Holland’s Just a Stop-Over On Your Way to HERE!

So people–those of us who advocate for and, generally, have children with special needs–are talking about the “Welcome to Holland” story again.  Honestly, I took offense to it the first, second and sixtieth time I read it.  It took me six years (that’s now) to come to understand that perspective, though it still offends me a bit, personally.  It just does not resonate for me.  While Amsterdam International seems to hit closer to the heart of the disappointment some parents of children with special needs might feel when expectations for “typical” are dashed with a diagnosis, it’s just a deeper look at the Holland POV.  Still, neither approaches my experience.  Though we all share the common experience of pregnancy and imminent parenthood, the similarities stopped there, for me!

We all approach this thing called parenthood — special needs or not — differently.  The first Holland story bugged the daylights out of me maybe because, as a later-in-life parent (39 the first time and 42 the second and third) I felt strongly that parenthood was a giant leap of faith that a parent-to-be undertook knowing that there was no way of KNOWING anything at all about what was about to happen.  Yes, I knew my life was going to change drastically!  Exactly how, though, was unknowable!  And so we all leap–in good faith–over and over again, despite the difficulties.  I got on that plane with an overnight bag for the hospital… and not a stitch of Rome-appropriate vacation-wear whatsoever.  You see, I KNEW that I had absolutely no idea where that plane was headed… except to parenthood, the GREAT UNKNOWN!  I boarded with no idea whether I’d find myself in Rome, Holland, England, Paris or any other major or minor city in or outside of the world as I knew it, back then. 

I used to believe that all those parents-to-be who entered into this thing called parenthood thinking they knew exactly where they were headed–namely Rome–were silly for believing that they could plan their lives out so nice and neatly.  I think that those who are blessed with children with special needs and who thought that way before their children graced their lives, are crestfallen because their expectations for a worry-free life in Italy have been dashed.  I, on the other hand, was overjoyed to arrive in Holland or anywhere that included a baby (or two) being handed to me–ALIVE–because of my ill-fated, doctor-tainted expectations! 

All my life, I had listened and watched carefully as others near and dear to me deciphered this thing called parenthood over the course of their lives.  As such, I knew there were no guarantees.  Before I ever entered into parenthood, I’d lost a cousin at the tender age of 16 in a car accident.  Another had a breakdown as a young adult and was left mentally disabled.  I had close childhood friends, one with a learning disability and one with Cerebral Palsy.  A niece has OCD.  A friend’s child has autism.  Another has 4 toes on one foot.  And yet another has Cornelia De Lange syndrome. There’s Cystic Fibrosis, Down syndrome, Cri du Chat syndrome, peanut allergies, asthma and more.  There’s a popular saying that “sh*t happens.”  And so it does… and not always to someone else’s kid… or to bad people!  It happens every day! As such, my thoughts went something like this, “How could I possibly take this giant leap into parenthood thinking, seriously, that it couldn’t happen to me?  Of course it could!”  Though the odds were against it, the chance was still there.  I had already settled it in my head that it would be OK, even if it did happen.  Because I’d seen it all turn out OK over and over again in other families.  Yes, sometimes it’s harder. And sometimes it’s easier.  Sometimes it’s rewarding. Sometimes not.  This applies to parenting kids with and without disabilities.

So, historically, my expectations were NOT set on landing in Rome or Holland or anywhere specific except “a new destination that included a baby!”  Still, I suppose I thought in the back of my head that the cr*p shoot of life would put the odds slightly in my favor for having a healthy and happy baby (despite the fact that I am Irish and Murphy’s Law often plays out in my life… it always rains when I camp)!  However, a very difficult, twin pregnancy managed my expectations in quite the other direction.  At eight weeks, my OB revealed the “other” baby–blowing my expectations of being a two-child family! So I reshaped my expectations to a 3-child family. Two weeks later I started to bleed and miscarriage threatened our babies’ lives for the next 10 weeks.  My hopes and expectations were precarious at best. At 21 weeks the doctors discovered unusual growth and calcification in the brains of both babies.  Diagnoses (read: “educated” guesses) like hydrocephaly and microcephaly as well as deadly viral infections including Toxoplasmosis and CytoMegalo virus were bantered about along with the horrific outcomes–brain-dead, vegetative state, stillborn and worse.  Doctor after doctor rushed me through test after test “in time to make the decision to terminate.”  Though I refused, my expectations ebbed and waned; Three medical professionals gave me a thread of hope to hang onto for my babies’ survival.  I finally decided “whatever will be, will be!” and called off all further testing, telling the medical professionals to be fully prepared at their birth for whatever may (or may not) happen!  At 32 weeks, the babies stopped moving.  The hospital monitors revealed I was in labor.  The C-section was uneventful (as much as a c-section could be) and The Boys were born and brought to the NICU.  “Healthy! Breathing on their own! Maintaining their own body temps!  Amazing at 32 1/2 weeks gestation!”  Then someone said, “There are signs.  We’re sending out blood samples.  We suspect Down syndrome.”  When I tell you IT DIDN’T MATTER, I kid you not!  After what I’d been through, Down syndrome didn’t register on my Richter scale!  Piece of cake!  My babies were alive and healthy and breathing on their own!  NONE of the horrible outcomes the doctor’s guessed at had come to fruition.  They effectively told me I’d landed in Holland and I was just thrilled to bits to be there with my babies… alive!!!  

