Difficult Discussions
Sunday, we got the devastating news that our neighbor was killed in a motorcycle accident. We have known his family since moving into our neighborhood in 2009. He was always nice to talk to.
They always have the most lights in the neighborhood. A sight to see!
His grandkids live with him and his wife, so naturally our kids often go over to their yard and play. They also often walk to school together.
Last night, Erica and I had to talk with Jude and Avery about the whole scenario. We were eating around the dinner table. Laughing and joking around about the day. We joke so often. In fact, our kids’ sense of humor is even stronger than ours. So, those of you who really know us know that is a lot of humor. Anyway, it was difficult to get the conversation to a point where we could break the news to them. I said, “Guys, I have to tell you some sad news.” They both started smiling. “No… this is serious.” Erica chimed in to help settled the tone, “Guys, this is really serious.” They both settled and got a serious look on their face.
I didn’t realize how difficult it would be to actually tell the very short story that we had been told. Their faces were so solemn. It is difficult for us to expose something to our kids that will break their heart. We want to protect them everyday from anything troubling. However, life often hits us hard. We have to learn ways to reveal truth. These are situations where we can all learn to trust in God and ‘lean on him’.
“Guys, Mr Johnson was in a really bad accident on his motorcycle and he didn’t make it. He died.”
Both of their faces sank. They slowly started eating again and there was silence for a while. Erica said, “Do you have any questions?” Jude wanted to know what actually happened. We didn’t know the details so we told him that. We discussed it a bit more and Jude finally said, “I am having trouble processing this.” (He is 8yrs old)
We all are looking for ways to process difficult news. What is our frame of reference? Do we see life ‘with windows’? Or do we see this life as the end of everything? If we view life with windows, then we understand that this life is important, but it is not the only one. During our life, we look out spiritual windows and see glimpses of eternity. The windows allow us to have hope that at the end of this life (when we walk through the door of death) we will move to another world. Without these windows, we live in a dark existence. Fearful of every move because it could be the last of everything.
Viewing the world with eternity ‘windows’ doesn’t make all the pain of death go away, however, it gives us a frame of reference. A way to process. We pray and then the Spirit of God brings comfort.
Friends of the heart
Although we don’t know the Brown’s personally, we know the Brown’s. We know the weight that they carry and the hope that they have.
Their sweet baby girl Pearl is changing the world.
Pearl and Kennady have the same diagnosis and the same fighting spirit. We have been honored to meet them through texting, tweeting, and phonecalls.
You can follow them on their journey here. Here is one of the Brown’s most recent interviews. via East Nashville Baby Gains International Recognition.
I Want To Be Like You
When Erica and I decided to have kids again after the long journey of Kennady’s infancy, our first thought was…will our next kid or kids be like Kennady? Of course, the key factor we were considering was her disability. Will they be born like her?
Little did we know that 10 years later we would value ‘likeness’ more than almost anything.
Two years after Kennady was born, Erica gave birth to Jude Alen and then 2 years later came Avery Harrison. Both boys with normal boy brains. This meant that they would not be ‘like’ Kennady. Instead, they would be ‘normal’ and a separation would begin between them and their sister. The separation would grow stronger and stronger as they grew up because they would cross all the developmental milestones and with each one, leave their sister’s commonality. We are not sure how much Kennady knows about her differences. In fact, we don’t think she knows a whole lot about it. However, the boys sense their differences from their sister. The only thing that has kept them similar is their toes. That is right. Toes.
They all three inherited ‘twin’ toes from my mom’s family.
top toes are ‘twin’ (connected more than other ones)
That was until last week.
As many of you know, our 2 boys suffer from severe food allergies. In fact, if either eats eggs, he will break out in severe welts, breathing will be restricted, etc. Jude is also allergic to wheat, soy, and nuts. This has defined a huge part of their life. In fact, they have suffered some socially because they can’t eat: cake, pizza, cookies, peanut butter sandwiches, and almost any other food at a birthday party. This has caused them separation or isolation from their friends and other family. It’s not easy to go to a 8 year old birthday party and not be able to enjoy the food and sweets.
Last week, Erica went to school and saw Kennady with a large, red breakout on her hand.
She asked her teachers if she had been bit or stung or hurt in any way. They said that they had not seen anything happen to Kennady from injury or insect. They said, “the only thing we did was cook with eggs… Kennady helped us crack eggs and some got on her hands.”
That brought us to one obvious conclusion. Kennady is allergic to eggs…Like our boys! How awesome is that? They are like each other. They are in the same club. They relate to each other.
We couldn’t wait to tell the boys. You should have seen the look on Avery’s face when we told him. His eyes got huge. His mouth dropped open with a big smile. Jude said, “Really?Yeah!”
I think of Adam when he woke up and saw Eve. He said, “”This at last is bone of my bones and flesh of my flesh” Finally, he had someone to share his world with. Someone that talked back. Someone that walked and understood life like he understood life.
