prayer for Micah

We've been having a really difficult time with Micah for several weeks now and we are asking for prayer for him. We thought that it was just that he needed routine, having been out of school for several weeks but he has now been in school for a month and should have adjusted by now. We have had lots of days of him just not being happy anywhere...home, school, or church. He has been aggressive at times, hitting and kicking his teacher and aides in the classroom and us at home as well. Sometimes he is just ornery; he will knock things off any surface, throw toys, or pull on our dining room chairs, etc. Sometimes when he does these things he just looks at you and laughs.

We have been trying to get his behavior medication worked out. One that he started in April seemed to really help but then perhaps lost its effectiveness in the summer. He has been on it but it seemed to really make him sleepy in the mornings and was not able to function at school so we took that away. We started a new med on Monday and it has not gone well. He has been even more hyper, constantly pacing, and not cooperative in the least, especially at school. His teacher cried yesterday and she has never done that. She just does not know what to do anymore. She said it seems like he is not the same Micah as last year. He is not willing to work on any goals or willing to be worked with one on one. She has been teaching for 35 years and she knows what she is doing. He has the same teacher and classroom as last year. They are having a hard time working with the other students because one of them (teacher and 2 aides) is having to be with Micah so much. They are fearful that he will hurt himself or someone else because he has been so rowdy.


We have also been doing a nutrition therapy with Micah and so far it's just that he's getting some supplements of protein, Omega 3s, and a high quality multivitamin. We have been doing this for about 6 weeks and haven't seen much improvement and his eating habits are not much better.


Probably the next step is for him to have a MRI of his brain to make sure there is nothing different going on with the growths there, etc. We were supposed to do that in December, but I think it may need to be sooner. I don't know that it will provide any answers, but it's worth a try.


I went to a seminar on Mon and Tues in Little Rock for the Picture Exchange Communication System. I know Micah's speech therapists both at school and the other clinic he goes to have been doing this some and we want to pursue it at home. I'm sure he is frustrated a lot about not being able to communicate much and we are desperate to try and communicate more with him.


I woke up a couple of times in the night thinking of my conversation with his teacher and just anxious, wishing we could find some solutions. I know Philippians 4:6-7 says "Don't worry about anything, but in everything, through prayer and petition with thanksgiving, let your requests be made known to God. And the peace of God, which surpasses every thought, will guard your hearts and minds in Christ Jesus." I know I'm not supposed to worry, but these days it is hard when we feel like we are trying so many things and not much is improving. All I know to do is to continue to trust and pray. I would be honored if you would join me.

One last thing, I am going to Alaska on a mission trip with my church, leaving this Saturday and coming back the following Saturday.  I'm so excited about it.  I must admit, I'm a little conflicted with everything going on with Micah, yet we have been planning this for months and have made arrangements for family to be here with him and Gabriel and to help Wayne.  I would appreciate your prayers for this trip as well.  I'm looking forward to seeing what God is up to in Alaska!

A couple of snippets

I am loving Gabriel's mealtime prayer these days (it's been the same for several days) : "Thank you God for the food and we can have a good night's sweep and pway outside."  The poor child doesn't get to play outside much because it's still so hot so I guess he feels the need to pray about it!

I took Micah to his dermagologist the other day because of a perpetual rash on his arms.  She suggested we put vaseline on it and wrap it with saran wrap to see if that helps since what we've tried hasn't worked well.  I sort of stared blankly at her all the while thinking that I might have a timer ready if and when we do it to see how long it stays on his arms.

She also commented on the bumps on his face (that sort of look like acne) that are characteristic of TSC and asked if he was about to go through puberty.  I said "I sure hope not!  He's only six!"  She said "Oh my gosh, he looks so much older!" 
He could pass for 8 or 9, but probably not 12 or 13!

Back from an unintentional blog break

Micah's first day of school

Gabriel making Jello

Wow. It has been a long time since I last posted! There has been a lot of things going on and a lot of traveling. Most of it has been good, but it has honestly been a hard 6 weeks or so. Micah started back to school last week and has not really adjusted well. The teacher told me Friday that it was the worst day she'd ever had with Micah (this is her second year to have him in her class). He has been really difficult to control with a lot of smacking at adults, pulling on them (us) and even kicking. He was actully doing a lot of this in recent weeks. All we can make of it is that he has just been so out of routine and hasn't known what to do with himself. During June, he was in a half day summer school program so he at least had some sort of regularity. After that he was here every day and then we also traveled a few different places in July and early August. With having record heat here in Fort Smith, as high as 115 and never going below the 100s for a few weeks, there are few places to go in this town...especially with both of them by myself. I'm sure part of it has been complete boredom.