After six years I’m just as thrilled as I was that day!  And after extensive exposure to other families with children with special needs, I understand the concept of Holland and still do not accept that I, or any of us, have been banished to another land or separate existence in the land of tulips and windmills.  I am right here in exactly the same place that everyone else who’s had a baby ends up.  My feet firmly planted in parenthood with all of its unexpected twists and turns and surprises. 

Raised in an inclusionary and fragile world where I have seen that, on any given day, any one of us can cross that bridge to disability with one unfortunate mishap, I am where I’ve always been and pretty much where I figured I’d end up.  In a perfectly imperfect–pseudo-inclusive, and workin’ on it–reality!

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in acceptance, children, disabilities, Down syndrome, parenting, Uncategorized. Bookmark the permalink.

6 Responses to Holland’s Just a Stop-Over On Your Way to HERE!

  1. I do so love to read your writing, and once again I’m amazed at your clarity. I am one of those who boarded the plane like you; ready for anything, and aware that the destination is not pre-determined or predictable. I’m still stunned at the amazing places parenthood takes us each day. Your family is so beautiful…but not that much of a surprise once you’ve spent a few minutes being friends with their parents 🙂

    • Maggie says:

      Thanks Audrey. If we’re open-minded about it, the parenthood journey–and every other life journey–is so much more exciting and enjoyable than a pre-planned trip to Rome, isn’t it? Glad our journies continue to cross paths every now and again!

  2. prairiegirl says:

    With you–with you–so with you 🙂 Whenever I hear parents say “This is not fair. This is NOT what I signed up for”–I always think “Yes–this is EXACTLY what you signed up for–cause you signed up to be a parent. And with that comes NO promises–except, perhaps, that it will be hard–it will surprise you, and it will be beyond what you ever expected (whether you child has a disability or not). So–SO with you!

    • Maggie says:

      Always appreciate meeting like-minded Moms on the journey! Personally, I find those same not-what-I-expected parents often live by what I would consider pseudo-unreasonable (IMHO) expectations in other areas of their lives and are disgruntled in those areas as well. In an interview 10+ years ago,I told the boss/company founder that I was getting married and likely to have children quickly but fully intended to continue working. She smiled and said, “Make your plans and remain flexible”… A month later she resigned from her own company to stay home with her children (leaving me to run the NYC office!) Everything changes all the time and nothing is what we expect them to be. My life as mother to these wonderful children with special needs has been nothing short of AMAZING! When I say that, sometimes I add that it’s occassionally a bit more work… then I recall the numerous parents I know who are struggling with and working hard to resolve various issues with their own children who do not have Down syndrome or ADD or any other disability labels. Life is really just a cr*p shoot LOL.

