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.
Wednesday, March 7, 2012
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.
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.
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.
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.
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.
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.
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.
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