If it Had Been Up to Me...

If it had been up to me.....

We would have started expanding our family much sooner than we did. I was the one who kept bringing up the topic of children. Jason certainly wanted them, but while I could only think of cuddles and cute onesies, he was thinking of how we would manage a growing family. The poor guy. Each time a friend announced a new pregnancy, the discussion about children would start up again. I remember a very specific time when I burst into tears after hearing about another friend's impending addition. Eventually, after 6 years of marriage, I convinced him.

If it had been up to me, we would have missed out on Abby.

If it had been up to me....

We would have had a typical birth story. There would have been no need for a frantic trip, 6 weeks too soon, to the hospital.... in the middle of the night.....through a snow storm. There would have been no need for an emergency c-section. There would have been no need for Abby to be flown by helicopter to a bigger hospital, while I stayed behind. It wouldn't have been two days before I could see my daughter, or six days before I could hold her.

If it had been up to me....

It wouldn't have become normal to leave our newborn each night in the NICU, while we stayed with family. We wouldn't have had to make due with "Abby Upates" by phone when we were missing our little one. It wouldn't have been a month before we could bring her home.

If it had been up to me, I wouldn't have seen so early that my daughter has the heart of a lioness.

If it had been up to me....

I wouldn't have had a child with a heart defect.....or diabetes......or Down syndrome. Abby wouldn't have had to have so many doctor's appointments in her young life. She wouldn't have learned that those trying to help her, sometimes hurt her in the process. Abby wouldn't have had enough shots and finger pokes to make the bravest of people shudder. Abby wouldn't have to work harder to learn what might come easily to others. Abby wouldn't have learned early on that she lives a world where others, even whole countries, think her life wasn't worth living simply because she has one extra chromosome.

If it had been up to me, I would never have known the incomprehensible joy that Abby brings to this world. 

You cannot imagine how very thankful I am that none of this had been left up to me, because I cannot envision a world without Abby in it.

Tomorrow is World Down Syndrome Day.

Tomorrow I encourage you to fill your day with joy - in honor of Abby. Wear your mismatched socks, and when someone asks you why, use that as an opportunity to tell them your favorite Abby story. Tell them how fierce and funny she is. Tell them how she dances and sings through life.  Tell them that she is so very brave. Tell them that she has a smile that lights up a room and a laugh that tickles your ears.

Tell them that we need more Abbys in this world, because now, if it were up to me, everyone would be able to experience the joy and warmth of Abby's light.

Happy World Down Syndrome Day 2018!!

A New Frontier

When I first held Abby, nearly a week after she'd been born, I could hardly see past the next few hours, let alone envision what our lives would look like down the road. Hormones, middle school, the teen years, high school?....Those seemed miles and miles down a road we'd just begun.

Our focus became getting her to breathe on her own. Step. Next came the task of building her endurance to drink three ounces without falling asleep. Step. A wireless baby? Yes, I'll take it! Step. Finally, she weighed over 5 pounds, which meant we could take her home. Step.

There have been so many baby steps along this road, that I've failed to see how very far we've come. I feel as though at some point Abby, started running, and I have yet to catch up. And so here I sit, wondering how it is even possible for that tiny baby I held so long ago to be a teenager.

Today Abby turned 13.

We've traveled those miles and miles and now the things I didn't need to concern myself with "way back when" are right before us. In so many ways I feel just like that new mother sitting beside her daughter's hospital bed. I have the same questions I had back then. How will we know what is best for her? How will we prepare her for the challenges she will face? How will we protect her from cruelty? How will we help her come into her own?

It would be easy for me to get discouraged by this feeling of being back where we started if it weren't for one important difference. You see, I have something that 2005 Elizabeth didn't have. I have a 13 year history with Abby.

One of the best pieces of advice that we'd ever received was from a physician in the NICU where Abby was taken after she was born. After we'd peppered him with question after question about what the plan was for our daughter, he quietly said, "Abby will let us know what to do next." I remember thinking that was ridiculous. We were at a world renowned hospital. They should have a plan. But I watched, and sure enough, Abby led them. They knew just how to listen and she let them know exactly what she needed.

Abby has never wavered on that. If she needs (or wants) something, she will let you know.  Along with that, Abby has a radiant joy that impacts those she come across. She has a stubbornness that won't quit, but a spirit of empathy that reaches out to those around her.

So, as we head into this new frontier, as we step onto the pavement of "the teen years", I will remind myself to listen better to her, because even though I may not know all the answers to the questions that are flooding my brain, I do know Abby. And, if I look back I can clearly see that any road traveled with Abby is bound to be filled with joy.

Prenatal Testing

It has been quite a while since my last post. Life continues to be all kinds of crazy and days have a way of giving way to the next. Soon we find ourselves with a school year finished and running to catch up with all the things we had planned for summer. Hopefully, I will fill the blog soon with some of the wonderfully fun things we've already done, but for now, I want to address something that is heavy on my heart: prenatal testing.

If my Facebook newsfeed is anything to go by, this is a bit of hot topic right now. From what I understand there is a new test referred to as the NIPT (Noninvasive Prenatal Test) that is done after 10 weeks. A blood sample is taken from the mother. From that sample doctors can separate the mother's DNA from the child's. Once the child's DNA is identified, they can check for genetic "abnormalities", the most common being Down syndrome. Some in the medical community are lauding this advance in technology. After all, in the past, if a parent wanted a definitive prenatal diagnosis of Down syndrome, they would have to do amniocentesis, which ran the risk of harming the baby. Personally, I have no issue with this new test. What I do have a questions about is what happens after the test results are presented to parents.

For too long I believe that many, including some in the medical profession, have had a skewed view of what living life with Down syndrome means - for both the parent and the child. Too many, out of ignorance, paint a dreary picture of hardships and struggles. Far too often abortion is suggested as a better option, as if to say, "To save everyone some pain and hardship, just clear the slate and try again. It will be better for everyone." Now, I ask you parents out there, how many of you have gotten through even the first year with your "typical" child and not experienced hardships and struggles? I would wager that the number is pretty low - because parenting is hard, no matter what kind of child you have. I once told a friend that I had an advantage, I found out right at the beginning of my child's life that I don't have control over her future. It usually takes most parents about 18 to 20 years to come to that realization.

