Kennady Is Thankful
Here are some thoughts on Thanksgiving from Kennady’s life.
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.
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