Two stories, Two books

It amazes me that God has placed some amazing friends in our lives.
These two families, we have known long before children.  And now we a extraordinary common bond; special needs children.  Not only are they wonderful friends and great support, they are authors.

The McNeils.  We meet in college (which seems to be too many years ago).
Matt McNeil's book is The Strange Tale of Ben Beesley.
In the spring of 2008, doctors diagnosed Matt and Shannon McNeil’s children with a rare, degenerative, and ultimately terminal genetic condition called MPS III. There were simply no effective treatment options to help them. By the winter of 2009, Matt started writing as a way to put some space between himself and his grief. He wrote THE STRANGE TALE OF BEN BEESLEY about a fly named Ben who sets out to save his friends from a cruel spider’s venom. Although BEN BEESLEY is an exciting adventure story written for middle grade readers (ages 9-12), it is also an expression of a father’s hope for his sick kids. Part of that hope is finding a cure for MPS III, which is why proceeds from the sale of this book will be donated to the National MPS Society to support research. With your help, the next family that receives this diagnosis might also be told about newly discovered treatment options.
You can check out their story and the book at http://benbeesleybook.com/
And they were interviewed on our local NPR, a beautiful interview, you just have to listen.



The Colemans.  Whom Jeremy has known since childhood and now they live just a mile from us.
Cara Coleman's book is I am Justice Hear me Roar!
A wonderful children's book about Justice, how she is different and how is she the same as other children.  A great book to help other children understand disabilities.  Super cute book and great pictures (even comes with activities), the kids love it.
You can her out on amazon.

Those door thresholds

Wheelchairs are not meant for door thresholds.  I used to be able to rock up any stroller over a door threshold, bump or even a curb.  As Brayden has moved up to a "real" wheelchair, I have come to find out that I avoid all curbs; and door thresholds or floor transitions are my new frustration.

The door from our house to the garage has a threshold, that requires a bit of a running start to get a good push over what seems to be a small bump.  But that bump and others like it, is difficult.  As you can see from the chunks taken out in the bottom of the door.

So when planning for Brayden's new room, we had a few design hiccups with those transitions and thresholds.  First, the side room that is being converted to Brayden's suite is a step down.  One step can prove to be difficult when designing a proper ramp.  After much discussion, the ramp was completed.  Jeremy even tested last night with Brayden's wheelchair.

Then the transition from the wood floors to the bathroom's tile floor then into the shower...in case you have never noticed, there is usually some sort of transition strip at each of these.  Well, the entire floor of the room had to be raised in order to have a smooth entry into the shower (because of all the things that need to go in to the base of a shower).

All of the floors have been completed and all have smooth transitions.  No thresholds to conquer...just the one to the garage.

A few more things to be done and then Brayden's room will be complete.  His big moving day still to be determined...

Errands with Brayden

Today was mommy and Brayden day.  The nurse had moved her hours around so it was just me today.

Brayden and I had two tasks:  Home Depot and Grocery store.  Let me tell you, I was getting an abundance of sympathy help today.  I actually had to turn people away because I had enough help.

Home Depot.  Many things on my list for Brayden's new room; from little things like drawer pulls to the big things like a toilet.  A few steps into the store and I had a personal shopper dressed in his Home Depot apron.  This worker pulled my carts around the store, loading in all that I needed.  And being ever so patient as I hummed and hawed over important decisions like which door stopper looked best.  Then it was check out time and another helper appeared.

While filling my carts, I was wondering how in world could I fit this and a toilet in the back of my car?  I did have Brayden's wheelchair and it was not going to be easy.

I rolled Brayden out of the store, followed by one worker with one cart and the other with my other cart; all to discover that it was pouring down rain.  Did I mention I loathe loading Brayden and his chair in the rain?  Three different people stopped to offer me help.

I decided to fold down the back seats but first I had to load Brayden.  Then I crawled into the back of my car with a Home Depot worker to fold down the seats.  Then the loading began.  Last item in was the wheelchair because I needed it for grocery shopping.  The wheelchair was soaking wet by this point.

