Down Syndrome Awareness Day #10 - Why God?

I have been trying to go through and clean up photos from the past in hopes of never losing them.  Today I found a disk labeled 2008 Recovery.  This means that they already have been in jeopardy of being lost at one time.  What a better way to keep my favorites than to save them to my blog.  I seriously looked at these photos and felt as though this was my life just last month.  I look at these photos and realize how far we have all come.  I look at these photos and fear that I am not so slowly losing all my babies to a thing we all call life.  On days that I feel like throwing my hands in the air and questioning God as to how he can give me so much to handle, I really, really, need to sit and look through photos like I have done this morning.

There are days where I selfishly do ask "Why has God given ME so much to handle?"  Instead I know that I need to ask how I could have allowed so much time pass by without realizing, accepting and inviting in all the blessings and hardships that God has intended just for ME?  There are hard days, there are hard decisions, there are frustrations like I have never felt before.  Some days with the twins being non-verbal, having Down Syndrome, ADHD and Autism truly just does not feel fair to me.  Seeing other children their age (and younger) playing with one another, communicating, laughing, freely running around with the understanding of safety and not taking off into dangerous situations, and just all around being "normal kids" IS hard for me.  When thoughts like this run through my head I'm often stricken with instant regret for my feelings.  Its so easy to slide into the "oh woe is me" days.   And then..... I sit down for no apparent reason to look through photos and get the reality smack in the head.  We have five beautiful children, some are not so lucky.  We have hard times, but so does everyone else on the plant.  I know that God has chosen Tom and I to parent these five children and to do it with the understanding that He is our guide.  As the kids grow older and their likes and dislikes begin to navigate in different directions we can be assured that God has set this path for us and it is our responsibility to travel it with comfort knowing He is with us. 

My husband Tom has always been my rock when I begin to doubt.  There are times that we are at Children's Hospital about to let our children go into surgery for one thing or another and I am nervous and scared.  Then Tom will stop me with tears welled up in his eyes and say to me, we are so lucky to have these boys, we are so lucky that they are just getting this or that done.  Think of how many parents in this very same building are getting the bad news that their child was just diagnosed with this or that and may or may not be coming home.  That puts our day and situation into perspective.

Having a child with Down Syndrome is not a downer, its not a burden, its not a debt we have to pay for some previous sin, its not some sort of punishment or some freak of nature.  I read silly stuff like this all over the internet, its just nonsense.  Having a child with Down Syndrome is in so many ways just like having children without Down Syndrome.  We have three typical children who get in trouble for not obeying, who get hugs and kisses for doing something wonderful, who we love no matter what decisions they make but often remind them,  just in case, to make the good decisions.  I recently read an analogy on Facebook relating a four leaf clover and children with Down Syndrome.  They are both uniquely rare and to be cherished as such.  Having a child with Down Syndrome gives us that don't have Down Syndrome the opportunity to see how easy we have it, how instinctively we just understand things and how they work, how selfish we are and how much we really need to dig deeper for patience and understanding for that which we do not know.

As I sat down to share these photos I never thought I would type what I did, but I'm glad I did and I hope that sharing this will comfort those who have a newly diagnosed child with Down Syndrome or perhaps open the eyes of someone who looks at children like mine with sympathy or disgust.  People with Down Syndrome are people first with all the same wants and needs as us.  Love and Respect being the first things they need and deserve. 

I appreciate each and everyone of you who already does love and respect my boys for who they are and try to do what you can to communicate that to them.  Take a roll down memory lane with me to the year 2008.

Enjoy!



3 Surgeries in one month!! What was I thinking??!!

I guess I didn't realize how much I may have bitten off by scheduling three surgeries in one month.  Lots of pre-op testing and appointments have been keeping me busy.  Then I wasn't really considering recovery time AND the fact that we have a little three day family get away planned in the middle of it all that we've had planned since the beginning of summer.

Yesterday Caleb went and had a thyroid sonogram evaluation done just to make sure that the mass we found on his neck has nothing to do with his thyroid.  He was the model patient and he sat completly still and watched the images intently like he was watching his favorite cartoon.  Today already his ENT at Children's called and said that his thyroid looks great and they will go forward expecting that this is a Thyroglossal Duct Cyst as originally thought.  He said that he won't know for a fact that it is that until they get in there and see.  Best case its just a little mass thats not thyroglossal duct related and they snip it and remove it.  If it is a Thyroglossal Duct Cyst they will have to travel up to the bottom part of the tongue to remove cyst which will be a little more involved but not much.

