Posted by: halliesklar | September 24, 2011

Welcome to Iceland

Geoffrey has albinism.

We learned this on Thursday.

Jamie and I have both known in our gut for a while that something was “off”. We noticed—and worried—about the fact that Geoffrey wasn’t making eye contact. We noticed that his eyes kept darting back and forth, from left to right, in a way that made him look shifty eyed. We noticed he’d smile and laugh if we said his name or tickled him, but if we looked straight into his eyes and smiled, we’d get no response. We noticed that he wouldn’t reach out for objects unless they were right in front of him, or that if given an object he wouldn’t look directly at it but instead would explore it with his hands and mouth.

We talked about it with each other but we thought we were being paranoid. As the parent of one child who already has a disability, we are so sensitive to even the slightest hint of something wrong. Geoffrey was meeting his other milestones on time or even early. We decided to carefully watch, and wait.

At Geoffrey’s four month checkup on Wednesday, his pediatrician diagnosed him with nystagmus, a condition where the eyes move back and forth. We saw a pediatric ophthalmologist on Thursday, who examined our son and explained to us that he has albinism, a condition where there is a lack of pigmentation (color) in the eyes and often in the skin and hair as well. It’s this lack of pigmentation that leads to vision loss.

Needless to say, we were stunned. We never in a million years imagined this could happen. We are grieving and processing this information. Fortunately, there is some good news. We have already made contact with a couple families whose children have albinism, and they are doing extraordinarily well, even with their vision loss. The children excel in school, play sports, ride bikes, and have active social lives. They are able to participate fully in the classroom with some minor modifications such as sitting in the front of the room.

It is too early to tell how much vision loss our son  has. Some people with albinism have 20/40 vision, while others are legally blind. But we do know that even with vision loss, Geoffrey will be able to do many, many things, and that the list of what he can’t do will be miniscule compared to all the things he can.

When Johanna was first diagnosed with Down Syndrome, we were given a poem called “Welcome to Holland.” The poem likens raising a child with a disability to finding your plane accidentally landed in Holland when you intended to go to Italy instead.

I’ve been thinking a lot about that poem over the last couple days. When we gave birth to Johanna, we discovered that we landed in Holland. We were shocked, and overwhelmed, but we soon learned that we loved Holland, with its quaint windmills and tulips and strong Dutch beer. 17 months later, we took our trip to Italy, with our second child, Theodore.

I won’t lie to you. Italy is amazing. Nothing can quite compare to the Uffizi in Florence, or to the gondolas of Venice, or sipping a fine Barolo while relaxing on a yacht in the Italian Riveria.

Now, with our third child, we find once again that our plane has been rerouted, but we’ve landed in a new place, a different place. I’d like to think we’ve landed in Iceland. Maybe it’s because Geoffrey, with his white gold hair and blue-gray eyes, could fit right in with all those Vikings. Or maybe it’s because while it’s a place many people wouldn’t choose as a vacation destination—it’s cold, and difficult to get to, and lacks the culture and fine cuisine of Italy—the reality is its fjords and tall mountains are among the most breathtaking you’ve ever seen.

So we’re in Iceland right now, Jamie and I, just soaking in the delicate greens and grays of the landscape and the flinty blue sea. We’ve had a bit of a shock but once we settle in we plan to view the Northern Lights and soak in the Blue Lagoon. Not to mention the phenomenal river rafting and mountain biking and spectacular black sanded beaches the likes of which we’ve never seen.

Are we sad we won’t have one last trip to Italy? Yes, but don’t pity us. We’re in a new place, an exciting place, and we’re beginning to realize that exploring the volcanoes and geysers of Iceland is exactly where we want to be.

We’re lucky, in many ways, to have children to take us to such fabulous, cosmopolitan places.

So, welcome us to Iceland. We’re scared as hell, and we don’t quite know what to expect, but we still think we’re in for the trip of our lives.

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Responses

  1. the kids are all lucky to have such WONDERFUL parents, and grandparents!

    Barb Feldman

  2. I can’t imagine the shock of learning this, and I know you’re processing it all, but I was glad to read bursts of that Hallie spirit. xo

  3. Hallie, my half-brother has albinism and so did a good high-school friend of mine and his mother. They are all totally normal, fun-loving, functional people–who burn really easily in the sun and who don’t have great vision. All of them wear glasses/contacts (as do I); none are blind and neither was the Asian-American with albinism that went to Brown University with me (i.e., he did OK!!). The only significant challenge for my half-brother was the nystagmus–the eyes rapidly moving–which affected vision and meant he couldn’t get a driver’s license. But there was some operation he got that stopped it, and now he can drive. Really, don’t be scared. Just stock up on hats and sunscreen!

  4. Bravo!

  5. Thank you for the honesty in this post–holding in tension the “don’t pity us” and the “it’s sad.” Our oldest daughter Penny has Down syndrome, so I know about Holland, and we have two younger, “typically developing” children, so I know about Italy too. I’ve never been to Iceland–literally of figuratively, but my sister just returned from a free trip to Iceland through her work with Whole Foods. She loved it.

