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!