My oldest daughter, Katelyn, walked in the house after having lunch out with her friends today.

“It smells good in here,”  she said.

“Like what?”  I asked.

“Family” she said.

My heart wanted to explode.  Such a simple, yet profoundly meaningful statement from my 17 year old daughter.  In a little over a year she will be off to college.  I think that is why her statement struck me so strongly.  It brought tears to my eyes.  Happy tears.  Thankful tears.  Grateful tears.  One simple statement that sums up my entire parenting philosophy.  For my kids to feel Loved.  Safe.  Accepted.  Valued.  Respected.  Comfortable.  Happy.

Here, at home.

Family.

It smells like family.

Tomorrow I will host 30 people.  My home will be bustling with food, fellowship, love and laughter.  (And of course, lots of wine!)

My heart will be full.

We will have an empty chair but his presence will be felt.  In all our memories.  Eating my green bean bundles that he loved (the only green beans he would eat!)  Drinking a bourbon and 7-up.  The first one to the dessert table.  And back again.  And again.  Smiling his warm, beautiful smile.  Telling jokes.  Playing with his grandkids.  Watching football with Cody.  Snoozing on my sofa, holding my mom’s hand.  Telling me what an amazing job I had done.  I can still see him, hear him, smell him.

It smells like family.

My wish is that your home always smells like family.  In whatever fashion that may be for you.

Happy Thanksgiving and many blessings and love to you all!

 

October is Down Syndrome Awareness Month.  Over the past ten years, John William has continually amazed us with his zest for life and has shown us that life is meant to be a celebration!

He has a heart that is pure.  He sees the world from a different perspective, a perspective of simplicity.  His love comes from a place that knows no social boundaries, no class hierarchy, no differences among races.  Unpretentious, unbiased goodness.  Free from fear, anger, greed or grudges.  He sees the best in everyone, giving his love freely to all around him.  He is innately aware of others’ feelings and emotions.  He is immensely compassionate and can readily sense when someone needs a hug.

He is the best kind of friend.  Loyal, kind, forgiving, accepting and so much fun!  His smile is infectious.  His laugh, contagious.  He loves to joke and has a quick-witted sense of humor.  He is strong-willed and knows exactly what he wants.  He works hard to achieve his goals.  Most of the time, surpassing them, but sometimes not.  Sometimes, we take three steps back.  So we regroup and try again.  With that comes the realization that our journey is not a race.  He is on his own timeline, not to be compared to anyone else.  And that is perfectly acceptable!  All we ever want is for John William to be the very best that he can be, whatever that may be!

He loves to play baseball.  He is a whiz at any and all types of games and is fiercely competitive.  Get ready to play over and over again until he wins!  He is obsessed with Disney movies and knows all of their soundtracks by heart.  He loves all songs by Florida Georgia Line and sings along loudly to the radio.  He loves to travel, especially to the beach.  He can swim like a fish.  He rides the scariest of rides with absolutely no fear!  He loves, and I mean LOVES, spaghetti and meatballs from our neighborhood restaurant, Center Court, where they treat him like a celebrity.  He is a vibrant member of our St. Laurence Parish Community.  He is reverent at mass and participates in the prayers and hymns.  He is filled with the Holy Spirit and it radiates around him.

He is a beautiful combination of myself, my husband and his two older sisters.  Completing our family.  Making us strive to be the best versions of ourselves, every. single. day.  He is a calming force in stressful times.  He is our Prince of Peace.

I believe, with my whole heart, that John William was a gift from God.  We were CHOSEN.  And we are the lucky ones.  He has brought us endless joy, taught us immeasurable life lessons and made us see life in a way that can only be seen through a disciple’s eyes.  He has changed us…for the better.

So you see, Down Syndrome Awareness goes way beyond the crazy sock day.  It is a DAILY AWARENESS that he is capable!  He will be successful!  He is worthy!  He has value!

There is not one single thing I would change about John William, except the way the world views him.

Take the time to get to know him.  You’ll be glad you did.

 

I have learned many things this past year, about myself, about the grieving process, about faith, about hope, and about healing.  When it comes to dealing with grief, I have learned that you have to let yourself live it.  You cannot run from it.  You cannot hide from it.  You cannot dismiss it as simply a bad day.  You cannot tuck it away in your pocket to deal with later.  You cannot pretend you are ok.

You have to let yourself feel every emotion, every heartache, every sadness, every bit of anger, every sense of drowning, every loss of breath, every longing to see him again.

