), and helped me sleep better at night (I've never been a good sleeper during the night). The trick for me is.....can I keep it up? I can find ANY excuse not to go jog....too windy, too cold, too hot, too tired, blah, blah, blah. I'm actually starting to enjoy the jogging again though, which helps out with the motivation. Shoot me a "you can do it, Donna" comment every once in a while!


What am I doing for the big birthday you ask? Well, first Jim got me this GREAT camera (well, I think it's great). Suzanne, you'd be proud to see what this one is compared to my old one. Thing is, I'm still trying to figure out how to use it. I can do the point and shoot thing, but I want to know ALL the cool things I can do with it. Unfortunately, the way I read instruction manuals - hmmmm, well it might take me a while. Anyhoo, I'm enjoying it so far.

Last weekend, we had a family birthday gathering at our house. My mother-in-law and I decided on pizza and wings to keep things easy. Plus, the kids love pizza - makes it double easy. We hung around, goofed off, told stories, etc. Then my niece (almost 13) decided we should play hide and seek. So, we did. It was soooooo much fun. What better time in life to remember that we can still be kids!!??

Next, my best friend is putting together a girl's night for me tonight. I'm looking forward to that. Basically all Iknow is we're going out to eat, then to a friend's house for girl stuff. I'm excited to spend time with friends I don't get to spend too much time with these days.

Then, the culmination of it all.......scrapbook weekend! 5 other girlsfriends and I are going away to a scrapbooking cottage. We leave tonight and don't come back until....ready for this....SUNDAY EVENING!!! Wee-hooo! Avery will be 4 this summer and I just MIGHT get her 1 year book done. I plan on getting a 1 year book done for all 3 kids, but I don't plan on being a scrapbook mom. Who knows, maybe that'll change....maybe not. I enjoy cardmaking more. It's less taxing on my brain.

So, here's the deal. I'm normally a bit of a jokester when it comes to overnighting with friends. There's one friend in particular on this trip that I would LOVE to come up with something to 'get her'. So, if you have any ideas on good pranks, please offer them up!

To sum up the entry, I just want to praise my Father above for the great life He's planned for me. It's not always easy...okay, it's pretty much never easy...but it's still wonderful. While I can only see the parts of my life He's shown me thus far, I know He has a beautiful plan for making it all for His glory. That knowledge and hope keeps me going everyday. Thank you, Jesus!!!!