Tuesday, November 10, 2009

"weighty" matters

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.



Walking canes.

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."

Imagine this:

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.


  1. Man, I loved that post Shawni! We have been having some very small health issues with our kids as well and we have been trying to change the way our kids eat. It is HARD. I have realized that I have been rewarding my kids primarily with food (and let's face it, I reward myself with food too) and that isn't how it should be. I'm slowly removing things from our diet that shouldn't be there and adding more of what should be there. It is an adjustment for all of us but one that I feel really passionate about. I appreciate you sharing your story with such honesty, it is so refreshing! And I just love your little Lu, she has definitely made the world a better place to be!

  2. Shawni,
    This was such a well written post! I love reading about Lu! We've got an uncertain future ahead of us with a son facing a feeding tube because he isn't eating enough, but at the same time I'm trying to clean up our eating habits. Those things don't really mesh well together, and it is a constant struggle. It really it amazing how much of our interactions revolve around food. I'm definitely concerned about how my son will be treated with a feeding tube. Thanks for sharing your story!

  3. shawni you are amazing. can't wait to spend more time with lu. i'll be there in a week! yay!!

  4. you are good with words. I am sure it helps to write some of the things you are thinking and going through. You are amazing, and I will say it again, lucy is so lucky to have you and Dave. Sending you a hug and one for lucy too...xoxoxo

  5. Shawni, you don't know me, and I live on the other side of the world. I found your blog following a link from Values Parenting. I too have a child with weighty issues, and I have my own personal battles with food at times. My son has a very obvious obesity problem (he's 13years old, 5'6" and 308 pounds), but I have always packed him a healthy lunch. We actually were asked by his school to send junk food in his lunchbox, because he wanted things the other children have. It is weird to me that children (& adults) can be a healthy weight, but malnourished. They can be obese and malnourished, consuming food full of calories, but containing no nutritional value. And the parents focused on nutrition can be the ones singled out because of the way their child looks. It probably sounds weird, but I envy you Lucy's diagnosis. You have an explanation, an understanding and specialist advice. I seem to need to wait for the potential diabetes to eventuate before we can get expert help. It is really hard when from an uninformed outsiders view we look like we are abusing or child. Good luck changing your family habits to suit Lucy's needs, and thank you for sharing your family.

  6. Shawni, I hope and pray that everyone will be able to see Lucy for what she is...adorable, sweet, a friend, a daughter, a sister,and an absolute joy to be around. Love you both!

    p.s. She can sit on my lap during lunch any day!

  7. I just finished reading your post and in my mind I am thinking ... how lucky Lucy is to have a family that is so supportive and loving in every way. What a blessing she is to you, but please remember what a blessing you are to her as well!

  8. You don't know me and I don't know you. I just wanted to let you know that I think you are amazing. You have a beautiful family. Thank you for sharing with us.

  9. You did a really good job summing it up Shawni, The blindness is gradual, they really seem to get used to the loss- it is just a little by little loss. Carly just now is needing a cane at night - she is nearly 9. Ashley needed a cane a few years earlier - but needed a kidney transplant at 8, so just like everything else - they are all individual.
    It is okay to allow a treat - but encourage healthy foods. I swear my girls turn carrots into fat. But then if they had their way they would eat bread all day! I have to limit what I buy and hide any good stuff. We also all learned to eat VERY FAST - which I am sure is not good for us. We have a love-hate relationship with our kitchen. And- Xenical (Alli) really does help my girls, it stops the pounds from creeping up.
    You are so correct - it is the weight that is the killer - not the blindness.

  10. You did a really good job summing it up Shawni, The blindness is gradual, they really seem to get used to the loss- it is just a little by little loss. Carly just now is needing a cane at night - she is nearly 9. Ashley needed a cane a few years earlier - but needed a kidney transplant at 8, so just like everything else - they are all individual.
    It is okay to allow a treat - but encourage healthy foods. I swear my girls turn carrots into fat. But then if they had their way they would eat bread all day! I have to limit what I buy and hide any good stuff. We also all learned to eat VERY FAST - which I am sure is not good for us. We have a love-hate relationship with our kitchen. And- Xenical (Alli) really does help my girls, it stops the pounds from creeping up.
    You are so correct - it is the weight that is the killer - not the blindness.

  11. Without a single doubt in my mind, I know the Lord Jesus KNEW, HE ABSOLUTELY KNEW, that you two would be the PERFECT parents for your precious Lucy.

    Thank you for this post.

    Thank you for reminding us all of things we take for granted.

    Thank you for making us AWARE.

