One update from me, Kathleen, – the backup Ikus arrived on Wednesday and we have slowly been given back all of our out-of-the-room privileges.
Below is an entry from my sister Therese, from her visit with us a week ago.
How do you tell people that your vacation at a hospital was an amazing adventure? It was more fun than my recent day trip to Disneyland! I had soooo much fun with Hana that most times I forgot that it was all consumed inside a hospital. Yes I was reminded that Hana has special needs requiring a watchful eye to make sure she does not sit down, kinking the berlin heart. But adults all over the world are watching children making sure the toddlers does not venture too close to stairs or pools of water. Of course there were times I seized Hana’s hand abruptly to prevent her from wandering more than six feet from the Ikus. But I have seen parents in public briskly grasp their child’s arm to prevent them from crossing a busy street or clutch them tightly into their arms to keep them safe. And of course most followers of this blog are aware that my last couple of hours in my visit were scary and full of panic when the Ikus stopped working. But have you seen the YouTube videos of parents who have witnessed their children in close call incidents? Just the other day a friend told a time her daughter was about to stick a finger into a socket. Hospital or not guardians of children are protecting and caring for their children. Plus Hana’s heart is sick, but her giggles and smiles could fool anyone into believing she was just another toddler learning the world around her.
Speaking of giggles…..My niece’s laughter stole my heart every time we played one of her favorite games. Hana would heave herself against a couch, race into my hugging arms, then repeat this with wild bouts of squealing. There really is nothing sweeter than embracing a little loved one! This was one of many things we did to amuse Hana while entertaining ourselves with her laughter. Do you know how amusing it is to run down a hallway wheeling a 200 lbs machine alongside your sister who is pushing her daughter on a tricycle? Then after one breathlessly lap we switched roles and did it again!?!? Us sisters were sweaty, tired, but most of all delighted that Hana enjoyed her cruise around the third floor passing by the onlookers puzzled to see such an event in a hospital! We had a playdate on the weekend with a four-year-old, two-year-old, and their mothers. Our guests hosted the first tea party for the three children. There was no tea, but some juice, mini muffins, and lots of clanking of the cups on the tiny pink saucers. The “playground” which was a slide my sister bought to amuse Hana in her room, was set up in a seating area. The four-year-old girl loved the slid, but would patiently share a turn with Hana. The shy little boy had fun being chased by his mother as the little girls rolled a ball to each other. It was so much fun Hana fell asleep almost instantly for her nap!
For Kathleen and Paul I know it is hard for them to live in a hospital and raise Hana in such an environment. But what I loved about this trip is the quality time with Hana. I did not have to exit the hospital into the real world full of errands or shopping. Instead I got to spend all of Hana’s waking moments getting to know her. I now have a better understanding why parents make such a big deal about their child’s first steps and words. I was lucky enough to witness my niece who was learning words in sign language. It truly is AMAZING to watch these little human beings think and grow! During my visit Hana started signing new words every day! Our excitement to watch her learn words was overshadowed by the pleasant thrilled look on her face that we understood her! If you didn’t pay close attention to her hands you would miss a new word she was learning! The moment literally happens in a blink of the eye! Just like children who do not articulate their words such as “Dada” for “Dad”, Hana’s sign language is not perfect enunciations of the words. Her sign for “water” is only her index finger to her chin rather than three fingers. However every time I drank my water from a bottle or the fountain she would make her sign for “water!” But she is so smart and learning so fast! She was even saying a few words and signing them too!
Speaking of…speaking and signing words, my favorite pastime with Hana involved some babbling, lots of signing, and a whole lot of smiling! On the third floor of Lucile Packard Children’s Hospital Stanford, Easter came early for the little supergirl in homemade kimono outfits. Instead of hunting for eggs Hana searched for colorful rainbows, fluttering butterflies, and twinkling stars! Isn’t that every little girl’s dream scavenger hunt?!?! Once, sometimes twice a day we would tape pictures to the walls so Hana could literally chase rainbows! She would walk down the hallway enthusiastically babblings and laughing. Hana would eagerly say and sign words for the treasured items she found. It was incredible to watch! Staff who know Hana were excited to see her doing things that were impossible a couple of months ago. Other patients and families observed in amusement as two to three grown adults chased a toddler, rolled the Ikus, and taped drawings to windows, furniture, anything within a toddler’s reach! But all spectators could not help but smile at the girl with the pigtails!
There are always moments of reality that remind me of Hana’s delicate heart. I know Hana lives in a hospital and it waiting for a heart transplant. However I cannot help but giggle like I was five again when I replay the videos of our adventures together. During my trip to California I found my inner child not at Disneyland but with my Hana. I find myself constantly looking at the pictures from my trip filling my head with happy thoughts that could make me fly like Peter Pan. This trip to the hospital was filled with love, laughter, and a little girl that has the magic to make any visit into an amazing vacation!
Love Aunt Therese
116 days in the hospital, 97 days post-Berlin Heart, 89 days on the transplant list.