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Thursday, July 15, 2010

Holland, revisited

I think I was in high school the first time I read the essay "Welcome to Holland," by Emily Perl Kingsley. It was printed in my local paper's Dear Abbey column one weekend morning, and I vaguely recall being somewhat interest in the analogy--having anticipated one thing, you end up with another. By allowing yourself to experience the new and unexpected "other," you find yourself embracing it, finding beauty, and, eventually, living in joy.

Kingsley's piece is one of those rare, enduring gems that follow you throughout life. Since my initial meeting with it, I've stumbled upon it countless times. I've had it arrive in my email inbox, seen it noted in publications, and heard it referenced often enough to realize that it's part of the common vernacular.

Now that I'm actually parenting a special needs kiddo, I find myself confronted with Kingley's optimistic analogy far more often than I'd like. Acquaintances who realize that Oliver is not quite the typical 3.5 year-old will often quip that we didn't get to Rome, but that Holland is a fine place. Family members smilingly reassure us that we'll find the right guidebooks to help us "see all the sights" at our new destination. Doctors and therapists ask us if we're familiar with the essay--as if this one piece of writing sums up their own philosophy of special needs parenting in a way everything else they have offered cannot.

And yet, for all of its ubiquitousness and acceptance, I have to admit: I am no longer a fan of the Holland analogy.

I feel like something of a traitor admitting this, but there it is. I can't quite put my finger on the why, but something about that particular point of comparison leaves me feeling hollow. Maybe it's something like my gut reaction to those well-meaning folks who pat me on the shoulder and assure me that I must be a very special mother for God to trust me with Oli? As if people who parent kids with special needs won a Holiness Lottery? As if I people are lining up to watch their children struggle through disabilities, difficulties, medical maladies, cognitive issues, autism?

So, so often we Christians see people who carry burdens we don't want and assign to them a particular place in the order of Everyday Saints. "She is so good with him. I could never be that patient." "I don't know how they manage with all of her issues. I can't imagine juggling all that." "Just mothering that little one looks like a full-time job. What a crown is waiting for her in heaven!" Watching a mother or father calm a tantruming pre-teen, seeing the care taken in patiently leading a clearly disabled child through relatively simple steps, listening to the litany of modifications necessary for a certain child to participate in a seemingly normal activity ... it all sounds like the work of selfless, hyper-attentive special parents. Not the kind of parents who deal day in and day out with issues no bigger than ear infection and skinned knees, but the moms and dads who know the best neurodevelopmentalists in the region and can easily rattle off a list of alphabet-soup diagnoses that are meaningless to the public at large.

Maybe most of these people are destined for mansions in heaven for their utter devotion to their special little ones. Maybe they never look at their baby and wonder "what if?" Maybe they don't ask God "Why?" Maybe it's never occurred to them--not for one, tiny moment--to long to see their child with the veil of those diagnoses lifted.

I am not one of those parents. For me, Holland is a rotten analogy. Truthfully, I'd love to go to Holland--or someplace like it--someday. I am a fan of the road less traveled, the path not taken, and the drum that beats to its own time. The place I find myself with Oliver, though, does not remind me of a set of landmarks that I should revel in. Rather, being Oliver's Momma has more to do with loving him exactly where he is while hoping, praying, and striving for him to be all that he can be.

And the Holland thing? Well ... it just implies a certain amount of acceptance that I'm not ready to surrender to. Yes--Oliver has special needs. He has cognitive delays, physical delays, medical issues, Fetal Alcohol Syndrome, hearing loss. Those are the labels that tell me where he is today, right now, at this moment. If I begin to buy the Holland analogy, I'm afraid that I will look at those labels and decide that this IS Oliver. But for me, well ... I prefer to think that the REAL Oliver is locked inside the cage of those things. That maybe, with God's healing and grace, with patience and prayer, with hard work and opportunities, with all of us pulling together and giving him everything that we can ... maybe, some of those labels will no longer stick.

I was devastated earlier this week to receive an official evaluation that all but wrote off Oliver's future. At less than four years of age, professionals have decided that this beautiful blessing shows very little promise of blossoming into a productive, capable citizen. In other words, he will stay in Holland. He will enjoy the "slower pace" and simply be. He has no hope--none at all--of ever even dreaming of seeing the sights of Rome.

