A Little Embarrassing

It's a little embarrassing that I haven't blogged in a while.  Obviously, it's been a busy summer, right?  I will blame it on that.

I can officially say at 6:00 p.m. this evening this household is done with summer travels minus a little vacation Nate and I are taking in two weeks.  Nate is on his way back from STL area where he led worship this morning for his mentor.  He texted me before the third service this morning and said to pray for him.  His voice was totally shot and could barely talk.  He coated his throat with more ginger tea and honey and finally got it working a little better.  It looks like voice therapy is in the near future again.

We just got back from Student Camp.  I think this was my 14th student camp I have attended.  The theme was "My Everything."  This was the best student camp yet at Ridgecrest Baptist Church.  We are excited about going back to student ministry full-time and embracing what the Lord has.  Lots of changes in our church are happening but I can see God in all of them.  

 Lake time with Matt Atherton (camp speaker and college friend)

Boys will be boys

 Best roommates ever

Our 14th student camp together

Hope for an Autism Day

As I read this post, I thought about how much I could relate to this mother.  I will always remember that the Lord chose Nate and I to parent Landon.  Some days I like to get sad and upset, but I always come back to the Lord being faithful through all of it.  I can see the Lord's hand over our family in so many areas.  Maybe one day I can write about that.  

My husband I have a code for our hardest days of parenting a child with special needs. We call them autism days. It's an autism day, I say, and he instantly knows everything there is to know about how I'm feeling. It's shorthand that I'm sad and perhaps a little tired but mostly just sad. It's a sensitive sadness, a familiar sadness, like a wound that's mostly healed and often forgotten, but unexpectedly gets reopened.  Oh yes, I tell myself, I forgot. This isn't going away.


On Friday, my son finished a week at camp, which in itself is a feat of God's grace and a testament to where we are and to where he's come. I went to collect Will and his suitcase of stinky clothes at camp, arriving in time for singing and cabin awards. While the entire camp, stuffed into the dining hall, sang and cheered, we parents stood with our noses pressed into the screen windows trying to catch a glimpse of our children belting out worship songs. I found Will immediately and marveled as he participated in the hand motions and chants.

The worship leader called out the name of the last song before the campers dispersed for cabin awards: Lean On Me. Initiating the ultimate Christian camp experience, he urged all the campers to interlock their arms and sway as they sang. Will's fellow cabin mates enthusiastically obeyed, and Will, standing in front of them all, tried to get into the chain of boys, but they refused his entry. He tried again but was denied a second time. Finally, he put a hand on the shoulder of a girl closest to him, who looked at him nervously and started uncomfortably giggling.

Will's face said it all. He knew he had been left out. He knew it was an awkward moment. And he knew that he had done something wrong socially, but didn't know what it was. He looked toward me with flushed cheeks and tears in his eyes. I smiled and gave him a thumbs up, wanting instead to reach through the screen window and fold him into me.

And there it was--the familiar sadness. I knew I would have to wrestle with it in my heart the rest of the day. Though the song was a small thing and could likely be explained away, those small occurrences and difficult days are like keys to Pandora's box for me. Pain and suffering take me deep into the recesses of my heart, my theology, my faith, and my perseverance. Autism days provide me opportunities to straighten it all out once again, like ironing out the wrinkles after every laundry cycle.

On the ride home, I listened to his stories about camp, which took approximately three minutes. We played the question game, where we took turns asking each other questions, primarily so I could get more out of him. He asked me trivia questions from our Bible on CD, and I asked him how he felt during the last song. Embarrassed, he said. Everyone gets embarrassed, I said, and I told him times that I'd felt the same way. You know I love you? I asked. Yes, he said, and then we were silent.

As we drove on, I let him play his coveted video games, and I listened as David Crowder sang on my headphones: Wherever you've been, He's been there. The words stood out, but a part of me rose up, bucking the truth of that statement. I'm sorry, God, but have You really been where I am? Have You parented a child with special needs? Do you truly know what it's like?

