Vision of Love

I've been long overdue for getting my nails done. My 8th graders are laughing at my pedicure and calling me "crunchy toes."  Everyone who ever survived their adolescence knows how critical and insistent those little 12 and 13 year olds are. I am blessed to relive my middle school years over and over again throughout the months of September thru June (sarcasm). My kids judge me as much as they judge each other, so to say the least I am at the nail salon getting my nails done so I no longer have to deal with the disdain of my students. 

I pick Jason up from the bus stop and reluctantly ask him if we could go to the nail salon so

I can get my nails done. I'm not really asking him for permission, I'm asking so he can agree to behave in the nail salon. He is a homebody and would much rather go home, but with a little convincing, he says we can go if he can pick the color of nail polish for my toes. He starts signing: yellow, orange, green, blue, and gold. Once we got there, he picked purple. 

We have my pedicure color and I'm sitting Jason on the couch with his IPad. A little girl comes over to him at the couch. She is about 3 or 4 years old. She asked me if he was getting his nails done. I laughed and said no he wasn't. As cute and sweet as this little girl was, I got that zap in my brain and tightening of my heart. Would she want to play with Jason? Will she curiously point out that he doesn't speak? Will she unintentionally make him feel different from her? I think about going over and telling her that Jason is really cool and talks with his hands, but something tells me to wait and just watch. They both begin to watch his IPad, talk about Jake (in Jake and the Neverland Pirates), and play hide and seek. I watch and my heart is softened. I am reminded and witness that little children only see goodness and love. She never asked him about his silent voice or why his fingers spoke for him. She only saw him for who he is and not his limitations. I don't know why or when we lose the vision of love, but I would like to get it back. It's my thoughts and my fears that separate my boy from everyone. My eyes need to change. My heart needs to trust, and my voice needs to be silenced. Just like the eyes of the pretty little girl, I want to see love.

Square Peg

I've been on this journey- a spiritual journey for a few months now. I've been searching for where I fit. The limited belief system that I've grown up

believing in doesn't inspire me as much as it use to and therefore, I've been in search of something more infinite, expanding, and inspiring. I haven't found it yet, but on this journey I've reconnected with a life-long friend and someone whom I respect personally and spiritually and he said something that made sense. He said something along the lines of that he doesn't believe we are supposed to "find it." "It" being religion, spirituality, or whatever one chooses to call it. If we can name it, box it up with a pretty bow, then that's not what we are searching for. As Wayne Dyer said, "if you can name the Tao, then it's not the Tao." So, this journey of mine has lost it's destination and remains just that.. a journey. Like most journeys, one doesn't know what to expect and I am amazed at what I've learned, what I've witnessed, and most of all I am so thrilled with the person who has jumped aboard on this journey with me. 

The inspiration for this piece of writing comes from something I heard from a dialogue between Esther Hicks (Abraham) and Wayne Dyer on their audible "Co-Creating at Its Best." Dyer brings up how in our generation autism is found in 1 out of every 100th child a drastic difference from 1 in every 10,000th child. Esther responds to this by saying,"Just like you [Dyer], they are coming forth to demand their freedom. They are saying that I'm going to be so different that you are not going to pound this square peg into a round hole." I am sure that this opinion can be argued and I am not saying that this is the reason why children are born with special needs, but when I heard this, a few things went through my mind.  My son is the square peg and his spirit is one of proudly being different. Being a parent of a special needs child is very challenging, demanding, and exhausting. However, I can see how my round peg- round hole being creates much of my mental anguish. My resistance to my child being a square peg creates limitations on both him and myself. He is 6 years old and is still wearing pull-ups at night. He can't speak a sentence. He isn't reading a level B book. He doesn't write clearly. He can't run in the field. He can't walk in the mall without tiring. These are all things that the round peg-round hole 6 year olds can do. Expectations  strip away the beauty of the square peg. It doesn't see the sharp straight edges that collide with each other. It doesn't see how the round pegs are curious and amazed at the sharpness of this different shape. I need to stop trying to pound my square peg into a round hole. After all, this is his journey and I choose to believe that his spirit chose to be different because he could.

