What about our well kids?

If you have a hurt child that has well siblings it is inevitable that the hurt child will get more attention at times, if not ALL the time, than your well kids.  That's a reality.  But of course there are healthy ways to do that and unhealthy ways to do that.  As parents, we often have to deal with guilt over this issue.  It's a guilt that can make us feel like we (as well as our children) are losing no matter what we do.  But there's good news too...

Having a hurt brother or sister can actually be a really amazing opportunity for our well kids.  Some of the most kind-hearted and well-rounded adults that I know are the siblings of a hurt brother or sister.  I had friends who had a hurt sibling long before I had a hurt child of my own and seeing their response to their brother or sister has done a lot to ease my anxiety about my own kids. 

That doesn't mean we don't need to pay attention to the needs of ALL of our kids but it does mean that having a hurt sibling doesn't have to be the end of the world for our well kids.  In fact, it may just turn out to be one of the greatest blessings of their lives! 

I hope the article below, written by Janet Doman, is an encouragement to you much like it has been to our family.

My Favorite Question   By Janet Doman

When families come here for the first time with their brain-injured kids they spend a week learning intensively about their own child and about the growth and development of the human brain.

It is an exciting, exhilarating and amazing week for the families and for the staff.

It is also an exhausting week.

At the very end of that week each family meets with a director who checks each part of the program and answers any final questions a family may have. Often this meeting takes place at midnight or later.

Last week I was meeting with one of our new Italian families and it was well past midnight. We went over the program and when the family had finished asking their questions they said they had only one final question, but it wasn't about their brain-injured daughter, it was about their well one. "What shall we say to our well fourteen-year-old about the program?" they asked.

I smiled a big, broad smile and sat back. They had asked my favorite question.

What shall you say to your well daughter? Ask her how many people get to jump into the ocean and pull out a drowning child? How do you think a human being feels about herself when she does such a thing? How do you think she feels about life? Don't you wish every child had an opportunity to help save another child? What a magnificent experience for the well child, not to mention the hurt one!

What shall you say to your well daughter?

Tell her that for over thirty years the well brothers and sisters of our brain-injured kids, aged three to twenty-three, have been fighting the battle to fix their hurt brothers and sisters right beside Mom and Dad.

Smart mothers and fathers have always recognized that the program is a family program. It is not only to save the hurt child, but to save all the luckier ones who didn't get the cord wrapped around their necks in utero, who didn't get hit by a car. Our mothers and fathers have respected and honored all their children enough to include them. Why should they be deprived of the glory of helping to get a blind kid to see, or a deaf kid to hear, or a paralyzed kid to move?

What shall you say to your well daughter? Tell her she just graduated from being a kid to being an adult. Tell her she is second in command to you. Tell her that her family is fighting a real battle where a real human life is at stake. Tell her that your family is going to be the best fighting team in the whole world.

Tell her you need her.

What shall you say to your well daughter? Teach her how to pattern by saying, "This is how you turn the head." And if you teach her well, she will teach her friends how to turn the head too. And the ones who come back to help again will be her true friends, and the ones who'd rather not, she will understand were not real friends at all.

Ask her to help you.

And when you do, do you know what she will say?

I do.

I believe she will say what I said when I was first asked to pattern one of our very hurt kids. I was nine years old and our in-patient clinic did not have enough patterners, so they asked me to turn the head.

I was stunned.

"Who in the history of the world ever got to help fix a brain-injured child at age nine?" I wondered.

What will she say when you tell her she's on the team? She will know it is the most important thing that has ever happened to her, and maybe ever will happen to her, and she'll say, "I thought you'd never ask."

An oldie, but a goodie...

"Welcome to Holland"
By Emily Perl Kingsley, 1987. 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.

The Noise

It’s a noise that I hear every time I wake up during the night and again when I awake in the morning.  It’s not a particularly disturbing noise; in fact, on some levels it’s kind of soothing.  It’s what it reminds me of that bugs me.  The noise is a constant reminder of a reality that makes it difficult to just drift back into peaceful sleep.  What is it?  It’s the noise made by the machine on the other side of the wall, in my daughter’s bedroom.  It’s a machine that runs all night long which helps my daughter breathe more effectively.  It’s neither complicated nor invasive.  It simply causes a vest that is wrapped around her to compress and release at the appropriate time and in the appropriate rhythm in order to cause her body to breathe deeply and regularly (things that are a challenge for her without the assistance).  It runs all night, every night.  So… it’s a good noise, I guess. 

The problem though, like I said is not the noise, but the reality.  The reality is much more complicated and more difficult to bear than the noise.  The reality that the noise represents is that she is not well… my daughter is not well.  That’s the reality that challenges my return to peaceful sleep.  That’s the reality that I would love to forget, if even just for a little while. That’s a reality that haunts a parent like few other things ever could. 

 Now I should probably clarify that “well” is relative to some degree.  I would like to be the first to tell you that, compared to some and compared to where she could be, my daughter actually is quite well.  But when I say she is not well, I mean to say that she is not as well as most other kids… not as well as my other kids.  No, by most standards she is not well at all. 

Reagan was born in April of 2008 with a brain injury.  That injury has resulted in significant developmental problems.  Most noticeable are Reagan’s challenges in the area of motor skills, such as the effective use of her arms and legs, and her inability to express herself normally through speech.  In other words Reagan can’t walk or talk.  In addition to those issues, Reagan’s brain injury has effected nearly every other area of life all the way down to difficulty with chewing, swallowing, and going to the bathroom. 

So when, I say that my daughter is not well, those are the things that come to the front of my mind.  In contrast to that however, is the fact that she has one of the most invigorating and contagious smiles that you can imagine and she is generally not afraid to use it.  In addition to the idea that she seems relatively happy in life (for a 3-year-old that is), it has also been quite incredible to see the value that she has added to many other people’s lives through her display of courage and trust.  And of course there is no one who has been more impacted by those traits than her mother and I.  Such is usually the strange dichotomy of the good and evil that seem to come hand in hand with having a hurt kid. The good that has come from the bad leaves me fighting to more joyfully embrace this unexpected reality that is now my life.  It’s a fight that must be fought more often than I had hoped would be necessary.  Yet, so often it’s the fight that leads me to a strength that I never knew was available to me.  It’s a life that I would never have had the strength to choose, but at the same time, a life that I can’t imagine having never experienced. 

The noise brings up all of those emotions and thoughts.  The noise won’t let me forget.  Sometimes that noise makes me want to go and wake her up so that I can see her smile again.  Her smile tells me it’s ok.  The noise reminds me of what is wrong, but her smile reminds me of what is not wrong, it reminds me of what is really, really good.  It’s a strange reality, isn’t it?  Sometimes I don’t know whether to be happy or sad.  Sometimes I feel both at the same time… it’s so strange. 

If you are a parent of a hurt kid, I trust that much of this rings true with you, regardless of how different your child’s circumstances may be from mine.  I also imagine that you have come to this place hoping to find more of that mysterious strength.  It is my hope that through our shared experience, God will fill us both up with the very thing He seems most eager to give: GRACE.  Grace that will help us embrace the reality that is ours. Grace that will make this more than ok.  Grace that transforms “the noise” into something that gently, but relentlessly points us to Him… the one who is better than life itself. 

So let’s journey together toward that end.  Let’s share with each other the victories and the defeats, the struggles and the hope.  I hope that you will come back often to read more and to also interact with what I say either through comments or through email.  We’re in this together, aren’t we?