Friday, November 17, 2006

Enough

My friends, my extended family, they've got to be tired of saying "I'm sorry." I'm damn well tired of hearing it. I'm tired of needing to hear it. I am tired of my world changing on a dime, just like that. I'm tired of those phone calls. Too many fucking phone calls.

So you know what? I didn't even call anyone this time. I can't. I can't call everyone again with "unfortunate" news about my family, because I can't stand to hear the hurt in their voices. Hurt, followed by a whole lot of "I have no idea what to say" because who does?

So I'll just tell you, Imaginary Internet Friends, and you can say whatever it is that gets said in a situation like this and we'll go from there. Because frankly, this is getting a little ridiculous.

Yesterday, my sister Healy called me about her son, Charlie. The first words out of her mouth were, "It just never ends."

I hoped against hope that she was just fed up with something stupid, like traffic. Like a bad day at work.

Please be about traffic. Please don't be about Charlie. Please let Charlie be okay.

You may remember that in addition to dealing with my dad's death and the subsequent nightmare that has been selling his house, Healy and her husband, Brian went through a traumatic few weeks as their dog suddenly collapsed, was paralyzed, and eventually put down because of spinal cancer? And that they were dealing with having a baby boy at the same time?

What I didn't mention about them is that Charlie -- who is as happy and bright-eyed a baby as you've ever seen -- has had some difficulties. Challenges. He hasn't been hitting the developmental milestones on time, and his doctors wanted him to be tested.

It could be a lot of things, Healy said. Or nothing.

But as the course of our lives seems to be going, it's not nothing.

Charlie was diagnosed yesterday with something called Fragile-X Syndrome.

Are you fucking kidding me?

And here is where I lose my shit, and don't know what to scream about first.

Okay, okay. In case you don't feel like looking it up, here's what we know. We know that it is a genetic disorder that is present in Charlie. We know that it results, when symptoms are evident...

...well. The truth is, I'm embarrassed to write it, and I'm embarrassed that I'm embarrassed. This is my nephew, my flesh and my blood and --
-- and how can this be???
-- and Fragile-X is a form of mental retardation. The "good" news is that it is a mild form of mental retardation, or at least it can be. There's a lot we don't know yet. My sister will go in for genetic counseling on Monday and we will learn more, so I can't answer many questions. Any questions, really. The doctor "warned" us to not go reading all sorts of incorrect information on the internet. (Yeah, right. Too late!)

What I do know is that it's possible (maybe probable) that my sister is the carrier. She will be tested. If she is, then Samantha and I will also have to be tested. And if we are also carriers...

What if...what if...what if...

Do you have any idea how many questions this raises?

Healy has a beautiful, happy baby boy. Who has a genetic defect, the likes of which most mothers pray they never have to deal with. And she loves her son with all her heart and wouldn't change anything about bringing him into the world and so how does she reconcile any of this?

How can all these mothers out there have perfectly healthy, normal kids? And then even with all our losses, how can the three of us and my dad and my mom and their moms and dads and our aunts and uncles all be mentally "normal" and --
-- and even really fucking smart, thankyouverymuch.
-- and not have any signs and then there's Charlie and I don't even know what you say. This doesn't make him not smart, right? It just makes him delayed, right?

I don't want to feel sorry for him, or for Healy or Brian. And I'm not. It's just.

It's just.

I guess it's possible that he may only have slight learning disabilities. That's more "good" news.

And also -- ironically? fortuitously? -- Healy is the director of a teaching center for children with learning disabilities. So regardless of Charlie's diagnosis or prognosis or whatever, he will have the best teachers in and out of his home for his whole life.

But god damn. I can't help but feel like this is wholly and completely unfair.

Enough already.

Just, enough.

23 comments:

  1. You know, until you got to the end, I wasn't sure there was anything appropriate to say. And while that might still be the case, I'm going out on a limb and say it anyway....

    Really, if Healy has devoted her life to teaching children with learning disabilities, doesn't that say something about her as a person? And about the opportunity she has to provide Charlie with the best life he can possibly have? There are a a good many parents out there who struggle through and do the best they can for their children with disabilities. But to be able to help a child not only get by, but to thrive in spite of his genetic challenges, that is a gift.

    While on the surface it seems unfair, unfair to burden the family with what, right now, seems like an unnecessary load, really, it sounds like Charlie could not have chosen a better family to join.

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  2. There isn't anything at all wrong with feeling exasperated and at your wits end and wanting to beat your head against a wall.

    My hope is that discussions with the doctor will help to clarify what this is and what it isn't - what this means for everyone genetically and in the everyday in plain language, rather than docspeak - particularly for Charlie.

    What I know - what we all know from reading you and your site - is that whatever this means for all of you, you will come through with flying colors.

    But for now, it's ok to keep beating your head until you feel like stopping. Please just don't do it until you pass out. :)

    Thinking of you.

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  3. omigod. kiki, i'm so sorry you and your family are enduring another big challenge.

    i don't even know what to say. but i do know you and yours will make the best of what life hands you.

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  4. ugh.

    just remember while reading all the stuff on the internets that "my kid got diagnosed and treating him was easy" doesn't make a great story; it doesn't compel people to write so much. you're getting a *very* weighted view.

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  5. so sorry. Charlie, you and all of your family are in my thoughts. I wish something I might say could help right now...

