Happy 13th Birthday!

It is hard to imagine - 13 years ago  - I held my sweet warrior in my arms for the first time.

People often ask me "when did you know".  When did I know something was different about Anderson?  In utero?  Later?  How old?  It does not offend me when people ask me questions.  Again, I believe I am suppose to share our journey, share what we have experienced to help others on similar journeys.  No one asks to be a part of the "special needs club".  It is something we are thrown into - and we blaze our trails.  Actually - our kiddos - They are the TRUE trail blazers!

I knew the minute I saw Anderson in the recovery room.  Anderson was my 3rd c-section.  I was still in the operating room and Charlie went with our new, sweet, baby boy to recovery while I finished up (very normal for c-sections for baby to beat mama to recovery room).  I can remember still so specifically the moment they put Anderson in my arms, I looked down at him and my first words were "What is wrong with him?"  (Charlie will tell you - this is a 100% true story - my first words).  The nurse and Charlie assured me NOTHING was wrong - WHY would I say such a thing.  I asked again, "What is wrong with him?"  I got the same response.  In fact, the nurse started rattling off his stats (APGAR, temperature, etc)  I said, "Something is wrong"....... it would be 3 months later he received his first medical diagnosis - TORTICOLLIS.

The past 13 years have been full of surprises - both good and bad.  Regardless of the roller coaster it has been, I could not be prouder of Anderson.  He works so hard every day to do his best and make us happy - mama happy he will ask me.  Every year, I am grateful that I can look back and see how far he has come.  And to think back to when he was 18 months old - did not speak, only cried, not even the sound of laughter would come out of his mouth when he laughed, he did not walk, he did not lift his arms above his head, he could not switch a light switch, turn a page of a book, pick up a cheerio, etc.  And, I look at the 13 year old boy that JUMPS with all his might off the diving board, rides his bike (currently with training wheels), speaks 3 word SENTENCES to me, and loves to play Lego mini-figures..... I am amazed and in awe of him....EVERY.YEAR....EVERY DAY.

I am also in awe of his amazing 3 siblings.  I can NOT imagine growing up in a house where your entire life revolves around your brother.  EVERY.WAKING moment (which starts at 6am when he wakes up) revolves around Anderson - don't say that word out loud because it will trigger a tantrum (pool, Target, etc) - we can't attend the fireworks because Anderson will have a melt down, Anderson has a doctor's appointment, he has therapy, he is in a bad mood, Anderson wants to do this, lock the door or he will escape, we can't, don't, careful.... and YET, these incredible 3 siblings handle it all with patience, love and grace.  They love their brother, they are so proud of him, they love to share him with others and they celebrate him.  What a gift it is to witness this on a daily basis - the love and compassion is undeniable and fills me up even on the hardest day.  God has gifted me with 3 of the best cheerleaders with an incredible amount of maturity and understanding for such little people - it humbles me.  Here is a post that Kaitlyn posted on her Instagram account 5 years ago (Kaitlyn was 11 years old at the time)......

Anderson's birthdays are hard for me.  They are reminders of where he "should be" - 13.  TEENAGER - riding his bike to his friends, playing sports, playing instruments, hanging at the beach by himself....and yet, we are far from there.  It has taken me a long time to reverse my thinking - and instead of being sad where we "should be" - I celebrate where we "are".  It seems that leading up to the day is when I am most anxious.  However, when I woke up this morning, I was elated.  I realized there is so much to celebrate!  This year I celebrate he is off his seizure medication with NO seizures.  I celebrate him connecting dots of his surroundings and consequences to situations.  I celebrate the language.  the language.  the language.  He says to us now "USE MY WORDS".  When he gets mad and frustrated - he tends to scream in frustration.  We have been telling him to use his words and tell us why he is mad.  He is doing this and will tell us - use my words. His doctors and therapists always have told us that his #1 challenge would be language - he will be frustrated....and he is....however, every year his language increases - the number of words and the intelligibility of these words.  With the increase of language - we will eventually see a decrease in frustration - what a win for all of us.  As he woke up this morning he said to me, PARTY!, THIRTEEN!, PRESENTS!!  So much joy and happiness to celebrate!

