tough times

Yesterday was a pretty tough day.  I didn't expect it to be such,but geez it sure turned into one.  A couple of my awesome coworkers had asked me to talk to their club, as they are the sponsors.  Since Jake was inflicted with this dreadful disease, these ladies have been there supporting ALL 4 Jake every step of the way.  This year , their club decided they would make purple key chains to sell and all the proceeds would go to the Epilepsy foundation.  these kids and working moms, newly weds, and young teachers have stayed after school, spent time on weekends, and even used their own money for our cause.

So yesterday I went , as they made purple key chains, to introduce Jake and tell them a little about Epilepsy.

No big deal.

Now, those 30 minutes, are haunting me.

I LOVED being there for the kids.  I think they saw me as some strong person and Jake as a normal kid.  The questions they asked were absolutely amazing. 

But, I felt like a little insecure squirrel.

 I have not been in that place in a LONG time!  I have remembered and reminisced, but not like this.  watching Emmet's video with my peers and the students and telling them about Jake, I again caught a glimpse of what he has had to conquer.



Unfortunately, now I am more afraid than ever.   Afraid the beast will show his ugly face again. 

I can't stand that guy and what he did to us.  I hate those memories.

I hate that when Addison hears a siren she goes into fetal position and bawls hers eyes out, no matter where she may be.

I hate what he has done to our family.

I hate that we have a story to tell.

I hate this beast!

But I do love that I have over 100 Doose mommy and daddys telling, sharing and fighting for our story right now in DC!

The Doose Team has taken over DC this weekend for National Purple Day in hopes of turing that White House Purple!

All of this did happen for a reason, no matter how hard it is/may have been.



"Fall seven times, stand up eight"
Japanese proverb

Addi's story

It's been a while.

I feel like since Jake is doing better I don't have a reason to write.  Like people don't want to hear just the same ole' stories about what's going on in our life.  I struggle with things to put our there to the "public."  Like the negative, the worry, the pain, is a much better read than what I may have to share these days.  Don't get me wrong, we still struggle...in many ways, but gosh, looking back, I can't believe where we have been.  I know I say that often too, but today was just hard.....more on that tomorrow.

Because I struggle with his so much, and tonight I read a story of Epilepsy that struck waaayyy too close to home, and I am still trying to process all of it, my precious, sweet, 7 year old, and Jake's big sister will tell her story tonight:

Exodus 23:25



"So you shall serve the Lord your God, and He will bless your bread and your water. And I will take sickness away from the midst of you."

Gives me chills

I took jake to the neurologist on Tuesday.  It has been a long 3 months since our last appointment.  Not much ever changes at these appointments....I ask questions, give Jake updates, he checks reflexes and such and we are on our way.  Why then, do I count down the days in anticipation of the next appointment?  I am not quite sure of the answer to this question.

With that being said, this appointment was a tad different than most.  Usually, or at least , the past several appointments, I report that Jake is still having nocturnal tc's.  Most of the time 2-5 a night, 3-5 times per week....blah, blah , blah.  We then always agree to stay our course of treatment and hopefully the beast will decide Jake's brain is no longer taking renters.

This time though, Jake reported his news.  Jake told Dr. H that he has not had a seizure since Thanksgiving Day!  That's 3 months!!!Talk about giving thanks!  Dr. H grinned an awesomely huge grin!  I then, had nothing to tell him...nothing that is except, I had been called in for a teacher conference.  Scared as I was, it was to be told Jake is doing GREAT!  She informed me that since November his skills have really improved.....coincidence?  Jake has also stopped taking his adhd medicine and is doing just fine! coincidence?

As you know, I have been MIA from blogging.  As you also know, I am very superstitious.  I have been extremely concerned and worried about sharing our good news, as I might "break the streak."  So not only have I not told you guys, nor have I told family...even Matt.

Back in November, at our last appointment, I told/asked Dr. hernandez about starting some herbal supplements.  He agreed, but suggested I try Bcomplex first, as it is cheaper.  I tooled around a few days, until I finally was able to get to the store.  I picked up a cheap bottle of B vitamins, gave them to Jake, thinking nothing of it.  It is from that day, or one day after, that we have yet to see any seizures!

As you can imagine, I am on cloud nine!  Just soaring! My cheeks hurt from smiling so much. 

