
So I mentioned in
last week's post that I was reading
Bloom (finding beauty in the unexpected) by
Kelle Hampton and that it was helping me fall asleep (perhaps implying it was boring). I never read her blog, but I'd heard about the book and thought it would be up my alley in the sense that I like to read about how people overcome hardships. It's inspirational for me and I like to be reminded that I should be grateful for my life. See, she had a baby who was born with Down syndrome, Nella, and she was
totally not ready for this. I thought the book would detail the hardships, the sorrow, the awful feelings, the difficulties.
It wasn't like that at all, though, it was mostly about joy and how she had so many friends that helped her through it, and so, yeah, it was a little boring, til somewhere along the line, about halfway through, she seemed to dig deeper into the challenging feelings she was having and it started to hit me. And I saw, too, that including so much
good stuff is really necessary in her telling her story.
Sure, in the beginning, she admitted some pretty heavy feelings of disappointment that Nella was not the "perfect" baby she'd imagined, even saying she wanted to take her older, "normal" child and run away. I totally got this and didn't judge at all. I am pretty sure I would have felt the same—and worse. But the sadness in the beginning was quickly (and I mean
quickly) trumped by the fact that she had a really, really strong support system of friends and family. Hampton is one of those women who is really into ceremony, pretty things, celebrations, making big, crafty, coordinated deals out of stuff—which is soooo not me and was mildly grating at first. But, in a way, it made her memoir all the more intense because of the contrast that provided when she didn't have the "perfect" baby. In the end, though, her flair and attention to beauty, and her inclusion of her baby Nella in her cutesy ways, I think was part of what helped her overcome the emotional challenges of the situation (that and her network of friends). Hampton just tried to approach life one day at a time and keep things are "normal" as possible—and Nella is absolutely adorable in the many pictures included in the book.
It wasn't the friends and the keeping things normal and the one day at a time that hit me most, though, it was her observations toward the end, after she faced thoughts of the future, realizing having an older child, or grown child with Down Syndrome would be very different from having a baby with it. She says:
The thing is, we don't really know what the future looks like. And that thought takes my breath away just as much as it calms me into a place where I am forced to enjoy this very moment.
How true are those words for
anybody and everybody?
And what really got to me, and what is really lacking for me personally, is her revelation about the interconnectedness of people. She says:
I realized that day, for the first time, that finally Down syndrome meant something to me beyond my own girl. It was a part of my life, but I recognized it was a part of a lot of other people's lives too. And if it wasn't Down syndrome, it was something. I felt connected to everyone there is a way I hadn't in a long time, but I also felt guilty—ashamed that it took my own pain, my own connection to this new world to bring me here, to the larger picture...
...Since Nella was born I have contemplated my own selfishness and the need to feel comfortable in life to the point that I could write a thesis on it...challenged myself...to...open my comfort receptors to the vast degree of misfortune that exists in the world but ultimately thrusts us toward growth and understanding.
Just when you think someone is all matching jumpers, hot pink flower headbands and fluff, they go and drop serious knowledge like that on you, and you, too are so humbled. (At least
I was.)
In researching for this post, I Googled "Kelle Hampton" to try to find other reactions and material on the web, and was a little surprised to find Google self-populate with terms like "
Kelle Hampton hate" and "
Kelle Hamtpon annoying." How can you actually
hate on someone with a disabled child who is earnest and sweet and open, no matter what little personality clashes you may have with them? It seems like other people with disabled children feel they have license to hate because they're living it, too, and they resent Hampton's alleged veneer of "perfection." That's their prerogative, I guess, but it rubs me the wrong way in much the same way the
Scary Mommy book in that it seems like so much bitterness and sour grapes to hate on someone who is "doing it," who is happy and having success, and totally rocking it. And make no mistake, Kelle Hampton set out to "rock it" with mothering Nella (and her older child) and she
is. She worked hard putting herself out there and with fundraising for others before that baby was even a year old! She glows, her children glow and she is inspiring!
Bloom reminded me of the importance of people coming together, the importance of being open. I have a tendency to close myself in. To think I am so different from most people. To be judgmental. Even when I try to
work on my spirituality for a couple of weeks, I then backslide into my old self. I shudder to think of what awful lessons and pain I might have to suffer through to internalize the lesson I obviously need to learn. I stop myself and am so grateful I have not, so far, had to suffer, and think I better take the lesson from books as I can and get more serious about an attitude change.
POSTSCRIPT:
I think if I had a child with Down syndrome, I would end up approaching it just the same way Hampton did in terms of trying to live life and "normally" as possible. Dressing the kid up cute. Doing as much as you could do NOT differently. I, too, would have trouble with support groups and I wonder if I would "succumb" as she did. I remember when I was pregnant I had what I felt was a "scare" about Downs syndrome. That she didn't test is huge, to me. I would always test, which I know says something kind of awful about me that I just don't know what else to say about. At the same time, I think that if I birthed a baby with a disability such as this, I would, too, fiercely rise to the occasion. Following is an old blog entry from that time.
From February 2007
So I’m feeling a little wacked out with what I guess are typical pregnant mom worries and just need to get it all out.
My stats: I’m 34 years old, 21 weeks pregnant with my fist child right now, will just have turned 35 when the baby is born. In my first tri, I had the nuchal fold screen for Downs, etc. done and got back very encouraging results showing a very low risk (like 1 in 6,000).
Then at the appropriate time, I got the quad screen. When my midwife called to tell me the results, she told me I was negative for NTDs and Trisomy 18, and that we didn’t need to worry about the Downs results, since I had already had the nuchal fold and those were so good. I accepted this at the time, and we discussed how the nuchal fold tests were much more reliable than the AFP/quad screen tests for Downs. But, what she did NOT tell me was that the results from the AFP were actually in for the Downs risk and they showed an increased risk of about 1 in 135 or something. I just happened to find this out yesterday when I came in for a checkup and actually looked through my chart myself.
Now, I understand that the AFPs are notorious for “false positives” and that the nuchal fold is better for detecting Downs, so I shouldn’t worry. And I understand that this is perhaps why the midwife who reported the results of my second screen reported them in the way she did…perhaps to avoid alarming me. I spoke to another midwife at the practice yesterday, and she concurred that I should not worry about the AFP results because the nuchal fold results were so good. She even said that once patients get the nuchal fold, they don’t even usually get screened again with a quad that includes Downs, but only a screen for NTDs.
But, I still am feeling a little weird about all this…I really don’t think getting an amnio is a good idea at this point, since by the time I get the results, it would be too late to do anything about them. So, I’m just trying to have a positive attitude and trust that all will be well…
I decided to go for an ultrasound as soon as possible, just to sort of assuage my fears by looking at the little organs and stuff, and since I heard that the 20-week ultrasound is standard practice in the traditional medicine. We’ll see how that goes. For now, we’re off to New York for a weekend getaway.