A very needed reminder...

I have been very absent from this blog for a while...life is busy.  I will try to return soon. But in the mean while, an Abrazo adoption friend posted this on FaceBook & I so saw myself in this same situation but different.  After these two pictures read on...

This is so me at times! Oh, the conflicting emotions. From Today's inCourage: Getting Home. Two nights ago, I was in a hotel room in North Carolina. 
I had some work things to take care of when I got done, and it was late when I finally sat still, but when I did, something snapped in me. I sat on crisp white sheets and imagined what my kids might be doing. I pulled my phone out and mapquested how far I was from my house. 8 hours and 3 minutes. Too far to try and figure out a rental car and start a drive at 9 at night.
So I checked airlines to see if I could get home sooner. Then I called Delta and talked to them about it. It’s a long story but the bottom line is they don’t really care if you miss your kids.
I wanted to go home.
I could imagine running in the door and them all clamoring over each other, abandoning their neighborhood friends and weeping at the mere sight of me. It had been almost 40 hours since they had last seen me, so these are all viable options.
Long story short, I got on the 7:15 am flight after forking over my fifty bucks. I pulled in my driveway and raced to the back door. Charlotte screamed, “MA-MAA!!!!” and ran to me. My sweet nanny was there and she was so excited because she knew I was desperate to get home. I asked where all the girls were and went to each one individually, awaiting my “6 hours early” party. The response was mediocre, I’ll just say that. Nonetheless, I was so happy to be home and settled in quickly (translation: started laundry and told Charlotte to stop eating crayons).
I had a great day with them and soaked them in fully, but that night as I climbed into my own wrinkly bed instead of the crisp white hotel one, I couldn’t help but wonder what in the world God was doing with me. How many lives can one person live well? Here’s the bottom line.
We are ambassadors of God.
And what that means is that we will sleep on different sheets. We will cry because of the cost. And while we know it is a privilege, we will still ache for home.
The truth of the matter is, my children didn’t throw me a party when I got home because they were at peace with my being gone. I know because I have asked them time and time again. It isn’t that they didn’t miss me, but rather because they have an intuitive sense that I’m showing Jesus to them in my obedience. They know I prefer the wrinkly sheets and the messy kisses to the stage and the plane.
They are steady in my love and gracious with my calling.
But they know. They know it wounds me.
Todd stopped by the bookstore on his way home from the airport (he flew in from Michigan a few hours after I got in) and bought all of his girls a little gift. Mine is a book of quotations by Mother Teresa, and just this morning I came across this beautiful quote:
“We have to love until it hurts. It is not enough to say, ‘I love.’ We must put that love into a living action. And how do we do that? By giving until it hurts.”
Jesus Christ has asked no less of every single one of us. It will look different in your life than it does in mine, but the heart of the matter is the same. We must put our love into living action, and we should not expect anything else than a little hurt to come alongside. It is the least we can do to offer of ourselves, and a beautiful reminder that we should be grateful we can give it at all.
I won’t expect streamers when I finally get home. I don’t mind if there aren’t any parades or fireworks.
I hardly think He will worry about those details.
When I wake in the middle of the night, may I remember that my time here is short and soon I will be home. And I pray He whispers those words to me. The words that remind me it is all for Him and the wounds are minor in the battle for eternity.
Well done, love.
Well done.
Wherever you are today, you have a choice. My prayer is that you put your love into living action, ever mindful of the God who calls you heavenward…
By: Angie Smith

good articles....

When something seem to be bugging me, I just happen to come across particularly good articles that hit the subject on the head.  Just like this article: What to say to Special Needs Parents...it is written by Maria Lin who wrote, 7 Things You Don't Know About A Special Needs Parent.  Both are really good articles. I am reminded every now & then, ok more often than not that the challenges we face are our challenges & other families with special kids have their own battles.
Lately, we are battling the fact....

