Aubrie's Angels

You probably remember hearing me talk about my fabulous friend Mollie. She's amazing and hilarious and if you like this blog, you'd probably like hers (maybe even better; she's that amazing). On her blog, you hear about Daxton (who "wasn't ready for the world," born at 23 weeks, 5 days) and Tyler (for whom "the world wasn't ready," the big ole full-term chubster that he is). Each of these boys is in the running for Becca's arranged marriage partner. But on Mollie's blog, you'll also hear about Dax's twin, Aubrie, who was born at 21 weeks and really, really wasn't ready for the world.  Sadly, she only lived in this world for about a day.

For the past two years, Mollie has been trying to figure out how best to commemorate and honor Aubrie's brief yet beautiful life. A few weeks ago, THE idea hit her, and Aubrie's Angels was born.

I've whined mentioned before that having a kid with developmental issues involves a lot of extra costs, even if insurance covers everything medical (which is usually doesn't). With Becca, there is/was all the food we had to special order, the thousands of dollars in gas to get to and from all the therapy and doctor appointments, the special clothes, the adaptive gear, the therapy tools, and the toys.

"Toys?" you say? All kids need toys, right? And most of the kids we know have far too many toys! True, but for kids with special needs the right kind of toys are very important. Preemies and other special needs kids need toys that appropriately stimulate their various senses and specifically work their developing skills. (Think about it: it's not like you can tell an infant or toddler to do 10 reps of a certain motion, like you can do in adult physical therapy. You have to provide him or her with the motivation -- on their level -- to do perform the desired activity again and again.) I can't tell you how many times we've been in a therapy session, and the therapist has suggested and/or asked us to get a particular toy to use in our home therapy exercises. I'm a sucker for any excuse to buy a gift for Becca, but these toys (often premium or specialty brands) don't come cheap. While money doesn't exactly grow on trees here at Itty Bitty Hill, we manage. For many other families, though, the cost of these toys is downright prohibitive, and their kids go without the extra help of these important developmental and sensory toys. So these kids, already at a disadvantage because of their early birth or other special needs, fall farther and farther behind.

But you can help! As one of Aubrie's Angels, you can donate to help provide very special Christmas gifts that will benefit these kids throughout the year. In their first year, Mollie set a goal of collecting 100 developmentally-stimulating toys, and Aubrie's Angels across the country have stepped up to the challenge, almost meeting our goal already! But we'd also love to provide each child with a developmentally-appropriate book to go with their toys...because we at Itty Bitty Hill know the tremendous effect reading with a child can have on all aspects of development. And since I want to make any gift you give to Aubrie's Angels go even further, I am happy to use your monetary donations to purchase Usborne books at cost to give to these special kiddos.

And look what your small (or large!) gift will provide! A gift of $3-$7 will provide a basic learning board book (ABC's, 123's, etc), a visually-stimulating "Find-the-Duck", etc book, a special touchy-feely board book, a first-learning workbook, or -- so important to this population -- a book about going to the doctor. A gift of $10-$12 will provide a deluxe Touchy-Feely book, a first word dictionary (great for kids with communication delays) or the ever-popular Animal Hide-and-Seek, with flaps AND touchy-feely patches, (ideal for a toddler with sensory and fine motor issues).  Your generous gift of $20 will provide The Complete Book of Farmyard Tales, which includes 20 stories with 2 reading levels and a read-along c.d.* I'll have to get this order in soon, so take a minute now to donate securely by clicking on the link below. Thanks for helping to honor baby Aubrie by helping some special kids -- you truly are an Angel!

*The books listed are intended to give you an idea of how far your gift can go. I will work with Mollie to choose books that are best suited for the individual child who will receive them. If you'd like your contribution to be used for a particular book, please indicate it in a comment on this post. Thank you!

