Wednesday, February 1, 2012

Her new do

We went to the orthopedic surgeon today and they did another x-ray of Lily's hips. They look good, but the doctor really wants to keep the cast on for the whole 8 weeks. He says it takes 6 weeks for the ligament to heal form being stretched and inflamed from the dislocation.  He doesn't want to rush the cast removal because we want to avoid the big surgery (opening her up to cut the bone, put a metal plate in and screws in to fix her hip) if at all possible.  


Once we got home, I couldn't stand looking at her hair anymore.  We tried for a 1/2 hr to get the knots out, but it was just too big of a mess.  Lily can't have a real bath until she gets the cast off so washing her hair is very difficult.  So, I decided to cut it.  I cut off about 6 inches of her front to a bob and then cut off the majority of her hair in the back leaving about an 1" or 2".  It looks pretty cute in the front, but the back looks like I gave Leo some scissors and told him to have at it.


She still has her winning smile though..




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It had to be done.


I tried brushing out Lily's giant dreadlock, but it was just too difficult.  She hates having her hair combed/brushed when there is barely a knot and these knots were all the way to her scalp in the back. So, I had to make the heartbreaking decision to cut her beautiful hair. I know her hair will grow back and I may seem silly, but it didn't make it any easier for me to do it.  I'm still working on finishing it (she needed a break), but at least she doesn't have that awful birds nest of hair to lie on anymore.

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Sunday, January 29, 2012

My Miracle Lily

I recently reposted 2 videos I'd made for Izzy and Dasha celebrating their adoptions. As my little boo is lying in her bed healing, I thought I should make a video celebrating her inner and outer beauty.  When I heard Martina McBride's song "In My Daughter's Eyes" for the first time years ago, I was blown away by the lyrics.  It's as if they wrote the song about Lily and me.  She's my miracle and I'm ever thankful God gave her to me.


Lyrics:
In my daughter's eyes,
I am a hero,
I am strong and wise,
And I know no fear,
But the truth is plain to see,
She was sent to rescue me,
I see who I want to be,
In my daughter's eyes

In my daughter's eyes,
Everyone is equal,
Darkness turns to light,
And the world is at peace,
This miracle God gave to me,
Gives me strength when I am weak,
I find reason to believe,
In my daughter's eyes

And when she wraps her hand around my finger,
How it puts a smile in my heart,
Everything becomes a little clearer,
I realize what life is all about,
It's hanging on when your heart is had enough,
It's giving more when you feel like giving up,
I've seen the light,
It's in my daughter's eyes

In my daughter's eyes,
I can see the future,
A reflection of who I am and what will be,
And though she'll grow and someday leave,
Maybe raise a family,
When i'm gone I hope you see,
How happy she made me,
For I'll be there,
In my daughter's eyes

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Saturday, January 28, 2012

These two crack me up!









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Friday, January 27, 2012

24 and counting

You can click on the picture to make it bigger.

My mom really wanted to torture us get a new picture of all 24 grandchildren together, especially since 3 babies were born since last April. This was taken at my parent's house Christmas day.  My brother and his wife are expecting their first baby (a girl!) in March so it's going to be an outdated really soon. The tally so far are 10 boys and 14 girls ranging from 17 years to 4 months.
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Wednesday, January 25, 2012

Valium and a dreadlock (Lily update)

Day 8 of 56
Tick tock tick tock tick tock.

We took Lily to the Orthopedic Surgeon on Monday because we felt she needed to have her cast checked.  She's been doing a bang up job ripping out the Gore-tex liner near her belly most likely hoping she can get the darn thing off.  They x-rayed her and said everything looked good.  They also taped her up a bit better, but he thinks this will be a weekly repair because she can so easily reach the inner part of the cast around her torso.  We told him how Lily seems to be having an episode every day where she seems to be in a full blown panic attack.  She starts to get all twitchy, thrash, cry, wail rocking back and forth with a crazed look in her eye.  It is really reminiscent of when she wakes up from general anesthesia and is inconsolable.  There is no reasoning or singing to calm her.  It's usually lasts about a half hour per day before she calms down. It's heartbreaking.  Last night it happened at 2AM and lasted well over an hour.  Once she calmed down, she stayed awake until about 7:30AM.  We woke her up at 1PM because we don't want her biological clock getting screwed up from all of this.  I called the doctor and told them what happened.  I then begged for something to help her. They prescribed Valium.  We will now be giving her a crushed valium in her nightly meal to help her sleep thru the night and ward off whatever is causing her to flip whether it's anxiety, muscle spasms or both.  We are praying this will get us thru until they allow the cast to come off.  

