The Sweetest Moment

I really wish I knew how to make a picture post on this site, because tonight, I got to witness one of the sweetest moments a mother could hope to see. And I caught it on camera, catching a moment that is worth far more than a thousand words to be remembered forever.

I caught Lily telling her big sister "I love you" in sign. While Lorelei signed it back. That moment, one that will remain imprinted in my heart through the eternities, captured to be shared by all who love them. The raw emotion of such a moment even being possible catches up to me every time I think of it. What sweeter moment could a mother hope to experience but to see her children expressing love for each other?

For a long time, we didn't know if Lily would be able to express anything. We hoped and prayed and stayed positive, but we did wonder if Lily would ever be able to sign. If she'd understand. If she'd physically be able to open her hands to sign. If she'd survive the incredible battles she's fought to get to her second birthday. Then at nine months old, Lily started signing "Mommy" after Lorelei took her hand and taught her how (that was another really cool moment). And then, just before her second Christmas, Lily's first at home, she picked up a second sign. And then, right after my father passed away, having never met Lily... Lily started signing family. (She signs half of the sign while one of us signs the other half. It seems to add something extra magical that way.) So Lily can, and chooses to, sign three magic signs.

And Mommy's heart says that if all Lily ever knows of life is love and family... what a joyous life she will have. And if she learns more, experiences more, and shares more... how great will that be for the world.

Something to Discover

This morning, I made phone call after phone call. Thirteen unique tasks, all accomplished, with several more for tomorrow morning and a few things forgotten. But out of the first half of the day, a single phrase sticks out more than anything.

"Mommy, Lily wants something to discover."

In a single sentence, Lorelei isolated the magic of my day... watching my daughters discover. And she was right. Lily, who was quite content to be getting ready for the day, lit up when her sister placed a small toy in her hand which Lily then started to explore.

She explored her blanket, her mirror, and her arm strength during tummy time. She explored a little handheld toy until she fell asleep. She explored her princess doll, her hands... and finally, a sucker. Lily explored a sucker willingly, which is a milestone bigger than a first step in this household. Oral aversion is a nasty battle, and Lily decided a sucker was a good first step tonight. I could squeal.

During each exploration, Lily discovered something important. So important that I don't even know how to define it. But to see her eyes glowing with life and her thoughts going a mile a minute, I can definitely tell that her sister knows her heart when Lorelei says Lily wants to discover something. Watching them together, I discover something too.

To the Best Big Sister Ever... Happy Birthday!

Today is Lorelei's birthday. She turned four at 1518 this afternoon. At the exact moment when she completed the last seconds of being three, we were taking family photos and in a whole family pose. She remembers that.

She remembers a lot of things, so much that it really makes a mama think. Lorelei is a sponge, just soaking up information and not even taking the time to ask permission because she craves learning so badly. And so we teach her.

Lorelei has more love to give than anyone I've ever met. And when she's tired enough to slow down, her whole 41.5" body just melts into my arms, cuddling in the perfect ways to see her for the sweet little girl that she is. She loves Hello Kitty and Rapunzel with her magic long hair. She believes in magic.

She believes in her sister. I can't remember the last time a day went by when Lorelei didn't tell Lily that she believes in her. Lorelei cuddles her sister, teaches Lily the value of sharing, and gives more kisses than anyone could count. And still, Lorelei has time to explore the world, asking enough questions to satisfy the curiosity of a brilliant little girl who has just turned four.

I love this little girl so dearly. Happy birthday, my beautiful Princess Pollywog. Thank you for four years of being your mother.

... And Beyond

We just finished out third of three days in the Disneyland and Disney California Adventure parks. Tonight, we also finish Lorelei's fourth year. When she wakes up in the morning, she will be a four year old little girl, the big sister of a miracle who is just as much a miracle herself.

