This Day

On THIS DAY, four years ago, my little girls came home to be with their family.

I am feeling really sappy and sentimental this year, for whatever reason. Maybe it's because I just came from their preschool, where they are celebrating their birthday with crowns and a special story at group time. I took in our poster from the fashion show, and a picture of them from their homecoming day. I told the class Holland and Eden's (very abridged) story about why today is a special day for us. The girls took the picture and poster around the circle to show the children. I don't usually get emotional about the story anymore, but today it felt different and I actually found myself tearing up. Maybe it is because of what Holland and Eden BEING in PRESCHOOL represents to me. It's been such a long journey, filled with such complex emotions...an intricate intermingling of intense heartache and supreme joy.

Sometimes it feels like my heart might burst for the love and pride that I feel for them, while still at other times my heart breaks for what we have been through, and what pain and grief and sorrow we have yet to endure.

My heart nearly burst with pride at Eden's IEP last Friday, when her speech teacher was going over the results of Eden's most recent language evaluation.

On the CELF-P she had a receptive language score of 91 (within normal limits), and an expressive language score of 85 (within normal limits), for a total language score of 87 (within normal limits). On the PLS-4 she had an auditory comprehension score of 98 (within normal limits), and an expressive communication score of 86 (within normal limits), for a total language score of 91 (within normal limits).

Let me tell you...I know a LOT about test scores. I know these scores are at the lower end of the "normal" range. I know that kids with scores in the 80s often have a difficult time in school. I also know that Eden is exceptional.

Can you imagine? A child who is PROFOUNDLY deaf...who has spastic quadriplegic cerebral palsy. To score "within normal limits" on a language test standardized on "typical" kids her ACTUAL AGE of 4 years 3 months! That's HUGE!

Also huge is the improvement she has made in the last 7 months when she was previously evaluated. In every language area we have seen her scores go up between 10 to 15 points. We're talkin' one whole STANDARD DEVIATION worth of improvement in seven months!

She's awesome.

On the flip side, my heart nearly broke at the Princess and Superhero dance that we attended this weekend. The kids were playing a game called Switch, where they danced with a partner until the DJ called "switch" and they all traded partners. Holland was still warming up to the idea of dancing, but Eden rushed right onto the dance floor in her pony walker with a smile on her face and her hands out, ready to join in. But nobody would be her partner. It made me so, so sad.

I don't fault the other kids. It's not necessarily that they don't want to dance with her, they just don't know what to do. I was so appreciative that John got out there to dance with her, and that a couple of other moms brought their kids over saying they needed a partner. I was also grateful to Spiderman who grabbed one of her handlebars to pull her along on the "train", and to Belle, who recognized that she is Eden's hero and spent a lot of time dancing with her and encouraging the other girls to dance with them as well.

Holland and Eden still don't really notice their differences. They are just happy to be here, and to be a part of the action. But someday they will notice. They will notice that they are different, and that their differences make people uncomfortable. They will learn that not everyone is kind, and not everyone loves them and wants them around. They will learn that there is still so much discrimination in the world.

But for now we will focus on THEIR world. A world where everyone loves them. Where they are the life of the party. Where people are kind, and caring, and helpful. A world where I am a Superhero, who can heal their boo-boos with a kiss, who can make everything fun, and can protect them from all of the bad in the world. If only it could last forever.

Happy NICU graduation day girls!

I'll continue to do my best to make this world a happy place for you.

A Few of My Favorite Things

"Raindrops on roses and whiskers on kittens, bright copper kettles and warm woolen mittens..."

I love that song. It came on the radio while I was driving this evening and was a gentle reminder that it's time to get my butt in gear to start my shopping!

I have a couple of really inspired gift ideas for all of you.

First, I recently got another really fabulous personalized necklace from Lisa Leonard. Lisa is mom to two adorable little boys, one who has special needs, and she also happens to make the most beautiful jewelry. My first necklace designed by her was the open circle, and my new necklace is the teenie tiny initials. I LOVE it! Actually I love so many of her pieces that it's hard to decide what to buy. Make sure you check out her jewelry designs, as well as her beautiful family, photos, and blog. She is such a talented person and I really admire her! You can save 10% off your next piece of Lisa's handmade jewelry by entering the code "tellafriend" at checkout. Make sure you tell her I sent you:)


My next awesome gift idea is a super-duper everybody-wins buy. My friend Greta has designed a truly incredible 2009 Calendar titled Heroes of Hope, which features babies and children who spent time at the Neonatal Intensive Care Unit where Holland and Eden spent the first 110 days of their lives. The girls make an appearance in the calendar, which will be debuting on Thursday evening at the Fashion Show, and 100% of the proceeds from the calendar will go to the NICU Family Advisory Board to provide support to NICU families. Greta is mom to triplets, and somehow still manages to be an amazing photographer, as well as super stylish and sassy. I am so impressed with the quality of her work. Anyone who would like to make a contribution to the NICU Family Advisory should purchase one of these calendars. They are truly fabulous!

