Our first official family vacation

Two posts in two days! Can you believe it? I wanted to post about our recent vacation to San Antonio. This was our very first family vacation that wasn't to see our family in Alabama. Not that you guys don't count, it's just that this was the first time just the four of us went somewhere for fun. Not that you guys aren't fun. Sheesh! Anyway...

Last December, at our church's annual Family Christmas service, our family (who had only been at the church for six months) was given an amazing gift. Well, two gifts actually. One was the Will Saunders Day at Wild River Country, which I posted about this summer. The other was an all-expense paid trip to San Antonio to go to Morgan's Wonderland. It is the world's first ultra-accessible family fun park - an "amusement park" for people with special needs and their families. Their sign reads "Morgan's Wonderland - Where Everyone Can Play." And it is true. We had the most incredible time over that four day trip. We never would have been able to afford it on our own and are so grateful for the generosity of our amazing church family.

We drove (10 hours, yuck!) down to San Antonio on Thursday. Friday we ate breakfast at Taco Taco Cafe, which was featured on Diners, Drive-Ins, and Dives and voted best taco in America by Bon Appetit magazine - it was amazing! Then we went to the zoo and ate at another local dive, Chris Madrid's, for lunch. Friday evening we went to the Riverwalk to explore and eat dinner. Saturday we spent six straight hours playing at Morgan's Wonderland. I'm pretty sure the kids could have made it another two hours (at which time the park would be closing and we would have been forced to leave), but Jeremiah and I are apparently getting old and were so stinkin' tired we couldn't see straight! Saturday night we went to dinner at La Hacienda de los Barrios, which was wonderful. They have a playground and some kids were ugly to Will. Cate came back to our table almost in tears and finally told us that some kids were ugly to her "brudder" and it made her sad :-( She is the best sister in the whole world! Anyway, after our delicious supper, we returned to the hotel for Jeremiah to watch the LSU/Bama game. I fell asleep only to wake up right at the end of the game to a very disappointed husband. We traveled back to North Little Rock on Sunday after a fun-filled weekend.

I know I've said it a million times, but thank you First Assembly NLR!!!!! You made a dream come true for our family. We feel so blessed to be a part of such a generous and mission-minded church family. We love you!

Now, for the best part...pictures!

Grace

It has been quite a while since I last posted, and I apologize for that. I have, however, learned something during that time that I would like to share with you all...
I started a Bible study called "Grace for the Pace" by Beth Jones a few weeks ago with some of the girls from my Sunday school class. The study is to teach us how to live our busy, stressful lives with God's grace - how to have standing and serving grace. My first thought was I'm too busy to do that. Ironic, isn't it? Well, I decided to make time to do this, and I am so glad I have. We meet on Saturday mornings at 7:00, so it means I have to set my alarm and get up early every single day of the week, but it has been worth it so far.

Grace is something I certainly need more of. I need it from Him, and I need to give it to others. When you think about grace, most people only think about God's saving grace, that He showed sinners underserved kindness and mercy by sending his son to save them. And that certainly is an extremely important type of grace, but it isn't the only grace God can give us if we let Him. God can give us grace for the pace. This is something I think every busy, stressed out, scheduled to the max, working full-time, taking care of your kids, husband, and house kind of girl needs to know. I could write a lot of stuff, but I think Beth Jones puts it best in her book, so I'm going to quote her words instead...

"Grace for the pace is when God Almighty gives us a supernatural deposit or endowment of inner strength, giftings, ability, know-how, understanding, knowledge, and favor which first leads us to salvation, and which helps us to stand in victory and serve God. God's grace helps us with the pace - the stressed and overloaded lives we often face. We need God's grace for the pace! Grace is His free gift to man. It's the most amazing thing, that God Almighty would impart his grace to us and that grace would supernaturally help us succeed in whatever we face! When we truly receive God's grace for the pace, we receive the ability to function at the pace required of us. Living in the grace is to receive, recognize and identify our God-given gifts and bents, and connect them with the God-given season and callings in our lives. Like a glove and hand, God's grace and our life work together in a supernatural rhythm. In practical terms, grace for the pace is when God graces us to be a Christian, a wife, a husband, a mom, a dad, a friend, a business person, an entrepreneur, an athlete, a builder, engineer, doctor, lawyer, homemaker, manager, chef, clerk, pastor, evangelist, coach, volunteer, banker, baker, candelstick maker, and the list goes on. If you have grace...life is like a well-greased machine. There's a flow. There's a supernatural ease. You know when to say yes and when to say no. Whatever you need to know, be or do - God wants to grace you in such a way that you have His supernatural ability in that area. Grace is huge! Can you see how wonderful God's grace is? 
The other side of the coin is this: without grace you will eventually burn out and resent the very things you once loved. Without grace, you'll do what you have to do, but eventually you'll start to feel like a "flat-liner" in life and you will experience a sense of detachment. Without grace you function, but there's no unction. You survive, but you do not thrive. You may be skilled but you are not fulfilled. You live and die but never know why. Get the picture? Without God's grace for the pace, in the end there will be sorrow and regret."


I have told you these things so that in me, you may have peace. In this world, you WILL have trouble. But take heart! I have overcome the world.  - John 16:33

God tells us we will face stress and overload in our lives. But, He also promises that if we remain in Him, we will overcome. That is what His grace for the pace is all about.

I am still learning how to receive His grace, and how to show it to others. But, I feel like I'm getting better at it each day. I am learning when to say yes, and when to say no, which has been something that is very hard for me. I am learning to depend on Him and His grace to get through each day. That is all I can ask. We aren't even promised tomorrow, right?  So, live each day by His grace, and not only will you survive, you will succeed!

