Nora

Please pray for Nora. This little girl has brought so many to Christ just by existing. She is a message of light in the darkness of this world that tells us that we are only valuable based on the material we contribute to the world.

I knew Nora had Trisomy 18 before I knew Mariana had Down syndrome. Nora's condition is probably the reason I received Mariana's diagnosis with such peace. Nora hadn't even taken a breath yet, but she had changed my heart and made Mariana's life more appreciated. Scott and I could only see Mae as a blessing after knowing what a blessing Nora was while still developing in her mother's womb.

God, Father of Mercy, grant the Yusko family peace. Grant Nora complete healing and a long and healthy life with her family. Servant of God, Jerome Lejeune, pray for Nora and her family and her care takers, that all that can be done in service to this little life be done, that each doctor see Nora as a messenger of hope and treat her with the dignity any child deserves and the respect that all life demands.

Heavy Quick Takes (or, Get a Grip Friday)

--- 1 ---

This past week, y'all. Whew! This has been a fruitful Lent. The weekend was really great with a fun birthday party at Charlotte's friend's house. The parents hung about chit-chatting while the girls got their nails and make up done. I brought Mae, who was automatically the Belle of the Ball. That night we had Grown Ups Game Night, which was funny and silly and whew, no stress, unless you count Scott's campaign for a baby so that we can name him/her Frances/is. (I know I'm blessed my husband wants so many children, but I don't think a new papal namesake should be part of the discussion.)

Sunday was fun with a trail run and CCD with the 7th graders, where I taught them P's PreK lenten song to the tune of Frere Jauqes:
"Prayer and fasting and almsgiving
We are meant, to repent
Forty days of sacrifice
Being extra super nice
This is Lent
This is Lent"

This was our effort to get the kids to recall the three lenten practices of prayer, fasting and alms-giving.  It's nice to know the tuition to Catholic education pays off and that my 3 year old knows what 7th graders struggle to learn.

--- 2 ---

Monday. Oh someone just let me forget that day, please! First of all, Scott took C to her pre-op because I had to get more bloodwork done. I've been a mess of mystery symptoms and had two blood draws scheduled to coincide with hormonal shifts. (Yay for doctors who don't start prescribing medicine before figuring out what it going on!)

Monday's draw was terrible. I felt "off" anyway, but just a tad. As I was waiting for my turn I watched as a phlebotomist  dug around for an elderly woman's vein. I'm not usually squeamish, and the elderly woman didn't seem too concerned about what was happening, but I began to get dizzy watching. When the other phlebotomist started my draw I got instantly woozy. She informed me I didn't look so well, and I informed her that, coincidentally, I did not feel very well. I began to hear a high-pitched squeal in my ears and see flashes of light. And then I heaved. So, that happened.

--- 3 ---

This Quick Take is dedicated to asking the question, who here gets frustrated at God?

In finding out that my thyroid is malfunctioning, I really didn't know what to do with that information. Quite frankly I  felt like God was being a jerk to me. I knew logically that this was stupid and the intensity of my overbooked life combined with my faith was no ward against further suffering, but I really felt entitled to a damn break.

This is the frustrating thing about being Catholic. The combined belief that God always has my interests at heart, and the pragmatic view that life is messy, throws me for a loop when I find I feel like God owes me a pass on tough situations. I didn't expect, and don't expect, God will protect me from drama, but I found myself making these arguments to Him in frustration. "Why can't you just give me a pass? Do you not realize that I am confined by hours in a day? What is your problem?"

Am I alone in my God rants?

--- 4 ---

So, having had a few days to examine my issues, I think I've concluded that the only path through this particular point in time is to grow in humility. Not that I'll be a passenger in my own life.What I mean by humility is submission that I may not have all the answers right away, but that I must be receptive to God's call even when I don't understand. I don't understand this health issue I'm facing and I hate it. I feel angry about the changes I am going to have to make to become healthy and I feel very angry about being dependent on medication. None of my feelings change reality, so I have to learn how to submit to God's will, which of course is to face reality and be brave...and grateful.

