These are the days of our life...

 

     I didn't even blink when my son was given his diagnosis of PDD-NOS.  I didn't need the neurologist to tell me what my soul already knew.  But lets get one thing straight just because I didn't break down doesn't mean I didn't and don't have my moments of feeling sorry for myself.  Yes, myself, not him he is a happy little boy.  He was given the diagnosis at 18 months old so it has been about three years now.       I recently stopped to think about how our lives have changed since then and the truth is, it has.  I didn't realize the impact it had on our family as a whole.  I knew my daughter was affected by it.  I could see her face change every time she watched as one therapist entered our house and the other one left.  I watched as the jealousy would sometimes consume her. She was only 2 and a half when he was diagnosed and he was already receiving Early Intervention therapy since he was nine months old. My little girl dealt with a lot at a very young age.  She had to quickly learn that sometimes her needs came second.  It breaks my heart to admit that out loud but it is the truth. It wasn't fair for her or us but as someone recently shared with me "fair is when everyone gets what they need."  I would often wish I could replicate myself so I could give them both equal attention.  It may sound silly but having to put my son needs first in many situations was necessary but came with consequences.  Some of the consequences were good others not so much but such is life.
      In reflection of the past three years I have learned that my family is pretty amazing.  We were given these two beautiful children. The first has had something important to say since the day she was born.  The second has special needs and taught us more about life than any other peron we know. We would move heaven and earth to help them.  We came together as a family and sometimes had massive melt downs but always came out of them shining.  I recently remembered a day a few years back when I was feeling sorry for myself "Why is this happening to us" I asked my husband.  His answer was so profound and matter of fact that it is has gotten me through many difficult moments.  He said "God knew you would be able to see it and help him early on".  When the words came out of his mouth tears rolled down my face.  His words had such a powerful meaning to them.  It resonated in my soul and I knew what he said was true. 
     Today, we have great days and some not so great moments.  My daughter has come a long way and is coming to understand that her brother's brain just works differently than mine and yours. She is such an amazing little person and get ready world because she going to be someone you will want to listen to.  My husband has always been our rock of support.  He is not a man of many words but a man of just the right ones at the right time.  My son has made such great progress and continues to bring joy to us all. As for me, I am the glue that holds this wonderfully not perfect family together.  May God shine his light and guide all of our paths on this journey we call Life!!

Live your Best Life!!

    Last week a dear family friend passed away.  She was very close friend of my sister-in-law and brother. She was diagnosed with cancer over a year ago and fought a courageous battle for her life.  She was my age. A mother of twin 4 year old boys...she could be me or any other mom out there.  This hit home for me. 
      The fact that death is so definite has always been real in my life.  Pre-motherhood I never "feared" death.  It was just a fact of life, something that happens to everyone.  However, once I became a mom I had it looming in my thoughts. "I Can't Die" who will take care of my children like I do.  Who will dress them?? Who will teach my daughter how to put on make-up or what do when a boy likes her...Who would be there to advocate for my son's need or teach him how to talk to the girl he likes.  I know my husband would do all of this and more but the thought of not being there was something I didn't want to think about.  The fact is for a while it was the very thing that often crept into my thoughts.   I would share it with my husband.  I would try to fill my five year old daughter with all of this knowledge I wanted her to know.  I was doing everything in my "power" to "cure" my son's Autism.  I was consumed with getting everything in order before I died.  So here I was living my life waiting to die. I have to tell you not that's not the best way to live your life.  It was an extreme amount of pressure on my family and myself. 
     The sad part is I didn't even realize how much this consumed me until I had my "Aha" moment during a workshop I was taking.  It hit me like a ton of bricks!! What was I doing to my poor husband and kids? What was I doing to myself?  Yes, guess what I am going to die one day, but right now I am LIVING my life.  I am choosing to enjoy everything and then some!!! I am taking the pressure off and loving my life in the process. 
     My "Aha" moment came full circle when I was attending the wake of our family friend.  I was so sad and heartbroken for her family.  It was my greatest fear for myself ; dying and leaving my two children without a mom came true for someone else.  I was dreading going into the funeral home but what I found was so profound to me. When I arrived there I saw so many people waiting outside.  I realized that there was a line of people waiting to get in to pay their respects and say goodbye. Instead of feeling sad I was overcome with a feeling of  serenity. This was a testament to her life!! It took over an hour of waiting on line just to enter the room.  I just kept thinking everyone of these people were touched by her in some way.  Her life was cut way too short but look at all she did.  She must have Lived her Best Life and all those people were the proof. 
     Today I choose to wake up everyday and thank God for my life.  I choose to have faith instead of fear.  I look into the eyes of my children and know I am so blessed to be a Mom.  I am Living my Best Life by choosing to be Joyful, Loving and Grateful everyday!!

