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.

Happy Birthday My Love

 I was always the romantic type and love fairy tales, but I never imagined that I would be so blessed to be living my own fairy tale. I love you more than I did as a teenager and am so amazed at the man you have become. There is never a day that goes by that I don't know you love us. It may be the kiss goodbye every single morning as we are sleeping, or the fact that you never hang up the phone without saying, "I love you." There is no doubt that this life has been hard. We have experienced death, tragic losses, illnesses, family issues, a perfectly imperfect child, failures, fears, and much more, but you have supported us, remained loyal, held me up, pushed me past my limitations, and remained consistent and loving. I don't know any man that could've handled our trials and tribulations with such dignity and grace. You are my rock and I am so lucky that you fell in love with me 16 years ago and asked me to be your wife. You have given me more than I ever imagined. I love you and today I celebrate you and the amazing man you are. I hope all your dreams come true. 

Halloween

On a night that brings most parents with special needs' kids a little uneasiness, I have to say, we had a wonderful night. Having a child who is minimally verbal, I was nervous that some people may think he is rude because he can't say "thank you" or feel left out when he can't recite the childhood theme song "trick or treat. Smell my feet. Give me something good to eat." Having a child with low muscle tone and who is off balance as well as having a vision impairment, my heart feared that he would not be able to keep up with the other kids as they knock on doors for candy, or he would not be able to climb the steps to reach that Kit Kat bar, or he may tire easily and not be able to walk the block with his friends, or he may not see the raised sidewalk and trip and hurt himself. Halloween, for parents with children with special needs comes with an array of worries. Contrary to my fears, Jason did just fine. He was a typical kid. He made 99% of our adventure, one minor scrape on the knee, he signed "thank you" to every person who gave him candy, but the best part of today was "let's wait for Jason," Jason, do you want me to grab you candy," "I got candy for you", and "come on Jason, I'll help you." These words came from four beautifully kind kids and their amazing parents. 

I Can See Clearly Now

I am reading Wayne Dyer's newest book called, "I Can See Clearly Now." In one of the earlier chapters, Dyer talks about the lowest points in his life and how looking back from a present vantage point he can see that those low points contributed significantly to getting him to his highest place. Today, that resonated with me. My most challenging things- anxiety and fear and Joubert Syndrome shake my core and contaminate me with panic, sorrow, and relentless fear however; without these unwanted lows, I would not be compassionate, understanding, and tolerant-all the main attributes that I so love about myself. I wouldn't have my eyes, my heart, and my soul. Maybe if I change my mindset and realize that my lows get me to my highest place...the lows aren't lows at all, they are stairs.
This is my epiphany for the day with gratitude to Wayne Dyer.

Six Years Ago

Today is a bittersweet day. Six years ago, we went to the doctor and in one breath, our hearts were broken. We were told that our baby had a rare syndrome, a cystic kidney that would never work, and I was in preterm labor at 6 months pregnant. The doctor looked at us and said, "I would strongly consider terminating this pregnancy" (which could only be done in Kansas and Colorado). In one moment our dreams came to a complete stop.  I sat outside the office trying to process what was going on. We went through some tests and went home without knowing what to do. All we knew was that we needed prayers and God knows- people prayed for us everywhere. We weren't asking for a perfect child, we were praying for guidance, what to do? What would be the best decision for our family? And we got an answer and a miracle. Six years ago, the doctor was right. Our son has only one working kidney, he has a rare syndrome, and I was in preterm labor. However, he was wrong with his solution. Science is amazing, but it only gets us so far and then God steps in. The doctor was right about some things, but his sonogram machine didn't show him that my son was going to be amazing. He wasn't able to see that my son would change my life completely and give me purpose. He was blind to not see that we would fall completely in love with a perfectly imperfect boy. A boy who continues to prove everyone wrong; a boy who has more determination and motivation than anyone I have ever met; a boy who makes my soul burst with pride; a boy who amazes me and touches everyone's heart who meets him. The doctor couldn't tell me that the man I married would become my strength, the person I could trust and rely on for everything. The blood tests would never have shown that the man who suffered so much loss already would be an amazing dad and fight for our son before he was born. No tests could've told us that we have a marriage and family built on strength and faith and nothing can knock us down. No diagnosis will ever compare to the love, joy, and peace I have as I lay with the man I chose to spend my life with and the little man God has chosen for us. We are abundantly blessed, and today I celebrate the best decision we ever made- FAITH!

Soccer

Today Jason started playing soccer on the "Side Kicks" team in Oceanside. Yesterday, we went and bought him Adidas sneakers to fit over his braces, long soccer socks, and a number three yellow soccer ball.  
We arrive at the soccer field today, and as we step foot on the field fear, disappointment, and heartache pierced me.  A day, I was so excited for was corrupted by my expectations and emotions. We pushed Jason on the field, prying him from my leg, and bribing him with cookies, grapes, and ice cream in order for him to attempt to play this game with 13 other kids.  It became obviously clear that he was different.  Holding back tears of sadness and fear for what is to come in the future for my son as he enters this new stage in his life where children and adults will continue to see him as being different due to his lack of coordination and balance and his silenced voice. I became a woman filled with thoughts that I was not comfortable with.  So, I stopped.  I stopped the racing thoughts of deterioration. I stopped the distorted vision I was observing my son through, and I stopped.  I stood in front of my boy and the man I love and felt proud and blessed.  I realized that I am blessed because my son had both of his parents on the field playing with him.  He has a mom and a dad that both cheer for him.  It became clear that I was seeing this picture of my life with the wrong eyes.  Almost five years ago, the idea of my son playing soccer wasn't even something we ever imagined would or could happen.  He may not run as fast as the other kids.  He may not be able to dribble the soccer ball, but he can walk, he can run, and he is on the “Side Kicks” soccer team.  Once I understood that it wasn't about my expectations, I saw the miracle that I have been blessed with for four years now.

On Friday Morning

Every Friday morning, I take Jason in his red wagon and we walk to Dunkin Donuts to get him three munchkins. Every Friday morning at Dunkin Donuts, people always look at Jason. They see a boy using sign language, wearing braces on his legs, and not able to walk yet. I always was defensive inside, because I didn't want people to look and pity him or me. Today, I realized something. One woman asked kindly about his braces and wished me luck; another woman commented on how adorable Jason is, and then there was this man. He was mesmerized by Jason. He watched him as he ate his chocolate glazed doughnut, he walked passed him and asked him for a high-five, and couldn't leave without touching him once more. He was a warm man; a kind man. My realization was this... people aren't pitying my son; they aren't feeling sorry for him; they are humbled by him. My son reminds them of strength, determination, courage, and perseverance. My son illuminates people's soul.