You have to deal.  You have to process.  You have to cry every tear that wants to fall.

You have to face things you do not want to face.  John William’s first birthday without him.  His first birthday in heaven.  The first Grandparent’s day without him.  The first Thanksgiving without him.  The first Christmas without him.  The first New Year’s without him.  The first Wedding anniversary without him.  The first Valentine’s Day without him.  The first Easter without him.  The first summer vacation without him.  Your own birthday without him.  Mom’s first birthday without him.

And now, today, the first anniversary of his death.  How has it already been a year?  An ENTIRE YEAR without him?

Together, we bravely faced all of those firsts and we made it.  With each other, all of you, and most importantly, our faith.  We have kept moving forward and will continue to do so.

Thank you, dear friends, for walking with me through this past year.  For allowing me to bare my soul in order to heal my brokenness.

It is crazy that my darkest year made me the strongest I have ever been.  Like the lilac, that only blossoms after a harsh winter.

As always, John William has shown us the simplest way to carry on…to remember him every day with love, laughter and fun.

I miss him every second of every day.  But only his physical presence.  As I can still feel his love, I can still hear his wisdom, and I can still see the pathway he has laid before me.

The Pathway- by Jenifer Martin

Walking steps to my front door

Goodnight Dad, I love you more.

Then comes a call in the middle of the night

A massive stroke, now in Life Flight.

Racing feet to the medical center

Frantically wondering if he will get better.

Doctor’s feet come in the room

Faces crying, filled with gloom.

Trembling feet in Hospice care

Shallow breathing fills the air.

Unsteady feet, I start to cry

I don’t want to say goodbye.

Floating feet, now you can soar

With the Lord forevermore.

Dragging feet as life moves on

How do I cope now that he is gone?

Surrounding feet will be my guide

Showing me that love abides.

Little feet will always be

Holding on to memories.

Sturdier feet, a year’s gone by

Since we said our last goodbye.

Heavenly feet show me the way

Until we reunite someday.

 

I love you Dad!  9-29-17

 

Sometimes my prayers flow out as poetry.  I wrote this poem for you all.

“When Your Heart is Guarded” by Jenifer Martin

When your heart is guarded

and you feel misunderstood

When life tries to knock you down

and you’re only trying to do good

Find solace with the Lord

He will always understand

When you feel invisible

Let God take you by the hand.

When you don’t know where you fit

Among the circles in your life

When your path becomes unclear

due to uncertainty and fear

Set your eyes upon the Lord

Pause, be still

He is calling, hear His summons

Will you follow?

Are you able?

There is always room at God’s table.

Let’s not be so quick to judge

an action, word or deed

Instead, be kind and understand

the battle underneath.

God says the lowly are the great

the meek are first in line

Come forth and bring your storms

Take refuge with the Lord

together we will weather

For you are NOT alone

Find peace with Him,

Your one true God

Rely on Him forever.

For God is love, for ALL of us

each person is deserving

Let go of grudges and distrust

from heartache in your past

through grace and forgiveness

grow and heal we must.

When you choose to serve the Lord

your eyes will open wide

our differences will disappear

and goodness will abide.

Not everyone will understand the chapters in your book

some will only briefly pause to take a look

Do not dismay,

let them go on their way

there will always be one in your corner

by your side in glory

Trust in Him with all your heart

Besides, HE wrote the story!

As I stated in my very first blog post, I would be sharing with all of you some of the peaks and valleys of raising a child with special needs.  As most of you know, my nine-year old son, John William, has Down syndrome.  There are so many beautiful moments.  Moments that take my breath away.  Moments that reassure me that I truly am worthy of raising him.  Moments where I am certain he is an angel among us.  Peaks with glorious, heavenly views.

There are also moments where I question if I am doing enough.  Moments where my heart breaks a little bit.  Moments where I feel defeated.  Valleys filled with doubt and loneliness.

I do however, appreciate both the peaks and the valleys, because there is beauty in both.

Currently, I am in a valley.  There are so many challenges that go on behind the scenes.  A side that you don’t see.  A side that I don’t show.  A side that I don’t share.  But today, I need to share.

“Back to school” is one of the hardest times for our family and John William.  While others are excited for a new year, eagerly ready for the hustle and bustle, for myself and John William, it is a whole different ball game.  New teachers, new paraprofessionals, new friends, new classrooms, new routine, new curriculum, and new expectations.  For the child with special needs, the newness of it all can be quite overwhelming and more complicated than most.  Often leading to melt downs, frustration and defiance.  For a child who does not express himself verbally,  this is simply his way of showing me that he is having a hard time adjusting.  An action that often, only a mother can identify and understand.  For a child who likes everything the same, day after day after day, even down to the same plate and fork, new routines rock his world.

