Wednesday, April 08, 2009

A Little Tiny Baby In His Hands

I got an email, just a few minutes ago, from someone I knew many years ago. We both worked with people with disabilities, for the same agency, but in different locations. We were never friends. In fact we were more often at odds than we were in agreement. I respected her, as much as anyone can respect another who holds differing opinions, but I did not really like her. So an email from her was an odd and unexpected thing.

The email was brief, not long on friendliness, and asked of me a favour. Apparently this woman's best friend's daughter has had a child, a girl, with significant disabilities. She asked if I could write her an inspirational kind of condolence letter. Something to help her understand that this isn't the worst possible thing that could have happened. Would I please?

My first thought, an unkind one, was that 'with these kinds of friends' ... I mean the suggestion of a condolence letter to mark the birth of a child. Yeah, an email from a stranger to replace the warm wishes of friends. A condolence in place of a congratulations. Babies are babies, they are never tragedies. Sure there are tragic circumstances and tragic journies ... but babies, to me, are babies. And babies are about hope and joy and strength. Life holds on. Even a brief life, is life. Even a tough life, is a life. Every battle has hope of victory. I get that there have to be some adaptions as parents switch from fantasy child to real child. I also get that, never having had a child, I will never understand that moment of reckoning. Not truly. Not really.

But, a baby.

A baby may have severe disabilities but they shouldn't have to bear, on tiny shoulders the disappointment of others.

A baby may have medical complications but they shouldn't face complicated surgery without the support of a very uncomplicated love from family.

A baby may have a tough road but they are carried the first few miles ... aren't they? Shouldn't they be?

I can't write this email. I can't conjure the picture of these parents. I can write to you out there in the nonspecific universe about specific issues. But to write about a baby. A little tiny baby. I just can't do it.

Give her hope in your touch.

Give her love in your voice.

Give her faith in your arms.

A baby cannot be greeted with a condolence ...

A family cannot be supported by a stranger ...

Even so, welcome to the world little one ...

may life surprise you and may you surprise others.


yanub said...

Just because your acquaintance has a knack for unfortunate word choice doesn't mean that the new parents don't need to be lifted up. Lift the parents, and they lift the child. Leave the parents in self-recrimination, doubt, guilt and fear, and the child is left as a focus of sorrow. As for whether a family can be supported by a stranger...who is a stranger to a new parent? Everyone talks to them. Unless they have a baby with a disability. Then suddenly, the world is full of strangers. I think you made a good start of something helpful to say. Why not follow through? You may be the first person to talk to them who is genuinely happy to hear of their new arrival.

Anonymous said...

Dave, if anything you have done before in your life is to have meaning, reach out to the parents of this baby. Be her first advocate. Take that power chair and point it toward the mall. Buy the prettiest, pinkest congratulations card you can find, and write a note wishing those parents hope, faith and joy on the birth of their daughter, and point out that when things seem dark, the light will return in ways they can not yet anticipate. Tuck in the card a short list of resources for parents of special needs kids, and drop it in the mailbox before you change your mind.

Condolences should have no place on this occasion.

Dave Hingsburger said...

You are both right and thank you for your comments. This bothered me all night. I think I was reacting more to my feelings towards the woman who asked rather than to the task she set before me. I got up to draft a letter (I've said letter but I was actually asked to send an email, I still use old fashioned words) to the family. Sometimes I get things wrong. This is one of those times. I had thought of rewriting the blog to make me look a little kinder but decided not to ... I guess it's my journey too.

Heike said...

Dave - your post is exactly the letter you're supposed to write!

Tamara said...

I'm glad you're writing for the family's sake, and maybe your former coworker will learn something.

Our two pastors came to visit us in the hospital after our son who has Down syndrome was born. [They were both visiting a terminally ill man in the same hospital, otherwise, I don't think we would have gotten double-pastored.]

One said - I just want to say "Congratulations". And he went on to tell the story of a friend of his, also a pastor, whose daughter was born with significant disabilities, and he called him to say how sorry he was to hear about it. And the other pastor said, don't be sorry - and talked about the wonders of his daughter - and said the only thing he needed to hear was "congratulations".

When you teach some people, they do learn. I've always been grateful that one pastor took the time to teach and one took the time to listen. It was a good moment.

wendy said...

It's clear to see why you didn't get along with you former co-worker. A condolence message on the birth of a baby! I'm sure you'll find the right words for these parents and, indirectly, for this baby. How lucky that your co-worker thought you were up for the task even if she had a different task in mind!

Belinda said...

May I add a blessing to this little one? I shower her with blessings for every breath she takes; loving arms to hold her; seeing eyes to observe her; gentle hands to touch her; soft words to fall upon her ears.

Debbie said...

During my pregnancy, when we learned our daughter had Down Syndrome, everyone said "I'm sorry." The very first person who said "Congratulations!" was a complete stranger I talked to while trying to order pamphlets from LaLeche. I will NEVER forget that woman or the true enthusiasm I heard in her voice.

Please send the new mother a note to congratulate her. She probably needs it. And as Hieke said, your post would actually be a very beautiful note.

what_the_heck_of_that? said...

When my daughter was born very premature, and not too long after was diagnosed with Cerebral Palsy, I had lots of friends and family wishing us well, like nothing was different (though I knew it was really because no-one knew what else to say).

