Fireworks and Autism/SPD

. Any parent of a child with Autism or Sensory Processing Disorder (SPD) knows how difficult noises, especially loud unexpected noises, can be.  It's NOT FUN.   Add into that the factor of getting over stimulated, and a bunch of other factors that could totally send our kids with sensory issues over the edge, and it makes a day like 4th of July - that's supposed to be a ton of fun - just not fun at all.

I know that since Noah was born, we haven't gone to a live firework show since he started expressing sensory issues but a few times.   So that means in 12 years ... we've gone two or three times.   I can think of one off hand.

We usually try to get some of the smaller fireworks that we can do ourselves, sparklers, that sort of thing.  We do those.... but we can't always afford to do that.   Where we currently live, if you sit outside you can see a couple of different displays.  Sometimes not so well because of the trees, but some get high enough for the kids to really see well :)   So the kids who WANT to go outside and watch.   Noah is usually one of them, Nathan is not.  

On 4th of July, for Nathan, it's just like any other day.  We go over to Nana & Papa's for a BBQ and then home and do what we do normally including his bedtime.   The rest of the kids play outside and come in after fireworks.

So one of my really good friends ran into an issued with her SPD child ....  they were out and setting off bottle rockets.  Normally he loves that sort of thing but this year either he got overwhelmed or something.  The over stimulating caused him to go into major (the worst she'd ever seen him in) melt down mode.  It took hours to get him to calm down.

So that inspired me .....  I thought of several things to help make a day like Forth of July run a little smoother....  

that one didn't look real good on facebook so I made this one too ....

For more information and other ideas....  

She found this link...
4th of July and Dealing with Over-Stimulation 

And I found these links.....
Tips for an Autism Friendly 4th of July
Autism Ears, Loud Noises and Fireworks! – Oh, My!

Celebrate in the RARE!

.Here at My Unique Flowers ....... we like to celebrate being unique.  Every soul on this Earth is UNIQUE ... no two are the same.  Some are a like, some can relate because they have been through the same thing and similar circumstances....   But there are a few placed on this Earth who hide the wings of Angels.  Their fights are ... just a little tougher, a little longer, and harder.  They gracefully navigate hurdles and obstacles as if they were nothing more than a feather in their way.  Others blast threw boulders put in their way with grace.

I have two children who amaze me on a daily basis.  As a parent, watching what they have to go through breaks my heart because I don't want to see them hurting, poked, prodded, struggling though things that a child at their age should never have to go through....   But as a parent, I watch these children stomp on anything in their way and become a SUPERHERO .....  I watch their friends, who struggle equally... become such STARS that no one could imagine reaching the depths of the adventures they go through.

When they cry, we cry.  When we celebrate, they celebrate.

We are lucky to hold these miracles in our lives every day.  We are lucky to witness the miracles of our own children and our friend's children too.

We are ......... amazed.

Today, we celebrate the RARE!  Today, we honor them!  Be UNIQUE ...

Article: Surviving Special Needs ... by ME!

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Surviving Special Needs

By Annissa (Mammarazzi13@aol.com)  © 2011

            It’s funny, some days, how people perceive you.  Some days, people look at you like you gave birth to a monster, and others, people feel the need to tell you how strong you are.   What they don’t understand is being a parent of a child with special needs has nothing to do with strength.  

            I personally dislike the phrase “special needs.”  Every person has a few special needs, a certain type of bottled water they prefer, the need to feel superior, or just those who enjoy not being noticed.   They are all special needs an individual has to cope with feeling comfortable.   My children, they are unique!

            My middle two boys are my medical miracles.  I have one child born with a rare disorder called Mosaic Trisomy 16, and was only one pound twelve ounces when he was born.  The Doctors, I was told later, pretty much had no hope of him having any quality of life.  However, he is 9 years old now and proved them all wrong.  Does he have hurdles, of course he does, but nothing like they tried to make me believe he would.  Then my 3 year old came along and he has what seems like a never ending list of medical stuff going on, from Autism, to missing part of his brain, to having a type of dwarfism, and more.  The thing I hear the most:

YOU ARE SO STRONG!

            Yeah, not so much!  It has nothing to do with my strength.  It has more to do with supporting my 

children and being there for them.  Doing everything that needs to be done to make sure they have a good life.  Having a wonderful support system, and finding outlets for myself and my family to create a type of normality.   Most of all, it comes right down to love.  LOVE is the key to it all, you’ll do anything for love.  