I, for one, refuse to accept that. God didn't give up on me; I will not give up on Oli. The Lord pursued me, fought for me, won me. Surely I can do as much for my beautiful, sweet, loving son?

I am not a Super Mom. While I was specially chosen to be Oliver's momma, I don't think it was because I possess any particular holiness that the average Christ-follower can't find within him or herself. If anything, it may just be because I am as stubborn as they come and the Lord knew that I would not take the news of Oli's diagnoses as a death blow. Oliver deserves a chance to shine. He deserves as many learning opportunities, as much love, and as warm a family as we can offer him. My heart tells me that sitting on my haunches and letting Oli stagnate would be nothing less than a sin.

He may someday rise far beyond everyone's expectations. And he may not. But, you have my word--it will not be because no one took the time to water this tender little shoot's potential.



9 comments:

Liz said...

that reminds me of something that someone told me oh so many many years ago- i said something about " a down's syndrome baby" and she so gently said, "no, not a downs syndrome baby, but a baby. a baby that has downs syndrome." i pondered that and still do notice it when other people say it- i get it now. we are not named by our "deficiencies", or our "diagnosis". we are people. we have a name. and we have a lot of words than can follow after our names-but these things do not define us- they are not us. one must be careful to not define oneself, or another person by whatever hurdles they have in their lives.

and i totally get the comments about how strong or fill in the blank other word you are to be doing XYZ. i get that a lot in regards to fostering, and now in regards to having lost a child- i don't know what people are thinking to think i must be stronger and that is why my baby is dead. no one wants there child to suffer. no one wants to have their child die.
ok that was very rambling-sorry! lol

Anonymous said...

Maybe it is not Holland. Maybe it is Beirut. This article is about Autism, but I bet that you can relate.

http://www.bbbautism.com/beginners_beirut.htm

You Can Call Me Jane said...

I admire your outlook so much. And I think that's what all this is about- the way we choose to look at things. We get comments about all the patience it must take to homeschool, to grow our own food, etc. We're not any more special than any one else. We just look at things differently. Not better. Just in a different way.

I really like the way you look at things, Mary Grace.

The Reader said...

GOOD FOR YOU.

yes, I'm shouting. Because that stubborness, that determination to see beyond the label, that willingness to do all you can -- NO, that UNwillingness NOT to -- that is the absolute best thing for Oliver and all of you. And so, Good for you, for seeing inside the cage, behind the veil, and seeing who Oliver can be.

Praying for all of you, as you help him surpass the expectations of the world and rise up to the boy you see inside him already.

Kate said...

I didn't have these words but I feel this way with my kids. You never know just what amazing things can come about.

dining table said...

Autism is very common now a day. There are too many people who suffer autism. But there are more people who are trying to help people who are suffering autism.

Alicia said...

Amen! I understand your feelings all too well as a mom with a child with autism. My son is now turning 11 this week and I remember those days of wondering (at 4 yrs) if he would ever speak or read or anything else. I knew that I was picked to be his mom (he is our blessing from Russia) and that God had special plans for him. I have never given up and now that he is older, speaking and reading and growing into a preteen (yikes!) I can see how far we have come by the grace of God. God has special plans for Oli and what a joy it will be to witness them unfold. I am praying for you and Oli and your family as you embark on this journey together. Blessings

Charlotte said...

Actually the analogy is more accurate than the original writer knew, but not in the way that she expected. I worked in Rome for 6 weeks and Holland for 1 week (back in my life before children). Rome was wonderful, but had its bad sides as well. I absolutely loved Holland, but raising a kid with issues is far more like going to Amsterdam. Everyone else sees Amsterdam from the canal boats. It seems like a nice place to be and there certainly are oasises. However, if you get off the boat and walk through the streets, you are appalled. Pornagraphy is all over the place. Prostitution is open and sad. Filth and needles abound. You wonder why anyone would choose to live that way. The special needs that I deal with feel more like I just make occaisional visits to Amsterdam. Some people have to live there and that is the hard part.

Autismland Penny said...

I hate that analogy too. Don't give up. God has something big planned for Olli. I got the same diagnosis when Logan was 3 & 1/2. Find a good group home because he will never be independent. Now at 12 almost 13 , I can see what God was trying to teach me and the blessings that he has rained down on me. Keep your eyes on Him and He will take care of the rest!