by pastorrobin | Jul 24, 2012 | trip
Today, we had our first full day at the “Families for HoPE” conference. Families for HoPE is an organization for families affected by HPE (holoprosencephaly – Kennady’s condition)
They offer activities for the siblings and kids with HPE. They offer great information on medical treatment and research for the parents and care givers.
Right after Kennady was born in 2001, we heard of Dr. Max Muenke who was one of the foremost researchers for genetics in HPE. For years, we have looked had his research. Today, we actually saw him speak on the latest genetics testing and findings.
During the middle of his speech he shows this slide with Kennady’s life as an example of a child with the most severe type of HPE and how her face is normal. You can see her brain scan (from several years ago) above her pic. We were honored to be a part.
Several years ago, his team took our DNA and found that Kennady’s condition was a gene mutation (ZIC2) that began with her. This means that we would not pass this on to other children and more importantly that our boys would not pass it on to their kids.
Some other interesting stats about her condition:
- 1 in 250 embryos have HPE (98% of embryos with HPE end with miscarriage and most of these are before 4 weeks of pregnancy)
- 1 in 10,000 live infants have HPE
- 1 in 100,000 live births with HPE to be at least 1 year old
The fact that Kennady is 10 years old with the most severe type of HPE (alobar) is a miracle!
We had some music therapy today, but Kennady wasn’t all that amused by it! She slept most of the afternoon! Ha!
The singers and musicians were phenomenal with the kids!
“this is boring. i want to listen to Toby Mac!”
After the conference today, we headed to the theater and watched Ice Age 4! What a blast. We ate a lot of popcorn and drank too much Coke.
laying out on papa’s big belly
We would like to leave with you this special thought… our toilet was sort of blocked today so I (Robin) and Avery went into the woods to find a stick that we could massage the paper with and cause it to flow properly. I think we will not show a pic if that is alright with you. We are all good and going to bed now.
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by pastorrobin | Jul 22, 2012 | Children, trip
Giant peach on side of road
We drove to High Point, NC to spend the night with our dear friends, Michael and Annette Kelly and their very sweet kids. We love hanging out with them and laughing very hard at all our “church stories”. We pastor churches 1100 miles apart and there are so many things similar.
Central Triad Church in High Point/Winston-Salem
Sunday, we were given the opportunity to speak at their church and instead of Robin preaching solo, we decided to speak as a couple and tell our story about life with Kennady.
getting in and out in the RV with Kennady.
It was our first official time to speak like this and speak of God’s meaning throughout this process. Wow. What a great service. The praise and worship was anointed! What a great presence of God in that place. After the singing and offering time, there was a special guest singer that began to sing powerfully and people started coming to the front for prayer. We were introduced around an hour and a half into the service. (They are used to 2 hour services!)
We spoke about Kennady’s story. Pregnancy. Tests. Surgeries. We talked about the doctor’s comments. We spoke about the Apostle Paul’s “thorn in the flesh” and we also spoke about 1 Peter 4 suffering. God was revealed in the place and we ended with prayer for people. We brought Kennady to the front and gave people the opportunity to pray with her. What a great moment. Two kids came up and put offerings in her hands. It was so surprising. What makes a child want to give another child their money? God. For these two children, this is what was immediately available to them, when God gave them a compassion for another person, they responded. It really touched our hearts.
Kennady and the offering she was given
After a great lunch with our friends, we headed to Concord, NC.
I banned Robin from driving this afternoon. He ran over two curbs and barely missed a tree or two. I can only sit by quietly for so long (quietly is basically me not yelling, which does not exclude the occasional outburst of “what on earth!!” or “baby, watch the road!”)
We arrived in Concord at the Families for HoPE conference and were immediately greeted by a slew of handicapped vans! Home sweet home.
We got in the building and saw lots of other families just like us. It was so soothing to really, truly feel like we were just like everyone else for the first time.
There are 38 families here all with children that are currently living with Holoprosencephaly or have passed on. That makes for a whole lotta kids and parents.
One of the first things we got to do was go around and get to know everyone.
We all got together and took a giant group picture.
During the group picture, Kennady reached over and grabbed her new friend, Chloe.
We wrapped up the evening with a very touching balloon release to honor he children who have passed on. Each balloon had a name and a sweet note attached to it.
Avery finishing the milk off. mmmmm
We got back to our new campsite, got the R.V. all leveled, and set up for the night. The boys had their obligatory bedtime snack and then hit the sack.