Today Tristin went in for her pre-op appointment.  She will be having her tonsils out next Monday.  All other four children already have their tonsils and adenoids out and not sure how Tristin got missed but her throat has been a mess for months and the tonsil stones are record size....yuck!!!  We enrolled her in a case study to take and extra step in pain management.  She will apply a topical medicine to her entire neck four times a day for a week to help with pain.  Anxious to see how it works for her.  I have heard time and time again that the older you are the harder it is to get your tonsils out.  With Tristin being 17 she's considered an adult and has been warned that there will be some extreme pain for several days.  I still have my tonsils so I am no good at giving advice on what to expect.

Caleb and Isaac are both having surgery on October 31st.  This was the surgery that was postponed from September 19th due to conflicting schedules with surgeons.  Caleb will have five procedure done.  He will have dental work with extractions, ear tubes placed, an airway assessment done due to his surgery on June 16th that had to be cancelled due to unstable airways, the mass removed from his neck and a hernia repair performed.  Isaac will have three procedures done, the dental work with extractions, he has two perforated ear drums that they are going to see if they need repaired or left alone and a scope to assess his airway as well since they usually have identical issues all the time.

Both boys have Subglottic Stenosis (narrow airways).  We have known this since they were infants that they both have this condition.  This is something that should not get worse but basically just stay the same as they grow.  It is my understanding that the stenosis will grow with them but always be smaller than normal size.  When Caleb could not be intubated in June they came out and said he has a 60% narrowing, more than was on record from the last surgery.  They are assuming he has some scar tissue forming or growing from previous intubations, this is why they are going to do an airway assessment.  Since they are both at risk for intubation they decided to get as many procedures done as possible with this next surgery date.

Asking for prayers that all surgeries go well.  This will be Tristins second surgery (her first surgery was when she was two) and the twins, umteenth...really lost count....surgery.

It's official, we have TWO TEENS!!!!

Tristin Rose, today you turn 17.  As your mom I am seeing a beautiful transformation happening from my little girl to my beautiful young lady.  You are seeking your independance way to fast for me, yet I know you must spread your wings and learn to fly.  I love seeing the artistic passion you display when you do a drawing or pastel.  I love seeing you step up and do adult tasks like calling to make your own doctors appointment, deciding where to order dinner and then making order, working at Hanzely's Nursery and Garden Center and interacting with customers.  Your beautiful inside and out.  I am saddened that this is your last year as my "child" and I know your looking forward to turning 18 to "get out of here", but you will ALWAYS be my baby girl, my little pookey bear.  I love you more than words can say......as I tear up again (boy you make me do this alot lately).  Praying God blesses you with a fantastic year.

Camille Sage, today you turn 13... THIRTEEN...what??!!! another teeneager in the household, how will I survive it?  You have changed both in appearance and in maturity this past year.  What a difference a year makes at this age.  Your compassionate heart continues to grow with you and your amazing gift of being a caregiver to your younger brothers amazes me.  I can still envision you being four years old and lifting up your 4# little brother Caleb freshly home from the NICU and saying "I will take care of him mama".  You have never let me down with that.  I see confidence building in you that wasn't there before, I see a comedian side of you coming out that cracks me up, I see you will always give me a twist and turn where I thought I knew the road ahead already, I see myself being proud of you down whatever road you take.  Love you Girl!!

Each year on this day I still mourn for the families who lost everything in the 9-11 attacks, but I also praise God for blessing our family TWICE on this particular date.  We will always have reason to celebrate but still honor this day as one that will never be forgotten.  

Psalm 127:3-5New King James Version (NKJV)

3 

Behold, children are a heritage from the Lord,

The fruit of the womb is a reward.

4 

Like arrows in the hand of a warrior,

So are the children of one’s youth.

5 

Happy is the man who has his quiver full of them;

They shall not be ashamed,

But shall speak with their enemies in the gate.

Back to School - Bawled like a baby... I DID!!!

I have to admit I have yet to EVER cry on the first day of school.. Usually I am certainly sad to see summer break end but relieved to finally be able to tackle the housework and try to get ahead of laundry with kids off at school.  I have been taking photos of my kids with signs stating the grade they were entering way before Facebook.. Tristin is a junior and I have her kindergarten photo :)

WAIT... WAIT... Tristin is a Junior.. That is what teared me up and made me cry uncontrollably this morning.  As I'm watching my kiddos make their traditional first day of school poster I reflect on taking Tristin's photo as an excited Kindergartener about to be homeschooled. Now today I watch a gorgeous young lady still scribbling on paper at mommy's request so I can always remember what grade she is going into and what year it was.  (I am already predicting my forgetful mind wondering what year photo was taken and what grade she would have been in)

Then I looked at my Camille who has definitely blossomed this summer and has taken the lead in being the tallest sibling.  She passed up Tristin by a whole inch already!  She only has a few days until she turn into a mouthy know it all teenager, and I think she's had enough practice this summer to already master it on her birthday!!

