Welcome to Holland by Emily Pert 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 the unique experience to understand it, to imagine how it would feel. It's like this:

    

    When you are going to have a baby, it's like planning a fabulous vacation trip-to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum. Michelangelo's "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 flight attendant comes 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 flights plans.  They've landed in Holland and there you must stay.

 

    The important thing is that 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.  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, Holland has tulips, Holland even has Rembrandts.

 

    But if you spend you 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.

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Joe and I have been very blessed to have many friends who have decided to take the trip to Holland with us. We didn't even have to ask, people just got on board and are taking the trip with us. They are experiencing the "difference in Holland", but helping us to see all the beauty that will result from our special trip.

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FOR ALL THE MOTHERS OF SPECIAL CHILDREN................

THE SPECIAL MOTHER

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 take notes in a giant ledger. "Armstrong, Beth, a son.....Patron Saint, Cecillia." "Ruthledge, Carrie, twins. Patron Saint........giver her Gerard. He uses 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, could I give a handicapped child a mother who doesn't know laughter? That would be cruel."

"But does she have patience?" asked the angel." I don't want her to have too much patience or she'll 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 sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has his own world. She has to make it 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 separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied."

"She'll 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 a witness to a miracle and know it. When she describes a tree or a sunset to a 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 and prejudice...........and allow her to rise above them. She will never be alone. I will be at her side every minute of everyday 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 ready. God Smiles,


"A MIRROR WILL SUFFICE"

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This is one of my favorite poems borrowed with permission from our friend Aaron's website. When I question, " Why me?" I try to reflect on this poem.  This poem gives me strength and helps me not to question anymore.

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A few things I have learned:

• Never, ever, ever doubt a mother's instinct. It is what led us to get diagnosed. No matter what it takes, get a million medical opinions on an "instinct" until you find someone to trust you. The doctors forget to give you the "instruction manual" on how to raise babies when you leave the hospital. I say this is why God gives us instincts.

•  I never leave home without my favorite Christian Dior lipstick, emergency central line kit, and emergency Christopher notebook (contains all doctors numbers, meds, etc...)

•  You are excited to learn your child has a kidney infection when you know it could be worse.

• When your baby pees in his eye, starts crying because he scared himself, and throws up, it can cause you to laugh harder than you ever imagine.

•  Vaseline is wonderful to remove dressings, tape, and electrodes ( a tip from my friend DeDe)

•  Your heart breaks worse than you ever dreamed was humanly possible, it becomes an open wound you can never imagine was possible.

•  The goodness and kindness in peoples hearts is breathtaking. There is so much beauty in the world.

•  I feel I can do anything in the world now, because I have already live through hell, so what else is there to be scared of out there? Nothing!

•  God has shown himself in so many unexpected ways, Through the wonderful doctors and nurses. Through our good friend nurse Becky who has taken us under her wings and makes sure we eat. She is our angel sent to us by two friends from college to help look after us.

•  I feel guilty when my child has GVHD. So many parents want their kids to get GVHD to help fight their disease and don't get it. (You want kids with an oncology problem to get GVHD, Christopher doesn't need it because we are trying to give him something back he doesn't have, we are not trying to kill anything bad).

•  As I write this tonight Christopher is in the ICU and I have many emotions. I actually manage to feel guilty my child is the healthiest one in the unit. Their are parents laying in the waiting room, on chairs, or on the floors. They are waiting to see if their child will live or die with every second that passes. I was struck tonight by a dad who fell asleep waiting to find out if his daughter would awake and if she would be a "vegetable". He carries around a tattered Bible and fell asleep with it on his chest. I feel like I am in the middle of a war field.

•  I will never forget the look in my baby's eyes as he looks at me through the hospital crib. I put my finger through the bars of the crib so he can hold it and fall asleep.

A few things others have taught me:

•  No Matter what age I am I need my girl friends more and more every day. You make me laugh, you make me cry, and you hold my hand. I feel our bond only grows deeper with time.

• The goodness and kindness in the world is breathtaking.

•   On my journey here at Hopkins, I have had 3 people, on 3 different occasions, look at me, without me saying a word to them. They will start to tell me of the wonders of prayer and the beauty of the world, God plants angels everywhere.

•  The oath I made with my sorority sisters 10 years is an incredible bond of love and hope, and you will always all be in my heart (even though I don't remember the secret handshake). You have never failed me, and always manage to be by my side through thick and thin for the past 10 years. You make me smile!

•  Aaron's mom told me to rub my cheek against my baby's bald head from chemotherapy. It is a feeling and a bond like no other.

• My husband has taught me patience and the rewards of being best friends. We have learned teamwork to help save an angels life that was entrusted to us.

