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« Kangaroo Care | Main | Mama Kangaroo »

June 10, 2009

Comments

oh danny.... what a day! we're thinking of you and kendall and charlie....and in a way i'm glad you could let out that scream! love,m

Dear Danny,

I'm so glad that your blog affords you the opportunity to express your anxiety and fears. I'm a little like you--I don't like change if there's a chance of unhappiness. Of course there are many challenges to come, but I know that you and Kendall will meet them with great love in your hearts for this special little boy. I hope that Kendall is able to express, and cope with, her anxieties as well.

Love,
Cynthia

You and Kendall have been through so much, and Charlie has bounced back from so much, that I think many of us are praying for a miracle...not so much to deny any realities that you might be facing, but because in the scheme of life and love, it just seems that the Millers deserve a miracle or two.

Perhaps the miracle is that Charlie, all 3 pounds of him, is a fighter. Perhaps it's in the care that he receives, or the love he feels. But I also hope beyond hope that whatever challenges Charlie might face in the future are not difficult -- I hope that whatever they are, they allow him to enjoy this precious life without additional pain or trauma.

It is so early, and the anxiety of knowing that there's damage but not knowing the extent, is something most of us can't even imagine. What you and Kendall have gone through in a mere month and a half is more emotionally wrenching than some people will experience in a lifetime.

I look at your family from this distance and see that it's your love for each other that is seeing you through this, and it feels powerful even from here. And maybe that can't smooth the scar tissue, or remove the fear, but from 2000 miles away, it compels me to ask God several times a day to give your family some relief and joy.

I don't have a lot to offer here, but I'll just give you what I can.

In 1976 my mother gave birth to my brother, Jeffrey. He had Down Syndrome...which, even in 1976 the nurses and doctors suggested she institutionalize. The angina this caused my mother I have never known - she always looks back with happiness at her decision - not anger at the doctors. My father wasn't exactly the sort you'd call "dependable" and would prove this over & over again as the years progressed (as well as bringing my sister along to the world) so for her to take on not only the doctors, but, most likely, my father, took a lot of courage on her part I would imagine. Especially considering she had just given birth (and all the emotions that brings up...).

Luckily for Jeffrey he was born right at the time that many programs opened up for special needs children and the stigma of institutionalizing was beginning to fade. He flourished and led an extraordinary life for 15 years before his unfortunate and extremely untimely death.

What my point is, and I apologize for rambling here, is that you are handling this very well it seems. You and your wife (and your family around you) are going through an awful lot and you deserve special care right now. Everything you're experiencing emotionally is understandable but your embracing of the unknown is particularly commendable.

More than anything I wish a typical, normal, healthy baby upon you and your wife. But it is heartening to hear that you are both willing, if perhaps not fully prepared (who could be?) to take on whatever challenges you may be met with down the line. It's okay to be scared. It's okay to feel apprehensive. You're parents and you're doing a really good job right now.

Sorry - it's 3 AM here and I'm really out of it - was woken up by my little bundle of joy Pedro - a 13 year old chihuahua who can no longer jump onto the bed and woke me up to help him up.

Dealing with the unknown is always difficult. I think people hold back from expressing doubts for fear of adding to the anxiety. As cliche as it may be, "one day at a time" is the only answer here.

Continuing to keep all of you in my thoughts,

Danny, I firmly believe in planning for every contingency. Not that these plans actually prepare you for anything, but just maybe thinking about what you will do as Charlie is growing up to manage and possibly treat any disabilities that arise isn't really such a bad idea. It doesn't mean that you have given up hope...actually there are many hopeful stories that don't always end with "and he/she is a perfectly normal healthy child." What is normal, anyway?

Danny and Kendall, all I know to do is nod. We went through this too, mourning the ordinary we felt entitled to. We didn't get very far, or rather Liam didn't, having had so many other complications. So I'm left feeling like we balked.

There will be a time - soon, probably, out of necessity - when you'll find your feet with this new reality. You'll hit a rhythm as you would with any baby. You'll figure out how to meet Charlie's needs, and you'll be able to do it blindfolded with one arm tied (at 3 AM). You'll discover how he makes you laugh and feel joyous. He'll bust out the edges of words like 'gutsy' and 'ability'. He'll change everything for you.

