Slideshow Widget

Archive for 2015

6 Things I Wish I’d Known About Recovering From Emotional Trauma

Tuesday, December 1, 2015

As we pass our daughter’s November birthday, we also pass the anniversary of her near-death experience. The events which followed that experience overshadowed what was supposed to be a joyous time for me and my husband, leaving an everlasting mark on our lives.  For the last three years, the holiday season has served as a time to reflect on all the events, good and bad, which have shaped me into the parent I am today.  With each year that passes my memory of some details fade.   I suppose this is one gift of time fleeting away.   However, there is one wish that remains constant and intensifies with time.  I wish someone would have talked to me about recovering from emotional trauma.  I wish someone would have prepared me for what lied ahead.  As our daughter moved through a complicated hospital stay filled with life support equipment, convoluted diagnoses and major surgery, I knew recovery was going to be a process.  What I didn’t know is that her physical recovery was just one aspect of this new course our lives were on.  What I didn’t know is that our progress was going to be painstakingly slow.

Just like anyone who has been blindsided with an intense and life altering event, it was going to take some time for my husband and I to recover.  The initial ordeal was quick, intense and traumatic.  My awareness and recollections of this disaster still, at times, leave me feeling very alone.  But while this doesn’t really surprise me, the bombshell of experiencing an identity crisis was a shock. And one question still lingers, how much longer is this recovery process going to take?

I was caught off guard.  Of course the events we experienced were an unexpected shock. There was no time for postpartum recovery, bonding or even a moment to truly experience being a new mother again.  I was caught off guard by how unprepared I was, after all I spent months preparing for this birth. Although I knew there was nothing I could have done to prevent this from happening, I was unexpectedly hit by self-interrogating questions of what I could have done differently.  I could have never anticipated the feeling of powerlessness and loss of control I felt.  Although I was in an acutely fragile state, the element that took me by surprise was my strength.  I unexpectedly found the relentless, strong-willed, determined and tenacious person whom I had tucked away only a few years prior.  By rediscovering the very person, whom many had considered flawed, I tapped into an unshakable strength I never knew existed within myself. 

I needed time for reflection. Once we arrived back home, I found myself feeling lousy.  I was filled with an awful level of confusion.  I was met with an unforeseen feeling of emotional numbness and felt spiritually disjointed.  I quietly experienced flashbacks and uncomfortable moments of emotions flooding my mind.  I didn’t expect to experience these things with such intensity.  Had I known that what I was going through was normal and productive, would I have fought it so hard?  By allowing myself ample time to reflect, I stumbled upon acceptance.  I never predicted that by allowing myself to look back on our experiences I would one day make sense of everything and finally feel comfortable enough to stop asking the question, “Why?”.

I had to allow myself to grieve.  This life altering event was abounding in negative experiences.  But someone hit the delete button on some good moments and milestones that I would’ve otherwise experienced had this not happened.  This was a lot to digest and I never realized how much time I would need to grieve. There was not one person around that was ever going to give me permission to be an emotional mess.  I didn’t immediately catch on to the fact that it was ok to feel and experience my emotions; the depression, fear, distress and outrage.   It was only when I felt the intense longing to hear someone tell me it was ok to fall apart that I finally give myself permission to do so. It was then that I accepted my emotions and began to move through the pain of loss. It was also then that I understood this was simply another step toward finding my new normal.  Although this process has, at times, presented itself as unwanted change, in its reveal it has been a transformation in the way I understand and exist in the world.  I was unaware that three years later I would still long for my postpartum time back and would still be yearning to have another chance at bonding with my infant.  Despite these feelings, I’ve found new meaning in my present and future.

I would see how other people cope with crisis.  I wish I could have anticipated the challenges during the first year after her surgery. As the complexity of our daughter’s care grew, so did the list of expectations of loved ones.  During a time when we were struggling to hold ourselves together emotionally, pressure to meet the needs of family set in. A certain level of awkwardness existed when I needed to talk about our daughter’s complexity of care.  The few people I chose to talk to offered only blank stares and emotional vacancy.   I instantly felt other’s need for me to repress and disassociate myself from the trauma. I quickly recognized that this wasn’t personal, but was simply how some cope with crisis and I wasn’t judging.  While these coping mechanisms might be the appropriate for them, they were unsuitable for me.  I could have never predicted the courage it would take to turn down a preferred way of coping and wrestle this experience in my own way, even if it meant being considered an outsider and being rejected.  Fair-weathers came and went and, as fate would have it, many others arrived to indulge with gentleness, compassion and grace. I’ve enjoy many of our oldest friends rising to the occasion and providing some of the greatest support and have grown to accept this as an opportunity to create new relationships with others who’ve had similar experiences.