• My parents have taught me what it is like to be brave and strong, and turn a precious life over into the hands of God.

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One Second

One Second is all it takes .......

• to hear the words positive or negative

• for the car to hit the tree

• for the truck to swerve into the lane

• to make an error that could cost someone their life

• to receive "the phone call"

• to have a nightmare begin

• for an aneurysm to burst

However.....

One second is all it takes.....

• to smile at someone

• to say a prayer

• to stop and see the beauty in the world

• to breath

• to have a miracle occur

• to be given a life back

One second is all it takes.......

.....to change someone's life forever

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After working in a trauma OR, and being exposed to the situation here, I've realized how we can live our lives with truly, one second, changing everything. I think about "one second" a lot with my patients. One second they are driving down the road, and the next second their life could end or be changed forever. On October 17, 2003 we heard the word positive, and in that one second our lives changed forever.

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What I've Missed

I've/We've missed:

...birthday parties, super bowl parties, and impromptu dinners with friends every weekend

...seeing some of my closest friends (Amanda & Christie) tummies grow throughout their pregnancy

...stroller rides with Christopher's buddies

...work, grad school, and my buddies from work, including our occasional "fluid rounds"

...the days I could come home and gross my husband out at dinner with a good story from the day

....my dog and cats, the dog barking and terrorizing the cats

....Christopher going to daycare and his "art projects" we hang on the fridge

...being involved in helping plan the weddings of my sister & best friend, 2 weddings I will be in this year, and weddings I have been anticipating for many years (this pains me beyond words)

....the days when our life did not revolve around ANC counts, the fear of graft vs. host, and conversations with people didn't include the newest days drugs or treatments

...laughing (I still try to find things to laugh about every now and than)

...living a "normal life"

...just being able to worry about normal baby stuff, and not having to deal with a million different people a day just to save his life.

...privacy

I've/We've gained:

...a pain so deep, no words can describe it. Some days I get physically sick from nerves.

...a greater and deeper understanding of God

...friendships even deeper & richer with all our friends than we could ever have imagined.

...looking at life in a new light

...renewed relationships with friends we haven't talked to or seen in years, and new friendships with amazing people. These relationships have given us strength we could never dreamed possible.

...a perspective of my parents I never had, and the privilege of having them to help guide me through this maze of sadness.

...the art of forgiveness. I somehow have to forgive the person that made the medication error and overdosed Christopher. I have to forgive fate for allowing this to happen to my family. By holding on to anger and "why me's" It only allows the disease to win.  I was at Target a few weeks ago and ran into a wonderful friend who is an angel and told me it is OK to be upset, but only by forgiving do I win the battle.

 

 

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I'm usually a very positive person, but today 3/3, I am feeling a little down and this will hopefully be the only negative section on this website. We are blessed by many things, but today we feel there is a whole other world going on around us without us.

We've been in the hospital quite a long time now, we've missed many things.

 

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Footprints In The Sand

One night a man had a dream.

He dreamed he was walking along the beach with the Lord.

Across the sky flashed scenes from his life.

For each scene, he noticed two set of footprints in the sand;

One belonging to him, and the other to the Lord.

When the last scene of his life flashed before him, he looked back at the footprints in the sand.

He noticed that many times along the path of his life there was only one set of footprints.

He also noticed that it happened at the very lowest and saddest times of his life. 

This really bothered him and he questioned the Lord about it. 

“Lord, you said that one I decided to follow you, you’d walk with me all the way.

But I have noticed that during the most troublesome times in my life there is only set of footprints.

I don’t understand why when I needed you the most you would leave me.”

The Lord replied, “My precious, precious child, I love you and I would never leave you.

During your times of trial and suffering, when you see only one set of footprints in the sand, it was then that I carried you.”

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This poem was sent to me by my Great Aunt Martha Ann. We are so thankful to be together, thank you and your whole family for coming into our lives when we needed you most!

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Praying over Nail Polish

      I go home about once every 3 weeks or so to get my hair cut, go to a doctor's appointment and run errands. My feet were hurting this week from standing by the crib, so I decided to get a pedicure (my feet were also looking rough). As my toes were drying at the nail drying station (all ladies know you sit at a little nail drying station as the toe nail polish dries) I got talking to the three other ladies there. I told them  about Christopher.

      All the ladies said they would pray for Christopher. One lady asked if we could pray for him now. So, here we were, 4 strangers, at a nail polish drier booth and we all held hands. We boughed our heads, and one of the ladies started praying for Christopher. I will never see these strangers again, praying for my son, but it was an incredible experience. I learned at that moment God puts angels around us everywhere. Only by opening our eyes and allowing ourselves to embrace the world around us do we truly see the angels. They come in all shapes, people, and places least expected. The one thing I do know is, they really are here among us, they float in and out of our lives when we least expect them.

