It is devastating to be told that your child will likely lose her vision some day. The pricking of hot tears behind your eyelids when you think about it creates uncomfortable pressure on and off...pressure that I think will never really go away.
When Lucy was diagnosed with Bardet-Biedl last February, "Blindness," first and foremost, loomed out before us like an ugly monster the instant we first started to understand the syndrome. It was the scariest part of all that we heard...all that we researched...all we could understand. It was the the thing that brought on that ominous prickling behind my eyelids on a continual basis.
Schools for the blind.
Although there are many things associated with this syndrome, blindness and the words associated were the only things that stood out to us in all that we read and all that we talked to doctors about. Things like kidney failure, kidney transplants, mental retardation, obesity, and diabetes faded into the background, never coming fully into focus. Sure, we skimmed over them, but how could we see them when the word "blindness" loomed right in front in bold, black letters?
But time heals many worries. With the advancement of science, degenerative vision problems have such a brighter outlook. We are so close to so many amazing remedies in the eyesight area. And we are SO thankful for that. Dave and I are so comforted in knowing that there are outstanding people in the field of vision loss should we need it (and 95% of these kids do). And we are convinced that we can help Lu through anything that attacks those beautiful blue eyes of hers. We are so thankful for our new "cause" and are always looking for ways we can contribute to it. Sure, blindness will always be scary. Sure, it'll be horrible when she starts to lose more of her vision. But we are bracing ourselves and as of right now, her retinas are still ok.
The problem with that worry shrinking down a little bit is that other problems come more clearly into focus. Things you don't think about in the beginning when your cute little baby is darling as chubby as she is, and she doesn't seem to have any internal issues going on.
As Lucy grows, the word that looms out even more than the one that tells you your child won't be able to see is one that tells you your child won't be able to move and run like other kids...the one that causes kidney problems and diabetes and a whole myriad of other health issues: "obesity."
In a school class there is a blind child. People look out for her. Adults go the extra mile to help her. She has special aid to help her with her braille and to make her way through her day. Everywhere she goes people are aware of her needs, helping her when she needs it.
Now imagine a second child:
She is overweight....obese. The feelings you feel for that child are just so very different. They're more the judgmental feelings. "Why in the world do her parents let her eat enough to get like that?" "Can't she exercise more?" Blah, blah blah.
The other day Dave got an e-mail. It was one of those e-mails people send out to everyone in their address books. It was a picture of an obese child (obviously old enough to be walking) in a stroller eating an ice cream cone. The picture was accompanied by comments about how that is child abuse and how in the world could those parents let their child get so large?
Do those people have any idea what is really going on with that child? Do they know what's going on in that family? Sure, that child could be eating his way into oblivion without a care in the world. But, who knows? Maybe that parent is just like me. Maybe she's working on changing her whole family's eating habits to help this one child. Maybe she and her husband have outlawed the word "cookie" in their house and it is only allowed to be spelled out now. Maybe that mother is following the rule that if you have a child try things eight times they will begin to like it. So she is vigilant about putting things like fresh peppers and things mixed with spinach in front of all the kids in desperation to veer away the desire for continual sugar. Maybe that mother, like me, has begun to turn down even things that in her seemingly far-off past life were so harmless...fruit snacks, crackers, cheese... And in desperation, maybe that Mom let the poor child have an ice cream cone. Because, after all, at some point you have to give...even just a tiny bit. You don't want that child to sneak stuff or feel like an outcast because everyone around her is getting sugar galore. You have to have at least a snippet of leeway to let that poor child be "normal," even in the small way of having a piece of birthday cake at a birthday party or letting him/her have a piece of candy at a Halloween party. It's sad that "normal" is eating sugar and over-processed pre-packaged foods like they're going out of style.
It's so interesting for me and Dave to see our world work from different eyes: the eyes parents who worry about a child with a syndrome that "tells" her body to convert food into fat. It's interesting to see that everyone, and I mean everyone loves to gain a child's affection with food. People love little Lucy (I certainly don't blame them), but we've noticed that our world revolves around food. Everyone wants to give her a little treat here or a goodie there. It's baffling. And when we tell them she doesn't eat things like that they look at us like we're from outer space. Like we're such depriving parents. But in reality, what we tell our older kids is that when Lucy eats one piece of candy, her body translates it as being ten pieces. We just have to help manage what she puts in there.
The crazy thing is that Lu doesn't eat that much. She is a really healthy eater. On Halloween she got the "Trick-or-Treating" thing down...you go to the door and knock and they give you something, but it was all a game to her. She had absolutely no idea what was in those wrappers. She was content to just carry around a miniature Milky Way in it's wrapper the whole night. And really, why tell her? We're not depriving her, we're helping create a better future for her. We hope.
So, although Lucy is darling and squish-able and so incredibly sweet to us, we know that an eight, ten, or twenty-five year old who is squish-able is not really quite so darling. Kidney failure and diabetes loom large in front of us right along with blindness now, and we're giving it our best shot to beat the odds. We're betting with all our hearts that the strident efforts we're putting forth to create healthy eating habits will change her life for the better.
Because, man, we sure love that girl.