The Beginning

I remember the day I found out I was pregnant.  We had just come home from out east and I wasn't feeling "right" the whole weekend.  First thing I did is run to the bathroom because I remember I still had a pregnancy test in the vanity.  My daughter was only four months old at the time I could not believe it but to my surprise I was pregnant again!!   In retrospect everything about my son was a surprise from the very beginning.  My delivery with him was nice and easy and to be honest he was such a lovely baby.  He only cried if he was hungry.  He was always smiling and happy.  He truly  was a pleasure to be around but something in my soul felt not exactly right.  My son was about four months old when I started voicing my concerns to my husband.  The feedback I got is why are you looking for problems when there are not any.  Maybe they were right but why did I have this gnawing feeling that everything was not okay.  I would bring it up to my pediatrician but I got back" he is a boy they develop slower" and "don't compare him to you daughter".  I let it go for few months but when he was seven months old I couldn't hold back.  He was meeting his milestones but at a much slower rate.  He also did not move his body the way I felt he should.  I voiced all of my concerns to our pediatrician.  At that point he said I still don't think anything is wrong but almost to shut me up he went ahead and sent in a request to an Early Intervention agency to have him evaluated. 
 When the evaluators started their process I felt a sense of relief. My journey to help and support my child was finally underway. He got approved for occupational therapy and physical therapy.  Those two services started when he was nine months old.  I also took him to see a neurologist who told me thankfully he really didn't see anything but he was still young.  His advice was to keep up with E.I. (early intervention) and if I felt things were still not going well I should return to him within a year.  My son turned a year old and I started to advocate for him to receive speech therapy.  The E.I. people did not feel he qualified because he was so young.  However, I was vigilant in my quest to help my son.  I read every thing I could get my hands on.  I attended various workshops and spoke and asked many questions of anyone who could help me in my journey.  I never took no for an answer so when he got rejected the first time for speech I had him tested again and he finally got approved. It was at that point that we returned back to the neurologist and got our diagnosis of PDD-NOS (pervasive developmental disorder-not otherwise specified).  This basically means he is on the autistic spectrum which ranges from very low functioning to high functioning.  Shortly after receiving this diagnosis the countless hours of therapy started.  Between the ages of 18 months and 3 1/2 years old I advocated for him to receive close to 36 hours of early intervention services a week.  It was a blessing for him but definitely a process for my family.  Our lives revolved around his schedule.  I of course, had mother's guilt about my daughter.  She is only 13 months older than him and it was very hard for her to adjust to having all of these people in our home and watch them "play" with her brother.  There were times when she could be part of the therapy and other times when she could not.  The thing that helped me and our family is understanding how important this was for my son to one day be the best that he could be.  We went through our E.I. time sometimes screaming, shouting and crying but mostly in retrospect smiling, laughing and enjoying the growth of my son and our family as a whole.  We completed our journey with Early Intervention having therapist who became family. We watched my son go from zero speech to speaking in sentences.  We watched as my daughter became my son's best teacher because no one demanded more of him than she did.
My feeling are this...we all have moments in our lives when we know something isn't quite right.  It gives us that almost sick feeling, it repeats itself in your thoughts.  For me I felt it was God whispering in my ear " help your son".  I could have chose to ignore it and not do nothing. My son needed me to STAND UP and be his voice.  I am writing this for all the families who are going through a similar situation but really for us all to stop a moment.  Listen to what your thoughts are telling you.  I am so grateful everyday that I did.