On [Not] Being Normal

Warning: the blog post you are about to read could be interpreted as being whiney. While I am a champion whiner, please know that my intention to help you wonderful readers understand my experience of parenting a little bit better. You've been warned. :)

Recently, I have had several well-meaning mothers inform me that there is no such thing as a "normal" child.

I beg to differ.

I am well aware that each and every child on this earth is a unique individual, created by God and in need of an individual type of nurturing that respects his or her individuality. We're individuals. Got it. And yes, your child is very, very special. I'm not saying that normal kids are cookie-cutter kids.

But...claiming that there is no "normal" trivializes my experience of motherhood - and Becca's experience of growing up different. You see, if you say there is no normal, you imply that there is no abnormal. And while my child is no more special than yours, our life together is, simply put, not normal. I can't recall ever hearing a mother of a child with special needs saying that there is no such thing as a normal kid. We moms know all too well what it's like to be abnormal. And even excepting the extraordinary circumstances surrounding Becca's birth and the first 4 months of her life spent in a hospital, Becca is still not a normal child.

People accustomed to normal children simply do not get it. For example, I was at lunch with a group of friends the other day. They asked how Becca was doing, and I said that she was doing well. In fact, she's doing so well that she ate 3 whole, fresh strawberries at lunch the day before. I made this announcement with great bravado and was met with not congratulations, high fives, or exclamations, but...silence. When I explained that we have been in therapy 3 times a week for months in order to achieve such a milestone, they did warm up a bit, but they were nowhere near as impressed with my child as I was. Because they don't get it, even though they are lovely, compassionate people. Why should they understand? I didn't understand until little missy came along.

A normal child eats when she is hungry. A normal child loves to play with messy food. A normal child probably has to go to some kind of therapy at some point in her childhood, whether it's speech, occupational, etc., but probably not 5 times a week, indefinitely. A normal child has some quirks, but they usually don't interfere with basic life necessities. A normal child may be big or small, but is on the growth chart somewhere. You know, with a height that isn't so low that it's in the weight section and a weight that is in the box with the Abbott Nutrition advertisement. (Moms out there know what I mean.) A normal kid is allowed to be around other normal kids. A normal kid gets to make friends. And go play. And check out library books (not that there is any shortage of books in our house these days!). And a normal mom gets to drop her kid in the nursery while she goes to church, to the YMCA, to Bible study, to a mom's group, somewhere, anywhere, outside the house!

Normal is not:

• Trekking 32 miles round-trip for 4 therapies a week, in addition to 1 in-home therapy each week.
• Regularly travelling 80.8 miles round-trip to be seen by 6 specialists.
• Wearing 6-9 month clothing (yep, she's moving up!) 20 months after you are born.
• Not being able to bring yourself to let someone put a spoonful of food in your mouth no matter how much you want it because people shoved tubes down that same mouth for months and months.
• Not being able to function when you get something on your hands because your sensory system didn't have time to develop. Seriously, she f.r.e.e.z.e.s if her hands get anything wet, sticky, or squishy on them, though she is improving here as well.
• Not crying when you get your toddler shots.
• Having to quit your job and set your career aside because your child is too medically fragile to go to daycare. (But I'm really not complaining about this one. It kind of gave me permission to do what I secretly wanted to do all along. But having to do it is still unfortunate.)
• Then having to start a home-based business because you're having to tap into savings because you've had to leave your professional job behind (see above) and you can't afford the ancillary expenses of having a child with special needs (see below). [The business, by the way, is going well.]
• Spending beyond your means to special order food from California (most of which becomes very expensive dog treats), repeatedly fill the gas tank to make it to all those aforementioned appointments, pay premium for the few clothes that actually fit because you have an infant-sized--toddler-shaped child (thank goodness that the grandmothers help out here, along with copious amounts of hand-me-downs), purchase the therapeutic supplies and toy that the therapists "prescribe," and so on and so forth and so on and so forth. See why the break we got with TennCare is so important? And how we'd be s-c-r-e-w-e-d if we ever lost our health insurance (cough, cough REFORM, cough, cough).
• Evaluating every cough, sneeze, sniffle, warm forehead, inexplicable fussy time, or clinginess to make sure that this isn't "the big one" that you fear and secretly expect to come about.
• Counting your child's calories and nutrients -- and feeling her ribs when getting her dressed -- because if she doesn't gain weight, the doctors will cut a hole in her stomach through which food will be deposited.
• Crossing your fingers that your child will walk before her second birthday and doing exercises every day to boost the chances that she will.
• Becoming a mind reader because your toddler communicates even less than other children her adjusted age. Okay, all moms of toddlers have to become mind readers...but our mind reading phase is lasting longer than most. Thank goodness for baby signs!
• Pondering whether or not you should soon begin giving your child daily injections that you will have to continue for the next 12 years in order to give her a fighting chance at breaking 5'.
• Having to plan your life around your proximity to a major children's hospital because your child will need special care for years to come.
• Having to plan your life around your proximity to your high-risk obstetrician and a top ranked NICU (not just any NICU will do for Hill babies, we now know!) because of the high risk that you and/or your child could have very, very serious complications if you were to become pregnant again.

