Thursday, January 24, 2008

It's not Holland



Have you read the piece Welcome to Holland, by Emily Perl Kingsley? If you haven't, you should. I have come across this piece many, many times, and recently it has shown up in the comments section of my blog a few times.

When I first read it, back when H and E were still in the NICU, I cried, and I loved it. It really helped me to understand, that although things had not turned out as we had planned, there was still so much to be thankful for. Even now, when I read it, I can appreciate it...especially the ending when it says, "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." I think that is true and poignant.

But, over the years, as I have read it and thought more about it, I have come to the conclusion that it just doesn't capture the reality of having a child with a disability, at least not for me, and I am sure for many others. It is almost as if the author is saying that although the experiences are different, they are equal. In many ways I suppose they are. For example, the love that we feel for our children is no different. The fact that we make sacrifices, and put their needs first is no different.

The problem with the analogy of Holland is that I feel like it really minimizes the blood, sweat, and tears, that go into caring for a child with a disability. We didn't end up in Holland instead of Italy. We ended up in the wilderness.

There is so much hard work that goes into having a child with cerebral palsy. It takes strength on many levels, emotionally, spiritually, and especially physically. A year ago, Eden was 18 pounds. Now she is 23 pounds, and while still too small, it is hard on me. I don't have the stamina to tend to her physical needs that I did a year ago. She is always on the move and I have a hard time keeping up with her. I am constantly hunched over helping her walk, lifting her into and out of equipment, in and out of the tub, holding her up so she can see what is going on. More and more, John is having to do most of it because I get so tired so quickly, and it makes me sad. Not just sad, but afraid...because I will only get older, and she will only get bigger.

In addition to the physical demands, there is so much more. There is a constant fight for resources. A never ending quest for information. Nothing is ever easy. There are IEPs with dissenting reports, bills that come in the mail that require hours on the phone, struggles with getting equipment covered by the medical insurance, keeping track of therapy, appointments, and recommendations. It never ends.

This is not Holland. It's the wilderness. We thought we were going to Italy, and instead ended up here. We have to rough it. We have to find our own food and shelter. We never know when we'll end up having to cross another river, or climb another mountain, or when another severe life-threatening storm might blow in.

People come to visit us in the wilderness, and they think they could never live like we do. But if you hang around long enough, you may learn what we have learned. In many, many ways the wilderness is even more beautiful than Holland or Italy. When you have to work so hard for what you have, you appreciate it that much more. Some days are hard and we have to seek shelter, but on other days there are clear blue skies. There are awesome, mind-expanding sunrises and sunsets that bring tears to our eyes. While everyone in Italy is enjoying their posh hotel rooms, shopping for high fashion, and marveling at the architecture, we are enjoying the way the sand slips through our fingers, or the feel of a soft breeze on our faces.

We can appreciate the calm after a storm, even knowing another storm may be brewing.


41 comments:

Aidan's mom said...

Billie:

This is a wonderful post. Your last couple of paragraphs gave me goosebumps.

Anonymous said...

This is so lovely. I've missed these kinds of posts from you as of late - you are a wonderful writer.

~ Jen

Marleysmom said...

Billie,
It is so true. Being pregnant has made it very hard for me to take care of Marley who is now 27Lbs.
I get out of breathe and hunching over to help her or get her out of the tub is harder everytime. I still have 7 weeks to go if I make it. I think we are gonna have to join Powerhouse and become body builders to keep up with them.LOL!
Just think we are learning something new everyday. Whether it is in regards to our children, medical insurance, medical issues,
or school related.
Girls look Wonderful!
Luv ya Heather

tripleblessings said...

Beautifully said. Thank you for reminding me of the hard work and challenges of parenting your gorgeous children. I don't really know all you have to fight for and struggle with, and need to be told. Of course it's not all cute pictures and happy days, but sometimes I forget the more complicated reality that lies behind your mostly-cheerful blog.

I wish the health care and education system were more fair for families with special kids. As a parent on a school council (in Canada), I hope that I can serve as a better advocate for families, thanks to what I learn from your blog and others like it.

I admire Holland and Eden, but I admire you and John even more. You are great role models for other parents.

Best wishes,

Leanne said...

I don't think that I've ever commented here, but I am a faithful reader. This post is so beautiful and well written that I had to say something.
Your girls are beautiful.

terriblepalsy said...

Great analogy Billie - much more appropriate than Holland.

BTW - my back is struggling of late and Moo is only 28 pounds and I dare say that I am at least half a foot taller than you.