Just a few pictures from the summer. Enjoy my beautiful babies! (Sorry some are blurry. They are in constant motion!)

So what's new?

Life in the Saunders house has been crazy over the last six weeks, and that is why I have been a terrible blogger.

School started. Will is in first grade and Cate is in pre-k. Both kids are doing well. Will has the same teacher and therapists and several of the same classmates as last year. He loves school, and I love that! Cate started at Abundant Life School, a small private Christian school, and is doing wonderfully. She loves school and is learning so much. Not that I'm biased in the least, but she really is a smart girl. She is learning lots of book stuff but also, more importantly, she's learning the Word of God. She learns a Bible verse every week and tells me about Isaac, Adam and Eve, Noah, etc. I love it! When she thinks we're not listening, I hear her teaching her big brother about the Bible stories she is learning. So proud!

Jeremiah has been on the job hunt but hasn't found anything yet. He's in the process of applying to be a substitute teacher for North Little Rock schools. Hopefully it will work out and he can work at least some. Now that both kids are in school, we really need for him to be working. money is tight, and some breathing room sure would be nice.

My job is going great! I love what I do and for the most part, love everyone I work with. Taking care of kids with special needs is what I was made to do. I'm in the second year of my three year fellowship and am starting to have to think about what I'm going to do when I grow up. I really didn't think it would happen so soon, but it is. So, I am praying and trying to stay focused on God's will for my life, not my will. There is a lot tugging at us to keep us here in Arkansas. While I know that wouldn't thrill my family, I have to remind them that Arkansas is not nearly as far away as Papua New Guinea or China (where I have friends who are missionaries), so it could be much worse.

Will is doing okay medically. His seizures seem to be stable. His increasing lower extremity tone is probably still progressing, but if so, it is doing so slowly. His MRI showed that the syrinx on his spinal cord has only grown a tiny bit and is still too small to operate on. The test for neurotransmitter disorders he had came back normal, which didn't surprise me. It's good that it was normal but doesn't explain why his tone is getting worse. I'm going to do my best not to worry about it though. I can't change it. All I can do is love my boy and provide the most love and best care he can get. And after attending the funeral of a child from his class at church this week, I am reminded of how lucky we are and how much worse things could be.

I know this hasn't been the inspirational or encouraging post I often try to write, but I just don't feel very inspirational right now. I'm praying for strength, peace, and provision for my family. I'm praying for physical health and healing for my son, my niece and nephew, my friend from work and many others. I'm praying for wisdom and guidance regarding the decision I'll have to make about work. And I'm praying for rest and renewal, for my mind, body, and spirit. I hope everyone reading this is doing well, and I hope to have an uplifting post for you to read soon. Until then...

Will Update

It has been about a month since I posted any sort of update on what's going on with Will to the blog, so here goes...

August has been a busy month full of tests, procedures, and doctors appointments. Will had an MRI of his entire spine under general anesthesia on August 11th. While he was under sedation, a lumbar puncture was done to test for neurotransmitter disorders. The actual procedures went well, and he came out of anesthesia fine. Unfortunately, Will had a lot of pain from the lumbar puncture. For the first 36 hours after the test, he wouldn't stand or walk. It was about 4 days after the test that he stopped crying all the time and not until a week after the lumbar puncture that he would lay flat on his back.

We saw the neurosurgeon on August 16th for results of the MRI. He said the syrinx (kind of like a cyst) on Will's spine had grown minimally and was still too small to operate on. He said it may or may not be the cause of what's going on with Will. If it is the cause, we have to wait for it to grow (and him get worse) before they can do anything about it. He wants to see us back in 6 months with another MRI to monitor the syrinx. We have appointments scheduled for February.

Will is currently in the hospital for a long-term video EEG. We were hoping to capture at least one of his seizures on it so we can better evaluate what's going on and give a more targeted medicine, but so far no luck. I guess it's a good thing that he's not having seizures, but it kind of defeats the purpose of the admission. We will go home tomorrow. I'm not sure what will happen if he doesn't have any on EEG. They may go on and add a second medicine, or they may wait and see if he starts to have more seizures again first.

We should get the results of the neurotransmitter test in another 2 weeks. We are also going to have blood drawn for mitochondrial disorders but haven't been able to get that done yet.

Will had his well child check on Thursday, and everything looked good. He hasn't gained much weight this year, but he's still at the 50%, so we're not too concerned. He is at the 75% for height. His doctor is helping us get him a new car seat and special needs stroller and filled out paper work for his new handicapped parking placard and Medicaid waiver application. It was a very successful trip.

We have ophthalmology and dental clinic visits in the next few months. Hopefully those will just be routine check ups. Thanks for all the prayers and support during this time. We love and appreciate each of you!