After a summer of being in his comfort zone, under my careful watch, in an environment filled with praise, affirmation and love, I now have to turn him over to a world that is not always kind, not always accepting, not always patient, not always understanding.  The balance of catering to his unique needs while teaching him how to adapt to change and live in the real world are not for the faint of heart.  There are times I have to push him out of his comfort zone, when all I really want to do is scoop him up and protect him…forever.

However, every year, without fail, an angel comes into his life.  Sometimes it is a director of a preschool who reaches out and says, “he is welcome, we want him, bring him here” and goes out of her way to ensure his success and truly believes in and practices inclusion.

Sometimes it is a fellow student, who is able to see the qualities he has to offer in a friendship.  Who listens to his stories, even though he/she may not be able to understand him.  Who teaches him to finally swing on his own, or shoots baskets with him at recess.  A friend, who invites him over for swimming and karaoke.  Because just like everyone else, John William needs friends.

Sometimes it is a teacher, who is able to see the ABILITY, not the disability, and goes above and beyond to find the strategy that works for John William to reach his full potential.  A teacher with unlimited patience, who realizes that it may takes weeks, even months for John William to master the daily routine, but that he can, in fact, get there.  A teacher who stays in touch with you years later, because she truly loves John William, even coming to his baseball games on the weekends.

The journey can often be lonely, as a parent.  At times, it is harder on you than the child when he is not invited to birthday parties.  Harder on you, when he is not invited to playdates.  Harder on you, when he does not make his first communion with the rest of his typical peers.  But you know what?  None of that matters.  Because John William is happy.  And he only knows love.  And pureness of heart.  And oh, what a beautiful way to live.

So I ask you, when you see a family with a child with special needs, to give them a kind smile.  You have no idea the battle they fought to simply get to church, the grocery store, the restaurant, or school.  Give them grace.  But most of all, pray for them.  Because their journey is not easy.  But then again, most things worthy of God’s grace are not easy.

This past Sunday at mass, we had a visiting Basilian priest.  He gave the most wonderful homily about “putting on a new self.”  What perfect timing for this particular season in my life.  Personally, I have “put on a new self” physically, spiritually and emotionally.

Since beginning my real food journey in January, my physical self has changed dramatically.  Weight loss was not my main goal, it was simply a byproduct of completely changing my relationship with food.  I wanted to nourish my body in the best possible way.  I was tired of the yo-yo’s of dieting and truly wanted to make a lifestyle change.  I began by cutting out processed foods and only eating REAL food and I began to feel better than I ever had before!  I also began walking.  It started as a fitness goal, but my daily walks quickly turned into a mental release that I craved!

I have a new spiritual self.  Different than before.  Deeper.  A more intentional self whose eyes are focused on God.  HE alone is my refuge.  HE became more and I became less.  I allow HIM to work through me.  I listen more.  Truly listen.  I am open and eager to see the changes HE has for me.

I have a new emotional self.  I am less anxious, happier and more at peace.  My joy now comes from within.  I have positive thoughts that lead to positive choices.  Happiness is a choice, not a result.  I made the choice to be happy.  Happiness will not come TO you, it can only come FROM you.

My new self has chosen to be present over perfect.

Perfectly imperfect.

Because let’s be honest, the pursuit of perfection leads to pretending.  Pretending then encourages others to also chase perfection.  And it’s all just SO VERY EXHAUSTING.

Don’t complicate life.  Choose to live simply.

Leave behind what is dragging you down.  Maybe it is hurt, fear, judgement, frustration, anger, sadness or negativity from your past.  The past cannot be changed, but it does not have to define you.  Learn from your mistakes and move on.  Use them as valuable lessons to better your new self.  Turn it all over to HIM.  Let go and let God.

Embrace change.  Without change there can be no growth.  Have patience and remember, it is a process.  Everyone’s journey is different and unique, just to them.

Put on a new self whose heart is grateful.  It truly is a wonderful way to start each day.  Instead of waking up thinking about what you HAVE to do today, change your mindset to what you GET to do today.

Dear friends, let’s give each other the gift of transparency and grace as we focus on God and “putting on a new self.”  Because perfection simply does not exist on this side of eternity.

This alone!  This alone is everything to me!