I needed to take one step at a time.  Sometimes I wonder how so much time has passed and how little headway I’ve made in this process, but then I look at where I was 2 years ago. I wish someone would have told me that the first year was about survival.  I wish I would have had a flowchart exhibiting step one as: “Finding Safety and Security”.  I didn’t realize at the onset, but our lives were unexpectedly undergoing a drastic restructure.  Everything that was once familiar to me swiftly required reevaluation and readjusting.  Jobs, family, friends, routine, money, how I saw myself; like it or not, I was getting a total overhaul.  I’ve come to realize that this overhaul is leading me to finding a new meaning in this life. This reformation has changed me.  I’ve become a better wife and mother as result of this journey.  I’ve been granted a new and better understanding of who I am. 

I would socially reconnect when I was ready.   We arrived home exhausted; mentally, emotionally and physically enervated.  I felt a craving to make up for lost time with my child who was barricaded behind a bedrail for two months. I needed to spend time looking at her fingers and toes, smelling her scent, lying with her on my bare skin.  I had to devote time to establishing a new routine consisting of therapies and medical appointments.  I had no choice but to acknowledge and accept my need to experience the transition period I was immersed in before I could begin to truly reconnect with others.   It might have taken almost three years, but when the time was right, I didn’t feel coerced or manipulated.  It felt good to enjoy time with the people who have supported me. 

This story has been featured on The Mighty: You can read it here.

Dedicated to:
All my nursing friends (you know who you are)
Thank you for never giving up on me. 
My sisters, Daria, Radine and Michele
I couldn't do anything without your unwavering support.
My cousins: Elizabeth and Stacie
My beautiful and oldest friends from high school 
who have remained by my side.  You know who you are.

Bringing Up Betty - True Tales of Special Needs Parenting.

Tuesday, November 3, 2015

Ever wonder what our day looks like.  You can read about it at Bringing Up Betty.

An Angel's Reflection

Thursday, October 15, 2015

A walk in which I chose to hide,
I found a reflection standing waterside.
A supernatural being, so blessed,
usually only seen in my dreams during rest.

A messenger, of sorts, from heaven above,
a celestial being representing true love.
A guardian protecting, magnificent wings
a child, her laughter, the pleasure she brings.

Before she is born, the angel’s message is clear,
She says, “baby comes first in your moments of fear.
Do not despair you’ll know what to do
when your child stops breathing, falls limp and turns blue.
I’ll be by your side in quite different form,
a paramedic in shorts reassuring and warm.

At the hospital be mindful and stay aware,
I’ll help the doctor intubate with care.
When stroke and seizure begin to prey,
the nurse will notice with no delay.
She’ll talk to you in a warm and heartfelt way.
She knows how you feel, she has seen this before.
I’ll stand by baby’s bed as you cry out once more.

Days will pass, life support still stands.
Ease will be felt when Angel Flight lands.
When the baby lifts off with you by her side,
I’ll stay by your husband as his emotions collide.
Now that the distance feels greater than the continental divide,
Please know I’ll have, once again, you both side by side.

 The morning will come, her surgery quite near,
you’ll sit long and wait in enormous fear.
I’ll be in the OR, the surgeon I’ll guide,
He’ll do a good job and walk out with great pride.
‘Your baby, she made it.’ He’ll say with slight grin,
‘Go see her at once, I can tell you’re worn thin.’

Going forward she’ll need immense guidance and support.
With dependence on therapy,
on sleep you’ll run short.
A new normal you’ll meet,
often running for retreat,
bowing down countless times,
for charity of mercy’s seat.

 But please heed my message as I say one last thing,
for it’s not only comfort and love that I bring.
The truth you shall see as your tears are now dry.
His rightness reveals much more to your eye.
The reflection you see as you hide by the water,
was not that of mine, but of God’s precious daughter.

He knew you were strong and would handle the struggle.
He knew you were brave and could wrestle the trouble.
The wings that you wear in the water’s reflection,
resemble your growth and his perfect selection.
For you are the only angel fit for the art,
of raising this baby with a strong loving heart.

  Dedicated to my dear friend Ms. Patricia LeFiles.
Your words of wisdom constantly provide me comfort. 
Thank you for your love. 

What I Gained By Losing

Wednesday, September 30, 2015

The details of my divorce are neither important, nor interesting.  We grew apart. It happens to the best of us.  Some marriages last, mine fell apart. 

Once we separated, I did my best to ensure I provided for my children. I thought we could move through this new stage in a civil manner.  It didn’t seem like too much to expect, I mean, many families survive divorce with great success. 

My divorce was anything but peaceful and with my ex and me living in different states, child custody was complicated. All hopes of civility quickly went out the window. I remember a call I received from my mom after seeing my girls off for a homebound flight.  She said the kids boarded the plane upset as tears and pleads for them to stay were laid on pretty thick.  The visual that I was left with was disturbing, yet I wasn’t surprised. This was precisely the stuff I couldn’t stomach anymore and a big part of me was thankful I hadn’t seen it for myself.   