--- 5 ---

Was I scared the day of Mariana's surgery? Yes. The informed consent is scary enough, add the risks to a child with Down syndrome and the fear is exponential. Lately I'm afraid for Mariana because I keep learning disturbing health risks to children with Down syndrome. Again, I take this as a call to humility, and even more terrifying, trust. I know I'm a control freak, but this idea of trusting in having the strength and resources to forge ahead is not bringing out the best in me. My weak points are becoming more exposed with time. I can't help but wonder, is this a good "cleansing" thing, or am I going to buckle under all of this?

So far, I'm going with "a good thing". It's kind of how watching Pope Francis perform all those "normal" tasks and works of mercy is like holding a mirror up to my own pathetic attempt to call myself a Christian. All these trials we're facing just expose the places we need to fortify in ourselves. Trusting that God will protect us while we do the work is really scary, but what choice do we have? There is no good alternative.

--- 6 ---

This has been a very heavy Quick Takes, so let me lighten the load with the revelation that Mariana seems to be saying, "No-no" to us during meal times. Princess does not like to feed herself. She is a very "in the box" thinker, so a change in routine is next to heresy to this darling. When I try to guide her hand to hold a spoon or pick up some food, she flails and yells, "Nah-nah-nah-nah!" It's funny because it's not your kid doing it.

--- 7 ---

Ah, the last Quick Take, finally. I shall end with a few tid-bits:

I did not faint or heave during my blood draw on Thursday.

My kids get swim gear instead of candy from the Easter Bunny.

I accidentally ordered a swimsuit for C that is back ordered.

I hope Mariana looks exactly the same in heaven as she does on earth.

I am listening to one of my children throw a tantrum.

I'm actually okay with it.

For more Quick Takes, visit Conversion Diary!

Mariana's Surgery, as told by Mariana

True story, I had a gut wrenching post filled with emotions and rants at God, but then I couldn't find a way to end it, so suddenly it's today and Mae had her surgery. In a nutshell: My thyroid had too many responsibilities and couldn't handle the work of keeping me sane, regulating metabolism and helping me think. It resigned much of its duties and now I probably need Real Medicine(TM).

Mariana however had Real Medicine(TM) surgery today and would like to tell her harrowing tale with pictures!

"Hi. My Dada woke me up this morning and changed my diaper, but not my PJ's. PJ's Uncle John sent for Christmas addressed to MariJohnna. This is because he forgot that he had sons he could have named after himself. Mama took me downstairs, but no one gave me my bottle. Instead I took a car ride to a weird place with toys. And then they took me to the back.

Y'all don't even know.

At this point I was weighed, poked and squeezed like a common farm animal up for auction. People were all up in my face saying, "HI!" and then not even giving me the time to say "Hello." back to them. Instead they got busy asking mom personal questions about my medical history and my heart and suddenly it felt like this was some serious business.

I recommend the hospital gown.

After that I was asked to undress and put a robe on backwards. Just kidding! No one asks me to do anything, they just treat me like a dolly. Of course I had to sample my new duds, and they were really quite good.

Seriously the arm is fantastic on this robe. Very soothing on the gums.

All sorts of people came in to talk to my mom and opine about my good looks. If I were any less a person I would have a huge ego. But I have siblings and I know that I come from a long line of beautiful people. I'm just one of many.

While we are on the subject of pretty people, wanna hear a funny story?

All my sisters and my brother got in my parents' bed last night! Mom and Dad had to get up at 4:45, and then climb out of bed without waking all the sleeping masses, and then get dressed super quiet-like. I can only imagine the hilarity that ensued.

The hospital is cold, but it just revs my engine and I felt very confident that whatever was going to happen would be fun. "Stents" sounds like a cool trick and "Naso-lacrimal ducts" sound like we were going to feed the ducks. I'm in!

Whoa, what? Yeah, they started talking breathing tubes and going to sleep and needles, which, nope that's not really my thing. Imma just step out for the bathroom real quick, mkay?

Mmmm. Apple juicy.

Next thing I know I'm sippin on juice, laid back. No screaming like the kids in the other recovery rooms. They must have not had any juice, the poor dears.

After my first bottle of juice was gone, I had to drink another bottle. I didn't have to, like, you know, requirements or anything. I just cried and coughed and they brought me some. It's like magic, only more pathetic.

