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Wednesday, December 31, 2014

The View from Last New Year's

About a year ago, either just before or just after the first of the year, James and I went out on what must have been our first date since Henry had been born. My mom was still in town and she stayed with the babies so James and I could go out to dinner.

After dinner, as we walked the dark streets back to our car, I confessed something very sad to James.

I said, "I feel like we have nothing to look forward to this year."

 I feel like we have nothing to look forward to.

How could I say such a thing?? How could I feel such a thing??

At that time, Henry was 5 months old, which means I was 5 months postpartum. I would not doubt that I was suffering from some level of postpartum depression.

But the bigger burden I was carrying was the pain of coping with Henry's diagnosis. A diagnosis which we were keeping quiet about, at the time, except to very close family and friends. Another diagnosed genetic anomaly in our family. A diagnosis which, at that time last new years, still felt very much like an open wound.

I was grieving. Not for the beautiful baby that was Henry, but for all the things I believed that his diagnosis stole from him. And all the things I believed it stole from our family. I was filled with fear for him and for myself.

Will he ever walk? Will he ever talk? What will he understand?? 

How can I possibly care for two special needs children?

I am ashamed to admit it, but I feared that Henry would be a burden that I would never be free of.

I also felt guilty for having given birth to another genetically abnormal child. It is still very hard for me to truly believe that it wasn't my fault. I still have my doubts. Maybe if I had been healthier. Eaten more organic foods. Waited longer between pregnancies... maybe I could have spared my youngest child the challenges that lie ahead for him.

I was also angry. How could this have happened to us AGAIN?? Why us?? Why our kids?? It felt so unfair.

I had spent my pregnancy imagining all the things that would be good about having two boys so close in age. I thought our biggest challenge would be parenting such closely-spaced siblings. So the optimist in me was dreaming of all the ways it would be awesome instead of hard to have two little boys. I imagined how much fun it would be to see them running around together at the playground. I imagined that having a typically-developing brother close to his age might help Calvin with his speech development. I thought we'd be able to travel sooner, take family vacations sooner, because we'd be out of the diapers and bottles stage faster than families who wait longer to have their second children.

And when we found out about Henry's diagnosis it felt like all those dreams got ripped away. Henry would not be running around with his brother anytime soon. Henry would not be talking with Calvin or with anyone else anytime soon, if ever. We would not be out of the diapers and bottles phase anytime soon, if ever.

I had also spent my pregnancy imagining how wonderful it would be to have a typically developing baby. I dreamed of being able to breastfeed a baby, of seeing a baby hit milestones at the times that all the baby books say they are supposed to happen, of having a baby that I could fairly compare to other babies of the same age.

And I knew because of his diagnosis that with Henry, once again, none of those things would happen.

For me, the view from last New Year's was dark. I looked at the year ahead, the years ahead, and all I could see was struggle. Sadness. Loss.

I saw doctor's appointments and therapy sessions draining our energy and time. I saw myself dragging through each day, weighed down by the painful feelings I was carrying. I saw us missing out on all the things that would have been possible if we'd been a "normal" family.

I was wrong. 

And I spent all year proving myself wrong.

Somehow I pulled myself out of the despair where last New Year's found me.

I took my placenta pills and I saw an acupuncturist to help me re-balance my hormones. I went to the gym. I went to yoga. I started running. I started reading a daily (or almost daily) devotional. I wrote down my prayers. A few friends and I even formed a mama support group.

I had to take care of myself in order to be a good mama. I had to feel healthy and whole as a person, as me, in order to take on the other challenges that I felt I was facing.

The year did indeed hold many, many doctor appointments and therapy sessions, and even a surgery and a couple of hospital stays.

But I made every effort to make sure that our year was also full of days at the zoo, picnics at the park, walks in the woods, and visits to museums and aquariums. 

We even took a couple of airplane trips. To Seattle to see a friend, and then to the southeast to visit family.

We made birthdays and holidays special.

On our days at home, we did art projects and sensory play and built train tracks and blanket forts.

And Henry and Calvin grew and learned and were happy.

Calvin started talking. It's very hard to understand him, but his little brain has acquired a lot of language and he is always finding new ways to show us how smart he really is.

Calvin is also daytime potty-trained! He still wears pull-ups at naptime and night, but he wears underpants (adorable tiny Hanes boxer briefs!) during the day and he can use the potty all by himself at home, or tell us when he needs to go.