Anonymous said...

Great post, Billie.
Amy

Kelly said...

My sentiments exactly.

I'm definitely feeling very "Swiss Family Robinson" about life, and last I knew, there weren't any ostriches to ride in "Holland."

Maybe it's all the kids we've got running around here, or maybe it's the fact that we HAD a normal life for a while, or maybe it's just the way I have to fight for EVERY LITTLE THING....

But yeah, wilderness living AIN'T "Holland."

(although YOUR Holland definitely resembles something out of Italy :D )

Mel said...

Billie-

I loved this analogy. You have such wisdom and strength. love you!

Mel

Anonymous said...

You have such a way with words. I remember someone writing an alternative "welcome to Holland" called "welcome to Beirut" - but I prefer your version. ;-)

Melissa said...

Beautiful post, Billie. You are a gifted writer and you express so many things I think about and cannot seem to put into words.

I am now a single mom (by choice) of twins who both have special needs, but I have been a special ed. teacher for 12 years. I work with adolescents with autism and each year, I send a copy of "Welcome to Holland" home to the families of my students. I always thought it was beautiful and helpful. However, my sons' premature birth and their subsequent developmental problems have taught me to look at everything from the point of view of a parent and not just an educator. Now, I still think the analogy is beautiful, but not as accurate as I did. I agree, this is not simply an equal alternative to having typically developing kids. This is unchartered, painful territory, albeit liberally sprinkled with joy and elation.

Thank you for your blog and for sharing your precious girls.

gem said...

Hi Billie. It has all been said but this is such a beautiful post it needs to be re said. No one who reads your blog regularly could doubt your love for your daughters. In that context it needs to be said that it it hard work for all concerned. In the context of your love and happiness it validates the feelings of other parents of kids with CP who are having a difficult time. They need ot hear people acknowledge their struggles. Well done. Gem

abby said...

Your eloquence amazes me. I have nothing else to say.

Abby

twinmama said...

You're so right, raising a child with a disability IS different. It is hard and heartbreaking (and backbreaking) every day. It is also amazing in ways that you never thought possible. Thank you for this post, you really do have such a powerful way with words.

barnyardmama said...

I think that "yeah" about sums it up. That's exactly how I feel when I overhear two moms deeply discussing whether or not they think their girls are cheerleader types or dance team types. First, how freakin' superficial, and second, oh to have that be the things I discuss. But no--that's not the path that life has taken.

Amy said...

That was beautiful. You should absolutely try to submit that for publishing somewhere. What a way with words!

Jacolyn said...

I've been trying to think of a way to explain what our life is like now. You said it beautifully (as always)

Anonymous said...

I've read your blog for a few months, and your writing is impressive and thought-provoking. I have 10-month old twin girls who were born at 29 weeks due to ttts. One of them has severe pvl and thus cp and cvi (she doesn't seem to see much of anything). I've often thought that the "Holland" essay was missing something, and I appreciate your thoughts about it, as you are further along this path than I. Thank you for writing about your experiences -- it helps immensely to know other people share some of my feelings!

Andrea

Sadie said...

Billie,

I think you need to send this out. To Parenting Magazine, maybe? Seriously.

I too always thought Italy/Holland didn't quite express it. Mixed analogy... just didn't... almost more like, "you wanted a girl so bad but you got a boy."--- not quite, but still... lacking.

I think the wilderness captures it beautifully, just beautifully. The edges, the hardship, the struggle, the longing for the hotel room... and yet the view is so different. Appreciation for life is on such a different level. In the hotel rooms, they're worried because the mattress is slightly lumpy. You're just glad the rain didn't get in the tent, and you feel positively ferocious because you were able to scare away the bear.

And when life lets you catch your breath from surviving, your view of the stars is unparelled.

---Sadie

23wktwins'mommy said...

I really enjoyed this post. I never really felt 100% comfortable with the "Holland" story, and opted never to post it or pass it on to anyone. I just don't think it gives life with a child with a disability true justice.
I like the way you chose wilderness to help explain the realities of your life.
Very moving and honest.

Artemisia said...

First time commenter here - what a perfect analogy.

I was never crazy about the Holland story, for the reasons you mention. I always felt we wandered onto a ship that sailed us away from the dry land of normalcy. Suddenly we were separated from our old friends and family, and our new compatriots were people we'd just met who were literally in the same boat. I think your analogy works a lot better....

Either way, the reality is that existance grows a lot more difficult and more precarious than if you'd gone to Italy and you are forever changed by it.