Off to the grocery store.  This could be pushing the limits of my car's capacity and Brayden's patience or could turn out to be a successful day of errands.

We sat in the grocery store parking lot waiting for the rain to pass.  Then I unloaded his wheelchair and dried it off with his blankets.  Grocery shopping is always interesting since with one hand I am pushing his wheelchair and the other hand is pulling the cart behind me (kind of obnoxious and taking up way too much space).

The grocery store was a success minus the angry lady in the store motorized scooter; who seemed filled with the power of the scooter and proceeded to take down anyone in her way whether with words or the actual scooter.  And we seemed to be in the same shopping pattern, crossing paths many times.  I avoided all eye contact and tried my best to get Brayden out of her way.

Out in the parking lot, almost every person that passed asked if I need any help (did I look that pitiful because I was actually feeling good).  It is refreshing to have strangers offer their assistance.  Maybe taking Brayden out for errands isn't so bad after all.

The car was loaded down, every available space was being used in the front and back.  Once we arrived home, I did not anticipate the amount of time it would take me alone to empty the car since along the way I had so many people helping.

I am having a pity party kind of day

I am irritated, frustrated, disappointed, etc.
I do not have the luxury to do as a I please.

the construction leaves lots of dust.

I sit here this morning and wait for the workers to come.  Brayden's room is making great progress and it is exciting to see the room come together.  The house is covered in dust, yet I know that it is temporary and it doesn't really bother me (only when I realized yesterday that I sat on a stool with my dark jeans and ended up with a dusty white bum).  The room will be a great and welcomed change.  It may be my new favorite room in the house.

With that said I am frustrated.  Yet again, I wait for workers.  Yet again, my plans are canceled because people were supposed to be here between 8-9 a.m. and no one has come.  I finally, for the first time in years, signed up for Bible Study at my church.  The first time in years that I have done something for myself.  This year I have missed so many of the study days because my time and my schedule is dictated by everyone else (appointments, meetings, etc.).  The first plans to get changed to make things work, is mine.

My time is not my time.  My schedule is centered around everyone else.  I do not want to get resentful towards others and especially not Jeremy.  But even he can go hunting, watch TV or just sit outside to relax (and he does work crazy hours with lots of travel now).

What do I do for myself?

The one and only consistent thing I do is from 8-9 p.m. every night.  That is precious time to me.  I finally get to sit down and do nothing (I do not even want to fold laundry during this time).  One should NEVER bother me during this hour.  It is the one and only thing I get consistently to myself.

Still that is not enough.  I have moments (like today) when I am on the verge of tears because I feel like I am loosing myself.  I get swallowed up in the craziness, needs, priorities of everyone else.  And some how I am the one who needs to make everything happen.  I am feeling selfish because I want to be a priority.

Yes, I love being a mom and wife.  Yes, I have to do these things.  Yes, on most days it does not bother me.  Yes, I know I need to do more for myself, but how? I feel like if I do make plans, then it leads to disappointment...way too many times of plans gone arwy.  I guess I should just be happy with the moments I do get.  But today, I am having a pity party.

Party time

We finally had Brayden's birthday party with the family.
Brayden enjoyed the party for a while then really wanted to be in bed...too much fun.

I love my happy boy!

Bummer, almost all of the photos from the day are really blurry (some how the setting got changed on my camera).  These are the only ones that worked.

World Wish Day

Today is World Wish Day for the Make-a-Wish Foundation.

I cannot begin to explain the amazing experience that Make-a-Wish provided our family.  There are so many ways we can help make a wish happen.
Donate money
Donate airlines miles
Shop - shop at Brooks Brothers, Disney store, Mattel and other
Volunteer

Hospital Smell

How many times have you heard someone (or maybe even yourself) say, "It is that hospital smell I do not like"?