Walking with the broken requires the ability to give grace.  Giving grace to the person who, for whatever reason, be it heartache, sorrow, grief, loss, financial troubles, marital problems, a new diagnosis, strained friendships, difficult family dynamics, stress, anxiety, a recent move, is unable to be their strongest self.

What do I mean by giving grace?  I mean, accepting that the person may not be able to function as they normally would.  Loving them anyway.  Accepting that their actions during that time may indeed hurt you.  Loving them anyway.  Accepting that your relationship with that person may look a little different for a while because they might need to pull away.  Loving them anyway.  Accepting that none of us are perfect and we all deserve grace.  Turning the focus away from yourself and your needs and focusing on their needs.

September 29, 2017.  For the first time in my life, I was the broken one.  I managed to make it forty three years without being broken, bravely facing every challenge that came my way.  But losing my dad broke me.  Watching my mother grieve the love of her life broke me.  Trying to explain to my son with Down syndrome that his soul mate was gone broke me.

So many people walked with me while I was broken, each in their own way.  There were those who had also lost a parent, who provided words of comfort.  There were those who didn’t know what to say, so they simply sat with me in silence.  There were those who prayed for me.  Those who cried with me.  Those who held my shaking hands. Those who brought me a meal, because, well, food is comforting.  Those who provided a welcome distraction by leaving a fun basket on my porch.  They all walked with me.

It is so easy to sit with the great.  To be in awe of the power, the wealth and the glamour.  To go along with the fun, social crowd because their life seems more enticing, more exciting.  Because that road requires less of us emotionally.  Requires less effort.  Less self-reflection.  That road is less daunting.  I challenge you to ask yourself…what real fulfillment is that giving you?  How is that feeding your soul?  How is that bringing you closer to God?  Take a minute and think if you have indeed ever walked with the broken. Or have you shied away because that road is not as easy?  Because you are nervous, afraid or worried that you might not know what to say?

Walking with the broken is a beautiful, selfless act of love.  It can be as easy as looping your arm through their arm until their feet are steady again.  Opening your heart to them until their heart is mended.  Giving a smile until their smile can return.  Being their eyes when they cannot find their way.  Lending your ears when no one else will listen.  Being the light in their darkness.  Understanding and being patient, knowing this is only a temporary part of their journey.  All simple acts that can make a huge difference.

We find true joy in compassion.  Doesn’t it seem ironic that by suffering with another, we could find joy?  By simply being with someone in their time of despair we experience true humanity, loving our brothers and sisters through their weaknesses, which in turn, brings us joy.  Most importantly, it brings us closer to God.

Type 1 Diabetes.  Katelyn has Type 1 Diabetes.  A life-threatening illness with no cure.  This is what we learned when she arrived at TCH.  A virus attacked her pancreas and caused it to stop producing insulin.  She would have to take insulin injections for the rest of her life.  Her carefree life for the past seven years was about to change more than any of us could possibly imagine.  All of our lives were about to change.

So now here I am, learning all I can about Down syndrome AND Type 1 Diabetes.  To say I was on information overload was an understatement.  In keeping with the tradition of always finding the positive in each situation, the positive aspect to this extremely difficult situation was now that Katelyn was admitted to Texas Children’s as well, I had a bed to sleep in and would no longer have to trek back and forth from home to the hospital.  During the next week, I spent my time going up and down between the two floors from John William to Katelyn, John William to Katelyn.  Over and over and over.  I was learning about carb counting, insulin correction, long acting insulin, short acting insulin, target blood sugar, low blood sugar, high blood sugar and ketones.  I learned how to give my daughter an insulin shot.  I learned how to give her the Glucagon shot in case she passed out.  I was terrified.  Completely terrified.  But I did not show it to Katelyn.  I put on my brave face every single day.  Moms have an incredible knack for being able to be brave for their children, am I right?  It was an exhausting seven days in the hospital with her, both mentally and physically.  All the while, praying John William would continue to improve so that we could all just go home. I just kind of floated along, with the help of family and friends.  My village was still in full force, anticipating my every need.

Two children in the hospital at the same time.  TWO!  I began to wonder why in the world God believed that I was strong enough to handle that scenario.  Two, in the same week?  Could He not at least have spaced it out a little bit?  I wasn’t doubting God’s plan, rather, I was doubting myself.  Was I even worthy?  Then it all began to make perfect sense.  He had given me every tool I needed.  A strong faith.  A rock-solid marriage.  A support group of family and friends.  A Prince of Peace.  He knew I would need John William to be able to handle the monster of a disease that is Type 1 Diabetes.  Because if you are lucky enough to know John William, you know that he simply makes everything better.

