Brayden's Halloween

Pumpkin lights adorn his chair, flashing pumpkin necklace and pumpkin sweatshirt...all for Brayden instead of a costume.

And his pumpkin he decorated at school, with a little help!

With his peers

Jeremy and I have been helping with our church's AWANA program.  A program for the kids.  In years past, Jeremy would take Carter and Luke in while he volunteered.  This year, Jeremy and I are both helping thus Brayden has gone to AWANA a few times.

Jeremy and I have been helping with the kindergarten age group (oh the crazy things those little kids say...stories I can only say in person and cannot put in writing here).  After Brayden was with me a couple of times, it all of sudden occurred to me that these were his peers.  He was actually in a room of his peers (a room of 50 excited and loud 5 year olds).

Brayden does not go to his Sunday school class.  He hangs with us during Sunday morning church service.  He has not been to AWANA or VBS or even any 'ol regular class with kids his age, since he was about two years old.

I had to process this picture.  Brayden in his wheelchair, developmentally still a baby but five years old sitting in a room filled with other five year old children, who were all talking, walking and having a great time.

I have had to remove myself from comparing him or thinking about what he would be doing for "normal" development.  I had to let that go a long time ago because it did nothing but hurt.  Today, it is almost to hard to imagine what he would be like as a "normal" five year old, not in a hurtful way, but in a way that Brayden is who he is and I cannot imagine him being anything else.

Well as for AWANA, Brayden is not quite a fan and not sure he will be a regular.  The kids are too loud, it is too late for him and he would rather be at home.  However one night, he made it through the entire program...even the rowdy game time.  He almost seemed to enjoy it.

The kindergarten kids have been very sweet to him.  One little girl stands about one foot from him and just stares with her heard tilted to the side.  She may come to get me if he gets upset but otherwise she just stands and stares, in a very sweet way.

Where is the tooth?

This little sweetness loves to ride in the car with other children.  I had a car of boys headed to a birthday party.  Brayden was sitting quietly, occasionally chewing on his finger.

A few minutes away from the party location, I glance in my rear view mirror and I see blood.  A ring of blood around his mouth.  Blood?!

We arrive at the party.  I quickly jump out of the car and tend to Brayden.  Where is the blood coming from?  Did he chew his finger too much and break skin (that has happened before)?  Is he regurgitating blood?  A bit of panic was setting in.

Then I see inside his mouth.  The top tooth was missing and in place was the bloody gum.  Brayden was fascinated with the new hole.  He tried over and over again to get his finger in to feel it.

I found the source of the blood but where was the tooth?  A front tooth is a pretty big one so I was hoping his did not swallow it.  I looked in his clothes, in the car seat, around the car seat, etc.  I succumbed to the idea that he swallowed the tooth.  I started to clean up the blood, oh how he loves to have his face wiped...right up there with needles.

Brayden was wiggling his tongue around and around.  I assumed he was trying to discover this new sensation in his mouth.  Then I saw it.  The tooth was rolling around his mouth.  I had to go in and fish it out.  He loves something in his mouth just as much as he likes to have his face wiped.  Try to put anything in his mouth and he will clamp it shut, he will bite down to keep every thing out.

I grabbed his jaw, held tight and stuck my finger in trying to stop him from swallowing the tooth.  After several tries...I chicken out a few times and jerked my finger out to avoid a bite...I got the tooth.

Oh and there were still boys in my car, not just my children, so hopefully they were not to traumatized by the tooth incident.  Once I had the tooth, I showed the boys and then...

I dropped it down a crack.  Carter said Brayden could still do the tooth fairy.

Brayden was thrilled with the experience.

Fall outings

Brayden has been handling our fall schedule well.  He is not a fan of anything outside of the home or school (and sometimes he is not a fan of school).  So going to all of the football games, church and other outings has been a challenge with him.  He certainly makes it known he does not want to be out.

This past weekend we did not have a football game on Saturday.  We headed to a local farm with giant corn mazes.  Brayden was bundled up and "ready" to go.

So many things that Carter and Luke wanted to do and thankfully Brayden was happy to go along.
Although he was giving me that look...
That says don't mess with me.

It was a great afternoon.
But of course, we had to get one of my "favorite" comments about Brayden...
I was holding him, he was squinting his eyes since he is sensitive to the sunlight.  Random stranger to me about Brayden, "Oh look who is so tired.  This place can wear out the kids!"  I didn't say much other than (saying nicely), "He's not tired, just really sensitive to the sun."  Why do so many assume he is tired?

We tired to get a family photo but they cut out Brayden for some reason.

By the end of the day he was actually tired.

A little adrenaline rush

And not the good kind.  I used to get daily doses of adrenaline rushes from Brayden.

We have settled into a routine with Brayden, we can even handle the "routine" seizures and not be too frazzled by them.  Last night was one of those hear pounding, adrenaline rush moments while watching him go through a seizure.