But it didn’t stop there. Tears and guilt trips quickly escalated into unthinkable conversations and inappropriate situations; which turned into a heart wrenching struggle to save my relationship with my children. There was no choice but for them to side with people who had invested so much of themselves into destroying my relationship with my children.  Their very survival depended on appeasing the people in front of them, regardless of the consequences.  I was distraught over the thought of losing my children. My worst nightmare had come alive, I found myself in the center of parental alienation.

It was a complete mess. 

But never was I as low as the day I sat in the airport waiting for my younger daughter’s flight to arrive only to receive a text message stating that she wouldn’t be getting on the plane and wasn’t coming for scheduled visitation.

I was crushed beyond belief.

The longest walk of my life was that day from airside to short term parking.  I sat in my car and cried myself through feelings of anger, sadness, embarrassment, guilt, shame and confusion.  Why did they hate me so much?  Why couldn’t they see the worth of my relationship with the children? How could they be so wrapped up in their own needs and emotions that they’d lose sight of what was good for the kids? How do you teach a child to hate a parent who loves her children so much?  I was never fully prepared to deal with this stuff.

I’m not sure how long I sat in my car, but it was then that my recovery from this horrendous nightmare began.  There were a few things that I knew for sure.  A child’s hatred for a parent isn’t a natural emotion, it’s taught.  Also, this situation was never about me or who I was, nor was it ever about what I did or didn’t do.  

It was time for me to make a decision that would take my children out of the middle.  It was a decision that wasn’t best for me, but best for the girls.  I abandoned all litigation, as it proved itself to be fruitless.  I detached from the struggle. Going forward, I had to be ok with the fact that things weren’t going smoothly.  I explained to my girls that the friction and disharmony wasn’t good for them.  I told them I had to back off so they could move forward peacefully.  I told them I was fighting a battle that no one was going to win.  I left our conversation by letting them know that the only thing I had left to offer was my unconditional love. Our home and my heart would always be opened and a safe place for them to escape to. My hope was that they understood there wasn't a thing they could say or do to make me stop loving them. It was frightening to be in such unpredictable and unstable circumstances, but I wasn’t going to internalize this and allow it to consume me.

I drew strength from my mother’s words. “You need to feel sorry for them.  They’re in a very lonely place, dear.” The moment I chose to isolate and detach from the events and circumstances of my divorce, is the moment I forgave myself and the people who threatened my core sense of self-worth.  I knew, no matter what was said, history could never be erased. From this relationship, I gave birth to two beautiful children and I was their mom.  I learned that although my relationship with my oldest, at best, was fragile, recovery is possible.  I stood proud of my youngest for not allowing our relationship to be defined by divorce. From losing myself in a sickening situation full of negative emotions, I gained back my self-esteem and a solid essence of who I was.  I came out with a deeper rooted set of values and greater integrity.  I found my dignity. I had finally gained an understanding of who I was, and I liked her. 

For more information on parental alienation or additional resources on PA, please visit PASG.  If you feel you are a victim of PA, please contact a psychologist, psychiatrist or other appropriate specialist in your area for help.    

A Not So Typical Letter To My High School Grad

Saturday, September 19, 2015

Dear Sweetheart,
I had a hard time figuring out what to say in this letter. I didn’t want it to be the typical “I love you and am very proud of you” letter most parents may write to their high school graduate. Of course, I love you and I’m proud of you. These are things that I tell you on a regular basis. I imagine many parents in my shoes would tell their child it seems like just yesterday they were little babies. I assume many might say they want to turn back the clocks to relive all those lost years. I’m sure most parents are able to list off numerous memories from their graduate’s childhood. But this isn’t the case for us.
Divorce changed many things in our life. Nothing from our past seems like just yesterday. It feels like centuries have passed since I was able to hold you or sit to watch a movie with you. It feels like a lifetime has passed since we were able to truly enjoy each other’s company. I’d prefer to look toward the future rather than turn back clocks, as our past contains some pretty painful moments, lost hopes and vanished dreams. We’ve sustained emotional scars, some of which we are still trying to heal. Frequently being away from each other has certainly changed many aspects of our relationship. Over the years, many of your needs went unmet and you lost sense of security. Your stability, at times, was replaced with the feeling of being abandoned by both of your parents. It’s been a long, hard road for you.
Obviously, being a child of divorce hasn’t been easy. However, because of your life experiences, you have character, you’re strong, and you’ve learned valuable lessons. You’ve proven yourself to be a person of integrity and have always been ready to accept the challenge of responsibility. You haven't allowed our family history to define you. You haven't allowed divorce to define our relationship.
By graduating high school with honorable grades, you’ve defeated many odds. You’ve made it to a place where you have earned your freedom. But, with freedom comes more responsibility…..a lot more responsibility. The most important part of your life is yet to come. This is a confusing time of old doors closing and new doors opening. You’ve gotten it all right so far. Since you’ve handled responsibility so gracefully, here are eight more things to be responsible for.

