I was baptized in the Mediterranean Sea while my family was living in Turkey.  On the third time I was finally relaxed enough to trust that nobody was going to hold me down for longer than the mere moment needed, and finally they declared me baptized.

People are already starting to ask what our plans on for Parker and getting baptized.  This is a pretty personal question that any LDS parent (as well as members of other denominations) of a child with special needs/cognitive delay will answer differently.  There are no one size fits all answer.  The best answer depends on your family and your child.

For Parker, a kid who doesn’t even go to church because of his health, walking him down into a baptism font and then dipping him backwards under water would do nothing more than scare the beejeebers out of him.  Not exactly the most faith building kind of experience.

That’s where we are right now. I’m fine with this.  If Parker were able to grasp the understanding of what baptism means, things would be different.

My religion teaches that before Parker came to earth, his eternal progression had superseded mine.  He didn’t need to have the same experiences I need to have in order to return with honor to the presence of my Father in Heaven.  The Spirit tells me Parker’s role is that of a teacher, providing opportunities for our family to learn lessons we could have mastered no other way.

Parker’s life, as well as the lives of others born with disabilities provide all of us with the opportunity to show our true characters.  Something I believe God does pay attention to.

If Parker’s cognitive abilities where at the point where he understood the meaning of baptism, my feelings might be different.  Especially if he were in a church class of his peers who were also preparing for baptism.

There’s nothing that says my kid can’t be baptized when he’s older and understands more. My heart tells me that he’s already got a one way ticket into the presence of God, formal baptism or not.

The BBC Breakfast News is reporting on a young man with Down syndrome who has been denied his first Holy Communion because he lacks the “concentration” necessary to prepare for Communion, according to the BBC. The Diocese also said children can “only proceed to the sacrament of First Communion when they take part in the Church’s life and understand the Church’s faith”.

The parents are upset and feel as though their child is being singled out simply because of the extra chromosome.  Their son attends a mainstream church class with his peers who are preparing to receive their first communion.  They feel their son is bright, and while not able to grasp every nuance within the Catholic religion, does understand the meaning of communion.

You can read more at www.faithfulnews.com

Here’s the interview compliments of YouTube:

What do you think?  What are your plans for baptism/communion/other religious rites of passage for your child with cognitive delays?  Again, I don’t believe their are any right or wrong answers, just what is best for your child and your family’s beliefs.

There won’t be as many pumpkins this year. There will be many more types of greens….mustard greens, kale, and the like. Greens and carrots are good for the lungs. Especially the lungs of a certain Brave Hero.

Remember my post on what I put into Parker’s blenderized diet? Parker’s nutritional lab work came back and it was exceptional. Not okay. Not good enough. Exceptional.

Exceptional. It’s officially the word of my day.

PS: Organic Gardening is one of my all time favorite magazines. Thanks Mom!

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I use this for Parker’s recipe book. You can actually find recipes for 1,000 calorie diets, 1,200 calorie diets, etc. It tells you exactly how much of what to add.

I use a lot of nuts in Parker’s diet. I was concerned that I wasn’t adding the proper amount of nuts (1.5 ounces). I finally invested in a kitchen scale. Protein is an important part of a kid’s diet. I also use this scale when I’m using cooked meats in Parker’s diet.

Note to self: Add almonds to grocery list.

View from the top.

Today’s blend included tender kale, cauliflower, strawberries, plums, almonds, millet, extra virgin olive oil and goat milk kefir.

I divide Parker’s daily blend into 8 servings. Parker’s first bolus is at 11:00 a.m. and his last is at 7:00 p.m.

A blast from the past. Parker and my Dad. Look how much he’s grown! This was back before Parker’s trach and g-tube.

Not so much as to be a hassle.  Not too little to notice.

Just enough.

Snow used to be a sensory nightmare for a certain Brave Hero. It’s better now. Except that gloves aren’t tolerated. Even if hands are cold to the verge of frozen. Instead my littlest of Hodson boys will raise his hands to me, my cue to wrap his hands in mine…..warmth without the sensory issues of gloves.

We stopped to visit the trees.

Then we painted. Yup. Painted. I purchased these sprayers and liquid water color from Discount School Supply. The sprayers are amazing because even not so strong hands can pull the trigger and get results. The liquid water colors are amazing because they don’t stain.

We didn’t do anything fancy. We simply sprayed. Oh, the look on Parker’s face when he realized that magic could be performed at the mere pull of a spray bottle’s trigger.

I have visions of a snowman with his accessories painted on. But not an everyday, boring white snowman. Nope. Real Heroes paint their snowmen pink, right?

Hopefully there will be a day with enough snow to go sledding. This boy of mine has adventure written all over his heart.

For the last year I’ve hoped  the internet might  provide a way for me to bring in a bit of extra income.   The  sometimes paycheck and recognition my writing has brought in has been nice.  While maybe not consistent, it’s been very welcome.

Working at his light table.

I’ve searched the web over for something I could do while still tending to an often sick child. One eye on my laptop and the other on the sat monitor during another all nighter while sitting in the sweats I pulled on three days ago.

It takes a lot of time online to market yourself.  Hours of each day. Precious moments that once gone can never be had again.  I’m finding that the more time I spend trying to land a paying gig, the more frustrated I’m becoming.

I’m noticing that I’m spending less time on the things that matter most.

Today I remembered  the title of a book I once saw:  “Do What You Love And The Rest Will Follow”

Luckily most of my loves can be found right here at home.  Many centering around a certain Brave Hero that needs his Mom to be focused on him instead of so focused on an online job.

Our family motto.

So, I’m going to go back to the things that are most important.

Perhaps there will be time later to work on political campaigns and make it big on the internet.

And if there isn’t, it really doesn’t matter.

Doing what I love will be enough.  Even if the rest never follows. 

There is only one smile like this in all the world.  Each time I see it I’m reminded of what’s really important in life.

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Parker’s red threads came in the form of oxygen tubing, ostomy bags, schedules,  medications, therapies, Dr. appointments, maxed out credit cards, and long sleepless night.

Yes.  You read that right.  All of these things have helped bring our family closer together.

Parker is the one each of my kids make sure to say goodbye to before they leave our house, and he’s the first one the seek out when they get home.

Through Parker my kids have learned the meaning of sacrifice and it’s power to make a family stronger instead of bitter.

The Red Threads bring us closer as we gather to pray and fast for the littlest Hodson boy, and through our prayers our faith is increased.

I’d like to add a bit to this Chinese lore.  I believe that not only do the Red Threads connect Parker to those of us here on earth, but to those in Heaven as well.  The ones who gather together in protection and love beyond a veil hidden from our view.

The uniqueness of Parker’s threads has introduced us to a lifestyle shared by so many other beautiful children and  families; others who have inspired us to push the boundaries set by those not connected by our variety of threads.

Each day I thank my Father in Heaven for the beauty and blessings He’s given us through Parker’s extra chromosome, and the  Red Threads that serve to weave a legacy of love within our family and the many others who love our Brave Hero.

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