Thursday, October 25, 2012

Approaching day 365

In a few weeks Noah will reach his FIRST birthday.  Crazy that time has flown by so fast and yet stood still in so many other ways.  I was forewarned that the first few birthdays are hard on "special needs" parents but like all things you have to experience it yourself before you can really understand what everyone tells you. 

The first birthday marks 365 days that our sweet Noah has been a apart of our family.  It marks the billion upon billion of kisses we have given his adorable face. It fills our scrapbooks with pictures and memories marking every single holiday and event for the year.  It marks the first celebration we get to throw for our first born son and share with all of our family and friends just how remarkable Noah has grown to be.  This is what first birthdays are all about.  This is what Jeremy and I remind ourselves all the time.  This is what I have personally been forcing myself to focus on more than what I was told I would feel.....but sometimes the grey moments still creep in and I can't help but feel the moments of melancholy that make my eyes glisten and I find myself catching short breathes and bits of sorrow. 

Even Mother Theresa herself had moments of jealousy and sorrow.  I am only human and I have been given the gift of feeling every kind of emotion there is to have...and I do...all the time...good and bad. For the most part I have been able to really hold tight to all things positive and uplifting.  I have found the ability to see the good in all things bad or uncomfortable.  I have learned a great deal of patience and I think I have grown really strong on the inside.  I have this new idea of what truly makes someone a superhero as I have now met many throughout this year.  One smile or giggle from Noah can completely erase an entire weeks worth of struggle and despair and to me that makes him my own personal superhero.  I have learned how to still have a typical day after a night of zero sleep and how to leave the emergency room and still get my grocery shopping done the same day.  I have learned how to accept help and even ask for help which is one of the hardest things I have ever learned to do.  I found out that I have what people refer to as Pride and have had to push that pride aside to accept financial help for our son. I have found out that me being an open book as gotten Noah more services and aid than shutting our lives inside a safe little bubble.  However, I have also found out that I can feel the darkest deepest saddest feelings and emotions as well. These I hate!  I can't control what my mind wonders to as I lay there and try to fall asleep some nights.  Worry, anxiety, stress, confusion, anger, gut wrenching despair just to name a few.

As his first birthday approaches I have been struggling with a few things.  First being the fact that I have not found my inner Martha Stewart and gone crazy over making handmade invitations and ordering decorations like I have always done in the past with any other celebration.  I want to and I come up with some good ideas but when it comes down to actually doing it I just fall short.  This was bothering me so bad because I knew something was wrong for me to be acting like this.  I knew it was more than just being tired.  Then one really bad day at work happened and I sat there at my desk being blinded by thousands of lines of data on a spreadsheet when it hit me.  I am sad.  The reason I couldn't seem to pull myself together for Noah's birthday was because I was dreading it.  I didn't want to be reminded that a full year has passed and he is still unable to do so many things we thought he could do by now.  I didn't want to cry over a birthday cake I knew he couldn't eat nor would he be able to smash and get messy in like any other 1 year old.  I didn't want to think about shopping or even looking at toys that at his age are all pretty much developmental in some way and beyond his capabilities.  They would just sit in a box not being played with because frankly Noah can't play yet with toys.  Then in that utterly dark moment I continued to fall deeper and deeper into the dark hole of gloom. 

It is so easy to fall in these moments and takes literally seconds before you fall so far down that you end up with a bump or break or bruised ego in my case.  Then, you just sit there in the bottom of this stupid hole getting mad at yourself for falling in the first place and letting yourself get to that point of sadness. It is hard to look up.  It is hard to try to come up with the strength or courage or even desire sometimes to want to get out of this hole.  Sometimes I find that I have to just sit there for awhile and think or speak or share all my negative thoughts swimming in my head to just plain get them out of my head so that I don't feel so weighed down and can finally start to stand up again.

This is exactly what happened to me this past month leading up to Noah's birthday.  I fell.  I got sad.  I got mad.  I then shared.  I talked.  I got the thoughts out of my head.  Then I looked up and saw the light of day again.  It is amazing how I find myself feeling after I have shared my worries.  It is like saying things out loud somehow is like proofreading my own feelings and emotions.  It shows me all the areas that need to be scratched out or rephrased or put more emphasis on and in the end I have a really good grasp on what I am truly feeling and not just getting carried away with. 