1. Your Success
Success isn’t measured in cars or money.  It’s most certainly not measured by what I, your father or your future spouse think of you.  Success is measured by the type of person you are and how you choose to live your life.  So be an honest person, live your life honestly and save your money.

2. Your Work Ethic
Take responsibility by ensuring that you have a good work ethic.  Always put your heart into what you set out to do.  Hold your morals high.  Spend time building trusting relationships.  Take personal responsibility for your mistakes. Finally, always arrive to your job and meetings 5 minutes early.

3. How You Treat Yourself
Treat yourself with respect. Others will follow your example. The world isn’t going to respect you unless you show them that you deserve it.

4. How You Treat Others
Ephesians 4:32 says be kind to one another, tenderhearted, forgiving one another as you have been forgiven.  Be a good listener. Hear what others are trying to tell you.  In conversation, hesitate to respond unless your response is kind and helpful.  Treat others with respect.

5. Never take the easy way out
Know that you will have a difficult time amounting to anything and have an even harder time making yourself proud if you look for the easy way out.  Instead take responsibility for yourself, your actions, and the energy you put out to the world. Be committed to doing your best work.  Push yourself to your limits and outside your comfort zone.  You’ll feel accomplished and be happy that you didn’t settle.

6. Your Health
Eat good food.  Drink lots of water and take your vitamins.  Commit to a daily exercise regimen for stress management. Read books; a lot of them.  Consider them healthy food for your brain. Sleep when you are tired.  Take time to connect with people.  Make a schedule so you don’t find yourself cramming for test or rushing to working. 

7. Your relationships
Be giving of yourself as God has given himself to you.  Relationships are not 50/50.  I consider this bad math.  Good, solid relationships are not built on give and take.  Relationships are about giving 100% of you (yourself) and expecting nothing in return. 

8. Don’t Take Life Too Seriously
It’s your responsibility to lighten up.  Allow yourself to laugh. Life isn’t about totally surrendering, nor is it about retaining complete control.  It’s about being in between, having a healthy balance.  Remember, especially during the tough times, that everything is temporary. Realize that emotions will come and go, acknowledge them and allow them to pass.  Allow yourself and others to just be human. Remember YOU choose your attitude to the circumstances YOU create in your life.

Be proud of yourself, not because I’m proud of you, but because you did this all on your own.  You chose to be your best.  I love you so much.



To The Lady Behind Me in the Airport Security Line

Friday, September 11, 2015

I smiled at you when I saw you behind me.  We stood near each other in the security line at the airport.  I had just finished loading the last of three bins onto the x-ray belt when I looked up to find you scornfully staring at my child. The blistering look that you gave me didn’t go unnoticed either.  For a second, I thought maybe you were just having a bad day, but then I overheard the comments you made to your friend. I heard you tell her that I’m a lazy parent.  I also heard you say that people, such as me, shouldn’t have children.  I heard you ramble off a list of things you would do differently. I overheard your entire conversation.

Based off of what you saw, I don’t blame you for having said what you did.  I understand where you were coming from.  It’s nice to know that you were feeling protective over my child.  After all, you saw a cute two year old brunette with big brown eyes, jumping, laughing and having fun with her tether strapped onto her back.  I agree with you, children don’t belong on leashes and I often feel as if I’m not good enough to raise such a beautiful child.   Not that you would have cared, but I wish that I could have shared with you a few things which were not so obvious at that moment.  I wish I could have talked to you about what you couldn’t see. 

The little girl you saw in the airport isn’t your typical child.  I know she looks very normal on the outside, but on the inside she’s very special.  What you didn’t see is that my child is partially blind.  As a newborn, she suffered a stroke. Her brain injury has caused her to have a very difficult time in public places.  What wasn’t apparent is that the noise in public places, such as an airport, can be very distressing and overwhelming for her, often causing her to run away.   What wasn’t so obvious is that she has difficulty seeing and listening at the same time, not because she is unruly, but because she can’t divide her attention between sight and sound.  What you didn’t see in that moment, is that she has difficulty walking, often tripping and falling down. What I wanted to tell you is that I tried your stroller idea, but she started to lose muscle tone from lack of exercise.  I really wanted to talk about the daily struggle to keep her safe, but before I could address your concerns, you walked off to catch your flight.

You see, the day I left our developmental pediatrician’s office to buy my daughter’s new accessory, I knew that you and I would meet one day.  I knew what you thought of me long before I heard your spoken words.  I knew that you would talk about me and disagree with my parenting choices.  What I didn’t know is how bad your words would hurt.  I didn’t know something as silly as an opinion would pierce through my heart every time I secured my child into her tether.