Lily mainly speaks in one word utterances and learned phrases like "all done" "go outside".  Lily is unable to tell me what hurts or how she feels.  She can't tell me what to do to make it all better.  It's always a guessing game and luckily I guess right most of the time.  Right now though, she has regressed in her ability to communicate with me out of her frustration, anxiety and confusion.  Her sensory processing issues are at an all time high.  She's gritting her teeth constantly, twitching her body and using up any calming tool in her sensory arsenal to cope.  An example would be taking a washcloth (she calls them "looks") and flipping it continuously, looking at it at every angle and chewing on it to keep in some sort of control. It kills me that I can't easily explain what's happened to her and why the heavy claustrophobic cast is pinning her down.  I can't put a calendar up and mark the days off because again she doesn't understand time.  All I can do is sing her favorites songs, provide the iPad 24 hours a day if need be and play every freaking Barney DVD we own hoping she stays fairly content until this nightmare is over.  To top it all off, Lily has a giant dreadlock on the back of her head.  It is quite the ordeal to wash and brush, let alone cut, Lily's hair. She likes her rituals and routines and when it comes to her hair, there's no veering from that routine. Hopefully, I will be able to fix her beautiful hair once the cast is off, but things aren't looking good right now. :sniff:

I'm grateful for any prayers said for Lily right now.  Her world has been turned upside down. 


***a mini update:  After taking Valium, Lily had a restful night sleep!  No signs of a panic attack or muscle spasms!  Thank you God!!

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Tuesday, January 24, 2012

Early signs of autism

I'm been asked over and over what signs Reagan, Kaelan & Leo showed as toddlers that led to their diagnosis of autism.  Since Early Intervention has been proven to be one of the biggest advantages for children with autism, I wanted to share early signs we experienced with our boys to possibly help facilitate others to seek help sooner than later.  For us, it wasn't until all 3 were a year or older when the signs became apparent. Their first year, aside from the premature birth of Reagan & Kaelan was pretty typical. They smiled, made eye contact and met cognitive and physical milestones for the most part on time. 

When Reagan & Kaelan were around 16 months old, I thought something was going on because they were so different from Riley at that age. I attributed the differences due to them being born 5 weeks early. I also thought maybe we'd neglected to entertain them as much as we had Riley with silly songs, patty cakes, peek-a-boos, reading books and other baby/toddler games because we were overwhelmed when they were born premature 5 days after Riley turned 2.  So we overloaded them with engaging activities hoping to make up for lost time. But by the time they reached their 2nd birthday, Matt & I were still seeing too many unusual behaviors and still very little speech. Back in the dark ages before Google, I was actually able to find a check list online of "Symptoms of Autism". Shockingly, Kaelan had almost every single symptom. Reagan, on the other hand, had some symptoms, but not all. Overall, Reagan seemed stagnant in his social and verbal development. This led me to make a list for our pediatrician of each twin before their 2 year check up documenting their personalities, developmental milestones and quirks.  I wanted to see what our pediatrician's thoughts were.  I was pretty surprised when he acted like we were crazy, but we realized later he had a really old view on what autism was. Thank God I pushed him to order an Early Intervention evaluation by our state instead of waiting it out.

Two years ago, close to his 1st birthday, Leo also started showing early signs of autism. Because I knew what I was looking for, I saw some signs almost an entire year before Reagan & Kaelan. The benefit of recognizing the signs earlier meant Leo received First Steps (Early Intervention) a year sooner than his brothers.