Last week I finally had the chance to visit our sweet friend Justice, the sweetest girl ever, at the hospital.  I was walking through the maze of halls and it occurred to me that I no longer could smell that hospital smell.  So I figured it was like your home...you know when you go into some one's house or car and it has a certain smell (usually not bad but a smell that is all its own) but when you walk into your own house, you do not smell anything because you are just that used to it.   (And people must be used to their own house smell...as I have observed watching too many episodes of Hoarders, when the therapist has on a mask because of the smell and the homeowner is climbing over years of rotten trash and food completely unfazed by the odor.)

Could it be that I am just that used to the hospital smell, that I do not smell it any more?  It is like my house and my car, places we spend lots of time and no longer triggers that sense of smell.

Thankfully Brayden has not been inpatient in a while but we are there for tests, procedures and doctor visits.

Shh, don't tell anyone Brayden had a taste

I gave him a little tiny itty bitty taste of icing.  It seems so silly that we have a birthday cake for a little boy that cannot eat the cake...so I put a little icing (maybe the size of a pin head) on my finger and gave him a taste.  And let me remind you, Brayden does not have anything by mouth so cake icing was going to be interesting.

Well his lips were smacking (and he did not gag, which I kind of was expecting).  Then I gave him one more lick.  After all he was the birthday boy and he enjoyed his special treat...as you can call by him smacking and licking his lips over and over again.

And please excuse the construction noises in the background, the dog barking and me swatting Carter and Luke away from Brayden while I tried to video.

Birthday, Five years

Yesterday I was driving around to pick up little items to make Brayden's birthday special.
Things to decorate his wheelchair and flashy buttons to wear for school.
Then of course a cake, that only Carter and Luke will eat (and Jeremy is out of town).

Last night Carter and Luke wrapped the presents...not pretty and a mess of tape but they wrapped them with love.

Carter and Luke decided to hide the presents around the first floor.  Carter and Luke wheeled Brayden around for a scavenger hunt to gather his presents today.

As I was driving around yesterday, I was thinking...which usually means emotions are bubbling to the surface.  I was thinking about 5 years.  In some way, I never thought to his fifth birthday; never projecting much into the future.  Maybe, on some level I worried that he would not make it to his fifth birthday.  Or maybe, five years old really means being little boy...while his development is still infantile (although his personality is showing to be much more of a five year old, very opinionated with what he likes and what he does not).  Five years means my baby is not a baby, not even a toddler.  

Five years of this.  How many hospital stays in five years?  Seizures (I am too scared to tally up this number)?  ER trips?  Doctor appointments?  Panicked days and nights?  The stress, pain, suffering, etc.

While I can quickly drum up the feelings of sadness over the past five years, the emotion that rises above all that is joy.  I really cannot imagine what the past five years would have been without him.  How much these five years have changed and shaped our lives, really defined who I am, what I truly believe, really if I have the fight or flight attitude (fight, by the way)...all along the way knowing the God has a plan.  Finding a entirely new level of love for my husband and boys; how much I absolutely adore, cherish and love Brayden.

My Grammy called me this morning.  She always likes to take a trip down memory lane...the memory of Brayden's actual day of his birthday.  In those moments of finding out his troubles, I could barely see the next day, let alone his imagine his fifth birthday.  And to be honest I do not let myself go back to those first days, moments of holding my baby not knowing what the future would bring and the doctors giving such grim hope.


I do know that God protects me from seeing the future. Little by little we deal with this and we deal with that...sometimes troubles come in a light rain and other times it feels like a monsoon.  I do not think about Brayden's future in the way I think about Carter and Luke; imagining what sports they will play, what college they will attend, even how their voice will sound when they are older (if you have talked to Luke, then you know why I imagine this).  For Brayden, I can plan out appointments but thinking too far ahead is just not possible.

What would I tell myself five years ago?  Would I want to know?  (I have answer for these questions but that is a separate blog for another day)

Brayden is five years old.  This little boy has changed us for a lifetime in just five years.  The word joy has taken on a whole new and deeper meaning.  We are happy to celebrate his five years!

Birthday TODAY!

Brayden is five years old!  What?!  My baby is five years old!

I will be back with some deep thoughts and of course pictures about his milestone...

