Tuesday, September 25, 2012

Rainy Day

Today is just one of those days.  A day where you want to crawl back under the covers, and sleep your worries away with the rain drops.  In running my daily car pool this morning, trying to get everyone where they needed to be, I had a million things on my mind.  I need to get to they gym, what will I make for dinner, making out invitations for the bridal shower, etc etc.  I would have given my life savings for just one more day on the beach where all I had to worry about was keeping Frankie from getting too much sand in his eyes, and making sure Liv had enough sun screen on.  Reality was slapping me in the face though, and I didn't like it, not one bit.

I have to confess, vacation made me think about just how hard the past 18 months has been for our family.  It is the first time that things have slowed down enough for my mind to wrap around everything and try to process it all.  This was a double edged sword, because although it allowed us to relax for a period of time, it also allowed everything to really, really sink in.  For me it has brought emotions to the surface, emotions that I have been ignoring for quite some time. 

I am mad.  I am worried.  I am scared.  I am exhausted.  Now, I know that all of these are negative, and yes, I am also happy, excited, and hopeful.  The positive ones are easy to show, but the others, they tend to stay hidden deep down in a place that only I am allowed to visit.  All of this time, I have tried to keep a positive attitude, to look at all of the good things, while deep inside, the negative ones have been slowly chipping away at my spirit.  I need to be honest with others, and most importantly myself. 

I'm mad.  I'm mad that my boy, my beautiful, blond headed, brown eyed, baby boy has Autism.  I want to know why he has it, what has caused it, and what I can do to make it better.  I want to know why he has to try so hard to master simple tasks.  I want to know why he can't do or experience all of the things that his sister can.  It is true.  All parents who have a child with a disability always tries to let their child do and experience everything that other kids get to do, but I'm just being brutally honest, sometimes you can't.  I can't take Frankie to a place like Chuck e Cheese, it is a painful experience for him.  I can't take him to a bunch of ball games, because the crowd and the noise, it is just too much for his little sensory system to try to process.  Birthday parties, they are supposed to be fun, but we usually have to leave before they even cut the cake because all of the kids overwhelm him.  Yes, we try to do everything that he can, but some things he just can't do, not yet. 

I'm worried.  I'm worried about Frankie, and all of his treatments, therapies, etc etc.  I'm worried about Liv.  I'm worried because we have to devote so much time and effort toward Frankie, that she will feel left out.  That she may get over looked at times, because we are focusing on her brother.  Trying to balance raising more than one child is difficult even when everything is perfect, but when one child has a problem, it magnifies it even more. 

I'm scared.  I'm scared that things may not get much better than they are right now.  Frankie is making huge progress, and is doing well, but that doesn't give us the green light that all will eventually be OK.  No therapist, No doctor, No teacher has ever said that everything will be alright, and that he will be able to grow and experience life just like everyone else.  They say that we are on the right track, that we are seeing positive things, but they never tell you that your kid will be a good case.  They don't know, and we don't either. 

I'm exhausted.  I am tired from worrying, from staying up at night, wondering what I will do tomorrow to make things easier for my boy.  Having therapists in my house almost everyday of the week.  Trying to take Liv to extracurricular activities to make her feel as important as her brother.  Trying to keep a constant eye on Frankie, because at any given moment he may be climbing up the outside of the staircase to the top, or unlocking the door and running out into the street, or trying to jump in the creek, or eating the end of the pacifier.  Constantly putting things in his mouth, pooping out beads off of Livi's purse, you name it, he has done it. 

Maybe it is because today is a rainy, gloomy day, and my mood is the same, or maybe I felt like I had to get all of this off my chest and out in the open.  I feel though that I need to be honest about this journey.  There are people that ask my opinions on their children who are going through this process, and they need to know that it does stink sometimes.  It isn't all happy and positive thoughts.  It is a struggle some days to make it to the end of the day without crying at least once.  Then there are the good days.  The days where Frankie will do something new, or say a word, just one word.  Where he climbs in my lap and kisses my face a hundred times, because that is how he tells me he loves me.  The days where he and Livi play together, and laugh out loud at each other.  The days where she is concerned about his every move,  just like a mother hen.  The days where daddy gets home before dark, and we can all eat dinner together.  Those are good days. 