            Most parents of kids with unique issues would give anything to trade places with them, to protect them from the pain, and let them live in the innocence that most children get to experience in whole.   Most of us don’t break down until we’re behind closed doors, because we don’t want our children to see how much it affects us, because it’s not about us.  All parents just want to protect their children.   Unfortunately, those of us who have unique kids, we have to sit back and watch them go through things no child should have to.  We have to be their biggest cheerleader, their support, their parent, their friend, and sometimes their nurse. 

            So what about us parents?  How can we survive all this and not just fall apart.  It’s all about a few key things.

·         Trusted Doctors

·         Wide Support System of Family & Friends

·         Taking some ME Time.

And when one of those things isn’t in place, everything just feels off balance, so it is important to find that balance. 

            If you don’t like your doctor, keep looking!  We have gone through a few that we didn’t like, but for the most part, we have found a lot of wonderful people in the medical field.  Having that support system is very important.  Family, Friends, Church, even strangers will come up and offer help, there is nothing wrong with taking it!  It is sometimes hard to do, but you will need to take it.  Practice saying YES, instead of NO … followed with “we are doing okay.”   It’s okay, to not be okay!  Finally, finding some time for yourself is usually the hardest.  I know I’ve gone days where I don’t eat and it suddenly dawns on me when I’m not feeling well at the end of the day.  It’s hard to take time for us when our children needs us so much.  Read a book, take a bath, play on Facebook, find something that is selfish and just for you, for at least twenty minutes every day.  Even if it’s after your kids go to bed, and making yourself take the time before you go to bed.  

            The last thing I suggest is starting a blog.  It may not be for everyone, but I suggest it mostly so you can get out some of those pent up feelings that you don’t want to let out, because it’s not good to hold that stuff in.  It can be a private blog, for just your eyes, or a very public one where you share it with family and friends to keep them updated.  If writing is not your thing, that’s fine.   Just do it for yourself, most of you will find it therapeutic.  Who cares if no one but you reads it, you aren’t doing it for readers, you are doing it for yourself.   If you go public with it, it’s also a great way to get awareness out about your child’s medical issue.  Even if you go public, you don’t have to use names, or locations.  Give your family a cute nickname, call each of your kids something else.  Information you share is up to you.   And there are places of support for bloggers for Unique Families.   It’s always nice to be able to talk to other families who understand a little, or a lot, on what you and your family might be going through.

            Most of all, take time to capture memories with your children.  Photos, mementos, maybe even start a scrapbook.  It’s amazing how fast they grow up, how much they change, and it’s wonderful to sit back some nights and just take a walk down memory lane.  

            Our children are everything to us.  It’s amazing how, once they are born, it’s not about us anymore, it’s all about them. 

Pity, for Pity's sake: pt: 2....... (Sign the Pledge!)

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If you haven't read Pity, for Pity's Sake: pt 1 ..... please do so :)

Imagine, you have 9 and 3 year old sons, one is just easing back from a roller coaster of medical issues, weekly doctors visits, knowing that any of his major and minor organs could be riddled with his rare genetic disorder, much like his skin.  (Noah's skin biopsy reveled that about 30% of his skin cells were effected with the extra chromosome... and it was not in his blood at all, the placenta had been 100% Trisomy 16) ...  the fact that his kidney issues continue, makes mommy feel like it's at LEAST in his kidneys.  You can only hope for a happy "normal" life, but realize it may not be a reality.   You are divorced now, a single mom, you have put yourself out there dating, it's fun and you aren't taking it seriously really.  You never did it before you got married, and now you figure no one will want to take on a used woman with 2 kids, one who has medical issues and you'd never marry anyone who didn't understand what they were getting into.   Marriage, isn't in the future...  Their 10th and 4th birthdays passed us and before I knew it, the divorce was finalized... 