Choosing Compassion

Today is always an anxiety producing day for me.  Usually, the days leading up to today are filled with fears and what-ifs.  I have tried very hard to control my thoughts and direct any negative thoughts to positive ones, but it is something that I have not mastered yet. 

Today we bring Jason for his nephrology appointment. A nephrologist is a doctor that studies the renal functions.  Jason was born with a dysplastic kidney (one kidney), and due to the neuro-genetic components of his syndrome, there is a chance he can develop kidney disease.  So, every year we get his annual bloods and get his annual ultrasound to monitor his kidney functions. 

Marianne, Shannon, and Kayla were all so kind to join me on this day of tests and results.  Jason, not to sound dramatic, is the worst patient and performs much better with an audience, and I can always use the physical help and emotional support.

We arrived at LIJ at 8:40 am for a 9:00 appointment.  We meet with the nurse who tries to get Jason’s blood pressure with no luck.  I ask her for a copy of his recent blood work and input and chart his BUN, creatinine, and WBC in my 3 in. ring binder designated for Jason’s medical records.  His blood work looked good- (10 bricks were just released from me).  His WBC was a little elevated, but most likely due to him having a cold, and his calcium was a little high, but nothing to concerning. The nurse then proceeds to tell me that he isn’t scheduled for an ultrasound.  I instantly get annoyed because I have been preparing for this day for weeks and an ultrasound is one of the important factors.  Not to sound better than anyone, but this nurse didn’t have her shit together.  She called the doctor and the secretary to try and fit us in for an ultrasound today as I explained to her that this appointment is pointless without it.  I also had to ask her for a urine cup because as part of Jason’s routine visit, they need his morning voids.  Today is not the day for ignorance. The doctor comes in and tells us that she will get us in for an ultrasound today. 

We arrive across the street from LIJ Children’s hospital at 450 Lakeville Rd building B.  This is where we are sent to get Jason’s renal ultrasound.  The radiology waiting room is packed with no seating, so we are told to sit on the other side of the waiting room.  The room was also filled with people of all ages, male and female, and all different nationalities.  As we are waiting, Jason is hanging out with the girls.  He is playing on Shannon’s tablet and walking to the water cooler to get a cup of water.  Shortly after about 30 minutes in the waiting room this tall man approaches from behind me with a thick accent, I think Russian.  He is clearly aggravated and starts speaking to me.  He starts to say that this is no place for noise that the man he is with has a brain injury and I am an idiot for allowing my son to be there making noise.  Unfortunately, I am completely shocked at the way this man is speaking to me and start laughing hysterically.  I don’t know why I started laughing, but I think it was to distract myself so I didn’t flip out on him.  Well, he didn’t like my response to his rage.  He continued to call me an “idiot…evil idiot,”  “not qualified to be a mother,” “you should have a brain tumor,” “she is stupid, that mother probably doesn’t have any education past elementary school,”  “you don’t know what it’s like to have a brain injury,”  “the kid shouldn’t be here, he is not a patient, he is a kid.”  I didn’t say much during his outburst.  He went and complained to a manager.  He told them that my son was making too much noise (completely false), I was laughing in his face (true) and he wanted us moved. Everyone in the waiting room was in shock.  One man even moved his seat next to us because he said he was ready to punch him in his face if he said something else. The manager came over and told him that she cannot make us move because we were doing nothing wrong, but she can move him to a private area.  He refused at first and then finally moved.  The manager and security officer were very apologetic.  Even a few people in the waiting room made comments that Jason was so quiet and that man was crazy.  With my nerves already out of control, I started crying.  Not typically me.  I knew the things this man said were not true, but his words pierced me like a sword and his rage penetrated my core.  I hated his words and rage, but there was something familiar in his emotions. 