My oldest had a football game.  Brayden already had a long day of doctor appointment, school and then (much to his dismay) a weeknight football for his brother.  Brayden settled in nicely at the game but as the evening went on he became more upset.

By the time the game was over, Brayden was screaming mad.  My father-in-law pushes Brayden around most of the games and this was another night Brayden was working his grandpa for some constant pushing in his jogger stroller.  As it came time to load Brayden in the car, I realized that he was not just crying he was seizing.

It was the awful ugly seizure where he screams and cries like he is trapped.  A cry that is like a high squeal, a sound that Brayden only makes during these seizures.  He then started pounding his head against the car seat.  Screaming and crying with the pounding...my heart was pounding.

The majority of Brayden's seizures do not upset him in anyway.  But this seizure...he sounds terrified.  And it upsets me to see him go through it.

I drove home with Brayden and his other brother, Luke.  Brayden screamed/cried and continued to pound and thrash his head.  All of sudden the screaming stopped and not in a good way.  I started shouting to Luke, "Turn on the light!  Is Brayden still breathing!"  Just as I said it, Brayden started screaming and crying again.  Then he went silent again.  I asked, in a not-so-calm manner, for Luke to check Brayden again.  He seemed to be breathing but he looked as though he was trying to fight his way out of the seizure.

We arrived home and scooped him out of the car and went straight to his bed.  He continued to seize but then stopped.  He was wiped out.  I did not give him any extra medication.

He slept great (and I checked on him many times).  I could not get myself to calm down.  I feel so helpless when he is seizing like that...and I am planning in my head how to handle a trip to the ER, thankfully he did not need it this time.

This morning he started again with seizure activity; some of his daily seizures with a dash of these "disappearing" seizures, where his face gets stuck...no moving, no blinking, he just disappears.

He was stuck in this look for several minutes, no matter what I did to him (which includes loud clapping, squeezing and kissing his checks, sitting him up, etc.)

He came out of the seizure and then went on to have a great day...even at school.  As for me, I called his teacher to warn her of his seizure activity.  I hovered around Leesburg today anticipating a call from his school (and did not get one, he was fine).

No need for this kind of adrenaline rush...I am content with riding an actual roller coaster for that and not watching Brayden go through these seizures.

Seeing Him

Brayden is blind.  This was devastating news for me when he was just a tiny baby.  Amongst all of the other diagnoses that Brayden has been given over the years, being blind seemed to upset me in a different way.  The medical things were all upsetting and scared me but being blind too...

I worried that I would not be able to connect with him.  Looking into my boys' eyes is something special...looks and connections that only moms have can with their children, without saying a word.

Many times over the years, I wondered if Brayden had a connection to me, as his mother.  Yes, he knew I could comfort him, take care of him but could he feel my love?....which was hard for me to know since he cannot reciprocate love in a typical obvious way.

I love him deeply.  But this past few months it has become even deeper.  I am seeing him more.  Seeing his personality, seeing and feeling his connection to me.  His love for his brothers and daddy (although he has always loved to cuddle with his daddy).  I can finally say that I feel connected with him.

He has really matured the past few months.  With this maturing, I have been able to connect with him more.  I miss him terribly when he is at school, whereas the school time in the past was a nice respite for me.  And he has been doing really well at school this year so for once I am not worrying the entire time he is at school that he is miserable.

He is more content these days; spending less time being upset.  He is not as miserable, not as disrupted constantly by seizures, not recovering from ER trip or hospital stay.  He is able to just be himself more.  I can see his personality more and more, beyond him showing us his dislikes (which seemed like everything for a while, other than his bed).

Little things his does makes me laugh and warms my heart.  Seeing the tiny accomplishments he makes, like his hands and arms being more active and intentional.  Even his facial expression are great!  He just cracks me up because he can act like such a grouchy old man.
This day, I opened the blinds in his room so he would start waking up a bit (light does bother him a bit).  Well, apparently he was going back to sleep and he figured out how to make it happen...

The little stinker got his arm up and over his eyes to block out the light from the windows.  I have NEVER seen him do this.  I had NO idea he could do this.  Oh I just wanted to squeeze this cuteness!

Then there is football, he is not a football fan (a post about that later).  This day, he was exhausted after the football games, he passed out asleep after a big stretch and apparently too tired to complete the stretch and he left his arms extended.

I think he was trying to make a point that football was too much for him...

Lift in the rain

I believe the lift moves slower in the rain.

I feel terrible for Brayden to ride the lift when the rain is pouring down on him and there is nothing we can do it help...other than cover him with a giant poncho (learned to use poncho because we do not want his wheelchair wet too since he sits in it all day).

Oh how he loves the poncho...not really, he is not pleased with having it around his face and he lets it be known.

Even the little parts of his day can be difficult...riding a lift in the rain.