His teacher told me she thinks it may even take longer than a week for him to adjust back to the routine. He has also been waking in the middle of the night a few nights a week and not going back to sleep and then sometimes not even taking a nap later that day! I don't see how the kid does not fall over from exhaustion! We are consulting his Drs. for wisdom.

I will post some pictures and other news of our summer in the days to come.

similar situation

One story in the book "Plan B" really impacted me because it was similar to our story. The difference was that this couple had already served on the mission field and had twins and their twins were born very ill. They survived but it was discovered after some months that they were both deaf. Their father was quoted as saying "This is not the way we thought parenting was going to look. This is not the way we thought ministry was going to look. This is not the way we thought life was going to work." I could relate to that. The author of the book follows that by saying:

"I think this is a difficult truth to grasp, but God loves you enough to strip you of anything that keeps you from him. And often these things that separate you are not bad in and of themselves. Often, in fact, they're good things-relationships, missions, jobs. But if for some reason they are keeping us from knowing God as we should, he may take them out of our lives." Then a few paragraphs later he says "Time and time again in your life you're going to feel as if God isn't showing up. You're going to feel as if God isn't healing, he isn't restoring, he isn't releasing his mighty power. These moments are crucial because God is trying to get you to the place where you can't handle things on your own, where you are willing to surrender your plans in order to receive his. He's trying to mature your faith."

I really think it was easy when I was in college, single, doing my own thing, traveling the world and the states serving in missions. I thought back then that my faith was growing. It was, and I will always be grateful for those days, for God's hand in places I lived, the opportunities I had, and the people he placed in my life in those days. I honestly feel though like he has grown my faith more in the past several years through marriage and through having kids, and having one with a disability to really grow my faith. He continues to do that.

Long but decent day at ACH

Some of you know that we had three appointments at Arkansas Children's yesterday for Micah. The first one was for Nephrology (kidney specialist) because he had an ultrasound about 6 weeks ago that revealed numerous tubers in one of his kidneys. We had been told when he was a baby that this would be a strong possibility as he got older. These growths (angiomyolipomas) usually occur in about 60 percent of kids with TS. They aren't problematic unless they grow or get to a point of hindering kidney function. So, what we were told yesterday is that though Micah has many of these tubers in his kidney, they are very small and are not threatening at all at this point. We will just have to monitor the situation and see the specialist again in a year.

The hardest parts of the day were Micah getting blood drawn (it took Wayne, myself and two other nurses restraining him and another to stick him with the needle). He just didn't know what was going on and the kid is so strong already at 6 years old! We had to hold him down for the ultrasound as well. After those appointments, he was fine.

We saw his neurologist in the afternoon and actually got in to see him a little early, which was a blessing! We really like Dr. Sharp and have seen him several times now. He explains things very well, he talks about options (medications) and asks what we want to do rather than saying "this is what we'll do". He is very good with Micah too and I think Micah is comfortable around him. He said in December it will be time to do a MRI of his brain to check on the tubers there and at that time a neuro-opthamologist will check for growths in his eyes and nerves around his eyes. We haven't done that since we lived in California.

All in all, it was a good day with a good report about the kidney. Also for all the waiting around and shuffling to different places, Micah did well. We had some sweet friends who kept Gabriel for the day and that was a HUGE help to not have to shuffle him around as well.

Happy 3rd Birthday, Gabriel!

Gabriel is three years old today, which doesn't seem possible. I think all mothers say that and I'm sure I will continue to say it as the years go by. I thought it would be fun to post some pics from the day of his birth and one recent one. By him having his feet in the sink, it's a perfect picture of a child acting his age. It was a few weeks ago and Wayne was occupying Micah while I cooked supper. Somehow Gabriel was left unattended and we found him in the bathroom with the sink filled with water. It was one of the moments when you get frustrated but you just have to laugh.