•  that even though our son is 6, he will be riding in a 'car seat' for many years to come
• that Hayden will need special adaptive seating for eating for years on end or until he can control his body (truck) at the table & we will be feeding our son most of his meals to prevent aspiration
• that we will wrestle with IEP sessions yearly to get the least restrictive education setting for Hayden for years on end
• that one of us is always on Hayden detail for seizure patrol & escape precautions

And it's Friday night...so many changes to the end of the week now that we are older ....I grab time on the treadmill or outside running later in the evening, we eat late (like after 8pm), I do laundry/catch up on mundane chores...I remember the younger years of going out on Friday evenings, movies/ shopping/ eating out... but now our lives really are dictate by how Hayden is acting/behaving, etc.

We have visited the Children's Rehab Hospital several times in past couple months & during our time there I am reminded how blessed we are.  But that doesn't stop the demons of dreaming for normalcy in our life.

Car Seats & more

Have you ever tried to wrangle a monkey into a car seat?? Or wait an octopus & all its tentacles into a car seat?? That is what we are dealing with these days...keeping Hayden in his car seat & safe while traveling.  It isn't pretty when I am driving 70+ mph up & down the interstate for Hayden's various appointments & I view him in my 'spy eye', i.e. small extra mirror focused only on Hayden,  wiggling his way out of his car seat...it is simply amazing I do NOT have more gray hairs.
So what are we doing to solve this problem??? We are working with our close by children's hospital & the OT dept to find an appropriate car seat for Hayden.  Maybe by the time the next school year rolls around we will have our new car seat...fingers crossed!

We have traveled through yet another IEP season for Hayden with a few changes/suggestions/tweaks along the way.  The one thing that I have learned through this educational process for Hayden is we NEVER, EVER sign an IEP during  the initial IEP meeting.  We will be taking our time to review the 2012-2013 school year IEP & process all the information prior to signing it...it's the right thing to do for our son.

Autism walk...our family team was able to raise $2000+ for our area's Autism Partnership.  We were simply blown away by the generous support of family, friends, & co-workers.  There were 1000+ at the walk/run & I've hear that close to $30,000 thus has been raised for our area's Autism Partnership.

Shayla is into the Spring soccer season.  She seems to enjoy it...but then again she is a pre-teen with all those joyous moments.  She is counting down the days to the end of this school year, but has told us that she doesn't want to leave school.  I'm think year around schooling would be good for both of our kids.

Summer plans???  Not a lot this year...Hayden will fortunately be attending an intensive speech camp for 5 weeks followed by a week in school (he misses the other weeks due to speech camp) & hopefully finding a 'helper' to keep Hayden occupied & stimulated.  And lets face it keep Hayden safe while we do our summer evening stuff.

Trying to figure out some things for Shayla to do this summer...some meaningful things, purposeful things.
That's all for this go around.

Autism walk, etc

So lasst weekend was our area's Autism 5K run/walk...and it wrapped up our families efforts in fund raising.  I hit a brick wall this past week...I was e-x-h-a-u-s-t-e-d.

Sometimes that happens, it happens to all parents, it happens more often to parents of special needs kids...we burn the candle(s) at all sides for too long.

Hence, there have been no post from me...I've been taking time to recover from the craziness of the past 2 weeks.  I have deadlines & appointments this afternoon...so more about the walk/run later!

Sunday late

I'm a day or so behind or heck half a week...the week got busy...I had a night of call which meant I was up for close to 24 hrs from Thursday to Friday (yep, I felt like crap),  Hayden had a doctors appointment, & yesterday was busy with normal Saturday stuff---soccer, errands, keeping Hayden occupied...when does school resume??  Hayden goes back to school on  Monday...thank you JESUS!  He has been completely out of his routine with Spring Break & wow, it has NOT been pretty!   We were grateful that Tim was off of work this past week to give his mom a break from Hayden detail.

We are starting the week of the Autism 5K walk/run. I have been working on running for many weeks.  I'm not a runner.  Never have been, have hated running...but by doing the couch to 5K program I can honestly say that while I don't LOVE running...I am enjoying the 'sport'.  One of my facebook pals calls running 'wogging' aka walking mixed with running & essentially that is what I do...some days I run more & further than others, but that's ok I am doing it 5-7 days a week for more than 30 minutes at a time.  I had to skip today since I'm on call & my quad hurts like heck!  Fringe benefit I suppose of being on call today was getting a side consult with one of the orthopedic guys who is pretty athletic....moral of the pain, not enough stretching, augh!  But you can't keep a good one down.  I've been stretching the quads off & on all day & I'll be back to my routine tomorrow....I've got a 5K to run on Saturday!

