Sunday, March 18, 2012

At the End of the Rainbow

All of the festivities from St. Patrick's Day are calming down, but talk of the feisty leprechauns and their gold has left me a little pensive lately. Because of the gift our leprechauns gave us, rain, we had rainbows in Ridgecrest yesterday. They are a very rare treat because it only rains here a few times a year. Lore would say that at the end of a rainbow is where you'll find a leprechaun's gold.

I wonder sometimes, just what IS at the end of our rainbow with Lily. We wonder what her future will hold, wonder what amazing things she'll show us. We wonder what Lorelei will become, if they'll stay close... so many things. What I do know is this. We are living in the rainbow, and if that isn't heaven, I don't know what is.

Saturday, March 17, 2012

A Day Of Green

St. Partick's Day has always been fun for our family. Every year since we were married, Joey and I "enjoy" some traditionally Irish food. I say "enjoy" because while it's fun, I actually hate the traditional corned beef and the traditional cabbage. Joey isn't too keen on the cabbage either. We also have red potatoes and this year, after the kind young lady at Costco told us it was originated in Ireland, a very nice Red Velvet Cake. Please don't tell me if you know that isn't Irish because it was really good and we'll be calling it Irish next year. And some Irish cheese, which was especially delicious with the potatoes. Lorelei enjoyed all of it with some careful advertising.

We also had a visit from the leprechauns this morning. They turned our milk green and somehow got into Lily's formula cans and made that green too. They then played a really mean trick. We looked outside as we were about to get into the car for Lorelei's birthday play date....and it was sunny. Gorgeous. And raining. In Ridgecrest where it never rains.

I'm sure those leprechauns got quite the kick out of our scrambling around to decide if we could still have a park play date, or should we move it and where. We decided to start with the park since we didn't have everyone's phone number, and moved to McDonald's when the weather was colder than Lorelei could bear. Our many thanks to all our friends crazy enough to come enjoy a rare Ridgecrest treat and to the friends who joined the party after moving indoors.

Friday, March 16, 2012

Sparkle and Smiles

Lily had physical and occupational therapy in Loma Linda today, after which we went to Costco to pick up a few things. She wore her Disneyland sunglasses, with all their beautiful orange sparkles, and got a million smiles. Everyone who sees her tells us how cute she is. People can't help but to smile.

This reaction, these smiles... are the reason why we keep Lily surrounded by the cute things of a little girl's childhood. Because we love the smiles, the love for Lily... and the sparkle that keeps that little joy in her life.

Thursday, March 15, 2012


Lily has been having a reaction to her Synagis vaccine. In my mind, it's still worth giving it, but we've definitely been letting her have an easy day since she hit 102.7 last night. The good news is that the fever didn't last through the first dose of Motrin and she's been stable all day. That... and Mommy got to spend a lot more time with Lorelei today. A very pleasant surprise indeed.

Around 10:30 this morning, our M tank, a very large oxygen container, starts suddenly spewing oxygen out like there is no tomorrow. We tightened the tank closed and ordered a refill. A very interesting surprise.

Lorelei has so much personality. Lately, she really enjoys the way I pick her up and set her on my shoulders before flipping her off for a (very controlled) "dis-a-mount". It's the moments like that that have life worth living. Each of them is its own surprise, it's own joy... and I am so glad to have them.

I also just joined the local gym... so here's hoping that we have some surprises in that arena too.

Wednesday, March 14, 2012

With Friends Like These...

When I arrived at my favorite restaurant, a nice little family owned Vietnamese place where I haven't been in at least three months, the hostess Amy recognized me on sight. Before she could even tell me that they were out of my favorite order, she was asking about Lily and Lorelei. Amy is one of many people in my life who has fallen hopelessly in love with my daughters on our journey. She's never met Lily and I really hope that one day, she will have that opportunity.

We have many people in our lives who feel this way about our girls. It makes so much difference to our situation, coping with something so much bigger than ourselves. Our successes are shared among hundreds, and the sorrows we shared are felt in many hearts. While we may feel alone in the sense that Lily is unique, there are more people than I can keep track of who love Lily, pray for her, do good in her name... They follow her story. They learn new things, see life in a different way. Take the joy from each miracle and let it multiply. We might feel alone, but we aren't.

With friends like these, we never will be.

Tuesday, March 13, 2012

"Mommy, I Don't Want To."

Having recently reached the four year milestone of motherhood, I've heard this phrase, "Mommy, I don't want to..." more times than I could even begin to count. But I've never heard Lily say it. She doesn't sign it. So how does she communicate her lack of interest?

It doesn't happen much. Lily is pretty content to go with the flow of things. If she does have some objection, usually she shows it by not cooperating with an activity. Or by detaching her various trach attachments (a fairly big no-no in our home, go figure). But not last night. Last night was different. Last night was special. Last night was monumental.

Lily decided to show she didn't want to do tummy time on Mommy's chest by... slowly pushing herself into a supported sitting position for the first time ever.

There are no words for how good this feels.

Monday, March 12, 2012

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.

Sunday, March 11, 2012

Studying, Studying

After being thrown off by Daylight Savings Time, Lorelei, Joey and I recovered the day by doing a massive cleaning of two rooms. We've been thinking of having a yard sale for awhile to help streamline the things we're addicted to having around before our eventual move. Today we dealt with the front room and the playroom, the two rooms that most intensely deal with toys. We've been letting Lorelei choose which of her things she keeps or sells, and being that I don't think I've ever let any of her toys leave the house from babyhood, she has a fair few toys that are no longer needed here. Since they are her toys, we're letting her keep the profit from selling them. She's pretty excited about that.