Anderson had his 2nd birthday party EVER on Sunday, July 7th.  We had a birthday party for him in Orange County, it was 4 months after his brain surgery.  We had a BIG party with our friends and their kiddos - celebrating Anderson and his success following his surgery.  It was wonderful.  It was a party for the adults.  SUNDAY- it was a party for ANDERSON.  His best buddies (8 of them) were able to make it to We Rock the Spectrum.  Meagan, our nanny of 3 years that moved to California, was in town and surprised Anderson as well at the party!  They boys (and Meagan) laughed, smiled, jumped on the trampoline, did the zip line, swings, etc.  They sang Happy Birthday to Anderson.  I have never seen Anderson smile as much as he did on Sunday.  He was in heaven.  It was his 1st birthday party and I think he is ready for his next!  What a wonderful day!!  I am still smiling about that day myself.

This week as I was driving, I heard the song "Wonder" by Natalie Merchant.  I have not heard it in the longest time (months and months).  Growing up, I LOVED to listen to Natalie Merchant.  She was/is one of my favorites.  I think God spoke to me this week and told me to LISTEN - really listen.  As I sang the song - I thought of my boy.  I thought how I have been singing this song since 1995 and I never really thought of the lyrics.  For some reason this week, I really listened to them.  They made me cry..... I think it was God telling me all is gonna be ok.  Here is the song and the lyrics......


https://www.youtube.com/watch?v=6zpYFAzhAZY&list=PL9C03E7E67B494606&index=23

WONDER

From the album Tigerlily
Doctors have come from distant cities just to see me, stand over my bed disbelieving what they’re seeing. They say I must be one of the wonders 
of god’s own creation and as far as they can see they can offer no explanation.
Newspapers ask intimate questions, they want confessions. They reach into my head to steal the glory of my story. They say I must be one of the wonders of god’s own creation and as far as they can see they can offer no explanation.
I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.
People see me; I’m a challenge to your balance. I’m over your heads; how I confound you and astound you to know I must be one of the wonders of god’s own creation, and as far as you can see you can offer me no explanation.
I believe fate smiled and destiny laughed as she came to my cradle, “know this child will be able.” Laughed as she came to my mother, “know this child will not suffer.” Laughed as my body she lifted, “know this child will be gifted” with love, with patience and with faith she’ll make her way.
Natalie Merchant / Indian Love Bride ©1995

Natalie said the song "... was about a child born with a congenital disease," twins she had known personally.  

This week, after I heard the song, I came home to google the lyrics - could I really be "hearing" what I have been singing all of these years later?  I cried.  Anderson has and continues to "baffle doctors" literally across the country (we have doctors from California to Florida and in between)..... they all say they are "hopeful".  A neurogenetic doctor told me 2 years ago - after the 12+ current medical diagnoses - he does not think we have truly "uncovered" his main diagnosis....none of it "really explains" what is going on with him.  This doctor told me to just keep doing what I Am doing since he is doing so well with the help of his team of doctors.  And, as the songs says, "know this child will be able, with love, with patience and with faith she'll make her way".....  and I still cry typing this.  Anderson teaches all of us love, patience and faith.

To think I have been singing this song since I was 20 years old - and now at age 44 years old - I have the true meaning and it speaks such volumes to me.  My heart tells me God wanted me to hear this song this week - he knew my heart and he knows my worries and he knew I needed to have something..... I opened my heart and listened to that voice that speaks to me.  It spoke to me that early morning when I held Anderson in my arms 13 years ago that told me something was wrong - and I believe I heard WONDER on the radio this week - not by coincidence.  God knew.....he knew just what my heart needed.

I know "this child will be gifted" and he has so much love around him.

HAPPY 13th BIRTHDAY to our WARRIOR - who continues to amaze us - and the TEAM of doctors, therapists and teachers that continue to stand behind him. 