I still think about you.  But now, when I recall our encounter, I am filled with gratefulness.  Thank you for causing me to recognize how strong of a woman I am.  Thank you for shining a light on the lengths I will go to ensure my child’s safety, even if it means taking one for the team.  Thank you for helping me understanding that in moments of pain, I can find happiness in my daughter’s smile and sound of her laughter just as I did that day in the line at security.  I hope you find your happiness too.

According to the AOTA Cortical Visual Impariment (a/k/a neurological visual impairment) is the leading cause of blindness in children.  To learn more about neurological vision impairment visit or watch Christine Roman discuss the evaluation of functional vision in children with CVI.  You can also visit American Printing House for the Blind or read any of the publications listed by American Foundation for the Blind

Great Game Time Dish

Wednesday, September 9, 2015

As summer comes to a close and fall dawns upon us, so does football season.  Since Emma was born, I haven’t had time to sit with my husband and watch a game in its entirety.  The conditions have to be just right for me to even want to sit and watch a game these days.  However, nothing can keep me out of the kitchen, and not even Emma can stop me from cooking great food. 

I love putting a different spin on the foods I prepare for my family.  While deviled eggs are always a popular item for parties, I wanted to try something a bit different. There are many different spins on this dish out there, this is mine.  I've turned my "I don't like pasta salad" kids around with this dish. If you’re a fan of deviled eggs, this recipe is sure to be a crowd pleaser at any get together. 

Deviled Egg Pasta Salad

·         1 Box of Rotini or Penne pasta
·         6 - 7 hardboiled eggs, depending on your taste
·         2 1/3 cups lite mayonnaise
·         4 tablespoons mustard
·         ½ cup sweet relish
·         1/3  cup sweet pickle juice
·         ½ red pepper diced
·         ½ green pepper diced
·         2 ribs celery diced
·         ½ small red onion diced
·         1 tablespoon chives chopped
·         Paprika, salt and pepper to taste

Prepare the pasta according to box instructions.  While preparing pasta, boil eggs for 10 minutes or until fully cooked.  Combine mayo, mustard, chives, relish, sweet pickle juice, salt, and pepper in bowl and whisk until fully mixed. Drain pasta and place into large bowl.  Set pasta aside to cool.  Chop eggs into bite size pieces in separate bowl.  Once pasta has cooled, add red pepper, green pepper, celery, and onion. Pour whisked mixture onto pasta and mix together. Fold eggs into salad and place in fridge until completely cool. Finally, top with paprika and serve as a side dish to your favorite meal.

The thing that I really like about this dish is that it isn’t “one size fits all.”  Not everyone enjoys the sweetness of traditional deviled eggs.  If this is the case, have fun with this dish, add the ingredients that you would normally put into your deviled eggs and exclude the relish and sweet pickle juice.  Either way, this pasta salad is one that everybody is sure to enjoy.  

Surrendering Expectations for New Possibilities

Monday, August 31, 2015

As a nurse, I'd seen it a number of times before.  I considered myself a very good resource for families to lean on for comfort, reliable information and timely updates.  Blood draws, lab results, several IV pumps going at once, new lines and tubes were all part of a day's work for me.  A tear wiped here, a hand held there, a hug given and at the end of the day I hoped I’d made a difference in someone’s life.

The Day Everything Changed

Paramedics escorted her into the room while ER staff asked us questions about the events which took place during the few hours we spent at home after discharge from the hospital.  I quickly took the opportunity to inform them that we would not be going to a waiting room; rather we wished to be by our daughter's side. My husband and I stood only six feet from the bed where she laid, yet it felt like we were six hundred miles apart.  I couldn't hold her, I couldn't touch her and now I couldn't see her because so many people surrounded her.  She wasn't in a bed any more, she laid in a stretcher. She wasn't swaddled in cute little blankets; she was exposed and entangled in tubes and lines. This medical environment that I was so familiar and comfortable with just 24 hours earlier suddenly became foreign, complicated and frightening to me. She was being examined in every way one could humanly imagine at only 72 hours old.  She was literally being pulled further and further away from me and the thought of this caused a huge wave of unbearable anxiety. 

I listened as lab results and orders were shouted from one person to another. All the numbers I heard being reported back to the physicians were within normal limits. Then it started, abnormal findings communicated and physician's orders given in response. By the way they spoke to each other; I could tell that they had forgotten we were in the room. Her temperature was low, so someone was sent to gather warm blankets. Finally, a nurse called out the result that would make my heart drop into my stomach.  Her blood glucose was 10.  I remember a feeling of intense distress consuming me, as I was well aware that normal glucose ranges approximately 60 to 100. But what concerned me the most was her lack of response to everything going on, the needle sticks, the face masks, and the people shouting.  She wasn't crying, she wasn't upset, she wasn't fighting.  All I could do was pray to hear the sound of her cry. 