While we did this massive cleaning, Lily hung out with the family in her wheelchair. I love this chair for her because she gets the side support that she really needs. She's doing more consistently grabbing and reaching for her toys when they stay within her reach. It's been really nice to see Lily studying things as though she's trying to answer the deepest questions of the universe... via a doll with a shiny skirt or a little animal from a nativity set. She gets this look in her eye that makes me remember what life is all about... love. Love of learning, love of others... just love. Sigh. I really do learn so much being her mother.

Saturday, March 10, 2012


The mail is an interesting thing, especially in this day of digital communication. Just this week, the mail brought Lorelei eleven little birthday cards in eleven envelopes. It brought bills, notices for people who no longer live at the address where we have resided for nearly four years... and it brought information for Lily's care. All in envelopes, most of them white. Sometimes, the envelopes are bills that have been paid correctly by the insurance; other times there are errors. Some times they are doctors' reports on Lily, with good news, bad news, no news... but every time I open an envelope now, there is a moment of holding my breath to see what has arrived.

Today, it was a quarterly report from Lily's developmental therapist who, sadly, has just recently taken another job. The report is overwhelmingly good, telling me that the advances I've noticed in Lily are not just the over-zealous joy of a mother wishing for the day when her child can do things. Lily has really been progressing. She's made progress in every area listed on this report. In fact, if we adjust for all the time she's been sick (nearly a year if you count out of the hospital too), she's nearly on track for everything except expressive language. For a deaf child who is physically unable to speak because of her trach, this is expected... so the envelope brings great news. So today, we celebrate... and try not to think at all about what the next envelope will bring.

Friday, March 9, 2012

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.

Thursday, March 8, 2012

... 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.

Wednesday, March 7, 2012

Friends in Faraway Places

Not surprisingly, when Lily is out in public, she attracts a lot of attention. Most people just look, and most of those with smiles, but every now and again, someone stops long enough to ask. Almost always, we end up with another friend.

This happened a lot today. We ran into the pastor friend of one of our heart transplant friends (Frank), someone we've never met before. We made a new friend from Utah (Michelle), and a new Disney employee friend (Alyson). All of these people instantly fell in love with Lily and her story. It's hard not to. It's hard not to fall in love with a little girl who loves life so much that she'd fight so hard for it.

It also adds a lot to our experience to make these friends, to permanently add to our lives through these shared wonderful experiences. So Frank, Michelle and your two lovely sons, and Alyson, thank you for sharing in our day. It means so much to us.

Tuesday, March 6, 2012

Magic Moments

There are moments in life so amazing that just the thought that another magic moment exists is enough to carry you through the deepest trials. we've had some of these as we've gone along on Lily's crazy journey. The kindness of strangers, the loving curiosity of children... Just one more little magic moment.

No amount of these moments could have prepared me for seeing Lily's face on It's a Small World. She lit up like a little girl on Christmas morning. You could feel the joy in her eyes, it was so strong.

Today, this experience, was one of those magic moments that kept me going through her worst of times. And it just feels so full of wonder.

Monday, March 5, 2012

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.

Sunday, March 4, 2012

An Open Letter to the Mothers of Curious Children

Yesterday was Joey's birthday. Lorelei and Lily celebrated by taking Daddy to Home Depot and making some little heart baskets (and yes, Lily made hers, even though it took help and a fair bit of time). Afterward, Lorelei and Lily went to the library with Grandma and Mommy. Then off to lunch with everyone including both of Joey's parents and his brother.

While we were out, we encountered two very curious little girls and two very different parental responses. We get a variety of responses to Lily's condition and they intrigue me.

At the library, a little girl about four years old walked around Lily's wheelchair, sat down next to her at a table to play with the toy sitting on the table. Her mother needed to leave and called her back. The little girl bounced up with a smile on her face and joined her mother. My assumption is that it was just time to leave, but I wish they'd had time in their day for the little girl to explore her curiosity a little bit more. Especially because she didn't even try to touch Lily or her equipment. She was just a happy little girl who saw another little girl for being another little girl. Her response means the world to me.

At lunch, a little girl named Lilly who just turned four was so curious that her mother brought her up to say hello to our Lily. The mother cautioned her not to touch or get to close while holding her daughter's hand. She allowed Lilly to ask her questions and hear our miracle story and the relationship of these two sisters. Lilly learned a few signs and had a lot of questions answered. Again, this experience means the world to me.

I am a better person for meeting these girls. My daughters are better people for meeting these girls. And I'd like to speculate that just a little bit, a very tiny bit, they might be better for meeting Lily.

We don't mind answering tactful questions about Lily's condition. We like to share our journey. We enjoy sharing our miracles. And curious children bring joy to our battles. So, mothers of curious children, if we chance to meet, feel free to share in our joy. We welcome you to the journey.

Saturday, March 3, 2012

The Blessing of Birthdays

Having Lily in our lives has taught our family that each milestone, each new talent, and any special occasion is something to be embraced, celebrated. Today was Daddy's birthday. The second year in a row that Lily has spent it out of the hospital. After having her first Christmas, first Aster, and first birthday in the hospital, anything we can celebrate at home as a family is a big deal.

Last year, we stood by as a dear friend received her heart transplant. A second chance at life, a million moments with family... And a very special birthday to me.

Friday, March 2, 2012

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.

Thursday, March 1, 2012

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.