Yesterday

I find writing to be so therapeutic.  I can write down what I am feeling/thinking – it helps me process.  I use to run (before my 3 concussions) and it always felt SO good to pound the pavement.  It felt like my frustrations would hit the ground as hard as I would run.  I miss those days.  Maybe later today I will pop a few Advil and hit the trail.  The headache may be worth the relief I will feel after.

Yesterday was a tough day.  Well, lets face it; the past 12 years have been FULL of tough days.  My closest friends know that there are days of the year that are the hardest for me – Anderson’s birthday and Christmas.  These big “typical” events trigger a grieving process in me.  I work very hard at always finding the glass half full – it is what many of mamas do with special needs children.  It is what gets us up in the morning.  On these big milestone days, it is a reminder of where we “should be” and where we “are not”.  Anderson’s 1-3 birthday is coming and I think you can add that on top of all of this….

The past 6 weeks have not been pretty in our house.  We changed Anderson’s after school routine.  It has not been the best for him or for us.  He misses his after school activity with his peers, he misses the structure, and he misses that routine.  He comes home and is disruptive, angry, frustrated.  He is having behaviors we have never dealt with in the past – and frankly – I did not need anything new and additional.  I have been working with our caseworker to talk to the state about after school options for Anderson – that would provide structure and peer interaction.  The state IS NOT MAKING ANY decisions!!!  I am so frustrated.  It is causing for mass chaos in my house after school and a lot of stress on me.  Our kickass caseworker has been pushing the state workers daily with phone calls and emails and she is not getting answers.  This is where Mama Bear comes in – I have been on the phone and email today pushing for answers.  In addition, I submitted paperwork that will force them to make a decision, but it could be another 30 days.

Yesterday, Anderson was thrown off even more.  He had a half -day because of his school’s graduation.  I had to get him off the bus because our nanny has another job and could not come earlier to get him.  Since he got home early, I had to take him to pick Anna up from school.  He screamed from when he got off the bus at 2:20 until 5:15pm yesterday.  I thought I would LOSE my mind. 

It makes me sad to pick Anna up from school and not be able to talk to her about her day.  A friend asked me to get her daughter from school as well – and the poor friend had to listen to Anderson scream in the car.  I could not “reset” him.  This is what Charlie and I call it when he is melting down and we need to get him to calm down.  Our nanny came and I needed a break because it had been over an hour of screaming at this point.  She was able to coax him, Anna and her friend to go to the beach.  He was “somewhat” happy at the beach.  I got a text from my nanny saying he was losing it again.  He was kicking/throwing sand and hitting my nanny.  I was sick to my stomach.  I jumped in my car – parked at the trail of the beach - literally ran to the beach – and helped my nanny so she did not have to deal with it.  After another hour, I was able to calm him and reset him.  By 5:15, nanny and Anderson were off and doing there “normal” Tuesday schedule…..but the change in routine took Anderson almost 3 hours to calm down.  IT was awful for anyone that was around my house. 

Meanwhile, it was Ryan’s 8^th grade graduation pool and dance party yesterday.  All I wanted to do was be a “typical” mom and help the other moms prepare for these festivities.  Instead, I was home handling my special needs son.  Anderson requires 1:1 attention 24/7.  I believe God is working thru us and 99% of the time I can handle days like yesterday.  But, not yesterday.  I just wanted to be for a minute – a “normal family”.  I wanted to be the parent who can throw their name in the hat and say, YES, I will plan that party.  YES, I can decorate the pool.  YES, I will handle this committee.  I can’t do that – ever.  I never know what “season” we will be in on a month to month basis – a day to day basis.  I am a better “worker bee” – I can tell you the day of (sometimes the week of) if I can do something because I know Anderson’s mood and what is happening at home.  Yesterday I felt like it is just NOT FAIR, I know that sounds terrible, but it is how I felt.  The shitstorm at my house (and the one that has been happening for the past 6 weeks) was too much.  I had to call Charlie to pick Ryan up from his pool party, I had to pay my daughter to take the young girls to the beach to get them out of the house.  These are the things that happen around here that I choose to keep private.  It is the not so pretty side of raising a son with special needs.  But, I am being honest and open.  It sucked!  My nanny and I were both in tears at one point.  And, mama bear hit a wall yesterday. 

