I set my expectations low

Not of Joseph…no way.  I’ve had to deal with so much incompetence with insurance companies, medical supply companies and doctors’ office support staff since Joseph was born, you would think I would be used to it by now.

Let’s take my most recent exchange with Apria Enteral Nutrition.

I called Apria on 10/25 to place Joseph’s monthly nutrition supply refill order.  The woman I spoke to said that the supply order would be shipped out that day and I would receive it on 10/26.  The supplies never came on 10/26.  The woman did mention that it was possible the supplies would come on 10/29 but they didn’t come that day either.

I called again on 10/30 to check the status.  The woman on the phone told me that the supplies weren’t actually supposed to arrive until 11/1.  Either this lady was lying to me or the first woman I talked to was as to when the supplies would be delivered.  

I made another phone call AGAIN on 11/1 to find out the status of the supplies and the woman I talked to told me she couldn’t guarantee that the supplies would be delivered that day.  I asked for clarification on when they actually placed and shipped the order.  She told me the order wasn’t even placed until 10/30!!  I think I may have popped a blood vessel at that point, but since I was in the hallway at the office outside a meeting with a lot of people I tried to keep my composure.  Why on earth was the order not placed until 10/30 when I called on 10/25 and indicated we only had enough left to make it until 11/1?   Momma bear was pissed.  

I called again when I arrived home from work at 6 pm on 11/1 after I scoped out the front porch and didn’t find supplies.  I had to contact the after-hours line at this point. The agent Richard looked up UPS tracking numbers and said that 2 of the 5 boxes were in Chantilly on a truck and the other 3 were still at the New Stanton, PA distribution station.  Richard ensured me that the supplies would arrive by 7 pm today.  

My question to Richard was what was in those two boxes that were on the truck in Chantilly?  I explained it is Joseph’s FOOD (Peptamen Jr) that I needed.  I can deal with re-using syringes for another week if needed, but I can’t make up his special formula.  I am grateful that Richard was empathetic to the situation and seemed to be as concerned as me that the food had not arrived despite me ordering it a week ago.  He took my cell number and said he would call me back at 7 to see if the truck arrived.  

Being a project manager, I asked him for contingency plans in the event UPS didn't make it today. What was the soonest the local branch could bring over a few days supply of food the next day, and did they even stock Peptamen Jr?  Richard indicated he would check the inventory of the local branch and be ready with an answer when he called at 7.

Trying to keep my cool and mentally trying to prepare for a fiasco and keeping in mind that I need to stay in control of my emotions, I went to my bedroom to change out of work clothes and get ready for a workout with my trainer in 30 minutes.  While changing I looked out my closet window and saw what looked to be a UPS truck driving down the road.  I dashed downstairs and out the front door to see where the truck was going.  He went over to the cul de sac next to our house.  I stood there and watched him and finally saw him drive over to my house and pull into the driveway.  FINALLY!  One of the boxes looked like they could contain formula, and sure enough…2 of the 5 cases of Joseph’s formula were in there.  That is plenty enough to get us through the weekend and for a few weeks.  That SHOULD be plenty of time for the rest of the boxes to make their way here from New Stanton.

This is only a small glimpse into the ineptitude that I deal with on a constant basis.  I’ve learned to set my expectations extremely low and sometimes people meet them, most of the time they don’t.

By the way, Richard did call back about 20 minutes to 7, after the supplies were dropped off, he was watching the UPS tracking tickets and saw they were marked as delivered on the porch. 

What are you doing for summer vacation?

That’s a question that I dread after having a child with severe disabilities.  I see pictures people post of their families at the beach, stating how relaxing it was chilling all day in the sand and surf, playing corn hole, riding bikes, boats, water skiing, you name it.  I can only imagine how much different those families' lives are when they go on vacation as compared to when my family goes on vacation. 

Why do you ask?  Well, I still haven’t figured out how to get my son ON an airplane to reach a destination.  The few airlines I contacted for flights to Orlando told me I would have to transfer Joseph out of his wheelchair and into the plane seat.  After explaining that he cannot hold himself up and needs full support, they explained to me that I could just buy 3 seats on the plane and lay him down on the seats, that would be acceptable. 