He spoke clearly, with grace and empathy, into the deepest parts of my heart: I have not parented a child with special needs, but I know how you felt today as you watched your son. I watched as My Son was bullied, humiliated, misunderstood, mocked, physically tortured, and murdered. My dear, precious Son, was rejected before My eyes. I know that sadness and can empathize with you. You do not walk this road alone.

I remembered then that the Father and the Son were able to endure such difficulty because of the outcome, because of the joy set before them. Perhaps I could endure as well or, even better, embrace this road I'm walking, for the joy set before me.

I reached to touch my son as my comforted heart simultaneously bowed in surrender to my Father. With hope from a Father's heart, He re-bandaged my wound.

A Birthday to Remember

Liam is two!  I can't believe it.  It really has gone by so quickly.  I remember Liam being born vividly.  He was a month early and was a big baby.  Eight pounds, ten ounces.  Beautiful, big baby.  

The first thing Liam said to me when I got him up on his birthday was "birthday cake!"  I guess he had been dreaming about it.  Nate and I took him to lunch.  Nate bought his own little individual cake.  We sang Happy Birthday very quietly and he blew out the candle.  I remember blowing was so hard for Landon at that age.  I remember putting cotton balls on our table and would practice blowing them across the table. So, to see Liam do that was amazing to me.  Oh, the little things.  

When we got home from lunch the school nurse called.  She said that Landon had fallen off the monkey bars and was hurt.  She couldn't tell if his arm was broken or not.  When Nate went and got him he was just crying and crying.  One of the para professionals was just holding him.  Poor guy.  Nate took him to the ER and after many x-rays it was determined that it was broken.  He gets his permanent cast on tomorrow morning and will have that for six to seven weeks.  Welcome to summer, right? 

A Fragile X Post

This is a blog post from a friend who has three kids with Fragile X Syndrome.  One boy and two girls.  This is what happens sometimes to our kiddos.  Not a fun experience.


I know this title has nothing to do with my surgery.

But, in a way, it does.

Read on.

We have received so much help while I have been down post-op. We've had meals brought in, caregivers for the kids and family to care for me.

We are so grateful.

But, we also tend to feel a bit guilty and try to do what we can on our own, so when we realized that Baby still needed her prescription filled for her sinus infection we thought that I would be able to handle Baby and Brother at home while Marc took Sister with him to Harmon's to get the medicine. Harmon's is a grocery store with a Pharmacy inside and Sister LOVES to go to the store.

While I was here at home helplessly listening to Baby attack Brother downstairs I kept trying to muster up the strength to walk down stairs and see if I could bribe Baby away from Brother because I knew I would be able to do the usual "heave, ho" of lifting her up and off and away from the temptation of pulling his hair and biting his shoulders. But, I didn't have enough strength or will power so I just listened to him whine hoping he would finally get his whits about him, stand up, pick her up and bring her upstairs.

Thankfully, he did.

He came upstairs with Baby in his arms, face reddened and a look of exasperation... and pride. He was very proud of himself for handling the situation on his own. I was very proud of him too.

I told him to bring Baby over on the other side of the bed with me and maybe I could get her to watch a movie with me or something.

Brother went back downstairs and I was getting a movie ready on my laptop to entertain Baby.

But, Baby hasn't been able to have access to "attack" me for at least 3 days and just couldn't resist any longer. She went for my face first and I was able to hold her off a little while I was trying to get the laptop off my lap so I could get in a better position to hold her off and then she noticed my weakness and started going at me full force, teeth bared and legs flailing.

I could feel my stomach muscles straining trying to to keep her from hurting me but I can't sit up like usual and have to roll to my side to get up so, of course, she held on tight as I rolled to my side and then because of her extra weight I couldn't get up. I started to panic because of the pain and I didn't want to ruin any of the work that had been done so I reached for my phone and tried to speed dial my neighbor and there was no answer.