I've thought a lot lately about our faith base & how as a family we have grounded ourselves in our faith to keep us strong through out Hayden's medical issues.  We are fortunate to be part of a church that has been our foundation since before  Tim & I married.  Our church family has been with us through many roller coasters of our life & continue to keep us grounded in the word of God.  The one thing that does bother me is that over all most congregation's don't grasp the needs of families with kids with special needs.  Autism is baffling to all--us included--but it is hard for places of worship to understand the needs of families who have children on the ASD.  I have read Dancing with Max by Emily Colson... in this book Emily talks about how it is hard to go church & be accepted by her congregation due to Max's autism.  I had tears peaking over the edge of my eyes as I read this book...I totally get her pain.  While we are blessed at this time to have a 'class' for Hayden to attend while we attend church services & Sunday School, Tim & I talk weekly about the next years & how we will change our Sunday routine to accommodate our family...what works for us now & in the future doesn't always work for others. I found this one blog writers  thoughts on churches & autism christianitytoday.  And this blog talks about overcoming obstacles in religious settings with autistic children.

I hope this week is better in the department of writing...we'll see...no promises :).

One evening recently this rainbow appeared in our backyard...pretty obvious that God is always with us & promises will be kept.

Therapy, etc

In celebration of AUTISM awareness month: So far as medical science is aware, there is at present no cure for autism. That's not to say that people with autism don't improve, because many improve radically. But even when people with autism increase their skills, they are still autistic, which means they think and perceive differently from most people. Children with autism may receive many types of treatments.

It's now 10:30 pm Tuesday & I've been up & going since 4am.  Tuesday's are just busy & full with Hayden's therapy, Shayla's soccer, WW meeting, trying to squeeze exercise in & wow, just doing all the normal things to make our house function.

Therapy is an important part of Hayden's life & routine.  He needs it, he expects it, he thrives in that environment. Hayden receives some therapies through school based services & we provide some private therapy as well.  Our thoughts are the more Hayden is immersed in speech & occupational services the better he is.  We are hopeful Hayden will be able to participate in an intensive speech camp again this summer.  

I'm tired & need to go to bed so I can repeat today's schedule again tomorrow.

Just know that kids on the ASD, need lots of therapies &  you as parents need to get along with their therapist...it's a relationship that is two way & in the long run very beneficial to your child.

Ramblings about AUTISM....

I keep thinking about my Honey...her birthday was last week.  She was an educator & life learner until her last breathes.  When Hayden was diagnosed & placed on the ASD, Honey was also looking for & reading all she could about Hayden's medical concerns & learning about epilepsy & ASD.  She would clip newspaper articles & send me 'stuff' to read.  I miss those surprises in the mail.  Honey didn't care about labels.  Honey cared about Hayden (& her Shayla too!!).
To our kids, Honey was GrandHoney...she loved our precious kids.  With Easter just this past Sunday, I couldn't help but think of my Honey...her birthday usually falls around Easter & she loved Easter time.

I was fortunate during Sept 2010 to spend a one of Honey's last good weeks with her.  It was a special week for us.  I was also able to begin some processing about the need to care for ME...it took some growing time for those strong desires to come through.  But I needed to have that time to see my needs coming through.

So that leads me to this:  Having a child w/ autism changes the family dynamics. Insist that you & your spouse spend time alone together & get breaks as role as care take & therapist. Don't be afraid to ask for help. You will be a much better parent if you have help & a much better spouse if you have some free time--Overcoming Autism


I have been on a journey the past 15 months.  I joined Weight Watchers in January 2011.  It was time for me to take back my life.  I needed to get back on top of my game & gaining control of my weight as well as eating (a life long struggle) was where I knew I had to start.  I am actually running, ok run/walking most days now either outside or on the treadmill.  I have put about 800miles on the treadmill since starting Weight Watchers & shredded one treadmill belt, whaoo!!  I have been at my Weight Watchers goal or below now for SEVEN months now!!!  I still have lots of room to grow in the exercise area but trying to squeeze it in is next to impossible, but you know what they say, you do what is important to you.  Now, trying to figure out how to get that in with everything else going on in our house...phew, it makes my head spin.   It would be nice to have a 'personal' trainer to put me through the moves daily...keep dreaming girl ;).