    How could you NOT love that baby girl!

  12. You don't know me, but my friend, Tanya Boyer, sent me a link to your blog. We have a 6 year old daughter with ring 13 chromosomse...another chromosomal anomaly that doctors know very little about. We (you and I) also share the same faith. Reading through your blog brought me to tears, dredging up so many feelings from the disgnosis/figuring it all out stage. It is quite a process, and it continues, but it does get better. :-) I would love to email you personally....I know of an endocrinologist who studies pediatric obesity in children with chromosomal anomalies. Drop me a note when you get a minute...osguth@gmail.com

  13. What a real, touching post.

    It is so important to us to teach our children to look at all people with the insight you share--don't judge because you don't really know anyone's story. Thank you for your words. You are an inspiring mom and your love for the Lord, Lucy and your entire family is so beautiful. Thanks.

  14. What a great post Shawni -- We struggle with hypothyroidism (and maybe other issues) with one of my sons. And no matter what we try he keeps gaining. We have made so many changes in an effort to help this child. And while everyone in the house is maintaining their weights on the same diet, my poor son gains 25 pounds in a 3 month period of time. He doesn't eat that much or that bad. Sometimes is just plain heartbreaking as a mom to watch your sweet child struggle with an issue that so many people judge them for. And kids can be sooooooooo mean. Makes me sad.

    Hey, email me if you can. I got a new computer and lost your email in the process. Just want to hammer out Saturday.

  15. I have a son with type 1 diabetes. Type 1 has nothing to do with diet. Because people confuse type 1 and type 2, people think it is because of his diet. And they think that if he'd just eat right, he could go off insulin shots. None of that is true.

    So I know what you mean....

  16. Well said, Shawni!

    I admire you and your husband for being so strong in facing all of the obstacles Bardet-Biedl places in Lucy's and your family's hands. Lucy is so blessed to have you both for parents. Thanks for being such shining examples. Your light shines in Lucy's eyes!

  17. I agree with you and I feel for you.
    When you make blanket statements like the ones expressed in your email example-- it is most often in ignorance. It is hard to have a child who is different no matter what their issues are(and it is especially hard when they appear "normal"--that's when you really get the insensitive comments!) You are a great mother and you are doing a fantastic job.

  18. Oh Shawni you are so right all the time! I always try and tell my kids not to judge people even if they are being really mean because you just never know what is going on at home with them. I just think Lucy (and the rest of your kids) are so so lucky to have you and Dave for parents!

  19. Lucy's sweetness will always be a part of her, lighting up her face. No matter what, people won't be able to help falling in love with her!
    My younger brother {now in his 20s} has Down's Syndrome. Although he's not a cute "little" guy any longer, he's a darn cutie and people can't help but respond to his happiness and enthusiasm for life. I'm convinced there are some extra special souls in the bodies that otherwise aren't perfect. These kiddos can teach us some amazing things!

  20. Love these thoughts, even though they're so hard...yet reality! You are doing an amazing job of keeping that little girl's eating habits in order and keeping that metabolism up on the good ol' trampoline! Ahhhh!

    I am a witness to the fact that she doesn't eat much. It's so unfair! Still...good for you!

  21. Shawni,

    This is a poignantly real post. I struggle with my own daughter in the opposite regard...getting her to gain a pound in an entire school year...another of your commentors mentioned a feeding tube. Pookie was fed by feeding tube til she was five...anyway, you gave us a reminder, too, to be careful in our judgments of others. Thank you for the reminder!

    I know I'm down here at the bottom of the comments, but I also have a plea for you --- you were so amazing at sending me the email to your friend who does the jewelry but whose blog is private...Shawni, I CAN'T FIND YOUR EMAIL telling me her contact info. I apologize a thousand times, but can you send it to me again? (Please please and sorry sorry sorry!!!!)

    Many blessings to you...

  22. What a great post. You have so many down to earth insights that I can really appreciate and relate to. It is very difficult to have a child with an unusual problem. However, it is such a blessing to me and many others when you write about your experiences. I am quite sure that your words have and will strike a chord with many readers. Readers who similarly have been gifted unique challenges to overcome in this life. Thank you, Shawnii!

  23. Thanks for writing this Shawni. It is so good to be up to date on Lulu.

  24. Shawni, it is so great to check in on your blog! What a stalwart woman you are! I loved this post. We've been from outerspace when it comes to food for many years now. I'm happy to say that after years of teaching our children that we are to NOURISH both body and spirit that they are ok without sugar and processed foods. We don't eat perfectly every day, but we're getting better and better. Keep it up!!! Darcie


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