This trip has been a dream. It's hard not to feel magic in every cell of your body when you spend several days in the happiest place on Earth. Lorelei has been so excited about everything. Hands down, her favorite rides were the rides Lily was also able to enjoy. Her favorite part of the whole trip was to go to lunch at Ariel's Grotto with her sister. (She still thinks it's amazing that her Nonni is friends with the princesses.) Even with the entire Magic Kingdom at her disposal, her favorite experiences were the things we all did together. That, and the tea cups. She really loved those tea cups.

The Castle in a Castle

Tonight, we are staying at the Castle Inn and Suites in Anaheim, right across the street from Disneyland. Lorelei still doesn't know what's happening tomorrow, but her sheer joy at staying in a castle is so sweet to me.

In our room, we've set up her castle tent. Our soon-to-be birthday princess is enjoying her castle in a castle experience. Mommy is enjoying her enjoyment and the special way that Lorelei is so eager to share each special detail with Lily.

If my daily life is my castle, these tender moments are my castle in a castle. And they are so incredibly worth the journey it takes to get them.

Sharing Rooms

When I was pregnant with Lily, Lorelei was really excited about sharing a room with the new baby. In fact, until we actually brought Lily home from the hospital, her crib was set up in Lorelei's room and we spoke with the proud big sister daily about her baby sleeping in that crib.

Lily has never spent the night in that room. Her central sleep apnea (CSA, a problem where her brain forgets that she needs to breathe) has always required her to be near us at nighttime. The crib sat vacant in the girls' room, being used only for naps. Until Lily went into the hospital in April of 2011 and came out in August with a trach and a vent and required nursing. One of the things that had to change... she needed her own room.

We're lucky in that the house we felt inspired to buy is actually a four bedroom house. One room is completely eaten by Mommy's crafting, but it wasn't difficult to find a room just for Lily. Lorelei, however was devastated. So fast forward seven months... and we don't have nursing. We're currently in negotiations with her medical team about the best situation for the nursing requirement... but even if we have nursing, odds are slim to none that it will be overnight nursing. If it is, Lorelei can spend her nights in our room. Meaning that...

The girls can share a room again! After asking Lorelei if she still wanted to share a room with her sister, and getting a resounding "YES!!!", we moved her in today. Lily will take her naps in their shared room. Lorelei's former room will become a play room, another thing she's pretty excited about. Tonight though... it was just enough to see her on cloud nine to get to go to bed in the room she shares with her sister.

The Importance of Play

Lily finally came home from the hospital on Sunday after a twelve day stay. A lot changed... her formula, her vent settings, the plan for nursing care. Overall, we're fairly happy with the results of our admission.

The single biggest memory I have is waking up and seeing Lily independently go to two handed play. I had hung a toy up for Lily using oxygen tubing hung from the IV poles at the edge of her crib. In the pediatric units, they have a child life specialist who tends to the developmental needs of the patients and their siblings. In PICU, our child life specialist is Althea. It was from her that I first got the idea to use oxygen tubing (usually a seven foot nasal cannula with the nasal prongs hidden) to give Lily access to toys that won't fall. It lets her play even if there isn't someone to play with her. Because of this trick, Lily makes milestones instead of becoming further delayed. And our developmental therapist at home, April, teaches Lily to use her hands, to use her interest in different textures... just so much. We love April for all that she does, and the milestones she helps Lily to reach.

Seeing her make those milestones makes her mama cry. I always knew play was important to a child, but never really fully understood it until I watched my sweet baby unable to really play. We've watched her fragile friends grow and do more and more of the things that other children their ages do... and leave Lily in the dust. It's Lily's love of life, her curiosity for anything she sees or touches, and her incredible love of time with her sister, that helps me to step back and see Lily for who she is. She is a miracle.

My miracle has been making leaps and bounds in self started play. She's doing great with playing with her sister. Lorelei loves seeing Lily's interest in new toys and is never shy about playing the gravity game and handing a toy back to Lily again and again.

My baby girl can play. And that is so important.