Sooooo, yesterday I sat in my office and was reliving my excitement with coworkers.  About this time, a student came in speaking of some bird outside my classroom window.  Yeah, yeah, bird, shirmerd....we go about our business and continue chatting away.  Then another teacher I share my room with comes in and is grabbing her camera, as not only is there a bird outside our classroom window.....there is a Hawk.  I instantly get chills and am motionless.  I literally couldn't move.

Finally, when I compose myself, I race two doors down,  sure enough, there, staring into our classroom, perched on the nearest branch towards the window, is the most beautiful, calm, baby hawk.



That hawk, supposedly had been there since I left from school to head the appointment the previous day.  After I taught my lesson for the day, i turned to say goodbye to the sweet bird, and he was gone.

Amazing!

click to here to learn why this is so inspiring:
The Hawk


God is good.

"He is a wise man who does not grieve for the things which he has not, but rejoices for those which he has." - Epictetus

Christmas come and gone...

So another Christmas is in the books.  It's very cliche I know, but time is sure flying by.  I am trying to suck up every possible moment with these kids, as I feel like we have lost almost 2 years of our life to the damn beast.  Time spent worrying about damage from seizures, waiting for the next seizure, and wasted in ers, clinics, doctor's offices and ambulances.  Time I would have much rather spent cuddling, playing, swimming, reading, and just watching them.  Honestly, even if if was time spent being annoyed, irritated, and overwhelmed, I would have taken it, if not caused by this monster, we call Doose

I had planned to really get caught up on blogging, as I have had two full weeks off from work.  I envisioned waking up, watching cartoons with the twerps, while sipping coffee in my pj's.  However, none of this happened, including the obvious...no blogging.

luckily...I have NOTHING exciting to report...not ANYTHING at all, if you catch my drift.  If you have read previous blogs you likely know what I am saying here, without saying it!:-)

Since I don't have many words, except reflections of Christmas' past (2009), (2008), I simply added some pictures that tell our bits and pieces of our break to you.



On our way to church





the twerps





the twerps AFTER screaming SANTA at the top of their lungs





brothers enjoying Santa's loot





Santa dropped a puppy down the chimney for Addison- "Mia" Hamm





GUNS!! one of his all time favorites gifts







tools! another hit!





 I am so happy to report a very uneventful Christmas this year.  Three kids, two dogs and a house full of family and friends is soooo uberly uneventful compared to helmets, seizures, diastat, bumps, bruises and blood.  For this we are thankful!  Praying for many more uneventful days.

Christmas is glorious enough, but made even more so as we remember and reflect on Christmas' past.

We are blessed!

Happy new year to you and yours!

“I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed.”

Amazing

So I have yet to share anything about Jake's amazing Wish trip.  So here are a few pictures of the little man getting his wish....Surfing like Scooby Doo!  I want to add, both kids and even their old fart parents picked it up quite quickly.  The instructors even said several times..."we dont deserve to be paid, we did nothing for you guys!"  our kids are rock stars!

                                                                          Wishing

                                                                 "we're leaving....on a jet plane....

 

                                                                 now that's first class baby

                                                                Ahhhhh ocean!



Heading out to catch some waves

surfing on the first wave!

 

Rockin' Daytona

Hard day's work...sacked out

If you can imagine it, you can create it. If you dream it, you can become it.

William Arthur Ward

Epilepsy awareness month!

Welcome November! Although, you have already come on in with a whirlwind and are blowing through much quicker than I appreciate, I do love you.  I love the feel of Fall in the air.  The excitement as the school year is underway, the thoughts of Christmas right around the corner.  And the past couple of years, I love the opportunity to make people aware, as November is Epilepsy awareness month!

Never before have I cared or thought about the color purple.  I  even quite hated it.  I cringed as Addison would beg for purple shirts, shoes and clothes.  It had become her favorite color just before the damn beast made an appearance.  Foreshadowing? symbolism? maybe.....

Now I can't find enough purple to throw in my closet.  I even get my nails painted shades of purple.  Today, Veteran's day, I even resorted to literally running down another mom at the boy's school, as she was wearing a ribbon.  I thought the deep blue color was actually purple.  I stalked her throughout the halls and told her Jake's story, thinking she would have one to share as well....until I learned her "purple" ribbon was actually a blue one honoring the veterans.

I have found I love this month, as I have an excuse to tell stories of Epilepsy, share the facts, the horror's, the unknown and the misinterpreted.