One of the leading arguments in support of aborting children with Down syndrome (thank you Richard Dawkins) is that people with Down syndrome don't "contribute" to society. What does that even mean? I don't ask that flippantly, but I truly would like to know what he means by that. Does he mean that they won't make a huge salary? Does he mean they won't pay taxes? Does he mean that they won't make the world a better place? If these are his arguments, I could easily find examples to refute them. How can we possibly tell a person's potential by simply looking at their DNA? How can you speculate on someone's ability to make a difference, or "contribute", to our society and culture by only looking at their genetic coding? The answer is: You can't.

I think that it simply boils down to fear. We seem to fear what is different, to not trust it, to call it things like "abnormal" and "disabled". The message is clear: It is wrong to be different. The truth is we are heading down a very slippery slope. What will happen when a genetic marker is found for autism? for cancer? for schizophrenia? for addiction? Will parents be handed information on abortion and told that their lives would be too hard - to clean the slate and start over?

So that brings me back to my original question when it comes to this kind of testing. What happens when the results are presented to parents? Are they simply told about their option to abort? Are they presented with words like "abnormality" and "disability"? Or, are they also given information about what life is like with a child with Down syndrome? Are they invited to meet a family and gain an experienced parent's perspective? Are they able to spend time with a person with Down syndrome? Are they told of the many resources available to them? Are they told that their child will be more like them than not?

My prayer is that they are given both sides of the story, because from my perspective, Abby's story is one of a million out there contributing to making this world a much better place.

Lessons

It has been quite a long time since I last posted. I've thought about it, but nothing seemed significant enough to post, or the times when I would mentally begin composing something, it always ended up  sounding too whiney. Today was different. Today Abby taught me three important lessons and, considering what has been happening in our world, I thought everyone could use a few reminders that joy and kindness still abound.

Lesson #1: A new day is exciting, so begin each day with anticipation.

This morning I woke up with a hacking cough. The cold that had been brewing had finally settled in my chest - and I was miserable. Even though I hate missing school, I called a sub and settled in to spend the day resting. Now, usually I'm the first one to leave the house in the morning and dad has the task of getting Abby on the bus. This morning I assured Jason, that even with my cough, I could handle it. Abby was ready to go in no time at all and as we walked outside she said, "Whew! It's cold! Let's get in the car!" I told her that was a great idea. We climbed into the car and I fired up the heater as she, with her Miss Piggy puppet on her hand, sang and danced to the music. I watched her and began to think, What if I started each day with the enthusiasm that Abby does? She was just so happy to be heading to school with Miss Piggy - such a simple thing. Her excitement escalated when she saw the bus pull up. She let out a whoop and yelled, "My bus is here!"

Once she was out of the car she danced the whole way down the driveway, singing about how excited she was to be going to school. She greeted her bus driver with an exuberant "Good morning!" and I watched Ms. Cathy's smile widen. Abby was bubbling over with joy and those around her couldn't help but be affected.

Lesson #2: Kindness is recognized and appreciated.

Monday night Abby had her school Christmas program. She was totally geeked! In fact, that morning, when she woke up, she immediately insisted that the program should come first in her day, "and then school."

She ended up doing a great job singing with her classmates. There was one song though that had me laughing. Some of the kids were wearing a garland "necklace" and there was one little guy standing in front of Abby who kept pushing his back so it fell down his back, instead of his front. Abby, in an effort to help him, kept readjusting it so that it would lay right. I watched her time and again arrange it and "pat" it into place, just to see him push it back and start the game all over. I couldn't help but think about what a little mommy she was being, and that the little boy had the patience of a saint. Eventually she just gave up.

This afternoon when I went to pick Abby up from school, a woman stopped me. "Are you Abby's mom?" she asked. At my assurance that I was she introduced herself. She told me that her son was the little guy that Abby was helping throughout the concert. She had been watching from her seat hoping that her son, who she assured me was short on patience, wouldn't turn around and wallop the sweet little girl trying to help him out. After the concert she'd talked with her son and he'd told her very frankly, "Mom, I was the one playing with it, she was trying to help me out." She went on to tell me that as they were saying their nightly prayers he mentioned how "sweet" Abby was, and then promptly covered his head with his blankets, as if he were embarrassed. She couldn't get over how very sweet the whole thing was. 

The funny thing was, while it was happening I was hoping his parents weren't irritated that the kid behind him wouldn't leave him alone. That couldn't have been farther from the truth. In the end it became a chance for two parents to witness the tenderness of their children. I was reminded once again, how Abby's innate compassion allows her to spread joy to others by simple acts of kindness.

Lesson #3: Let others see the joy in you.

My last lesson came at dance class tonight. It has been a long few weeks with Christmas preparations and such, and by the time we got to dance I think we were both a bit spent. Watching through the glass partition, I saw Abby separate herself from the class and plop down in front of the mirror. She proceeded to cover her face and take the posture of "I don't wanna," which we see from time to time. Instead of walking in there for a pep talk, I quietly asked the teacher if I could just sit inside the studio and watch. The minute I plopped down against the wall, my little performer perked right up and headed happily back to her spot. She now had an audience and all was right with the world.

The best part for me was not that she was participating. No, the best part for me was that I had a front row seat to her joy. She radiated it. As the class did The Hokey Pokey and The Chicken Dance Abby simply bubbled over with happiness, and as soon as Mrs. Katie turned on YMCA, she literally shook with excitement. She turned to me and said, "Mom! Mom! YMCA! Y-M-C-A!!!" I can't remember the last time I was that excited about anything, let alone a song. As she was dancing I was lucky enough to snap a picture at just the right moment - catching all that happiness. That picture is so essentially Abby, and was the perfect final lesson for the day. There is so much to be joyful about (even if it's just a favorite song), so why not let it show?