But then I met HIM ...  and my world changed.  We met on the internet, and the boys would see me talking to him on webcam, hear me talking to him on the phone, but my mom was in town, and when she flew back home, she was taking the boys for the summer.  I had the chance to date him, without the kids getting involved.  He ended up moving back to Wisconsin to be with me and I had to fly out to WA to get the Cal and Noah.  So I did... and while I was there, with them, I told them that they were going to come home and have a great new man in their lives.  Dennis and Mommy were planning on getting married the following year.   No one else really knew, but we had decided to haphazardly try for a baby together too.  We figured we'd give it a couple months, and then take a break, because I didn't want to be pregnant for the wedding.  We were away from each other for 2 weeks, and when I got home with the boys, we spend a lot of time in each other's arms {wink, wink} ...  so September we were going to start trying and I was just waiting for the cycle for August to end.  I was temping (charting) already to get into the habit, and getting really frustrated because the start of my cycle wasn't coming.  I knew I wasn't pregnant, I had all my ovulation symptoms my last day at my mom's.  Finally, Jenna got on my case, and yelled at me to take a test.  I had already taken one, it had been negative, but just to shut her up, I took one.   As I was walking up the stairs, I glanced down, and OMGosh....... THERE WERE TWO LINES......(Tuesday AM was my neg test, Thrus PM was the first one I got 2 lines on)

 And the lines got darker!

I called the DR's office, at that point, I had suffered 12 miscarriages (the 13th came on our 1st Anniversary, a couple weeks before Kaedyn was conceived), and my OB and I determined that I'd need to go on progesterone as soon as I got a positive result.  A beta was set up to keep an eye on my hCG numbers, and my prescription was filled for both the prog & prenatals. 

Soon it was time for the first ultrasound, the earlier, "let's make sure this pregnancy is viable" ultrasound and we saw his little blob and his flickering heart.  Sure enough, there he was.  I ended up having another one  between then, and the 12 week, because I was cramping and spotting pretty bad, but everything was fine.  Then came the 12 week ultrasound and yet again, I was watching my due dates travel south.  I was due on Mother's Day, (May 13) and by then I think my ultrasound based the due date, from the size of the baby, already in June.  I was scared.........

......... was it happening AGAIN?

Discussions with the OB, at 16 weeks I had the amino done, just to make sure.  Two weeks later, we found out we were having another boy, and he looked 100% genetically healthy! 

........ YAY, huge victory!!!

We found out just in time for our wedding, because we decided to get married now, legally, for the sake of the baby - we had been planning on it anyway!  We still plan on having a big wedding someday, but we decided we needed to focus on our family.  I was 18 weeks pregnant for our wedding...  

The day after Christmas, we went in for our 20 week ultrasound.  And just as we were ready to welcome in the New Year ...  we got the phone call that would, yet again, change our lives. 

"This is so-and-so from Dr. B's office, we have the ultrasound results and we need to speak with you about it."  Oh GREAT.  "First of all you have a very large fibroid tumor in your uterus with the baby, but everything should be okay there.  The baby has severe Intrauterine Growth Restriction," which we already knew, "He has a two vessel cord," there are three main vessels to an umbilical cord, "and we found a cyst in his brain."  WHAT??  A CYST in his BRAIN??  OOOOMGosh what does that mean???   "It seems to be stable right now, we just need to keep an eye on it."  She couldn't give me any other information, really.  I think she mentioned it was called {Dandy Walker} but I don't recall if she had told me or if I can found out at my next OB appt.   Pity was on the phone that day, I could hear it in her voice as she tried to keep ME calm.  Please don't freak out with me on the phone, I feel bad enough telling you all this after all you've already been through.   She hung up with me as quickly as she possibly could, she didn't want to be responsible for giving me information and dropping the heavy box of worry upon my head.   I wonder if the nurses and assistants all drew straws to see who got the short one, to make the call, because it was someone I had never talked to before.

A cyst in his brain........  I was terrified.   Something WAS wrong, because he wasn't growing.   As soon as I had found out it was called {Dandy Walker} I hit the internet for hope and inspiration, much like I had with Noah.   Only this time, I didn't find any.  All I found were words like {DEATH} and {HYDROCEPHALUS} and {MAJOR DELAYS}

...... OMGosh, it was happening all over again.......

{IT WAS HAPPENING AGAIN}

When I went back into my OB I broke down with my worries and he assured me that based on what they had seen, the baby's (he was still semi-nameless at that time, we called him Lil D because Dennis wanted to name him after himself, and I was going to let him have his way, although I didn't like it... who wanted to cause their little boy to have the nickname DENNIS THE MENCE hanging over their head....)  was stable and they'd keep a good eye on it.  I was having ultrasounds every 2 weeks from then on.  I had hypertension and was being monitored and watched for Pre-eclampsia, and I was having contractions so I was on moderate bedrest. 

