Today is "National Sibling Day", which is likely a made up holiday. But all the cute facebook posts had me thinking about my girls. I looked at pictures of seemingly carefree toddlers and kids and thought "wow". Ava has had a lot of life experience. We often joke about her feisty personality, desire for independence, and proclivity for mischief.
But, Ava is also a two-and-a-half year old little girl with a lot of weight on her tiny shoulders. She is a fierce protector of her sister. "What are you doing to her?" is frequently said to our home care nurses and hospital staff. "She doesn't like that" is another. Ava rubs Maddie's hand and says "it's ok sissy" when getting a procedure.
Another thing she says is "let's see if she'll eat this bagel." So yes, Ava still is a toddler :)
Ava knows A LOT about medical things. When Maddie coughs, she says "good job Sissy, keep coughing". Without asking, she knows to grab the suction machine. Ava knows that the oximeter sticker goes on Maddie's big toe, and knows how to turn it on. Ava can partly assemble "the vest" airway clearance system. Ava knows where sissy's food and water goes, and how to put the tube on. Ava knows that the cough assist is used after the nebulizer treatment. She knows what supplies you need to give an enema and what equipment you use to do a bath.
Ava has had to adapt to a life that's hard for most adults to grasp. At any moment, we may scoop up our things, put on our shoes, and head out the door to the clinic or ER. She may get dropped off at daycare by Mom on a typical morning, but then unexpectedly be picked up by Grandma because Mom and Dad are in the hospital with Sissy. She adapts. She adapts to spending the day with friends and family who don't do things the exact way Mom does. She adapts to spending every evening in the hospital room and eating dinner in a cafeteria, so that we can have some family time. But Ava isn't a baby anymore. She understands what's happening and she gets scared. At bedtime she tearfully asks where Maddie is and describes how she wants her family to be home.
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| Bedtime story in the hospital |
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| FaceTime in the morning |
As parents, we often wonder how our choices and behavior will affect our children. Is it the right thing to bring Ava to the hospital every night, or should we stick to her home routine? Should we expose her to all the medical equipment and cares, or keep those things for Maddie in a separate, off-limits room? Will having to take a backseat to her sister's needs have long-term consequences for Ava? We don't have the answers. We have a toddler who tantrums when leaving the hospital, but lights up when she is reassured with her own two eyes that Maddie is ok in that hospital bed. We have a toddler who is constantly getting into medical supplies faster than I can get them put away. But, perhaps, she'll become a nurse or doctor with firsthand compassion. We have a child who is go, go, go, look, look, look all of the time. But, she's also the first to notice someone in a wheelchair, point out what color it is, and go up to say hi.
Growing up as Maddie's sister is hard, but knowing her sister is important. And hopefully she's learning some life lessons along the way.
XOXO to all those who support Ava on this journey.
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| Celebrating Maddie's 5th Birthday |
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| Christmas 2018 |