And you have got to remember that I have a "piranha" child on me this whole time.

I finally get her off of me, don't even remember how, I think I did some sort of dive-roll off the bed thing and then decided that laying down while I was alone with her was not a good idea. So I sat at the kitchen table while she ate some cookies and I waited for Marc to get home to relieve me from the experience of being home alone with Baby... (Really how do you not laugh when you reflect on how crazy Our Life can be at times? Like "home alone with Baby" should ever cause any worry... tee hee!)

I see the red car pulling up to the garage and a wave of relief flows over me.

Then, I here the blood-curdling screaming come from the garage up the back stairs.

Sister comes in red-faced and crazed screaming that her umbrella is broken.

???

(Side note: Sister loves going shopping with us, but sometimes we forget that that means she loves shopping because she thinks it always means she gets to buy something.)

Marc comes in looking a bit frazzled yet calm.

He was trying to explain to me what had happened but, Sister's incessant screaming didn't allow for a friendly adult conversation so we just moved on to the process of calming Sister down which entailed swinging in the hammock, rubbing her face and rocking and reading.

Marc was finally able to tell me about his experience with Sister at Harmon's.

He went straight to the Pharmacy and gave them the prescription and was told it would be 15 minutes. So he and Sister wandered about the store just "shopping" around (because that is what Sister loves to do) and Sister found an umbrella that she liked. Marc made sure to inform her that they would not be buying it, but they could still look around and spend time together while they waited.

Finally the prescription was ready and they went to pick it up and then leave.

Sister would not leave without an umbrella.

Marc said they could go pick out a treat instead.

They walked to the other side of the store to get the candy all the while Sister is holding onto to "her" umbrella desperately yelling that she wants the it. By this time they have drawn a lot of attention at the store. On-lookers wondering what is going on.

Marc tells her that she needs to put the umbrella away and she can choose to have or not have a treat instead. She is still yelling and screaming and stomping and flailing. He sees that there is no talking any sense into her so he calmly takes the umbrella away from her and picks her up and proceeds across the store to the exit.

All this time she is hitting him, kicking him and then she grabs the sunglasses off his head and throws them to the ground. He calmly picks them up and puts them back on all while holding her during her fit.

Then she grabs his sunglasses again, but this time, twists them in from of his face until they break and then throws them on the floor.

Marc again, while holding her, bends over and picks them up and throws the pieces in the garbage on the way out the door.

She is still screaming once they get out to the parking lot and trying to run back into the store to get her umbrella while he is trying to unlock the car.

She won't cooperate getting in the car so he realizes this looks pretty strange as he is trying to shove her into the car and it wasn't helping her calm down so he takes her in his arms, sits in the front seat and rocks her till she calms down.

As he is rocking her two store employees approach him and tell him how impressed they were with how calm he stayed during the whole ordeal and also expressed to him that there were some patrons who were asking the employees to call the police because of the disturbance. So, I guess the employees came out just to double check to make sure that Marc was not a kidnapper or abusive. I am still impressed with how calm Marc is about the situations with the kids. It is not easy.

I am sure people at the store did not know what to think of the situation he was having with Sister. I am positive that it just came across that she was throwing a tantrum about not getting an umbrella that she wanted. They have no idea, in general, that she is perseverative and does not understand, fully, the world around her.

I am sure that most people who witnessed the occurrence will just rehearse it to others as a severe tantrum and not as a overstimulated, hyper-aroused and out-of-routine-while-her-mother-is-re-cooperating-from-surgery individual with Fragile X Syndrome. That's why I wish, so badly, that we could raise more awareness about Fragile X Syndrome and the affects it has on different people.

So, both Marc and I had a our fair share of frustration last night and we both came to realize that we do need the help while I am healing. I just hope that I heal a lot faster than I seem to be.

I will post soon more positive experiences (because there have been many), I just wanted to write this one down before I forgot and I can finally look at the computer screen without seeing double (smile).