It had gotten to the point where they were thinking, based on my blood pressure, I'd have to be delivered soon, it was sky high, but the protein was still stable.   But I was ordered the shots for the lungs, just incase.  They gave me one at one appointment, where the Perinatologist gave it to me, and then gave me the vile of meds to bring home, and go into to the OB office for the second dose. 

But Junior and I hung on there ...  and soon enough, about a month before he was born, his name got changed to Nathan Patrick, and that one stuck. 

I had been told various things through the pregnancy, we want you delivered by 33 weeks, 35 weeks, 37 weeks... it was fine it got pushed back, it meant that Nathan was doing better then they expected, but at 36 weeks, we knew it was time. 

Noah had been running a fever, he'd vomit a little, but the fever was so very bad.  He was complaining about a pain in his right side, he was not himself.  The fever was getting lower and going back up and dancing around.  We took him into the ER.  They did no testing.  He's afraid of the DRs and he will act as normal as he possibly could, and he was demanding me to read to him because he was scared, and the Physicians Assistant that saw him, said that he just had a virus without even really doing anything.  When we mentioned appendicitis, we were told he was to young.  What gets me, is he gave them a urine sample, but it was never run. 

We went home, Monday he seemed better, but Tuesday, the day I had another ultrasound an appt 2 hours away, possibly looking at being delivered that day, Noah woke up with a 104 fever and vomiting, he was lethargic, and I spent about an hour struggling with a choice.  Did I leave him home with my mom and have her try to get him in, or did I take him with me and have him see where we were going, which happened to be the hospital he was born at, 2 hours from home.   I kept thinking, if he gets admitted, at least we'll be in the same hospital.  Since Nathan had many issues, and was so small, we planned on delivering at the hospital with the NICU where Noah had been born.  I didn't want complications to arise and then have our hospital end up transferring him there anyway, and be in a separate hospital from him.

So Dennis and I packed up, packed Noah up, and Mom was going to follow with Calahan later.  It was April 17th.  I went through my ultrasound and appointment and it was determined that I would deliver on Thursday, April 19th.  Then we took Noah to the Ped's department where the Urgent Care kids are sent.  So we got him in, and ended up waiting in the office for an hour.  By then, his fever was back, and the little bit of energy he showed during my appointments was gone, he cried, he slept, he struggled and he was not his normal self.  The DR, when she finally came in, took one look at him... and knew something was wrong.  She ordered an IV, labs, x-rays, ultrasounds, and then said to come back down and she would probably end up admitting him.  When I mentioned appendicitis to her, and what the DR at home had said, she was appalled and said he wasn't "to young" ... and promised me she'd figure out what was wrong.   We ended up finding out that Noah's kidney's were failing and they were running all sorts of cultures on him.  He ended up, we found out after he was admitted, that he had C-Diff, which is a bad bacteria we all have in our bellies, but when we are on normal antibiotics, it doesn't kill the C-diff because it's to strong, normally, it stays dormant, but sometimes, when you are on meds (and Noah had been for an ear infection) .. it runs rampaged, and in Noah's case, it almost killed him.

Pity walked into the room, again, with pretty much every nurse and confused DRs.  Knowing his history, seeing me 9 months pregnant... it was hard not to look at us like that, especially when I was shoving my 9 month pregnant behind on a sleeping bench under Noah's window and wouldn't leave.  I didn't leave until I had to go down to L&D at 8am on Thursday morning to give birth to Noah's little brother.   That was one of the hardest days of my life, leaving one baby in the hospital, going down the hall, down a floor, to have another... 

Pity was there then too.  Only by now, I had let all my anxiety I had been fighting off take over.  I was breaking out in tears, I was a mess.  Emotional because I knew that Noah was wanting me, and I needed to be there for him, but I couldn't....  he was in good hands, my Mom and his big brother Cal, but I wanted to be there.  But obviously, I had to get Nathan out.  It was time for him to be born and I was scared.  Scared about everything.  

Things weren't so much a whirl-wind this time as they had been with Noah's emergency c-section, it was a little more calm.  Word had spread that my other son was up in PEDs but everyone tried to focus on now.  There were questions though.  "Why is he there"  "What's going on?" ... I was shaved, shoved with a catheter and wheeled back into the OR.  It took them 20 minutes to place my spinal this time.  I was shaking to death and really upset by the time they did, but I was so glad when they finally did ... I had a massive bruise on my back, though, from all the attempts.