Daily Bread

We're doing a series on prayer at church right now. Pastor Rod is using the Lord's Prayer from Matthew to give us a pattern to pray. This week was the third week of the series, and he focused on the part of the passage that says, "Give us this day our daily bread." You would think there isn't much to say about that. Seems pretty self-explanatory. Boy, are you wrong! I learned more about that one sentence yesterday than I have in my 29 years of life (yes, I'm getting old!). And, I learned something I never really paid attention to before. Pastor Rod broke it down into even shorter parts, teaching about what each word or two meant and how it was useful in praying. But the part that really spoke to me was daily bread. He used the illustration of fresh-baked bread. If you've ever had it, you know that the day it is baked it is delicious. However, if you wait a day to eat it, it is hard and stale, nothing like it was the day before. God does not promise us tomorrow. However, He does promise us that He will meet our needs today. That is the whole point of daily bread. For God to meet our needs just for today. To give us enough strength, peace, hope, food, money, or whatever to make it through today. God knows what our day will hold, and if we can actually rely on Him, He will give us what we need to get through it. I'm sure most of you have heard the scripture that says to let tomorrow worry about itself. That's what we have to do...pray for enough for today, and then tomorrow do the same thing. It's day by day.
This lesson came at the perfect time. Our little family is in probably the roughest financial time of our lives together. I'm being very open and honest because I feel that some of you are right there with me (or have been) and need to hear this. When you have to tell people you can't do things (on a daily basis) because you don't have the money, it gets old. When you have to tell your child they have to wait to have something very simple until pay day, it makes you sad. But, God does not promise us that He will give us enough to go out to eat with our friends every week or to buy things for our children. What He promises is to meet our NEEDS. I have spent a great deal of time over these last weeks really focusing on what my needs are and what my wants are. I'm praying for God to meet our needs - food for today, gas for today, a roof over our heads for today. Do you see a pattern? I'm not praying for tomorrow. I need to focus on today. 
Give us this day our daily bread.....

Will Update

I want to start by apologizing to anyone expecting an inspirational post. This will not be that. I just don't have it in me this morning. I will, however, update you guys on what's going on with Will and where we are in all of this.
First, a quick recap for those who didn't read my last post about Will. He saw his neurologist on June 3 and we had some very unexpected things happen. We knew his EEG was abnormal, but this seemed to concern the neurologist more than I thought it would. I guess it's because he is on such a high dose of Keppra that she expected it to normalize. He also had several abnormalities on his neurological exam that were new and concerning. So, long story short, we were referred to three more specialists: epileptology, neurosurgery, and genetics. 
We have seen genetics. That appointment was on July 5. Will has had an extensive genetic work-up in the past, but given that his diagnosis is clinical at this point and all the changes, his doctor thought we should re-investigate. So, the geneticist said he would think about disorders or neurotransmitters or mitchondrial disorders. The first is only testable by a lumbar puncture (spinal tap). The second is a blood test. Jeremiah and I decided to think about it for a few days before making a decision, but ultimately we decided to pursue both. The reason for this is that some of these are treatable. Not that Will would be a "normal" kid, but treating could help stop the progression of what's going on and perhaps make that better. 
We saw epileptology on Tuesday (July 19). He thinks Will probably needs a second seizure medicine but wants to do a 24 hour video EEG before adding it. This way if they are able to capture a spell they may be able to tailor which medicine they chose to his specific type of seizures. This will require an inpatient overnight hospital stay and Will to leave the EEG leads attached to his head for 24 hours. I am not looking forward to that. We had planned on having the blood drawn for the mitochondrial disorders after that appointment but we waited for over an hour in the exam room for the doctor, and by the time we finished with the appointment, the lab was closed. So, we're going to have to take him back up to the hospital to get the blood drawn. 
We were finally called about his MRI yesterday. It is going to be on August 11 at 1:00 in the afternoon. He has to be put to sleep for his MRIs because he can't be still enough when he's awake. (I'm sure that surprises all of you!) What this means is that he won't be able to eat all day before the MRI. He can have clear liquids and jello (which he doesn't like) until around 10:00 but then nothing until he wakes up from the anesthesia. That morning is going to be a nightmare! We are attempting to coordinate the lumbar puncture with the MRI so that he won't have to be sedated on two separate occasions. I've been told that this should be possible, so I have my fingers crossed. We will see neurosurgery after the MRI is done, but we don't have an appointment scheduled yet. I emailed the specialty nurse this morning to let her know when the MRI was in hopes that she can get us in with the neurosurgeon the next day. 
Both kids start school on August 15, and I would be thrilled if we could complete this work-up prior to school starting. I am doubtful we'll get the EEG done before then, but hopefully we can get the rest done. 
Please continue to pray for us as we journey down this road of figuring out what's going on with Will. Any of you who know me well know that I am the type of person who needs answers. I'd rather have a not-so-good answer than not know anything at all. My prayer is that whatever is causing all of this is easily fixable, whether that means surgery or medicine. Regardless, I definitely need wisdom about how to go forward with future medical decisions, peace about the situation, hope that things will be okay, and strength to deal with this on top of the other stressors in my life. I appreciate you all and will keep you posted as the work-up progresses.

Unanswered Prayers

This is something I feel should be addressed. So many people believe that their prayers go unanswered. In fact, there is even a country song about it..."Sometimes I thank God for unanswered prayers, remember when you're talking to the man upstairs, that just because he may not answer doesn't mean he doesn't care, some of God's greatest gifts are unanswered prayers." Thank you Garth Brooks (and now you will all be singing this song all day long!). I think this is wrong, but so many people believe it's true. If God doesn't answer your prayer, exactly how you want it answered, in exactly the time you want it answered, then He doesn't care, wasn't listening, isn't going to answer, or whatever. Forgive my bluntness, but that's a bunch of crap! It has taken me several years to learn this, but God ALWAYS answers prayers. I know it's hard to see that when you're staring down the barrel of a loaded gun, per se, but it's true. It may not seem like it when your world is crumbling down around you. If God answers prayers, why did I lose my job? Why did my spouse/child/parent/best friend get sick? Why did my spouse cheat on me? Why aren't my kids following the Lord? Why is there so much war and sadness going on all around the world? Why? Why? Why? I have asked these exact questions. Why is my son disabled? Why can't we figure out what's wrong with him? But over time, God has shown his greatness over and over. Will can say more words than any other child I've met with his condition. He is a sweet boy who loves his family. He brings joy to every room he enters and blesses others beyond belief. God always answers prayers, but it may not be in the manner or timing we desire. We must remember that God's will and His timing are perfect. I know that's easier said than done, but it's true. Spend time with Him in His word and in prayer and you'll see it. I have several friends and family members going through some pretty serious trials right now, and I hope if you're reading this that you'll remember that in His perfect timing, God WILL answer your prayer with His perfect answer. I pray that we have the peace and understanding to accept God's will and answer to our prayers. So don't think you're prayers are going up into the big empty sky and that no one is listening. He is there. He is always listening. And, He will always answer. 

