If you’re a parent of a special needs child

 What I would tell you….

I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.

I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.

I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.

I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.

If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.

I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.

I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.

I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.

I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.

I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.

I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.

I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.

I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.

I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.

I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.

I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.

I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.

I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.

I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.

But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.

I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.

Julie Keon
June 29th 2011

Julie Keon’s website is  here

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Our daughter Angie, posted a link to that letter tonight on facebook.  She and her husband Matt are the parents of two beautiful children.  Their youngest Rigg is a special needs child.

Driving Mr Rigg

I am Ostfriesland

I never  thought much about my  Low German roots until a few years ago when a friend of mine (who happens to be from Germany) explained to me the distinction between High  and Low German ( Plattdüütsch)

High German is the language of today, spoken by pretty much anyone who says they are German.    Low German   (depending on who you talk to)  would be considered  slang,  spoken by the  uncultured, back woods poor peasant types).  My Grandpa (Opa) came from Low German stock, where as  Grandma (Oma) came from the city, was  more refined and spoke both.

There should be no shame in having  Low German roots but just between me and you, ever since hearing the distinction, I’ve  felt just a wee bit second rate….until this week.

      I’d  heard growing up  that my ancestors came from the Northern part of Germany called “Ostfriesland” (pronouned  Aush-Freeze-land)   ( or the Freeland).   This week I’ve done some reading…

It seems that way back in the time of the Roman empire,  the people of Northern Germany lived in freedom and did not want to submit themselves to the bully called Rome. The area they lived in was in fact called ”The Free lands”     Rome decided to conquer these farmers,  instead, they (the Romans)  got their butts kicked in the  Battle of the Teutoburg Forest  (A.D.9)   The peasants knew there would be hell to pay  and there was.  It resulted in 7 years of bloody conflict, but in the end, Rome never was able to completely subdue them.

I told my wife this morning, the Ostfrieslanders  were too busy fighting off Roman soldiers to care how many spoons you needed to formally set the table.       And yet, as I’ve read more about my ancestors this week,  I also learned they were not the brute savages you might think.  Taticus (Roman historian) mentions they were fiercely monogamous.

I say all of this to tell you, I embrace  the fact that there is “Freelander” blood coursing through my veins.  It gives me a rich heritage I didn’t realize I had.

If you want to know more…check out this link:

Ancient German people

(I reposted this one by request)  DM

the meaning of (my) life

He was standing on the tracks, listening to death’s locomotive whistle, and he was very clear about the important things in life……….

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I (DM)  want to introduce you to one of my mentors.. Morrie Swartz.

What follows  is an excerpt from a book of Morrie’s distilled wisdom.

“the first time I saw Morrie on Nightline, I wondered what regrets he had once he knew his death was imminent.  Did he lament lost friends?  Would have have done much differently?  Selfishly, I wondered if I were in his shoes, would I be consumed with sad thoughts of all that I had missed?  Would I regret the secrets I had kept hidden?

When I mentioned this to Morrie, he nodded, “It’s what everyone worries about isn’t it?  What if today were my last day, on earth?”  He studied my face, and perhaps he saw an ambivalence about my own choices, I had this vision of me keeling over at my desk one day, halfway through a story, my editors snatching the copy even as the medics carried my body away.

“Mitch?”  Morrie said.

I shook my head and said nothing.  But Morrie picked up on my hesitation.

“Mitch.” he said, “the culture doesn’t encourage you to think about such things until you’re about to die.  We’re so wrapped up with egotistical things, career, family, having enough money ,  meeting the mortgage, getting a new car, fixing the radiator when it breaks- we’re involved in trillions of little acts just to keep going.  So we don’t get into the habit of standing back and looking at our lives and saying, “Is this all?  Is this all I want?  Is something missing?”

He paused.

“You need someone to probe you in that direction.  It won’t just happen automatically.”

I knew what he was saying.  We all need teachers in our lives.

And mine was sitting in front of me.

Fine, I figured.  If I was to be the student, then I would be as good a student as I could be.

On the plane ride home that day, I made a small list on a yellow legal pad, issues and questions that we all grapple with, from happiness to agin to having children to death.  Of course, there were a million self-help books on these subjects, and plenty of cable TV shows, and $90 operhour consultation sessions.  America had become a Persian bazaar of self-help.

But there still seemed to be no clear answers.  Do you take care of others or take care of your “inner child”?  Return to traditional values or reject tradition as useless?  Seek success or seek simplicity?  Just Say No or Just Do It?

All I knew was this:  Morrie, my old professor, wasn’t in the self-help business.  He was standing on the tracks, listening to death’s locomotive whistle, and he was very clear about the important things in life.