And then Dada and Mama brought me to a diner where I ate eggs and yelled at them for being too slow at feeding me. I was stahvin!

Fun fact: My eyes tear more than ever thanks to the stents, and so everyone feels pity at the site of my beautiful face as tears stream down my cheeks quietly.

 

The remainder of the day was spent asleep and then Mrs. J had the nerve to show up for therapy. Then there was eating and yelling at the people who do not feed me any longer because of reasons like, I can do it myself, and, I need to learn independence.  The only time I'm willing to feed myself is when a lollypop is clutched squarely in my fist, something that used to be considered therapy and now is considered taboo. I've about had it with people changing the rules up in this joint.

In conclusion: I had surgery. I woke up. I ate. I slept. I pretended to work out. I slept. I ate. I took a bath. Tomorrow I will pitch a gigantic fit when Mama puts food on my tray and walks away.

Habemus Papam/Habemus Dentem

--- 1 ---

I have been absent recently for a host of reasons. We took the big girls to Animal Kingdom, we have had one child have an allergic reaction to medication, we have had forty million appointments with doctors and therapists and dentist. (Oh my!) Mae is inching closer to her surgical date and C is getting her tonsils out.

Even so, I have had the luxury to commune with all my brothers and sisters in the Church to watch the conclave, and, with my own eyes, watch the white smoke appear atop the chapel. I have felt so filled with gratitude for my Church. I love the pomp and circumstance, the privacy of the conclave and the humility of the man who ultimately became Pope Francis.

I adore the "many parts" theme this particular time in the Church has on display. We had Benedict, who reminded us that edifying beauty that formality can communicate. We have the conclave that reminds us that many good things are done in private and shared with few. We now have Francis, the man whose simplicity and humility reminds us that works of mercy are crucial element to living out the gospel. My heart swells with love every time I think of the man bowing at the waist receiving the blessing from the universal church. That one act reminds the laity across the world that we are the Church. I love him already.

--- 2 ---

Charlotte's bout of strep has led us to the ENT, which has led us the the conclusion she needs her tonsils out. She is freaking out a bit, and I have no way to comfort her. There is no talking C out of those moments. Her surgery is scheduled for Holy Thursday, and as God as my witness, I wish I could schedule it for another day. However, First communion is in May and she really can not miss any more school after our strep/amoxil allergy one-two punch.

--- 3 ---

Habemus dentem! We have a tooth! Yes, Mariana's little tooth bump is now an official member of her oral cavity. If we had a chimney, I would send up the white smoke. She is not crawling still, but that will be fireworks rather than smoke. And t-shirts. And possibly private label whiskey.

--- 4 ---

Animal Kingdom = Awesome. We took the kids down to Scott's mom's condo. Unfortunately Kiki wasn't feeling well, and we had bigger concerns than Spring Forward. We went to mass and then met his grandparents for a little birthday dinner. I made sure to bathe Mae before Grammy held her so that she would have Grammy's perfume on her later. We all love Grammy's smell.

As luck would have it, Kiki felt okay-ish the next day and had help come to the condo while we set off for AK. It was a short drive there with the music blasting. We started off with It's Tough to Be A Bug, which is one of those 3D creep fests that scares the living breath out of normal children. It's loud, has a tarantula shooting darts at the audience (3D video) and then talks about fogging the audience in retribution for all the bug fogs in the world while filling the theater with fog. Poor Molly had a nervous breakdown in the damn thing.

BUT! the day was was not lost. We headed off to the safari, and then onto the rapid water ride, where we got drenched and learned Molly loves the coasters. We did the entire park, ending with the Dinoland area. It was a blast. I took Kate on Everest twice and paid the rest of the day. We also road the rapid ride 3 times in a row later. Scott and I loved just giving over to the kids and letting them enjoy their special day.

I forgot to mention that we brought all of our food to Animal Kingdom. It made for a really awesome day in that the girls' energy was top shape, and we saved about $200. One backpack was filled with water bottles and cold items, the other with our dry goods like trail mix and NutThins. Scott and I carried the back packs and we could eat any time without wandering around trying to find the healthiest option.