Hot weather Hot body

Brayden lives his life mostly in a temperature controlled world.  We know not to have him outside on hot sunny days or "play" in the snow for too long.  His body temperatures changes.  Too cold - his temp goes down.  Too hot - his temp goes up...when it goes up it tends to cause seizures.

Today was a hot day.  Here in Northern Virginia, we have barely stepped into spring weather, with days last week in the 50s and nights in the 30s.   Then today was in the upper 80s, maybe even 90 degrees.  Do you turn on the AC for the hot hours of the afternoon?  Especially since the evening cools off quickly and tomorrow will be in the 70s.

I decided no air conditioning...not a good choice.  Brayden's room gets the afternoon sun and his window is right above the metal roof of the front porch, a cooker. 

And Brayden was cooking.  His little body cannot tolerate the heat.  A temperature for him.  His face looked miserable.

Sometimes I do not realize the effect the surrounding temperature has on him.  It still surprises me that when he gets hot, he actually gets a temperature...it does not help that he does not sweat either, no way to cool himself off.

I cooled him off with cold water flushes into the feeding tube, stripped his clothes and cool wash clothes.

Accessible Home

Creating an accessible home is not something that was ever in my life plan...

But the time has come to make it happen for Brayden and our family.  Brayden has been on the second floor with all of the bedrooms.  He weighs about 36 pounds and he offers no help (in fact resistant) when trying to carry him, let alone up and down the stairs; not to mention how long he is getting.

We looked into an elevator for the house, but we could not find a way to make it work with our floor plan.  Carter and Luke want an elevator for the fun rides and sending the dog up and down.  The elevator was not going to happen.  We also discussed the possibility of building another home...but we are very settled in this house in Waterford.  We have a large great room on the side of the house, a room that we have not used much so it became the best possible option for making the house accessible for Brayden.

The work has started this week.  Big changes and we had to say goodbye to the fireplace in the great room and the beautiful high ceiling, but the new Brayden suite includes a bathroom with a large shower (to easily roll him in), walk-in closet and a ramp (since the room is a step down).  It is looking good and I am excited for Suite a la Brayden.

The plan:

School and IEP

For parents with a child in special ed, you know this time of year is planning for next year with the IEP.

Brayden, by age, should be heading to kindergarten.  I have been mulling over this idea of him going to kindergarten since the beginning of this school year...and it never settled in.  Thankfully he can go another year in preschool.  

Many reasons to keep him in preschool another year, which take too long to explain.  But today was the IEP for next year in preschool.

The only major change:  going 5 days a week next year.

He started this year at 3 days a week, then after Christmas he started 4 days a week.  He has some really great days at school and some really not so great days.

Today he had a good day.  Playing on the computer, hitting the switch to make the computer go.  I came in the room to pick him up for the IEP meeting, another adorable little boy was "saying" hello so I went to him, well it seemed Brayden wanted my attention and he was hitting the switch to show his mommy what he can do on the computer.

Shoes for Fat Feet

Fat, sausage rolls, plump, round, wide...
All words to describe Brayden's feet.

I have a hard time finding shoes for Brayden.  Double wide, triple wide, still not a good fit.  And then to try them with his braces.  I came home this week with more shoes to try on him.  His feet literally oozed out of the Stride Rite double wide sandals, chubby flesh poking out of the sandal holes.  I know we have to head to the specialty store to buy those special shoes.  But I must say I like to have options of shoes, even for Brayden's wardrobe...vain, I know.

I headed to Nordstrom to pick up TOMS shoes for Carter and Luke.  I quickly decided that they would tear through those shoes in a matter of moments.  As cute (and a great idea) as those shoes can be, it was not going to work for them.  But could they work for Brayden?

Oh yes they did (without socks and braces but perfect for spring/summer).  I am now a HUGE fan of TOMS.

Easter Fun

We made it through Easter (we have not been quite as successful in the past).
We made it to the 8:00 a.m. service at church (we are usually 9:30ers).

Waking Brayden up in enough time to have him ready, might not have been the best idea but he made it through the day.

