Jake's World

The poems and prayers on this page have provided me with strength.  I thought it would be nice to share...

Welcome to Holland

Welcome to Holland was the first "poem" of this kind that I ever read - it was very soon after Jake was diagnosed.  I absolutely cried my eyes out.  Some days, it still gets me all choked up.  Other days, I simply smile and nod telling myself how true that last sentence is!!!

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

" Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ...about Holland.

 

 

Heaven's Very Special Child

"Heaven's Very Special Child" was a poem given to me by my Aunt Grace.  Her daughter, my cousin Camille, had special needs and this was a poem she had hanging on the wall in Camille's bedroom.  Although it was many years ago when she first had Camille and already many years since she lost her, we share an unsaid special bond.  I know Camille is an angel in heaven watching over her little cousin Jake!

Heaven's Very Special Child
by Edna Massimilla

A meeting was held, quite far from earth
"It's time again for another birth"
Said the Angels to the Lord above,
"This special child will need much love"

Her progress may seem very slow,
Accomplishments she may not show
And she'll require extra care
From all the folks she meets down there.

She may not run or laugh or play
Her thoughts may seem quite far away
In many ways she won't adapt,
And she'll be known as handicapped.

So let's be careful where she's sent
We want her life to be content
Please, Lord, find the right parents who
Will do this special job for You.

They will not realize right away
The leading role they're asked to play
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for this gift from Heaven.
Their precious charge, so meek and mild
Is heaven's very special child.

 

 


The Special Mother

"The Special Mother" was an article that my Aunt Carmen sent me a month or so before Jake's first birthday.  She worked with children with special needs and had a sister with special needs.  She said this article was a comfort to her own mother as well as a mother of one of the children she worked with.  My aunt sent the article with a note to Mike and I saying the following...."You are God's angels on earth, for Jake - that perfect gift.  God chose you specifically to be his mom, his saint".  I will never forget these words.  Thank You!!

     THE SPECIAL MOTHER

     God Chooses Mom for Disabled Child -- by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew. "Forrest, Marjorie; daughter; patron saint, Cecelia. "Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one, God? She's so happy." "Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a `spoken word.' She will never consider a `step' ordinary. When her child says `Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations." "I will permit her to see clearly the things I see---ignorance, cruelty, prejudice--- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair. God smiles. "A mirror will suffice."

 

 

God Doesn't Make Mistakes

This next poem was something Jake's Godmother, my cousin Kristin, had on her IM profile for all her friends and family to read.  She REALLY knows how to make me cry!!  Kristin and Jake share a special bond - she helped take care of Jake and me while I was pregnant and on bedrest with Jake's twin brother and sister Brandon and Kayla.

You weren’t like other children,

And God was well aware,

You’d need a caring family,

With love enough to share.

And so he sent you to us,

And much to our surprise,

You haven’t been a challenge,

But a blessing in disguise.

Your winning smiles and laughter,

The pleasures you impart,

Far outweigh your special needs,

And melt the coldest heart.

We’re proud that we’ve been chosen,

To help you learn and grow,

The joy that you have brought us,

Is more than you can know.

A precious gift from Heaven,

A treasure from above,

A child who’s taught us many things,

But most of all – “Real Love”

 

“God doesn’t make mistakes”

~ Jake ~

 

 

 

Grandpa Irving - Part 1

The letter below was written by Grandpa Irving (Mike's 97 yr old grandfather who was 94 at the time).  Grandpa lived in Florida - he wrote and sent the letter to Mike and I a little over a month after Jake was diagnosed.  I typed the letter exactly as it was written.  It still brings tears to my eyes.   Little did we know that the request he made for Jake in his P.S. would bring 2 siblings at the same time!! 

 

This picture was taken 2 months before Grandpa wrote the letter...