Story Time/PTA/Small Group

Last Wednesday my friend Emily invited us to Story Time at Wanda Gray Elementary.  Parents as Teachers puts it on once a month and did an amazing job. I was very impressed with how organized and creative it was!  Liam had a blast making a Mothers Day card and being read too.  It's nice to take a break from my normal morning routine and do fun things with Liam.  He is so eager to learn and is soaking things up right now.  

Tonight is my first PTA meeting.  I am a little nervous.  I don't really know why since I am not in charge yet.  Ha!  Afterwards the principal and I are having dinner to discuss future plans for the upcoming school year.  I am ready to embark on this new adventure.  It shall be interesting.  

Last Thursday we had a wonderful small group.  We have started reading The Story.  It is basically the Bible in story form.  I am learning a lot!  The discussion was wonderful and we had a lot of great input.  I am excited to continue learning more.  On a funny note, Nate fell out of his chair as he was introducing himself to someone.  Highlight of the night to say the least!  

  

Easter 2012

He is Risen! I loved seeing those three words on Facebook this past Sunday. That was also Landon's Bible verse this past week. He was saying it while skipping to the car on Sunday after a wonderful service. Music to my ears!

My parents were in town, aka Gigi and Papa. Landon and Liam love them so much. I asked my Mom why she thought the boys adored them so much when they only get to see them about every six weeks or so. She said something that was so true. She said it is the way we talked as parents about them to them! I am ALWAYS talking to the boys about their grandparents. I had a very sweet relationship with both sets of my grandparents growing up. They were so special in my eyes and still are to this day!

Ministry Thoughts

“Servants…don’t just do the minimum that will get you by. Do your best. Work from the heart for your real Master, for God, confident that you’ll get paid in full when you come into your inheritance. Keep in mind always that the ultimate Master you’re serving is Christ.” Colossians 2:22-25

Often ministry can lead to burnout. One minute you are rockin’ and rollin’ influencing, mentoring, serving, speaking, writing, emailing, etc. The next minute, you are slap dab in the middle of, what I call, a “ministry muddle.”

This is when we become ineffective because we take our eyes off the prize. Doubt seeps in and we start asking, “Is this really what I am supposed to be doing? Lord, I think you may want to rethink this one.”

Here is what I know I MUST do to survive the calling of ministry? (And believe me, it’s a calling.)

Block out time to retreat from the noise. That can mean a number of things, including going into the bathroom, turning on the fan, and asking God to direct your thinking, sitting on the floor of your closet…with the door closed, sitting in your car in the garage (with the engine off!), any place where you can be alone with your Creator.

Even Jesus retreated from the crowds. He withdrew to spend time with the Father. Rest assured that unless you take some time to retreat and find rest in the Father’s eternal promises, your vision will become blurred and your mission skewed.

God does not call for perfection, He calls for action. Faith in action. Don’t get so distracted by the earthly master, the people you are serving, that you lose focus on the true Master. He has created each of us with such great purpose and worth. If only we could see a fraction of what He sees, we would be overwhelmed (in a good way.)

Do your best and then take time to rest. Invite the Father into every part of this day, knowing that He is more than capable of exceeding our expectations in using us to further His kingdom. Perfection is not required or accepted, just willingness and availability.

The Boy is on Spring Break

Landon, my big Kindergartener, is on Spring Break. While the weather hasn't quite cooperated, we have still made many plans. Today he is playing with his friend Brooklynn. They are headed to Jumpin' Joey's and out to lunch while the rain keeps them from playing outside.

Nate took the morning off yesterday and we enjoyed a few hours with him. My boys are all about their Daddy. He can do no wrong in their eyes. It makes my heart completely happy. We made our fruit smoothies and got ready for the day. We didn't tell the boys where we were going as we told them it would be a surprise. Landon kept guessing where we might be going. It was hilarious. I kept asking him where he thought and he of course was naming all of his favorite places. He did guess it but we didn't confirm until we got there. It was Bass Pro! Landon and Liam both love this place and could spend hours and hours there. We look at everything and learn about everything. I think Landon thinks we are going to purchase one of their boats for him someday. Hopefully he won't be too disappointed.