Before listing the signs, I'm going to do a disclaimer.  I'm not a doctor or a psychologist.  I'm just a mom writing about what I saw with my 3 boys before they were 2 years old. All three are very different in how autism has affected them, but most of the early signs I'm listing, we saw in all of them. I'm leaving Lily out of this post because her first few years were so involved with health issues that I don't feel it's fair to include how we came to the decision (actually just recently) that she has a dual diagnosis of Down syndrome & autism.  That will be a whole other post someday.

Early signs of autism in my boys:

1. When they were babies, all three had great eye contact and then they went out of their way to avoid eye contact (i.e.: turning their head looking anywhere, BUT at our eyes). Because I was really watching for this, Leo went from amazing eye contact to non-exsistent right around his 1st birthday.  I noticed this trait more with Kaelan than Reagan when they were around 15 months old.  Once we started pushing for better eye contact they almost acted bashful about giving it.  Leo would squint like he was looking into the sun when he'd give us even fleeting eye contact. 

2. They would respond to their name (turning to look when called and usually smiling) by the time they were 6 months old or so.  Leo started acting deaf around a year and rarely responded to his name anymore after that.  Somewhere around 18 months I remember worrying about the twin's hearing because they too never seem to respond to their name anymore.  We had Reagan's tympanic's checked after an ear infection and he failed them so our ENT placed tubes in the ears to help with fluid buildup.  Kaelan's tympanic's were normal at the time, but after several ear infections and then failing a hearing test ordered by First Steps, he had tubes placed a couple of months after he turned two.  Even with tubes though, they still acted like they were deaf most of the time.

3.  Little or no speech.  Kaelan said DaDa, GaGa, BaBa when he was around 10-11 months old and then lost all speech.  Reagan said DaDa and made lots of sounds/gibberish, but no real words that we understood.  Leo makes the M sound and the E sound right now, but has no real speech yet and is considered nonverbal.  It is important to note that children, who have Asperger's, don't usually have speech delays.

4.  Loved to spin things or themselves.  Kaelan could spin a hot wheel car like you wouldn't believe.  He also turned little bikes upside down to spin the tires.  They all three loved to watch things spin.  Reagan & Leo liked spinning themselves around and around and never got dizzy.

5.  Clapped really late (loved to watch patty-cake, but would not do without hand over hand help)

6.  Took a long time to learn names of body parts.  Leo still doesn't know these at almost 3 years old.

7.  Took a long time to wave bye-bye.  Leo still doesn't do this.

8.  No pointing. Instead, they would use their eyes to point by looking intently what they wanted.  Hard part was guessing what they wanted because if I was wrong they would scream bloody murder or cry hysterically.

9.  They all made sing song sounds and lots of screaming whether excited or upset. 

10. Completely ignored or were indifferent to other children & adults.  Parallel play to the extreme.

11.  Covered their ears a lot because lots of sounds bothered them.

12.  Very picky eaters, usually had favorite foods and avoided all others especially squishy textures.

13.  They loved to carry multiple toys or objects in their hands and God forbid they should drop something or you try to take something away.  I swear this is a precursor to OCD behavior or future obsessions ;)

14.  Didn't play with toys appropriately.  No imagination at all.  Kaelan loved to line things up.  Reagan preferred magazines and books.  Leo used to eat all of our board books.

15.  Took a long time to comprehend simple phrases like:  "Do you want a drink?" Do you want to eat?" "Where's Mommy?'  "Where's Daddy?" and to respond appropriately.


16.  Walked on tip toes (Leo & Reagan) and jumping up and down in place while flapping their arms.  Right now, Leo loves to watch his fingers wiggle.