Tonight, as we were getting ready for bed, Abby said, "Mom, I'm so excited about tomorrow!", which is something she says nearly every night. I did what was expected and asked, "Why?", but this time as she happily said, "I have school tomorrow!" I let that sink in a bit. Abby is genuinely excited because she gets to do it all again tomorrow.

Abby is a gift in many ways - to many people. I'm thankful that today I took the time to really see her joy and hopefully learn a few lessons of my own.

Thinking About Thinking...

This morning I got thinking about thinking. I know that's a confusing way to start, but stay with me; I have a point.

This morning Abby got up early, and as she has never been an "I'm-going-to-quietly-hangout-while-mom-and-dad-sleep" kind of a kid, so did I. But today, instead of wanting to go downstairs to start our day, Abby wanted to hang out in her room listening to music and playing with her Barbies.

"Hang on Abby, let's do a quick finger poke," I said. I had to make sure that her sugar wasn't too low and that it would be safe for her to play for a bit before she ate. As I was getting everything ready for the finger poke, the grumbling started in my head. I began thinking about how crummy it was that the poor kid couldn't just play in her room without me having to squeeze blood out of one of her little fingers. Stupid diabetes.

My grumbling was made worse when she started asking, "Is it a good number? It's a good number? C'mon, good number, good number." That's when I really started to feel bad - for both of us. She had to be sick of all of this stuff she has to go through on a daily basis - I know that I am. As will often happen, my focus shifted to me. I'm so tired of thinking about her medicine....I'm so sick of having to think about what she's eating....I'm so weary of figuring carb to insulin ratios....I'm so tired of thinking....

By now Abby was happily singing "Hungry Like the Wolf" and playing with her dolls, but I continued to grumble. I mentally complained as I took the dog out, as I got my coffee ready, and as I trudged upstairs to get ready for church.

That's when I really got thinking about thinking - or more specifically, all the thinking that special needs parents and parents with sick children have to do. And how we must have super brains from all the exercise they get. Here's a glimpse of the things we think about:

• Our Kid's Food: With Abby's diabetes I have to constantly be thinking about what she is eating, when she will eat again, and how much insulin she needs. I know that is unique, but even before her diagnosis there were a few dietary issues. I know plenty of other parents who are food conscience with their special kiddos. They have to think about feeding schedules, gluten free food, dairy free food, or how they will puree their child's meal. Most of this isn't terrible, but it does make things harder. Going out to eat or to the movies are things we need to think a bit more about than others. It is one more thing that makes life a little harder than most.

• Social Situations: I for one think a lot about these. I play and replay scenarios in my head. How will I get her there on time? How will I get her to leave once we are there? Will there be any of her "pitfalls" along the way? Over the years I've learned to over-prepare myself and Abby for some of her triggers, but there are still times when I am completely taken by surprise by her behavior - both good and bad. When your child has challenges, birthday parties, playdates, and even trips to the grocery store are things you need to think through. Sometimes I feel exhausted even before we've left the house.

• Doctor's Appointments: I swear sometimes I feel like a walking date book. (Maybe that's the reason I can't remember birthdays.) In addition to the normal kid stuff like picture day, dance class, and school activities, I need to think ahead about the various specialists Abby needs to see. We also keep a close eye on her health in general and will often schedule quick trips to the pediatrician, since a "routine" bug can be a major problem for her. Sometimes I catch myself talking out loud to myself as I run through the things coming up on her schedule. Lumped into that is the mental tally we keep of her medicines and supplies. Sometimes I feel like we are on the phone every other week to the pharmacy to renew one thing or another.

These are only some of the things I know that I think about. There are many others for other parents out there - things like finding the right fit to their child's clothing, so they aren't distracted or irritated by tags or a too tight fit; things like making sure the school and teachers are given a heads-up when their child has had a difficult start to the day, knowing that it will take an extra measure of time and patience for them to reset; thinking about how they are going to sneak in some time with their special kiddo's siblings, so they don't feel neglected; and many more.

It was half way through my shower that a little voice in my head said, Elizabeth, there are far too many that have it worse than you - so knock it off!

I began thinking about the many parents out there who are thinking about much weightier things than having to take a morning blood sugar reading. I thought about the Carr family who found out this past week that their three-year old son has an inoperable brain tumor and are praying for a miracle, or our little friend Audrey, who has had more operations than I could count in her short little life. There are so many parents out there who have so much to think about, and I applaud them all.

Yes, I get weary from time to time, but I really have nothing to complain about. Maybe you know of someone who has a little extra to think about when it comes to their kids, and maybe you could add them to your list of things that you think and pray about each day. I know they would appreciate it - just think of it as exercising your own brain muscle!

Our Favorite Age

It seems like as the years go on and Abby continues to grow and mature, one phrase keeps coming up between Jason and myself - "This is my new favorite age." It may sound hokey, but she just keeps getting better and better. The other night the phrase came up again in our conversations about Abby and I had to agree with Jason, this really is a fun time with her. Here are a few reasons why this time is my new favorite.

1. She still wants to be with me.

I have to admit that there are days when this desire to stay with mom 24/7 wears a bit thin, days when I would love to take a shower without having to compose an elaborate story for the kiddo sitting on the stool mere inches away from the shower curtain, but then I remind myself that this may not always be the case. She may not always climb up on my lap, look me in the eye, and tell me how much she missed me while I was gone. There may not come a time when she wants me to read to her, or play with her, or simply watch her dance. There may come a time when the words, "But Mom, I need you!" don't cross her lips. I've seen glimpses of that day when I take her to a friend's house and she turns to me and says, "Now go, Mom." For now though, those times are few and far between. For now she still wants me around and involved - and I will savor that.

2. She is hilarious.

It could be as simple as the outfit she chooses to wear or the phrases that pop out of her mouth. For example, yesterday I looked up to see Abby gathering things together because she was pretending to go to school. She had her backpack on and her diabetic bag slung over her shoulder, both things that she got used to hauling to school, but she was also wearing her bathing suit (just because) and her pink cowboy hat. She thought she looked fabulous - and she did! Today, while she romped around in her pink leotard and blue skirt, she happened to put on my sunglasses. She sashayed back and forth in front of me. Suddenly she stopped, posed, lowered the sunglasses, and said, "Hey, Sweetie!" How do you not laugh at that? 