Though Henry had a rough time with health problems, we were able to help him with guidance from his doctors and with a successful surgery to clear his airway.

Henry learned to roll over. To sit up. To scoot around the room. And now he is working very hard to build up enough strength to crawl and to stand. He works so hard, my little guy.

Henry is learning to eat "real" foods. Table foods, like the rest of the family eats. Over this holiday week he has eaten scrambled eggs and green peas, a buttermilk biscuit, and even some turkey! He is also doing better with swallowing thin liquids like water or formula with less thickener. We may be able to move past bottle feeding pretty soon after all.

When I make sure our days and weeks are filled with fun things to do and interesting places to visit, it's because I want the boys to have lots of chances to see and experience and learn. But it's also because when they look back at their childhood, I don't want them to remember it as just a long string of doctor appointments. When we all look at our life as a family, I don't want it to look as bleak as I thought it would a year ago.

I needed to prove to myself that our life could still be full and rich and happy. That the babies' diagnoses did not rob us of a chance for a joyful family life. That I had no reason to be afraid.

Here on the cusp of another year, I am not afraid. I am grateful. I thank God for my beautiful babies and my beautiful family. I thank God for all the joy the past year brought and for the strength that got us through the challenges. I thank God for all our happy memories of 2014. And I thank God for the lessons I learned this past year.

Now I can see what I could not see a year ago. That no matter what hardships lie ahead, we are strong enough to do the work. And no matter what those hardships are, they are not the whole picture. We will always be able to make space for joy.

So this year, I can say that I believe we have plenty to look forward to.

More experiences to learn from. Plenty of laughter and love.

Happy New Year.

Sunday, December 28, 2014

A Very Henry Christmas

We had a very merry Christmas at our house :)

Santa brought goodies for Calvin and Henry and there were more presents to exchange among the family. Lots of new toys and books and other fun stuff for everybody.

Cousins came over. Yummy holiday food was served. Our little home was abuzz with laughter and voices... smells of sweets and casseroles and fried turkey... Christmas music playing in the background... and toys and gifts and wrapping paper all over the place! Your typical Christmas day scene.

And it was wonderful and happy :) But it wasn't easy for our non-typical little Henry.

Henry is sensitive to loud noises and noisy places. He is ok with meeting new people or being around people we don't see often - but only if I am nearby. He is NOT ok with being left with unfamiliar people and if there are lots and lots of unfamiliar people, it is overwhelming for him. Even if they are people who love him very much and try very hard to calm him down and make him happy.

Sorry guys, it's not you... it's Henry :/

This is not news to James or me. We know these things about Henry. We have learned what upsets him and what calms him. Or, rather we are learning. Because, of course, as Henry grows and develops he changes little by little. But I don't think he will grow out of these sensitivities. On the contrary, I think he is becoming more sensitive as he becomes more aware of the world around him.

And it's ok. He is who he is. We can't change him, we can only try to help him. Help him deal with a busy and noisy world full of new and unfamiliar things. And not just deal with it, but hopefully find ways to enjoy it. And be happy! Because many busy and noisy and unfamiliar things are also wonderful things! Like Christmas day in a cozy apartment full of family and food and love.

So when I needed to be in the kitchen cooking and Henry cried and fussed at being left with anybody else besides Mama, I did what I needed to do for the both of us. I strapped him into the Ergo and did all my cooking with him right there under my nose. I delegated any tasks that I couldn't do with Henry in the Ergo, like moving dishes in and out of the hot oven, and my parents and cousins were happy to help. Henry calmed down and watched the rest of us from his cozy spot, safely snuggled up next to me. When it was time to sit down for dinner, I sat with Henry and fed him and myself. Other people served me food because if I tried to get up, Henry would cry. Henry spent just about the entire day attached to me until finally, it was time for him and Calvin to go to bed.

When Henry was asleep in his crib at last, I was so relieved. It had been exhausting keeping him close, keeping him calm, giving him my energy to help him feel safe and happy amid a very unfamiliar and noisy and busy day on top of chatting with cousins and cooking the food and trying to enjoy the day myself.

After Calvin and Henry went to bed, more cousins came over for more food and gifting. And tired as I was, it was nice to have more party to enjoy without my babies to worry about.

