corner view: pondering

This week’s Corner View subject was what are we thinking about these days. Those who follow our little story along would probably say I could have just left off with the photo above. What’s in my head is fairly self-evident when you look down to the two little starfish shaped hands I’m typically found holding.

It’s funny to think that a few years ago they were barely on my mind. I was more interested in- well, myself. Also food, gardening, travel, TV and books, music and live shows, the world, my family and friends that already existed in front of me. I’m sure to those without children my incessant and seemingly redundant stories must get to be a bore. I get that. It’s shocking how consumed you become with your own children and their world once they exist. And sadly it’s hard to explain how small your world shrinks and yet simultaneously, how full it becomes. 

I remember being so surprised in the year after Zuzu was born that I had no interest in planting a summer garden. That was one of those coupley things that Lovey and I did. Not well mind you, but we did it and we enjoyed the time together. When that first year came to a close and indeed I had not gotten back into my BC (before children) routine even a little; I was disappointed in myself. It wasn’t like I wanted some rock-n-roll, of-the-moment lifestyle. But I found I had little energy or focus for all the domestic bliss-filled activities that had filled our hearts and days BC and had led me to think we’d make great parents. I was lucky to get fish-sticks cooked and the fruit cup drained let alone go fishing or grow a small fruit tree. I think it was even during this timeframe that a number of our precious plants that had traveled with us from the early 90’s gave up the ghost.

There was some talk of postpartum depression and anxiety and just plain ol’ exhaustion. I cut a lot of regular activities out of my routine and pared it back to basics. I needed to nurse the baby, pump milk, go to work, clean and feed the baby, take a few photos of her and sleep. I felt really fancy when at the end of a week I had managed a daily shower.

And then Zuzu started nearing age 2 and Lovey and I started estimating the life of our reproductive years and considering the difficulty we had getting Zuzu here, we figured we best start again now. Tired or not. The Quail managed to become more than a twinkle in our eyes right off. I hadn’t even managed to wean Zuzu or move her out of the family bed before I could feel the tiny kicks from inside. So out she came with all her mysteries and hidden secrets and off we went on a new research tangent trying to understand how best to nurture her and her stister. Our world became more full and yet even smaller and focused.

We worry that there isn’t enough “us time”. We heed the warning from everyone around us. To me this time with small children is intense and presses us forward so rapidly (at least in hind-site). But it’s just that- a moment in time. Moments that I already find myself sporadically wishing I could have back with each growing sigh of relief as a worry passes and we survive another day. But there are no do-overs with our blessing of new knowledge gained from our days We can only move forward with time. Now and hopefully forever more though, the definition of us- well it isn’t just 2. It’s all of us. How to find peace in daily ordinariness is what I ponder most resolutely now. How to continue to want what I have already rather than wonder what could have been, should have been, could still be.

Those other trains of thought and activity, they’ll find their way back into our lives eventually. The fish sticks will eventually morph back into some version of a parchment wrapped filet and the fruit cups will become more exotic, if not home-grown. Maybe our end results will be more basic but we can hope they will still hold some blessing ala Alice.

Perhaps the real difference in what I pondered a few years ago and now isn’t so vast. A few years ago I had the luxury of wearing my heart properly tucked inside my chest. Now, I am blessed with the luxury of it beating outside of me and all the beauty, worry and vulnerability that comes with that small luxury and privilege.

See what everyone else in the world has on their minds of late:

jane ianbonniejoycekimkaytrinschritvafrancescastate of bliss cabrizetteisabellejaniskarijgylisecateotlidortebsophiemcgillicuttysunnymamadaanibbpienduzzkelleynninjasammitheresacherry bjulietteshokoofehcolegrey lemonlucylainelynnskywritingannadoritconnyl´atelierkamanaanne marierosamaríavictoriatikjewitjuniperannabelandreavaleriemerel soissesmlle paradiscacahuetewander chowbarbaraemilytallynadinematildadon flowtopssusannataniadanaingridmaryhinke

Zuzuday: Anything you can do…I can do better….

I can do anything better than you! Unfortunately the spotlight that the girls are vying for is the medical one. As I mentioned yesterday, the girls both got sick a couple of weekends ago rather suddenly. Generally speaking; October through April, we have to RSVP maybe to most of our invitations.

The end result of that Saturday afternoon of fevers and goop was the start of regular maintenance breathing treatments for the Quail and an ear surgery for Zuzu. Her ENT had said last spring that if her tube in her right ear didn’t come out on its own by fall we would need to schedule surgery to remove it. Well that bloody goop that came gushing was actually the result of the tube being in her ear too long. She got a routine infection, as she’s prone to, but this time the goop pressed the remaining tube up against her eardrum. Generally it’s never a happy feeling when your MD looks at his intended and says, some version of, “Oh, that’s not good.” No, indeed. It’s not. So she was given oral and eardrop antibiotics and the removal surgery was scheduled.