It was then, that my husband asked me what was happening. He'd never seen anything like this before.  Until now, he was sheltered from what I was so comfortable seeing at work.  If I was frightened, I couldn't imagine what was going through his mind. I knew as much as he did and I couldn't offer any answers his questions.  I wasn't able to provide him, the one person whom I cared so much for, the type of comfort that I was able to provide to so many families during my years of nursing.  I was paralyzed. We stood together in an unfamiliar environment, surrounded by complicated and frightening technology in an awful state of confusion and no one was able to offer us any answers. 

It was at that moment, I released all the hopes and dreams which I had held onto for so long.  I was now holding on to a single thought.  I had to believe that she would prove herself to be strong enough to pull herself through this turmoil. There was no other option for her.  She had to show what she was made of at the tender age of 3 days old.  It was at this moment, I realized, that I had no choices, no control, and no say-so in anything that mattered.  I knew that this was going to leave its mark on us for a long time.

Looking back, I realize there was a lesson to learn that afternoon.  You see, I went into my pregnancy with some well-crafted expectations. After all, I had gone through pregnancy and child birth before.  I had planned out how everything was going to be handled and envisioned how perfectly everything was going to go. I didn't leave room for life to happen. I didn’t leave room for all the possibilities.   I, being human, thought I had everything under control and all the details figured out.  I couldn't have been more wrong.

We all do this from time to time. All too often, we prove ourselves to be individuals focused on hammering our expectations into everything and everyone.  We walk around strapped into the strong belief that someone should achieve a certain goal or that a certain something needs to happen.  By being so rigid in our thinking, we spend our time uptight over outcomes and overly concerned about how other people are going to respond to us.  Our expectations end up confining us to the uncertainties of tomorrow, trapping us by defining how we experience our lives, and feeding into our deepest fears and anxieties. 

The lesson that day was loud and clear.  I was not in control, I never was. There was a greater force at work and it was time for me to be open-minded.   I needed to stop looking at my life through the lens of expectations and choose to live for the possibilities that life was offering.  I needed to free myself from what other people wanted out of me, let go of the “I shoulds”, and stop being a people pleaser.  I needed to free myself by focusing on what was best for me, my children, and husband rather than attempting to do what others expected.   To be the parent this child deserved, I needed to let a new level of compassion take its place in my in my heart. This was going to happen only if I released my expectations.  Going forward, it was going to be my job to keep my heart open to new possibilities and look for opportunities on this new journey we were on.  As Nicholas Sparks wrote in The Notebook, “It's the possibility that keeps me going, not the guarantee.” Things are never going to be exactly how I had hoped and dreamed, but I have the child I had always dreamed of and because of her anything is possible. 

20 Things To Remember When Helping A Special Needs Family

Wednesday, August 19, 2015

After receiving the “all clear” from our prenatal genetic test, my husband and I did not expect to be in the company of over ten million other families raising a child or children with special needs.  Shortly after birth, our daughter was found to have two genetic disorders. She spent almost two months in hospitals and had 85% of her pancreas removed at three weeks old. 

Every day, since Emma’s surgery, we have experienced astounding highs and unendurable lows. She’s partially blind, struggles with sensory integration issues and has developmental challenges to overcome.   Emma is also at an exceptionally high risk for cancer, so she is tested every six weeks with blood tests and ultrasounds.  We constantly worry about her, continuously encounter people who have a difficult time understanding our family and we are always worried about the financial ramifications, as this journey comes with a very high price tag.     

Once we joined support groups and exchanged experiences with other parents, it was obvious that our concerns, feelings and emotions were surprisingly similar to theirs.  I quickly realized that this journey rarely involves the experience of a singular loss, but a series of losses over time.  It was comforting that we all shared the common goal of setting our children up for the most successful future possible.  However, that comfort has, at times, been over shadowed by the lack of understanding that many have for special needs families. The snarky remarks, sarcastic comments and hateful disputes that I and my husband have dealt with is astounding, yet we found that many special needs families experience similar situations.  The following is a list of things we feel others need to be conscious of and recommendations on how to possibly help your friends or loved one(s). It’s rooted in our own experiences, as well as, experiences of our friends who are courageous parents of special needs children.   

1.       Hop on for the roller coaster ride or get out of line.
You've stepped into a very messy and chaotic situation.  It’s likely that feelings and emotions are all over the place and there are going to be good and bad moments. Please remember that our families live second to second, or day to day, and this is normal. Support and understanding is what we need.  Active listening and lots of hugs are always welcomed.

2.       Lose all your expectations.
We are doing our best while under a tremendous amount of pressure.  There are many medical professionals micromanaging the care of our child. You may not agree with the choices we make, but you need to understand that these choices are best for our family.  Our priority is our child and we simply can’t live up to your expectations.  We are raw and sensitive and this is normal.  Telling your friend or family member that their sensitivity is a character flaw probably isn’t a therapeutic and supportive thing to say and may cost you your relationship.  Reminding us that we need to “take baby steps” only communicates that you have goals which you expect us to meet.  We have our own set of goals and plan to reach them in our time.  We need love and understanding. We need you to accept us where we are at this moment. 