I have mentioned to some about the story of Gabriel's birth, not that it is all that unusual but it was a bit comical and had some unexpected twists as he came quickly (similar to Micah's birth). There was no time for an epidural or any other pain relieving medication though I had already decided I didn't want any. I'm kind of crazy like that. Anyway, I'm going to attempt to link the post because I wrote all about it on this blog 3 years ago.

Fun weekend

Last weekend our dear friends Charley, Marianne, and Joshua came to visit for the weekend. We had so much fun! We went to eat tasty catfish on Friday night and Saturday afternoon we took the boys to the sprayground here in town. As you can tell from the pictures, Micah had a blast! He loves to go to this place and obviously doesn't even mind water sprayed right at his face or head. All three boys had so much fun. Sunday evening our church rented out a water park nearby so we all got to enjoy that as well. We enjoyed catching up with each other and Joshua and Gabriel had a great time playing with each other.

An attitude of gratitude

From "Plan B"

"What if we viewed our hardships and challenges as opportunities to be the men or women God has created us to be? What would happen if we stopped grabbing for what we're owed and tried to receive each moment with gratitude?"


"What are the triggers that remind you of God's faithfulness throughout your life? Without these reminders, you will always be tempted to doubt, push back, or even walk away when you find yourself at the wall."


When I played basketball in high school and we were traveling back from an away game, someone would usually start the chant "Attitude check" and everyone would respond "One, two, three, Praise the Lord!" I guess it was a way of keeping perspective whether we won or lost.

Someone else wrote that staying in an attitude of despair or discontentment keeps you from seeing God's blessings in your life.
It's easy to get prideful and focus on something not going the way I want. All it takes is a reminder of God's faithfulness and who He is to give me an attitude check.

Teaching him how to pray

This is the only photo I took at our Circle of Friends camp over Memorial Day weekend. We have some more that others took on a disc. I'll be posting some of those later in the week with some details about that weekend.

For now, I couldn't resist posting this photo. This prayer bench was outside our room in the hallway. Gabriel asked what it was so I told him it was one way you could pray to God and then I knelt down on it and showed him. So, he wanted to try it. Precious, isn't it?

Wild Things Farm Visit #2

The horse was a little too close for Gabriel's comfort
Hayride

Feeding the goats stale popcorn

Gabriel and his friend Isaac

Pig race

Proud of his strawberries

A couple of weeks ago Gabriel and I went to the Wild Things Farm with our MOPS group. We had so much fun. It was a perfect, cool, cloudy day and we enjoyed a hayride, picking strawberries, petting the animals (well, I didn't pet them!), having a picnic lunch with some other moms and kids, and homemade strawberry icecream just before we left.

Gabriel did a good job picking strawberries. I had to teach him to look for ones that were red and not too small. They were so tasty and only lasted in our house for about two days. The ones you buy in the store just don't compare!

Sometime I want to take Micah to this place; he has been in school both times we've gone. Blueberries are in season now...yum!!

God is working

Here are a few more gems from "Plan B":





"When our plans, dreams, and desires crumble, our faith tends to take a hit. We instantly feel let down and distant from our Heavenly Father. And yet the truth is that God is most powerfully present even when he seems most apparently absent. He's always working. Even when we can't see Him or feel Him, all the circumstantial evidence of our lives will testify to His presence."

"Just because God calls you to some venture, that doesn't guarantee the venture will succeed. Just because life doesn't turn out the way you thought that doesn't mean you missed God's will...it's as much about the person we're becoming as it is about where we're going."

"We think our suffering is a sign that we're getting something wrong, not evidence that God is at work to teach us and bring us blessing."

"In this life, many questions will not have answers....God will never change. This is why our faith must rest on his identity and not necessarily his activity."

Throughout the last few years, I occasionally wondered if we missed God's will or if we got something wrong because things didn't turn out the way we thought. I know it's distorted and wrong. He allowed everything to happen for a reason. I may never have answers as to why, but I do want to allow him to shape me and grow me.

John chapter 9 is a good reminder when we wonder if sin causes illness. A rabbi asks Jesus if the man born blind sinned or if his parents sinned. Jesus said "Neither this man sinned nor his parents." "This came about so that God's works might be displayed in him..."