  6. What a phenomenal spirit you have. Your children are truly blessed to call you “Mom”!

    Wishing nothing but the best for you and your family!

  7. Found you via LoveThatMax –

    I wanted to tell you that I’ve been there. I have one child with cerebral palsy and one child with Down syndrome. I’ve never been to Italy. :)

    Also, my husband and I have a friend who has albinism – he’s awesome! I honestly never think much about the albinism because it really isn’t something that seems to be a big deal to him. He drives (actually he’s a classic muscle car enthusiast), works, travels frequently, and is married with a daughter. He has talked about his childhood before and the outlook his mother was given (not even close to reality!) Other than that, his main issue is sunscreen – and he lives in Florida, by the way. His eyes do move a lot, but I think I’ve only noticed it because I’ve been around him a lot – his personality is larger than life so that’s what stands out about him, not his white hair!

    Email me or visit my blog if you’d like me to put you in touch with him, or if you’d just like to chat about being That Mom With Two Diagnoses.

  8. I was sent this and wanted to reach out. I have a son with Ds and when he was 4 months old, I went to the opthamalogist for a nystagmus and was asked tons of questions about albanism. It totally freaked me out. My kids are toe heads so I became convinced that my son with Ds was also an albino (wine and google will do that to you!). Anyway, I learned tons and was surprised by the misinformation I had (and the doctor had, btw).

    Your son is adorable. You will find your way and enjoy it, I am sure.

  9. I’ve been to Holland, too, and then Italy, and now I think I’m in Madagascar. Molly, my third child, seemed fine at first, though I did have an inkling that something was off. She acted more like her sister with DS than like her brother, my average model child. The doctor told me I was paranoid… right up til Molly started having seizures. She has Congenital Hypomyelination Neuropathy. She’s now 22, is non-verbal, and still wears diapers.

    There’s a lot to enjoy in Holland, and Italy and even Madagascar, though none of them are perfect. There are days I wish I wasn’t in any of those places, not even Italy. And there are days I wouldn’t want to be anywhere else. Madagascar is a strange place but those lemurs are hysterical.

  10. Thank you for writing with such honesty and such obvious adoration! Our eldest has DS and nystagmus. It makes for some clumsy days and some truly amazing triumphs. I feel a bit like we’re on a cruise – a new destination every day! Some places we love, some we’re not so keen on but we’re together. Looking forward to following your progress and grateful to Ellen for sharing your story. X

  11. Hi, my name is Mark, and as a 50 year old albino, I want to let you kow that there is no reason to “grieve” your son’s albinism. Yes, being albino poses certain challenges, the poor eyesight, the sensitivity to sun, the very different look. None of these challenges, however, are anything that cnanot be overcome. 3 out 4 children in my family are albino, white hair, white skin, bad eyes, the whole smack. In 1956 when my older brother was born, my mother was told that he would not live to see his first birthday, albinism was thought to a birth defect back then. Well my brother turns 56 this year, guess the medical community blew that one. Our eyesight is different from one to the other, I have the worst eyesight and am considered legally blind.

    The single best piece of advice I can give you about having a child with albinism is, “let your kid be a kid”. My parents did not do anything to treat us differently or specially, they didn’t know any better. We went out and played with all the other kids and we learned to adapt to our surroundings just like any other child does. Will your child fall down and skin his knees, yes, will he have trouble doing some things because of his eyesight, yes, will other kids tease him because he looks different or because his eyes dart back and forth, yes. But that is no different than any other child, every kid will have problems doing some things, will get teased by the other kids, and they all fall down sometimes, but that is all normal for any child.

    My albinism never stopped me from doing anything that I really wanted to do. As a kid I played football, basketball, tennis, raquetball, golf, etc. I lettered in golf in high school. I will admit that I was never able to play baseball because of my eyes, but I never was much of baseball fan to begin with. As an adult I graduated from Boston College, got my driver’s license, have been very successful in the high tech field for the las 30 years. Currently I drive a 620 horsepower Corvette and have driven this car at 150 mph on various race tracks around the US. From the age of 39-49 I played Ice Hockey goaltender on a variety of mens ice hockey teams

    My only point to all of this is that your child, with the support and encouragement of you, can do whatever he sets his mind to, The key is for you to encourage him to try, sometimes he will fail, but that should never be blamed on albinism, sometimes we just fail. Over time, with the right direction, your son will learn what he can and cannot do, the key for you is to ensure that he is never afraid of trying. Today there are so many aids out there to make sure he can succeed at whatever he wants to do that there really is no reason for him to be afraid of trying anything.

    There is an excellent organization that can give you all the information that you could ever want about albinism, its call NOAH, the National Organization for Albinism and Hypopigmentation (http://www.albinism.org/). This site can be a great resource.

    I would be more than willing to talk with you further about my experiences growing up as an albino, if you would like to send me an email: orangekrush454@gmail.com

  12. We are neighbors in Holland! We love it here ;) But I have never been to Iceland… I have no doubt you will settle in soon. Sending you hugs, in Iceland.