I did accept the PTA president position. It is going to be a stretch for me but I feel like it is the thing for me to do. To be honest after learning about what PTA is, the responsibilities, etc. it made me want to say "heck no!" Nate quickly reminded me what I had been praying about. I had been praying about helping Landon's school in anyway I could. There didn't seem to be any needs at the time until this. Obedience is the word that I am proclaiming right now. So, if you are like me and used to make fun of PTA Moms, think before you speak. You might be one of them someday too.

Springfield P2G Conference/PTA

This year’s Springfield P2G Conference was held last month and brought together principals, counselors, assistant principals, teachers and community organizations interested in helping the district. Together they discussed strategies used by each of the 52 schools to keep students engaged, motivated and on track to graduate with their classmates.

Nate and Landon were asked to be a part of the closing video for this conference. Here is the link. http://springfieldpublicschoolsmo.org/board/VideoArchives/2010-2011/Dr.NateBock-P2GConference.html

We love Springfield Public Schools and will continue to support their principals, teachers, and therapists.

I got to meet with Landon's principal today. She stopped me yesterday as I was picking Landon up for school and asked me if I would be interested in being the president of PTA. My first initial thought was to laugh. I remember making fun of PTA Moms when I worked full-time. I even remember myself saying I will NEVER be one of those. I think it is funny how God directs your life. We are going to pray about it over the weekend and see what we feel like the first part of next week. Until then....

Life

Where to begin?

We have enjoyed some fun times lately as a family. Last weekend, Nate was asked to speak at a student DNOW weekend in St. Louis. We decided to go as a family and stay with my parents. While Nate was slaving away, Gigi spoiled me and the boys. We went to Chesterfield Mall and rode the carousel and ate at The Cheesecake Factory. I always enjoy the Luau salad. So yummy. The boys were very well behaved and thought they were big stuff riding in Gigi's new car. I am so thankful for the wonderful grandparents the boys have. Grandparents were very special to me and still are to this day. It is really neat to see the sweet relationship.

Liam has been under the weather so I finally made him an appointment to see the doctor today. Turns out he has bronchitis. :-( Nothing Amoxicillin won't cure I hope. He has had that lingering cough for two weeks.

Landon has had a great week at school. I am happy to report he has had three sight word spelling tests and has not missed one yet. I am so proud of him. He has come so far and is very eager to learn. My prayer is that it stays that way. We enjoy practicing our words every night after dinner together.

Tonight we hung out with some of our high school students. We have really missed doing this. Since Nate has been asked to lead worship for our modern service, it really takes away a lot of time with our students. The Lord has been pressing upon my heart to start teaching again. I miss my girls. I miss those relationships. I am continuing to pray through this.

Thanks for letting me ramble. Time to get back on Pinterest. Man, that is addicting.

The spelling words in order are and, can, the, me. He doesn't have the best handwriting. Such a boy.

Valentine's Day/Landon's 6th Birthday

Six years and one day ago was Valentine's Day in 2006. I remember I was so uncomfortable being 9 months pregnant and not wanting to do much for Valentine's Day. I remember we went to Brio on the plaza in KC to eat. I had major heartburn the rest of the night. The end. Fast forward to about 2:30 a.m. February 15th. I got up to go to the bathroom and it kept coming and coming. I thought it was never going to end. I got to thinking this wasn't normal. I went back to bed thinking it was just my imagination when all of a sudden more liquid starting coming out. I immediately went back to the bathroom and my water had broken. For some reason I was very calm and wasn't in a rush. Not usually the norm for your first pregnancy. I told Nate I wanted to take a shower and get ready. So, after about an hour we thought we should probably start heading down to St. Luke's on the plaza. I knew I was going to have a c-section because Landon was frank breech and couldn't be turned because of his size.