That's when pity entered the room...  and brought along some luggage.  She planned to stay for awhile. 

Things went okay, Dennis finally came in and thought I had to be knocked out.  He hadn't been in the delivery room for his Daughter's birth because his ex-girlfriend had to be put completely under.  So this would be the first birth of one of his children, that he'd witness.  And he was all eyes.  I told Dennis, I didn't care about me, I wanted him to stay with the baby.  Where ever the baby went, he went.  And to take pictures.  Don't let the baby be alone.  So he did. 

Nathan Patrick was born at 11:07am on April 19th, he was 3lbs 4oz and 15 3/4 inches.  He came out SCREAMING ..... and I cried.  I cried with joy to hear his little voice, to hear his lungs working ...  to have what I wasn't given with Noah.  They brought him by me, for a quick look-see and a picture...  and then Dennis went with him to that room, behind the door, which was left open this time, where they had taken Noah.  Nathan's experience was the same one I had needed with Noah, but never got.

Then Pity started doing her dance.  For 36 1/2 weeks, he was extremely tiny.   Pity pity ... 

I was taken back to my room, various DRs would come in, tell me this was wrong, or that was wrong...  I heard things like "cleft palate" and "heart issues" and various other things.   Genetics was called, surely SOMETHING had to be wrong genetically, with all his issues.

What are the odds of one person having two such dramatically different children with such widely spread health issues...  with two different Dad's, no less...

He was in the NICU, funny enough, in the same pod, in the same bed spot, that Noah had been.   (Noah btw, had been released that day from the hospital, feeling better but not 100%, and he got to visit his baby in the NICU after he was born)  All the nurses knew me, remembering me from when Noah was in there.  I had kept in touch with a few of them.  I was told, I knew what to do, and they pretty much let me run Nathan's show as much as I could.  I'd reach in there, check his diaper, fix his leads, what whatever I could, that I knew, needed to be done.  I knew when to leave him alone, and I knew when I could reach in there and hold his hand.  Dennis, though, was another story.  This was his first NICU baby, and although he accepted Noah for all he was, he hadn't been there.  It scared him, just like it does every parent walking into it for the first time.  I taught him a lot of what to do.  How to change his diaper in the incubator.  How to kangaroo, how to tube feed him, how to burp a tiny tiny baby.  He was a pro, though.  He was showed it once, and that was all he needed.

Nathan was in the NICU for a couple weeks, he ended up coming home the Wednesday before his Mother's Day due date. 

Pity stuck around, hiding. I'd catch looks form some of the nurses, every time a new diagnosis came down the line.  I would catch it from some family members... Especially when they saw him with the NG Tube (which he came home with because he was having a hard time nipple feeding, because of his cleft palate)

 His tiny hands, and tiny feet amazed me ...

 But he did slowly grow........ he averaged about an ounce a week in weight gain.  That's it... just an ounce.  Sometimes less, sometimes more...  (ages under pics)

 4 months old

 6 months old

 9 months

 11 months

 One year old... STILL in 0-3 month clothes, some 3-6 month

Pity especially came out, after we brought Nathan home and in public.  After he got a little older and the questions would come.  "Oh how old is he?" and I'd tell them... "Really?  He doesn't look that old!"  Well he is.  My favorite reaction I would get when telling people Noah's age before Nathan was born, and Nathan's age was ...  "SERIOUSLY?" ... you could hear their heads scream "What is WRONG with him/them?" but be to polite to ask.  I would feel the need to explain that Noah was a 1lb 12oz preemie and Nathan was 3lbs 4oz when he was born, and that Noah has a rare genetic disorder, and Nathan has a cyst in his brain.   Then I get the "can it be fixed?" um, no, he has to live with it like that forever.  It could get bigger, it could cause problems, but right now it's stable and we are thankful.   Pity is in all of their eyes when they look at Nathan, but Nathan will usually turn around the situation and do something goofy, because that's who he is, and make them laugh.

(some of my fav pics of him, Dancing in the Rain - Taken just after his 2nd Birthday, on his Adjusted Birthday - May 13, 2009 - 2 years after he was due)

Once Kaedyn was born, and started to get to be around the same size - which didn't take long - I would be asked "Are they twins?"  Especially when out in this Cadillac of a stroller...