Parenting 101 (By Pastor Rod)

I want to be sure everyone is aware, this information is not from me. These awesome words of wisdom come from my pastor, Rod Loy, who is a very Godly man and a much more experienced parent than I am. He has two sons, one who is around age 20 or 21 and the other is 18. He shared this with us last night at church, and it's too good to keep to myself. So, here goes...

Principles for effective, Godly parenting:
1. Be physically affectionate with your children.
Don't let a day go by without telling them that you love them and hugging/kissing them.
2. Model sacrifice.
Sacrifice should not be unusual. It is a part of following Jesus. Let your kids see that.
3. Teach your children an outward focus. 
Be open with your giving. Let them know it is a habit and a lifestyle. Open your home to people who need you and your family. There is joy in giving to others.
4. Don't interfere with your children's peer problems and conflicts.
They have to learn to manage conflict at some point. Let them do it while they still have a safety net. 
5. Encourage other healthy voices in their lives. 
Kids need other spiritual leaders in their lives they can talk to and with. It needs to be the right people. It doesn't take a village to raise a child, it takes a church (that's one of my favorites!).
6. Worship and pray in front of your children.
Your kids need to see you visibly love God.
7. Apologize when you make parenting mistakes.
Your kids already know you made the mistake. You will gain respect from them when you do this. 
8. Don't try to be fair and equal if you have more than one child.
Kids need to learn that life is not fair and equal all of the time. You don't have to treat your children the same because they aren't the same. (Bet that stings for a lot of you!)


The other thing he shared is what I consider to be the most important thing of all, what he and his wife wish they'd done differently. Here it is: 


Don't raise your children based on your expectations or what other people may think. Raise them to please God first, not you or other people. The only thing that should truly matter is that your children become life-long followers of Jesus Christ. Consider what matters to you most - it shouldn't be all the little details or making you or someone else happy; it should be that your children become life-long followers of Christ (noticing a theme here?). Make that decision now, and parent toward that one goal. There will be a lot less stress in your life and your home if you put aside your expectations for your child and concern for what others think. What is the absolute best place for your child? (My Daddy has told me this every day) In the center of God's will. 


So, I hope this helps some of you. I know it was eye-opening and helpful to me. I plan to put every one of those principles into action and to focus on what really matters - raising kids who know and love the Lord and seek to follow Him daily. The rest is just details.

What's Really Important

As many of you may have read on my Facebook page yesterday, I got called pathetic by a coworker for couponing. Well, this set off a flurry of comments and excitement that I totally didn't expect. And, after reading them all, I started thinking. What's really the big deal about this? All I could keep coming back to is, taking care of my family is important to me. Right now, that requires more (financial) sacrifice than it hopefully will in the future, and I'm willing to make that sacrifice. If you don't know, I'm the sole bread winner for my family right now. While pediatric fellows do make more than pediatric residents, we still don't make much money. Especially when you compare it to "real doctors" who are in practice and done with training. On top of the not-so-great salary, I have a husband and two children, one of whom has special needs. We have student loan bills, credit card bills (unfortunately), and medical bills just to name a few. I know you've all felt this way, but it seems like just as we start to make a dent in one of them, or maybe even get one paid off, here comes another one, bigger and badder than the one before. Anyway, back to the point of this post. I felt like it was important to reflect back on what's really important in my life, my priorities. So, here they are, in order:
1. God. He is and always will be the most important thing in my life. Yes, more important than my children or my husband. More important than my family or my job. To be a true follower of Christ, He has to be the most important thing in your life. Without Him, I am nothing, I can do nothing, and I have nothing. 
2. Jeremiah. Yes, my husband and my marriage is the #2 priority in my life, more important than my children. I may not always act like it, and it hurts me to say that. This is something I'm actually working on right now, to make my wonderful husband know how much I love him and that he is the #2 (#1 earthly) man in my life. Those of you who think it's crazy to have your marriage and husband above your children in your list of priorities need to read your Bible. This is a biblical thing!
3. Will and Cate. The cutest kids on the planet. Most of the time the sweetest kids too! Being a mother is one of the greatest gifts a woman can be given, and I cherish my children greatly. I will do whatever I have to (as long as it is ethically and morally sound and legal) to take care of them and provide for them. And yes, if this means couponing, well then show me the inserts and hand me a pair of scissors!
4. My family and friends. I mean my parents, siblings, nephew, etc. They are the world to me. Any of you who know me well, know this is true. I love my family. I talk to them daily, alright, multiple times a day, on the phone. I go home to my sweet home Alabama whenever it's possible. I crave the time I have with them and wish I had more. They are my support system, the walls that hold me up when all the crazy storms in my life start brewing. Love you guys!
5. My job. I love my job, and I feel it is God's calling for my life. But, that does not make it more important than my relationship with Him, my marriage, my children, my family, or my friends. I think the world has this one totally wrong, and it makes me sad. Yes, I do on occasion have to sacrifice time with my family for my job, but this is temporary, and I make every effort to never miss the big stuff. And, it goes back to my desire to provide for them. The long hours of residency are over (hooray!!!!!). And fellowship too will end (although the hours are awesome compared to residency!). My point is, a job is nice and necessary, but it does not provide what is truly important in life. A good job cannot provide you with eternal life, and that is what really matters. This life is temporary, but well, eternity is forever (duh).
I could go on and on down the list from here, but I think you catch my drift. I hope you'll take time to look at your priorities and make sure they're in the proper order. Just remember what's truly important in life. Let the nay-sayers be just that.
 