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by pastorrobin | Jul 21, 2012 | trip
Today started (1am) with us getting a key made to our RV (if you missed that story, click here)
At 2am, we finally found a safe place to park our RV. We landed at a Wal-Mart in Northwest Atlanta. We slept until around 8:30am. Erica went into Wal-Mart and bought groceries. (This is Erica and I would like to have an official disclaimer that I only went into WM out of pure desperation. Thank you.) Then, we headed to our spot at the campground on Lake Allatoona on outskirts of Atlanta area. We were supposed to spend last night here too, but they locked the gate at 10:30pm and we couldn’t get in.
It was a very relaxing day! Swimming in the lake. Doing a few loads of laundry. Reading. Building a fire. Roasted Marshmallows and s’mores.
very cool, old-school lake front beach area
Fan the flame!
the smoke stinks
He insisted on wearing his shades to protect his eyes from the fire 🙂
That’s a happy boy
mmmmmmmm! That’s what I’m talkin bout!
Kenna chillin’ on the couch
We capped the night off with a good ole fashioned game of Skip-Bo. As a parent/grandpartent there is this unspoken rule that you should always let your kids/grandkids win. I say, kids need a good dose of reality, they can’t always win. But this time, I really wasn’t trying to administer said dose of reality, I simply won by pure luck. There you go folks. My kids didn’t even cry about it like my husband did.
So, just before we started our game of Skip-Bo, Jude comes out with multiple pairs of socks on. This R.V. is 32 feet long and only 18 of that has linoleum on it. But leave it to the boys to turn their super padded feet into skates. Avery jumped up within seconds and donned at least 6 pair of his own, so that they could skate together.
After their skating duel, I walked back to find Avery kicking Jude and declaring, “look mom, I can kick him and it doesn’t hurt him!” Oh the joy.
Boys’ 10 layer socks
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by pastorrobin | Jul 20, 2012 | trip
Oh. My. Goodness. This day will go down in our history.
I (Robin) had a training day with Tony Morgan. He works with pastors and ministry leaders to help them develop as leaders.
here we are training.
So, while my husband was training, I was packing up the kids and getting the R.V. ready to go to the Morgan’s pool in their subdivision. We got everything all in order and headed out. About 5 minutes into the journey Jude starts scrounging around for something to drink.
What happens when you combine these three things?…
A thirsty child
A moving vehicle going around a curve
A thirsty child opening a refrigerator with a pitcher of formula in it
hmmmmmm.
Ah, you have already found the answer. The next thing I heard was “mom, come back here now!” I very quickly replied “I can’t, you are going to have to clean it up”. The boys got after it and got it done!
We got to the pool and started getting ready when I realized Kennady’s extension tube for her feeding pump had come off and was leaking onto her blanket. As I started cleaning it up I realized her diaper had leaked too!! What in the world. When it rains it pours! So, needless to say, we were ready to play at the pool and relax a bit.
Here is what Erica and the kids did while Robin trained!
The kids and I (Erica) hung out with Emily Morgan and their two youngest girls at their super awesome pool. The moms had a great time chatting while the kids swam laps around us. We are so thankful for the Morgans and their generosity! Not only did they have us over to swim, but they let us use their van too! Awesomness!!
Avery went down this super cool slide.
Then, we headed to downtown Atlanta to visit the Georgia Aquarium. We were very excited to get to go to the aquarium, the kids had just recently seen a special on T.V. about it being one of the largest aquariums in the world! We were anticipating bad traffic on our way in, but it actually wasn’t too bad. Check this out, 14 lanes of traffic! (but that only lasted about 5 minutes for us)
When we arrived at the aquarium, we started unloading from the R.V. and realized that we had left Kennady’s wheelchair at the swimming pool! What a disaster. Of course, Erica (being the trooper she is) said we should borrow one from the aquarium. Thankfully, they had extras. So, I carried her several blocks to the wheelchair and then she toured the place in a massive chair. Erica and I traded off turns holding her and getting pushed around.
Not sure how Robin got first dibs on sitting with Kennady while I pushed him around!!
Amazing whale shark
We saw all kinds of cool fish and sea animals. The boys were able to touch some stingrays and hammerhead sharks.
As we left the aquarium, we had to leave the chair there, so I (Robin) started carrying Kennady 4 blocks back to the RV. About half way there, I realized that I couldn’t feel the keys in my pocket! They had fallen out of my pocket! We started searching the ground all the way back to the R.V. At that point, I (Erica) took the kids and Robin headed back to the aquarium to do a search there.
Lucky for the kids and I, we were sitting right smack in the middle of Centennial park!
Within 5 minutes of being there, we heard an announcement saying that the show would begin in 90 seconds. How fun!