Ironically, with our kids, their common ground is actually an inconvenience, but how comforting is it to know that you are sharing life people that understand your pain?
How I Introduce My Kids
Whenever I (Robin) meet someone new, they always want to know how many kids I have. That is normal. I want to know about their kids as well.
“I have a 10year old girl, 8yr old boy and a 6yr old boy.”
After I say that sentence, I always wonder when the appropriate time is to say that my 10 year old has significant disabilities. (Obviously, this conversation is happening when my kids are not present.) You might think it is not necessary to talk about Kennady’s disability. I used to think the same thing until she was about 6 months old. After kids naturally pass developmental milestones, those milestones create great little talking points.
For example: I would tell people, “My daughter is 1 year old.” The natural response to that from others was, “Oh, I bet she is into everything! Walking around. Is she saying any words yet?”
At that point, I would have to awkwardly tell them, “Well, my daughter was born with a disability and she is not rolling over yet.”
As Kennady has gotten older, the typical milestones change, but the conversation does not. If I don’t address the disability immediately, then people now say things like, “oh, is she interested in boys yet?” Please don’t get me wrong, I don’t blame the conversationalists. They are simply trying to keep the small talk going. However, it is sort of embarrassing to them if I have to say, “Well, my daughter was born with a severe disability and that affects her social skills, etc.”
Usually, I go ahead and introduce them as all regular kids and then immediately try to discern if they will take the conversation in a weird turn. I love coasting as long as possible with three regular kids in a conversation. It is almost as if all of my kids are socially equal and there are no issues. Ever once in a while, we just leave it at that and we are all ‘normal’. However, most of the time, it is appropriate to launch into the whole disability thing.
Your thoughts?
The Best Dream So Far
Last night, I woke up and thought, “Oh no! I was hoping that was real.”
In my dream, it was late at night and I was sleeping in our bed. Erica and our family friend, Tabitha, were also in our room. (I’m not sure why that was happening) They were laughing and having a good time, while I slept. I was waking up and not happy about it. On our floor was a beanbag where Kennady was. She was sick at her stomach (a normal issue around our house for her). Right when Kennady was about to throw up again, she said, “Mama??!!” Erica went over there quickly and helped her. We heard her say something but it didn’t really register yet. I guess I was so sleepy and Erica was preoccupied with Tab. At this point, I had fully woke up and was going down to help out. When I would talk to Erica, Kennady would mumble something almost coherent as if responding to us.
I was sitting directly in front of Kennady at this point and I said, “Erica, Kennady understands what we are saying!” Right when I said that, Kennady looked me in the eye. Her face squinted as if she was trying really hard and she finally said in a slurred forceful way…”Dada!!” I grabbed her and held her tight and cried. The whole room was filled with a different atmosphere.
The most beautiful part of the dream was that Kennady showed she comprehended everything we were saying. Hearing my 10 year old say my name for the first time was definitely a miracle and something we were excited about. However, the fact that she responded when I said, “She is talking to us” AND the way she responded with such determination was so sweet. Confirmation that she understood us was better than her actually talking.
Her ‘look’ this morning
Erica and I have been talking to Kennady for over 10 years and she has never audibly talked back to us. Two others have confirmed she has talked. Once my parents took her to Sesame Street Live and Kennady responded when Lolita said, “Hola”. When we were on our trip this summer, we were hanging out at the Ragsdales’ house. Kennady was watching Dora the Explorer and after Dora said, “Hello Everybody”, Kristin said that Kennady said, “Hi, Dora.” Erica and I were like “what the heck!”. Why does she always say things when we aren’t around?
To be understood is such a basic need for humans. What a blessing it is to know that you are being heard. I guess that is why this dream meant so much to me. I got the feeling that Kennady had been understanding us fully all along and that she was just then getting the ability to orally communicate her comprehension back to us.
Maybe a bigger question for us all today is: who are you ignoring? who are you listening to? Your response might have a bigger impact than you could ever imagine.
Pet Adventure
We got a pet mouse yesterday.
We (everyone except Robin) had been looking around for a new little pet and couldn’t quite decide.
I (Erica) had printed out info on little pets, but we weren’t quite sure what to do.
After lots of looking around, the boys and I headed home where I found a good deal on Craigslist.
$10 for a mouse and all the accessories! I figure this is a win-win. They get a pet, it doesn’t cost much and if bad comes to worse, we let our little friend run away in fields of green. Problem solved.
Well, we went to pick up the mouse that afternoon. The girl said to give her an hour. Suspicious? Nah.
So, an hour later we go pick up such a sweet little mouse.
The young college girl and her friend come out carrying our newly treasured family addition.
“Here you go” she proclaims. “Sometimes he scratches a lot and looks kind of nappy, but he is good”
“Oh, and you might want to use a washcloth the first time they hold him, just in case he is nervous, I wouldn’t want them to get bit.”