Not What I Was Expecting

Will had a neurology appointment this afternoon. He had an 8 hour video EEG back in April because he was still having seizures despite a fairly high dose of Keppra and hadn't had an EEG since December 2007. So, we had one, and it was abnormal. His first one was as well. He is having subclinical seizures. For those of you who aren't familiar with medical terms, it means that even when we can't see physical symptoms of seizures, his brain is still having seizure activity. It's not constant, but it is frequent. Don't misunderstand, Will is also having clinical seizures (ones we can see), but since the last medication increase about 3 weeks ago, they have gotten better. But they have not stopped completely. Anyway, today at the doctor, she was pretty concerned that his EEG was still abnormal and that he is still having seizures on such a high dose of medicine. In fact, she said she probably wouldn't have even gone that high on this medicine, but her partner did. He doesn't seem to be having any ill-effects from it. So then she examined him, and it got worse. His reflexes in his legs are more brisk than they have been before. They're actually pretty brisk. For those of you in medicine, they're at least a 3+ if not a 4+. She also illicited clonus in both legs, more beats in one leg than the other, but I can't remember which.All of these are neurological changes that are abnormal. In and of themselves they are worrisome, but add that to the fact that there is a questionable cyst on his lower spine, and it's pretty scary. Will has been seen by neurosurgery a few times for the cyst and has had a few MRIs to watch it. The last MRI showed that it was stable and that it may actually just be that his spinal cord is wider at that point than normal and not actually a cyst. This was good news. We were supposed to have one more MRI in March and see the neurosurgeon again. If everything was stable or improved, we would be discharged. Well, the appointments got cancelled because the neurosurgeon was leaving...but not until the end of June. So why was his appointment for March cancelled you may ask? I have no idea. Well, today Will's neurologist said she wanted Will to get back in with this neurosurgeon before he leaves because this needs to be addressed. This, and the fact that Will is becoming tighter in his heel cords too. He's getting tighter in his feet, ankles, and lower leg. Also not good. His physical therapist at school was the first one to notice, and I'm glad she did. So, neurosurgery is referral number one. Now, onto a different neurologist. Because Will continues to have seizures and an abnormal EEG despite a good deal of medicine, his doctor wants him to see an epileptologist. This is a neurologist who specializes in epilepsy. She's hoping that this doctor will be able to recommend any further testing that needs to be done to figure out why he's still having so much trouble and any medication changes that might help. Referral number two. Finally, she says Will should see one of the geneticists here at Children's. He has had a genetics work-up before, but because his diagnosis of Angelman is clinical and he is having all these neurological issues, she wants a different doc to take a look at him and see if there is any other testing that needs to be done or any other diagnoses to consider. Now, this is referral number three. I'm sure you all realize this, but when you take your child to a specialist for an appointment, and she wants to send your child to three more specialists, that's not a good sign. I'm not sure when all of these appointments will occur. I'm assuming the neurosurgery appointment will be within the month since that doctor is supposed to be leaving at the end of the month. A perk of being a doctor is that I can get in a little quicker, well, sometimes. The neurologist spoke with the geneticist who said for me to email or call him and we'd set it up whenever was good for me. I don't know when the epileptologist appointment will be. I think within a few months (or at least I hope) because we usually have to increase his medicine every 3-5 months (at least we have over the last year or two). Anyway, that's what happened at the doctor today. I hope it's clear. If you have questions, feel free to ask, and I'll try to answer them. I do ask that anyone who is willing pray for Will. Pray that whatever is going on won't require any major interventions like surgery on the spine. But regardless of what happens, we know God has Will in his hands and that He has a plan for all of this. It's a little scary not to be in control, but it's pretty great that God is. So, to leave you with a smile on your face, here is a picture of the cutest little guy on the planet (with his beautiful little sister)!

 

The Greatest Day Ever!

So, if you live under a rock, then you may not know that Monday, May 23, was the first annual Will Saunders Day at Wild River Country, a local water park. This was a gift from our church to Will (and us of course) so that he could enjoy the water park and we could enjoy him. You see, as part of Angelman Syndrome, Will has a fascination with and love for water. I mean it too! If he sees water, he's in it. You name it, and he's played in it - the sink, the bath tub, the toilet, the dog bowl, the water hose, a puddle, a cup with water in it, and even the deep end of a pool (that was scary!). So when our church said, we love you enough to give your son something he'll love, we were elated! Okay, maybe that's not exactly what they said, but that's what I heard. Anyway, I want to show you some pictures from our day. There was a "real" photographer there, and when I get his pictures, I'll share them too. But, for now you're stuck with our amateur photography. 

Posing in front of the Will Saunders Day sign (I'm covering the "S" at the end of Saunders)

She was ready to swim!

His lips were blue and his teeth were chattering, but he was not getting out of the water.

I'm pretty sure he could have stood there all day and played in that little toy.

Her parents were in tears and said "Thank you. We never thought we'd be able to bring our daughter to a water park. This was amazing!"

Me and Will with Blythe and her mom, Donna. Blythe also has Angelman Syndrome, and her mother had never met another child with it. It was pretty neat getting to meet them.