Again, these are signs we saw in our boys as toddlers.  In my opinion, the first 3 were my biggest clues.  All children have quirks and it doesn't mean they have autism.  You can even line up 10 children with autism and they will be nothing alike.  Autism manifests itself differently and what may be an issue or behavior with one child may not affect another at all.  The most prevailing traits of autism outwardly seen with all of my boys would be their social skills, speech and sensory processing.  Knowing how far Reagan & Kaelan have come, has given me the confidence to know that Leo has limitless potential.  If you have any questions or see some signs in your child, my advice is to talk to your child's doctor because the earlier intervention is started the better.  Studies show children who have therapies early on seem to do better than their peers who may be diagnosed later. 
http://www.wrightslaw.com/info/autism.index.htm


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Monday, January 23, 2012

Toot!


This was Izzy and Dasha's first experience with "Noise Putty"


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Saturday, January 21, 2012

Mr. Basketball


Riley shooting and making a 3-pointer

Riley with his Grandmothers

Riley with his Grandfathers
Riley adores basketball.  He's been playing since he was in first grade and we were thrilled when we heard about this league he's been playing in the past couple of months for high school kids.  It's frustrating being in a school system that is so large that kids have a very hard time getting on team sports like basketball.  Riley's height became an issue as other boys shot up, but now that he's almost 5' 11", he's definitely not the shortest anymore.  I just wish they ran the program year round because it's fun seeing him so happy doing what he loves.
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Friday, January 20, 2012

Rolling with the punches

           Day 4 of 56
Lily's 2nd resting spot.  Leo thinks it's a trampoline.  Uh Oh...

Matt thanked his Facebook friends yesterday for all their kind thoughts, prayers and well wishes for Lily and he added how Lily rolls with the punches better than anyone he's ever seen.  I could not agree more.  I've watched her go thru so much over the years and she's always bounced back.  Pinned as if paralyzed from the waist down, Lily seems to be accepting her 8 week fate.  She's flashing her beautiful smile, acting fairly content all things considered and is back to doling out her phenomenal hugs.

She's handling it better than I am. 

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Wednesday, January 18, 2012

Home bittersweet home

Day 2 of 56
Please keep praying for Lily to adjust to her new horizontal world.  After a traumatic ride in Matt's truck lying flat on the truck's seat bench strapped in with a harness and 2 seatbelts, we've decided we won't be taking her out unless it's absolutely necessary. She didn't care for her reclining wheelchair, but hopefully we can get her over that so she can come downstairs and be with everyone.  We tried putting her on beanbags, but she was just too upset.  We will try them again tomorrow.

I seriously don't know what we'd do without our iPad, portable DVD player and of course a TV.  It makes my skin crawl just looking at her legs & hips encased in that plaster frozen in position trapped.  I've ordered her a Castcooler per a friend's suggestion to help keep her dry and cool under her spica cast, especially since she doesn't really sweat and I'm worried she is going to overheat. Hopefully, it will be calming for her too.

We are taking it one day at a time.


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Tuesday, January 17, 2012

And this too shall pass.

I'm sure you'd all love an update on my sweet angel, Lily.  It's been an incredibly draining day, but we have good news and not so good news.  First off, I want to thank everyone for praying and thinking of Lily.  It means everything to me. 

So, we arrived at the hospital this morning with Lily oblivious as to what was to about happen to her.  When it was time for her to go to her surgery, they pushed her on a gurney with her iPad tuned to Barney all happy and excited watching the nurse blow bubbles for her.  I, on the other hand, was a mess.  It just never gets any easier to see one of my babies go off to surgery.  Lily is especially hard because she's dealt with so much in such a short time and post op with Lily, from previous experience, is usually a nightmare.

After an hour or so, the orthopedic surgeon came out and told us he was able to put her leg back into the hip socket manually without opening her up (this was the good news).  He also made sure that it held because there is a risk, with her lower tone and looser ligaments, it could come right back out.  He then put her in a full body spica cast (see picture below) to hold her hip in place and she has to wear it for a full 8 weeks (the bad news).  The care for this cast and the limited things Lily can do while in it freaks me out a bit, but it has to be done.  MARCH 13th is the possible removal date and that sounds so incredibly far away.  For Lily, this means she will be using a reclining wheelchair, a bean bag, the floor or a bed.  No chairs, no carseats for 8 weeks.  No toilet, no bath (except sponge) and no normal clothing.  I still haven't determined what we will do about school or therapies.  We need to adjust to our new temporary normal and get a feel for what is doable and what isn't.  I'd ask that you continue to pray for Lily.  She's having a very hard time accepting and dealing with all of this and it breaks my heart to see her so distressed.  Singing to her and holding her hand are about the only things really calming her right now.  I'm hopeful once we get home in the next day or so, she will get back in her comfort zone, start to relax and we will see her beautiful smile again.  