3. She loves to help.

Abby is in her glory when she has a task to do. Need your table set? Have some silverware to put away? Need some dusting done? Abby is your gal. She loves having a purpose and doing it "by myself!" My challenge is finding enough stuff for her to do. Like all of us she likes to feel she is contributing, and I love that!

4. She has an imagination that won't quit.

When Abby is in imagination mode she goes all in. Let me give you a few examples. Our car is not a car to Abby, instead it is a plane and I am a pilot. She isn't satisfied until I go through my whole speech either. It usually goes something like this, "Welcome to Valente airlines, flight 731, service from home to music class. Our flight time will be approximately 15 minutes, with a slight layover at Starbucks. Please sit back and relax and enjoy your flight." I have to give the whole speech with my had covering my mouth so it sounds like it is coming through a P.A. system. The whole time we are driving she refers to me as "pilot" and enjoys asking me questions. 

At mealtimes our dining room becomes a restaurant and I am the waiter, or "chef lady". Her bed is sometimes a boat and her floor a choppy sea. Our living room is often an auditorium and we are the audience for her many performances. In short, Abby is never bored, her mind is far to busy for that.

5. Her sweetness slays me.

Last week Abby got to hold her first baby. She fell in love
 with William right away.

It is not uncommon for Abby to tell me she loves me and it is usually at unexpected times, like while we are driving down the road, or in the middle of breakfast. She also has an incredibly tender heart. She will immediately reach out to anyone who is sad or hurting, wanting to offer comfort. And if there is a baby around....well, Abby is right there wanting to offer hugs and kisses, and telling them how sweet they are. She has so much love and she isn't shy about sharing it. 

I'm sure I could come up with many more examples of why this age is my favorite, but these are my top five. If history is anything to go by Abby will continue to get better and better as she gets older, but for now we are thoroughly enjoying our lovely little lady.

Abby got a new do yesterday. She was a champ and loves her short hair.

The Happy Pirate

Did you know that joy was contagious? It is - the proof was made clear with this morning's outing.

We were running low on staple items at the homestead, so I knew that I would have to be heading to the grocery store soon. This is usually not something that I look forward to. When I bring Abby it nearly always involves a bribe, so I almost went out late last night while she was in bed. Almost.

Since that didn't happen I knew that this morning was the time to go, and why not get it out of the way early? So, as I got ready upstairs, Abby got ready downstairs. I came down to find her decked out in her pirate costume, complete with sword and wild hair. "Mom, I'm a pirate!" she proudly exclaimed. I responded with, "Abby, you can't wear...." Abby knew what I was about to say, and started to protest. That's when I stopped. Why not? Why can't she wear her pirate outfit and carry her sword throughout the grocery store? Who would it hurt? So, I changed my tune and a happy pirate and I headed out to the store. Along the way Abby informed me that our car was her ship and that we needed to sing pirate songs. So we sang a few, "Yo, Ho, Ho's" as we drove.

By the time we'd arrived I'd given up the idea that bringing a pirate to the store was a bad idea, in fact, I was looking forward to seeing how people would react. I have to say that the whole time we were there Abby had a blast. She followed right behind me dancing jigs and singing a made-up song that went something like this, "I am a pirate! I am a pirate! Mom is mommy-Hook! I am a pirate! Ahoy, Matey!" She did try to capture a few little boys in the World Foods' aisle, but after a quick discussion about proper sword etiquette, she carried on without trying to lock anyone else up.

I tooled along filling up our cart, and watched the smiles she left in her wake. Some people would just softly smile to themselves when they saw her, others would comment on how they liked her outfit. One gentleman even stopped us to talk about about how much he missed his own children being young, and how his grandson loved pirates as well.

Abby was having a ball, and spreading joy so effortlessly - simply by being herself. This shopping trip could have gone in a completely different direction if I had insisted she not wear her costume and put on something "presentable" instead. I know exactly how that shopping trip would have gone because lately she and I have been having more battles over little things. It makes me sad to think that some of the reason for that is because I am not letting her express herself. Today was a good reminder that sometimes I need to step back and let Abby be Abby - because good things are bound to happen when I do.

Off to capture some pirate booty!

Luckily the aisles were pretty empty, giving her plenty of room to groove.

Juice boxes everywhere should fear the Dread Pirate Abby!

Day One

Well, today was day one of summer vacation and I'm happy to say that we hit the ground running! We have big plans to keep busy this summer and not lose any of the excellent learning Abby has gained this year. I have to say though that by 1 p.m. I was instituting "rest time" - not for Abby, but for me. It didn't take long for her to wear me out, and Zeke was there right along with me.

It's hard to see here, but she's getting some pretty good
height on her jump!

We began our day with a walk in the park. We have a lovely park pretty close to us and the exercise will do all of us good. So we buckled Zeke into his harness, tied our tennis shoes, and were off. I have to say, it was a great way to start the day. The scenery was beautiful as we passed by a pond filled with cattails and walked across the bridge through the woods. The best part though was watching Abby as she greeted everyone we passed. I love watching her hand out happy hellos.

Next, we came home to get ready for some errands. First up was heading to Mom's school to pick up some math papers. I've decided that everyday we will do some reading, writing, and math. The first grade teacher at my school generously offered her files to me, and so today we went to pick through them to get our daily math lessons. I also got a lesson in compromise. Abby was so good while I gathered her work that she convinced me she deserved some time on the playground.

Twirly slides are only second best to the swings.

After the playground it was off to the library. Yes, today was a big day; Abby signed up for her very own library card. I have to say that even I was impressed with the beautiful new kids' section in the recently renovated library. Abby immediately sat down to play at the computer, while I scoured the stacks for some of her favorite book characters. One of the best parts was that she was able to check out her own books. Pretty cool, huh?

