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.

Down Syndrome ~ Different does not mean less than ~

On our way to Pittsburgh this morning for Isaac's post op appointment, from his double ear drum repair surgery back in August, I realized that my twins are so very conditioned for our 2 + hour drive to Children's.  Over the past year we have averaged 2 to 3 appointments a month like this.  We drive 2+ hours most of the time to attend a 15 to 20 minute appointment and then turn around and drive back home.  These days are tiring for mom and dad, especially dad as he is the driver (mom can sneak naps with twins in car).  Yet I am thankful that we have a good Children's Hospital nearby that can take care of all of our boys needs right now.  I read blogs and stories of other families who must travel out of state or even out of the country for treatment.

Tom and I try to humble ourselves with our situation and remember that there are families out there dealing with way more than we are.  Having twins with disabilities does come with its challenges, but we are blessed with the resources, supports and ability to care for their needs. 

Last week we were in Pittsburgh for another appointment OR I should say appointments.  We were finally able to coordinate several appointments in one day.  We actually had six appointments (one each) with three different doctors in one day.  Our appointments started at 11:30 am and ran clear until 4:30 pm without a lunch break.  It was a long day but it was nice to know that we only had to remove twins from school one day instead of three separate days if we were to schedule as we usually do.

One of our visits was the boys bi-annual visit to the Down Syndrome Clinic.  These appointments always help make sure I'm not missing something and keeping up on all the required visits, follow ups and then add some suggestions to things we may be missing.  On this particular visit it was nice to speak to the Down Syndrome coordinator, Shelia, and confess that I feel like we just don't belong to the Down Syndrome group OR to the Autism group.  I see kids much younger than the twins with Down Syndrome flourishing and talking and doing great.  While I truly feel happy for these kids and their families I feel like it's hard not to compare the differences we see.  Then I have the boys in their awesome Autistic support classroom and an equally awesome after school program for children with Autism, and there, Caleb & Isaac are the only kids with Down Syndrome.  Again I find it difficult not to compare the differences in my boys with their peers in these classrooms.  Shelia at the Down Syndrome clinic said they do have parent who don't quite feel they fit in with the "traditional Down syndrome" category and for this they are trying to put together a quarterly parent meeting to help facilitate better understanding and to share ideas and outcomes.  I think this is wonderful and I plan on adding this to our frequent Pittsburgh trips.

I know that some may read this and understand where I'm coming from.  Some are going to read this and argue that all children are different and just figure it out.  And then there will be those who don't understand yet can sympathize with the unknown.  I love wearing these shirts on my twins because it reminds ME that "Different DOES NOT mean Less Than"

To end on a good note.  Today's appointment was a GOOD OUTCOME!! Isaac had just undergone his third surgery to repair two completely perforated ear drums from having several sets of tubes.  The second surgery was pretty invasive and a difficult surgery yet within three weeks he developed an infection that made them tear again.  In August he had a new surgeon and a new approach and today the doctor said they his ear drums are still in the healing process and covered with scab like wounds but both ears are closed and his no water in the ears restriction was lifted for the first time in like four years!!  We are so happy with this news and pray that he doesn't get any immediate ear infections while ears are still healing.  We will go for a hearing test in a few weeks and we should be able to remove the long distance ENT visits off the list for now.

Back At It - Quirky

Today is the second day of Down Syndrome Awareness month.  I shared an old blog post from 2006 listing 21 facts about Down Syndrome on my Facebook page yesterday and realized "I MISS blogging!!"  I was fascinated to read something I wrote six years ago that still rings so very true today yet felt there is so much more that I could add to it.  Blogging has taken a back seat to Facebook with the ease of just sharing a few words and a photo without much thought going into it.  Those posts get lost and are often not even seen by very many. For this reason I am going to start recording our family journey on this blog again.

Today is our school districts annual Homecoming football game.  Today the kids show their team spirit by wearing school colors of Red, White & Black.  I had the perfect shirt for the twins to wear, their Challenger baseball jersey:

Cute and comfy right? One quirk of the boys that drives this mama crazy is refusing to wear certain clothing.  I don't think its necessarily a texture issue, its more of a strong willed boy thing.  I shall look at it as good trait because they can and will communicate very strongly to make their wishes known.  I have donated several cute pieces of clothing because they flat out refused to wear it.  No sweaters, no sweatshirts, no sports clothing.  From experience now I know that I might as well bag it up and give it away at first refusal because it will not change the next time I pull it out of their dresser.  Deep Breath in.... it will be OK!

So I went back to their dresser and pulled out shirts I knew they loved and had to get some cute twin photos for today's blog.