She also needs prayers that her hip and leg stay right where they belong once her cast comes off because if they don't we will be forced to do the surgery we avoided today where the doctor has to cut her bone near the top below the ball, place it in the hip socket, use a few screws, a metal plate (that would need to be removed a year later), shorten her ligaments and do the spica cast all over again.  


Right before they took Lily to the OR
Lily in recovery-not happy :(


Barney & the iPad are better than morphine




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Monday, January 16, 2012

Please pray for Lily

Tomorrow, Lily will be having surgery because she has a dislocated right hip. Surprisingly not from a trauma, but most likely due to taking Versed (see previous post) for her dental cleaning.  I believe it caused her muscle tone, joints, ligaments and tendons to go too lax which led to her leg dislocating from her hip.  One of the byproducts of having Down syndrome is low tone, loose joints, lax ligaments & tendons. Lily is quite the bendy girl appearing to be what most would refer to as double-jointed. I've written about hypertonia (double-jointed) here. She has on occasion had her hip lock up and usually she could push it a certain way and fix it on her own.  We saw a Pediatric Orthopedic Surgeon for this issue about 9 months ago and he wasn't too concerned because it always was very short term and never seemed to cause her any pain.

After we got home from the dentist on Friday, it took her a long time to be able to stand and walk.  I also noticed her hip kept locking up and at first she was able to unlock it every time.  Then after lunch on Saturday, she stopped being able to unlock her hip herself and couldn't walk again.  She couldn't bear any weight on her leg and kept holding it up by her waist most of the time.  Thankfully, she hasn't appeared to have any pain.  I called her doctor yesterday when she still wasn't able to stand up or walk and he had me bring her in this morning to x-ray her.  The x-ray showed the ball of the top of her leg next to instead of in the hip socket.  The x-ray above is kind of what it looked like except it is her right leg.  They are going to put her under general anesthesia tomorrow at 12:15 and her doctor is first going to try to put it back in place by manipulating it from the outside of her body.  If that works,  the doctor will then check to make sure her ligaments, etc. hold it in place.  If they have become too lax or stretched then he will have to surgically go in to shorten them so this doesn't happen again.  Another scenario is the doctor will be unable to get the ball of her leg to go back into the hip socket.  If this happens, then he will have to cut the leg bone and place it where it belongs plus possibly repair or shorten the ligaments, joints etc.

All three scenarios include Lily wearing a body cast for 6-8 weeks.  I'm feeling completely overwhelmed by the enormity of it all for her recovery.  I'm not sure whether she can sit up with the cast or how we are going to deal with going potty, will she be able to go to school and ride in her carseat.  I'm clueless and didn't think to ask about these details today.  I'm especially worried about how Lily will handle all of this. She is NOT a good patient and usually flips over any and all things medical.  She is justified from all that she has endured in her 8 years.  She had open heart surgery when she was 4 1/2 months old, eye surgery at 16 months, Tonsils & Adenoids removed at 6 1/2. She's also has had multiple pokes, prods, echos, x-rays and scopes over the years and I hate seeing her so traumatized.

This aspect of Down syndrome is the ONE thing I wish I could change.  I wish I could wave a magic wand and cure her of every health issue that is a direct result of having an extra chromosome.