Leah said...

As everyone else has said, beautifully written. I'm also raising a child with disability, and we have our own hardships. (some different from yours, some the same) and your wilderness analogy is very fitting.

Anonymous said...

I truly believe that God only entrusts very special people with special needs children. I not only admire parents of special needs children, but I respect them for their ability to rise above. Your family will continue to remain in my prayers.

S. Bee

Miracles said...

BEAUTIFUL! I am in tears right now after reading that.

Proud preemie mom said...

Billie, I responded on the preemie blog to Liz's post as well about what you wrote here - but wanted to tell you directly I was so touched by your thoughts. Your analogy is beautiful. While my journey with my son could never be compared to yours - he is just a terribly, terribly bad eater - I understand the frustration you must feel sometimes. I would say I probably am in Holland while you are in the wilderness! But you are doing a beautiful job there. You have made it very homey for your girls. They are simply amazing little wonders. I like how honest & real you are. Holland & Eden are very lucky to have you.

All the best - Liz

Lorrie said...

I have just spent 5 hours reading every word from birth to present on your amazing little girls. I thank you soo much for sharing. On November 5 my daughter gave birth to her first child, my first grandchild. He was a beautiful baby boy weighing in at 12.5 ounces and was only 10 inches long. He is now up to 2 lbs 12 ounces and things are going good. I am so thankful for the insight as to how our next steps shall be taken. I am thankful that you and your girls have finally found your way off the roller coaster ride and I thank you for letting us know that there can be a happy ending to our ride.

Jennie - A Mother's Touch said...

As a mom of almost 9 yr old micro-preemie twin boys, one with spastic quad. CP and one with very mild spastic diplegia, I read your additions/revisions of the infamous Holland analogy and thought "Yes!!". Everyone and their dog gave me the Holland/Italy story when the boys were under 2 yrs over and over and I'd say "well... yes - sort of" and now I can share with them that we're not in Holland relaxing with a beer on a patio now that we've "accepted" our redirection... we're out in the wilderness still building our home, planting the crops, finding food, etc.

For your back... My son is now 45 lbs and you will find that certain things are hard on the back and the walking is one of the hardest. I can still "just" get my son up the stairs but the end of those days is coming and we'll be foraging again in the wilderness for more resources - move houses or adapt the one we have, etc.

Thank you for sharing!
Jennie

Kathryn said...

Billie you are such a great write. Thank you for summing this up so well and giving me a much better analogy to explain. Like you, when I first read that Holland vs Italy thing it brought tears and comfort. But over the years I have come to really dislike it because it assumes that you are in just a different city. Where there is everything you need and maybe more tullips. But you are soooo RIGHT - we are in the wilderness. It so struck me when you wrote about how we have to find our own food and shelter as well as the part about appreciating the little things like a soft breeze on our faces versus posh hotels and fancy architecture. This is my favorite post yet. Thank you thank you for summing this up.

GREAT POST!

Kathryn said...

oh - and when Ellie got to 10 pounds that is when my lower back started to really hurt. But it's weird it doesn't as much anymore and she is 32 pounds. I think I lift her differently and not as much. Which makes me sad. But I also make her do more like when I take her out of her chair I help her lean forward and then ask her to push up on the foot rest so that she helps me lift her. Also, I have way less stamina too. I am sorry that has happened to you too but it was also really validating because I beat myself up about it quite often. I ask Dave to lift Ellie whenever he is around and it took a diagnosis of pinched nerves to make me do that. Sigh. It's not a sprint huh? It's a long long marathon that we have to preserve ourselves to get through. And lastly, it has helped Ellie that I am making her do more because I can do less....ever evolving as we go. GReat post. You really have an amazing way of capturing what I am living.

Kathryn said...

I meant 19 pounds! dah!

Kendra's mom said...

Oh my gosh, you made me cry! I have often referenced that story in my blog and personally as well as using it at Kendra's memorial. I am still involved with my special needs support group and can see what goes into looking after a disabled child even though I am no longer living it. I hope you don't mind me linking to this post in my blog.

MeghatronsMom said...

Billie,
As always, so eloquently written. I too have heard about Holland more than I care too in the last 4 years or so. I LOVE your analogy much better & will give it to someone the next time they throw that at me.

Love the new pics!

Shannon said...

Thank goodness I like to camp.

Again, you have found the words that so many of us felt were just out of our reach. We knew the analogy was missing something but couldn't quite make it right. It made me think of every time we camp. Always, in the middle of some set-up catastrophe, I end up looking at Dave and saying "this sucks!" but I never want to go home.