Do you take your 4-year-old to the doctor? If so, then you won’t be surprised by this little tale. When the kind MD started describing the procedure to remove her tube (or tooth* as she insists he said); Zuzu interrupted him with the following:

Zuzu: “Momma, is he a real doctor?”

Me: “Yes, Zuzu, he’s a real doctor. Go on Dr. B.”

Zuzu: “Momma, how do you know he’s a real doctor?”

Dr. B: “Well I didn’t pick up my license at the Holiday Inn Express!”

Me: “That’s enough Zuzu, quiet please. Go on Dr. B”

Zuzu: “Ewwwwwww….. Momma, he prescribed poop! That’s a butt word! We don’t say butt words!”

Me: “No he didn’t prescribe poop Zuzu, please be quiet. Go on Dr. B”

Zuzu: “Yes he did! It says poop right here! We don’t say poop!”

And on it went until Dr. B finally left and said that the nice nurse would come finish up with us.

So tomorrow we’ll head over to the hospital for what should be a fairly short and routine procedure. The doctor said she’s welcome to show up in her jammies and with a lovey. I’m thinking I might follow suit.

*Oh and that little “misunderstanding” of tube vs. tooth. Well the conspiracist in me is fairly certain she understood what he said but is opting for pushing the tooth version. Just the other night as she was going to bed she explained to me that she has to go have her “tooth” removed this week and that she’s going to put it under her pillow and then the Tooth Fairy is going to come and leave her a surprise! She explained it so earnestly that I didn’t have the heart to explain that the Tube Fairy isn’t so widely believed in these days.

Mommaday: reflections

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.

Gratitude Journal: 21 things we love about the Quail

My Cherubim Putti

So last year in the lovely month of October I posted 21 things I love about the Quail. I’ve thought about starting from scratch with an entirely new list but decided to go back to last years and update it to see what’s changed!

1. that bobbin of hair at the top of her head Her strawberry blond locks have caught up in length to that sweet bobbin. I expect by this time next year she’ll have had a day playing beauty shop. But for now her version of Kate Gosselin’s do will have to do.

2. the way her eyes crinkle up when she grins ear to ear Now there is audio that goes along with the grin- I love her little heh-heh-heh. And I love how it matches and twines in with her sister’s giggles.

3. the way her eyes stay trained to Lovey waiting for him to notice her. She’s still a big fan of Lovey, but these days Dora gives him a run for his money. And as much as she craves his attention. She also craves a speedy get-a-way in the middle of diaper and outfit changes.

4. the way she gets our attention by saying, “Uh!” when she has waited far too long. It’s more of a pterodactyl impression these days.

5. the way she grabs our face with two hands and pulls it to her to taste our noses. Awwwww, that makes me sad, the face grabbing is no more. Now she dives in for an open-mouthed, full-on, wet, gloopy kiss. Those are the good ones. When she burrows in to a limb beware though, those little teeth are sharp and prone to clamping on. 

6. the way we leave her in one spot, go to get something, come back 30 seconds later and she is somewhere else. Now she follows you. Unless you are with her, then she scurries away with whatever she can grab on the quick to claim as her own with it tucked into her little arm crease and a giggle and grin as she leaves you in the dust.

7. the way she nuzzles her bunny lovey to her face. She still nuzzles her warm fuzzy friends and blankets. She also feeds, hugs and coos to her baby dolls.

8. the way her eyes light up when you bring out the cereal bowl. Again with the pteradactyl impression here. Patience may be a virtue, it ain’t hers. She does continue to love food though. Her first real table food (read: not baby puree) was curried potato salad. She is more than willing to try almost anything you give her….except water and broccoli. She will attempt to rip her own tongue out of her mouth to get the broccoli back out when she realizes she has been duped. And I can’t blame her with the water- if you had Thick-it added to your water you’d be grossed out too. It’s also not lost on me the irony that the kid who will eat everything won’t eat broccoli, but her sister- who will hardly eat anything not already designated personally into her toddler 4 food group pyramid scheme of cheese food, nugget, sugar or whole-milk yogurt loves her little trees “all day” as she so sweetly puts it.

9. the way her eyes stay trained to yours when you look at her. Both in her glee to see you and in her measured estimation of your level of anger. If she thinks she’s in trouble she locks eyes waiting to hear the reprimand. And before you feel too sorry for this little rascal, I can assure you the reprimands are few and far between for her. She’s clear on the no-nos which at this stage include no biting and no full-on clean swipes of your dinner from your tray to the floor.