Current Events

Gosh, it feels like it's been a really long time since I sat down and wrote a proper post. It's kind of like when you haven't cleaned your house in so long, that when you finally have time to do it there is so much to do that you don't know where to start. So then you get discouraged and just give up all together, which just makes it that much harder next time! You know?

We've finally gotten into a (sort of) comfortable routine with me back to work and the girls in preschool. The last couple of weeks in particular have been busy, with preparations for Halloween, the upcoming NICU fashion show, and me obsessing over election coverage and political issues. I am obviously happy with the outcome of Election 08 for a multitude of reasons, not the least of which is that it gives me hope for a brighter future for my kids. So, I guess we'll be sticking around for now;)


Preschool is going swimmingly well for both girls. I am really happy with the girls' teachers and Eden's one-on-one aide. They all have really positive attitudes and are very open in listening to my concerns and being generally helpful. It really is so much better than it could be, and I am oh so grateful for that. I volunteer in the classroom once a month, and either John or my mom will volunteer once a month as well. Today was my second time and I helped at the pet rock table where we actually made pet rocks and wrote little stories about them. It was quite fun. The girls get a kick out of calling me "Ms. Billie" when I am at school and it is so funny.

Both girls know all of their colors, shapes, numbers up to 10, can spell their names, and can recognize most letters of the alphabet. They are learning the letter sounds, and seem to be pretty on track with verbal learning for their age. I'd say they are near the middle of the class in terms of what they know, which is great considering that if they'd been born on time they wouldn't even be four yet, and there are some 5-year-olds in their class. They are definitely behind in terms of fine and gross motor, so their writing/drawing skills are probably the lowest. Holland can write the first four letters of her name (very large), and Eden can write the letters E, M (for Mom), O, and T. Writing is going to be hard for both of them, but hopefully with practice we'll continue to make progress.

The biggest issues we have had at school are with getting a proper car seat on the bus, and getting a swing on the playground that Eden can use. You'd think these are pretty simple things to do, but seeing as how they STILL have not happened, I guess not. We are making due for now with a STAR Seat (which I actually think she sits pretty good in), but we've been told that the district is going to get her a more supportive seat for the long term. We'll see. As far as the swing goes... I ended up taking a Little Tikes swing that she uses at my parent's house two weeks ago. They didn't try it until today when I was there, and it worked out great. So hopefully they'll use that in the meantime (and not just when I am there!).

I bought Eden a new chair, called the Child-Rite, that is like a Bumbo but bigger. It's a little big for her, but she is going to get a lot of use out of it. The best part, and what makes it totally worth the money, is that she is able to get into and out of it by herself! We could use two more of them (one for school and one for upstairs) if they weren't so darn expensive.

Eden also got a new potty recently (this one was covered by insurance), and it is working out pretty well. We're still hit or miss with the potty training, but it's going...

We celebrated THREE! years of hearing for Eden on Halloween. She is doing so awesome that it's really unbelievable. Over the past 6 months we have seen her language skills grow in leaps and bounds. She asks and answers questions, tells us what she wants and needs, sings songs, tells stories, and remembers details from conversations that we had weeks ago. People still can't understand everything she says all the time, but it is definitely coming and the gap between her actual age and her hearing age is steadily closing. It is truly a beautiful thing and makes my heart burst with pride. The cochlear implant is amazing, and certainly one of the best things we have ever done for Eden. I cannot say enough positive things about it.

Holland had an appointment with the ophthalmologist a couple of weeks ago. The good news is that with her glasses on she is seeing equally out of both eyes. The bad news is that her prescription has gotten stronger again and we had to get new lenses. She is now at -3.5, +1.50, 100 in her right eye, and -8.75, +1.00, 055 in her left eye. That's pretty heavy duty. But, on the bright side, it can be corrected with glasses, she can see great up close, and we're back to patching just 2 hours a day (as opposed to SIX). Plus she's just so darn cute with her glasses on.