Did she just refer to a mouse as “nappy”? This is were the red flag pops up, but apparently it didn’t wave hard enough because we were full steam ahead.
“Oh, look how cute!”
We got home, got the new little creature set up in the boys bedroom.
Bedtime rolled around and we headed upstairs to their bedroom.
Except for one minor problem. The room REEKED of cute little mouse pee. The puzzle pieces are now coming together. Mouse, $10, cage and all.
Within about 15 minutes our new little addition got moved to the garage.
At this point, we aren’t sure what will become of “spider man/peter parker”, but for now he resides in the garage.
So, tonight at dinner, the eight year old is devising a plan on how to oust the new little friend, while his brother is figuring out how to add other animals.
The six year old says “let’s get a bird!”
The eight year old says “Poppa, let’s get fish!”
At that moment, my precious husband gets up from the table walks to the carpet and assumes the fetal position.
All I hear is “WHY PEOPLE! ”
I begin laughing hysterically.
Our dog “Pearl”
If you have ever seen Beethoven the movie, you can just insert my husband as the main guy. Minus the miserable attitude, his general feelings toward animals are spot on.
You see, I grew up with a mom that let me harbor almost any animal I could think of.
Here is the list:
Fish
Birds
Lizards
Hedgehog
Dogs
Cats
Pot bellied pig
So, needless to say, I feel like my kids should at least have the opportunity to have a pet, or two, or three.
My poor husband.
Kennady on the other hand is down with whatever animal we choose, as long as it lets her bite it.
Amy Goes Ninja
I would like to introduce to you my friend Amy.
I met Amy in High School and not just any High School mind you, good ol Lanier High School in central Austin. It was only about two steps up from the scariest schools in town. But we were Vikings and darn proud to be too!
Some would say Amy and I were destined to be good friends. After all, we were on the same yearbook page every year…except our senior year, but who’s counting??
The time we spent together was mostly surrounding yearbook. Oh, the memories. Lot’s of chatting and laughing and doing things that were probably not the best laid out plans.
One day, during that amazingly great and transforming year, Amy didn’t come back to school.
I asked around and a couple of our friends told me that she was in the hospital.
I was shocked. What on earth, she was just here the other day and looked totally fine.
Now, this is the part were I say to my kids who will one day ask “why didn’t you text or fb her mom??” “Back in my day there wasn’t any of this fancy mumbo jumbo!” “You either had a home phone or a pager from Pinky’s pagers!” Which could possibly indicate to your parent’s that your are a drug dealer…possibly.
So, basically, I just sat around like Phineas does with Ferb when he says “hey, were’s Perry?”
“Hey, were’s Amy?”
I had no idea the extent of what my friend was going through.
A long time later (felt like 8 weeks or more (insert actual time)) Amy came back to school for a visit. Except this time, Amy was in a wheelchair and very puffy.
Amy left school a healthy teenager and returned diagnosed with Multiple Sclerosis.
Amy is an amazing person and funny to boot.
She is a wife to Eric and a mother to two beautiful children.
She has been living life to it’s fullest, to the best of her ability.
However, as M.S. does, it creeps in and takes over.
Amy is ready to kick some M.S. booty!
Amy needs your help.
When have you ever seen a ninja by itself?? Never! Never I say!
A ninja is surrounded by other “bomb dot com” ninja’s just like it.
Here is a video about my sweet and incredibly brilliant friend.
Please take a minute and consider donating to support a family and give the gift of life.
Amy Goes Ninja: A Video
Been A Good Month for the Blog
With our trip posts, we have had a lot of visitors to the website. Thanks for checking us out.
If you are a new reader, here are several of our most read posts:
What do you say to someone with a disabled Child?
Ten of the Biggest Choices we have made.
“Cribs” RV Style
A little video tour of the RV we took on the trip.
Trip by the Numbers
We got home Sunday. It took about 3 hours to unpack the RV and clean it out.
We started thinking about all the stats of our trip. Here are some numbers:
3107 miles
388 gallons of gas (we will let you do the math on $$)
282 hours not wearing socks
4 hours wearing socks (church)
9 states
3 nights in parking lots
3 nights in state parks
2 nights in RV park
4 nights at friends homes
4 pastors visited in 4 states
1900+ blog visitors
1 sermon preached
38 families at HoPE conference
7 loads of laundry
1 clogged toilet
1 set of keys lost
1 beach day
3 museums
1000s of priceless memories
We are so thankful to our church family for sending us and allowing us to be gone on this journey.
We are grateful to the Krauss family for watching our perro!
Naghma (our awesome neighbor) helped us keep our house together. Thanks, Naghma.
Mike Hollifield cut our grass while we were gone. Much thanks!
Thanks to Advanced RV Rentals for giving us such a deal on the RV. It has been so helpful to travel with Kennady this way.
Check in tomorrow. We will post a video tour of the RV sweetness.
What People are Saying