He already has, hasn't he? As did Oliver. I know it's not what you expected, and I know how scary it can be. But you will all find your feet. I know you will.
So much love to you both.
xo

Danny and Kendall,

A child and family that is going through what you all are is not easy and at times not pretty--it isn't the picture we thought we would ever have.--BUT the miracle is in the holding!--So hold him and each other lots--it's what makes the picture pretty again.
I am following you guys here--and thinking of you all much.
XXXS
Luanna

All I can say, Danny, is that this just sucks.
:( It's so incredibly unfair, it just makes me mad. Love you guys.

One more thing...continue to stay strong...

Danny, Breathe in, Breathe out, everything is, just as it is in the only moment we have, this one moment. In times of extreme stress and anxiety, I find the words of the master Thich Nhat Hanh to be incredibly helpful as he reminds me to live only in the present moment. As I practice this skill, my life becomes more manageable as I then stay out of future tripping more comfortably. Heartfully, Susie

OK, you're a worrier, I get that--I am too. BUT. Children are amazing. Children's brains are amazing. Yes, you have been on and are in for a wild ride. But brain pathways can be re-trained, re-routed. Children who have profound deficits at birth can learn, and succeed, and thrive. Heck, people can live with HALF a brain, and function well. He's your son. You love him. He'll be AMAZING and WONDERFUL--just like his parents and sister...

Dear Danny, Kendall, Leah and Charlie--

Ten years ago our daughter was born, to another mother, and given to us. She came after twenty years of longing, and in the preceding two months we'd had, among other things, to fill out a form listing all the birth defects, special needs, and challenges we would--and would not--be able to accept in our baby-to-be. These ranged from needing glasses or braces (which are hardly birth defects or even issues, for heaven's sake, but reality) to no arms and legs and so on. We were already in love with this baby sight unseen and said we could handle almost anything. And yet, I have to admit I was so grateful when she was born with nothing more serious than asthma and a speech problem. We all want our babies to be as whole and healthy as they can--life is tough enough under the best of terms.
But I am reminded, reading your lovely post, of my favorite book by Pearl S. Buck, "The Time is Noon." The woman's first child has been born body-beautiful and healthy, but his mind has never formed, something she is not aware of at first (Pearl herself experienced this with her daughter Carol and wrote a lovely book called "The Child Who Never Grew.") An elderly woman tells Joan to love Paul just as she is--something she already does, of course--and to remember that if Paul ever says "Mama" it will mean more than anything, because of the wait for it, that his first steps will be a triumph, and so on.
Whatever Charlie's issues, and they are certainly ahead of you, he has already shown the spirit and heart of a fighter--which he gets naturally from his parents. God is going to give him, and you, everything you need to cope day by day; don't forget that this help will come from the kindness of strangers, even (thanks, Blanche) and from angels unaware.
And every milestone he reaches will mean more to you than anything you ever dreamed. After all, he has his brother as his guardian angel, pulling for him....and all of us here.
Much love and prayers--
Beth

You will find love and support when you need it most, and you are not alone.

Dear Danny,

I didn't read all the comments that came before me. I just wanted to share a couple of thoughts.

Thanks for your full on humanity and honesty. Everything you say here is...well, pretty normal. I can't even imagine how I would be freaking if Charlie were my child.

What will be okay is that you all will find your way through this. A step at a time if need be. "Okay" doesn't mean slick and spotless and easy. "Okay" means the way will become clearer as more reveals itself.

Recently, someone shared a thought with me, that I pull up from time to time: "It doesn't matter how much you worry. Worry doesn't change the outcome."

Now, this hasn't stopped me from worrying completely. Worry is something that I do quite well; however, I am sometimes able to step back and realize that I am worrying about something that hasn't come to be, and instead, I can think about the possibilities, gather my resources, and do some creative problem solving. In other words, I can change the channel a bit from worry to resource gathering and planning.

This doesn't change the seriousness of what we face. Sometimes, though, it can make things calmer inside. Please know, I am speaking about how this works for me. If it is helpful to you, I am glad. I do not presume to know what you should do.

You've got a long road ahead, I know. Thanks for letting us in and allowing us to support you all in the process.

Continued love and prayers, my friend.

I'm sure I'm just repeating what everyone else has already said, but I'm one of those people who needs to know. Even if it's bad, I can start working on it, once I know exactly what an issue is. It's hell for me not to be sure, because I can sit around forever creating bizarre scenarios in my head. I wish there was some way they could just tell you what you'll be facing in the years to come.