Being a parent isn't easy, in fact, it is pretty freaking hard.  It is hard whether your kid is normal, or if your kid isn't.  It is hard whether you work full time or stay at home.  As hard as it is, it also is wonderful, exciting, and filled with joy that just overflows my cup.  If I could make my baby better, I would in a heart beat.  The people who say that they wouldn't change a thing, they are really lying.  I would make things easier for Frankie in a second if I could.  I didn't chose this for my child, but I have to trust that the Lord knew best when he gave Frankie to me.  He has filled my heart in a way that I never knew was possible.  He captivates everyone he is around.  I LOVE him just the way he is.

 Tomorrow will be another day, and it could rain and pour, or just maybe the sun will come out. 

Monday, June 4, 2012

Finding Joy: Where the heck is she?

While sitting in a huge line of traffic on I 71 the other day, I was a little more than irritated.  I had one kid in the back seat licking the last of the sucker that was keeping him occupied while in this traffic nightmare, while the other was screaming at the top of her lungs that she had to pee and could not wait another minute.  After 15 minutes of crying that she was literally going to pee her pants in the car seat, I decided that since I had not moved in 10 minutes, I would jump out, open the van door, and let her pee right there on the side of the interstate.  I really didn't care that all 5,000 cars in the line behind us would see this wonderful example of parenting, I was just praying that the news chopper circling above us would not show it on live TV.  Door open, squat, pee, back in car seat in about 40 seconds.  Any mom would give me a big round of applause for this feat, because we all know how freaking hard it is to unbuckle and buckle car seats while under pressure.  After getting back in the drivers seat, I sat there, frustrated that I was stuck in this traffic jam and having a little pity party for myself.  For the first time in a long time, I literally just let it all out, and started to cry right there.  How had life become so difficult?  Why can't we catch a break?  Why is the semi in front of me not moving?  Where is my silver flippin' lining?  I never knew that bumper to bumper traffic could be so eye opening.

This past year has been difficult to say the least.  I keep hearing that things will get better, and that they will get easier.  Guess what?  They really haven't, at least not as much as I thought it would.  The constant worry of Frankie has already taken a toll on me.  I know that some may not understand this, but literally everyday, 100 times a day, I think about when or if he will talk.  If he will ever call me Mommy?  If he will be able to grow and learn like his sister?  Will he be able to be a "normal" kid?  Will he be able to grow up and have a family of his own someday?  The list goes on and on.  I know that I should not worry right now if he will be able to play soccer with the other kids, that I should think about today, but it is challenging.  I have literally been in a hole that seems to be impossible to climb out of.  Yes, people, I am having a big pity party.

This morning I was reading a devotional and it was talking about joy.  As I was reading it made me think of a verse that I memorized a long time ago in my summer church camp days.

 "Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything.  James 1:2-4

I'm not one that usually "preaches" on my blogs, but this is my blog, and it was so profound to me.  It was speaking directly to my heart.  It confirmed to me that right now may be difficult, but that there is a light at the end of this tunnel.  Not only that, but it made me look at all of the things that are good and wonderful in our lives right now, and that finding joy isn't quite as hard as I have been making it. 

As I was pulling in the parking lot picking up Frankie from school recently I noticed a beat up clunker of a car parking beside me.  The mom quickly got out and opened the trunk and took a wheelchair out of the back.  She hurried over to the passenger side in the back seat, where she got her little girl out, and put her in the wheelchair and was quickly pushing her in, because it was starting to rain.  Here I sat in my brand new mini van that has plenty of room, and I got my little boy out of his car seat, and he ran inside the building while trying to jump in every mud puddle on the sidewalk.  What a cry baby I have been.  My baby may not be able to talk, but he can run, play, jump, etc etc.  Joy was standing in the parking lot that morning. 
Joy was in my bed this morning, poking me in the ear, and giving me tons of loves.  Frankie gives me the biggest kisses and hugs every morning.  It is his way of saying "Good morning, Mommy!" 
Joy was in the traffic jam the other day too.  The fact that I didn't have to clean out pee from the car seat and that I found one more sucker in the bottom of my purse to keep my kids happy. 