  13. A friend of mine sent me the link to your post and I am so gad she did! I too am on my second trip to Holland, Iceland, you name it I am there! My daughter is six and has Rett Syndrome http://www.brooklynbuter.blogspot.com and my son who is now too wasborn 10 weeks early and had Down Syndrome http://www.bostonclarkbutler.blogspot.com (which we did not get the diagnosis until about 8 weeks due to him being so tiny. I do not know if you have read the “our flight landed in Amsterdam” http://niederfamily.blogspot.com/2010/10/amsterdam-international.html
    If you havent read it you HAVE too, I think you will love it!
    Anyway…it is great to “meet” you!
    Kelly

  14. I’m thinking of all of you, Hallie… As you know, Owen took us to “Holland”, and I have grown to appreciate all that I would have never seen and experienced, had we only stayed in “Italy”.

    How refreshing to read about your positive outlook, your spirit, and I hope you know how wonderful those extra stamps on JoJo, Teddy, and Geoffrey’s passports will serve them throughout their lives.

    Silver linings are hard to find sometimes, but beautiful when we find them. Hope to see you around town soon.

    Jamie

  15. I’m a mom of two adopted kiddos with albinism, and wanted to second the recommendation that you check out http://www.albinism.org. You’ll have lots of questions, and they have lots of answers. They also have published a great book “Parenting a child with albinism”. And they have a “First Responders” team, a group of volunteer parents who are available to talk on the phone with new parents such as yourself… these are parents who’ve been in your shoes and know everything you are going through right now. Please check them out. Its been an amazing resource for our family. Also, their is a Facebook group “Albinism Friends” that you could check out… great discussion there as well.

  16. Just found this via Love That Max, and couldn’t help but say that your son is beautiful! What a completely adorable face. Congrats on him. :) You must be proud of him, and justifiably so.

    Maybe this will sound odd coming from a stranger, but he is gonna be just fine. He obviously has a great family, and all the interesting people I know got that way in part because they had challenges along the way.

  17. […] few months ago, Ellen Seidman of Love That Max shared a post written by a friend of hers who had just learned that her son has albinism. He is the third of three children, and her […]

  18. Hi, I came across your post while meandering and I just wanted to let you know that you have the most amazing outlook and that that alone will translate to a life of happiness and security for your children that so many unaffected children wish they had. Geoffrey is going to be an amazing kid and you are going to find that his limitations now are what are going to send his creativity and IQ to a place you can’t even imagine.

    I was born with albinism and was never allowed (nor would I allow myself) any “special treatment” beyond what was medically necessary (glasses/ Lasik, large print or a close seat to the blackboard in class). Your son will create his own adaptations to understanding his environment and obtaining the information he needs from it in creative and novel ways. This will make him stronger than other students who have easily relied on one sensory input to process information. I’m not saying it will always be easy, but it is a gift if you choose to see it. I personally excelled in school (top 1% of my HS class), have a Bachelor’s and a Master’s degree from an Ivy Leave university. Not that he should be worried about this yet, but I’ve never had a lack of suitors and have always been considered very attractive (I am currently engaged, getting married next year). This after being told I had behavioral problems and getting kicked out of my preschool by people who chose not to understand I was more advanced and unchallenged (this was the 80s, not likely to happen to Geoffrey in this day and age). In essence, i am normal and Geoffrey is too and everyone is different in some way, whether you see it or you don’t. Don’t let anyone label him or tell you what he can and cannot do. Not to be trite, but most people are stupid and the odds aren’t good that you won’t get one of them trying to direct your son’s life.

    My suggestion is to relax, have fun with him and love him like you already do. Then give him as many opportunities to explore and cultivate talents, and don’t depend on doctors or so called experts to tell you your son’s limitations. With the availability of Kindles or e-readers where he can easily enlarge the print, he is a lucky boy to be born in a generation of easy fixes for whatever those limitations may be. You sound like fantastic parents and i wish you the best of luck with all your little ones.

  19. Hi! Thanks for commenting on my blog and connecting with me! I would be happy to answer any questions you have about albinism. If you haven’t already, check out NOAH, the National Association of Albinism and Hypopigmentation – http://www.albinism.org – they have tons of resources, as well as national conferences every other year (the next will be in 2014). It’s always good to connect with others. You could meet other parents as well as meet adults with albinism to see all the successful things that people with albinism do. Geoffrey is going to be just fine :) I’m sure it’s really shocking at first though!

    I also agree with the person above me. The advances in technology (and shifts in mindset) do make this a good time for Geoffrey to be born into. I feel like I have seen a huge shift even in my lifetime. Honestly, I’m in a highly competitive and visual field in school, and most days I don’t even think that much about my albinism b/c with new technologies for enlargement, etc, it’s just not much of an obstacle. And definitely don’t let other people impose limitations. It will happen because people aren’t always educated or aware, so just know that Geoffrey will be able to do just about anything he wants to.

    I saw that you gave me your number and email, so I’ll get in touch with you!

    ~EJ

    • Excellent! Can’t wait to connect with you.


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