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The Latest Steele News

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We have been unable to post lately because life has simply been too busy.

Kennady has gone through difficult sick patterns, Erica is slammed with school, and Robin (me) just finished the busy Easter season at church. Not to mention we are full time moms, dads, sisters, and brothers.

Life is hectic and busy…so much that we often have difficulty remembering what we are doing, but then again we are getting old too.

The pic above is Erica getting meds ready for Kennady’s bedtime. She takes 8 different meds at that point in the day. Most of those are pills that we have to crush, dilute with water, and put through her feeding tube. They help her relax, digest her food, fight allergies, and regulate her kidneys.

On Wednesday, I received a call from a pregnant mom in our church that received the exact same news that Erica and I received when Kennady was in the womb “we aren’t seeing something we should”. It turns out they are walking the same path we did 12 years ago. We are so honored to walk this path with this family. Please keep them in prayer.

We can not wait to tell you the story of us meeting our favorite hip hop star, TobyMac! That will come in a post ASAP.

I just got the call that our lawn team has all bailed this weekend and the church grass still needs to be cut. Therefore, I just put on old jeans and am heading out the door to make the property look splendid. After all, my pastor always said, “you don’t serve the bread of life on a paper plate.”

We love you and thank you for your support of us through difficult times. We are here for you.

What the Heck does Kennady eat?

People are always curious about what Kennady eats, how she eats, etc.  It just so happens that this is tube feeding awareness week.

So, we thought we would share with you a little humorous look into…What the heck does Kennady eat??

Before you watch the video, we want to give a shout out to our GREAT dietitian at the Scottish Rite Hospital in Dallas: Janice Scott!!

bon apetit!

The Day You were born

This is the day your were born.

Your beautiful face, your sweet cry, was music to our hearts.

H.o.P.E. was born that day.

Hope that, no matter what they said, we would see more days with you than they thought.

Hope that, no matter the outcome, we would stand firm that you were here for a purpose.

Purpose has been pouring out of you from the start and woven it’s way through the fabric of our souls, transforming our lives.

Looking back it is hard to imagine we would be where we are now.

Holding you and seeing you take each new baby step forward.

The joy that floods our hearts on this day has no words, simply a feeling.

A feeling of love with no boundaries, rich joy and a heart that is open wide to possibilities

These are the gifts you give us just being you.

No words, just smiles, attempts at reaching and holding.

The journey has been long and hard, but the joy you bring outweighs every moment that was tough.

On this 11th birthday and 11th full year of life, we give thanks for an overflow of life that we never dreamed we could have been blessed with.

Happy Birthday to you, sweet girl.

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?