...But since they cant, I'm sure you and your family will be able to deal with it. You will laugh and cry and love your way through Charlie's life together, just like you've been doing. No matter what Charlie's physical complications are, he will always have you guys there for support and love and most importantly, song and dance.

Excellent post. Although the situations aren't very alike, here's my experience: People frequently (unless they've been through something similar) have no idea what to say and feel this weird need to somehow fix things by staying relentlessly, annoyingly positive. They mean well, of course, but it becomes a problem. My parents died within 8 weeks of each other last winter and people kept telling me that everything was going to be fine. Uh, no. Your parents are the only 2 sources of unconditional love you get and unless someone can resurrect 'em, this most assuredly is NOT fine. Don't let anyone deny you what you're feeling, no matter what it is (I can't help but think that your experience scares others as well i.e. what if it happens to me?). And you'll soon get tired of accepting condolences and being asked how you feel. "I don't want to talk about it" is a perfectly legitimate answer. I have a fairly dark sense of humor to begin with so this whole experience lead to some horrible jokes (when the funeral home people showed up to pick my mom's body up he said, "This last name sounds familiar". I replied, "Yeah, you guys serviced my dad 8 weeks ago. Do you have a discount punch card or anything?").

You guys, as ever, are in my thoughts.

Ever since I started my Feldenkrais Method Training program almost two years years ago, my husband says, you think everything can be helped by Feldenkrais Method. Don't forget the name..you can check it out online... the method devised by Moshe Feldenkrais and helpful for retraining the brain. It can turn out to be helpful for Chaim Charlie. No one knows what will happen tomorrow...the present is our present. The only other thing I know for sure ...love is the answer.Keep on holding on...we all send you our unconditional love to your wonderful extended family. Be and live strong...you're being supported by a lot of people. Give Charlie big hugs for all of us.

Danny,

I am sorry that you had to write this beautiful and heart-wrenching post. But I understand well the need to balance "hope for the best" with the pressure of relentless optimism and assertions that it will all "be all right."

Mourning, with your wife, Kendall--whose pregnancy went from normal to a medical emergency in the blink of an eye--and your teenage daughter, Leah, a son and baby brother, Oliver, who has died, while standing vigil at the bedside of a second son and baby brother, Charlie, who is struggling simply to stabilize and draw breath from one moment to the next, simultaneously surrounded by innumerable representatives of the medical community upon whom you must depend for compassion, information, finely calibrated medical expertise, and moral support, when you are riding a roller coaster of extreme emotions--probably feeling as if all of your nerve endings have been exposed to unremitting stimuli 24/7 for the past 6 weeks+--and experiencing profound emotional and physical fatigue is traumatic, stressful, and demanding upon your hearts and minds beyond anything that I have encountered in my own personal experience.

I can only bear witness via your blog posts, in empathy and friendship, as you all attend to this sacred duty with which you have been entrusted by life. While you may have "screamed like a little girl and nearly fainted" in the CT room, I'm sure that the level of your grief and worry are Wailing Wall material.

I do know that there is no way out but through--day by day, step by step, crisis by crisis. Take as good care of yourselves as you can under the circumstances and know that I send you my ardent wishes for sheer, unadulterated good luck and an easing of the extremity of the situation as the days continue to go by.

I respect and admire you, your wife, and your daughter for trying to balance, as best you can, on the tightrope between denial and catastrophe, and I deeply regret that it is necessary.

Danny,
If I were there, I would sit with you, listen, and show my support with a hug. Consider this a virtual hug.

Love,
Julie

Danny,

The Feldenkrais Method. Practitioners are "brain whisperers." Some of them specialize in working with kids, with, e.g. CP (not saying that's Charlie at all, just showing you the range of problems they work with are from very subtle to very severe and everything in between). Feldenkrais was a Jew from the Pale who walked to Palestine when he was 13, and ended up working as a scientist in Paris with the Curies (where he also studied with Jigoro Kano and became the first western Judo black belt) and in London on military stuff during WWII. Back in Israel after the war, he began exploring by himself and eventually devised a genius method of accessing dormant human potential that is used by Yo-yo Ma, Rene Russo, various elite athletes, as well as people with every kind of nervous system difficulty and disability. The practitioners he trained know how to find and evoke the sleeping potential in any brain, intact (and just plain underperforming as we all do) or not. It's a totally gentle method, respectful of the autonomy of the "student" (it's considered teaching, not therapy), FUN for kids (and turns adults back into kids for the duration of a lesson!), and profoundly interactive/communicative. I will help you find someone experienced and gifted with kids and she or he can be a part of Charlie's life almost from the beginning, and can teach you, also, things to do with him. In this way you may be able to bypass some of the standard effects of taking damage too much to heart, and enable Charlie to get way more from the brain he has. Something we can all use.