Scanning her very own card

Checking out her own books

Finally, we were on our way home, but our planned day was not over yet. After lunch we had "carpet time" and enjoyed a fun tale about a little dog that dreamed big. Zeke enjoyed that book.

Next, we had math time and reading group. Our book this week was about emotions and what faces tell us about how people are feeling. It was interesting (but not surprising) that Abby did not want to talk about, or emulate, any of the negative faces. She was thrilled to show me "happy", "excited", and "sleepy", but wanted nothing to do with "sad", "mad", or "shy". When I asked her to draw her favorite face she chose "happy", of course.

For writing this summer I'm going to have Abby keep a journal detailing all the things we do each day. She also needs to practice putting events in beginning, middle, and end order. So, we ended our lessons today by writing about our morning. I wrote the sentences and Abby provided the illustrations. Then she put the three pages in the right order.

I got two eyes for this one. Abby told me she only needed one.

Apparently, today my desk needed to be green.

Here she drew the stacks with books. She informed me that the orange
books were "Daddy's books".

It was a fun morning mainly because she continues to impress me with how much she learns and her desire to learn more. I'm realizing that my challenge may not be getting her to continue to work this summer, but finding enough work for her to do! That, my friends, is a great problem to have, wouldn't you say?

Friends

Friends have been on my mind lately, namely Abby's friends. Abby is the quintessential people person and her friends are incredibly important to her. She loves playing with other kids and takes every opportunity to do so. We have a core group of friends that Abby has grown up with and I have so enjoyed seeing them play together throughout the years. Even when they fight with each other, I find myself smiling because these friends are the closest things to siblings she has.

In the last year I've noticed something though. The crazy kid parties of the past have gotten a bit quieter as the kids' interest shifts from things like dolls and dress-up to video games and friendship bracelets. All of the kids are getting older and more mature, and I love to watch that as well. The thing is, Abby is still very much interested in those dolls and ball gowns. Earlier this week I was feeling a bit down thinking about how there may come a day when Abby's friends' interests have gone beyond her own, and that day may be sooner, rather than later. My fear was that her friends would leave Abby behind in their race to grow up. Then a couple of things happened, and both had to do with dance.

Since September we've had Abby in a tap/jazz class. To say that she loves it is a bit of an understatement. She will wake up on a Monday and ask right away, "Dance today?", and I have to tell her that it isn't for another couple of days. It has never been a problem to get her moving on "Dance Day", unless it's to get her going once class is over and we have to go home. The tights, leotard, shoes, and music are right up her ally. She also loves to go see "her girls" - the term she uses for the other girls in the class. When she started the class she didn't know any of them, and they didn't know her. Those wonderful girls embraced her wholeheartedly and welcomed Abby into their dance crew beautifully. They encourage her, they miss her when she isn't there, pray for her when she's sick, and  they help her stay focused when she lets the music move her a bit too enthusiastically. That class is wonderful.

Wednesday was Abby's last class until Fall and I was sad to hear that some of the girls from the class would be moving on to the more advanced class next year. I think that the office manager of the studio could see my disappointment because she laughed and said, "Abby will do great! It won't be a problem for her to be with new girls. You know, because she has such a hard time making friends." The last bit was heavy with sarcasm and had me laughing too, because making friends has never been one of Abby's struggles. This thought stayed with me this week and was driven home more poignantly today.

Today we had dress rehearsal for tomorrow's dance recital. Abby was thrilled to be able to get her costume on, but even more so that Mom was letting her wear eyeshadow and lipstick! As soon as we walked through the door of the auditorium I heard a voice call out, "Abby!" I looked up to see a beautiful ballerina trotting toward us in order to give Abby a big hug. Abby was then quickly surrounded by about four other girls who were waiting in a line to practice their dance. You see, some of the girls in Abby's class also take ballet and they were so happy to see her that they made a point to greet her. Abby was thrilled to see them as well and couldn't take her eyes off the yards of blue tulle that floated around them. My heart swelled as we went to find a seat and watch her friends dance.

I continued to watch Abby as she ooh'd and ahh'd over all of the costumes and girls that walked around the auditorium. She told people how beautiful they looked and I watched the girls and their mothers stop and revel in her praise. Eventually, she made her way to the front row of seats and clapped and cheered loudly as each class finished their dances. After her turn on the stage she took time to photo bomb a few pictures of a group of older girls she'd never met. It was those same girls that moments later involved Abby in a game of Ring Around the Rosie - a game that I suppose was purely for Abby's benefit. They did get a bit concerned when she followed them to the wings of the stage, but I assured them that I wouldn't let her join them on stage.

Today drove home the fact that I have no need to worry about Abby not having friends. She has some pretty spectacular friends already, but she also has an amazing ability to draw people to her. Abby will never be without friends because she genuinely loves people, and others see and respond to that. Once again Abby proved to me that my worries are needless. It isn't the first time....and I'm sure it won't be the last.

Rather confident, wouldn't you say?

Jazz hands!!

Abby loves tying shoes. She is still learning how, but she likes to
be helpful too. One nice girl in her class let Abby "start" tying her
shoes today. Have I mentioned how much I love that group of girls?

Mom's Learning Curve

Abby has a wonderful temperament. She is as sweet and loving as they come...she is also stubborn and independent. We often hear glowing reports from her teachers about how she has such a positive influence on the other students and how she is an absolute "angel". I agree, she is a pretty spectacular kid, but lately we've been seeing less and less of that "angel" at home. Instead, we've been getting the demanding general who seems bent on perfecting her tantrum throwing abilities. She always redeemed herself by bedtime, but the path to get to that point has been rather rocky.

We began asking questions like, What is going on with her? and Could it be hormones? It was one question that Jason asked though, that really got me thinking - Are we too hard on her? I mentally reviewed our days and was convicted. I was spending far too much time and energy bossing that poor kid around. I could hear myself saying things like:

• Abby, you can show me the dance in an minute. Come here so we can wash your hands.
• Abby, it's time to come inside, you need to eat.
• We need to do your finger poke, come and sit down.
• Abby, no...
• Abby, stop...
• Abby, come here!

