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 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 ericasteele | Jul 7, 2012 | Children
This summer has been very expected and very unexpected in lots of ways.
We have had some lazy days, some super fun days and way too many super busy days.
We kicked off the summer with having our nurse of almost two years just up and quit on us.
Talk a about a shocker!
We love her and she had become much like family to us. I (Erica) really thought that we were on cruise control and all was just sailing along. Until, I got the call from the nursing company that she would not be coming back to work for us.
WHAT?? Are you sure you have the right lady?? I was speechless. Totally blindsided.
I am currently in school to become a midwife and was working with a midwife and had a very busy schedule. All of the plates were spinning, and I wondered which would fall first.
We tried to contact the nurse and apologize for anything we may have done, but we got no response.
Completely cut off from her life. It hurts my heart. Having people leave your life with no explanation is hard.
However, I am sure there is a bigger picture that we can’t see.
Just as God does, we had a new nurse that came to work the very next day. She has been wonderful.
She is genuinely concerned about Kennady and her overall wellness and happiness. They do therapy, read, listen to music and nap (well, not the nurse, but kenna).
I decided to step down from my apprenticeship for the summer. That plate spinning was getting to be a bit much and I figured it was time to put something down to make our family function better.
It was a hard decision, but I feel good about it. I am continuing with school, just taking a break from the hands on part for the summer.
Kenna chilaxin while her brothers pose
We have been swimming, going to the library and doing all the fun summer stuff we can squeeze in.
The boys may drive me a little crazy, but I love them being home.
the craziness inferred in the previous sentence
We are planning a trip out east (in a RV) and we are all very excited. I am pretty sure we will never want to travel any other way with our girl. I am just daydreaming about not having to have her wedged in her chair for hours on end only to have to unpack the whole back of the van to get her out and stretch her at a gas station. WHOO HOOO!
Just stop and stretch right there! WHAT!!
this is pretty much what I will look like the entire road trip if my husband doesn’t drive like an 89 year old grandpa
I am getting a tattoo.
Just kidding. I thought I would throw that in to wake any of you up that know me and are thouroughly bored with this post already.
Another invigorating experience this month was having a caseworker come out from the government to audit our case through the Medically Dependent Children’s Program. This program has us covered from head to toe with Kennady. All of her medical expenses, nursing care and respite care. It is pretty much the bomb.
I was panicked in lots of ways. I thought for sure they would cut off our funding and we would be back to the no nurse, no house help scenario of the past. AAAAGGGGHHHHH.
I am not a organized person by nature. Having people here to keep me afloat is essential to the health of our family and our marriage.
We have a wonderful lady named Juanita who comes and helps us during the week to take care of house stuff. Basically, she does it all. Then, we have our nurse who helps with Kennady.
We are super blessed to have this help. It is the only way I can go to school, work and be a sane mama and wife, and even then, I am not so sane some times.
I have had friends that say “man, I wish I had a Juanita”. I just tell them, “go get yourself a disabled child and you too can have help around the house”. Was that too harsh? Oops. It is really all in good fun.
So, the long story made a little bit longer is that the auditor came out and gave us the amazingling sweet, good, joyous news that we were not going to lose any funding!
I wanted to ask her to be my third grandma! She was just sweet.
You know, the no non-sense, “son, I am gonna give you something to cry about”, but sweet “do you need some cookies and milk to make it better” kind of grandma. I just wanted to hug her, but that would have actually been creepy and she may have revoked our funding, so, I resisted and instead piled on an excessive amount of thanks.
Robin and I have also been slowly been working our way through a bible study by Timothy Keller, titled Gospel in Life. Wow, it has been deep. Not one you can just breeze through and say, yeah, check check. It’s more like…
Ugghh, ooff, ouch. Then, re-read. But, amazingly good stuff. Life changing stuff. Wouldn’t want it any other way stuff. I am sure there will be thoughts on this one at some point down the road.
So, this summer has been full of fun and emotions and lots of stuff in the middle.
If I come up with other randomness, I will post it for your entertainment.
Blessings to you and yours!
+Erica
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by pastorrobin | Jul 3, 2012 | Children, random life
After our last post on “Curiosity is OK“, we had the question brought up: “What should you say or how should you ask questions about someone’s special needs child.”
Great question. Here is our stab at that question. Disclaimer: We only know our situation and personality. I am sure that other parents might feel differently. In fact, other parents that read our blog, PLEASE give us your input.
From our point of view:
- Genuine questions from anyone are better than long stares. It is ok to ask questions. It is awkward for everyone for you to stare long term. If your kids are staring at Kennady, it is completely appropriate for you to say, “She is different from us. Would you like to ask them how she is different?” At that point, if your child is interested (90% of time they are) you can approach the parent. If your child is not interested, you could end with something like, “Not everyone is the same. Some people can’t walk, others don’t talk well. Just because someone is not like us, doesn’t mean that they are bad or wrong or not ‘like’ us.” Teachable moment.
- Sincere heart. Whether you are with your kids or alone and you want to speak to someone with a special needs child, show your heart. Smile, be sincere. Most likely the parent of the child knows everyone is staring and is looking for people that will accept them and be interested in making them feel normal. Compliment them.
- Opening lines. Here are some ways to open the conversation. Of course these depend on your situation and the other family:
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- “Your family is beautiful…please tell me about your son/daughter”
- Offer to help if there is a quick need at the grocery store, bank, etc.
- “I would love to hear more about your son/daughter”
- Ask specific questions about the scenario: “have you found it hard to find parking spots” …
- Keep going. If you are flowing in conversation and you both have time. You can ask things like:
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- What are your biggest challenges?
- What is school like?
- How could our community help families like you better?
What if you say something wrong? Over the last 10 years, we have only found one statement that kind of gets on our nerves: “God only allows for special parents to have kids like these…” We heard that a lot from people early on (with the best intentions). After a while, we said, “We don’t want to be special. We would love to be normal.”
I wouldn’t try to give deep encouragement/advice unless you know them really well.
Just be friendly, interested, accepting, and helpful.
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Here is a blog by Shelley Colquitt
What People are Saying