It is not day is Noah's birthday!  It is not the day to access all that has not happened but rather how much he has overcome and accomplished.  With a whip cream pie, those who love and adore him, and two completely enamored parents we are taking Noah's birthday and celebrating his adorable toothy smile, his chunky thighs, his award winning laugh attacks, and all the wonderful memories our internal cameras have captured and stored in our memories forever. November 11th will start scrapbook #2 and I am so excited to see what kinds of memories get stuck to its pages.

Wednesday, October 17, 2012

Disneyland 2012

Early 6:00am start to the day...all MICKEYed out in his new outfit

At first I was hesitant to bring Noah to Disneyland.  First of all...we would be driving there the day he turned only 11 months old.  Is 11 months too young for Disneyland? Second, I worried about the heat since Noah cannot sweat.  Would it be just too hot for him to enjoy?  Third, the noise.  He is so sensitive to loud sounds so would this entire trip be kept calming him down from all the loud bangs and screaming kids?  I had a few more reservations but I decided to throw them all to the wind and just try and enjoy myself the best I could.  I packed Noah's portable fan, like four sets or ear plugs, a front carrier pack (with an extra back brace for myself), and off we went.

He loved all the sights and sounds

The weather was perfect and hovered in the low 70s the entire time which meant we could keep all the cool packs and fans and coolers back in the hotel.  The noise level stays constant for the most part so that was never really an issue (except for one ride I will mention later). Also, 11 months old is like the new three years old because you can take any infant on any ride that you would take a three year old on.  Well, most of them anyway.  Your child has to be able to sit front facing on your lap and then you are good to go.  We took Noah on so many fun rides.  Here is a quick list of them.

Being silly and laughing away
Small World
Peter Pan
Snow White
Mr. Toad
Little Mermaid
Pirates of the Caribbean
Haunted Mansion
Monsters Inc
Bugs life Caterpillar ride
Jungle Cruise (this was the loud ride from the motor and the speaker he cried on)
Alice in Wonderland
Mark Twain Boat Ride

First Family Disney Trip
Disneyland was wonderful.  All the colors and music and characters and staff that were so happy and helpful.  It doesn't matter that you are carrying around a baby or that you made reservations for a fancy dinner and are carting around a completely packed stroller...they make room for you and welcome you.  The bathrooms are all equipped with changing stations if you cannot make it to the provided Baby Care Center.  If you are stuck playing with the baby while your significant other is on a ride.  They get to grab a Parent Pass on their way out and you get to hop on that same ride while skipping the line.
Mark Twain boat ride made him smile

Noah loved the Dumbo ride and Small World the best.  He would stick his tongue out on the Dumbo ride to feel the cool air and would smile.  He giggled in Small World and even enjoyed himself on the two drop off points on Pirates of the Caribbean.  All the hustle and bustle of everyone around us only added to the stimulation and "vision therapy" for Noah.  He was looking around and smiling and giggling and just enjoying himself as much as we were enjoying ourselves.
We would go back in a heart beat.  No hesitations.  No questions asked.  Disneyland truly is a magical place for everyone. 

Day #2 bright and early once again
Getting ready to go on Dumbo for the second time

Dumbo was his favorite ride

Small World was his second favorite.

Monday, October 8, 2012

Genetics Test Results

We received a call from the genetics department at Primary Childrens Medical Center informing us that the micro array snip test that was done on Noah has come back showing NO deletions or malformations on his chromosomes :)

We kind of already knew that this might be the case and actually this makes us really really happy.

Some have asked "What does this mean....What now?"

This means that Noah's chromosomes are not showing any form of identifying cause to his condition but it also means that he does not have any of the long list of conditions that would have shown up on his chromosomes.  This is great news because many of those conditions are very disheartening and could have caused many other complications to his future.

Now, this test is only one of many tests that can be done on Noah's blood/DNA.  Other tests are available that would map specific genes.  However, these tests are very very expensive and at this time we feel that it is best to wait until they are covered by insurance.  Our genetics doctor told us that in five years there will be many more tests available to us and at this time there is no rush to doing these tests.  We feel really comfortable with this thought process.  We knew going into this testing that we would have less than a 5% chance of even finding anything.

For now we are reassured with the fact that Noah does not have any of the other chromosomal deletions and also with the fact that our chances of having another child with SOD is extremely unlikely.  Not to say it can't happen because nobody has ever found a cause for SOD, but it is very unlikely and we like those odds.