GRANDPA IRVING'S LETTER

4/28/04 

 

To My Dear Parents –

 

I am writing this letter to see if in my small way I can help ease the pain and sadness that you are feeling due to my condition upon entering this world.  Please do not even think of blaming yourself or for that matter anyone near and dear to you.   This was something where even God could not interfere.  This was a quirk of nature and I am sure you must have heard that you cannot fight mother nature.  But do not despair Mother, Dad, because all is not lost.  It is only ironic that this could happen to two beautiful people like you with a background of two wonderful families like the Zanes and DeFalcos who are as good as the day is long and as pure as the air we breathe.  From now on you must have an optimistic lookout for the future.  Now, with God back on your side and all your faith and him praying with you, things should have a much more rosy outlook.  I am sure you must have heard the expression, there is a light at the end of the tunnel and the old adage, that every dark cloud has a silver lining.  Well, now, Mother and Dad, you have a goal to achieve and when I put in my two cents worth, which is all the love I can muster, you may even find a rainbow at the end of that silver lining.  There it is my Wonderful Parents, all in a nutshell.  GO FOR IT.

 

Your Loving Son,

 

Jake Austin Zane & DeFalco

 

P.S.  Maybe I am a little immature and a little premature but I see no harm in asking that in the not too far future you present me with a sibling.  It would be nice to have a sibling point a finger at me, and say, that’s my big brother.

 

Again with Love,

J. A. Z. & D. E. F.

 

 

Be Strong, And Don't Give Up

The quote below was given to me by my mom.  I always try to be so strong, but at times....I just break.  My mother has been with me for many of these times starting with the morning after Jake was born (Mike had to follow Jake and the ambulance to another hospital and my mom stayed with me).  She always tells me that I'm the strongest person she knows and that I have taught our entire family so much.  I am so thankful for those words!  When there are days that I am "down", I know I need to pull myself together because there IS good in every day...

Be Strong, and Don't Give Up

Remember...there is a deeper strength and an amazing abundance of peace available to you.  Draw from this well, call on your faith to uphold you.  You will make it through this time and find joy in life again...

Life continues around us, even when our troubles seem to stop time. There is good in life everyday. Take a few minutes to distract yourself from your concerns -- long enough to draw strength from a tree or to find pleasure in a bird's song.

Return a smile; realize that life is a series of levels, cycles of ups and downs -- some easy, some challenging. Through it all, we learn; we grow strong in faith; we mature in understanding. The difficult times are often the best teachers, and there is good to be found in all situations. Reach for the good, be strong, and don't give up.''  I know you are going to make it, and my love and prayers are with you.

Pamela Owens Renfro

 

 

Unity

The poem below was given to me by Jake's teacher, Amy,  at Just Kids (the best school EVER!)  We were absolutely terrified about sending Jake on a bus to school for the first time at age three.  I mean....how could there be anyone out there that could care for Jake and love him unconditionally, while at the same time pushing him to be the best he can be?!  Amy and her team made this transition easy!!  If you could look up "perfect teacher" in the dictionary, you would see Amy's picture!!  We will be forever grateful for everything Amy, Michelle (Jake's one-to-one aide) and the rest of the staff did for Jake for the 2 years he spent there.

UNITY

I dreamed I stood in a studio

And watched two sculptors there,

The clay they used was a child’s mind,

And they fashioned it with care.

 

One was a teacher: the tools she used

Were books and music and art;

One, a parent with a guiding hand

And a gentle, loving heart.

 

Day after day the teacher toiled,

With a touch that was deft and sure,

While the parent labored by their side

And polished and smothered it o’er.

 

And when the last task was done

They were proud of what they had wrought,

For the things that had molded in the child

Could neither be sold nor bought.

 

And each agreed they would have failed

If they had worked alone.

For behind the parent stood the school,

And behind the teacher the home.

 

 

Grandpa Irving - Part 2

Below is Part 2 to Grandpa Irving's initial letter.  (Grandpa will be 98 on Nov 29th, 2007).  He is one amazing man.  We can't wait for his visit in a few weeks!