I have said it before and will say it again...Jake was "given" this for a reason.  Right now I believe the reason is to educate and inform.  I know his case has already had a huge impact on many.  This is obvious , by the size of team "All 4 Jake" at the stroll.  One of my bestie's , Brandy, has also taken an amazing interest in the cause.  You know that she turned a buiding purple, but also has become a mentor for the Epilepsy foundation in Florida, and now is even organizing a stroll in St. Petersburg.  Starting from scratch, organizing a city wide stroll for epilepsy.....man that's mind blowing.  I don't know if that would have ever happened had we not almost lost our little boy to epilepsy.

Did you know?:

For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.

Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.

It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.



The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.



In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
 

Epilepsy in America is as common as breast cancer, and takes as many lives.
 
public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis)
 
These are just some of the facts I never knew about the disease "that's easily cured with a simple pill."
 
Today and everyday, we currently deal, not only with the lingering seizures, but almost more annoyingly the learning difficulties , ADHD, loss of motor skills and never ending anxiety caused by  the 100's of seizures a day for months on end that Jake has endured.  I was led to believe once the seizures wee gone or even improved..POOF...life is normal again...far from.
 
Although, I can swear up and down Epilepsy sucks, if Jake was given it to further educate one of you, I will take it.....if we have to.:-)
 
Become aware...It's not what you think.
 
When I hear somebody sigh, "Life is hard," I am always tempted to ask, "Compared to what?"



- Sydney J. Harris

Purple

It's November. One of the most important months of the year. It's Epilepsy Awareness month. All purple, all the time. Everything Epilepsy to anyone and everyone. Spread the word. Talk about it. To your co-worker. your child's teacher. your mom. your neighbor...anyone. JUST Talk about it. Learn about it. Speak up about it.

My BFF, Brandy lives in Tampa. They have a (yes "a")skyscraper downtown called the SunTrust Financial Center. It's a well-known building, for it is continually lit up, but showing it's ability to be ANY color of the rainbow. People ask why it's lit the certain color and then it snowballs from there and the city is soon aware. Well guess what color it is during this great month of November? That's right...it's PURPLE!! PURPLE for EPILEPSY. And it made the news...see the link below. Then ask yourself what are YOU doing to show your support for PURPLE?

Visit this link to see it on Tampa's local news!

looking back...

As I was sitting here reflecting how fortunate we are to receive such an amazing gift from Make a wish and telling mysef how much we don't deserve it, I happened to find some pictures from "back when."

I remember when we started this wishing process, we were told initially that epilepsy doesn't qualify.  Apparently there were others who disagreed.  They thought Jake's type and severity certainly did qualify.  "They", I think was mainly Dr. H. I am not for sure, even to this day, how Jake actually ended up qualifying, but i still remember that call telling us that Jake would be getting a wish. 

The voice on the other end said something about Jake's disability being dramatically life  threatening.  I specifically remember not hearing what was being told to me by Make a Wish, but worrying that I could not get a call in the neuro fast enough.  life threatening?! 

Throughout all this, I think I have had blinders on , as to the severity of Jake's condition.  I think the "mommy mode" took over and I didn't actually grasp what was happening to my son.

Wow, what a road we have traveled.

These are just a few of the physical beatings the beast has given him.  Unfortunately the Damn thing has also done quite a number on the inside as well.  However just like he fought through the physical pain and scars, he is climbing mountains cognitively as well.  For almost 9 months, this little man was basically in a "walking coma."  He barely had intelligible speech, drooled and could barely hold his head up on his own.

Now there is nothing this guy won't try.
He's one brave boy, that Jake.  Certainly my hero!

Wishing...

Almost a year and a half ago Jake was granted a wish by the wonderful people at Make Wish.
Soon Jake's wish will be coming to fruition!

Jake wished to go "surfing like Scooby Doo!" and his wish will be coming true!
Not only will Jake be surfing, but also swimming with dolphins, visting Sea World, and attending a Luau.
We are super excited to get the festivities underway.

Make a Wish has just been amazing to us!

Our experience with make and Wish and Jake's wish givers has not been just about "the wish."

They have allowed us to see a Dallas Cowboys game, build Gingerbread houses, attend Ink parties, get involved in photo opportunities, and most of all gain new friends and some amazing heros and role models for Addison and Jake.

The kids dearly love everyone involved in Jake's wishing experience, but his wish givers truly hold a special place in their hearts.

Kristin and Christine have just been amazing to us.

