Thursday, May 31, 2012

Moving down

Brayden is now a first floor dweller.  His accessible room has been completed.  And I have been consumed with getting to ready for him.

It was actually completed a few weeks ago but we were waiting on approval to move his bed (a SleepSafe Bed, a great hospital bed).  The insurance company had to sign off on moving his bed!  Otherwise, if the medical equipment company disassembled it and reassembled it with problems, they would not cover damages or replacement.  Seriously, insurance approval to move a bed from upstairs to downstairs.

Yesterday morning, a crew came to move the dressers, etc.
Then came the medical equipment company to move the bed.

Brayden's room was ready.  I got him off the bus and wheeled him right in to his room.

No longer upstairs.
His former upstairs room. 

Now downstairs.  And he did just fine.  The room is much bigger than his upstairs bedroom and has a good echo.  For the first couple of hours in his new room, he would make his "talking" noises, very loud and listen to his echo.
The new downstairs room.

We have a huge shower, with a new shower chair to come.  And a closet...did I ever mention I love everything organized (as I tell the boys when cleaning up, "Everything has to have a happy home, if it does not, then it does not belong in our home"; aka everything has to have a place).

Still getting things situated and decorating to be done but he now resides on the first floor.

In some way this feels like a significant milestone.  My stomach has been filled with butterflies and tears ready at any moment (although no tears yet, it just feels like they are right there).  I am not sure I can articulate why...but I will try.  For starters moving downstairs became a permanent decision.  A decision that we will live in this house for a long time.  A decision/coming to terms with the plan to make an accessible home; we have a child who needs an accessible home.  We do not have first words and first steps milestones with Brayden, we have first wheelchairs, first feeding tubes and accessible rooms.  Some how, in the middle of the excitement of the new gear and things for Brayden there is still a bit of sorrow...sadness for him, that his life is not easy nor is ours and the extreme measure we take to make it better.

I remember years ago, visiting a friends new home (while it was being built).  They needed a one-level home for their special needs child.  I remember driving away and thinking, That has to be hard; coming to grips with the fact that you have a child that will never walk and you need a house suits the child's daunting needs.
Clearly, I thought this long before we had Brayden but I may have been pregnant with him.  Since then I realized that many decisions come little by little and in steps that you may not even realize at the time.

This side room that is now Brayden's room.  This extra side room on the house was a last minute decision when we were building the house. We had a contract on the house, all of our items picked out, floor plan designed, etc.  This side room was not on our plans but we changed our mind.  We called to find out if we could make changes.  We added this room and made adjustments to the plan.  Little did we know that God had a bigger purpose for that room than just adding square footage and curb appeal (and you know God is concerned with the curb appeal of our house, right?!).

The room upstairs was the room we put Brayden in when we brought him home from the hospital as a newborn.  And the baby to child that we brought home from the hospital many more times and placed him in that room...oh if those walls could talk...they would describe the many hours I sat in the rocking chair, not being able to sleep, terrified, sometimes holding Brayden; other times just staring at him sleeping completely baffled with the thoughts of caring for him and how this was our life, our son.

Moving him downstairs, is like closing a chapter.  Moving forward.  Brayden has been doing well that past several months.  We feel settled/content with this life that God has chosen for us.
Brayden moving downstairs, while we move on.

Wednesday, May 23, 2012

His "happy" place

Brayden can have many days in a row of being unhappy (and I am being kind by just calling him unhappy because he kicks and screams like someone is hurting him).

For several days in a row Brayden has been unhappy.  We were out for lunch on Sunday and Jeremy ended up sitting with Brayden in the car.
The ONLY way that we have found to calm him down the past several days is to hold him...his belly to our belly, head resting on our chest and his legs wrapped around our waist.

The position is very new (like never in his life, until the past several days, new)  I neither would have thought he liked this position but when we are desperate, we try to calm him in whatever way we can.

Every day this week he wanted demanded to be held like this.

Yesterday afternoon, he kicked up the screaming/crying; which turns into violent retching (he does the upset thing to the max).  Of course this happens when I am trying to help Carter and Luke with homework and fix dinner...and the nurse is gone for the night.  I kept going in and out of his room trying to console him: music, movie, lay on back, lay on side, lay on the other side, sit up, etc.

Finally Carter and Luke were situated.  I could hold Brayden.  I tried him this way and that way; of course he ended up like this.
I tried a couple of times to change his position (since my back was hurting) and the screaming/crying started back up.  I feared to move him and unleash his beast.

So we sat some more.  I whisper-yelled (a talent only mastered by moms) for Carter and Luke to get ready for bed and tuck each other into bed.
I sat with Brayden for another hour because any deep breath, sneeze, or wiggle from me caused him to start up again.  But he continued to settle into this position and eventually fell asleep.
I did not want to wake him so we sat a bit longer then I tried to gently transfer him to his bed...that was not as smooth as I would have liked....

Thursday, May 17, 2012

Botox day

Today was a day for a round of Botox.  This was his third time for Botox in his legs.

Two hours of waiting in pre-op.  He was happy comfortable and apparently talked more when he heard other children.
15-20 minutes in the surgical room to get the Botox.  We barely sat down in the waiting room before the pager went off to go see him.
Ten minutes in post-op.  He woke up very mad at the PACU nurse, probably for waking him up and poking at him.

All day he has been a happy camper, "talking" all day long with his happy noises...hospitals are no big deal for him.

Tuesday, May 15, 2012

Brayden and the chicks

While we all know Brayden is a ladies man...I am actually talking about real chicks, baby chickens.

Papa Warren had his little chickens out for the kids.  Brayden was trying to make a new friend with the little chick.  At first, not sure about it, something soft, squirmy and making strange noises, he did like the little chick.
 He was trying to rock his head over and down to get a better view of the chick.

Friday, May 11, 2012

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
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.

Wednesday, May 9, 2012

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 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...

Friday, May 4, 2012

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.

Thursday, May 3, 2012

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.

Tuesday, May 1, 2012

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.