Another bonus was that the park closes at 8. We had an hour drive home, and the girls were tired, but not overtired into crankyland. Everyone had fun and left with a smile without feeling like they were missing something because the park was closed. Magic Kingdom closes at 1. Thank God they chose Animal Kingdom!!!!!!!

--- 5 ---

Speaking of teeth, we found a wonderful local dentist only seconds away from the kids' school, and he has Saturday hours. Kate had 3 cavities, so that was unfortunate, but he filled them with no gas or numbing. It took him 30 minutes! I took Paul today for a cleaning and they were so amazing. Also, Kate has flossed every single night since that check up. This dentist is a keeper for sure!

--- 6 ---

Grammy, you smell good!

PHOTO BREAK

On our way to AK!

Bongo Girls

Daddy's wingspan!

The mother rhino pooping was a highlight....

Before the Trauma

Jamba!

 

Mommy's least favorite place - the petrie dish, I mean, petting zoo

We live in Florida, we aren't scared of snakes!

Good Daddy

In the croc tank.

Oh, only our friendly neighborhood Wolf Spider.

--- 7 ---

Should any of you readers like to send us prayers for the girls' surgeries, we'd sure appreciate it. Mae's should be routine, but she's only a baby. Charlotte is terrified and could use some peace about what we need to do, and her recovery depends on her cooperation with drinking fluids after. 

For more Quick Takes, visit Conversion Diary!

Birthday Bash

Hello! It's Mariana here. I feel I need to report on my own birthday since my Mom is still cleaning up the mess.

Look at mah belly!

Yesterday I had an appointment with the geneticist, Dr. P. He had a TIGER ON HIS LISTENING THINGY, YOU GUYS! I gave the tiger what for about our two hour wait, but not Dr. P. He's cool. Anyhow, I am officially an over-achiever at gaining weight. I am 18 lbs, which I have to say, is amazing. Dr. P. also said, and I quote, "We have a little baby genius here!" on account that I have more than 5 words. But guess what? I have a surprise to reveal later!

This is my brother who is choosing to annoy me at this moment. My mom bought me this sweet headband to rock on my birthday and, well Paul is a bit of a camera hog. I'm not gossiping here, it's a pretty well known fact. I adore that giant goof-ball. He's my best buddy!

Now, my mother is snapping pictures of me blinking here. Not cool, Mom.

Much better! So it's my birthday and I have another visit with Mrs. J. She is pretty fun to play with. I like that she makes me do stuff and helps me get stronger. I give her the business sometimes, but it's all because I was born stubborn and I have to see if Mrs. J. really means she wants me to do stuff. BTdubs - She does.

So, I'm really excited to tell you about something I've been planning for my mom who wanted to get a speech consult for me. I'm going to surprise her today with something...

I'm going to add two words to my vocabulary! Shhh!

This is my cake for my birthday! It is chocolate, which I have never tasted before. I don't get the excitement about it. Between you and I, brown food might not be my thing. We'll see.

Now, this I can get excited about! This is my name stool from Grandma and Grandpa. I LOVE IT!

I am saying "Yay!" and I am clapping while I say it!!!! CAN YOU BELIEVE MY AWESOMENESS? No you cannot! "Yay" is one of my new words. I really like it!

Let's discuss the fact that my mother, a Catholic, has put me in an Easter dress during Lent. Well frankly, I picked this dress today. And it was on sale. And I look adorable in it. My mom can't resist my charm, it's not really her fault at all.

These are some of my friends and two of my sisters. Left to right - Kate is holding my friend J, she is so much fun! K is holding me, she is my brother's friend's sister. Molly is holding M, J's twin brother. The Chicks are the bomb because they have 8 people in their family, so when they come over it's an instant party. Also, the twins are only 6 months old. They are a family of small giants, I think.

So then my mom gives me a taste of Chocolate cake, and I'm all, "Whaaaaa?" It took me a while, but I started to realize that I was going to have to get the cake to my own mouth, which, duuuude, there would be success.

Are you kidding me, Mom? I really can't believe my luck and that this stuff tastes so amazing.