I wanted that clarity.  Every confused and tortured soul I knew wanted that clarity.

“Ask me anything,”  Morrie always said.

So I wrote this list:

Death

Fear

Aging

Greed

Marriage

Family

Society

Forgiveness

A meaningful life

This list was in my bag when I returned to West Newton for the fourth time, a Tuesday in late August when the air-conditioning at the Logan Airport terminal was not working, and people fanning themselves and wiped sweat angrily from their foreheads, and every face I saw looked ready to kill someone.”

From the book Tuesdays with Morrie by Mitch Albom

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I (DM) love love love this book.  I remember as my grandma was getting older, she refused to have her will made out because somehow in her mind it might hasten her death or bring her bad luck.   My wife and I on the other hand love strolling through a local cemetery, looking at the old tombstones and learning  the stories of people buried there .   It comes down to perspective.

I think that’s one of the reasons I have enjoyed this book so much. It gives me added perspective on life.

I told someone yesterday I love being the age I am now….. 53 .

Inside I still feel like a 23 year old,  just now I have  30 years life experience under my belt…

what

a

rush!

Rereading this post I realized this is just a teaser to the subject at hand (the meaning of life).  Since I am not one to jam my “stuff” down anyone’s throat, I will stop  here.  If this is a topic you’re really hankering to find answers to, I’ll make two suggestions.

First,   get a copy of the book.  It will slake your thirst like nothing else.

Secondly, if you’d like my thoughts on a specific issue, ask your question and I will do my best to reply  in the comment threads.

DM

Roger and Elaine

 

Roger And Elaine

Let’s say a guy named Roger is attracted to a woman named Elaine.  He asks her out to a movie.  She accepts.  They have a pretty good time.  A few nights later he asks her out to dinner, and again they enjoy themselves.  They continue to see each other regularly, and after a while neither of them is seeing anyone else.  And then, one evening when they are driving home, a thought occurs to Elaine, and without really thinking, she says it aloud:  “Do you realise that, as of tonight, we’ve been seeing each other exactly six months?”   and then there is silence in the car.  To Elaine, it seems like a very loud silence.  She thinks to herself; Geez, I wonder if it bothers him that I said that.  Maybe he’s been feeling confined by our relationship;  maybe he thinks I’m trying to push him into some kind of obligation that he doesn’t want, or isn’t sure of.

And Roger is thinking:  Gosh Six months.

And Elaine is thinking:  But, hey, I’m not sure I want this kind of relationship either.  Sometimes I wish I had a little more space, so I’d have time to think about whether I really want us to keep going the way we are, moving steadily toward….I mean, where are we going?  Are we just going to keep seeing each other at this level of intimacy?  Are we headed toward marriage?  Toward children?  Toward a lifetime together?  Am I ready for that level of commitment?  Do I really know this person?

And Roger is thinking:  So that means it was…let’s see…it must have been February when we started going out, which was right after I had the car at the dealer’s which means…lemme check the odometer….Whoa!  I am way overdue for an oil change here.

And Elaine is thinking: He’s upset.  I can see it on his face.  Maybe I’m reading this completely wrong.  Maybe he wants more from our relationship, more intimacy, more commitment; maybe he has sensed, even before I sensed it…that I was feeling some reservations…Yes, I bet that’s it.  That’s why he is so reluctant to say anything about his own feelings.  He’s afraid of being rejected.

And Roger is thinking:  And I’m gonna have them look at the transmission again.  I don’t care what those morons say,  it’s still not shifting right.  And they better not try to blame it on the cold weather this time.  What cold weather?  It’s 87 degrees out, and this thing is shifting like a garbage truck, and I paid those incompetent thieves $600.

And Elaine is thinking:  He’s angry.  And I don’t blame him.  I’d be angry too.  I feel so guilty, putting him through this, but I can’t help the way I feel.  I’m just not sure.

And Roger is thinking:  They’ll probably say it’s only a 90 day warranty.  That’s exactly what they’re gonna say, the scumbags.

And Elaine is thinking:  Maybe I’m just too idealistic, waiting for a knight to come riding up on his white horse, when I’m sitting right next to a perfectly good person I enjoy being with, a person I truly do care about, a person who seems to truly care about me.  A person who is in pain because of my self-centered, school girl romantic fantasy.

And Roger is thinking:  Warranty?  They want a warranty?  I’ll give them a warranty!

“Roger,” Elaine says aloud.

“What?” says Roger, startled.

“Please don’t torture yourself like this,”she says, her eyes beginning to brim with tears.  Maybe I should never have….Oh my….I feel so…”(She breaks down, sobbing)

     “What?” says Roger

  “I’m such a fool,” Elaine sobs.  “I mean, I know there ‘s no knight.  I really know that.  It’s silly.  There’s no knight and there’s no horse.”