Our visit was the best!  Grandpa had a great time with all the kids and the entire family.   He loved Jake more than anything.  Sadly, Grandpa passed away in January of 2008.   He will always be missed.  Now Jake has another angel in heaven watching over him.

    

The picture was taken on Thanksgiving of 2007

GRANDPA IRVING’S LETTER – PART 2 (09/01/07)

My Dear Parents –

It has been a long time since I wrote you that first letter and a lot of nice things have happened since then so I think I will write a sequel to my first one.  I will start by quoting an old adage that says - God Giveth and God Taketh Away.  Well, to go into detail about this saying, I will say that God took away a part of my Being, over which he had no control.  In order to make up for that, he gave me back twofold.  He gave me back two people who are the most patient, the most considerate, the most understanding, the most loving people that any one could visualize.  These two people are you, my wonderful parents.  I cannot just stop here because I must itemize a few things that you have done to make me what I am today.  You have given me back what God took away and made me a Whole Person.  You have enrolled me in a school with other children of my caliber and I am enjoying every moment that I attend.  You have made me a big brother by presenting me with a pair of siblings who are a miracle from heaven.  Altho they cannot express themselves orally, I can see from the gleam in their eyes and the smile on their faces that they have as much love for me as I have for them.  But wait, there is more.   You gave me two sets of Grand-Parents who are beyond comprehension and they are spoiling me rotten, but I am loving every moment of it.  Then, last, by no means the least, there are all those other relatives and very good friends who treat me as their equal because they know that is how it is meant to be.  So, for all that, my adoring parents, I say -

 

Thank you!  Thank you!  Thank you!  And I love you both will all my heart.

 

Your son -

Jake Austin Zane

A/K/A

BIG BROTHER JAKE

 

 

 

 

 

I Am

This poem was sent to me by another mother of a child with PKS.  It was very powerful and touched me when I read it - a lot of the poem really hits home... 

I Am

 

I am the little engine that did.  When on my journey in life, my tracks led me to the mountain – a diagnosis of (PKS) – I looked at it with defeat - thinking there was no way I could climb over it.  I then pondered the obstacles before me, and I then said to myself over and over, I think I can, I think I can…:, then slowly I started climbing the mountain saying to myself over and over, “ I know I can, I know I can….” And that if I made it over that ominous diagnosis and continued my journey, I am the little engine that did.

 

I am more devoted than Noah’s wife.  I sometimes feel overwhelmed in my “houseboat” – 365 days and 365 nights a year, constantly working and teaching my child.  But when the storms of isolation and monotony become most unbearable, I do not jump ship.  Instead I wait for the rainbow that is promised to come.

 

I am Xena.

Real life warrior goddess of (PKS).  With my steel plated armor I can battle anyone who gets in my way of progress for my child.  I can overcome the stares and ignorance of those without a disability in their lives – educate them as to why my child is the way he is, and why he does the things he does.  With my sword of persistence, I can battle any schools to have them properly educate my child.  Yes, I am Xena – and I am prepared for any battle that might come my way.

 

I am the bionic woman.

With my bionic vision I can see through the disability my child has, and see the beauty in his soul, the intelligence in his eyes when others can’t. I have bionic hearing…I can look at my child when he smiles at me, and hear his voice say, “I love you Mommy”, even though he can’t talk.  Yes, I am thankful to be bionic.

 

I am Mary.

A not so well known mother…of a special child who was brought here to touch those around him, in a way that will forever change them.  And it started with me, by teaching me things I would have never known, by bringing me friendships I never would have had, and by opening my eyes as to what really matters most in life.  Things like the Joy of just living in the moment, the Peace of knowing god is in control, never losing Hope, and knowing unconditional Love that words can not express.  Yes, I too am blessed by my special child, just like Mary.

 

I am Superwoman.