 (you can see the seats actually face either way, it's the BEST stroller in the world .. a pain to break down but who cares!) 

And I'd have to say "no, they aren't... there is 16 months between them."  To which I would often get the rubber necking between looking at them, and they would guess who was older.   Usually picking Nathan, because he had more teeth.   Then they want to know what's wrong with Nathan.  Pity comes back, and Nathan now ignores them.  Kaedyn is a ham bone and soaks up the attention, and sometimes, when Noah is with us, he doesn't understand why HE doesn't get attention like HE use to.  Nathan has gotten to be very stand offish to people...  they are okay, as long as they are at a distance.  Please don't get to close.. he doesn't like that much. 

 Nathan is in 12 month clothes for length (sometimes 18 months but the width swims on him, he COULD fit in a 9 month outfit if it weren't for how tall he was) ... He's in size 4 diapers, but I can still touch the tabs together.  Kaedyn is in 18 month to 24 month/2T clothes.  He's in a size 6 diaper and we're going to have to start potty training him soon because there is no where else to go after that...   Nathan's feet are in size 5 because they are LONG and Kaedyn's because he has Hobbit feet...

Here is Nate showing you how long his feet are... (these last 3 pics, btw, were taken just before I published this blog.)

Now that Kaedyn is BIGGER then Nathan, it's hard.   Nathan, you can tell, is noticing.   He'll be 3 years old in a few months, and he's only 18lbs, and 31 inches, Kaedyn is about 26 lbs.   He still hasn't been officially diagnosised with Russell-Silver Syndrome .. but it fits him so well.  It's a type of Primordial Dwarfism.  We have watched Kenadie's story on TLC.   She reminds us so much of Nathan, only Nathan is a little bigger. 

Pity is going to follow us for a long time, Noah's issues are easy to hide, but Nathan's aren't.  It's hard, because it seems like each year, the list of Nathan's issues grow with each year.  And grow...... and grow. and grow...   but we'll take whatever steps we need to in order to help Nathan have a strong will, a happy life, and as healthy as can be!

So let's stop PITY...  PITY is 100 % CURABLE .... take a stand against Pity, and sign the Pledge!  I did!

Pity, for Pity's sake: pt: 1....... (Sign the Pledge!)

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My world changed forever, for the better (and worse) ... in 2001. I was pregnant, and one of the only reasons I was staying in my marriage, at that time, was because of that. The changing forever, for the better, would be the baby ... and we're going to focus on that.

I remember the day I found out I was pregnant, I was certain I wasn't. CERTAIN. After 5 years of infertility and miscarriages, there was no way. But Sara (my DR's Assistant at the time) .. came in and said "Congrats, you are PREGNANT!" After asking her if she was serious, I broke down into rivers of tears. It was the worst possible moment I could have heard the news, my marriage was basically shattered. From that point, all I wanted was to see that baby's heartbeat, and to feel some sort of confirmation this wasn't going to be yet another miscarriage. That day came, and I saw his little fetal pole and the heart flickering away, strong as could be. This was it... he was going to stick...

With every ultrasound, my due date would get moved back... a few days... a week.. I was due March 17th, the ultrasound where we saw his heartbeat, they determined I was due March 22 ... If I was due March 22nd, I wouldn't have found out I was pregnant when I did, because I found out a week and a half after he was conceived. The following ultrasound, the due date based on size was much further off then that. So I took the triple screen, which lead to a chance of the baby having Downs AND Spina Bifida.. which lead to an amnio... which lead to me sitting in one of the exam rooms, with my ex-husband, my 5 year old son, and my mom .... when my DR came in and announced.....

........ Your child has something called {Mosaic Trisomy 16} ... he went on to explain it and it feel on deaf ears, I was in shock... I heard "rare genetic disorder" and "happens much in the same way that Downs does" .... and I was numb. Until I heard "Oh and by the way, it's a boy" ....

.... Pity might have been in that room, at that time, but it's hard to tell....  My DR is an awesome guy.  He never let me doubt that that baby would be born..... alive.  However, when I left the room, to numb to even cry ... there were some glances from others, I barely caught them in my tunnel of silence... but they were there... She's been fighting for another baby for so long, now THIS happens...... I could practically hear their thoughts.

What was THIS?  ... a child who would be born with some issues?  Issues I couldn't even be TOLD about because the condition is so rare?   That didn't make him any less special... that didn't make him any less wanted... it didn't make him any less LOVED!