He enjoyed church...perhaps too much...singing, saying Amen, talking, whatever he was doing, he was doing it loud so we ended up in the lobby where he continued to make his happy noises.  Yes, his mouth is wide open because he is just that loud.

After church we had a few extra minutes, so off to take some pictures.  Anyone who has boys, or for that matter children, knows that taking pictures...keeping those clothes clean, free of grass stain, food, etc...can be a challenge.  The harder we try, the cheesier the pictures can be.  Many pictures and we end up with just a few good ones.

And the boys wanted to use the camera so we come up with some interesting shots.

Comfortable on Vacation?

Brayden screaming in the car for hours.  Brayden screaming for the first couple of days on vacation.  It was not unexpected for him to spend time screaming or crying.  We hoped and prayed it would not happen (Luke prayed the nights before vacation that Brayden would be happy).
What makes him uncomfortable?  What makes him comfortable?
I do not know.  Nor do I know why he liked to position his legs like this.

Or his head like this.

Some how this is his way of getting comfortable on vacation.

Brayden and his family

Brayden was just happy to be with his family...at all hours of the day.

He slept in the room with Jeremy and I.  He would wake in the middle of night, knowing that Jeremy and I were there so he would get loud and kick his legs.  If would acknowledged him, he would get louder.  If he was in his own room, he would probably have gone back to sleep a lot sooner.

Brayden and his daddy sat beside the pool, happy to be outside listening to all going on around him (while I was off with Carter and Luke on little adventures).  But Brayden was happy to tag along just to be around everyone.

Finally Vacation

Yes, I am finally posted about us finally going on vacation.

First let me tell you a little story about a sweet British woman, whom we shall call "the Queen".  This sweet woman has become a dear friend to our family.  Many months ago she heard about Brayden, at the time he was in and out of the hospital a lot.  She was very kind to Jeremy.  She offered for us to use her vacation points so that we could go away as a family.  She sent us books and information about the Disney Vacation Clubs, along with very sweet and funny notes.  At the time, we could just not make it work for Brayden.  Months passed and she offered it again.  I visited her home (since she is British, she has many things referring to the Queen) and we settled on a vacation.

We were off to Disney Hilton Head Resort by way of our new friend, the Queen.

About nine hours in the car and  I managed to pack all of Brayden's gear.  So between the back of our Denali, the Thule carrier and a back rack, we were loaded down.  The first leg of the drive was...well, not so nice.  At one point, Jeremy turned and asked if we should head home.  Yes, it was because of Brayden.  Brayden was screaming.  Really, really screaming.  I gave him some medication, hoping it would calm him and help him sleep...but he eventually fell asleep from exhaustion of screaming that long.

That is when I get to be the "cruise director" for all the boys in the car.  Handing out activities, drinks, snacks, movies, video games, etc.

After the screaming stopped the drive went pretty smoothly until we notice Brayden's drain was looking a little milky.  His drain from his stomach which should only look clear/yellow was looking yellowy milky.  It seemed as though his food was backing up into his stomach (not sure if that was even possible).  But we stopped his food.  Then Jeremy asked if I looked up the closet hospital to our vacation spot.  Then we realized Brayden had not urinated for more than 12 hours.  No idea why because once we arrive and put him in bed, everything was following just fine...no need to tour the Hilton Head hospital.

We were thrilled to be in Hilton Head!

We all slept well that night.  The first couple of days were a bit rough for Brayden, he continued his love of screaming.  Jeremy and I spent many hours pushing him around the resort and on the beach...because the moment we stopped, he would start screaming.  He laid in bed with us and even was carried around much more than usual, just to keep him happy (he may have been working his daddy a bit).

After the first couple of days, Brayden settled down and we all were relaxed and happy.
Jeremy helped him relax with long baths...Brayden would fall asleep.

We spent many hours poolside and on the beach.  Brayden loved to be outside and with his family.  He was happy.

 We decided to take his jogger stroller and his wheelchair...comfortable in both.

This trip was the first time, in a long time, that we have traveled without help for Brayden and we managed just fine.

I will back with more photos.