To say the least, the day was amazing. I don't think I can really put into words what it meant to us to get this opportunity. But you know me, I'll try! We never thought we'd be able to take Will to Wild River Country. We knew he'd love it, but we would be way too stressed out trying to keep up with him and prevent him from getting lost, kidnapped, or drowning. This day allowed us to be "normal." We got to see our son do something he loves and something that "normal" kids get to do all the time. We've heard story after story from other families who felt the same way. We love our children, and wouldn't change them for the world, but I think deep down, every parent wants to get to do this type of thing with their child. 
First Assembly North Little Rock is a church that, as my mom says, puts feet to their faith. Their motto is "Every soul matters to God" and when they do things like this, they prove that they mean it. To anyone who participated in organizing, setting up, working, or attending Will Saunders Day, thank you from the bottom of my heart. Thank you for loving our son, and my family, so much. Thank you for loving other families too so that they could enjoy this day. Thank you, thank you, thank you! I cannot wait for next year!

I Have a Plan for You!

Anyone who grew up in or around church probably knows the bible verse "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11. Sunday morning in our current sermon series "Post-It Notes from God," Pastor Rod put this verse in context. You see, it's usually quoted alone, without the background information, to encourage someone who may be having a hard time or not sure what the next step in life is going to be. When you learn about what was going on when Jeremiah sent this mighty word to the Israelites, it means so much more. God sent this word to his people after they had screwed up royally. They had disobeyed God's instructions, and were suffering the consequences. Even in their sin and disobedience, God said (my paraphrasing), "I still have plans for you. Even after you ignored what I said, I still have plans for you. And they are great plans. Plans to take care of you and protect you." Personally, I think that's pretty amazing. 
Even though I've never done anything the world would consider major sin or really bad, I, like everyone on this earth, have sinned and unfortunately disobeyed the Lord. Anyone who said they have never sinned or disobeyed is lying (which is a sin!). Anyway, I find it comforting that no matter how much I screw up, He's still there and still has a wonderful plan for me. His plan isn't quite how I pictured it would be. Isn't that usually how it goes? We plan this awesome things we're going to do as we grow up - what job we'll have, who we'll marry, where we'll live, what our kids will be like. It's not until we deny ourselves and listen to God that we realize the mighty plan He has for us. I was always going to be a doctor. It's the only thing I've ever said I want to be. But, I was NEVER going to be a pediatrician. I was going to be an orthopedic surgeon. Then I was going to be an OB/GYN. It wasn't until I was able to ignore my plans and focus on His that I realized the plan He had for me. And yes, for anyone who may not realize it, I am a pediatrician. In fact, I'm in fellowship now to become a developmental-behavioral pediatrician. I certainly never planned on having a child with a disability, but God knew what He was doing when He gave us Will. Why do we question if God knows what He's doing? We always seem so surprised, and say, "I guess God knew what He was doing." Duh! Of course He does...He's God! Anyway...
One more example of God's plan and the incredible faith it takes to follow it is the story of my best friend Jessi George and her family. They recently picked up and moved from Mississippi to Papua New Guinea to be tribal missionaries with New Tribes Missions. This has been their dream for six years now, and yesterday, they realized that dream. They are now in their temporary home there and are loving it. Many of us, even me at times, thought "They're crazy! Taking those three little girls (ages 9 months, 3 years, and 5 years) all the way around the world to live in a mud hut. What are they thinking?" But we're the crazy ones. Following God's plan may seem crazy to some, but if you don't follow His plan, that's when I'd question your sanity! This family has demonstrated unwavering faith despite many worldly setbacks, and now has been rewarded with the desires of their heart. 
Just think, following the Lord, living for Him and in His word daily, will allow you to see the unbelievable plan He has for you too! No matter what you've done, where you've been, or who you are, God has a plan for you. Never doubt that. You're NEVER too far gone for the Lord to bring you back. Just read Jeremiah chapter 29, and you'll see how far the Lord can bring you.

Gonna Make You Stronger

I'm totally over this whole knee surgery thing! I'm tired of hurting. Tired of being limited in what I can do. Tired of hobbling around. I'm ready to be better and get back to my life. I'm not used to sitting around with my leg propped up while I ask other people to get things and do things for me. Frankly, I hate this. It's been three weeks now, and I am getting better. But, I still hurt. And the hurting is the thing that seems to limit me the most. I'm doing well with my rehab and bending and straightening my leg. It's getting stronger everyday, and my therapist says I'm right where I should be. But...I still hurt.
The other night I had a break down and threw myself quite the little pity party. Why me? That is the dumbest question ever. (By the way, if you want more answers to that question, come to First Assembly NLR on Easter Sunday.) I don't even know why I ask it. As if leg surgery was the worst thing in the world that could ever happen to me. All I have to do is turn on the TV and I'll see people who are suffering so much more than I ever have. Earthquakes and tsunamis. Tornadoes. Women killing themselves and their children. I mean, really, knee surgery? "Get over it!" I told myself.
"You will get better. It just takes time." I'm really tired of hearing this, and I think it's because this is the hard part for me. I am not a patient person by nature. I have to pray for patience on a daily basis. I also have to remember that God tells us we should consider it pure joy when we face trials. It's hard to think of knee surgery as pure joy, but if it develops my perseverance, character, etc. then I should be joyful about that. 
The morning after my glorious pity party, I got in my car to drive to work and was listening to K-LOVE. (I love that station! You guys should check it out.) A song by Mandisa titled "Stronger" came on. What a wake-up call! It was exactly what I needed to hear. So, I thought I'd post the lyrics because I have a sneaking suspicion that one of you may need to hear them too.
                        