I'd become a horrible nag. Frankly, I couldn't blame her for being incredibly angry and frustrated. Now I wasn't "on" her all the time, we really do have great fun around here, but the fact of the matter was, I wasn't giving her the room she needed to feel independent and valued. I spend my days managing a classroom of kids and Abby had become one more for me to manage. 

So, the last two days I've been experimenting. Instead of barking out orders I've backed off and given her choices. I've replaced commands with phrases like:

• Abby, let me know when you are ready to wash your hands.
• How about we come outside after dinner to play?
• Let me know when you are ready for your finger poke.
• I'm going to head upstairs, you are welcome to come up too.
• Hey Abby? Could you help me....?

Let me tell you how the last two days have gone: 

• We've had no tantrums or tears. 
• Abby has not fought coming in the house after school, getting her hands washed, going potty, or getting a bath - all tasks that routinely would spark arguments. 
• Abby has cleaned up her toys (without prompting), took the time to straighten ups things around the living room, and helped me empty the dishwasher - all with a smile on her face. 
• There's been no yelling, frustration, or stress. 
• There has been more laughing, fun, and smiles. 
• And most importantly, I've seen with new eyes what a lovely young lady Abby is becoming. 

I'd spent so much time and energy trying to figure out what Abby's problem was, that I failed to see that I should have been looking a bit closer to home. It is hard for this mom to give up control, but I'm looking forward to a summer of practicing turing over more and more responsibility to Abby and watching her rise to the challenge - because, as you know, she's pretty spectacular.

Are you surprised she picked out these sunglasses?
Me neither.

I love her smiling eyes.

Determined. Nothing will hold her back.

Lovely.

An Anniversary

As with everyone I have certain days that are etched in my mind...the day we got married, Abby's birthday, the day we finally got to bring Abby home...these are all important anniversaries that we celebrate. They mark wonderful things. They mark life changes. They should be celebrated.

Today marks another anniversary, one that is bittersweet because I can't say that it marks a wonderful life change.....but it should be celebrated none-the-less.

Today marks the first anniversary of Abby's diagnosis of type 1 diabetes. Just like the other pivotal times in my life there are vivid memories of that day. I remember calling her peditricitan because I'd taken note of her excessive thirst the night before. I remember them telling me that the doctor would want to see her, as soon as possible. I remember arriving at her school and crying all over her teacher because I was so worried it could be diabetes. I remember her first finger poke. I remember the doctor telling us that there was only one thing this all could be. I remember wondering if her new diagnosis was something I had caused. In the span of a few seconds our life turned sharply, and we would have to learn to adjust.

And that's just what we've done.

Although I don't celebrate the fact that Abby has to deal with this disease, I do celebrate the grace with which she does it. Abby takes the 4 shots, and the numerous finger pokes that go along with them, as if they were nothing. She doesn't flinch or complain, in fact most times she will thank us when we are done. She has also adjusted so well to the fact that she can't have some of the treats that other kids can, or eat whenever she feels like it, like so many of us do. She even tolerates the times when I have to force her to eat something, because I know it can be dangerous if she doesn't. As I think back to those first few shots and pokes I can't believe how amazingly well she has adjusted to all of this. Her strength of spirit continues to astound me - that alone is enough to celebrate.

I also celebrate the job Jason and I have done managing all that goes into having a child with type 1 diabetes. The number of calculations we've done this year blows my mind. I've lost count of the times I've figured up carb counts, carb to insulin ratios, and dosages. I've learned the signs of Abby's highs and lows, and how to treat both. In essence we have learned to become Abby's pancreas - and I'm proud of us.

I celebrate the army of doctors and caregivers that have supported us along the way. From her diabetes doctor who invited us to call him at home whenever we had a question, to the nurses at the diabetes center who had the patience with my near daily calls in the beginning. I celebrate the teachers, secretary, and principal at Abby's school who so fearlessly learned how to check her sugar and give her shots each day before lunch, and who keep an eagle on her to make sure she is right on target with her diet and activity. I can honestly say that we would not have had such a successful year without them. They are to be applauded.

Finally, I celebrate the fact that no matter how draining, tiring, and inconvenient diabetes is, it is manageable. Each day Abby has the medicine she needs to live a healthy and happy life. I can't be more thankful for that.

I look forward to a time when a cure will be found, but until then we will celebrate each victory along the way.

So, happy anniversary, Abby. We made it through our first year, kiddo, and I'm more in awe of you than ever.

There isn't much that slows this kid down!

What lessons can I learn from Abby? First, not to dwell on the negative. Even when she isn't feeling great she can find something to smile about - even if it's just a bowl of ice cream.

From A to Z

We have always been dog people. There have been very few years that we've been married that we didn't have a dog. Over the years we've had several sad episodes when we've had to say good-bye to a couple of wonderful family pets, but despite the pain that brings, we've always felt that our family isn't complete without a dog.

A while ago, before we realized just how sick Bruiser was, we'd talked about getting another dog. We'd had large dogs for quite some time, and we thought having a smaller dog might be fun. We were certain Abby would love it, and convinced that Bruiser would enjoy the company as well. Jason did his homework and found a wonderful breeder of Australian Terriers. These seemed to be the perfect fit for us, and once we contacted Theresa we knew we were on the right track, so we officially added our names to their waiting list.

Before we knew it, Theresa contacted us to let us know that two litters were to be born, and we would be getting one of those puppies. We were thrilled - to say the least. Abby kept a close eye on the puppy cam and made sure to tell anyone that would listen about her new puppy - her "little" puppy.

Sadly, Bruiser was not to meet our newest addition. We have missed him greatly in the nearly two months that he has been gone. The house seemed emptier and we were sadder, but by the time he was gone we knew which one of those little puppies would be a part of our family, and this helped ease the pain. Zeke had been chosen for us.