The time I have been given to work out is what I need...it has made me a better mom, wife & employee. Tim & I work HARD to get at least a date night once a month & make plans for respite weekends every few months. 
Time to take care of the house stuff...Tuesday's are early day & a long day for me.

Easter Sunday---we do clean up pretty good

Hayden's Easter basket

Shayla's Easter basket

Brown family Easter 2012
(Not sure what Hayden was checking out...but he was intent on following something in front of us)

The kiddos Easter 2012

It takes a village....

Through out our fight with ASD, we have learned that it takes a village to make our family function/run.  We would not make it through the day or the week if it were not for the help of our parents.  Between my crazy work schedule at the hospital & Tim's night work hours, we just would NOT survive wait--one of us would not be able to work.  We call it 'Hayden detail'...who is on Hayden.
This NPR article although a couple years old, the information is very good.  I'd encourage you to read it.   Grandparents Often Help Support kids with Autism

Autism & Epilepsy

In celebration of AUTISM awareness month: Studies have shown that as many as half of all kids with AUTISM have some sort of seizure disorder. It puzzles all sides of the medical field. Some w/ ASD have intractable epilepsy while others have only 2 seizures in their lifetime.---Dr. Sarah Spencer & epilepsyUSA

So let's chat about the two things in our house that cause chaos...no, they just stink...wait I have a better word for the two of them because together autism & epilepsy just suck...sorry, but I had to say it...if Hayden O-N-L-Y had one disability life would be oh so much easier...but he got handed one of the loaded decks of cards & unfortunately has BOTH!!

We have been working with Hayden's neurologist since he was 2yrs old...that's 4 years people to get his seizures under control/make him seizure free.  Hayden currently takes more seizure medications than most people do & should have some of horrible side effects from them...but he doesn't--thank the Lord!  Hayden has been on many different seizure medications (I've forgotten the number of combination of medications that Hayden has tried now), tried the ketogenic diet & is not a candidate for brain surgery.  However, a year ago Hayden was in the throws of the keto diet & not doing so well (spiking up to 200+ seizures in under a month) while today with a different combo of medications he is around 20 seizures a month...so that is progress.

Non-verbal Autism combined with epilepsy, is difficult because we have no idea when or if Hayden is going to have a seizure, how he feels in the post-itcal (after a seizure) phase, nor if all the medications he takes have any of the weird side effects that we can't see (feel funny in the head/upset stomach/etc).

Autism affects all parts of our daily life from sleeping, eating, school & work routines.  When you add another disability on top, it does make life a bit more complicated.  We take each day as it comes.  We are blessed by the grace & love of the Lord...it is the only way we make it through, one day at time sweet Jesus.

One of my more favorite pictures lately...occasionally, we capture both eye contact & a SMILE.

I am just Hayden's mom (lol--doesn't that sound funny??) who has learned a lot about our son's medical conditions &  whose son has a medical file thicker than someone five times older than he, but autism & epilepsy are part of his puzzling medical needs... & as Hayden's mom I know when he sick, when he needs to be seen, when something isn't right.  However, I will say that thankfully, with my chosen profession I already knew some about seizures, & now I have learned a heck of a lot more but I am NOT a professional in the field, LOL....I leave the professional part of caring for Hayden to his doctors whom I have grown to trust & respect the heck out of!!

Autism & Epilepsy...I don't like these parts of the puzzle.

It is AUTISM awareness month....spending time with your other children who are not on the spectrum is very important. They need individual time apart from their sibling(s) to reaffirm their needs as well.

So in the spirit of letting Shayla's needs be met, she has taken off for a few days with Nanny & Pappa to go visit my sister & her family.  Shayla dearly loves being with her cousins & embracing the role of 'big sister/cousin' with each of them.  Time away from our chaos, gives her time to have some sort of normalcy which every body needs.