Katelyn was released after a week and John William was released after a month.  We would all be home as a family to begin our new normal.  The life God planned for us. Yes, in one short week our life had completely changed.  A change that centered us.  A change that made us grow.  A change that made us better.

Life is full of storms.  Real storms that shake the foundations of the life you have built.  This particular storm shook me deep into my core.  But it is the plan He had for me.  I trusted Him to be my anchor.  I am forever grateful for the friends and family who simply got in my boat and helped me weather the storm.  It’s just a small part of my story, but it gives you a glimpse into my life over the past ten years.  A beautiful life. Thank you for bearing with me for three long posts.  I had not intended for my story to take three posts, but I needed to explain it in stages.  As we move forward together on this journey, I will share about topics that are close to my heart.  Life lessons I have learned and some lessons that I am still learning at age forty-three.  I will share how I completely transformed my relationship with food.  How I have become the strongest, healthiest, happiest version of myself.  What I did and what worked for me.  Glimpses of grace from my soul. And if just one person’s heart is touched, just one person is given hope, just one person is inspired…then it will all be worth it to me.

 

Not even 48 hours after my c-section, I was cleared to leave the hospital.  I was desperately longing to finally hold my son for the first time and the doctor knew it.

Walk by faith.

Upon entering the Level 3 NICU at Texas Children’s Hospital, I am instructed to wash my hands at a large washing station, a routine I would become accustomed to for the next thirty days.  I will never forget the smell of the soap or the feel of the scratchy brown paper towels.  I am led to a small room.  As I glance through the window, I see a large, elevated incubator with machines and wires galore.  I turn the corner into the room and see him for the first time. A heavenly vision.  An angel among us.  His fuzzy blonde hair gleaming under the glow of the lamp.  His perfectly round face and big blue eyes.  His tiny little body covered in monitors of every kind.  I look at the nurse and without having to say a word, she takes him out of the incubator and hands him to me.  In that moment, all is right with the world.  I realize then and there, that everything is going to be ok.  A calm and stillness envelope me.  I soak in every detail of my littlest love.  I do not see a baby with Down Syndrome.  I only see my son.  John William Martin.  My prince of peace.

Walk by faith.

After meeting with many different doctors and all of their “teams” over the next few days, we learned that John William suffered a stroke in the womb, had very low platelets and a small hole in his heart.  I tried to process the medical jargon, but all I could really focus on was being with him every second that I could, feeding him, holding him and smothering him with kisses and love.  In his first week of life, he had already charmed everyone, including all of his nurses, and had everyone wrapped around his little finger.  Family and friends took turns being with him because I could not fathom the thought of him being alone in the NICU.

Walk by faith.

I was still trying to recover from my c-section, while traveling back and forth from home to the NICU at Texas Children’s, learning all I could about Down syndrome, bonding with my new baby…all while taking care of my other two children.  Remember, I was still having concerns about some unusual behaviors Katelyn was exhibiting.  Thankfully, I had an amazing village that immediately went into action, anticipating what my family would need before we could even ask.

Walk by faith.

There is something very unnatural about leaving the hospital day after day without your baby.  It was heart-wrenching and I cried every time I had to leave him.  But what was worse was seeing the babies who we knew would not be leaving the hospital.  Oh how we ached for those parents.  So we chose to focus on the positive.  The fact that at least our baby would be coming home with us at some point.  He was improving every day.  We felt very blessed to live in a town with one of the top medical centers in the United States.  We knew he was receiving top notch care.  Little did we know that Texas Children’s would soon be taking care of not one, but two of our children.

Walk by faith.

Katelyn had not been acting like herself.  She was lethargic.  Extremely thirsty.  Having accidents during the night.  I thought maybe she was just out of sorts since John William was in the NICU and our life had been anything but routine for the past week.  I had her sleep with me to see if I could calm her nerves and comfort her.  Nothing like a good dose of snuggles with mom, right?  She went to the bathroom fourteen times during the night. I assumed she had a bladder infection.  The next morning, because I was heading up to the hospital to feed John William, I asked Cody to run her up to urgent care at the front of the neighborhood to see what was going on with her.  It was Sunday and our pediatrician’s office was closed.  So off they went.  I will never forget the phone call from Cody.  “Jen, Katelyn has ketones in her urine and her blood sugar is over 600.  We are headed to Texas Children’s.”