Both girls are doing great eating. They are telling us when they are hungry, eating a great variety of foods, and seem to actually like it. Our biggest problem with eating right now is that neither of them will really feed themselves, and we frequently end up hand feeding them like babies to get them to eat enough. Both are growing in length, but their weights have been at a stand-still since July when we dropped the bottles. Honestly, there is nothing more I can do than what I am doing now because I refuse to go backwards to consider bottles or feeding tubes at this point, so I just have to focus on the positive. They have recently been pretty healthy, have a ton of energy, bright eyes and happy smiles, and are developing a positive attitude toward food. We have made so much progress. What more can I ask for? They're just going to be small. Period. I have to preach it to myself all the time!

Halloween

I figured last Halloween would be the last time I got to choose the girls' Halloween costumes. Boy was I right!

Holland initially wanted to be Spiderman, so I bought the costume. The following week when we went to get Eden's pink fairy costume, Holland said, "I changed my mind" and wanted to be Tinkerbell. After buying the costumes Holland vacillated back and forth between Spiderman and Tink. She chose Spiderman for a pre-Halloween party at Ben and Kiera's house. I had no idea what she would decide in the end.

Eden was dead set from the beginning on being Echo Bubblebutton, the pink fairy that she created online. I was surprised when she chose to be Minnie for the pre-party. She never wavered from the fairy costume for the BIG day.

I admit that I talked up the fairy costumes the week before Halloween. I (not so) secretly really wanted them to both be fairies! As you can see, I got my way:)

We had a super, really fun weekend. Thursday after school I raked a big pile of leaves into our front yard and we had a blast playing in them for HOURS. On Friday we had my family (with all 10 kids) over for pizza and trick-or-treating. Holland and Eden were very interested in trick-or-treating this year, and we've been practicing at home for months! On Saturday the girls dressed up again, and we went to another Halloween/1st Birthday party. So, here's the shout out to Shiloh, Sadie, Cecelia, and Sasha! It was fun to see the big girls getting bigger, and to finally meet the babies:)

Family, Friends, and Fashion for a Cause

Hello family and friends!

I wanted to let you all know that the NICU family advisory board for St. Joe's (of which I am a member) is preparing for it's Fourth Annual Fashion Show and Silent Auction. Our family will be modeling in the show for the fourth time and would love to have you join us to show your support to the NICU that saved Holland and Eden's lives.

I know that you all know how important this cause is to me. The money raised at this event, in ticket sales and in the auction, is used to run several programs, including the annual Reunion for NICU families that I have organized for the past two years. We have also developed several other educational and supportive programs for NICU families, such as a monthly Educate and Create program, a monthly Pizza night, and the Parent to Parent program (which I am also part of), which provides current NICU parents with a mentor who is a former NICU parent. I cannot stress enough how wonderful the Family Advisory Board is, and how much they do for families in the NICU who have premature or sick babies.

This year's fashion show is on Thursday, November 13th at Washtenaw Community College in Ann Arbor. The Silent Auction and dinner begin at 5:30, and you don't want to miss it. There are many really cool items available to the highest bidder, including a bracelet that will be made by my wonderful mother-in-law, a seriously awesome quilt made by my lovely mother, a Choi Kwong Do package (thanks Nick!), and a quilt and/or basket donation from my friend Kathy. I am waiting to hear back on housecleaning and/or massage by Jackie. Please let me know asap if you think you will be able to get these donations to me by November 5th.

The fashion show portion of the event starts at 7pm. We are, of course, the stars of the show. Well, at least in our own minds, but we will be modeling and our family story will appear in the program. I am also in charge of set decoration, and am putting together the two slide presentations that will be shown during the show.

Tickets are $25 each, and are available from ME, as well as at the door. I have committed to selling 10 tickets, 6 of which are already sold to my parents, my mother and father-in-law, and Liz and Eric. Please let me know if you can come and I will be sure to have a ticket with your name on it:)

If you can't come, but would like to donate a ticket to someone who might want to attend but cannot afford the ticket price, please let me know. I know several people who would appreciate it very much.

I love you all, and hope to see you at the show!
Billie

And because no post is complete without a picture, check out the nieces and nephews on John's side of the family:

Connor, Justin, Eden, Holland, Briana, and Cody. We love you guys!

Wordless Wednesday

I need my hearing!

Eden has gotten really good lately about reaching up to put the magnet coil of her cochlear implant back on to fix her hearing. She also tells us now if/when it's not working by saying "it's not working," "I need new batteries," or "I can't hear." I love when she wakes up in the morning and I hear her over the monitor calling "Mommy! I need my hearing!"

The other day Eden was playing with a little baby doll who had on a headband. She loves to pretend that this doll is "baby Eden." As she was playing, the doll's headband fell off, and I overheard Eden say, "Waaaaa, waaaaa, I need my hearing!"

I love it!

Fall Fun