Betty's 80th

Co-workers from Harris Hospital

Betty with grandkids and great-grandkids

the whole family minus Tucker

Last month I was so glad to go to Fort Worth to celebrate Betty's 80th birthday! Anybody who knows me well has heard me talk about Betty. She is one of the dearest friends I have and has been for 22 years! We worked together at Harris Hospital in downtown Fort Worth. I was just 18 when we met and we developed a great friendship. We have seen many movies together, enjoyed all kinds of food together, been on road trips, shared stories of our families, prayed for each other, and have laughed so much. Her love for Jesus and God's Word inspired me early on in our friendship to want to know Him more. I have learned so much about life as well as loving and serving God and others through my friendship with her. She is the kind of person who knows how to bring out the best in anyone.

I've been blessed to know all 3 of her kids, watch her grandkids grow up and get married and have kids of their own. It is maybe what some would call an unlikely friendship, since there is a 40 year age difference, but I'm thankful to God for our friendship all of these years and that we have been able to maintain it despite living hundreds and even thousands of miles from each other for a good portion of the time we've known each other.

Thoughts on the book "Plan B"

One of the most impactful books I've ever read is a book called "Plan B" by Pete Wilson. I actually read it several months ago and have been slowly journaling about it over the past few months. So, I thought that I would post about something from the book that affected me for the next several weeks.

The subtitle of the book is "What do you do when God doesn't show up the way you thought he would". It's essentially about any circumstance that may have changed one's life in some capacity: loss of job, loss of loved one, miscarriage, illness, etc.

Of course for us, the major life-changing circumstance was Micah's diagnosis of Tuberous Sclerosis. It changed the direction of our lives and showed us that we don't always know what God has in store, even if we plan in certain ways and think we know.

So here are the first two quotes:
"Our trials of life seem to chip away at us, leaving us exhausted, confused, and vunerable. We resign ourselves to the fact that things simply are the way they are and there is no hope that they will ever be any different. Feeling hopeless, we either run, taking things into our own hands, or we give up instead of waiting on God to act."

"Control is an illusion-we don't like being reminded of that. We want to win, be right, and do it our way-this powerful desire leaks into our marriages, our jobs, our parenting. The only thing you do control is how you respond to your disappointments and your unexpected obstacles. You can allow the river of fear, anger, and disappointment to just rage-that will affect every relationship you touch, every job, every plan you dream."

I can say that I haven't always responded well to the disappointments and unexpected obstacles. I think I am continually learning how to deal with fear and anger. I think that I have learned over the past 5 and a half years that giving up control is a process and a continual way of growing in my faith.

Fun Conversations

Last night after Gabriel's bath I was commenting on how long his fingernails and toenails were. He said "My nose is getting long too."

"Are you Pinocchio?" I said, realizing he doesn't even know who that is.

"NO! I not nocchio!"


We have not planted our garden yet because it has been too muddy from all the rain. Tonight Gabriel informed us that in his garden he is going to plant tomatoes, cantelope, hamburgers, and a taco tree. Sounds tasty to me!

Mother's Day past and present

May 2011

getting both to look at the camera is rare

travel mug & coffee!





May 2009 baby dedication day & Mother's day

Micah 2005 with some of my favorite treats

I know I missed posting last week and didn't keep my word of posting at least once a week...maybe I'll make up for it this week. I thought it would be fun to post pictures of past mother's day (the boys' first mother's day pics and this year). The last one of Micah "holding" my treats is so cute. We had to prop him up for the pic. Wayne found some of my favorite treats; cream of wheat was expensive in San Francisco, so we didn't buy it much!

In 2009, I think I'm wearing my Mother's Day gift. It was baby dedication day at our church. This year, I got a nice Starbuck's travel mug and one of my favorite Starbuck's coffee blends, Gold Coast. It's in two plastic containers because Micah immediately carried the bag of coffee off, threw it on the ground, and it busted. Those bags are usually a little sturdier than that. I think it spilled about $1.50 worth of coffee!

I tried to get a picture with both of them, and you see what came of it. And just ignore that weird pose of the one with Gabriel and me. I was trying to hold on to him and keep my balance, thus the strange angle of my arm against the tree. You probably wouldn't have noticed if I hadn't pointed it out!

We missed celebrating Mother's Day with either of our mothers. For now, UAFS has commencement on Mother's Day weekend, and that is Wayne's big responsiblity so we cannot travel on that weekend. I had a good Mother's Day. It was so cute to watch Gabriel. He was so excited to bring me my gift that morning, though I think he thought he was going to get a "presinent" because Wayne kept coaching him "Don't open it, Gabriel. Just take it to Mommy."