    “There’s no horse?” says Roger

“You think I’m a fool, don’t you.”   Elaine says.

     “No!”says Roger, glad to finally know the correct answer.

“It’s just that…It’s that I…I need some time,” Elaine says.  (There is a 15 second pause while Roger, thinking as fast as he can, tries to come up with a safe response.  Finally he comes up with one that he thinks might work)

“Yes,”he says.  (Elaine, deeply moved, touches his hand.)

     “Oh Roger, do you really feel that way?” she says.

      “What way?”  says Roger.

      “That way about time,” says Elaine.

“Oh,” says Roger. “Yes.”

     (Elaine turns to face him and gazes deeply into his eyes, causing him to become very nervous about what she might say next, especially if it involves a horse.)

At last she speaks: “Thank you, Roger.”  she says.

  “Thank you,” says Roger.

Roger then takes her home, and she lies on her bed, a conflicted, tortured soul, and weeps until dawn, whereas when Roger gets back to his place, he opens a bag of Doritos, turns on the TV, and immediately becomes deeply involved in a rerun of a tennis match between two Czechoslovakian’s  he never heard of.  A tiny voice in the far recesses  of his mind tells him that something major was going on back in the car, but he is pretty sure there is no way he would ever understand what, and so he figures it’s better if he doesn’t think about it.  (This is also Roger’s policy regarding world hunger)

The next day Elaine will call her closest friend, perhaps two of them, and they will talk about this situation for six straight hours.  In painstaking detail, they will analyze everything she said and everything he said, going over it time and time again, exploring every word, expression, and gesture for nuances of meaning, considering every possible ramification.  They will continue to discuss this subject, off and on, for weeks, maybe months, never reaching any definite conclusions, but never getting bored with it either.

Meanwhile, Roger, while playing racquetball one day with Norm, a mutual friend of his and Elaine’s will pause just before serving, frown, and say; “Norm, did Elaine ever own a horse?”

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    Footnote:  I  first heard this story at a men’s retreat .  Every so often it comes up again in a conversation with either one of my kids in the context of dating relationships or between my wife and I when we find ourselves not communicating clearly.  I’ll refer to either a garbage truck or something about a horse  

I posted this one a couple of years ago on the blog so it may be familiar to some of you long time readers.

Boundaries

      You can tell a lot about a  farmer by the condition of his fences.

 

Jim and Sally.

I love spending time with Jim, he makes me laugh.  Sally, on the other hand has an energy sucking black hole in her soul. A few years ago, we agreed to host a friend of theirs in our B and B suite.  Inviting Jim and Sally over for supper so they could spend some time here talking to their guest seemed like the right thing to do.  I point-blank said, they were more than welcome to come over but- it was an adult only invitation.  It wouldn’t work to include their kids.

In the past when they’ve brought their children, the kids would run wild.  Their boys would be snooping through our kids rooms, snooping through our outbuildings, etc. etc.

Would you believe Sally brought 2 kids along  that night anyway.

And she  wonders why they don’t get more invitations to do things as a couple.

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Update 8/2/2011

I originally started writing this post July of 2010 but never published it.  It caught my eye tonight because Sally dropped by our place  this past Monday about 6 PM.  I haven’t seen her in 2  years.  Her and Jim have been separated now for a year.

As she sat at the kitchen table  this past Monday talking with my wife, the” monologue”   quickly turned to Jim and what kind of rat he was.    I tried not to pay attention, but after about 10 minutes of it, I came back into the kitchen and said,

“Here’s the deal…when I get together with Jim I won’t let him talk negative about you because you are not here to give your side of the situation…and so, the same goes for you….I know you’re hurting, but this is not the place to unload about Jim.  We’re not trained marriage counselors and I don’t want my mind poisoned toward either one of you.   That’s just the way it is.”

She said, “OK, OK…and within 5 minutes was right back at it.  

I stopped her and reminded her of what I just said…”Talk about anything else you want to talk about, but don’t talk negatively about Jim.”

15 minutes later, she was back at it again.  Again, I stopped her and repeated myself.  I don’t want to hear it.”

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There was a part of me that felt sorry for Sally.

She is definitely hurting.

She is also a master at being passive aggressive.

She was still talking when I went to bed.

I finally called our home phone from my cell phone upstairs. 

My wife answered the phone.

I told her  I needed to talk with her.

My wife was stuck and didn’t know what to do.

My wife didn’t  want to be rude.

I on the other hand have no trouble encouraging someone to leave if it’s after 9 PM on a work night

I call it setting boundaries.

g-nite