They have certainly gone up and way beyond anything and everything we could have imagined when first starting this wishing journey. From Christmas cookie parties , visiting to welcome Cooper, bithday ice cream parties, over flowing presents to the most loving hugs and kisses,

these ladies hold a very special place in our hearts. They are surely two amazing ambassadors for such an awesome foundation.

(Jake in the "wishing room" making his wish)

Remember today, for it is the beginning of always. Today marks the start of a brave new future filled with all your dreams can hold. Think truly to the future and make those dreams come true.”

moments like these

Moments like these want me to cry my eyes out, scoop up my babies and squeeze them so hard it hurts.  Moments like these make me thank the Lord for what I have. 
Moments like these make me want to kick the ever living heck out of the freakin' beast!

last night as I nonchalantly, or even more so, annoyingly told Jake to go to bed and assured him I'd check on him in a minute, knowing one minute actually meant 10 or maybe even 20.

Matt and Addison were at soccer, Coop was already fast asleep.

I was "busy" doing something mundane,  probably washing bottles and getting ready for the same revolving door , that is our day.

When I finally got the chance, I turned on the hall light, so I could peer into Jake and Coop's room,without waking either of them, lay with Jake a minute, get back to my "business", all without disturbing their slumber.

As I peer in, Jake is sitting in his bed.
 His head is bowed.
His hands pointed at his chin.

I asked "What are you doing Buddy?"
He responded, "just asking God to take my seizures away."

My heart instantly broke into a million pieces.  Our little man was begging to make his life normal.  Jake has never really said he knows when he has seizures, but last night proved to me....he knows....he knows how his life has been changed.

As I sit down to type this entry and maybe even brag about how kind the beast has been to us lately by not showing his ugly face for a while, I hear it.

 I hear that God awful gasp and then the bed rocking and convulsing over the monitor.

This however, is not the "usual" 5-10 second seizure.
This one is a good 30 second doozy.
This one  makes me scatter and find a magnet and even the Diastat, that we have not had to use in so very  long.
This is one, in which his postitical is a good 1-2 minutes. 

This is one I have not seen in a long time.

Damn you beast! Just when I think you may be tired of picking on my kid, as he is fighting and doing his damnedest to kick your ass, you come and show your ugly self once again.

Damn you!

"It is at moments like these that I know my what my purpose is in life. I am here to love you, to hold you in my arms, to protect you. I am here to learn from you and to receive your love in return.I am here because there is no other place to be."
~Nicholas Sparks

9-11

Every year on Jake's anniversary of being taken off in an ambulance(twice), we take cookies and muffins to the fire station.  I say every year, but I guess this is only the 2nd year.:-)

This year we didn't actually make it on his anniversary.  We had great intentions, but never actually made.  So we decided what better time to acknowledge these heroes than on the anniversary of September 11th.

I hesitate calling our community helpers heroes, as this is their job.  This is what they signed up to do.  They signed up to beat down fiery walls in the middle of the night and to cut cars open to save a civilian inside.  They signed up dive into frigid waters to rescue a drowning child.  This is what their job is.

This is what their job is.... but they are truly heroes in my eyes. 

These community helpers giving an iv of rescue meds to a seizing boy in Plano.

These men and women stopping a heart attack  victim from becoming a fatality in San Angelo.

These heroes climbing stairs  and doing all they can to save the lives of thousands in New York while risking their own, every step of the way thinking of the loved ones the could be leaving all alone at home.

Regardless of where they are and what they have done, It is certain they have changed a life in their path.  For this they are heroes to me.

Here are some pictures of this years visit to Plano Fire Station #4 on September 11th, 2010.

He is a fireman.

He puts it all on the line when the bell rings.
A fireman is at once the most fortunate and the least fortunate of men.
He is a man who saves lives because he has seen too much death.
He is a gentle man because he has seen the awesome power of violence out of control.
He is responsive to a child's laughter because his arms have held too many small bodies that will never laugh again.
He is a man who appreciates the simple pleasures of life - hot coffee held in numb, unbending fingers - a warm bed for bone and muscle compelled beyond feeling - the camaraderie of brave men - the divine peace and selfless service of a job well done in the name of all men.
He doesn't wear buttons or wave flags or shout obscenities.
When he marches, it is to honor a fallen comrade.
He doesn't preach the brotherhood of man.

He lives it.