Fifteen minutes later, he approached me again.  He extended his hand and said, “I am so sorry.  I can’t believe I said those things.  I am just having a really hard time.”  I extended my hand and squeezed his.  I told him I appreciate his apology and that it was ok.  His eyes were teary, his heart heavy, and his voice was shaky.  My heart softened.  He came out a second time to apologize again.  My heart broke as I could see his pain permeating from his eyes.

I am not sharing this story so people would be enraged with how this man acted.  We all know, including him that his behavior was uncalled for.  I am sharing this story for a few reasons.  Firstly, we never know what someone else is going through. This goes for both of us.  He assumed, my son was healthy and not a patient.  He assumed that I have no idea what it is like to have or care for someone with a brain condition.  He was mistakenly wrong and I assumed that this man was just crazy and irrational.  Secondly, the one thing I love about myself is my compassion and empathy and in this situation because I was emotionally exhausted myself, I didn’t respond with compassion or empathy.  My ego kicked in and I became defensive.  What if when the man was on a rampage, I ignored his hurtful words and hugged him?  What if instead of laughing I looked him in the eyes and said, “I am sorry for what you are going through.”  If we just stop for a moment, step outside our ego, we have the potential of showing compassion over anger and that is more powerful than anything else.  Choosing compassion can change the world.

The Reasons Why I Love Him...

The reasons why I love Him...

Contrary to what you believe, I believe that before we took human form our souls promised to find each other and do this life together. 

When you look at me, you see me as the person I was intended to be and not the woman I tend to identify with.

We may not have a lot in common, but the things we do out weigh the small things we don't. 

You are my anchor. I may drift, I may be pulled in other directions, but you are always anchoring me.

The main reason I am so independent and manage to do so much is because I know I have you behind the scenes.

I am so blessed to know what it feels like to be loved everyday. Even when we don't like each other, I know I am loved.

You push me past my limitations to conquer my fears. 

You make me feel safe.

You always have my back and whisper words of affirmations in my ear when I am weak.

You make me feel as if I can do anything. 

You are never shocked, overbearing, jealous, unkind, or untrusting.

When you walk through the door after working a long day, I feel whole again.

You set me straight and don't allow me to get away with being anything less than what I am supposed to be.

Your sensitive heart overflows with compassion. 

You are loyal to everyone you love. 

Even though your heart has been broken, you managed to still love fearlessly. 

After being tested, torn, broken, and lost, your resiliency pulled you through and I admire your strength.

You love our perfectly imperfect boy and see him as being nothing less than perfect. 

You would fight fire to protect us.

Hope

We were invited, for the third year in a row, to princess Gianna's birthday party. I always look forward to her birthday as I get to spend time with one of my best friends of almost 20 years and see her parents who have always played such an important roll in my life as a young girl and even as I entered motherhood. The day we found out about Jason (when I was six months pregnant), the day we were told to "strongly consider terminating our pregnancy," one of the hardest days of out lives; I was besides myself. I had no hope inside of me. I remember going out in my yard and sitting on the cold patio chair and dialing Mrs. Avino (my best friend's mom). It was sort of uncontrollable. I just called her. Mrs. Avino answered the phone and I was hysterical. I remember her telling me that she couldn't understand what I was saying because I was crying so much. Finally, I pulled myself together for a few moments to explain that we went to the doctor and they are telling us to end my pregnancy. I needed advice, I needed hope, I needed guidance, and most of all I needed someone to tell me that everything was going to be ok. I have a huge support system. I am blessed to have so many loving people in my life who are always by my side, but on July 23rd 2008, my heart dialed Mrs. Avino, an amazingly strong woman whom I admire. I will forever remember what she told me. She said, "I don't know what to tell you to do about your pregnancy, but you need to sit down with your husband and figure out what is best for you as a family and whatever the outcome is, you guys will be ok and get through it." That was it. That was all I needed. Those words pierced my soul and gave me the hope I needed to get through that night, the next week, and even today. Such wise words from a wise woman. So, as I enjoyed the day with my best friend and celebrating her daughter's 3rd birthday, I was reminded of the words that filled my soul six years ago. Angels come in all different disguises. 