Finding the positive in challenges is difficult a lot of the time.  Trying to be happy when you just don't feel like it is hard.  Everyday though, I am going to wake up and try to find Joy, where ever the heck she may be!

Tuesday, March 20, 2012


Ever have those days where you feel like your parenting skills are at an all time low?  Where it doesn't matter what you do something always goes wrong?  It seems to me that I have been in this slump for about two months now.

Since finding out that Frankie has Autism it has been very hard for Bobby and I as parents.  I still can't talk about it much because I always tear up and my emotions are still so raw.  Everyday I have to tell myself over and over that today is going to be a good day, and sometimes it is, other times it isn't.   I think as parents no matter what is going on with our children, we all have those days.  Trying to be positive and trusting that things are going to be alright is much easier said than done.  I feel like I am at a crossroads right now, trying to decide what path to take, knowing all along that no matter which way I choose that there could be both positive and negative outcomes for my child.
Which therapies do we chose?  Where do we send him to school?  Which school is the best?  The list goes on and on.  It is so difficult for me to grasp at times that this isn't a problem that I can fix.  Being a nurse and  Bobby being a physician, we are used to problems that most of the time have solutions.  We are accustomed to having a treatment plan for every ailment.  Take this pill and it will help the problem, or have this surgery and it will fix the problem.  With Autism there is no one treatment.  There are so many different opinions from  different professionals about what to do, how to do it, and when to do it.  I can talk to three different therapists about a plan of care, and all three will give me different answers.

 I am trying on a daily basis to find a silver lining in this situation, but there are days when it is incredibly hard.  We have to trust that the decisions that we make are educated ones, that have been carefully made.  We have to pray and trust that what we are doing is right.  If it isn't, then we will learn and try again.  I want to see immediate results.  If I give someone who is in pain a shot of Dilaudid, I know in a short time if it has been effective or not.  It is human nature to want instant gratification, we live in a society where we can fly across country in just a few short hours, where we can talk on the phone while picking up the dry cleaning.  It has taken months for us to start to see positive progress in Frankie's therapies.  It is positive though, and that is all that matters.

I want to continue to ask each and every one of you to continue to keep us in your thoughts and prayers.  I can't tell you how many well wishes, notes of encouragement, kind words, etc etc that we have received.  Thank you so much for the support.  When I look at my Frankie, he literally melts my heart and breaks it at the same time.  I at times wonder what he is thinking, if he understands certain things.  There is one thing for sure that he understands, that is Love.  He is the most loving child I have ever been around.  The hugs and slobbery kisses that I get at least a 100 times a day helps me deal with all of the challenges we face.  Hearing the occasional" wuv woo"makes me want to do a cartwheel!   I am so thankful for this wonderful child.

Monday, January 23, 2012

The hardest words to hear...

All too often we use facebook and blogs to keep up with long lost friends, we share cute things our kids do, or what we eat for lunch.  We open up on the surface, but we don't talk about what is really going on in our lives.  Although I don't think that sharing my most intimate thoughts and feelings with hundreds of friends is appropriate, I am opening up about a struggle in my life.  Not because I want sympathy, or because I want everyone to know my business.  It is because my family is beginning a journey that will be lifelong, with an incredible amount of dedication and hard work ahead of us.  I need the insight of others to take this on.  I have some incredible friends who may have advice and knowledge that I do not.  I feel vulnerable, I am fearful.  I am a mother that would do anything for my child.