This is the first time that I really felt like a Special Needs Parent at a family gathering. It was the first family party where Henry's different needs were really apparent and in need of attention. What will I do next year when Henry is too big to be toted around in the Ergo?? I will probably need to make sure I'm not responsible for anything else besides Henry!

Parents with sensory sensitive kiddos, what do you do to help them through holidays and family parties?

Hard as it was, I really am not complaining. I'm just reflecting on the experience. I don't mean to imply that it was a bad one. I mean, it's not a bad way to spend Christmas - with your youngest baby snuggled up with you all day.

Parenting is hard work for all of us, after all, isn't it? And so is hosting a family party on Christmas day! Maybe it's a different kind of hard for parents with different kinds of kids, but it's also a different kind of happy :)

Henry and Calvin were thrilled with their new toys! Henry has come a long way with how well he is able to manipulate and enjoy toys and books and it was wonderful to see him pick up a big rattle-y ball - how strong he is getting! And grab little dinosaurs - how well he is grasping! And even stand at the table, with help, to see and touch the train set! And, as long as he was in my familiar arms, he shared his sweet smile and laugh with his grandparents and cousins. Friendly in his own way. And actually, he did let his great-grandmother Lola Coring hold him for a little while earlier in the day (before things became just too overwhelming for him). He loves Lola and she is more familiar to him than most other relatives because she lives upstairs and he spends time with her often. It is lovely to see Henry with Lola.

Calvin, of course, was the life of the party. He spent the day wildly playing with all his cousins and having a blast. He partied right through his naptime, and ended up crashing for a late nap just before dinner. He woke up grumpy, like he usually does, but his grumpyness didn't last long and soon he was back to being the life of the party and loving every second of playing with his cousins!

There was lots and lots to give thanks for. Lots and lots to enjoy. And we did.

I refuse to feel sorry for myself or Henry even when things are hard. He is who he is, and I'm his mama and we'll figure it out. Rejoice always. Pray continually. Give thanks in all circumstances.

For unto us a child is born.

Merry Christmas.

Wednesday, December 24, 2014

A Look Back at our Christmas Countdown

It's Christmas Eve!

Granny and Danpa are in town. My home is full of food waiting to be prepared for tomorrow and gifts that I still haven't wrapped. (I wasn't kidding about that wrapping presents on Christmas Eve thing!) I am so excited about having family over today and tomorrow to celebrate Christmas, although my apartment feels totally unprepared for it... But the cooking and the cleaning and the gift wrapping will get taken care of with a little work and a little help. It's Christmas! Miracles happen :)

I'd say our Christmas Countdown was a success. We skipped a couple of things, but all in all it was great to have a plan to fit in all this fun stuff and it kept me from being lame and staying in watching Dinosaur Train on some of the rainy days we've had this month (Yay for rain! But raincoats and galoshes and umbrellas make it extra work to get out of the house!). Like the day we went to the library to drop off our food donations. It was pouring rain and I did not feel like gearing up and heading out into the downpour. But I knew if we didn't go drop off our donations that day, then I'd probably forget about it because we'd be busy with our other stuff, or worse, I'd keep procrastinating and blaming it on the weather. So I pulled it together and we went, rain gear and all, puddles and all, which Calvin likes anyway :)

Here's a look back at some of the other fun stuff we did.

We read the story of Jesus' birth.

We made snowflake pictures. 

We read "The Gingerbread Baby" and "Gingerbread Friends" and then we made some gingerbread friends of our own!

The boys picked out new Christmas books. The Dinosaurs' Night Before Christmas,
and The Night Before the Night Before Christmas.

James cut down our Christmas tree!

And we brought it home and decorated it. 

Um... we tried playing with snow dough...

We donated toys at Sleep Train.

We saw reindeer at the Academy of Sciences.

We decorated a gingerbread house!

We went to see some fancy neighborhood Christmas displays.
And doesn't Calvin look adorable in those leggings?? They are actually pajamas :)

Here's Henry at the neighborhood lights in his Mickey PJ's :)

We saw Caltain's holiday train! And we donated toys to Toys for Tots at this event too. 

We made a Christmas tree picture. With sparkly dinosaurs! 

We saw Santa! Santaaaaa!!

Calvin made cards for two of his friends.