Only my mom lets me mess up my dress and then puts a bib on... Just kidding, I wanted the bib on after she took my dress off, because I like things my own particular way, yo.

I mostly knocked all the cake on the floor, but I did put some in my mouth on purpose! I also squished it in my hands and then sucked that off my fingers. Whatever, it was delicious!

This is my other new word, signing "Thank you"! I did it several times today, and God help my mother, she almost had a heart attack. Two new words in one day. I now can say, "Mama, bye-bye (bah-bah), more (mah), yay" and I can sign "Please, more, eat, milk, thank-you" and I wave and give hi-fives. I was supposed to have 5 words by 15 months.

So, yeah, this was overwhelming a bit. I am both tired and reluctant to leave my seat.

Perhaps just a lick...NOM NOM NOM

I felt I might suck the chocolate off my tray. What? I've never had this before, don't judge me!

All in all, the day was a success. I will say I was terribly tired tonight. I mean, I did have all of my blood drawn out the day before, which my mother held me down to get done. I have decided to forgive her though, so no hate mail please. With the well wishes and the fun toys and the lovely company and the communication successes and the chocolate, it really was my best birthday ever. So, Good Night friends. Thank you for all the lovely blessings.

Baby chub for your viewing pleasure. You're welcome.

First Year

Can it have been a year, 12 whole months since we met? It's odd to think of that day. In the morning I didn't even know her yet, but by that evening I knew I had met our whole family's soul mate. I think of that day and I grow pensive. I think of all the things leading to her birth, the chaos of that experience, and the utter peace that came with her diagnosis. It makes no sense on paper, but there you have it, she is exactly who we were waiting for those nine months.

I should have known what would happen this last year. The whole time I was in the hospital I cried for all the wrong reasons. First for fear of her heart, then because I couldn't hold her, then because I couldn't nurse her and last because they took her away to the children's hospital. I acted against my nature from day one. I didn't care about that extra chromosome as long as she was healthy. I rested, I took my medicine, I stayed away from researching obsessively and I trusted her doctors. I cared nothing for the superficial inconveniences or the baby we didn't get.

A year later I hardly recognize myself. I assess all of her shortcomings for the sole purpose of making a To Do list and to communicate to the specialists. I am not worried she is not progressing the way I would have expected. I can be honest about her development and I do not grieve that she is not someone else. And I'm more honest than ever.

I look at myself and I no longer bury my shortcomings. I lay them bare and make plans to be better. When I fail it is only temporary because, though I've made little progress, I know I must keep at it the way she must keep at it. She and I are the same.

It is hard to watch her struggle. It is hard to force her to repeat the same things everyday, to label every thing we see or touch or smell. On the outline of my consciousness I am tempted to be frustrated and feel sad. But we chase those thoughts away with our songs and our snuggles. Who cares if she is slower than I wish? She hugs me and reaches for me and smiles. That's all I need. That face helps me focus on the reason we work so hard - love.

It's hard to struggle to be better. It's hard to practice patience and to treat each child as an individual every single day. It's hard to get exercise and to do house work and fit it all in. I fail every single day. I am tempted to feel sorry for myself and feel like a failure. (We bought this house 4 months ago and nothing is "done" yet!) I chase those thoughts away with my list of what matters. God, Scott, our kids, our family, our friends, our community... the list can get quite long. Suddenly I am focused again on love.

I didn't want her to become the sun to our universe. I didn't want to make her our family mascot. Each of her siblings matters as much as she does, each is special and key to our family. How is Mariana key to our family? Mariana asks us all to be our best all the time, to forgive our shortcomings every day and wake up ready to start again each morning. Mariana has done more in one year than most do in a lifetime. This child does not crawl, but has moved the rock hardness of our hearts.

Happy birthday Ms. Mae-Bee. Thank you for the best year of our lives.

Quick Takes - still with zero editing!!

--- 1 ---

I keep meaning to blog more. I keep meaning to do a lot of things. I've said it before, and it bears repeating; I'm going to have some top-quality pavement if I go to hell. But what has kept us busy is a host of wondrous duties that include a dental appointment, an emergency doctor visit, a misbehaving four-year-old boy, a stubborn and ill mannered baby and a five year old who needs a little extra attention because there isn't anything wrong with her at all.