At the same time, though, Becca does lead a more normal life than many other children. We do expect her to eventually do all the things that other kids do. I mean, she probably won't be in the WNBA, but she'll walk, talk, run, go to school, make friends, eat, play sports, dream of being in the Olympics (I'm thinking ice skating or gymnastics - or both, but no pressure), go on dates (if she wants to), go to college (is she can), get married (if she wants to), make me a grandmother (if she wants to...I guess...but if I had to choose between this one and the Olympics, I'd go with the grandbabies, but not until she is settled in a quality relationship (preferably a marriage) and old enough and ready to be a mother herself. But I digress.). And right now she's not on oxygen, not hooked up to any machines, is able to get herself around, and is able to live at home. I know that we are a lot closer to normal than a lot of families. And I am grateful for it. And because I am grateful for it, I will not minimize their challenges by saying, "Oh, all kids have challenges and everyone has their own special needs."

I don't know; maybe I am complaining. I guess I am. What bothers me is not Becca (duh). What bothers me is not even the fact that we deal with all of these difficulties. She's so beyond worth it. What bothers me is when people think they understand and try to skim over the difficult bits of our lives. It seems like it's easy to do now that Becca is doing so well. She looks so good and strong, and medically, she is doing great. But there is far more to the story than meets the eye. Ans so when people miss that fact, like when they laughingly say, "Oh, there's no such thing as a normal kid!" (or when they question the decisions I make on behalf of my child - like whether or not to take her to public gatherings, etc. - but that's an entire post in itself!), I get frustrated.

Those of you who know me personally know that I have never tried to be normal. In 5th grade, I got in trouble with our DARE officer who thought my self-esteem was low because I took being called "weird" as a compliment. (Why he got mad at me for it, I don't know. My pastoral mind now has some questions about his own self-image!) I've never before wanted to be the same as everyone else. But frankly, since that first maternal-fetal appointment in April of 2008, that's all I've wanted to be. Normal. Someday we'll get there. If you are there now, please be thankful. And be careful what you say to those of us who aren't.

The Big Reveal

I mentioned the other day that I have a new venture in the works...and it's ribbon-cutting time!

I am thrilled to announce that I am opening a bookstore! Welcome to the grand opening of Itty Bitty Books! Of course I'm not actually opening a brick-and-mortar bookstore, but I've found the next best thing. I am a new independent consultant for Usborne Books & More, the publisher of Usborne and Kane-Miller books. It's a bookstore that I will be able to run from home, while juggling all of Becca's needs. Hopefully I'll be able to contribute to our family's finances while still having plenty of play, cuddle, and therapy time with our Itty Bitty...and I get to help my friends and family provide these awesome books to the kids in their lives.

