5 Things I Have Learned From Having A Child Who Is ‘Different’

Yesterday was World Down Syndrome Day (WDSD), a day globally recognized to raise awareness and celebrate individuals with Down syndrome. March 21st was chosen as the date to celebrate WDSD to represent the three copies of the 21st chromosome. This is a new holiday on our calendar. Two years ago, if you would have asked me why March 21st was a special day, I would have (jokingly) told you that it was special because it was an extension of my birthday the day before. As I sit here today, 3/21 carries such a deeper meaning for our family.

Last year on World Down Syndrome Day Harrison was only 9 weeks old, and he weighed 8 pounds.

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He was still so tiny and fragile. We had been in the hospital for 63 long days, and it seemed like no end was in sight. Once again, he was starting to take 75% of his feeds by mouth, but we had been there before, so I did not believe that trend would continue. Although I had purposed in my mind to fight against a G-button, I was almost certain that would soon be on the list of things to happen before we could even think about going home. Cardiology had rounded that morning, and still had no answers. Just three weeks before, we were waiting on a surgery date, then we were off the surgery list, and I felt like we were sitting in limbo going nowhere fast. We had an echo scheduled for the next day, but I was not optimistic.

I have vivid memories of sitting in room 17 of NICU Unit A on our first World Down Syndrome Day feeling lost and hopeless. That morning I cried out to God for something – a glimmer of hope. I was tired of feeling alone. God answered big. As the day went on, my feeds were flooded with pictures of our friends and family rockin’ their crazy or mismatched socks. I sat there all day completely blown away by the amount of love and support we received. It was a huge answer to prayer. The next day, we pulled Harrison’s NG tube and had a very positive echo. He continued to thrive on oral feeds, and just one week later were on our way home with a tiny 10 week old baby.

As I sit here today, I cannot imagine life without Harrison. Although we weren’t expecting that extra chromosome the day he was born, we have learned so much about ourselves, about love, about acceptance and equality, about the world, and about what is really important in life. I pray that we all can continue to celebrate these amazing individuals and their contributions to society: not just once a year on World Down Syndrome Day but every day.

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In that spirit, I would like to share with you some things that I have learned from Harrison:

5 THINGS I HAVE LEARNED FROM HAVING A CHILD WHO IS ‘DIFFERENT’

ALL PEOPLE MATTER
People are people. For some reason, society has decided that we can treat people differently based on their abilities, but let me tell you something…regardless of what label you want to slap on someone, they still have feelings. They can tell when you are being sincere vs when you are just doing a service. No one wants to be that ‘token friend’ or the mascot for your particular social circle because letting them tag along will get you the extra attention you want. Be genuine. Get to know people who are different than you. Differences can be scary, but I want to challenge you to put differences aside and see people. People matter. Every single person has something beautiful to contribute to this world.

DIFFERENCES MAKE THE WORLD A BETTER PLACE
There are people who see people with disabilities as a drain on social and economic resources, but because of our broadened circle I am now more convinced that people who we tend to label as ‘different’ or ‘less’ are actually making society more diverse, compassionate, and emotionally mature. A world in which we were all the same would be incredibly boring. When you take the time to get to know people who are different than you, I can guarantee that you will quickly realize that you have more in common than you thought. Your eyes will be opened to a different perspective, and differences will quickly become less scary.

HARRISON IS JUST A KID
Plain and simple. I remember being so afraid this time last year, wondering how we were going to be able to care for a child with different needs. I could just sit and laugh at myself now, because Harrison is a very ‘normal’ one year old (if that’s even a thing…I’m confident there is no ‘normal’ one year old). He eats, sleeps, and messes diapers just like anyone else. He loves to play, and will talk your ear off – especially if you talk back. He lets you know when he is mad or tired, and he will look at you straight-faced and continue to pull every single DVD off of the shelf even though you just scolded him for doing it thirty seconds before.

LIFE, NOT DOWN SYNDROME, IS HARD
Regardless of who you are, where you live, or your socioeconomic status – life is hard. The unexpected will happen. Period. All of my kids have thrown me plenty of curve balls. No one is entitled to a life free of challenges, so clinging to this dream of your perfect world will do nothing other than set you up for extreme disappointment. I have vivid memories of sitting in the NICU wondering why this happened to us, throwing myself a pity party because this wasn’t the life I had planned for myself…if I could go back to those moments, I would tell myself to just sit back and let God work. Turns out that a lot of the harder moments we have had in this past year have had little or nothing to do with Down syndrome. If anything, Down syndrome has been the blessing in disguise that has kept us afloat when I was sure we were sinking.