It didn't take long for the doctors to prep me and check me. I was dilated to a 3 but that really didn't matter. I was actually pretty calm and tried to soak up everything and remember every little detail. He was born and was a beautiful, healthy baby. 8 pounds, 9 ounces and 21 inches long and almost three weeks early. We were very excited to be on the journey of parenthood.

Today we celebrated Landon turning 6! We are sure proud of him. He is talking and learning how to read and spell. He is doing amazing. He had an amazing party with his good friends at Dynamic Gymnastics last weekend. He greeted everyone by name and gave hugs to everyone that came. So hilarious and sweet! As I think back to this day six years ago, I feel the same way today as I did then. #blessed

During School Hours

Liam and I have a lot of fun together while Landon is at school during the day. A typical day is going to the gym, coming home to eat a snack, and watching PBS while I get ready for the day. Some days we have a lunch date with our friends. Other days we just like to stay home and make a mess in the house. He is growing up so fast and I am learning to enjoy our time together. He typically goes down for his afternoon nap between 12:30-1:00 and sleeps until 3:15 or so. I find myself enjoying that quiet time a little too much. If I sit down it hinders my motivation so I try and keep moving with house chores. I am the cleaning lady so my job never ends. Here are some pictures of what our days are like during school hours.

First haircut!

Lunch date with our friends Ellie and Hayley

Playdate with our friend Aiden

Liam playing

Naptime!

Sometimes I Forget

Sometimes I forget our world probably isn't the normal to most families. Do most families know all the details of an event to prepare their child? Do all families do a picture schedule of the days with their kids? Do all families do a sensory diet multiple times a day to help them feel normal inside? Do all families pay a lot of money for extra therapies for their child? I sometimes forget that isn't the normal. For almost six years that is all we have known and will continue to know. Once our second son was born (not a Fragile X Carrier) I finally understood what it meant to NOT have to do those things. What I thought wasn't normal was actually normal. It took me a while to understand that Liam was able to do things that Landon would have never done if he wouldn't have been in extra therapies, been prepared by us, etc.

For me, having a child with special needs is normal and having a child without special needs is normal. We once did a video testimony about our journey through parenthood. I stated that having a child with special needs made me grow in so many ways that are uncomfortable for most people. I will admit, it was uncomfortable for me at first too. I didn't like talking about Landon's needs, I didn't like admitting he was special needs at first, and I didn't want anyone to see that he was different. Until that one day a good friend of mine sent this little story to me.

Welcome To Holland


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

My Weeks in Photos

To say that I have been a blog slacker would be a correct statement. Time gets away from me and before I know it I haven't updated! I will show you what we have been doing around here.

I went and watched my friend Abi coach her Basketball game. She did a wonderful job!

Liam and his BFF walking one day after lunch.

Toddler fit. Enough said.

Liam and Addison playing so sweet together.

I guess he likes the older girls. :-)

Breakfast at Gailey's with staff wives.

Landon started swim lessons. Loves it and did amazing.

Me and Shallina at Haruno.

Kick it up

After weeks of aching ankles after aerobics class, I finally got a new pair of kicks. It's amazing how fast your tennis shoes wear out. I decided to go with the same brand that works for my feet. You can't go wrong with bright orange Saucony tennis shoes. People will know I am coming, right? Nate was a little surprised I picked that color, but I was tired of boring.

I have also been enjoying more of this. (see picture below) We add this to our smoothies in the morning. I have tried a few smoothie recipes out there but we finally have perfected a good one. I am full until lunch. I used to get hungry around 10:30 a.m. but the smoothie holds me over until lunch. Here it is.

1/2 cup plain or vanilla organic yogart.

1/2-3/4 cup spinach leaves. (more if I am making it)

1 banana

1 cup frozen berries

a dollup of honey

a big spoonful of protein powder

1 tbsp chia seeds (sometimes)

This morning we woke up to this. (see picture below) The high today is 26! Brrr! It's cold!