We'd decided that when the time came to go get Zeke, Abby needed to be a part of that. So, not only would Abby be getting a puppy, but she would be taking her first flight on an airplane....and that brings us to this weekend. We had no idea how she would do on a plane. It isn't easy for Abby to sit still and be quiet, especially when she is surrounded by so many people that she hasn't met yet. I had visions of her trying to visit with everyone on the plane. She also has some trouble with loud noises and the unknown. We couldn't do anything about her outgoing personality, but we could prepare her as best as possible. So, we set about practicing. We talked though what would happen and even walked through pretend metal detectors in order to get to our pretend plane. Abby was ready, but I was still nervous.



Abby is fairly bursting with excitement.

I shouldn't have been. Abby was a pro, and so incredibly excited about getting her puppy. I cannot tell you how proud we were of that little girl. Soon enough we were pulling up to Theresa's house, moments away from meeting Zeke for the first time. I wasn't prepared for the tears that clogged my throat as I watched Abby and Zeke meet face to face. Abby was in heaven, in the midst of all of those wonderfully happy dogs, and incredibly nice people. I cannot say enough good about Theresa and her family. Not only do they responsibly breed excellent dogs, but they do it with grace, style, and hospitality that is matched by few. They welcomed us into their home and treated us like honored guests.

Abby continued to do wonderfully, but before long the travel and schedule changes got the best of her. She was tired and needed rest. After an early bedtime she was up and ready to go for round two today. Knowing that Abby was now a pro, we were curious to see how Zeke would handle the airplane.

By the time we landed it was clear, we had a couple of pretty awesome kiddos. Abby was once again  stellar when it came to airplane etiquette, and Zeke....well, it wasn't until a surprised yip came from the dog carrier by our feet upon landing that anyone around us even knew that we had a dog with us. Yes, they both did wonderfully.

We got home from our whirlwind trip and had fun getting back to normal, and playing with the newest member of the gang. Tonight, as Zeke lay cuddled on my lap I couldn't help but think he will fit in here just fine, and that once again our family feels complete. As one person commented on Facebook, Abby and Zeke have us covered, from A to Z.

Abby dreaming of future flights.

These two were fast friends.

All smiles and ready to head home!

Sneaking in a quick nibble.

So much excitement wears a poor pup out.

Hope

It's been a while between posts, and although I've been quiet here, things have not been quiet around the Valente household. Life has a way of chugging right along, and quite frankly lately I feel like I'm running to keep up. I hadn't planned on writing a post tonight, but something happened today that I just needed to share.

To begin I need to back up - about 8 and a half years. Within hours of Abby's birth she was flown to the University of Michigan hospital. Everyone there was pretty fantastic, but there are a few lovely people that stand out. One of these angels was Nurse Joanie. Joanie was the one that got Abby chugging her bottle like a pro, she was the one that stayed well past her shift one night in order to make sure Abby's IV got put in right, and she was the one that told us the night before Abby came home, "You need to go out and have a nice dinner, just the two of you. After all, you have the world's most expensive babysitter." In short, we loved Nurse Joanie.

This afternoon, while my students were working quietly at their desks, my phone made an interesting "chirp". I looked down to see that I had a message from Nurse Joanie. After school I took a peek at it and saw that she was referring me to the blog of a lovely family who is currently at the U of M. In fact she was directing me to one particular post.

As soon as I could I popped over to the post and got to reading. I could feel the lump in my throat getting bigger as I realized what was to come. See, a few years ago Abby was chosen to be part of a special project for the new children's hospital U of M was building. The project was called "The Walls of Hope". Photographs of children who had been in the NICU were taken by a wonderful photographer and were paired with photos of them when they were at the hospital. These beautiful pictures now line the walls of the NICU and are there in order to offer hope to those parents who are currently spending many agonizing hours there. I sat at my desk reading about this young family, who had gone through a difficult birth which resulted in one of their twins needing to stay in the NICU. After receiving the news that, along with numerous health concerns, their daughter also had Down syndrome, the mother talked about walking the halls of the hospital. I could so clearly remember being there, having the feeling that all of my "plans" for Abby had changed and I was faced with a future that was uncertain and not what I had expected.

Just as this frightened mother was wondering what her daughter's future might look like, she spied Abby's picture. She saw her gentle smile and the sunlight shinning through her hair as she played in a field of flowers. She talked about how Abby's picture gave her hope. And that's when I cried.

Seeing Abby, along with the obvious fact that this young mother's faith is strong, had helped her come to the realization that her daughter's future was destined to be different, but it could be so much more than she'd ever expected.

Once again today I was reminded how very precious Abby is. I was once again amazed, and humbled, by my own child. I will never know how far reaching an impact that little girl has had. I will never know the number of lives that she has made better, by simply being who she is. Tonight I sit in amazement at the Great God who's wisdom is far beyond any I could ever have, and I am thankful - very thankful indeed.

The Gentle Giant

Once upon a time, not that long ago, a puppy was born. He was a sweet puppy with great big paws and beautiful golden eyes. Despite the gentle glow in those eyes, his family looked at his mighty paws and christened him, "Bruiser", for they thought he would grow to be a giant, and indeed he did.

Bruiser grew and grew, as he lived with his first family, but he never lost his gentle spirit. Even though his brothers and sisters would often push him out of the way when it was time to eat, or pick on him in other ways, he didn't lose heart.

Before long his first family needed to move, and they couldn't keep Bruiser, so they looked far and wide for a family that would love their gentle giant. One day, as the cold winter winds blew, a family came to visit the dog. They brought with them a very special little girl, a little girl who loved dogs, big and small, and who needed a loving companion who was both tough and tender. The little girl was nervous at first, for Bruiser had a mighty bark, but soon she was laughing as he ran and played around her. The parents of the little girl saw just what they had been looking for, and so it came to pass that Bruiser would continue on with a new family.

From the moment Bruiser arrived, he was comfortable, almost as if he was always meant to be there. A great love blossomed between Bruiser and the family. He sought their attention and love, and joyfully played in their big green yard. He loved most though, that special little girl, who would shower him with affection. Each day he would wait anxiously while she was away, and then greet her joyfully when she arrived back home. He reveled in the times when she would throw her little arms around his neck and softly whisper, "I love you, Bruiser." Those were the times when his heart was the fullest.