I always pictured myself president of the PTA, running committees at the school for the kids, being involved and getting to know other families at school.  However, God had other plans for us.  I manage our house and work on raising 3 “typical” children in a chaotic house.  I work on helping Anderson be as happy as can be.  It is a full time job that is exhausting.  But, I get jealous – jealous I can’t be that Mom that is with the other moms doing “normal” mom things.  So, as a fun day was happening around me yesterday – where I wanted to be a part of the festivities, not only was I home – I was in the midst of a MASSIVE melt down.  It has been happening for weeks and weeks now.  I am tired…. I am really, really tired. 

Today, with the start of a new day, I sent emails and made phone calls following up with the state to find out what the status was on our other options for Anderson.  Still no answers from them!  I came up with a plan on how to tackle some of the behaviors on our end while I wait their answer.  We tried a new medication a few weeks ago and I think it has also contributed to all of the above.  I believe we are working thru not just 1 "trigger", but multiple.  I need to clean up the mess the medication made, I need to get him back in his old routine and I need to stop these new found behaviors he has found consequently from all of the above.  (insert deep, deep sigh)

The love in the texts messages, phone calls, the coffees bought, the hugs, and the chocolate covered strawberries really filled me up today.  A doctor told us years ago that raising a child with special needs would be a process.  He said it would be a process that we would come and go out of - grieving stages of anger, sad, and ok.  Yesterday was a tough day.  I was in an anger and sad place.  I think the desire for me to be around for my other children, ME wanting to be a part of the fun of yesterday and not able - made it that much harder.

Thank you to my sweet friends who have reached out.  I have not had a chance to answer all the texts, I will.  For now, please know that your love meant the world to me and filled me up.  I felt all of the hugs sent.  God has put an amazing village around me and I am so grateful for my village. Mama bear may have hit a wall yesterday, but she is putting the pieces back together today - with the help of an amazing village that I call friends <3

H.O.P.E

It is incredible to me to have so many different comments on my FB feed this morning.  There is excitement, there is sadness, there is relief, there is hatred.  Many are asking, "How do I explain this to my children".  I am not writing this blog post to express my political views and how I feel about the outcome in the early morning hours.  But, as I read posts and watch the news - I come back to one thing that I live every day......HOPE.

To be honest and quite frank, I did not ask for a child with special needs.  I did not "vote" for this.  However, I get up every day and I CHOOSE to have HOPE.  I have hope for my sweet boy, who grows and learns every.single.day.  I work my A$$ off every day - with him on his homework, with his verbal ability,  researching, reading, connecting with doctors, connecting with other moms, connecting with therapists.  When Anderson did not speak at age 5, some naive/closed minded docs told me that he would probably never speak.  I did not listen.....I always had HOPE.  And today, he woke up saying another new word.....and has been for the past 3 years - surprising us all.  Anderson has taught us so many things in the past 10 years.  I could choose to not recognize them or I could choose to celebrate them.  We choose the celebration.  I love my sweet boy and the drive and motivation he has every day...and everything he teaches ME.

Today, I still woke up with HOPE.  I have HOPE that our country will be great.  I know that NO ONE is perfect.  We have all made mistakes.  I had candid and honest conversations with our children this morning, assuring them there are checks and balances, and assuring them the people of this country spoke and choose a president.  I am not changing how I wake up - I still choose HOPE. 

I could wake up every day - overwhelmed, sad, depressed, and angry with all that is on my plate.  This is not how I want to live my life.  Instead, I try to teach my children LOVE, kindness and HOPE.

Please be with me and wake up everyday and choose HOPE for our country. 

** ORIGINALLY I WROTE THIS ON 11/6/16 - I FOUND IT TODAY IN MY DRAFT FOLDER AND I PUBLISHED IT.