It is hard for any family with a child on the ASD to function 'normally'...what is normal for one family is so not normal for another family.  We rarely have a 'sit down' family meal...& that stinks...It is part of having a child on the ASD. 

It is a balancing act & while some days we lean to the left & some days we bare to the right but then other days we are just balanced...but we are a family & we just do the best we can do each & every day.

Shayla loves her brother despite his difficulties

Things about Autism

Once Hayden had been placed on the ASD, I stumbled across this book "Ten Things Every Child with Autism Wishes You Knew" by Ellen Notbohm.  I was like a sponge wanting, no needing to soak up everything possible to help our son in those early days of his diagnosis.  
As I was reading this book, it was like a light bulb would turn on & off as I turned each page because I would see something about our Hayden in the words the author had written.
So today I would encourage you to watch this youtube clip that someone has put to music covering:
Ten Things about Autism I wish YOU knew.
Have a great day!!

Autism Day...Wear some blue!!

It is World Autism Day & here is a link to check out the blue plead.  It's all about awareness.
So won't ya wear some blue today??

Autism Awareness month....

It's a new month.  We are hopeful for a better month with continued good health, allergies held at bay & pressing towards warmer days.
April is Autism awareness month.  Who do you know that is on the Autism spectrum????  Chances are you probably know several who fall on the ASD.  Hayden was found to be on the spectrum at age 25 months...while it has rocked our world, we also 'sorta knew' Hayden might be on the spectrum prior to his diagnosis at age 25 months.  Check in with me through out the month...my goal is post information about autism, ya gotta know & open your eyes & learn about autism, we need to be on top of our game for our kids who need us so much.
Want to know something staggering...follow this link to autism speaks to read the new numbers that will BLOW your brain...it is scary.  Autism needs us in a bad sorta way.
Watch for ways to help in the next day or so....until then, here is our Hayden & he is why we are so passionate about helping others.

This is who we work so hard for making sure Hayden has everything he needs

Life has not been a bowl of cherries...

I just don't know how to say it, w/out just saying...having a child with any sort of special needs is hard.  Life definitely isn't, hasn't been a bowl a bowl of cherries!!  Frankly, it can stink & has stunk lately.   And I just feel pretty overwhelmed lately...between doctors visits, test, pressing for other specialized testing, working with special services to get some needed equipment for Hayden...piles of paper work that need to be filed & followed up on, emails sent, etc.
Anyhow,  I've stumbled across this really great post written by a mom of a child with special needs...it pretty much sums up A LOT of what we go through daily, weekly, monthly...some of the same emotions, etc.  The article isn't long.  I invite you to read it...here.
Now I'm going to go burn some steam & make chocolate covered pretzels...mindless activity instead of filing papers, etc.

Oh and Hayden's repeated test two weeks ago was MUCH better...thank you Lord.

Testing Round Two

Tomorrow we will be taking Hayden back to the 'big' hospital to repeat one of the test that was performed while he was on the mend from his illness during the first part of February.
This month has not been kind...looking back at just how incredibly sick Hayden was during those first couple of days he was hospitalized makes us realize how blessed we are that his body bounced back so quickly.  Hayden is like a ball of fire...he bounced back so quickly that he got sick a-g-a-i-n last weekend...but with much less severity!  We are taking all steps possible to be very pro-active when Hayden begins showing signs of respiratory illness from here on out.  However, we do not like the way steroids make our all ready hyperactive child even more active...we can't even explain it the amount of energy that Hayden expels...it is mind blogging.  And being a fly on the wall is about the only way you could get a glimpse into our world.
Tomorrow's test will be a repeat swallow test.  Hayden is a mouth stuffer, who easily chokes on his food, who doesn't like to chew & let me swallow things whole...that being said Hayden's first swallow test showed evidence of aspirating or otherwise parts & pieces of food/drink going into his wind pipe instead of the food pipe only.  We are praying that this repeat test will yield the same if not improved results otherwise we will have some serious decisions to make about Hayden's eating future.

Shayla is doing well.  I want to explain how having a sibling with special needs affects other children...but as I have said before those words are still growing from within my heart...& I'm letting it take its time to grow.  Shayla is maturing & growing up...it is still hard for us to believe that she once fit in the bend of our arm...so small & petite.  Middle School is going well; Shayla has learned the ropes & is making much process.