The fountains then became a light/water show that was choreographed to music. Very cool.
When the show was over the kids went crazy and played in the water with all the other bizzilion children. It was a fun time for all. Kenna and I hung out on the sidelines and waited for Robin to return. That didn’t happen for another hour and fourty five minutes!
The kids thoroughly enjoyed the water
Kenna and I chillin on the sidelines
The boys were doing one armed push ups/no arm push ups? This sweet little girl in the back joined in with them
And this is what an R.V. looks like when you can’t get into it. (pretty much like any other R.V.)
Robin never found the keys so he called a locksmith and he picked the lock on the outside door within about 20mins. However, he couldn’t make a key for the ignition. We called another locksmith and it took him about 2 hours to get here.
At this point it is ten minutes until 1 a.m. here in downtown Atlanta and we have the keys to the outside of the R.V., a generator that is running (Thank you Jesus!) and a man working on getting us a key for the ignition.
We were supposed to be sleeping at the camp ground tonight, but we had a little setback.
See ya tomorrow folks.
UPDATE (Friday)
We had a key in hand at 1:30am. We drove to a Walmart and camped out there until 9am today.
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by pastorrobin | Jul 19, 2012 | Children, trip
Avery fell out of the top bunk twice on night 1. At the beginning of night 2, we asked him if we wanted a board added to the bunk to keep him in or would he rather fall out. He said he would rather fall out so we loaded the floor with pillows and he never fell out last night. Love that attitude!
We hit the road and headed to Montgomery, Alabama.
That was the half-way mark in our day’s journey and we wanted visit some of the historical parts of the city. Little did we know how much civil rights history was in that one spot. Wow. It was a great opportunity to tell our kids the dark history of evil and the bright spots of Grace that showed up in Rev Martin Luther King Jr and so many others.
Here Robin is trying to bring up the topic that ‘a lot of white people were mean to black people’
This took our breath away. Water pours down this fountain. Beautiful.
I (Robin) did not realize how dark and twisted that part of our history really was. I generally knew what happened, but to see the actual spots where it all went down brought it to life.
Here is the church where MLK pastored:
We toured the home where MLK lived while he was pastor. We got there about 4:05pm. I want to give you the dialog of me and the lady at the desk.
Robin: “Hi, is this the entrance to the house museum?”
Lady: “Yeah, but it’s after 4pm, so what’s going on here?”
Robin: “Uhhh…”
Lady: “Do you have reservations?”
Robin: “No, I’m sorry, I didn’t know you had to have reservations.”
Lady: “You don’t, but we close at 4pm.”
Robin: “Ok, I’m sorry, we didn’t know.”
Lady: “Where are you from?”
Robin: “Austin, TX”
Lady: “Ok, we can give you a 5min tour, I don’t want you leavin’ and thinkin’ you were going to get a tour.”
We were very grateful! We had a very quite, private tour with a nice gentlemen. It was quite and peaceful. Intimate. It had a classic (good) old house smell to it. Most of the furniture was authentic King owned. They even had Life magazines and sheet music from the family.
This table is where he met with other leaders and made plans for marches and other parts of the movement.
Here is his kitchen where he had a revelation from God and had the peace to move forward knowing that death was eminent. He received around 40 death threat phone calls a day!
Then, we headed for the Atlanta area were we will spend the next 2 days.
The boys were PUMPED up about the season premeire of NINJAGO tonight. They were able to watch in the RV as we drove down the road. It has DirecTV. So sweet.
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by pastorrobin | Jul 18, 2012 | trip
Gulf Shores here we come/came/are going/went/left. None of the previous line should make any sense, so just disregard it.
We had a great day.
We got up early and left the Lejuenes’ house and hit the road.
Robin said “it’s not too far, probably 3 or 4 hours” which I then relayed to our children.
Do you see what is coming here? If you do the math, and look at the map, you realize that it is not exactly 3 or 4 hours but more like 6 or 7, which to a 6 and 8 year old, is about 300 more “are we there yets??” UGGGHH.
Here is a picture of our youngest trying to drink the hours away.
Very cool tunnel. Seems like we should have seen Will Smith and Tommy Lee Jones cruise by in their sweet black car.
Awkward photo op with me applying sunscreen on Kenna.
Absolutely the best picture of the day. <3
Our spot for the night. (about half mile from beach)
Dinner’s served! Everyone else managed to get rinsed off and in a new change of clothes except mama. Not really sure what my son is doing in the background, it may be some sort of gang sign, but it looks more like the walking dead.
Tomorrow, we head to the Atlanta area!
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