When I got home, I dove into the internet.  Trying to find any sort of information, a light at the end of the tunnel, but I found nothing.  Not until I happened upon the website of the Disorders of Chromosome 16 Foundation.  THERE I found {HOPE} ..  not pity.  I even spoke to the president of the foundation, a woman who's child - with the same condition as mine - was the same age as my oldest son.  She sent me {HOPE} in the mail.  Along with a ton of medical documents, she send me a small, brown, kneeling and praying, TY Beanie Bear, named Hope.  I vowed that bear would be next to the baby the moment he was born.  As soon as I could get it there, it would never leave his side.

Then I met with other DRs...  Genetic DRs ...  and I saw cold pity ......  harsh pity.... "This is the way your child will be, no doubt" ... Mentally, Physically Delayed..... No Quailty of Life....  Your Child will most likely die in utero before it's even born...  if not, it'll die in the hospital shortly after, and if by some miracle ... your child comes home, it'll have no quality of life......We highly recommend that you interrupt your pregnancy .....

..... IT? ......  My child is not an IT ... he is a HE..... and he has a name, it's Noah ......   I wanted to shout it so bad.  Yell it ...  at this man who was fighting with me over outcomes and medical issues that my child may or may not be born with.   Over the GOOD outcomes I had read about, children I had read about, and not his cold medical statistics.   And I told him, as far as "interrupting" my pregnancy, which by the way it took me a minute to realize that hew as suggesting that I kill my baby just because he's unique! ...  I told him "That's not an option" ...  to which he shocked me by turning to my ex-husband and asking "And how do you feel?" ...  I felt like yelling again ...  "Who the fuck gives a crap how he feels, I said it's not an option!" and my ex just said "I feel the same way she does" ...  good answer...

Pity was in that room, Cold and Hard ... Unrelenting and Unfeeling.... screaming "I feel sorry for you because I don't think you have the capability to take care of a child like this, so lets hope this child dies on it's own" .. 

But he didn't, he continued to grow, slowly, but semi-steady ...  he would wave to us during ultrasounds, and flip around to flash his little boy parts as if to say "Here is a reminder" ...

And then I was rushed into the hospital sick with Pre-eclampsia, baby was having heart decelerations, things weren't looking good, steroid shots shoved in my skin to help him out... nurses and nursing students coming in and out, pity, pity... thinking "your baby isn't going to make it" ...  "it's time to send you away," my DR came in and said the morning of February 1st.  I was 33 weeks pregnant... "he needs to be born, soon, probably tomorrow" ..  tomorrow, was my Mom's birthday...  My Mom who was beside me holding my hand ...

In a snow storm I was loaded up into an ambulance with a fetal monitor and a nurse, who had been there to help me deliver my first son in the hospital I was leaving...  she tried to keep tracings of his heart-rate, but it was pretty pointless, he was tiny and moving around so much ...  but traces would be caught here and there...  I was scared.  Rushed into the hospital I had never been to, up to 2nd floor where the L&D wing was, and the level III NICU..... a NICU that could handle such a small, needy baby.

Everything was a whirlwind...  meeting DRs, blood drawn, ultrasound done, can't drink anything - you might have him today.  WHAT?  ... Not today, tomorrow.....  but nope, my pre-eclampsia was bad, his heart decelerations were getting worse, the placenta, they found out, was dying...  it was time to get him out.  Rush rush, more people, prepping, shaving, shoving a catheter inside me, coming in talking about chances of death and how this is an emergency, they'll have to do a classic cut to get him out which means c-sections from now on with other children, did I understand .. yes...  there was a chance the baby would die, did I understand ... yes...  they would ventilate the baby and get him to the NICU, I wouldn't be able to see him until later ...  whisked into the OR and the drape went up... I tried not to cry...  they were talking to each other, "should only be a few minutes" someone said... "you're going to feel pressure" ...  I swear that Noah hightailed it under my ribs because they had to dig to get him out ... but there was never a cry, not even a hint of one... no one said "It's a Boy!" or even bothered to stop beside me for a millisecond so I could see him.. all of a sudden "3:45" was being repeated around the room and finally, I asked "what is "3:45?"  and I was told "It's when your baby was born" ...  what?   He was born?  I had gotten there just after noon, and a few hours later, my second child had been born. My head shot around to the closed room, I knew they had taken him, I could see it ... barely ...  and I could see, through the waist high to head window all the DRs gathered around him.   My baby was in there, I didn't get to hear him try to cry, I didn't get to see him... they are telling me he might die, and if he does ... I won't get to hold him alive...  Pity had crept into me..... fear was taking over...... but I pushed it away as quickly as it came, and tried to focus on him, sending all my energy to him.....