Our daily view of twins!

Black shirt = Isaac,   Red shirt = Caleb

Tell me this photo does not make you smile

Of course the third photo just has to be blurry.  I never, ever, get Isaac smiling and there it is!!

So what's my Down Syndrome Awareness teaching for the day?  My boys are Quirky.  They are very strong willed and sometimes as their mama I need to focus on the positive of every behavior no matter how difficult that may be.  I have learned a long time ago with these boys that its not my wants but theirs that often win over.  Looking back on the issue at hand, its really no big deal that they would not wear a shirt I picked out for them, I'm just happy they go to school everyday with a choice of clothing to wear and for that we are blessed!

So tell me, are you typical kids Quirky?  Do you feel kids with Down Syndrome tend to be more Quirky than others?  Is this an Autism behavior? Did you smile at photo #3?

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!



Down Syndrome Awareness Day #8 - Twins, how to tell them apart

One question I have been asked time and time again is how do we tell the twins apart?  I often say that they look as different from each other as Camille and Elijah do to us.  This often gets nothing more than a giggle and a "Yeah Right!"

We have service providers who have worked with the twins for years and are able to tell them apart as easy as I can.  But if they move on to another case and don't see twins for awhile they go right back to square one.  

I must admit that photographs are harder for me to determine which boy is which sometimes.. Like photo #1 here:

Guess;

Through process of elimination I know that Isaac has a much rougher start with a double length NICU stay and more surgeries than Caleb so in this photo Caleb is on the left and Isaac is on the right. I say that because Isaac was a little smaller and this photo shows a chunky monkey on the left side.

Speaking of surgeries, my family was often caught pulling up boys shirts when they were little to look for the "Cheater Bar".  Isaac had developed NEC at two weeks old and had to have surgery to remove a section of his small intestine.  He then had a colostomy bag for several weeks before a reversal to fix it.  Thus the scar has become known as the cheater bar.  Isaas also had a broviac catheter placed in his neck in the NICU so he does have a few scars on his neck you can see if you really look.

Shape;

Another way to tell them apart is something that I found out after I had identical twins myself.  I had never really known identical twins well enough to put this theory to test, but I can say its true in my boys for sure.  The trick to tell identical twins apart is that one twin will have a rounder face (Isaac) and one twin will have a more oval face (Caleb).  Can you guess the photos above who is who?

Personality;

These boys are so very the same in so many ways and yet so very different in other ways.  Medically, they are very much the same.  One gets a cold the other is a day behind.  One needs a surgery to repair something soon enough the other twin develops the same issue and needs surgery.  Caleb is my comedian as you can see in photo #1 & #2 below... BUT WAIT.. as I was looking through these photos I see Isaac in photo #3, #4 & #5 below and see he is a comedian too.. ok, well...um, I'm stuck.

Actually Caleb is a little more advanced in his sign language and communication skills than Isaac.  Isaac is a little more aggressive towards peers and therefore stays to himself a little more around children.  On the other hand, Isaac loves adults and is known as our hugger.  He loves going around each Sunday at church and handing out handshakes or hugs.  

Rainbow Eyes;

Isaac has the most gorgeous eyes.  When he smiles they turn into Rainbows, see photo #2 below.  I love the joy you can see in his eyes when he is genuinely smiling about something.  I don't get as many photos of Isaac smiling as I do with Caleb so I treasure each and everyone of them.  These photos were taken spring of this year.

If you know my boys personally and can add how you tell them apart, please share.  I love hearing how others figure it out.  Also, thank you for someone asking how do we tell them apart.. If anyone else has a question I can answer I am always looking for blog post ideas.  Comment below!

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.

Down Syndrome Awarness Day #3

Thank you Red Room Images for a WONDERFUL ball photo this year, I love it!!!!!

This is the second year the twins played on our local Challenger League.  They did better this year than last and expect that each year they will enjoy it more and more.  This year they wore their noise reduction head phones and it really changed their experience.  Usually they do not like to be in crowds let alone crowds that clap and hoot and holler, with these headphones on they tolerated the noise on the field and in the stands much...much better.

Having Down Syndrome might hold them back from doing things "on time like a typical child" but it doesn't hold them back from eventually getting there and enjoying it just as much as the other kids.  I am proud of Caleb and Isaac for hitting the ball off the tee all by themselves this year... YAY BOYS

Down Syndrome Awareness Day #2

I think for Down Syndrome Awareness Month instead of blogging and typing in facts like I have done for the past eight years, I'm going to share what really matters..

My twins cuteness...