      I have had some incredible experiences here at Hopkins. There have been experiences over the past few months that have truly amazed me and had me in awe. A few weeks ago I was at the Pharmacy. I was trying to keep my composure together, however,  I was crying and not making eye contact with anyone. Their was a line of people behind me and the pharmacist asked " Can you please step around to the side Mrs. Migliozzi." "Great", I thought to myself, what could possibly have gone wrong with the insurance now? The pharmacist grabbed my hand and started praying for my infant son. I didn't tell her I had a baby, I never even talked to her,  I had never seen her before, and will never see her again. I thanked her and left with my mouth hanging open at how she knew I had a child so sick.

       One day during Christopher's 4 week hiatus after transplant we went to Wal-Mart. We went to get toys for some of our friends still in the hospital, and off we went driving through the porn district, slum district, and than the Wal-Mart district of Baltimore. I made a return at Customer Service, and started strolling. This lady with a Wal-Mart jacket comes racing after me, she about ran me over and threw me to the floor.  She looks at Christopher and says "Mam, your child is blessed. He is a gift from God sent here to do great things." I stopped and said "Excuse me"? I thought she was either the Customer Service lady and I had forgotten something, or another stranger about to make a rude comment about the baby with the face mask and bald head.

        She said she looked at Christopher and told me "He is a survivor, he is a miracle, and will do great things and be strong." Now, I could have easily kept walking and blown her off as a crazy old lady, but I don't know. Maybe she was a messenger that day telling me to hold on tight, he will survive one day. Or, she could be a crazy lady. But, I've learned since I've been here to open my heart and look at who comes in and out of my life.

     One day I had my head down on Christopher's crib in the PICU. I was worn out and holding his finger. The janitor came and layed a Bible in front of me. He opened it to a verse about strength and adversity.

      I've learned a lot in my old age here at Hopkins. The pain of having a child or loved one who is sick and living in a hospital is a pain that can never be described. It cuts to the core and is the deepest hurt one can ever imagine. I think a person can recover from physical pain, but emotional pain, no matter what the source the pain was caused by, is the pain that scars people for life.

 

However.....

 

A wise old friend told me (you know who you are, I love you):

Only by experiencing the deepest of pain do we truly know the deepest depths of joy. How true! This has been the most devastating experience of my life, but the joy I now feel in life, in even the smallest things, is so incredible and fulfilling. I could never imagined feeling such happiness over the events in life. This has been an awful week for us, Christopher still vomits every day, and is on a parade of medicines that make him cranky, we are on the phone with the insurance people everyday, and each day is a new challenge of blood levels, medications etc... We have never really slept since Oct. 17, 2003 when he was diagnosed. But as a parent do you ever really sleep again?

 

However........

 

What a week of joy this has been! We found out some wonderful friends are having twins! What a wonderful miracle, we are so excited, our hearts leaped with joy, double the love! I will be in my best friends wedding in two weeks, and have dreamed about the day when she will walk down the aisle, all I ever wanted was to see her have happiness.  I had sorority sisters come up and make me eat and drink and feel like I was in college again. Thank you for taking me back 10 years in time and taking care of me!

 

We have asked to become a part of a special baby's  life forever, and found out their are many joys awaiting another special couple. I felt my heart open up with love again, and have so much excitement at the wonderful things in this world that we are in, and will be apart of again one day. I tell Christopher everything that is going on, and I hope he understands all the things life has to offer. I tell him of a world outside his hospital room, and to keep fighting, one day he will experience it.  I just need to keep my heart open to the angels around me, and the goodness that permeates the sadness. I pray the angels find their way to his crib and keep him comforted from pain.

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To Christopher June 2004

Butterflies were released at his burial

 

 

Butterfly Memorial- Release of Butterflies .

“A butterfly lights beside us like a sunbeam. And for a brief moment its
glory and beauty belongs to the world. But then it flies once again, and
though we wish it could have stayed, we feel so lucky to have seen it.”

As you release this butterfly in honor of me,
Know that I’m with you and will always be.
Hold a hand, say a prayer,
Close your eyes and see me there.
Although you may feel a bit torn apart,
Please know that I’ll forever be in your heart.
Now fly away butterfly as high as you can go,
I’m right there with you more than you know.

Where I have gone I am not so small.
My soul is as wide as the world is tall.
I have gone to answer The call, the call
Of the one who takes care of us all.
Whenever you look, You will find me there-
In the heart of a rose, In the heart of a prayer.
On butterflies' wings, On wings of my own,
To you, I'm gone
But I'm never alone-
I'm over the moon.