WE ARE NOT IN CONTROL
We had so many plans, so many visions of what our life would look like in 5, 10, 20, 50 years.  Careers, kids, college funds, grand kids, retirement funds, the whole shebang.  In one moment, gazing into Harrison’s almond-shaped eyes, most of those plans evaporated or changed drastically, and can I tell you something?  I wouldn’t have it any other way.  God has reminded us over and over again that he is in control of our lives, and that the story he’s writing is so much more beautiful than anything we could dream up on our own.  As difficult as it is sometimes, I’m learning not to worry about what the future looks like. Life will be what it is. I am just doing the best with what I have in the moment, and trying to sit back and enjoy the ride.

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Happy Birthday, Harrison!

I think it is pretty obvious that we have been absent from the blogging world for quite some time. At the beginning of October, we lost my father in law to a courageous and hard fought battle with cancer. I personally have felt emotions that I did not know existed. They have been deep and dark. I’m hoping to one day get to a place where I am able to share these feelings with the world, but I’m not quite at that point in the grieving process…

I do, however, want to get back to blogging about the rest of our lives. And there is no better day than today…

As I sit here in the early hours of Harrison’s 1st birthday, I can’t help but reflect on the last 365 days.

This last year has been one for the record books. It is still hard for me to effectively communicate heart.  I can get some words out, but I don’t think they paint a good picture of what’s deep inside.  Our family has experienced so much joy, and so much loss.  We’ve had moments where we felt like we were climbing back up the mountain, only to find ourselves plummeting deep down into the canyon.  Through it all God has been so incredibly faithful.

I was looking through pictures tonight, and I came across this one:

To most people, this may look like one of those accidental photos that have no meaning, but I remember snapping this picture to send to a friend asking how I was doing.  Although I sent it to her, I took it for me – to look back on in this moment and remember. It was 9:18 PM, on January 16th, 2017. The floor was covered in cars, and crayons, and probably more food crumbs than we could ever count. We had been at the hospital for about 8 hours already, without much progress at this point. Anxiousness was starting to set in. The kids were getting restless.  We were so ready to meet our sweet boy. We were so innocent.

Just 15 hours later, we met this little man for the first time.

Our world was rocked.

The next few months were nothing but a blur.

And I wouldn’t change one second of it for anything.

This last year has made us stronger.  I am so thankful.

Happy Birthday, Harrison!

Preemie clothes swallowed your tiny 4 pound self when you were born, and here you are today starting to fill out 9 month clothes nicely. Those clothes that once looked like pools of fabric draped over your little body look so tiny now.  You now weigh 18 pounds 7 ounces, and you’ve almost grown 10 inches this year! Three of the cutest teeth peek out with every smile, and I can see two more that are going to poke through your gums at any moment.

You are not crawling yet (although it won’t be long, I’m afraid), but that doesn’t keep you still. I don’t always know how you do it, but getting from one side of the room to the other is a breeze. Pulling up on things is starting to look easy, but we are working hard at correcting bad habits before they become a problem. “Da Da Da, Ba Ba Ba, and Ma Ma Ma” are now regular words in your vocabulary, and tonight you started making this silly little squeal. Dad and I were laughing as we sat in the floor playing with you tonight.

You LOVE to eat! Green beans and egg yolks are probably your favorite things right now.  Although you definitely prefer real food these days, you can chow down on a bottle, too! Clapping and playing patty cake are your favorite past times, but peek-a-boo or grabbing two toys and banging them together are quickly climbing the entertainment ladder as well.

Austin, Emma, and Nora are so in love with you, bubs! You are constantly getting attention from one or more of them. I often wonder if you will ever have to learn to do anything for yourself! Nora is constantly in your personal space, and is often knocking you over (accidentally, of course), or dragging you around. It’s a wonder we have made it this far without many injuries. I have a feeling that the two of you are going to get into a lot of trouble together as you guys grow.