  3. Mike says:

    Maggie,

    I’ve read your blogs now for almost a year, wanted to comment many times but usually felt it was unnecessary or pety. Based on that sentence you might gather I disagree with your views often. However, I do enjoy your blog as it gives me a different perspective into a similar life as mine. You have given me a lot of food for thought on a great number of topics and your advocacy should be commended.
    Sorry for the length of this but I wanted to give you my quick background. My wife and I have 2 children. A 7 year old Daughter and a 3 year old Son. My Son has Down Syndrome. My wife also had 2 miscarriages, one prior to each child so we also had no preconceived notion that this would be a walk in the park. 8 weeks into the pregnancy with my son, we started seeing ‘issues’ as the technician mistakenly reported to us. 2 weeks later we found out officially that there was a problem and the baby was showing signs of a trisomy. Either 15, 18, or 21. Thanks to Google the next 4 to 6 weeks were hell. We prayed for Down Syndrome. Once we could have an amnio done, it was completed and we found out that we would be having a baby boy with Down Syndrome.
    So there we are happy to be having a child with Down Syndrome (as we should be) and never taking stock in the loss of our perfect dream. My son has changed my life forever and made me and every member of my family better people. But certain ideas of how life would progress were gone. I will certainly play ball with my son and he may play in some league games, but I’m probably never going to see him get a drivers license. He will be a part of his sister’s wedding, but my wife probably won’t get to have her mother-son dance with him at his wedding. We also look at my daughter and think about the tough times and decisions we have put on her after we are gone. It’s not depressing or dark to mourn these losses it’s just what life is. It’s a loss of a dream we all had and it’s ok to feel that as long as you allow yourself to move past it. That’s what I believe Welcome to Holland is about. You can tell yourself you have no expectations when becoming a parent all you want, but no one goes in without the hope of getting to Italy. You want a perfect, well balanced, smart, beautiful child. Welcome to Holland helps us to see past the preconceived notion of what a perfect, well balanced, smart, beautiful child is. I know because I have two of them. Different in so many ways and as perfect as each can be in their own way.
    I just think Welcome to Holland gets a little over analysed some times. Does it need to be some concrete meaning? Can it just be, what I think it was meant to be, a broad stroke meant to make people in some tough situations smile?
    Keep doing what you do because as I said, although I don’t often totally agree, I’m still reading a year later.

    Thanks for reading this,
    Mike

    • Maggie says:

      Wow Mike, that’s the best rebuttal I’ve seen for Welcome to Holland AND I’m really glad you came to recognize the “perfect, well balanced, smart, beautiful child” in both of your offspring. I can tell you that I did NOT EVER think I was going to Italy when my husband and I decided it was time, we thought, to have children. I thought I was embarking on a lifelong journeyin to PARENTHOOD with all of its trials and tribulations, joys and sorrows. I come from a BIG family and I learned, long before contemplating parenthood, that some children grow up, go to college, and/or get married. Some don’t. Some rely [too heavily, just a little bit or not at all] on other family members for support. Some are taken too soon, outsurvived by their parents. Some drive, some don’t; some have relationships, some don’t. Some start out well but a random force of nature changes their direction midstream such that they will not achieve all that their expectant parents once thought they might. This I learned ALL before I was even married! No, TRULY, I had no expectations, except the hope that I might be honored with a child or two (or surprised with three, in my case) to care for as best I can.

      As for your expectations, I wonder if you’re not setting your sights too low when you say that your child with Down syndrome won’t dance with his mother at his own wedding. He’s 3 and you’ve determined that? There’s nothing that says he can’t fall in love and marry if he wants to and you “let” him, perhaps help him. Greater independence is often realized in pairs — each entity contributing their strengths and covering their partner’s weaknesses! We hear of it happening more and more often, everywhere. Still, I must acknowledge that 6 of 21 “typically-developing” cousins in my own family have chosen not to marry! So, it could go that way for your son too. It’s a matter of his choice, I hope. Also, here in my little part of the world, I’ve met and/or heard of a few folks with Down syndrome getting their driver’s license. And, 2 of 21 cousins in my family did not choose to pursue their drivers’ licenses, opting to rely on mass transit, and another got hers well into adulthood. 14 of 21 cousins chose to attend college. 7 did not. And 6 of 21 are financially co-dependent with their spouses (speaks to the power of shared independence) and 6 of 21 are childless. What I’m trying to say is that I believe the possibilities and choices before our children with Down syndrome are endless if we look to the future as opposed to the past. What was once thought impossible, is now within reach. We need to acknowledge that the look-back is tainted by the limiting treatment of people with Down syndrome in the past, thereby failing miserably to maximize their abilities. My sons with Down syndrome will have the future we — me, them, you, educators, legislators, neighbors, friends and family…all of us — advocate and make for them through acceptance in our society. My Boys and I are giving it our best shot!

      I think Welcome to Holland is just what you said, a hopeful think-piece on what it’s like parenting a child with special needs (technically a grandparent’s perspective… which I hear is a TOTALLY different mindset than parenting). Thanks for your thoughts, Mike. Hope you keep commenting. We learn nothing if we share nothing and close our minds to the possibilities!

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