The parents of the little girl would watch in amazement as the great dog would sit patiently as the little girl adorned him with silly hats and funny scarves, and they would laugh when the two of them would howl loudly, singing at the top of their lungs. They liked it best though when Bruiser would keep watch over his little girl, and guard her from strangers, or scary noises. They knew that he would defend their little girl at all costs.

And the family was happy.

Years passed and the little girl grew, and so did the bond between her and Bruiser. But far, far too soon the parents began to notice changes in their beloved dog. They noticed the once nimble animal limping when he walked, and his back becoming thinner. They noticed that he spent more time sleeping, and he became more fearful. It was the day that he cried out in pain that confirmed their fears. Their protector was very sick indeed. With heavy hearts they took him to the doctor, only to hear that he was in great pain, and they loved him far too much to let him stay that way. And so, it was his time to leave the family.

There is now an empty space in the house where those great paws used to romp and play. There is a heartbeat missing from the family, and because of this there is grief. They know the sadness will lessen with time, and eventually the special little girl will stop asking, "Where's Bruiser?", but he will never leave their hearts or their memories, for their Gentle Giant was special, and a soul such as his will always leave a lasting impression.

What We Did on Our Summer Vacation

One week. One week from today we will be running around, packing lunches and backpacks, hustling through breakfasts, and getting pictures by the "picture tree". One week from today Abby and I will be heading back to school.

We are both ready. I love the start of school, the new opportunities, the new plans and ideas, and all the new school supplies.  Every day for the last couple of weeks Abby has either asked, "School today?" or told me, "I'm so excited for school to start!" As much as we are both ready for some structure and socializing, I am incredibly sad to see the summer come to an end. It was a wonderful summer - the best yet, in fact. So, I thought I would answer that age old question, the one teachers all over the country ask their students the first week of school - here's what we did on our summer vacation.

Swimming Lessons

I swear, Abby would spend the whole day in water if she could. In order to avoid my panic every time she approaches more than three inches of water, we thought it prudent to enroll her in some swimming lessons. So, two days a week Abby and I trotted down to the local Y where she had the opportunity to learn and practice the basics. I think the only time she didn't have a smile on her face was when the class had to "sit on the wall" and wait for their individual turns to swim.

She was always the happiest when she was in
the water - a trait inherited from Daddy.

We also got to spend time out at the lake this summer.
It's a hard, but someone's got to do it!

Shopping

This may sound silly, but we did a ton of grocery shopping this summer - and that is kind of a big deal. It was though our trips to the grocery store that I was able to see just how much Abby has grown and matured. Gone are the days when she would run off to steal someone else's grocery cart, or when I needed to maintain an iron grip on her at all times. Imagine my amazement when I could push the cart and she would obediently trail behind (granted she was about 3 feet behind because she was so distracted by everything, but she was there), and she would even help out by putting things in the cart.

We always had to take a ride on "Sandy" once
a successful shopping trip was done. The incentive
for good behavior was well worth the penny.

Abby is convinced she is the one who magically
makes the doors close after we leave a store. We
always have to stop so she can close them 3 or 4 times - at least.

The Cottage

It had been quite a while since we'd been up to the family cottage, and so when Daddy took some vacation time, we headed north. It took Abby a couple of days to settle into a new place, but when she did we all had a wonderful time. Boat rides, swimming, and playing outside made the cottage a veritable haven for Abby.

Abby has a standing invitation at the neighbor's swing set.
Her squeals of delight could be heard across the lake, I'm sure.

Happy girl.

She couldn't wait to go swimming, and had
to have a "doo-rag" just like Nana!

Doctors Appointments

Well, you have to take the good with the bad, and we had both in this category. Let's start with the good. Abby had a follow up appointment with her diabetes doctor. He couldn't say enough about how well she is doing, in fact, he told us she had the best numbers of the day. I was so proud of all of us, and this kept me riding high for a while. We also had Abby's yearly check-up with the cardiologist. I have to admit I was dreading this one. They wanted to do an echo cardiogram, the one that is basically an ultrasound of your heart....the one that requires a dark room and holding still, neither of which are Abby's favorites. The last time they did one of these they had to knock her out. Thankfully the people at the children's hospital are wonderful and know just what to do to put a scared little girl at ease. Bless those doctors who had the patience to take Woody's EKG and Jesse's blood pressure. Because of them, Abby did fabulously, and came away with another wonderful report.

The patience of the doctors never cease to amaze me. This
super doctor even took the time to find a cuff that would fit
Jesse (sort of) and went through the whole process of taking her
blood pressure. There's a reason he is the only one who has ever
gotten Abby to do her blood pressure - and with a smile no less!

Unfortunately, not everything was great in the health department this summer. Abby ended up with a nasty case of the flu (which she shared with me, wasn't that nice of her?), and we ended up in the emergency room. Luckily it was a short stay, and she recovered quickly. Even though that's the last place I wanted to be, I was once again impressed with Abby's bravery; she got her IV like a pro.

You can see by her eyes how dehydrated she is here.
Even through it all, she could smile. What a trooper.

Playing & Visiting

Since summers are a bit of a "working holiday" for teachers, Abby did a lot of playing, both with buddies and on her own, when Mom had to get some work done for the classes I am taking, or when I needed to get into my classroom to get stuff done.

We also had some friends and family over, as well as got to go to visit them. This was so good for our little social butterfly.

If Mom was working....Abby needed to as well.

There was always time for being a princess.

She even gave some percussion lessons to this cutie.

The little cowgirl isn't always happy, but thankfully
those moments are few and far between.

We got to meet Grandma's new doggie - Lilly!

It took a bit, but eventually Abby was okay with her jumping up.
I couldn't help but laugh that Abby can boss around an 80+ pound
German Shepherd like nobody's business, but a 7 pound little dog would
send her running and scrambling for the couch.

So there it is in a nutshell - our wonderful summer. It will be greatly missed, but the memories are priceless!