I believe in the power of prayer and I'm grateful for any prayers said for my sweet baby girl.
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Saturday, January 14, 2012

Not what I expected


Yesterday, I took Lily to our pediatric dentist to get tortured her teeth cleaned.  Over the years, her anxiety has increased to an unmanageable level.  She kicks, hits, struggles, wails & cries while the dental hygientist tries to clean her teeth.  It is horrible to witness Lily so terrified especially when we literally have to pin her down.  She is in fight or flight mode and it gets worse every time we go.  Our dentist suggested sedation for Lily over a year or so ago, but we held off.  After discussing it with our dentist (who we really do love) again after the her last cleaning, we decided to go ahead and try it this time. They called it a conscious sedation.  I guess I didn't listen very well or maybe they didn't explain it very well, but I thought she would go to sleep and we would all just sit there calmly watching the hygientist clean her teeth thoroughly.  Hey, we might even actually get an x-ray or two.

That's not how it went down.  With Lily's heart history, her cardiologist requested they do a pulse ox during the entire procedure to monitor her.  Lily also had to have a massive dose of liquid antibiotics (16ML's or about 3 tsps) an hour before the procedure on an empty stomach.  Once we arrived, they took us to a room to check her weight, blood pressure and pulse ox.  Now, if you know Lily at all (and they do), you would probably assume if she flips out over a teeth cleaning then she probably would flip out about having her blood pressure taken.  No matter how nicely you word it ("it wants to give your arm a hug"), she's not going to cooperate.  So we get her nice and revved up before I even have to attempt to (force) get 13 ML's of grape Motrin and Versed mixed together down her throat.  She wouldn't have it.  So, to distract her I took her to the potty and then she was calm enough to gag down the drugs.  They told me it would take 30 minutes or so for the medicine to kick in so we sat in the room and waited.  Within 15 minutes, Lily started to lose her balance.  She started falling face first onto the floor looking completely drunk.  I tried to get her to lay back on their little bean bag, but she just kept trying to sit up and failed miserably.  Her low tone went from extreme to no tone at all.  She looked slack-faced and blank for the most part.  Her speech was extremely slurred.  It was pretty disconcerting to me to watch.  They finally came to take us back to the room about 40 minutes or so later.  I had to carry her 53.6 lbs of dead weight to the room and then lay her on a papoose board that is a nice way of saying modified straight jacket.  I was okay with the papoose board because it kept her on the table, but what I wasn't prepared for was how Lily was still awake, still freaking out and hysterical.  The only difference in my opinion was that she was weaker and more likely to aspirate on her saliva in her prone position.  I asked them to raise her head (which they did) and then sang every song I could think of to help try to calm her down.  After what seemed like an hour, they finally finished and I lugged her to the waiting room to put her coat on limp arms with everyone staring at her in horror. Definitely NOT a good scene for little kids to witness.

Once we were home, Lily couldn't walk and barely could sit up.  Her hip kept locking up (meaning she can't straighten her right leg unless she unlocks it herself) and it took several hours before she could walk normally again.  It was one of the worst experiences I've had to deal with and I won't be repeating it.  I'm thinking we will just take her in and deal with her fighting everyone once a year in the office unsedated. Then possibly schedule several little procedures in the hospital (blood draw, ear cleaning, thorough teeth cleaning, x-rays, etc) and put her under light general anesthetic similar to what she had when she had an upper GI done last year to get her other cleaning done.

I seriously hate anxiety and what it does to my beautiful sweet girl.
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Monday, January 9, 2012

A girl named Leo?

At least the medical profession seems to think so since every time we meet a new nurse or doctor, they refer to Leo as a she. I also have someone comment on my pretty little girl at least once a day no matter how boyish his clothing is. I wasn't ready to do the full plunge into big boy haircut, but I compromised (mainly because it's so hard to keep clean) and cut off about 3 inches of curls. :sniff: Why do all my boys get the ringlets as babies that I HATE to cut off and all of my girl's get stick straight hair that's wispy?

BEFORE:




AFTER:


*As you can probably tell by Leo's teeth, I think it's time to start limiting his pacifier to crib time only. It's been a lifesaver letting him use it for so long because he enjoyed eating/destroying books for so long. Riley and Kaelan used to have the exact same smile. :)

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Sunday, January 8, 2012

Feeling a bit lost in a "perfect" world

Do you ever get the feeling like you have a giant booger on your face or maybe forgot to put pants on before leaving the house? I do. I catch people staring or even gawking at us every.single.day. I'm not talking about short little covert glances, but big wide eyed "OMG, would you look at that family!" stares. There are days that I feel like we are the accident in the road and everyone is rubbernecking to get a peek at the gore.