Acceptable to who?  The airlines that get the extra cash for the additional seats?  Or my son who can’t lay flat because of his severe gastro esophageal reflux?  Why can’t the airlines have wheelchair tie downs like buses and vans so he can stay in his customized seating made for his wheelchair?  I know it’s because they would lose money on the seats around the tie downs that they would have to remove to make this accommodation.  The airlines also suggested I could bring along a car seat and transfer my 63 pound son into that, and store his wheelchair in the cargo area.  That’s another brilliant solution. Along with the cases of formula, syringes, tubes, diapers and other supplies Joseph needs on a daily basis to survive, I’d also have to tote along a 40 pound car seat with us.

Then once we get off the plane and to our destination, I have to worry about finding a wheelchair accessible van to transport my family at our location.  I’m sure there are companies that do provide such rentals, but what about all the luggage and cargo we carry with us?  Where does that go?  And then I have to have a vacation rental that is wheelchair accessible….it goes on and on.

You might wonder why I have so much “stuff” to bring along with us.  Joseph is tube fed, which means he has supplies to administer his meals that have to go along with us.   He “eats” 4-8 ounce cans of Peptamen junior per day, times X number of days, so that gets pretty bulky and heavy.  Do I have to pay extra fees to bring that on the plane with us?  Probably.  Then we have one 60 cc syringe per feeding to actually get that food into his belly.  That takes up room.  Diapers, wipes, clothes, braces for his arms take up more room.

Joseph also needs to weight bear daily to promote bone formation and to stretch his legs.  To do that we have to either bring a stander (not likely, its’ too big), or a gait trainer (more likely, but still big).  Where does all this stuff go in addition to the normal clothes and beach gear a family needs for vacation?  Joseph also needs a bath chair to sit in when he gets bathed.  That’s not a light or small piece of equipment either.

So you can see that planning a vacation on top of the normal logistics is just a nightmare at times.  I haven’t even talked about all his medications that we need to bring along with us.  This is a big reason I try to find places we can drive to in a few hours, or until last year, in a day.  But we are limited to how many people can fit in our van because the wheelchair takes up so much room.

Those who can afford to go on family vacations are fortunate.  Those who can go on vacations with a child with severe disabilities are some pretty amazing and fortunate people in my book. 

There’s nothing that needs fixed here

Though out the years of being the mom of a son with severe disabilities, I have encountered all kinds of people and reactions to Joseph.  There are mainly three different types of reactions I’ve observed.  First, there’s the group of people who look at me sadly and say “what’s wrong with your son?”, followed by a frown and “Poor thing.”  After my blood stops boiling and I respond that there’s nothing wrong with him, they walk away with a look of pity on their faces.

Second, there’s the group of people who are trying to make themselves better by not being able to accept the differences in others who will say, “May I pray for Joseph?”  Well, if it makes you feel better.  Then they go into a chat where they pray to a god to “Fix” my son….which just pisses me off even more.  There’s nothing wrong with Joseph, nothing that needs fixed.  Joseph only knows one life and that’s the one into which he was born.  As shitty and traumatic as it was, Joseph doesn’t remember what happened to him during labor and delivery, and he knows no other life.  If someone wants to make their self feel better by praying for my son or saying “poor thing”, by all means do so, but don’t put on a show for others and think there’s something that needs fixed.

Third, there’s the group of people who treat my son like humans should be treated.  Those are the people who ask me what his name is, what toys he likes, what kind of music he likes.  They are usually the same people who not stare at Joseph like he’s a monster or a freak and will smile when they see his handsome face.  They look past any outright obvious differences, because, guess what?  They DON’T MATTER! 

Joseph is an amazing little boy, handsome as can be, usually happy (which is more than I can say about most people WITHOUT any disability).  He sings, he laughs, he gets mad.  He loves to cuddle, he loves loud noise and music.   He loves warm water and swinging on a swing.  Did I mention he loves to cuddle?  He loves to go for walks and feel the breeze in his face, he loves rough housing and playing with his amazing little sister Sarah.

Joseph is an 8 year old boy, individual as different as every other 8 year old boy on this planet

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.