I will say these are challenging days with Gabriel being in the trying twos (I hate to say terrible), with temper tantrums, and really wanting to assert his will. Micah has been doing much better with his behavior, but is very much in a don't-want-to-be-around-Gabriel stage. It makes life challenging because Gabriel can be a little attention hog and if Micah is sitting with one of us and Gabriel comes near, he will just go away. Micah really enjoys one on one attention and it's just not easy to do that right now.

Even with the challenges, I'm so thankful for my boys and love them more than I can say. One of my dearest friends in the world has been pregnant twice and miscarried both times, the second one was lost in the 2nd trimester. She has not been able to get pregnant again. I interacted with two families over the weekend who have both lost a child in the last year. One was a 2 year old boy with leukemia and the other was a 5 year old girl who died suddenly from brain cancer that they didn't even know was there. It certainly gives me perspective to think "Yes, some moments and days are frustrating and very draining with my boys, but at least I have them and I need to treasure these days no matter how difficult."

Gabriel's chattering

It's been so fun and fascinating to watch Gabriel's language develop. Since we haven't been able to see that with Micah, it's been really interesting with Gabriel...just amazing how much he picks up from people talking, TV, and from other kids. He's pretty much speaking in complete sentences and even starting to ask questions like "What are you doing, Momma?" or "What are you making?"

We have a rosebush in front of our house right beside the garage. For a couple of weeks he wanted to stop and smell them every time we got into or out of the car. And he would want me to stop and smell them too. He said they smell like strawberries and for a couple of days he

was calling them strawberry roses. The other day I was making chocolate chip cookies and he said "What's that?"

I said "It's flour."

"Like the roses, Momma?"

"No, it's a different kind of flour."

He has picked things up from TV that I have heard him say out of the blue: "like a good neighbor... (State Farm...)", "ABCnews.com", and last week in Wal-Mart I happened to pass the yogurt section and commented about Activia and he started singing very loudly "Activia!!!" over and over. A while back we were at the Fort Smith Museum of History and there were pictures of the presidential inauguration and he pointed and said "Obama!"

He is already starting to tell us things that Micah wants or doesn't want which sometimes is good and not so good at other times. He also knows what all the traffic lights mean. He will ask "What red light means, Momma? What green light means? What yellow light means?" He knows the answers and if I happen to turn right on red, he notices and will say "Momma, you're supposed to stop!"

I could've included more, but that's a good start for now. You never know what that boy will say!

a few Easter photos

These were the things our boys were excited about that were in their Easter baskets. We just had a couple of toys and some candy in each of their baskets. Gabriel was so excited about his hotwheels and candy (he had some as he was smiling). I could not get a photo of Micah looking at me. He was too thrilled about his fake Easter grass. He carried it all over the house, scattering it and giggling as he walked along. I'm sure we'll be finding pieces of it for weeks to come.

We didn't have a nice family pic of the four of us in our dressy Easter clothes. For one, a picture of the four of us has to be strategically planned. Also, we have not gotten into the tradition of buying new clothes for Easter, and I'm not sure we ever will. Not that there is anything wrong with doing that, we just never started it. At some point, I do want to get a shirt and tie for the boys because they haven't had one, and take some photos. I know they would look so cute!

Fun at the zoo

I'm backtracking a little bit, but these were pictures from our trip to the Tulsa zoo a few weeks ago. We met Grandma & Grandpa over there and were unpleasantly surprised by the very cool temperatures for a late March day. We were quite chilly for a little while, but it was bearable with jackets. We had a great time. We weren't sure how Micah would do with so much open space, flowers, and other vegetation. We thought it might be a long day of chasing him and trying to keep him from grabbing at things that were meant to stay on the zoo grounds. He really did well. He didn't seem all that fascinated with the animals. He is still just indifferent to them.

Gabriel loved looking at all the animals, but his favorite part was playing on the playground. He loves the little wooden truck. Micah enjoying riding in the wagon for some of the day, and that was helpful once he got tired of walking. I really only took one picture of an animal, and it was the river otter. It was swimming in its little pool until Micah starting making his "eeeee" noise. Then it stood up and was looking all around as if it were trying to figure out what the noise was.

Micah loved riding the train and was giggling almost the whole time. He also loved riding the carousel, but the train seemed to be his favorite thing.