Usborne books really are great. When Becca's occupational therapist asked me what Becca's favorite toys are, I realized that they are not the fancy electronic light-up ones, but are (aside from every door in our house!) her books. She particularly loves her Usborne Touchy-Feely books in the "That's Not My..." series. We've got "That's Not My Puppy," "That's Not My Fairy," "That's Not My Penguin," "That's Not My Monster," "That's Not My Monkey," and "That's Not My Princess," and that's not all of them! She loves feeling each of the different textures, and her therapists agree that it's great for her (and any small child). In addition to the Touchy-Feely books, Usborne has some really interesting fiction and non-fiction titles that inspire curiosity and a love of reading and learning. There's an entire section on the site for pirate books! How fun is that?

The Kane-Miller line includes stories from around the world, introducing kids (and their caregivers!) to different cultures while engaging them in a compelling story. They teach kids that we live in a world that is big and small in which our differences and our similarities ought to be celebrated. Not to mention that the perennial favorites Everybody Poops and The Gas We Pass are Kane-Miller books! (Turns out they are from Japan - I never knew!)

Anyway, as you can tell, I'm really excited about this opportunity. I get to play with kids' books and take care of Becca full-time. And I earn free books while doing it - perfect!

Of course, though, I need your help to make Itty Bitty Books a success! There are 5 ways you can help me out right now:

1. Shop my first "e-show" by visiting this link and making a purchase. 80% of the titles are under $10, so take a look and pick a few. Remember, books make fabulous gifts that are easy to keep on hand - I highly recommend passing the "That's Not My..." series on to new parents or parents-to-be!

Here's the address for the sale:

www.ubah.com/HOS166928 2. Share the link for the e-show with your friends, families, co-workers, facebook friends, etc! If your order totals $85, you get $15 in free books - so gather some orders from friends, place them in one order, and get free books! This is also a great way to save on shipping. 3. Contact me about hosting your own show! As the host/ess you earn free books based on your guests' purchases - and you get a chance to gather your friends and explore new titles together. If you book in the next couple of weeks, your show is likely to qualify for a double merchandise allowance - meaning that you would get twice as many free books as you normally would! This is a GREAT deal, but I can only offer it in my first few weeks as a consultant - so contact me quickly! E-mail me at ittybittybooks (at) yahoo.com, call, send me a facebook message, or leave me your contact information in a comment (but make sure to leave the info - I can't get it from Blogger). Feel free to pass this contact information on to your friends. In fact, if you refer someone to me and they book a show, you'll get a free book for yourself! And here's a perfect opportunity for my blogosphere friends: if you are long distance or unable to host an in-home show, talk to me about hosting an e-show; it's really simple. Unfortunately, though, you wouldn't get the double merchandise allowance, but you'd still earn lots of free books. 4. Take a moment to think about whether you or anyone you know might be interested in signing up as a consultant. The start-up costs are low, and there are no monthly minimums. The first 2 people who sign up with me will get their start-up kit (including 31 books!) for 1/2 price - it's an awesome deal! I'm really hoping to find a few folks to be in business with me, so if you are curious please drop me a line. And I promise not to be pushy. ;) Again, feel free to pass this information on to friends or contacts! 5. If you have a connection with a daycare, preschool, elementary school, or library, please let me know. I am an educational consultant, meaning that I can sell to schools and libraries, and we have specially bound books for this purpose. Thanks so much for your support - whether you are able to purchase or not, I'd really appreciate your encouragement and your forwarding this message on. As we anticipate increased medical bills for Itty Bitty in the coming year (remember the TennCare debacle?), I'm trying to help us get a little financial breathing room, if you will...and introduce you to our favorite books at the same time. I'm having fun already, and I hope you can join me in some way! Nancy Speas Hill Usborne Independent Educational Consultant #G3233 It's a rewarding experience when a child opens a book and discovers the magic of reading.