We went to see the lights at the zoo with our cousins.

And tonight, we'll leave out something yummy for Santa!

I hope everyone celebrating tonight and tomorrow has a very happy, warm-fuzzy Christmas :)

Friday, December 19, 2014

DIY Gift Wrap Ideas

It's less than a week until Christmas, so of course I have all my gifts purchased and wrapped under the tree.

Nope. That was a lie. I have not wrapped one. single. gift. I haven't even bought them all yet! Though, to be fair, I am relying on Santa for the bulk of our family's presents. You guys are all on the Nice List, right?

Well, if, like me, you will be doing all your lovely gift-wrapping on Christmas Eve in-between baby bedtime and Santa's arrival (because we all have to be asleep when Santa comes, obviously), here are some DIY gift-wrap ideas to inspire you! Then again, if these sound like too much work, I would encourage you to embrace the time honored tradition of easy peasy gift wrapping via gift bag + tissue paper :)

Brown Paper Packages - Dress up plain postal paper for unique gift wrap.

May Your Nails be Merry & Bright - Gift tag idea for nail polish gifts.

Wine Bottle Gift Tags 

Neon Lines  - Go crazy with washi tape.

Blooming Blossoms - An elaborate way to dress up a special gift.

What's your gift-wrap style? Crafty? Easy? Get it gift-wrapped at the store? Let your teenage daughter wrap most of the gifts? (I'm lookin' at you Mom and Dad!)

Happy Wrapping :)

Wednesday, December 17, 2014

Why this Dirty Oatmeal Dish Made My Morning

If you're thinking Seriously? Ew. Why would anyone open up a blog post with a photo of a dirty dish?? then, please bear with me! And, um, go ahead and scroll down so you don't have to look at it any more :)

That nearly-finished oatmeal bowl was a very happy sight for me because it wasn't my nearly-finished oatmeal or Calvin's nearly-finished oatmeal... it was Henry's! Henry ate almost a whole bowl of oatmeal for breakfast! Minus the dried blueberries. Not ready for those yet.

Here's why Henry's nearly-finished oatmeal bowl is a big deal. At 17 months old, Henry's diet is still primarily formula and purees. This would be a typical diet for, like, a 6-month-old. Typical kids Henry's age can eat a wide variety of table foods - they can generally eat what the rest of the family eats. Calvin could at that age (although he wouldn't, picky-eater that he is...). I realize that given Henry's medical and developmental history of course he doesn't eat like a typical kid his age. But it is so exciting and such a huge relief to see him make progress!

We've been working with a feeding therapist since April of this year. In the spring, he progressed from plain purees to thicker purees, to being able to eat purees with cracker crumbs sprinkled on top. From there, I tried feeding him more textured foods that were still similar to puree: things like couscous in tomato sauce, rice in thick soup, and oatmeal. But when offered those kinds of foods that had little particles unlike a smooth puree, he kind of panicked and hated it because he just couldn't seem to move those little pieces to the back of his mouth to swallow a bite. His oral motor skills couldn't deal with those textures yet. So I backed off.

And then he had his surgery. 

Immediately following his surgery he took few steps back to really thin purees until he was fully recovered. But since mid-November, he's been making much faster progress! His feeding therapist feels that his breathing difficulties before the surgery were making it uncomfortable for him to eat - totally understandable! - and this was keeping him from developing his oral motor skills. Now, with his airways opened up, he has progressed to thick purees and even pieces of very soft foods. We started with cubes of banana and avocado, which would essentially mush into a puree in his mouth. But this week he was even able to eat small pieces of pasta! Rotini pasta!

So Tuesday morning I went for it with the oatmeal. I was like, Ok, Henry. It's time to try this again. You're gonna do great. You're a much better eater. You ate rotini pasta. You eat guacamole. You can eat oatmeal.

And he did!!! He ate almost a whole bowl of instant blueberry oatmeal - minus the blueberries :)



I realize that oatmeal is not actually a huge deal when it comes to developing oral motor skills... even for Henry. But the oral motor development part is not the only reason I am excited about him eating oatmeal. Here's the other thing...

Oatmeal is big people food.  It's a "table food" as I've heard our docs and therapists and nutritionists call foods that are not specifically for babies. And the more table foods that Henry can eat, the fewer batches of fruit and veggie purees I have to blend up! The fewer jars and squeeze packs of organic baby food I will need to buy! The more foods he can share with the rest of the family! The fewer foods I will have to prepare for a single meal! We can all eat oatmeal for breakfast!! Hallelujah!