Tim & I are looking forward to a much needed respite weekend thanks to grandparents...a couple of days to get away will be nice.
Happy Leap Year!!

2012 you haven't been nice...

2012 started with some medication changes for Hayden that were not favorable. He did not respond to it well & had some bad reactions...then the side effects from some of Hayden's medications kicked into over drive. Then we were in February...and Hayden railroaded by a severe case of pneumonia. This was his most severe case to date & won him an ambulance ride to UVA, 3 1/2 days in Peds ICU, followed by 3 more days on the pediatric floor.
We are working to figuring out the pieces to our son's complicated health puzzle.

Quick Christmas picture over view...hello January 2012!

I can't believe that December has come & gone so quickly.  Here's a quick peek into our world as December unfolded.  We are just barely into the new year--hello 2012, & wow there are so many things that I WANT to accomplish this new year.

But for now I want to say that I am very content with our lives, very happy with how the Christmas season unfolded & how as a family we were able to look beyond our needs/wants to help others.   

We were happy & blessed to spend a weekend with family...it's a cousin train.

Momma doing the cooking thing.

Momma & Dad's cute little Christmas tree that survived 3 busy grandboys!

Momma's Nativity...sad to say that all pieces didn't survive the entire weekend with 3 busy grandboys! 

Siblings

The entire clan...it's a tight squeeze & challenge

Christmas Eve candle light service

Shayla with Nanny & Pappa

Us minus Hayden who was fast asleep already at home

photo by Shayla

vision by candle light

Advent candles

the Santa hat photo...a tradition we started about 10 years ago

a sleeping elf, aka the only way to catch Hayden wearing a hat, LOL!!!

All is quiet & all are asleep, welcome to the world baby Jesus!!

Christmas morning

surprise to you Tim!!!

All still a little sleep, but still good with me & my babies

Happy Hayden!!

Christmas morning pj picture

helping hands for Hayden

for the grill master

something fun & whimsical 

Welcome to December

We are still here. It's been several busy weeks of December thus far.
I had promised a post about Shayla & that will come...the words are still growing from within my heart but I need to be sensitive to Shayla as well.
Hayden plain & simple just wears us out! Unless you are a fly on the wall there simply is NO way for us to explain just how busy he is, how you can barely even go to the bathroom alone, how sometimes we each have to just walk away from a stressful moment. But God grants us forgiveness & the ability to say 'I'm sorry'...thank goodness Hayden's disability doesn't give him the ability to hold grudges nor remember those moments (that we know of).
But December is also the month of Advent...the time leading up to the birth of Christ as a baby. I have enjoyed this Advent season this year...through several blogs I read, special church services, doing projects for others...not only is Advent about the birth of Christ (in my heart) but growing as a spiritual person as well through some of these routes.
My prayer for each that reads this blog is for you step out of your boundaries doing something for others this holiday season...turn the focus away from yourself & your family...we are trying to do the same.

This is sorta what I've been feeling lately....

When you are handed a deck of cards that is stacked, you play them...right?? Then you hope that the next hand is better, right??
Well, when your child is diagnosed with special needs...several needs stacked on top of each other, you learn to go with the flow, figure out how to make that 'deck of cards' work in your life & for the most part live life.
But lately I've been wrestling with the internal demons of what if's...

And how timely that another of the blog's I follow posted an entry just along the same lines.  I invite you to read Lisa Leonard's discussion on 'what if'.....
Here is my version....
...what if, Hayden could talk---that would be so magical to us
...what if, Hayden could feed himself &/or just sit at the table so we could have a 'Norman Rockwell' dinner---I seriously wouldn't know how to act
...what if, Hayden could just sit & be still---I can't even fathom that one, seriously if you could see how in 'motion' he is, you might understand
...what if, Hayden could walk & run like a normal 6 year old---instead he has a hard time walking, he usually trips over his own feet & if & when Hayden runs, it is like a awkward deer.
...what if Hayden could take care of his personal needs like the bathroom, dressing, a bath---maybe in another 10 yrs he can do this, but for now we take one day at a time & should have bought stock in the Huggies Pull-up line.
...what if, Hayden had no disability??  Then I stop & remember Gob blessed us with Hayden...we were chosen to be his parents. And what a blessing it is to be Hayden's parents.  There are days that I must be kicked in the behind & remember we are the ones we get the occasional deep throaty 'Hi'...we are the ones Hayden seeks his comfort in when he is tired/hurt/confused...we are the ones who get to look into his deep dark chocolate brown eyes & have our souls melt...we are the ones who get hugs despite everything...so, instead I chose to look at today & the rest of the days in the frame of mind of....'what is'.