Pieces of the Miracle Puzzle

Yesterday was a great day. We had a great nurse, Mommy was able to help change the dressing on Lily's PICC (short for peripherally inserted central catheter, basically a big deal IV), and lots of hospital friends came by to comment on how well she is doing and how big she is getting. Two very nice ladies from the Redlands 5th Ward (the local congregation of our LDS church) brought me food. Carissa brought the most delicious tuna melt sandwich I've ever had and a great selection of fruits. Shirley, who just received the news that her daughter can in fact hear, brought some great snacks to keep the munchies at bay while I'm at bedside.

After rounds for me and work for her my friend Nora took me out to Olive Garden. It's our favorite place to get together when Lily is in the hospital. We have a great dinner and run into one of my favorite people from the hospital cafeteria. Then we go to Kohl's to look for some ICU friendly clothes. I was pleasantly surprised to find that they did have one display full of button up shirts for little girls. We picked up the biggest we could find. Then I saw it.

The absolute perfect Easter dress for Lily.

With a big sister style for Lorelei. Just perfect for our upcoming family pictures. I was wanting to do something focusing on tulips as a reference to the essay "Welcome to Holland" by Emily Perl Kingsley. The dresses have slightly blurred tulips of the widely opening variety, with lots of dark green, orange, and purple... all the favorite colors in our family. And it even has yellow and white, which Lorelei will love because those are Nonni's favorite colors.

By this time, I'm beyond thrilled. I'm so excited in fact that I'm telling my cashier about Lily and her story, being in PICU, and the dresses. She feels so moved to help that she takes coupons that other shoppers have given up without using and gives me both $10 and 30% off. The total discount is so much that if I were to compare it to the price of the dresses at their sale value, I end up paying $1.39 for two gorgeous Easter dresses. They retail at nearly $100, and because of the love and inspiration of other people making sales at the right time and returning unused coupons... these gorgeous Easter dresses that mean so much to my family were basically free.

I cried. I'm even crying writing this. It is this type of goodness in the world, bringing meals to the mother of a hospitalized child, opening a home to allow someone access to showerandlaundry, passing along coupons at just the right time... that makes special needs parenting so much easier to bear, each a piece of the puzzle that together makes a miracle.

Fun in the PICU

This has been a very interesting week for Lily. She was admitted to the pediatric intensive care unit (PICU) last Wednesday with pneumonia. Not uncommon for a fragile little girl. Tests were done to verify that her brain shunt is working (it is), that her heart is functioning well (it is), and to see what infections she has. All the while, she's hanging out as the healthiest kid in the PICU, getting bounced room to room and nurse to nurse to meet the needs of the unit. They have some really, really sick kids right now, more so than normal. Lily, however, is being adored by the nurses and doctors with choruses of "She's so big!" and "Six months? You guys are doing great!"

The princess decided to pull a double all-nighter a few days ago, and has been sleeping it off for the last two days. During day one of the sleep fest, Lorelei and Daddy came to visit. We were able to let Lorelei cuddle Lily in the bed while Lily was awake. Lorelei was especially enthusiastic about that since it's one of her favorite things to do at home. Lorelei also left some beautiful artwork on the dry erase board in Lily's room. Her talents as an artist are definitely making themselves known and she is so proud of her work and what it means for Lily. Lorelei was also able to color the pillowcases for Lily's super soft positioning aids. These are called Z-Flo and they are amazing. After coloring with permanent marker and machine washing in hot water, they are pretty cute covers.

Mommy did leave quite a bit on Monday for time with Lorelei. For Mommy-Daughter Monday, we went to a place called Yogurtlicious that is very much like Yogurtland (where we went in Las Vegas). A nice little self-serve frozen yogurt shop. Lorelei really enjoyed choosing her own toppings, especially the edible water beads (aka strawberry boba) and the purple and blue gummy bears. We also took a few other outings in between waiting for the doctors to round.

Lily has been sleeping most of the time since Daddy and Lorelei's visit. Mommy hasn't had too much time to be lonely though. Between medical mama friends and new friends from the local LDS churches, I've been kept in good food with good access to laundry and showers. It also gives me that chance to get out of the hospital and take care of myself. Much needed at that.