10. the way she lets you know by screaming when she’s had enough “affection” from her big sister. Um, no change here.

11. the way she nuzzles into your neck when you hold her up on your shoulder. Now she lays her little head down on your shoulder and offers up a little pat on your back.

12. the way she lifts her legs when you pull out a diaper to change her. Now she says diaper and all done when you are finished.

13. the way she laughs (heh-heh-heh) when you press your face into her belly and give her a raspberry. The big change is you don’t have to physically touch her to elicit a giggle anymore. A sound, a look, a joke, your laughter any silly attention from Zuzu and she’s cracking up!

14. the way she lifts her little arms up overhead when she wants you to pick her up. That was really the first sign. The most frequent these days are drink, up, book and please. I’m fairly certain those cover her world at present.

15. the way she concentrates so fully on the television when Baby Einstein comes on. She likes some Baby Einstein- mostly the Baby Wordsworth, some Signing Times and any Dora. Otherwise she’s a book girl these days. The TV can be on and she’ll crawl across the room to pull  a pile of books down from any shelf, chair, bench,  or coffee table in eyesight. You may think you only want to read Blankie a couple of times but this girl would prefer you keep up the recitation.

16. the way you can feel her heart beat as you kiss the soft fontenalle on her head. Still open and still sweet. The more mobile she gets though the more anxious I am to have that close!

17. the sweet baby, milky, yeasty way she smells. Um, the poopy, curdled milk, dirt from the playground smell is a little less appealing. But you know- when it’s your kid it’s still all good.

18. the way she splish-splashes in the tubby. Hmmmm….not so cute now that it goes everywhere and the usual activity involves repeatedly throwing wet toys out of the tubby. I’m proud of her skill and persistance but still….

19. the way she hollars a reminder to come get her if everyone has congegrated in a room that she isn’t in. Unless she’s over tired or over hungry she’ll come find you.

20. the community that she has brought us along into with her. We are so blessed to be a part of this “family”.

21. her, just her. I heart her.

Quailday: The Toddler Diaries

 

As I mentioned last week one of my biggest smiles of the day comes every afternoon when I get a tiny peek into the Quail’s day. For posterity’s sake, I’m going to start keeping a collection of her days as told to me by the Quail’s beloved Miss Mattie, Miss Jodie, Miss Ashleigh and all our other favorite teachers. I hope it makes everyone who loves her smile as wide as it makes me! The picture shown here is the Quail with her EI, Jodie working on some squishy skills.

From September school days:

9/7/10: “She was so great today!  She came out on the playground with everyone and was so preoccupied with playing that she didn’t care if I was there or not at all.  Once we came inside, she just played on the green carpet with everyone and was crawling around and babbling with everybody.  She was much less shy today than last week.  After that, it was time for their snack and it was about time for her milk so I sat her down in a toddler seat at the table and she drank milk and thickener out of her cup with everyone.  After milk, they were getting food-food and I wasn’t sure what she eating now.  Ms. Patti said she usually gets baby food at around 12 so Miss Ashleigh went to grab her a couple saltine crackers so she could eat with the big kids.  While she was gone a couple kids at her table got their food.  She was getting impatient and stood straight up out of her chair.  I don’t think she even realized she was standing.  She was up without any help for a good 20 seconds and then put her hands down on the table for support, but stayed up for a couple minutes while Miss Ashleigh got her crackers.  She also signed “eat” and “please” to get them.  I’m not sure that she even really needs me with her anymore, she’s getting much more confident and comfortable with it. ”  

After requesting further clarification on the standing since it was the first time noted by anyone:

“She lowered her feet down and just stood right up.  The back of her legs were up against the chair, but other than that she was standing on her own until she put her hands down on the table.  I didn’t even know she could do that.  I’ve seen her try to pull herself up from sitting on the ground, but never lower herself down from something. ”

And then the next week:

9/15/10: “She is so motivated to stand!  When I first got there, I was going to bring her right over to the toddler room.  Instead she grabbed onto my fingers and (legs tucked to the side) stood right up with me pulling a bit.  Unfortunately, she lost her grip on my fingers and fell backwards.  She was a little annoyed with me for that, but quickly forgot about it.  Next, she crawled over to the red toy bucket and tried to pull herself up to stand (again with her legs perfectly placed).  Even though she never quite got it, she kept trying.  After about five tries I helped boost her up and she picked the baby toy out of the bucket and gave it hugs and kisses.  Then I got her shoes out to go outside with the toddlers and I said, “Quail, Can I see your foot so I can put your shoe on?”  and she lifted her foot hi in the air for me.  We went next door and spent about 5 minutes outside and then about another 15 in the toddler room.  She played with block with them and I tried to work on some two-step commands with her “Quail, put the block down.  Quail, stack the block.”  She was pretty distracted though.  She also said “baby” in reaction to another toddler playing with a baby doll next to her.  She did pretty good in there, but still looks over for support when she gets overwhelmed.  Then, we cam back to Ms.Patti’s room.  I tried to work on her wheelbarrow excersize, but she wasn’t feeling it today.  We did some crawling over my leg instead.”