Danny,

Who knows what will happen with Charlie, or what difficulties he might face in the future. But no matter what handicaps he might or might not have, he also has a huge, huge, asset and advantage in life: two great parents and a fantastic big sister who will always be there to help him through. You guys are an amazing family, and Charlie has found himself in the right place to get the help and love to allow him to lead an amazing life.

Stay strong, but don't fool yourself into thinking that that means never breaking down. You've been through a lot and are facing a lot more, but Charlie picked the right people to see him through.

I've always thought there's a good reason people have excelled at denial - it gets them through the day-to-day. You should not feel bad about expunging negative thoughts from your head. And until you learn the extent of damage to little Charlie's grey matter all you can do is continue to love him and hold him as much as you can. And when you do learn the extent of damage, over the course of years, you will adapt, also with love, because it's really all you can do. It feels weird to say these things to a total stranger, but knowing you from your posts over the last 6 weeks, I just think you will make the right choices and although things will not be "normal" they will be ok. That's not to say anything will be easy. I guess another way of saying it is, dealing with the unknown is impossible. When it becomes known, you will deal. Of course, that's easy to say, but man can those unknowns keep you up at night.


Where there is life there is hope. I pray for miracles and know they happen every day. Charles being here is a miracle and his strength and will do live an inspiration.

I found this a while back at a teacher conference and thought it might be helpful to see someone else's perspective on raising a special needs child.
_________

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 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.

Danny,

I feel like you have so many comments here that make sense about your feelings, about coping, about hope, about denial, about anxiety, about stress, about love, about positive action, that I have very little to contribute in a comment format anyway.

There are so many out there who share the struggles of defining what happiness is, and not measure to the standards of what the Hollywood picture or narratives have engrained into our common culture, thus distorting some of our feelings of "normalcy".

This is probably why I have always preferred the kind of messy narrative that can be found in the books of Moses rather than in the Disney dramas, because the stories there look more like what we can be all going through, some at times, some all the times, one day at a time, with roller-coasters of mixed feelings ranging from depression to transformation, from anger to acceptance, from denial to action and harmony.

Anything that will help you go through is a positive thing, whether it be writing blogposts that may elicit unwanted comments because the response is not bringing a different reality, and the commenter long gone to doing something else than experiencing the pain that you are still living in; or whether it be something else, because everyone can deal with resilience their own ways, and there is not *one* only way.

Some people can't cope. They flee, they go into numbing behaviors and never come back to life, to action, to sharing with others, to creating something that can touch another human being, or into destructive behaviors altogether, violence that shows they didn't manage to turn their anger and anxiety into art and crafts.

When one speaks of a miracle, I see the miracle in the person who has been able to turn her anxiety and anger into love and faith, because it could have turned the other way round, and this would have been a catastrophe.

We have choices. Between life and death. We choose life because this is what we have to do even in the face of the loss.

Danny, I think your fluctuating emotions (and those of your readers) are just part of our human condition. We vacillate between hope and despair. I do it, and I don't have a child who is struggling with health. We want to hold on to optimism because the alternative is too unbearable. As a stranger to you, a mere blog reader, I don't know what to say to you and Kendall about this uphill battle you're facing and will continue to face. Other than it seems to me that you have so many people who love you and Charlie and who will bear the load with you. And short of having a completely healthy Charlie, what more can we ask for in life? I'm thinking of you and your family as you go through this.

What you say is so true Danny....and I am glad you have each other to keep you both in a kind of reality-check...Denial is a very useful thing sometimes, but trying to deal with other things yet unknown, is so important too.....Some kind of balance---if possible---But, if it isn't possible, that's okay, too.
As to people being so ready to NEED YOU to be feeling better about whatever---as you mentioned about this person who has just lost a child---I understand this too. I've just had a tragic loss, and I know people want me to feel "better", but please...let me face what has happened and grieve and understand it will take as long as it takes....One already feels alone in these terrible losses and the best anyone can do is just "be there" and let you feel watever it is you need to feel.
My prayers are with you and Kendall and Charlie....((((((((HUGS)))))))) to you all.

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