Every parent can empathize with the feelings and worries that you go through when expecting a child.  You want your baby to be perfect in every way.  As a mom you try to eat all the right things, you follow every doctors order.  You can't wait for your bundle of joy to arrive, but the anticipation and anxiety for a healthy child doesn't go away until you have that sweet baby in your arms.  You count ten fingers and ten toes, they are good and pink, all is well.  You breathe a sigh of relief, you got them here healthy.  Everyone in the family tells you how beautiful the baby is, they look like daddy, grandpa, great uncle Bob...and on and on.  You go home all clad in blue, happy to begin this wonderful life with a new member in the family.  Everything is perfect, or so you think...

When Frankie was almost four weeks old, he gave us quite a scare.  He was hospitalized for pertussis (whooping cough).  Pertussis is a very dangerous childhood disease, and in a newborn can be fatal.  After almost a week, we were in the clear though, and Frankie got to come home on a breathing monitor, but was doing fine.  Again, we breathed another sigh of relief.
Life went on and Frankie seemed to grow and develop like any other baby boy.  It wasn't until almost a year later that I began to notice that something wasn't quite right.

When you have the second baby, automatically you compare their growth and development to the first child.  Livi didn't walk until the week of her first birthday, but Frankie was walking at 10 months old.  We thought that we were ahead of the curve.  I then started to notice some differences though.  His inability to pay attention to toys, his dislike of loud noises, he didn't follow simple commands like "get your cup" or "bring me that toy".  He wasn't speaking, but that didn't concern me as much because Livi didn't talk until later.  We live in a bi lingual home, so that is typical for children to speak later.  Then we got to 18 months old, and I started to notice that he can count to 10, but he doesn't wave Bye Bye...he doesn't look at me and call me "mommy".  I knew in my heart then that something was wrong.  I expressed my concerns to others but I got the typical answers, "He's just a rambunctious boy", "boys talk later than girls".  Then I questioned myself, "Am I overreacting"? I'm a nurse, my husband is a doctor, we should know what to do...That all goes out the window when it is your child.  The child you carried for nine months, the child that you love so much you would do anything for.  Then we did the right thing, we acted like parents, and we went with our gut feeling.  He was our baby, and we knew him better than anyone. 

We entered the First Steps program when Frankie was 20 months old.  He went through a series of evaluations and qualified for speech and occupational therapy.  We still didn't have any solid answers, but we had a plan in place to help our boy.  Over the next few months we began intensive therapies, at first, the progress was slow.  It became more evident though to others that in fact we were doing the right thing and that there were in fact delays.  
We are now almost a year into therapies, and we are starting to see some great progress.  Although his speech is still very delayed, he is starting to begin to use a few more words.  His social interaction has drastically improved, but there is still so much more work to be done. 

Over the past two months Frankie has went through some very intensive evaluations with the best professionals in the area.  On Friday we finally got a diagnosis.  Frankie has Autism. 

There are no words to describe the feelings that you have when you hear those words.  In our minds we both knew that it was likely, but in our hearts we were holding onto the hope that it wasn't so.  Later that afternoon I was laying in the bed with him watching him nap and I realized that this was the beginning of an incredibly hard task, that would last a lifetime.  A task that I never expected, but at the same time realized that I had to step up to the plate.  My child will have to try 10 times harder than other kids just to master simple tasks such as saying "mommy".  We will have to be dedicated as parents like never before to do everything that we can in order to help our child. 

I look at this beautiful, sweet, loving baby boy and he absolutely melts my heart.  His smile can light up a room, and his energy is felt by everyone around him.  His eyes are bright with a sparkle that immediately gets your attention.  He is a gift, he is wonderful, and he is mine.  He is LOVED. 

I am asking that you will help us in this journey, with prayer, advice, and encouragement.  I am typically a private person, but I will do all that I can to help my child.  We are blessed to have the best therapists and schools.  Our family is incredible.  The next step is to continue to bombard him with therapies, and be educated on the path that we need to take, as well as more testing.   Again, please keep us in your thoughts, this is the beginning of a journey that is going to be incredibly hard, especially for my perfect boy.