The other day both of my girls became suddenly sick. The Quail developed a fever of 103 and Zuzu’s ear suddenly started gushing forth goo. Both seemed to come on suddenly and out of nowhere. That morning we had been playing and planning our afternoon. The first post-nap cries told a rewrite in the script. It most likely was just a bad cold for both. But it struck me how differently the same apparent virus seemed to have settled in to both. The Quail woke up raspy. Which is her m.o. Zuzu with a goopy ear. Which is her m.o. Same virus- two different paths. Both required care- similar but different.
This is a well-worn path for both the girls and us grown-up caregivers. The first year of Zuzu’s life she was sick with ear infections from 7-13 months. They required fairly continuous medication, much missed school, many tears and even more sleepless nights. The first year of the Quail’s life the colds tended to head downwind. She didn’t require as many MD appointments and meds, but did land herself in the ER 3 separate times with two week long hospital stays. After she was released the second time a decision was made to keep her on maintenance breathing treatments throughout the rest of the RSV season. Since then the girls have been fairly healthy. But the season is back and I feel a little tick starting in me worried about how this season will go. The difference being we know better what to look for with both girls to treat them more thoroughly before either reaches the need for a hospitalization. Or so we hope and pray.
So when the cries started; the calls to the on-call MD started as well. The decision was to start Zuzu’s eardrops and assuming no fever or worsening she could wait to be seen on monday by her regular pediatrician. I went ahead and started the Quail’s breathing treatments as well. The other big difference with the girls- the Quail rebounds faster. When she woke up Sunday morning she was fever-free! Zuzu managed to remain in good spirits throughout the weekend. I think after the last year of dr visits for the Quail she was secretly thrilled to have the care and attention focused on her. She started listing off in addition to her impending ped appointment, the need to go to her real ear dr for the “tooth” in her ear and the need to see a dentist for the teeth she has never had come in. To be clear- it’s a tube in her ear but she repeatedly calls it a tooth. Talk about enthusiasm.
The other night while I was doing the Quail’s breathing treat (and yes- the reference to it like that has caused a series of requests from her stister for one of her own and the Quail’s giggling through it did little to convince Zuzu it wasn’t a treat in the true sense of the word), I found myself reflecting on how different the girls are in such quirky ways. In some ways they are so alike. Most people will remark what a mini-me Zuzu is- from the smile, to the eyes, to the continuous talking. Her dad get’s credit for the hair, but really- that’s mine too. I have a lock from my infant head to prove it. It’s easy to see the similarity between Zuzu and me. Just watch her pack her bag for the day, or cheer her sister on for her latest milestone, make a grocery list or turn on my Medela PISA when no one is looking.
But with the Quail- I’ve had to look harder. It’s taken till now when her little (and yet so very big) personality has had time to emerge in all it’s glory to see it. Yet in a lot of ways- it’s more basic. Zuzu actively tries to emulate me. The Quail innocently does.
Within minutes of her birth I asked the nurse who had taken her for apgars if she had Down syndrome. The nurse responded, “You know about that?” I knew it was a possibility. Early on I had been sent to the MFM/high-risk OB when Zuzu’s ultrasounds showed shortened femurs and hydronephrosis. I was monitored a couple of extra times but when she was born, no one questioned if her soft markers meant Down syndrome. Four months later she shocked us with a rather dramatic and sudden fever onset that turned out to be a UTI. Most likely a lingering effect of the hydronephrosis we had not seemed to need to remember.
Then along came the Quail. She had the same soft markers. At each visit the OB would suggest I go back for a more detailed ultrasound with the MFM OB. I asked what would happen after that and they said depending on what he found an amniocentesis would be recommended. I explained rather hormonally that with my previous history of miscarriage I had no intention of increasing those risks now. So we would go on with the exam and the next visit a similar conversation would ensue. Eventually the more brusk of the OBs said it was time to go get checked. So I went for the level 2 ultrasound at 37 weeks. Unfortunately by this time she was too big in-utero to be able to complete all of the measurements. And a bit obstinate in moving the way they would have liked to try to get a better view. The one addition at that ultrasound was an absent nasal bone. With that finding we read that only 1% of the population has it without also having Down syndrome. Still when the OB then met with me to discuss the findings I reminded him of Zuzu’s stats and that these weren’t even as severe as hers. He agreed and said he couldn’t make a conclusive statement about whether or not it was Down syndrome. The shortened femurs could just mean she was a genetic match for Zuzu. And maybe she just wouldn’t be overly tall. I had to laugh at that, Zuzu has never been called diminutive by anyone.
After birth the doctors asked if she looked like us or other family members. I don’t remember what I answered. I really couldn’t focus. Those first few weeks when I would scan the pictures for verification of a diagnosis or not I would tend to avoid the ones that looked like Ds. After her final diagnosis came 3 weeks postpartum by FISH Analysis, I wished I hadn’t spent those first few weeks wondering so much about all of it. Ironically the very day the pediatrician called with the news I had finally gotten to a place where I enjoyed not knowing. Not having a label to define what I saw.
I know some parents get to the point where they don’t see the Down syndrome anymore. I’m not there yet. I see it. I know so much about it and know there is still so much to learn. The difference now is it doesn’t matter so much. The Down syndrome doesn’t hurt her. She’s a well-loved little squirt if ever there was one. She has more people amazed by her then the average kid. She’s lucky.
And so am I. When I look at her face, I can’t always see myself in it right away. I still see those lovely blue almonds that sparkle and crinkle up at the ends. I know that it is that little extra 21 in her that causes it. But that little extra- it’s extra me, and Lovey and Zuzu and all of those family members that have come before her. I see the soft slope of her shoulders and belly and know that it’s that little extra 21 that is responsible for her little sack of sugar body that I love to cuddle. Some say it’s that little extra 21 that causes her love of cuddling. I don’t- that’s me. I get to take credit for that. They say that little extra 21 will mean she’ll have to work harder to achieve the same results as other kids her age. And I see it now, how much harder it is for her to learn to sit, to crawl, to eat, to talk. But it’s that little extra of each of us that drives her to keep at it with full-on enthusiasm. She may have to work harder. But the drive that eventually get’s her there- well that’s familial.
She doesn’t have to work harder though to show us what she loves. She is a bookworm through and through, like both of her parents. She loves music like her father. She loves food like her mother. That sweet strawberry lock of a quail’s bobbin- well it’s arguable which of us gets to take credit. She’s strong-willed like her sister. She’s full of wisdom, kindness and good humor. It just takes a person spending a few extra minutes with her to get to see it’s glory. Because right now, she doesn’t shout about it from the mountaintops. But someday she will, I don’t doubt someday.
Some days the labels put on this little girl, they filter out what people are able to see in her. When I look at her tiny face, I haven’t always seen myself so readily in it at first glance. But when I take the time and really soak her in- I see it. I see my heart, my history and my future grinning ear-to-ear back at me.