Elijah is in the MIDDLE SCHOOL!!  Whhaaatttt???? My middle child is in the middle school?  He is actually pretty excited and laid back about it.  The girls both seemed nervous and concerned about meeting new people and making all new friends, Elijah has no worries and he is ready. Last night as girls were picking out their first day of school outfits here is how our conversation went:
Elijah: "Why do girls have to do that mom?"
Me: "To be prepared for their first day"
Elijah: "I'm just going to throw on the first thing I can grab in the morning"
.. That's my Boy!

And finally, the twins are entering 2nd grade.  They participate in the Autistic Support classroom in our public school.  Having children in a special education classroom can be and just plain ole IS stressful.  I am hoping for a better year for them and plan on taking a more active role in their education.  They deserve the best and I pray that God leads me to help them get that.  When I told them that they were gong back to school today and riding the bus to go see their friends they both signed "NO!".  I always say they are the mouthiest non-verbal kids I know...LOL

Now off to canning my garden goodies.  Today's agenda.... Salsa!!!  Have a Great Day Kids!!

Tristin Funny to remember...

Conversation to remember.  Today in checkout line at grocery store:


Tristin: Mom I am kinda jealous of you
Mom: (surprised) what would you be jealous of honey?
Tristin: That I will never have kids as cool as you do.

Took me a minute but then I busted out laughing, whata girl!!

Mission Five Kids off to school..... ACCOMPLISHED!!

*WHEW*  Seriously worked up a sweat this morning getting them all off.  And...And... Not ONE tear shed...LOL it was to darn busy..

Posting pics real quick so I can go out for coffee with my dear friend Kristen.  A celebration cup of joe :)

sweet sweet Tristin a freshman already

My Camille, she's a gem!!!

cool backpack from his baseball team

Annual HUG your sibling photo was no easier than the last...LOL

2012 Hanzely Family Reunion

Great Grandma Hanzely with all her great grandchildren, what a beautiful photo!!!

It seems like it has been such a long time since our last reunion.  We try to  hold them every other year but we have had a few weddings over the past few years that we went three years since our last reunion.  Since Great Grandpa Hanzely passed away we began holding the reunions down at our family pond instead of at the Great Grandparents house to make things easier on Great Grandma Rita.  Our last reunion the Hanzely boys attempted making a water slide down the hill into the pond.  It was, of course, a big hit so this reunion they worked hard to top the last water slide and make this one even better... OH BOY did they!!!!

There was a water pump that took water out of the pond, through a hose at the top of the slide.  The slide was made up of first a layer of cardboard, then plastic from Uncle JR's greenhouse, and rubber tires along the edges to keep from going off the plastic.  I would guess the slide to be about 40+ yards long, down a nice steep hill into our very fun very large pond.  The slide was for sure the big attraction of the reunion this year.  Everyone showed up in their suits ready to take on the hill.  So much fun, so many photos, I just had to make a montage of all the fun to share:

Backyard Fun

We just finished setting up our tent at 10 pm for a last minute decision to let kids sleep outside in the backyard.  They LOVE this!!  I can probably bet money that they will all be in the house come morning.  Cousin Kylie is experiencing her first backyard sleepover tonight.. Hope the kids are nice to their little cousin and don't tell scary stories to much :)

Oh to be a kid again.......

Crazy Sibling Time

I am always posting about the boys.  The main objective of my blog is to educate and spread awareness on Down Syndrome.  Siblings are a BIG part of that awareness.  Having brothers who demand so much of mom's attention does get on their last nerve sometimes, but when the day is done they are the first to run and give hugs and kisses at bed time and help the twins say their prayers.

Today, after spending some time taking photos of the twins playing outside today I wanted to be sure to catch the siblings while I had the camera out.  Sometimes getting all three older kids together can be a challenge.  Ones outside playing, one is at band practice, another is doing something somewhere... so tonight we found that time and it was fun!!

Ok had to record they were sitting this close and not fighting...LOL

My Charming Camille 

Terrific Tristin

Mr. Elijah is looking so grown up

Ok let the goofy photos begin

Fun Times at the Hanzely Clan Household tonight.