And then a few days later:

9/20/10: “She pulled herself up to standing without any help today! When I first got there, she crawled over to me to say hi, then she crawled over to the red toy bucket and just pulled herself up like she’s done it 100 times.  She tried again a minute later and didn’t quite get it, but she was close.  Then we went out to the playground with the toddlers and she went on the swings and down the slide (with a little help) and got to say hi to Zuzu on the other side of the fence. We spent about 20 minutes outside with them and then came back to Ms. Patti’s room.  I had her sit up on the block and we read a book twice.  She signed “book” when I asked her to say book.  Then I worked on having her reach for puzzle pieces and tried to get her to put them in the puzzle.  She was more interested in hitting them together though.  I also tried to work on two-step commands with the cups.  “Put the cup down. Stack the cup” She stacked one cup on top of another once, but wouldn’t put the first block down when asked.  Then, I had her sitting up on the big ball and moved her from side to side and front to back.  She did really well with this and didn’t need that much support from me.  Next, I had her crawl over my leg for puffs.  She did this about 5 times and signed “please” for puffs.  Then, I tried the wheelbarrow with her with help from Ms. Patti distracting her with puffs.  She stayed up for about 15 seconds 3 times.

Mommaday: Buddy Walk

Buddy Walk snuck up on this year and we were happy to be able to go at the last minute after being fairly certain we weren’t going to be able to attend either of our local ones. Fortunately our Family Connections friend Kim, who also happened to be the top fundraiser this year was extremely persistent and convinced us to sneak it into our schedule. She even managed to get the Quail on the T-shirt as a participant as well. Here are a few shots from the beautiful day. It makes my heart swell to see all of the folks gather and celebrate. I still am a bit intimidated by the event though and haven’t managed to organize the Quail’s own team yet. I’m not quite so sure what makes me feel shy about asking people to join us. When I see everyone else’s entourage I inevitably wish I had been braver. One of these years. In the meantime…

Gratitude Journal: Gratitude for services

Not so very long ago, it was much harder to raise your child that has special needs in your home. I’m thankful every day that our little family was created in the here and now. Here are just a few of the things we are thankful for.

1. Early Intervention

2. Our pediatrician

3. Our pediatric cardiologist

4. Our pediatric surgeon

5. Our Children’s Hospital

6. Our children’s hospital that will do the Quail’s OHS if it ends up being needed

7. Our OT and PT

8. Our feeding specialist

9. Our geneticist

10. Our Down syndrome Family Alliance

11. Our Family Connection

12. Our preschool

13. Our speech therapist

14. The Babycenter Down syndrome boards

15. Downsed International

16. Advocates like Dave Hingsberger that make me think

17. Friends like Pudge & Zippy that tickle our funny bones

18. Places like The Waisman Center that educated me and do so much to further our understanding of disability

18. Friends like Down syndrome New Mama  & Einstein Syndrome who help us get to know each other and understand our little ones.

19. Photographers like ConnyBethany that help make it even easier to see the beauty in what for some is difficult.

20. Publications from Woodbine House that help a new mom & dad know exactly what to do when, to help their little one with a little extra, know every last little thing they should!

21.  American Association on Intellectual and Developmental Disabilities

22. The Arc

 23. Disability Studies, Temple U 

24.  BLOOM

25. DownSyndrome

26. Down syndrome: Health Issues

27.  Down Syndrome for New Parents

28. National Association for Down syndrome

29. Buddy Walk

30.  Special Olympics

31.  R-Word,

32.  The National Down syndrome Congress

33.  National Down Syndrome Society

34.  NDSS National Policy Center

35.  Patricia Bauer

36.  Oz Squad

37.  Reece’s Rainbow

38.  The Recreation Council of Greater St. Louis

39. The T21 Traveling Afghan Project

40.  Jennifer Graf Gronenberg , Kathryn Lynard Soper , Gifts and the other Holland officienados who will help you get there

41. Down Syndrome Pregnancy support and resources

42. And all  the amazing bloggers that share our daily lives and experiences. Check the sidebar here for just a few. Yes, really those aren’t anywhere near all of them that are out there. As you visit them, note their sidebars and all the others that have graced us with just a little of their time, energy, wisdom and charm so that we know that nowadays- we aren’t alone. We’re in this together. It takes a village, and I’m grateful for mine.