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  6. I've read but never left a comment before, but felt I needed to this time. I worked with a boy with fragile-x syndrome for a year and a half. He was pretty severe (probably resulting from his poor home life as much as the disability), but he could love and he could learn and he could laugh. I know it seems like the end of the world (I've worked with a LOT of severely developmentally disabled children), and Of Course you should grieve and be angry because it Isn't Fair, but remember that your nephew will have a lot of strengths, too. Also, this boy that I worked with, his 3 siblings did not have fragile-x or learning problems. There's always hope.

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  7. What a very lucky little boy Charlie is to have a family that loves him so. And to have a mom who is in the wonderful position to do whats best for him. And to have an aunt that can feel so much for others.
    It will be alright. Relax. No matter what.
    Oh and be pissed, too. It is unfair.

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  8. Heartbreaking. My best to you and your family. Again. :-(

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  9. I'm so sorry. Sometimes it seems like life just throws you nothing but curve balls. But you will be able to deal with this. I have a good friend who has a child who is developmentally delayed, and while it is difficult, it's better than having one of those diseases that kills the child at a young age.

    "If life gives you lemons, make lemon drop martinis."

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  10. certainly heartbreaking in a way. wonderful for charlie that he has landed in such a fabulous family, but still hard for that family. the bum choices in the "best" case scenario is that you know about the fragile x before you're 24 weeks pregnant- i counsel pregnant women. but in that case, you can only decide to have the baby or not. i've seen charlie's photos, and really, happy and healthy is miraculous, even when it isn't exactly what we expect. good luck to you and your family- seek out good, supportive health care providers. it sounds like you are all on the right track.

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  11. Jillie of the Valley4:08 PM, November 17, 2006

    Darling,
    Please see http://www.cathielippmanmd.com

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  12. Kristy, This is a poem I read when studying to be a Special Education teacher. Please share it with your sister. All my thoughts as you get used to a new and unexpected place.


    "Welcome to Holland"
    By Emily Perl Kingsley, 1987. All rights reserved.

    I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    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."

    And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...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.

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  13. Hello, from an Imaginary Internet Friend. Please give your sister hugs from me. I am the mother of a severly disabled 2 year old with Rett Syndrome. It's been about a year now since we finally figured out something was amiss. Although I have read the Holland essay many times (and I do believe it's message, but god damn it, I still want to go to Italy) it still sucks big doggie doo doo, especially when you first get your diagnosis. On good days, (and I have many now), I think, what a gift! A window into truly learning to love without expectations and what interesting paths we are taking together as a family. On bad days, when I see Edda being passed developmentally by 8 month olds, it's just hard. I will be thinking of you and your family.

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  14. Perhaps you're looking at this from the wrong perspective. Perhaps this child has been brought into your family as a blessing and reward for some of the past heartaches.

    I've been around many developmentally disabled kids, and I can tell you from my experience, that the one thing they have little trouble learning is how to express their love to their families.

    Your sister works with developmentally disabled kids? Sounds to me like she has been preparing her whole life for Charlie's arrival... and now that he's here, the work and the fun can begin.

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  15. Kristi my heart goes out to you...my thoughts and wishes are with you.

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  16. Your post really touched my heart.You've had it pretty rough but don't give up hope. I think that you're lucky to have Charlie, whatever his circumstances. Love him, enjoy him, celebrate him.

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  17. So much at once! Keep your chin up with grace and strength as always. It must be a huge uncertainty for your family (can only imagine...)- but sounds like with you and your family he has all the support in the world.

    Best wishes from afar (nyc:)

    Kendra

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  18. Wow, there is so much I'd love to say to you but I'm thinking it's not the right time. I am a clinical geneticist. I am the person that says "don't go looking it up on the internet." The person who commented that people with good outcomes don't make websites is very, very wise. I will leave you with these two thoughts-- first, no one "has to" be tested for anything. You will make the choice when the time comes if it is important to you. Don't feel like you need to decide now, because you will go and get a bunch of numbers talked at you that are just confusing. Secondly, you don't know me, but I am an IIF, and if you need any answers "off the record", get in touch.

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  19. ...rather than try to say something to express my empathy...just thought I would pass along some accurate medical resources (I am a medical student and these are websites we commonly use in classes and for clinical summaries).

    emedicine.com
    http://www.emedicine.com/ped/topic800.htm

    medline.com

    Obviously your sister and you will be able to speak directly with doctors about this, but I know how frustrating that can be, so if you want to read accurate literature on the topic, these are great medical websites to consult.

    I think the most frustrating part about these kinds of genetic disorders is that the full extent of symptoms/effects is not evident for several years. I can't imagine what your sister must be feeling...what you all must be feeling.

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  20. Kristi,
    So frustrating, its been a really rough year for you and your family, but look at Charlie, the happy, adorable little boy you post about and share pics of, and as others and you have said he is in the best possible family he could be in. Scream, yell, blog away, we're here to listen. And then send imaginary internet hugs to you and your family.

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  21. Holland is pretty effin' great. More reality, tolerance, and love, less weight of the the history of Western Civilization in everything. Perhaps it's an opportunity?

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  22. I don't have any words of wisdom, I just wanted to let you know that you are in my thoughts.

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  23. Everything I could say just seems trite. I'm sorry this is such a hard time for you and your family. And while "a blessing in disguise" sounds horribly trite, maybe in this case it is true. Regardless, Charlie was sent to you and your family to teach you, as well as to learn from you. You may not get the blessings you expected, buy you will get blessings you could never have imagined. In Holland.

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