What is the best....God gave us Hayden & we shall rejoice in all that he is & is to become.
Which leads to my next part....
another blog I follow (I have an entire folder that I randomly read...sorry, but it's the sad truth)...Tara Whitney talks about how it like to live 2 separate lives....life with their disabled daughter & then when they are able to have family vacations/respite while she stays home.
The posting linked to her name is so us...I had tears in my eyes, not a bad thing, but it helped me see our future.  We are several years behind their family in terms of coming to grasping life with & without our disabled child in every part of our lives...but the window that opened today helped me to understand, we'll all be ok.  And 'we all do the best with what we have'.
May your Advent season be filled with blessings...we are blessed with beautiful children & a life that although a bit crazy is our life & we are doing ok.

Shayla's turn is coming...because life as the sibling of a special needs child is challenging in itself.

Just a glimpse into taking care of our son...

Taking care of Hayden is a 24/7 job.  Tim & I  literally have to trade off sometimes because we literally get w-o-r-n out.
This is just a window into a short day...
Hayden gets up by 7am (or earlier).  He heads straight to the freezer to find his pancakes--this is pretty much the only thing that he likes to eat for breakfast. Hayden gets a pile of meds by 7:30...it is a shame that a six year little boy has to take so many medications....take a peak...

This is Hayden's medication pile...we fix up Hayden's meds on a weekly basis & that way we know when meds need to be refilled.  Our pharmacy usually gives me a big bag when I pick up all the refills.

In regards to medications...yes, Hayden takes a lot of meds; yes, he takes meds three times a day to prevent seizure & even at school; yes, we work to reduce the number/amount of medications Hayden takes with his neurologist...but sometimes that is a losing battle & Hayden doesn't respond to a plan wean off of a medication & then we know that Hayden's body needs to be on that particle amount of medication.  When Hayden has a doctors appointment, I typically go with a print off of all of medications & the times of day he takes the medication...it never fails, his medication list always gets messed up & if Hayden gets admitted to a hospital I have to go round & round to get the doses corrected.  But I am learning to take all of Hayden's medications with me when there is even a shadow of question of the possibility of a hospital admission.  Thankfully, those are far & few between.


We get Hayden ready for school & he is out the door heading to school by 7:30 a.m.  We are very grateful that Hayden has a full school day programming as well as transportation to & from school.
Hayden arrives home form school by 3:45 pm & he is a ball full of ENERGY!!!
It is truly an orchestrated event to keep Hayden safe & the furniture intact from 4-7:30 pm each night.  Hayden has his circuit that he makes from the sofa, the recliner, the floor to his bed through the kitchen & back again.  Hayden currently likes to stand on his head &/or doing somersaults across the floor.  I will admit....it is quite annoying & we do worry about A LOT about Hayden's safety, but just like a monkey the boy is quick!!

Hayden doesn't hold out to eat supper much beyond 6pm & please don't pull out any fine china nor Corelle if you invite us over.  Hayden likes to spin plates like tops or throw them to the floor.  Keep in mind it is a struggle many times to get Hayden to eat correctly.  It is actually, pretty gross to someone who doesn't know Hayden.  He is famous for stuffing his mouth & chewing little...he has choked several times.
We count down the minutes until 7pm when Hayden gets his bedtime medications.  Once he finally settles down for the night, someone needs to stay close to watch for the dang seizures while the other gets things together for the next day.
Watching from the outside, our life probably looks chaotic...but to us it an orchestrated event.

We were recently interviewed by our local newspaper about Project LifeSaver a devise that we are awaiting the arrival to help track Hayden if he gets away from us.