3.       As much as you think you understand, you really don't. 
Although we all experience difficult situations, disappointments and letdowns, one never really knows how another may handle those experiences.  We all come to the table with different morals, values, and religious experiences. Our emotional states vary and our social influences may be quite different.  It's these differences that affect our perception of a situation. Assuming that you know what we are experiencing in these tough times leads to judgment. You might be able to empathize, but please know you truly have no idea.

4.       Our losses are bigger than you know.
When you look at us on the surface, its easy to assume that you’re aware of all our losses.  We promise it goes much deeper than you know.  We are suffering losses on many levels. The pain experienced with each loss is incomprehensible. We have lost bonding time, the opportunity to breastfeed, and the dream of how our child was going to grow up. We've lost the dream of how our family was to function and our financial security, as there is a hefty price tag on medical equipment, doctors’ appointments and therapy.  Please allow us ample time to get through this. It’s certainly not going to happen overnight and it's probably not going to happen within months. As a matter of fact, it may take years to tread through this complicated recovery process. We need patience and compassion. 

5.       Please be kind and helpful in what you say.
We understand that you mean well and may even feel helpless, but if you can't find anything nice or useful to say, silence is golden.  Please don't tell us that God only gives us what we can handle or everything happens for a reason.  These sayings serve no purpose, undermine our right to grieve and are simply not true. Please don't say to us that you don't know how we do it or that you could never tolerate our lifestyle. We didn't choose this for ourselves.  If we could have it different, we would.  Statements like this are judgmental and hurtful. Please don't ask us when our child is going to grow out of their disease because this simply isn't possible. This statement communicates that you're tired of dealing with our situation. If this is the case, its ok, we understand if you need to gently excuse yourself. Please refrain from telling us our child is fine. It may look that way to you, but they aren't fine.  Chances are we aren't discussing the intimate medical details with you.  Finally, don't tell us it could be worse or at least our child doesn't have “x” disease.  We understand this might be your way of looking on the bright side of things, but it's downright insensitive. For us, it couldn't be much worse.

6.       Just because you don't see it doesn't mean it's not happening.
You may not see it, but we are up at all hours checking blood sugars, giving insulin, changing IV bags, unclogging feeding tubes or cleaning vent equipment.  We watch our child's cardiac monitor and are consumed with counting their every breath.  We spend our time on the phone gathering test results and making follow up appointments.  We are constantly trading one therapist for another in hopes that we are getting our children the help they need.  If you don't hear us talking about our child’s struggles, we're keeping the conversation light. 

7.       We probably need time to ourselves.
Many of us spent a significant time in the hospital with our little ones.  Most of us have every kind of medical specialist, therapist and social worker standing between us and our child. Our days are filled with doctors’ appointments, therapy, lab work and tests.  We are trying to be as social as possible, but we really need time alone. The desire to have time alone is a very normal need that should be fulfilled. We lost our bonding time and are never going to get that back. Please remember the priority is our child and our immediate family unit, so we aren't going to make all of your get-togethers or functions. We are mentally and emotionally exhausted. Please know it's nothing personal. Spreading ourselves too thin isn’t the right approach. 

8.       If we haven't asked for it, we don't need your advice. We need your support and love.
There are numerous doctors, specialists, therapists and social workers involved in micromanaging the care of our child.  The last thing we need is unsolicited parenting advice or rude comments. Know with confidence that we are taking very good care of our little ones and we know what’s best for our children. Additionally, the immediate period after arriving home from the hospital probably isn’t the right time to advise your friend or family member that they should be taking breaks from their child. Approaching this time with love, understanding and unconditional support is absolutely necessary.

9.       Support our religious beliefs or lack thereof. 
It's neither a good time to convert us to your religion, nor is it a good time to preach. We need unconditional love and support.  It's a good time to practice your beliefs.  Let everything you say and do be good and helpful. Provide us with encouragement. Know that your good deeds aren't going unnoticed and we are grateful.

10.   We aren't worried about the things you worry about.
Typical parents concern themselves with their child giving up items such as bottles and pacifiers. They may spend a significant amount of time thinking about the right school or play program. We aren't concerned about these things as much as we are concerned about developmental delays, gross and fine motor skills, blood sugars, cardiac, respiratory or skin issues.  The bottle and pacifier aren't going to negatively impact our child's adulthood.  Our children need to gain neurologic and emotional maturity before they can handle being in a classroom setting. We, as their parents, are in the best position to decide when they are appropriate and equipped to attend school.  We would appreciate your support in our decisions.

11.   Even if it's managed well by medication, it's still serious.
So your friend or family member’s child appears to be a normal child to you. In your mind their disease process is well managed by medication or has been cured by surgery.  You ask what all the fuss is about and question your friends’ sanity. I mean after all, they seem stable, right?  Wrong.  Chances are, without medication, the child could die.  Surgery or medication doesn’t mean “normal” for the parent whose child is faced with developmental delays, possible seizures, unstable blood sugars or an uncertain future because of the probability of cancer or another devastating disease.  It's serious.  It always has been and always will be.