I ... Am.... HOME !!!

-Author Unknown

 

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If tomorrow starts without me,

And I'm not there to see;

If the sun should rise and find your eyes all filled with tears for me;

I wish so much you wouldn't cry the way you did today,

While thinking of the many things,

we didn't get to say.

I know how much you love me,

As much as I love you.

And each time that you think of me,

I know you'll miss me too.

 

But when tomorrow starts without me,

Please try to understand,

That an angel came and called my name,

And took me by the hand.

And said my place was ready,

In heaven far above,

And that I'd have to leave behind,

All those I dearly love.

But as I turned to walk away,

A tear fell from my eye,

For all my life, I'd always thought,

I didn't want to die.

 

I had so much to live for,

So much left yet to do.

It seemed almost impossible,

That I was leaving you.

I thought of all the yesterdays,

The good ones and the bad,

I thought of all the love we shared,

And all the fun we had.

If I could relive yesterday,

Just even for a while,

I'd say good-bye and kiss you,

And maybe see you smile.

 

But then I fully realized,

That this could never be,

For emptiness and memories,

Would take the place of me.

And when I thought of worldly things,

I might miss come tomorrow,

I thought of you, and when I did,

My heart was filled with sorrow.

 

But when I walked through heaven's gates,

I felt so much at home.

When God looked down and smiled at me,

From His great golden throne,

He said "This is eternity,

And all I've promised you."

Today your life on earth is past,

But here life starts anew.

I promise no tomorrow,

But today will always last.

And since each day's the same way,

There's no longing for the past.

You have been so faithful,

So trusting and so true.

Though there were times you did some things, You knew you shouldn't do.

But you have been forgiven,

and now at last you're free.

So won't you come and take my hand,

and share my life with me?

 

So when tomorrow starts without me,

don't think we're far apart.

For every time you think of me,

I'm right here, in your heart.

 

**A poem from a friend

 

 

“I Have a Place in Heaven”

 

      Please don’t sing sad songs for me,

            Forget your grief and fears,

      For I am in a perfect place,

            Away from pain and tears…

            I’m far away from hunger

      And hurt and want and pride.

            I have a place in Heaven

                  With the Master at my side.

      My life on earth was very good,

            As earthly lives can go,

      But Paradise is so much more

            Than anyone can know…

      My heart is filled with happiness

            And sweet rejoicing, too.

      To walk with God is perfect peace,

                  A joy forever new.

 

This Poem was written for Christopher by Ralph Polk

 

“Even Butterflies”

    (For Paige Migliozzi)

 Even butterflies follow our God’s good bidding,

You may think it odd, but I’m not kidding,

When legions of Angels stand ready at His call,

Why wouldn’t He use His creation—large or small?

 

To soothe the pain of a believer’s broken heart,

By reminding them of a loved one, so much a part,

Of their lives, though short, when measured in time,

For God is our comforter with His Spirit sublime.

 

Why not use butterflies, a symbol of the Resurrection,

Thank God!  For a revelation of Divine perfection,

When one day no more illness, our bodies made whole,

As we live with God forever and never grow old.

 

Take heart; be brave and one day in our eternal home,

With family and friends and the Lord Jesus—not alone,

There we will worship God—overflowing joy will never end,

We will praise Him forever and ever, Amen.

 

                                   Ralph J. Polk, Jr.  7/23/04

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Grief is like a balance beam

 Grief+ Trying to Live Again = Balance Beam

 Grief is like a balance beam. 4 inches (10 cm)  across, and never ending. The “walk” across the balance beam is scary, it’s shaky. You are always on the edge and watching your footing. Somedays are OK, and you can jump and spin, but just as quickly you can fall on the balance beam and loose your footing. It’s always tricky footwork, everyday; there are many days I just don’t want to walk the balance beam anymore. Its hard, exhausting, and sad work.

 You put your best sad face forward, open your arms and walk slowly hoping for the best, if only you can make it another few inches. There have been times I have wanted to fall off the balance beam. Many, many days. I didn’t want anybody to pick me up. Just let me fall, so much less painful. But God and Christopher never let that happen. When my footing would get tricky, and I felt like I was loosing my grounding a friend would be there to hold my hand and steady my way. A college buddy would send me a care package, and encourage me to hold on, to keep walking the beam. An e-mail would arrive from a stranger telling me how much Christopher’s web site helped them. And one day Christopher decided to send us down his sister to love. So now I walk the beam with love for two children. So with much shakiness, much resilience, I have to keep walking.

 The balance beam never ends, ever. You may become more “stable”, more “constant” but the balance of life and grief never leaves us. The footwork is tricky everyday. But with people to continue to hold us up, we slowly continue to balance our way through.

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