Sisterly Love

Let me start by saying this girl has ALWAYS been mother hen to her twin brothers.  When I brought home Caleb at 6 weeks old and he was just over four pounds, my Camille (who was four years old), just scooped him up like a baby doll and never looked back.  She was comfortable and GOOD with handling a tiny baby and she is still just as wonderful with them both today.  She changes diapers, she gets them their sippy cups and food items they request.  She signs and dances with them.  She tickles and teases them.  She is a great big sister.

This year Camille chose to stay home and cyber school her 8th grade year.  She really is having a great year so far and seems to be enjoying all her subjects...ok all except History but what 8th grader likes History?  For her English composition class she is working on a Memoir.  It has been being discussed for a couple of weeks now but just this week its time to put the pencil to paper and begin writing.  I was not at all amazed that Camille chose the title "Growing up with Special Needs".  I am certain that her teacher thinks she may have some kind of special needs from the title.  But I know I can't wait to read what she writes.  I do know that however she writes it there will be wonderful advocacy for her brothers and all others with special needs.  Camille has compassion and understanding well beyond her years and she blesses us all with her love.

The first photo above was when Camille was five years old with Isaac.  The second photo is just this morning before I woke Isaac for school.  Still in his sister arms fast asleep and loved.  How can this not put a smile on your face?  

Having a sibling with Down Syndrome is hard at times.  I cannot speak this from experience as a sibling but as a parent I see my "typical children" finding it difficult to have mom and dads attention less often than they wish to.  I know my three older children feel as though they are missing out on things their friends do because we just can't go there or do that with the twins.  I know my three older kiddos feel like we don't do enough as a family but that is something we just can't fix right now.  Unfortunately, as the twins are getting old things are starting to get easier to do BUT the older kids are getting older and their time with us is becoming limited.  Our oldest daughter, Tristin, is 18 years old now, a senior in high school and looking forward to life after school.  I feel like I waited and waited for the right time to be able to do things with her and now I may never get the right time.  I pray that the time we have had will be seen as precious as she grows older.

Even in difficult times, even with all the many challenges we face having these beautiful twin boys in our lives there is no bitterness or hurt feelings, there is just LOVE.  What an amazing big sister Camille is and I thank the good Lord above for giving us her.  Even in these teenage years and dealing with teenager girl stuff, Camille still allows her heart to been seen by all.

That's My GIRL!!!!!

Daddy took Camille and Elijah out for their first hunting experience this morning.  They saw a few squirrels but nothing worth trying for.  Elijah was his usual jabber jaw and Camille was wishing she could give it a go again in the afternoon with just her and dad.

I was making fun of her before she left because she was putting on makeup. I told her that squirrels didn't care what she looked like and she said "Oh but they do!". 

So dinner time came, darkness arrived and Camille and Tom rolled in.  I joked with Camille and asked if it was indeed difficult to put dinner on the table from hunting.  She beamed a BIG OLE SMILE and told me she rocked her makeup because she got one!!  Seriously I thought she was joking and I laughed at her...

SHE DID ROCK THAT MAKEUP!!!!!!!! 

Its a nice sized squirrel.

 

 

First Day of Hunting for kiddos

Camille and Elijah took their PA Hunters Safety Course a few weeks ago.  Since I have never taken it myself I also sat in on the class and got certified to hunt.  I have decided to allow the youngins to go first and let daddy teach them the ways of the hunter.  This morning they got up bright and early, for a Saturday, and got ready to hit the woods.  They actually were ready and waiting on Tom....and waiting...and waiting...LOL

 

Tom gave them the whole gun lesson and talk and they finally went off on their way.  Today they are hunting for squirrels and looking for wild mushrooms. 

 

GOOD LUCK KIDS!!!!

 

 

 

 

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!



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!!

Freiberg's Infraction

Yet another word that I learned today that I would not have cared if I had never learned it...ever!

Camille has had some pretty bad toe pain since at least December.  We saw our pediatrician about it once and talked to physical therapist about it while in treatment.  Both said that there is nothing to do for a broken or stubbed toe and to just wait it out and the pain should go away...  Well, several months later, the pain is still there and often worse than the week before.

I made another appointment to see our pediatrician last week and saw the Physicians Assistant there that we love.  She said that this has lasted long enough that it suggested an x-ray.  X-ray was taken Thursday and Friday morning they called and said they had already set up and appointment with a specialist.  When I asked if it was broken she said "Well, no, but there is something there that definitely needs attention from a podiatrist.  We got you an appointment for Monday morning"  YIKES!  That was quick is it serious?  And then she sprung the new word on me that I researched this weekend.  

Freiberg's Infraction.

We went and saw Dr. Hewitt this morning and he stated that this is a common issue found in dancers, which Camille is not.  Its also more found in females between the ages of 12 and 14, but its apparently rare enough that people often don't find it until its to late.  As a matter of fact, the x-ray was read as "normal" at the hospital, it was only when the specialist peeked at it they found the Freiberg disease. Camille's issue was advanced enough that she needed treatment, or if left untreated, she would need surgery in 2 - 3 years..  SOOOOOOO

Camille is starting the summer out like no 12 year old pre-teen wants to.  With a "medical boot" that she has to wear for at least the next six weeks... No activity, no pressure on the foot, no skating, no jumping on trampoline, no SWIMMING??!!!!! (can only sit on pool edge or in water but no bouncing or swimming)  Bummer Camille... but it beats the alternative of surgery in a few years.  Chin up girly, at least we can decorate it with colorful stickers or something ;)

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