                           Hey, heard you were up all night
                           Thinking about how your world ain't right
                           And you wonder if things will ever get better
                           And you're asking why is it always raining on you
                           When all you want is just a little good news
                           Instead of standing there stuck out in the weather
                         
                           Oh, don't hang your head. It's gonna end
                           God's right there, even it it's hard to see him
                           I promise you that He still cares

                           When the waves are taking you under

                           Hold on just a little bit longer
                           He knows that this is gonna make you stronger, stronger
                           The pain ain't gonna last forever
                           And things can only get better
                           Believe me, this is gonna make you stronger

                           Try and do the best you can
                           Hold on and let Him hold your hand
                           And go on and fall into the arms of Jesus
                           Oh, lift your head, it's gonna end
                           God's right there, even when you just can't feel Him
                           I promise you that He still cares

                           'Cause if He started this work in you life
                           He will be faithful to complete it
                           If only you believe it
                           He knows how much it hurts
                           And I'm sure that He's gonna help you get through this

                           When the waves are taking you under
                           Hold on just a little bit longer
                           He knows that this is gonna make you stronger, stronger
                           The pain ain't gonna last forever
                           And things can only get better
                           Believe me, this is gonna make you stronger
                          
                          

Sometimes All You Can Do Is Laugh

So, like most of you, my life is pretty stressful. I am a wife. I am a mother of two young children. I am a first year developmental-behavioral pediatrics fellow. I am a part-time Sunday school teacher in the special needs youth class. Oh yeah, and I'm a pretty rockin' blogger. 
Well, you know that expression, "When it rains, it pours" ? That's my life right now. As I've mentioned before, I had reconstructive knee surgery almost two weeks ago. The injury was much worse than the MRI showed, and the surgery was more extensive than originally planned. Because of that, my recovery is going more slowly than I'd hoped. I'm hurting all the time and getting very frustrated. I had a breakdown last night, which was lovely by the way. I'm just so stinking tired of not being able to do the things I normally do. I'm tired of having to have things done for me. I'm tired of hurting. I'm tired of it all. 
And, as I've mentioned a million times, I have a child with special needs. He is the most amazing little boy and the light of my life. He is also the cause of much stress and frustration. He can't help most of it, and I have to remind myself of that everyday. I know he is on this earth for a reason, and I hope I'm around to see what that is. Well, he did one of those frustrating things the other night. While we were sitting in the den, all hanging out, he calmly walked up to the TV and wacked it with his sippy cup. I'm sure you can guess what came next. The screen cracked and went black. We are now the proud owners of a 42 inch flat panel wall-mounted radio. Did you know that make flat panel TV screen protectors? Me either. Sure wish I did before this happened. Needless to say, we have one on it's way to put over our new TV. 
There are a thousand other things that I could write about that cause stress in my life, but it would be like beating a dead horse. If any of you have money troubles, job problems, health problems, sick kids, marital difficulties, depression, anger, or whatever, then you know what I'm talking about. The biggest issue with all of these things, in my opinion, is how we choose to react to them. We can do like I did the other night, and have a breakdown and cry....or we can choose to laugh. If you're life is as stressful as mine and you choose to breakdown and cry every time something bad or stressful happens, you'll spend your entire life in tears. That's why I always say, sometimes all you can do is laugh. Turning to those you love in times like this can be a lifesaver. Turning to the one who loves you more than anyone or anything else will save your life. The Lord knows what you're going through. He knows the stress, the pain, the anger, the guilt, the whatever it is. So, when you're in the middle of it, choose to laugh. 
"As pressure and stress bear down on me, I find joy in your commands."  - Psalm 119:143

Ode to Catiebug

I love my little Catiebug! I feel like she sometimes gets the short end of the stick because of all of her brother's needs. She is an angel...rotten, but an angel, and I want you all to know how absolutely wonderful she is. I write all the time about Will, and he derserves it. He's awesome. But Cate is awesome too, and I want to give her the praise she is due. 
Cate will be 4 next month, and cannot wait for her birthday. She is having a princess tea party with her friends. They'll get to dress up in princess dresses, get their make-up done, have their hair done, and have their nails painted. Then they'll have a tea party and eat cake. I think I'm as excited as she is about this party. It's her first "real" party. She tells us daily she wants a pink princess bike for her birthday, and I'm pretty sure she's going to get one. (Thanks Gran and Papa!) 
Princesses are all that exist in her world at this moment. She is the girliest girl in the whole world! She loves pink and purple, hair bows, dresses, tutus, dress up, baby dolls, and did I mention she loves princesses? Her favorite is Snow White, but she has recently developed quite a fascination with Jasmine. We go around the house singing "A Whole New World" and driving her daddy crazy. 
Cate is in mother's day out at our church two days a week right now and will start a full-day pre-K program at Abundant Life School in the fall. She's very excited that she'll get to go to school everyday like her big brother. We're excited because we're hoping that Jeremiah will be able to work while the kids are in school. She can count to 15, knows all her colors, knows many of her letters, know all her shapes, and is pretty brilliant if I do say so myself. 
Cate is a wonderful daughter and an amazing sister. She helps her brother when he can't do something. She sticks up for him and tries to teach him things. She plays so well with him, and doesn't seem to care that he's not like her friends' brothers and sisters. She can be a little bossy and "mother" him, but I think she means well. I hope that as she gets older that she continues to love her brother as much as she does now and treats him as sweetly as she does now. 
I'm so very proud of the little girl she is becoming, and I wanted you all to know how wonderful she is too. And of course, I have to post some pictures....enjoy!

