I Know Different

The following is circulating among my circle of special moms and dads right now, and I wanted to share with the rest of you.  This is beautiful.

I still haven’t heard Joseph say “mommy” as you and I normally hear it, but I know he has said it…you know?  

Below it is the very first picture I ever saw of Joseph while I was in the recovery room after my emergency c-section with him.  Sorry for the quality but it’s a scan of a Polaroid the case manager took for me.

By Tricia Proefrock

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know.

Return to Holland

Here is a follow up to Welcome to Holland.  As Joseph nears his first decade, this is close home.

"Welcome to Holland (Part 2)" by Anonymous

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. In those 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!

Wait, this isn't what I signed up for!

As a parent of a child with special needs, you come across all types of advice through the years.  Some good, some bad, some worth passing on, some not worth a second thought.  You also form a special bond and connection with other parents of children with special needs and we form informal support groups. 

After Joseph was born I went through so many emotions.  Why did this happen?  This is not fair!  This isn’t what I signed up for!  It hurt to watch my friends’ kids who were Joseph’s age running around with their friends, playing soccer, going to boy scouts or a baseball game.  I would sit there and watch with hurt and jealously as they had sleepovers for their kids knowing Joseph would never have one with his friends.   There were plenty more but you get the point.  These days these types of things don’t upset me as much as they do because I’ve come to understand that Joseph is a very happy, loved, and adored little boy.  He doesn’t know any different.  I’M the one who has the problem, not him.  ;-)  

My very first “support group” was a Yahoo Group (yes, I said Yahoo) for children with HIE-Hypoxic Ischemic Encephalopathy.  That was 8 years ago and I am still a member.  In the beginning I asked all sorts of questions and solicited advice, and the group lovingly gave it.  There are veterans in the group—their babies are teenagers or young adults and they’ve experienced most of the trials and tribulations that most of us new parents were just faced with.  I’ve “met” some really amazing people through the years, from California to Virginia, to Pennsylvania, and even Australia and Canada.  Joseph and I have met a LOT of his online friends in person, and those in person introductions and conversations have grown into invaluable friendships and bonds that will last for a lifetime.   By the way, I now consider myself a veteran. 

One story passed along from the “veterans” to the “rookies” is the story of Welcome to Holland.  It is an attempt to help these new parents and others understand the thinking and the world of parents of special needs children.  It a great analogy and I hope you enjoy.  I’ve seen the tulips and Rembrandts, and they are breathtaking.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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 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 guide books. 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.

Yes, I do think about this. Often

As a parent, one thing you never want to think about is your child’s death.  When you have a child with complex medical issues and severe involvement, I think you would think about it as much as I do.  I’m sure parents with children without special needs do think about it at some point, but I am reminded of the possibility that Joseph could die every single day.

Seeing a child die is one of the most horrific memories I will ever have.  When my ex-husband Todd and I were dating, his older brother and sister in law had their first baby, Rayleen.  Rayleen was born with a heart defect, an ASD, an atrial septal defect.  Surgery was required to fix the ASD, so after she grew a few months (she was a few months premature), she underwent surgery at WVU Hospital in Morgantown, WV.  The surgery went well, but while she was in the Intensive Care Unit recovering, Rayleen caught a staph infection.  Rayleen fought for her life but lost her battle in the hospital.  Her little body was broken and couldn’t take it anymore--system after system gave up. Her kidneys failed, her liver was failing, her heart.   Todd and I were in the hospital with her parents when they had to make the difficult decision to take precious Rayleen off of life support.  We were able to hold her and kiss and hug her good bye.  The nurses and doctors came in and started taking out her breathing tubes.  I’ll never forget that moment.  For whatever reason, blood started spurting out of her nose and mouth and her parents and everyone in the room started sobbing.  Todd and I left the room so her parents could say good bye to their baby in private.  

When Joseph was in the Neonatal Intensive Care Unit at Fairfax Hospital, we came to know the other families in Room 3.  We didn’t know names, but we knew their faces.  We were always checking every morning when we went to visit Joseph to see which baby went home, which baby didn’t make it.  Across from Joseph’s isolette was a little pre-mature baby who kept having little TIA’s (mini strokes).  The family told us the doctors said their son was in pain every time he had a TIA…and he was having hundreds of them at a time.  That family had to make the decision to take their son off of life support.  We were there when they had to sign the papers, we hugged them, said goodbye to their baby through his isolette, and they wheeled them all to a private room to say their good byes and take their son off of life support.  He died less than an hour later.

Within the first few days of Joseph being transferred to the NICU at Fairfax Hospital, one of his regular nurses, Mary, who we came to love, asked if we had considered signing DNR papers for Joseph.  Joseph actually had a PDA when he was born, and I was having flashbacks to Rayleen dying.   I was actually pissed off she asked me in the first place, but I understand why she did.  At the time, no one knew any certainty about Joseph’s prognosis.  To most everyone it was terrible and no one expected him to live.  He had liver failure, kidney failure, along with his severe brain damage.  Eventually Joseph’s liver and kidneys healed and his PDA eventually closed when he was about a year and a half old.   

As a side note, one thing Todd and I noticed when Joseph was born was we were never congratulated by any of the doctors or nurses at Fair Oaks Hospital or Fairfax Hospital on the birth of our son, with one exception.  Robin Baker, MD was the only doctor, specialist, nurse, etc. who shook Todd’s hand and said “Congratulations” to both of us.  He asked me after Day 7, “Have you held your son yet?”  I said choking back tears, “No.”  “We need to fix that don’t we?” Dr. Baker said.  The next thing I knew, he had three nurses come over to the isolette, pick Joseph up with all his wires and probes, and I was finally able to hold my baby.

From seeing Rayleen pass away, to the little baby across the NICU room 3, I knew that the reality that my son could die was not some far off impossibility.  What is going to kill Joseph is pneumonia, most likely aspiration pneumonia.  He’s already had it once when he was about 5 years old.  Since Joseph has such severe Cerebral Palsy, he cannot handle his own secretions very well.  To add to his poor swallow ability, he has a hiatal hernia which allows stomach to push up into his esophagus, and stomach contents are at risk of entering his trachea and lungs.  He did undergo two painful surgeries to fix the hiatal hernia, but Joseph managed to retch both of them apart…and I won’t put his little body through another one to attempt to fix it a third time. 

So I’ve come full circle with this, sorry it took me so long to get here.  I kiss Joseph good night and tell him I love him every night he’s with me (as I do with his sister Sarah), knowing that he could possibly die if he aspirates his saliva or chokes at night in the case I can’t hear him.  When I’m out for a run the thoughts go through my head of having to plan a funeral for my son.  Where would we have it?  What songs would we sing?  What would we do to honor his memory?  I’ve thought about the specific songs, his favorite being “You are My Sunshine”, and doing a balloon release in his honor.  I’ll hear a song on my iTunes list and think, “Yep, that’s another one for J.”  It might seem morbid, but it’s my reality.  I try not to live in too much of a bubble when it comes to Joseph and his life and death, and I’m not afraid to talk to anyone about it anymore.  7 years ago I probably would have shied away from the topic, but now I know better.

I always give my kids a hug and a kiss and tell them I love them before any of us leaves the house or parts each others' company.  In fact, my favorite thing to do before I go to bed is sneak quietly in their room, kiss them on the cheek and whisper in their ears, "Mommy loves you."  And with that, I have a few sweethearts to go visit.