So here's to that dirty oatmeal dish. I washed it with pride.

If only all our dirty dishes were that exciting to me! Ha!

What did your kids do this week that made you say "Hooray!" ?

Monday, December 15, 2014

It's Tradition!

One of the most wonderful things about parenting has been making seasons and holidays feel special by starting our own family traditions. I love the ritual of it. I love how traditions make big, broad things feel close and personal. I love how traditions keep us engaged in why certain days or events or seasons are special to us. So I wanted to write about the things we do to make Christmas special for our little family.

We start the season with the story of Christ's birth. 
I've already shared that this is my favorite picture book version of the nativity story. The text comes from scripture, and the illustrations are really touching and lovely to me :)

I just love this little picture of newborn baby Jesus peeking out!

We count down to Christmas.
This year I made our first Christmas Countdown Calendar. This was a way for me to fit in all the big and little things I wanted to share with the boys this Christmas season. Frivolous and fun things like making gingerbread goodies and making holiday crafts, but also acts of service to help us remember that this is a season of giving.

Calvin hands over a toy as a gift for a foster kid at Sleep Train.

We collect Christmas books.
We have lots of Christmas books, but each year each kid gets a new special book for his own special collection (which of course he has to share with his brother :)). Calvin's first one was Christmas Parade, then last year he added Dream Snow and Henry got Christmas Peekaboo. This year, Calvin chose The Dinosaurs' Night Before Christmas because he loves dinosaurs so much! The best thing about this book is the elaborate dinosaur carols at the end including "Hark the Pterodactyls Sing" and "The Allosaurus Chorus!" Henry's book this year is Richard Scarry's The Night Before The Night Before Christmas. (And that is not a typo, that is the title.) Calvin actually picked out Henry's too because Henry thought all the books looked delicious and couldn't decide for himself ;)

We collect Christmas ornaments.
Our Christmas ornaments are special because not only do they make our tree nice and pretty, but they tell something about our lives each year. The boys each get their own every year and James and I get one together. James and I started our collection in 2006 when we were engaged and we have added to it every year since then. Here are our new ones for 2014!

Go Giants!! World Series Champs!! We <3 our home team.

A sweet sleeping raccoon for our sweet Henry and his journey this year to sleeping safe and sound.

This is Buddy the T-Rex from Calvin's current fave show: Dinosaur Train! Buddy even has a train ticket in hand!
I am so obsessed with our ornament collection, I just might give it its own post...

We play Nativity.
Sometimes with a train... because trains. Last year I agonized over finding just the right nativity set for our family. James remembers playing with a plastic nativity set that he had when he was a kid, so we wanted something kid-friendly, but I just wasn't feeling the Little People nativity and I really wanted a set that at least made some effort to be ethnically plausible. Turns out that was a lot to ask, but we settled for this one from Bible Toys. Most of the people in the set still look European, but at least Joseph and one of the magi are a little tan...

In the future, there are other traditions I'd like to start. When the boys are old enough, we will start taking them to an evening church service on Christmas Eve. And starting next year, I'd really like to do an advent wreath with candles. I kinda wish I'd done it this year... oh well. Next year! And when they're older, I would love for them to tell me what things they want to include in our Christmas Countdown.

But enough about the future! It is already amazing to see how much they have grown since last Christmas. Last year, Calvin was really interested in all the animals in our books about the nativity story, but this year he seems to actually get that the story is about a baby being born. It's really touching to see him understand the story on a whole new level. And Henry was just a teeny thing last year! This year he is crawling around, reaching for ornaments on the tree, chewing on the nativity figures... I realize that those things may not sound that great, but for Henry's delayed development, crawling around and selecting toys are a big deal! Henry is also starting to attend to books with more focus and his Christmas Peekaboo book from last year is a big hit with him this year! He sure loves a game of peek-a-boo.

Here's one more tradition: We see Santa!
I seriously hope that one day Calvin and Henry have a collection of Santa photos to rival those two brothers who were featured in Huff Post Parents for their 34 years of Santa pictures together.

Is your family getting into the holiday spirit? What are your favorite holiday traditions?