I was taken to my room and various Doctors would come in, with reports and updates ... Nurses were in and out....... Pity walked in with each one of them, being unable to say much else then "He's Beautiful" "He's Handsome" "He's a Cute Little Devil" ...  I would ask how much he weighted, they didn't know.  I would ask if he was okay and get "he's stable for now, he's on a vent" ...    When can we see him?  "In a half hour.."

It was after 7pm before anyone came to get the family.  My Mom, my ex's Mom, our Son, my Ex, I insisted that HOPE the bear go with them, it was important to me, so they took Hope ... they all got to go back, they brought me back video and Polaroids, a diaper that wouldn't even cover my hand... Mom would tell me the diaper was so big on him that his Polish was showing...  (meaning his butt crack) ... He was clearly going to be a plumber when he grew up ...

It was after 9pm when finally, I got taken back.  There is no preparing you for what you'll see.  He was so tiny, not an ounce of fat on him...  he was 1lb 12oz and 13 3/4 inches long... he had 10 perfect, tiny, long fingers and ten tiny tiny toes...  he had wires hooked up to him from head to toe, and IV, and a vent ... and he was stuck in a plastic box...

Pity was in that room, with the nurses..... I didn't know it at the time, and wouldn't learn the fact until one of the nurses said something about it at a visit where we returned to the NICU ...  but they hadn't expected him to live through the night.  They were told, he probably wouldn't.

Instead, he relaxed and started breathing on his own, making efforts to where they were turning down the ventilator and after about 40 hours of being on it, he was taken off - and never went back on. 

Noah with Hope on 2-4-02

As time went on ... I stopped seeing Pity in all of their faces, and I started to see {AMAZEMENT} ... as they started to realize that he was an utter and sheer {MIRACLE}... he was nipple feeding at just a few days old and increasing his intake... 

Mommy & Noah on Valentines Day, 

setting up for Kangaroo Care - he hit 2lbs!

He was labeled as a "Feeder Grower" which meant they were just waiting for him to gain weight for him to go home...

His due date, St. Patrick's Day, was great for us because I'm Irish and I went over early that morning to find one of our favorite nurses had taken these to celebrate ...  with the shamrock I had made him, and he was in an OPEN CRIB

And he SMILED ....

And he came home the day after his St. Patrick's Day due date, on March 18th ...  weighing only 3lbs 10oz..

He continued to prove all those nay-sayers wrong.  Slowly but surely he thrived, he excelled and he met his milestones, late, but he met them.

He rolled over for the first time, on September 11th, I remember it vividly because it was the 1 year anniversary...

He started sitting just in time for Christmas ...

He started crawling at about 14 months...

And standing at about 18 months, walking at about 20 months...

We went to San Antonio to go to the first World Congress On Genetic Abnormalities Conference (or something like that) and it was one of the best decisions ...  we met a ton of awesome families... including a lot of families from our DOC16 Group...  and Noah hung on a famous photographer named Rick Guidotti, he called Noah "Little Buddy" ... Rick has made it a mission to show that kids with disabilities are not "ugly" but very beautiful.  His website is called "Positive Exposure" and he is a wonderful presenter.  He took these photos of Noah ...

Noah is about to turn 8 years old, in just a couple weeks...  he's an amazing kid now, his health issues aren't that apparent, but living with the fear knowing that anything can go wrong in his little body at any time, haunts you.  Fact is, we don't know when or if anything will happen, and we can only enjoy everyday and try to count on tomorrows.  His kidney issues scare me, right now.  But otherwise, he's a normal kid.  He struggles a lot with some understanding stuff, we are still working on the fundamentals of reading.  He can sound out a word perfectly but had trouble putting those sounds together.  Math is hard for him to grasp too, but he's such a smart kid - and he gets so excited when something finally clicks for him.

So let's stop PITY...  PITY is 100 % CURABLE .... take a stand against Pity, and sign the Pledge!  I did!

Read:  Pity, for Pity's sake: pt 2