I've learned to pay attention to the kid who doesn't need it. When everyone is sick and off kilter, the one flying under the radar is usually feeling left out. There is nothing worse than watching your kid self destruct just because she wants a little of mama's focus. Scott and I are making a concerted effort to wrap our arms around each of the kids and work them into even our most mundane tasks. Molly now gets to read to me while I cook dinner, which is usually the time I stick in my bluetooth and listen to Catholic media. She's getting to be such an adept reader, and her voice is adorable, even if she doesn't have the inside scoop on the conclave

--- 2 ---

So the media coverage of the papal abdication has been fascinating from a sociological point of view. The secular media is down right hilarious, if you don't take it too seriously. The people they choose to call Catholic "experts" Yahoo even had a lovely little piece on Andrew Sullivan's take that the Pope is gay. I probably should have gotten offended, but I was both tickled and saddened by it. It made me laugh because his reasons were:

He's soft spoken, has nice shoes, has a handsome prelate and is choosing to keep his prelate in his abdication.

Here I was under the impression that it takes something a bit more to be gay. Silly me.

The sad part about it was that it's clear that Andrew Sullivan couldn't see that what they were calling a "celibate love affair" is a friendship. It seems to me that he could not separate love and affection from sex. How incredibly sad.

--- 3 ---

Speaking of the Pope Emeritus, the very sweet news of his driver bursting into tears after kissing his ring just warmed me. I love that of all the people who were saying goodbye, the common man showed exactly the right emotion. The cardinals were calm and collected, others were cheering and yelling their goodbyes. The driver knelt, kissed his ring, and cried. That's my favorite story from the entire day.

--- 4 ---

Last night I started a notebook for Kate and one for Charlotte. As I said, Scott and I realize that we are very busily busy, but sometimes our kids need us while we are otherwise occupied. So I bought two notebooks and wrote a note to each on the first page. They were simple notes. In one I commented on how This is the third pope in Kate's life and Charlotte was born when there was no pope. In the other I just commented about how I used to write notes in grade school all the time. I hope we can keep up with it and just remind each other of our affection even when things are crazy.

--- 5 ---

Mariana is still not crawling. I realized, after my dear friend Mary commented on the last week's post, that I may have never explained why crawling is such a big deal. Crawling helps the left and right side of the brain communication. The pressure she puts on her hands is key to her fine motor development and the longer a baby crawls the better for brain development.  Many children, Charlotte included, have crawling as part of there therapies even at older stages. Charlotte was completely ambidextrous, and with that came many issues, especially in reading comprehension. Part of the solution was to have her crawl around the house several times before sitting down to do school work. Crawling is a big deal.

Now, many children don't crawl, or crawl for a short time before walking. Many times they compensate with other skills to help development. The problem is, Mariana won't just crawl when she's ready. She won't compensate with similar skills. Instead, as she gets stronger, she has begun to move with compensatory motions. She scoots on her bottom, she writhes her way forward, she rolls. There are so many benefits for her if she crawls, so we are doing what we can to encourage that. We prop her up on all fours and put things in front of her that are interesting. We move her legs and arms in a crawling motion while making certain we don't topple on to her. It's exhausting, but we do it because even if she never uses crawling as a mode of transportation, she will have to do it for therapy.

--- 6 ---

How's your lent going? Mine is quite sacrificial, thanks for asking. I hope a lot of souls are getting to heaven. I can't find the source, but I heard on Catholic radio that the original purpose of Lenten sacrifice was to join in prayer with the "elect" or those who were preparing to come into the Church on Easter Vigil. In other words, the entire church made sacrifices and fasted for the sake of those who would join them. I love that, and I wonder why that is no longer highlighted in today's world. 

--- 7 ---

 Please pray for Charlotte. She is suffering from an allergic reaction and still has strep. She may need steroids, but the doctor hasn't returned our call yet and it's the weekend. Right now her feet are swollen, itchy and hurt. But she's so dang cheerful. I love that girl!

For more Quick Takes, visit Conversion Diary!