Sometimes, it's for the sheer size of our family (which by Dugger's standards, we are kinda small). Other times, it's the "Down's" element. Many times, it's because one or more of the boys are doing something obnoxious, fighting with each other or being disrespectful to us (have you ever tried to rationalize with someone on the spectrum?). There's also the adoption element since Izzy sticks out with her striking jet black hair, black eyes and mahogany skin. And wait, we can't forget Leo's pepperoni sized birthmark on his head because it definitely gets it's fair share of horrified looks.

Some think I'm being paranoid or over sensitive and maybe I am, but if you constantly feel the stares and catch people whispering or even pointing at your family, you get sick of it. You want it to stop. C'mon people, we are not a circus act.

Another thing that just kills me are the questions or comments. "Are they all yours?", "Where'd she come from?", "Where'd you get her?" (usually said right in front of Izzy), "Does she have a little Down's?", "OMG, what happened to him?", "Are you done?", "Better you than me", "I could NEVER do what you do?", "Wow, you must be so patient.", "How much did it cost?", "Why is he/she doing that?" and the ever favorite "You sure have your hands full."

Or, they want me to diagnose their friend's friend's friend's child with autism because they act bad, weird or don't talk and they are 2. I know I should probably have an honorary PhD in diagnosing autism since I have 4 on the spectrum, but I've come to learn that most parents don't want to hear from their friend, sibling or friend's friend that there could possibly be something wrong with their child. I'll leave that conversation up to their pediatrician.

And you know the part from "Welcome to Holland" that says "But everyone you know is busy coming and going from Italy... and they are all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."" Lately, I think this hits me the hardest. While we are immersed in the special education world with IEP's, guided study halls, and therapy, it's been very bittersweet hearing about how so in so is picking colleges to apply to, or how their child is getting a C in something, or the 4 sports their kids are participating in this weekend that they have to watch, etc. When I'm home doing our thing, I don't really think about it much, but when we are with friends, family or just making conversation with people, I realize how vastly different our world is to someone who's kids are considered typical. It's a hard reality and I try not to dwell on it, but lately the thoughts creep into my head a lot. Things people take for granted like boyfriends/girlfriends, college, jobs, driver licenses, marriage, children/pregnancy, friends. All these life experiences are expected by most, but may never ever happen for some of my kids. It's something I thought I'd come to terms with, but lately as the boys have gotten older I'm reminded how much harder it is for them to obtain things like a driver's license, college degree or even a job. I can't imagine how I'm going to feel when Lily and Dasha reach their teenage years. I need to rethink and recreate a new mindset so vastly different from what was my "normal" growing up that matches my kids abilities and wants. I need to be at peace with this so I can guide and help them be happy and successful in life no matter what comes their way.

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Saturday, January 7, 2012

Going down memory lane -Our adoption videos

I was cleaning (never ending in this house) and found our DVD of Izzy's adoption video I made 4 1/2 years ago. It has been so long since I'd last watched it. Time sure does fly. Izzy has been home since July '07 and Dasha since October '08. I can't believe how much they've grown and changed. I showed Izzy and Dasha their videos and they loved them. In case you'd like to reminisce with me, here they are:

Dasha:


Izzy:

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Sunday, January 1, 2012

Solemnity of Mary, Mother of God


Happy New Year!! I thought posting Matt singing Ave Maria for the Feast of the Blessed Virgin Mary, a Catholic Holy Day, would be a nice way to start out the new year on my blog.

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Friday, December 23, 2011

O Holy Night - Merry Christmas everyone!!

I finally was able to talk (aka- nag) Matt into letting me record him singing "O Holy Night" because it is my favorite Christmas song and I wanted to share how beautifully he sings it.


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Wednesday, December 21, 2011

School pics!













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