Then one day I received a pretty pink card in the mail from friends we have little interaction with, and this card congratulated us on our little pink bundle, but also wished us well for the CHALLENGES that lay ahead. And for the first time, I felt that at last some-one else 'got it'.

From that day, I accepted that there would be challenges, but knew that my baby girl would always be a precious gift. And I’ve never forgotten the friends who helped me realize that.


lisa said...

Dave, I am so glad you reconsidered this. Unfortunately, we are so often driven by the opinions of others and to hear from someone who really understands the inherent worth of each and every person will help these parents in ways you may never imagine.
Thank you,

CJ form California said...

I think the word "condolence" and your feelings for your former co-worker may have colored your reaction.

Both of my sons were premature. With the second one I was 37. I had a screening test and was told that my child was high risk for DS and the only way to know for sure was thru amnio.

I decided to have the amnio to become prepared both family wise and medically should there be complications at birth. I NEVER considered abortion if he had DS.

To my surprise, others did.

He is, has been and always will be my son, DS or no DS.

I tend to find purpose in everything and try to learn from each challenge in life.

This baby was meant to be with this family. She is theirs to love and cherish and to find purpose and meaning.


I think you can help them begin this journey.

Ashley's Mom said...

I absolutely loath pity when people speak of my daughter with significant disabilities. But nothing warms my heart more than words of celebration for my very special, very unique, extremely loved daughter.

Celebrate the birth of this baby with the parents and urge them to celebrate every single day thereafter.

theknapper said...

I remember you telling the story of Hikari Oe's father having to make the decision re his son's life.....the doctors told him to "Always choose hope". That message has stayed with me.

Colleen said...

Dear Dave:

I agree with the responders who have said that your blog post was a very good start to your message to these parents. I believe your acquaintance, if she knew anything about you at all, knew that a condolence was not what you would send. Perhaps she just didn't know what to ask for??? but she sure knew the right person to ask.

Let these parents know that, no matter what, this child, like all children, is full of the potential for joy, this child is beautiful, and this child is perfect (in the sense that we are all perfect for what we need to do in this world - my daughter, who had a disability, taught me that) (and BTW that includes you Dave - you are perfect for this task and all the others you need to do in this world)

Welcome little one. We are full of joy that you are here with us!

macmetis said...

Hi Dave
This is my first time reading your blog..............a friend /cowoker told me about it.Most of my working life i have worked with people with disabilities....I have worked with down syndrome children and the most important thing that i have learned from these precious lives is just that .how precious life is . These children have an ability to love in the purest truth of the word.....these children grow up yo be adults and what is remarkable is that on their journey to adulthood they seem to arrive at that destination with the ABILITY to still love in the purest truth of the word...What a world it would be if everyone could make that same journey and arrive at adulthood with the same ability to love like that.... please pass on my congratulations to the new parents. tell them to hold on the love fest is about to begin

LM said...

I read this entry and immediately thought of another one you wrote. I know this isn't the only post that applies, though because it took me a while to find the one I was thinking of, and I ran into a couple of other good ones, and I think you've even retold that story a couple of times. So, really, reading your own blog isn't such a bad idea. Other commenters have said much of what I want to say, starting with the first one, so I don't have much to add.

But, the point is, you've gone on about what an isolating experience raising a child with disabilities can be. More isolation isn't the way to go, even if your "friend" doesn't have a way with words.

One Sick Mother said...

Ditto what yanub said.

Anonymous said...

You said one thing in your column, Dave, that is just dead wrong: "A family cannot be supported by a stranger ..." Yeah, they can. I just spent 2 years fighting cancer, and my biological family couldn't have cared less. Yet I got support from strangers who saw the telltale cancer "hairdo" and had a positive word to say, or the strangers who volunteered to help through my son's school, through the cancer society, and other complete strangers who took the time to say something kind or supportive. An act of kindness has power, no matter where it comes from.

Anonymous said...

What a wonderful surprise I got when I opened your comment section this morning. I was so pleased you changed your mind and decided to write to the family.
When I read your post yestereday only yanub had replied and I felt what was said was so are best place to write to this family to give them hope.
I too was that mom five year ago next Thursday! My boy arrived with an extra chromsome!
Its been an interesting journey....and I have had wonderful support from people who at the time were are friends!
I would have loved to receive words of wisdom, a heart felt congratulations, and positivity from you Dave when my boy arrived!

Anonymous said...

I am the proud Mother of a son who now 17 has been diagnosed with Aspergars syndrome. Prior to his diagnosis my beautiful son was described as different, unique, eccentric,strange, weird etc by countless teachers,strangers,relatives and so called friends. As his Mom I was never offended by these comments but was certain they didn't know him the way I did, they wer unaware that he had many gifts to offer if they would just take the time to get to know him. I have always saw my son as a person with lots to give not as someone strange or different. Aren't we all strange and different in our own way??? However when my son was 8 years old ONE teacher saw the potential the unique abilities and the brilliant mind and held my hand through diagnosis and beyond. To her I am forever grateful as she gave my son something those critical ones did not hope, a chance for a bright full future and nonjudgmental acceptance. Shouldn't we all be the ones to give this to others. I'm sure that is what your acquaintance is looking for...a positive outlook for the family to focus take away the focus of the disability. What an honour that she thought of you!

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