So look for a daily photo of these crazy kids who have changed us more than I can even begin to type with words.

Being a parent... to kids with Down Syndrome

Tomorrow, March 21st, is World Down Syndrome Day.  The reason behind this particular date is that individuals with Down Syndrome have 3 - 21'st chromosomes.  Thus 3/21 has be designated World Down Syndrome day in their honor and to spread awareness of this disability.  Over the past eight years I have learned a whole lot about Down Syndrome (DS), not only by living with it in my identical twin boys both with DS but from online research, meeting other families and reading several books on the topic.  I would consider myself very knowledgeable but certainly still in the learning stages.

I remember when my husband and I were informed that baby B, Caleb, was confirmed to have Down Syndrome.  I was more afraid of not knowing what to do with him than I was about having a child with something wrong with him.  Long story short, twins came 9 weeks prematurely, one at 3# 3 oz and other at 2# 10oz.  We had no idea that they had DS.  Baby A (Isaac) was reason for emergency c-section as he was literally born with head trauma from being stuck in my ribs.  Due to this head trauma they were not able to identify DS in him but saw features right away in Caleb and took some blood to confirm.  I was told that having twins both with DS was very unlikely and certainly very uncommon so they would wait until Isaac (2#10oz) was bigger to draw blood to test for DS.  Two weeks later Isaac developed NEC and was taken to Children's Hospital in Pittsburgh to have surgery on his small intestine, at which time they removed enough blood to confirm that he did indeed also have DS.  In our opinion, as mom and dad, we were grateful that both boys had it versus one with and one without.

Down Syndrome is most certainly scary to brand new parents. Down Syndrome is most certainly scary to experienced parents who have children growing up into adults.  Down Syndrome is most certainly scary to think to far ahead in the future about.  Down Syndrome shapes and molds a families lifestyle differently than those without a family member with Down Syndrome.  Down Syndrome is filled with uncertainties, no doubt.

BUT.... I am going to removed the words Down Syndrome from the above statements and fill it in with the word Parenting:

Parenting is most certainly scary to brand new parents.  Parenting is most certainly scary to experienced parents who have children growing up into adults.  Parenting is most certainly scary when you think to far ahead into the future.  Parenting shapes and molds families lifestyles differently than those who have no children. Parenting is filled with  uncertainties, no doubt.

Looking back on the past eight years am I going to say that raising children with Down Syndrome is as easy as raising children without... NO WAY (I have three typical children)!!! Would I say that raising children with Down Syndrome feels fair all the time... NO WAY.  Honestly, I selfishly get sad and down sometimes when I see other families who can just pick up and go to the drive in movie theater or have fun together at an amusement park, or even just go for a walk in the woods together.  Things like going to a ball game or swimming pool are just easy fun things to do.  But my circumstances are different than those raising children with just Down Syndrome.  My twins are non-verbal and also have Autism.  Autism is a whole different story that I won't go into on this post.

What can I say that I have learned the most about raising children with Down Syndrome?  I have learned that I was (and still am in many ways) very selfish.  I did what I wanted when I wanted with my other children and I cannot do that with my twins.  I have learned that unconditional love trumps selfishness.  I have learned that people with Down Syndrome just want the same thing that you and I want.... someone to LOVE them and NOT GIVE UP on them.  I have learned that the saying "Children with Special Needs does not take a special family to raise them, it MAKES a special family" is so very true in more ways than I can mention.  I have learned that people with Down Syndrome are beautiful people who just want others to take a minute to see them for who they are and accept that they are a little different but amazing in their own way. I have learned that I will never stop learning what I means to put others needs in front of your own.  The Lord works in mysterious and wonderful ways when it comes to something one might consider a trial in life, only to come to realize that it is in fact a blessing!!

My three older children have learned a valuable lesson that I can honestly say I did not know as a youngster. My boys have opened all of our eyes to sympathy, empathy and compassion.  These boys have changed my world and might I say for the better.  I pray that what I've explained here today does not make it seem as though raising my children is a burden but in reality a true blessing.   Some days are easy, some days are hard... but WAIT, isn't that the same thing I could say about my three older children without Down Syndrome?  You betcha.

When people say to me "I don't know how do you do what you do?", I can simply just say in love and truth, because they are my beautiful children and you would certainly do the same if they were yours.  Down Syndrome is not something that scares me, people who don't take the time to understand and enjoy people with Down Syndrome does.  Through all its ups and downs, parenting a child with Down Syndrome is a gift and I find it a privilege to be Caleb and Isaac's mom.

Happy World Down Syndrome Day 2014!