When Perfect is Not Enough

 Why are people perfectionist? Why do they feel the need to have the approval of others?They are not impulsive. They do not make irrational decisions. They think everything through, planning out every scenario before choosing the best option. They hate making mistakes and do not like hurting people. I try to understand this addiction of being perfect. I guess when one is seeking approval from someone, they do nothing short of being perfect. They try to stand out, show off, and do whatever is necessary to get that, "good job," "I'm so proud of you," "you make me so happy," or "I love you." When one doesn't get that, what is left when being perfect is not enough? Is one left feeling abandoned, alone, insecure, or vulnerable? Or is one determined to persevere, stand strong in knowing that they are amazing without the approval of others, or become comfortable in their skin that other's opinions no longer matter?

I am a perfectionist! I know-it's hard to believe. Take a moment; let it settle in. 

I often hear, "you are a great person," "you have a heart of gold," "you are a great mom-you treat your son like he is a typical boy," "he is so lucky to have you." The question I ask myself as I stumble on this new phenomenon that I am a perfectionist is this:

Do I treat my son as if he is just like every other kid because I don't want him to believe he is anything less or because I need him to be like every other kid? Has my perfectionism leaked into my parenting a special needs child? Have I allowed the chains to remain linked? 

Ironically, yet thankfully, my perfectionism and controlled world abruptly changed when my son was born. My perfectionism isn't cured and my illusion of control clearly hasn't vanished however, the chains are broken. Maybe, I treat my son like he is just like every other boy because I need to or because I believe he is. Nonetheless, he is perfect. He hears me tell him every day that I love him, that he makes me so proud, and that I wouldn't change who he is for anything. He has my approval.

Having a perfectly imperfect life has allowed me to love the person I am, to feel confident and proud of the person staring back at me in the mirror, and trusting that I am the perfect mother to the perfect child.

LIJ

We arrive at LIJ Steven & Alexandra Cohen Children's Medical Center of NY. It is a familiar place as we have been coming for the past six years. I always have underlying anxiety from my fear that I will possibly get this earth shattering news about my boy. However, the doctor visit we have today is a simple one- a consultation for a sleep study. No big deal. Nonetheless, the anxiety always travels with me like my loyal companion. We walk into the waiting room and surprisingly Jason doesn't display his PTSD and excitedly goes to the computer table and plays so innocently with his dad. They use the dial and red buttons to create a wheel of colors, butterflies, and flowers. I sit across the waiting room as seating is limited. I just observe with my "new" eyes that I refer to often, ever since I became a mom of a perfectly imperfect boy. Most of the time I feel alone in this uncontrollable, consistently changing world. But unfortunately, yet fortunately, when I walked into room 160, I see myself sitting in the chair holding an infant baby girl; I see my self to the right shaking my leg as I read a book with my 10 year old son; I see myself caressing the face of my teenage son who sits so anxiously in a wheelchair. I am everyone and everyone is me. Don't mistake me, there are people in this room who have challenges and hardships bigger than I can imagine and bigger than mine, but there is an unspoken bond between us strangers. Across from me is this handsome teenage boy. He had to be 13 or 14 years old. His body is in a wheelchair, but his spirit is not bounded to the same limitations. His mother, a woman who is no longer phased by waiting rooms and doctors appointments, selfishly feeds her adolescent son a piece of whole wheat toast. During the 12-15 minutes that I am sitting and watching, this mother is calm, smiling, and even had time to say a few kind words to me. They call her son's name and off they go. He gets anxious, and she calms him. During this visit to LIJ, I am not only educated on the process of a sleep study and the difference between obstructive and central apnea, I am reminded that we are connected beyond blood and relationships, that there is more to life than just what the eye can see and the mind can understand, that people are much more than their limitations, that a simple look can touch someone's soul, and last but finally not least, we are never in "this" alone.