 

Blessings Just Keep on Comin'

Like I said in my last post, I'm not going to focus on the bad stuff in my life or worry about the stuff I have no control over. What's the point in that? It doesn't do anything but put me in a bad mood. It certainly doesn't change the situation. So, I thought I'd take time to count a few more blessings I've had over the last week or two.
First, a little over a week ago Will was invited to his very first birthday party. I was such a proud mama when his mother asked me if Will could come. Are you kidding (I thought)?!?! Of course he can come! We lived in Tulsa for seven years, and during the entire time Will was alive, he was not invited to one party (other than those at The Little Light House). I know some people don't know how to respond when he does some of his "Will things" or are scared he may get hurt, but he's still a little boy, and it makes me so sad to see him watching other kids doing things he can't do. It almost seems like he knows he can't do them but he still wants to, so he just stands in the background watching. Well, since we've moved to Little Rock, things have been different. In case I haven't mentioned it, WE LOVE OUR CHURCH!!! The people there have gone out of their way to make us feel loved and welcomed, and that includes Will. So - back to the story - we went to the birthday party at Jump Zone. Will loves to jump and does so every Sunday at church, so I knew he'd like it. The only thing I was worried about was the number of kids there and if he'd get too overwhelmed. Well, he didn't! He did great! He jumped and jumped and jumped (and he only sat on one baby!). It was so fun to watch him do something that all the other kids his age get to do. And, the kids at the party were so sweet to him. Several of them also go to his school and came up to him and said, "Hi Will!" Then they'd tell me, "He goes to my school." Anyway, the party was a huge success. He had a great time, and so did I. Feeling like my son is wanted is a huge blessing. 
Then, the following day, Jeremiah and I tried to go to Winter Jam. We had some terrific friends agree to come over and watch the kids, so we didn't have to pay for a sitter. They brought their kids, and they played with Will and Cate. All the kids had a wonderful time together. Winter Jam was sold out, so we went to dinner and a movie. It was our first date since August of last year. It was so nice to spend time together, just us. It was even nicer that we didn't have to pay for a babysitter. I look forward to repaying the favor so that our friends can enjoy some time together too. 
One last blessing - while I was out of town at a conference for work, Will's school had family fine arts night. His teacher informed me that he would be singing one of the songs with the regular class. I thought to myself, I know he is doing great and that his vocabulary is exploding, but have you met him? There's no way he can get up there and sing with his class. Boy was I wrong! He stood up there like a "big boy" and did motions and said "yeah yeah" when all the other kids said it. I paid $9.95 to get internet access at the hotel just so I could watch the video, and boy was it worth every penny! Most parents probably take things like that for granted, but this was Will's very first performance of any type, and he did so well. I am one proud mama! 
Each week at church I learn something very useful to me and am trying to put the lessons I learn into practice. So, hopefully the only thing you'll read in these posts is uplifting and encouraging. I hope you enjoy my little stories. I also hope you enjoy these pictures of my little blessings posted below.

Count Your Blessings

Have you ever had one of those days? I'm sure we've all had a million of them, but today is NOT one of those days for me! I woke up with perfect hair - a miracle if I've ever seen one! What's the big deal you may ask? Well, this good hair day allowed me to have half an hour of "me time" this morning that I usually do not get (because I usually spend that time doing my hair). I am convinced and determined that this is the start of a great day. To make today even better, I get to go to church tonight. I know I've talked a lot about our church here in North Little Rock, but I truly cannot say enough good things about it and the awesome people of God who go there. Anyway, back to the point...
Lately there have been so many terrible things going on all around the world - riots, natural disasters, civil war, a crappy economy, and government unrest. It would be so easy to just focus on that and worry. Well, as most of you know, I'm a worrier. It's genetic. My mother is a worrier, and her mother was a worrier. I've been told by my dear sweet husband, whom I love with all my heart, that I am my mother, that my mother is my grandmother, and I guess by default that makes me my grandmother. (By the way, I take that as a compliment!) Earlier in the year I wrote about being a giant killer and how my personal giant is worry. I've really been trying not to worry and to put things in God's hands. What's the point in worrying? It doesn't change a single thing. The Bible even says so in Matthew 6: 27: "Who of you by worrying can add a single hour to his life?" 
So instead of worrying today, I am going to count my blessings. I'm not going to list every single blessing in this blog posting because I'd be here all day (and unfortunately, I have to go to work), but I do want to list a few blessings. These blessings are especially important to me because they are things I thought I'd never have. You see, we never thought our little Will would be able to do half of what he can do today, especially talk. And while he can't talk like a normal 6-year-old little boy, he can say more than I ever imagined he'd be able to. I want you all to know what a miracle the Lord is performing in my angel's life and praise God with me for these blessings. So, without further adieu, 
Will's Words: 1. Juice (his first word, spoken at around 2 years 6 months)
                        2. Cookie
                        3. Please
                        4. Thank you
                        5. Uh-oh
                        6. Book
                        7. Baby
                        8. Mama (my favorite! spoken for the first time on Mother's Day 2010)
                        9. Papa (my dad's favorite!)
                        10. Backpack
                        11. Piggy (his word for his toes...you know, "this little piggy went to market")
                        12. No (my least favorite of his new words)
                        13. Yeah
He even has a few phrases now. They're not perfect but they are understandable to most people, especially those who are around him a lot. They include: "Where are you?"  "What's this?"  and my very favorite "I love you!" Will's syndrome means that he'll always have delayed language and probably not ever have very many words. Most kids with it never talk at all. From what I've read even the highest functioning kids only get somewhere around 50 words max.
So, these 13 words and 3 phrases are 16 of the biggest blessings in my life. I hope that you can quit worrying about all the badness going on around you (or even in your personal life), and take the time to count your blessings. I bet you'll have more than you ever imagined!