You will get stronger and you will all adapt. Every time I am afraid that I won't be able to lift Ben for much longer I get stronger and we figure out ways for him to help me. That is part of the reason I joined a gym!

Thanks for lending us your voice.

Kendra Lynn said...

Utterly beautiful, Billie.

I have no more words to describe it.

Kendra

Mete said...

Brilliant. I totally agree. I still believe the Holland passage accurately portrays those initial days; the early grief for the imagined life you have to give up. But it has nothing to do with the day-to-day fight parenting becomes. The wilderness is the perfect analogy. You have to build your own shelter from scratch, one stick at a time, with no instructions, no supervision, and often, no support.

There is no way to compare to raising a physically dependent child to a neurotypical one. Everything is a struggle from the very beginning; so much you take for granted. I remember being awed by how easy it was to diaper and dress my other two children. It's an entirely different world.

Ethan is over 45 pounds now, and sadly he's too big for me to do much for physically. I can lift him to move from place to place, but his length and weight make him too awkward to do much more. I hold him for a while on the couch and my legs will start to go numb from the pressure on my lap. Jete handles all bigger issues like bathing, and his back is paying the price. I know that is coming to an end, over time, and it's hard to think about.

We're in the midst of a calm before a storm - Ethan's next surgery is coming sooner than we'd like. While that doesn't make us happy, we're still content. In our house, every day together is a gift, every moment is precious. I don't think we would have realized that as much if we hadn't been thrown into this wilderness.

Anonymous said...

Hi Billie - I've been following your story for about a year now (through Liz McCarthy's blog - we are both in a multiples club together). I've never commented but your words today were so inspiring. I sent them to a friend who has a son with CP. You're an amazing writer, and I truly admire your strength and positive attitude.

Stephanie

pattyo said...

Billie, I think this is more beautiful than the original "Welcome to Holland" story.

Anonymous said...

I am speechless ... I had to read the post over and over again. It's beautiful.

Best wishes
from a dane

gwendomama said...

your daughters are stunning. they are gorgeous.

your post is right on.
i seemed to be one of a small handful that took offense to that holland crap. sure, at first, when our little guy was a tiny little mysterious growth disordered anomaly, and we were trying to justify why he was in the NICU instead of with us, it may have provided some comfort.

but then, when a certain world reknowned ivory tower hospital turned their backs on taking any academic interest in him at all, and then still later again, when i found myself cradling my one year old in my arms without any life left in him, i came to hate that piece.

holland, schmolland.
i got dropped off in the this beautiful idyllic island with no resources - no way to survive. then i was dropped off in the pit of hell. that was when he died.

my friend who is mom of son with autism says it's more like baghdad for her.

things are better now. but i still have a strong reaction to that holland piece.

Anonymous said...

Billie,
I am so sorry - I was the one who left the "Holland" post. After reading the strength of the negative reactions from some of your other readers, I have to apologize to you. If it bothered you even half as much as it has apparently bothered them, I am so sorry. You seem to be such a beautiful person, with such a beautiful family, and I have so much respect for the way you are mothering your two girls.
The comparison to the particular country (with its strengths and weaknesses) is not what caused me to send the story to you - it was the part at the end:

"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.'
The pain of that will never, ever go away, because the loss of that dream is a very significant loss."

That was the part of the story that resonated with me and that I thought might be something like what you were feeling. I know I can't understand all of it - my extreme preemie does not have CP or many of the other issues your girls deal with - but we did have an extended NICU stay, multiple surgeries, surgical feeding tube, and years of multiple therapies. And I often grieve what "was supposed to have been", for the dreams and plans I had for my surviving child's pregnancy, birth, infancy, and childhood. Not to mention the plans I had for her twin sister, who did not make it. And I would have to say that living without her sister is certainly worse than Baghdad or any of the other places your readers noted. That said, the Holland story still touched me in the sentiments it expressed about longing for something that didn't happen while trying to live and find peace with what we have been given in life.
So, as always, my hat's off to you. You are an amazing woman, and I would never intentionally comment in any way that would trivialize what you are handling with such wit and grace.

(and by the way, so many of your readers comment that you should write a book, and I think they are right! Maybe you could turn your posts into a book, I don't know. But because of you, I have become addicted to blogs, and yours is still one of the two best I read.

juneheller said...

I love your blog. You are an amazing writer, beautiful person, and super star Mom.