M.I.S.S

For about a year now some of my bff's and I have been discussing doing a bible study together. Since we don't live near each other this has proven to be quite difficult. We have tried to get it going on email, but "life" happens and the hectic days of being a moms took over, so unfortunately it never really came to fruition.

However, my friend Leslie, has now set up an awesome blog.

The blog is a place for us to not only vent and discuss what we have read and what the reading means to us, but to also, and most importantly, a place to learn how to come closer to the Lord during these fast moving times.

I am particularly excited, as trying to cope with a special needs child, realizing what that means to our family, and adjusting to this situation has proven to be quite difficult.

It has certainly opened our eyes to the fact that life is certainly nothing we should take for granted and that we should always live each moment to its fullest.

However, sometimes, to balance living this way and "everyday life", that is....school, work, soccer, husband traveling, normal parental duties and especially those that go along with caring for Jake, has proven to be quite difficult.

If you are a mom, wife, sister, or friend come learn with us how to juggle all that goes along with being the best of each.

This is your invitation to come on over and learn with us!

Leslie has set up a reading schedule that is not at all rigorous.

Stop by and join us...we would love to have you!

M.I.S.S.- Moms searching for inspiration, spirituality and support


"As Jesus and his disciples were on their way
he came to their village where a woman name Martha opened her home to him
She had a sister called Mary
who sat at his feet listening to what he said" Luke 10:38

Week of firsts

Twas the night before school...

 

So many "Firsts" have happened the past couple weeks.  It has been very exciting, anxious and tiring around the Peter's household.

Let's start with the most obvious first....The first day of school!!

Addison started her first day of 1st grade!

Jake started his first day of Kindergarten! and..

Sweet Coop started his first day of school too!

(There are a couple other firsts I will post in a couple days)

The anxiety building up to these HUGE milestones has been tremendous!
Last year as Addison entered the big world of public school as a kindergartner was admittedly tough.  However, this year as a 1st grader the fear, anxiety and overwhelming feeling of time passing too quickly hit me like  a load of bricks.  What a huge difference a year makes.

My little princess went from not being  able to read a year ago, to now digesting chapter books, such as Ramona and Beezus, on a regular basis, to winning soccer championships that qualify her to play at Disney World, to being the sassiest of teens, who will argue, with logic ,at the littlest of things.

This first grade transition has been sooo much harder than kinder.

On top of this huge leap, we obviously have Mr. Jake making a big leap into the real world as a kindergartner as well.

Jake has been in special ed receiving occupational therapy services in the school and some speech and ot services outside of school, because of the trauma incurred by the damn beast!  So we were/are very concerned about this move into school.  It is because of this he worked his booty off at a good friend and great teacher's house this summer.  he worked with Ms. Kim 2 days a week on kinder readiness to help prepare for his big journey.  She was amazing and he learned so much from her!  He was very sad to learn on the first day of school that ms. Kim was not going to be his teacher all year long. 

On top of this confusion,  a couple evenings before we had visited Jake's old school, which is Addison's current school.  She had supply school night and the much anticipated class rosters were posted. 

As we were at their school we had to swing by Jake's old classroom. 

Much to our surprise, not only was his beloved teacher there , but also her two helpers. 

All three whom Jake is dearly in love with. Ms. Keavagh he even calls his bride!

So you can only imagine how confusing seeing all these great friends a few days prior and then going to school and not recognizing any familiar faces was for him.

We helped ease him into this "strange place" by assuring him that Cooper would only be a couple classrooms away and he had to take care of him.

 

The irony of "strange" is that his "new" school isn't really so new.  This is where Addison and Jake went to daycare.  The same school Jake was attending when he had his first seizure.  he didn't have  it at school...that we know of...but walking through those halls for the first time was creepy none the less.

The teachers and staff there are ever so loving! They all ran and gave Jake huge hugs and kisses upon his arrival.  They asked a million times where and how Addi is doing.  Genuinely kind, caring, people of the Lord.

Honestly, the day was probably a million times harder on us than the little ones, but it still did not help me from being an emotional wreck.  I counted the minutes until that 3:30 bell rang and I could run to get my twerps!

The day was made as I picked up each kiddo and they all had the BIGGEST smiles on their faces!

Jake jabber jawed nonstop about his amazing adventures and good friends, Addison strutted her stuff as only a BIG 1st grader could do, and sweet Mini Coop cooed and giggled the whole way home.

Be still me heart is all I could think that first night...be still my heart

God didn't promise days without pain, laughter without sorrow, sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way.”