I am able to leap over tall loads of laundry in a single bound, and run faster than a speeding bullet, to rescue my child from danger.  Oh yes, without a doubt, I am superwoman.

 

I am Moses.

I was chosen to be the mother of a Special Needs Child.  I may at times question whether I am the right “man” for the job but God will give me the Faith I need to lead my child to be the best he can be.  And like Moses, God will give me the small miracles here and there, needed to accomplish my mission.

 

I am Stretch Armstrong.

A mom that can be stretched beyond belief and still somehow return to normal.  I can stretch limited funds to cover every treatment and therapy that insurance won’t. I can stretch my patience as I bounce from on doctor to another doctor in a quest to treat my child.   I can stretch what time I have with my husband, my children, my church and still have some left over to help my friends.  Yes, my name is Stretch. And I have the stretch marks to prove it.

 

I am Rosa Parks.

I refuse to move or waver in what I believe is right for my child, simply because he is viewed as the minority, not the majority.  I refuse to believe “What can one mother do?”  But instead I will write, call and rally to the government if I have to, and do whatever it takes to prevent discrimination against my child and ensure that he gets the services he needs.

 

I am Hercules.

The Greek god known for strength and courage.  The heavy loads I must carry would make others crumble to the ground.  The weight of sorrow, Fear at uncertainty of the future, Injustice at having no answers, and the tears of despair, would alone possibly be too much even for Hercules.  But then the Joy, Laughter, Smiles and Pride at my child accomplishments balance the load to make it easy to bear.

 

I am touched by an Angel.

An Angel who lives in a world of his own.  And it’s true; he lives in a world of innocence and purity.  A world without hatred and deceit.  A world where everyone is beautiful and where no one is ugly.  A world where there is always enough time.  A world where he goes to bed with no worries of tomorrow and wakes up with no regrets of the past.  Yes I most certainly am touched by an Angel, and in some ways, his world is better…….

 

I am a true “Survivor”.

The mom of a child who faced, is facing, and will face some of the most difficult challenges life has to offer.  I am ready for the challenge and have God given endurance to last until the end, along with a sense of humor to cope with all the twists, turns and surprises along the way.  Oh yes I am a TRUE “Survivor” and I don’t need a million dollars to prove it!

 

I am a mom of a Special Needs Child, all the above, and so much more.  Some days I will want to be none of the above and just be a typical mom with a typical child, doing all the typical things.  On those days I will know it’s Okay to be angry, and to cry, and to lean on my family for support.  Because after all….the most important thing that I am…..IS HUMAN!!!!

 

 

 

Celebrating Holland ~ I'm Home

The next poem was given to me by Michelle (Jake's one-to-one aide from Just Kids).  She was such a source of stregth and still  is to this day.  I know that no matter how long it is between our coversations, we can pick up where we left off.  I know she "gets me" and she definitely knows Jake inside and out. To this day, she is someone I know can always count on when I need to talk about things.  Thank you Michelle - for everything! 

Celebrating Holland- I'm Home

By Cathy Anthony

I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger, the pain and uncertainty. Inthose first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.

I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.

Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.

I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?

Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.

I have come to love Holland and call it Home.

I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.

Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!

 

 

I Do Talk to You

 March 26th, 2014

Saw this posted on facebook today by my special friend Gretchen!  This poem really hits home.  I love it and had to make it a part of Jake's website 

 

"I Do Talk To You”
By Jessica Soukup, 11/98

I know you can’t hear me....but I do talk to you.
And I hear everything you say to me too.
I hear when you laugh, when I do something funny.
I hear you yell "Hooray" when I try so hard.
I hear you tell others how you’d never trade me for the world even with all the trials I came with.
I hear you thank God for what a blessing you have been given.
I hear you encourage me when I can almost do it.
I hear you cry, too, when it gets a little harder
And when you ask God "Why, your baby?”
And I know you know I understand somehow.
And you know I listen when you talk to me too.
But, I want you to know, mom...........
I do talk to you.