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The February Day That Makes Me Proud to Be the Mom of a Child With Rare Diseases

Tuesday, January 19, 2016

Traditionally, February has always been one of my least favorite months of the year. Let’s face it: in February the weather stinks, daylight saving time doesn’t begin for over a month and summer seems far off into another atmosphere, despite the fact that bathing suits are already hanging in department stores.
Three years ago, shortly after my daughter’s birth, she was diagnosed with mosaic Beckwith-Weidemann syndrometrisomy 12 mosaicism and hyperinsulinism. Three very rare diseases caused a rare event to occur, and my perspective on February changed.
In addition to learning about my daughter’s rare diseases and prognosis, I found myself taking a crash course on the purpose of awareness days, specifically Rare Disease Day, held every year on the last day in February. To my surprise, it was a big “to do.” I learned that thousands of events take place across numerous countries every year. I studied up on how rare disease organizations strive to raise awareness and how they serve as advocates for people affected by rare diseases. I took time to educate myself on the organizations’ contributions to the advancement of national policies for rare diseases.
Then, I paused for quite a while.

woman hugging girl wearing glasses
Lynda and her daughter

I took time to speak to other parents whose children’s lives were affected by a rare disease, and this is where the real learning took place.
I learned that for many parents, the last day in February is a day on which they stand on common ground to connect with others who face similar fears — a secure and safe place to relate. For some parents, this day represents their search for answers or a definitive diagnosis, a search which for many started the day their child was born. For most, it is about the fight toward a cure for their child’s disease. For others, it’s about the anguish of having to settle with the unknown. And still for other parents, this day serves as a memorial for their angel who looks down on them from above.

I’ve learned that, for all of us, this last day in February serves to bring awareness to what our children experience daily. It serves to shed light on the passion and tenacity
our children possess. To spread the news of the courage our little ones have to push through each and every day. To inform others of the trauma many of our kids have endured. To bring attention to the grief parents feel when we are unable to alleviate our child’s agony. This day serves to facilitate conversations about a parent’s fear of the threat of losing a child or the anger and grief when receiving a diagnosis.

Then I paused again and took a long look at myself, my husband and my daughter and have slowly learned what Rare Disease Day means for us.
For me, the last day in February is an important one, a day I’ve fallen in love with. It serves as a reminder that we are in the company of an elite group of parents and children who have redefined what living life to the fullest means. It’s a day I celebrate being a different kind of parent and living a different daily “normal.” It’s a reminder to me that my husband, daughter and I, as a family, represent strength, resilience and perseverance. It’s a day that makes me proud to call myself her mom.

This post has been published on The Mighty.

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