12.   Just because you're over it doesn't mean it's over.
Your friend or family member’s child has made it out of the hospital after spending weeks in the ICU.  It's all downhill from here, right?  Wrong.  It’s been 6 months since they've been discharged so it's time to get back to a normal life, right? Wrong again.  We understand you're over it.  We understand your need to get on with life.  We welcome you to do so and promise we are ok with that.  However, it's not over for us.  Please don’t expect us to get over it when you've decided you're done dealing with it.  We are now dealing with the aftermath and our hands are full. Many of us are suffering financially and this is a stress that can tear the strongest family down to its core.  Just be kind to us.  We aren't being negative; we deserve to have the time we need to recover from the devastation our family has endured. 

13.   Know that it's always on our minds. Know that the stakes are high.
Every second of every day, our minds are on our children.  We don't stop thinking about them.  Our children have suffered too much already.  Whether it was a result of cardiac or respiratory arrest, stroke, blood sugar highs or lows, genetic anomalies, physical malformations or the like, it crushes us to know that our children could possibly suffer from additional injuries.  Every time our child is ordered to have blood draws, tests or procedures, it's a reminder to us that our child could fall victim to a devastating, or worse, fatal disease. Know that you're not going to change how we think and feel about our children. The things that our family has been through have made us a different kind of parent. Please support who we are. 

14.   Avoid getting in the way during hospital stays.
We understand you may want to be involved during hospital stays.  Please remember that we need to spend as much time with our child as possible. This time is not about you or your emotional needs.  While it may be acceptable to sneak into the child’s room if we aren't present, please refrain from expecting us to share our time. This causes an increase in anxiety levels for many of us.  Knowing that you are close by in the waiting room and available in case we need a break or an emergency arises is comforting. Allow us to provide updates when we can, but please keep questions to a minimum. If we request your presence at our child's bedside, be ready to jump in to help. 

15.   We may be struggling with PTSD, ASD, anxiety or depression.
Many of us almost lost our children.  Many of our children have lifelong injuries or disabilities as a result of their disease.  Know that we are judging and criticizing ourselves.  We may be lonely in our thoughts.  We may be experiencing feelings which cause us to cry, experience flashbacks or have nightmares. We are going to get ourselves through this.  We need unconditional support and reassurance. We need you to remain nonjudgmental. If we want or feel the need to share our thoughts and feelings with you, we will.  Please don't try to push us into sharing things that we are simply not comfortable talking about with you. Following our lead is a supportive way to let us know you care. 

16.   If we are up for visitors, let’s make plans.  
After spending months in a hospital room with our children, we are ready to sleep in our own bed, be surrounded by our own things and use our own bathroom.  We are looking forward to living by our own schedules and enjoying our children.  Don’t ask us to pack what seems like half the house to visit to the family. Any other parent with a new child would never consider this as an option, why would we?  We're tired, we would love to see you and you're welcome visit our house. Please call to make plans and give us ample notice. Last minute request put pressure on us. We need time to prepare ourselves.  You may not mind our mess and pajamas, but we do.  Be respectful in allowing us to respond to your request.  If you don't hear from us, it's nothing personal; we simply aren't tied to social media, emails and our devices like we use to be. 

17.   Offer to help with the other kids.
Remember that for many weeks, we had medical personnel, bedrails, tubes and wires between us and our child.  We need help with other things, so we can catch up on counting all their fingers and toes.  We want to change their diapers and feed them.  We want to play dress up and gaze into their eyes.  The perfect way to help us do this is by offering to spend time with our other children.  All the focus has been shifted away from them.  It would be wonderful if you could turn your spot light onto them.

18.   Make meals and bring the sweets.  Finger foods and snacks are greatly appreciated. 
We have a lot of new responsibility, new worries and are very tired.  If you are coming to visit, bringing something yummy to snack on would surely put a smile on our faces.

19.   Help us with household duties.
Daily responsibilities are hard to deal with in time like these.  We need to focus on our children.  We want to hold our babies and we need some downtime too.  Doing a load of laundry or the dishes, making a bed or dusting would certainly take some pressure off. If you come over and eat, be sure to clean up after yourself.  Leaving dishes or a mess behind for us to clean may cause us to regret the visit and possibly cause us to avoid future ones. 

20.   It's a long road to a full recovery.
Please be patient as there are numerous components to fully recovering from long hospital stays and devastating diagnoses.  The grieving process is difficult and different for each person.  During times that we choose to talk about our experiences, engage in conversation by providing support and validating our feelings.  At other times, we may not feel comfortable discussing our issues with you.  Please know that this is not personal. We care for you; we just don't care to discuss our feelings with you at this time.