You are incredible, and perfect. You are exactly what our family needed, and I could not be more thankful to God for giving you to us. Your smile lights up an entire room, never lose that gift or take it for granted. You have experienced so many “firsts” this year, and I cannot wait to see the “firsts” that this next year will hold. You are going to be a world changer, and your Daddy and I are so happy to have a front row seat.  We love you more than you know!!

Happy Birthday, buddy!

Holland Revisited

Our plans and dreams for Harrison’s future may look a little different on this side of his diagnosis, but one thing I have remembered is that he is still the same son that we were given from conception. God made him, perfectly, and he knit him together just as He saw fit. He knew exactly who Harrison would be from the very beginning.

As I was re-reading through the Holland poem yesterday in my post, I kept going back to one specific part that I don’t really agree with almost 9 months into our adventure. I think the text and it’s meaning are beautiful, but the ending seems a bit skewed. The author states that the pain of landing in Holland will never go away, but I just cannot see how that is true!

Did I grieve the son I had fashioned up in my mind? Yep. Sure did.

Do I still grieve that little boy? Not like I used too.

Holland is a beautiful place. The windmills are awesome. The tulips – you won’t believe how beautiful they are until you see them for yourself! The wooden shoes are fun and funky, and probably something I would have never picked out for myself!

…when in Holland…right?

But who in the world says we have to stay in Holland forever? We are on our way to Italy, dagnabbit! Yes, it will take a little longer to get there. It will require more effort. But we WILL get there!

I’m so thankful the the moms and dads that have gone before us, advocating for their children, shouting their value and worth from the roof tops. It is because of these men and women that the average life expectancy of a person with Down syndrome has jumped from 25 to 60 since 1983. Fifty years ago, parents were encouraged to send their babies born with Down syndrome to mental institutions. We now have more resources and early interventions available to us than I know what to do with.

From the bottom of my heart, “Thank you!”

💛The UPSIDE of Down syndrome💙

Down Syndrome Awareness Month

Mason Michael

Age: 8 months

Mesa, AZ

“The prenatal screening test indicated you very likely had Down syndrome. I had very little exposure to Down syndrome and my world crashed down around me. The doctor delivered the news very clinically. She never told me my heart would melt the moment I saw you. She never told me that you would be so resilient following heart surgery at 5 months. She never told me how overwhelmed with pride I would be each time you mastered a new skill that you fought so hard to learn. She never told me you would give the best kisses and snuggles. She never told me you were exactly what I needed! Thank you for reminding me what’s important in life. Thank you for helping me learn to have patience and for teaching me compassion and understanding. I absolutely love watching you grow and learn. I’m so glad you picked me to be your momma. My hope is that we can reach even one mommy struggling with a prenatal or birth diagnosis and help her to see how lucky she is.”

How can you look at that face and tell me Holland isn’t beautiful? – Brandi 💜

Holland

One of the most interesting things I have learned about Down syndrome is the fact that there are actually 3 different types: nondisjunction (Trisomy 21), mosaicism, and translocation.

Trisomy 21 is usually caused when a cell doesn’t divide properly. Nondisjunction occurs when a pair of chromosomes fails to separate in either the sperm or egg prior to or at conception. This results in an embryo with three copies of chromosome 21 instead of the usual two. As the baby develops, the extra chromosome is replicated in every cell of the body. This is the most common type of Down syndrome, and accounts for 95% of cases.

Mosaicism, or mosaic Down syndrome, is diagnosed when there is a mixture of two different types of cells discovered in the genetic karyotype. In this case, some cells contain the typical 46 chromosomes while others contain 47. Mosaicism is the least common form of Down syndrome. It accounts for only about 1% of cases.

Translocation accounts for about 4% of cases of Down syndrome. The cells of people with translocation have 46 chromosomes in all cells, but an additional copy (either full or partial) of chromosome 21 attaches to another chromosome, usually chromosome 14. Research has found that heredity is a factor in about one third of cases of translocation Down syndrome cases.

Just like their typical peers, every person with Down syndrome is born with a unique set of strengths, weaknesses, talents, and abilities. Down syndrome does not have a spectrum, you either have the extra chromosome or you don’t, however the abilities of each individual can vary greatly. It is impossible to predict how the extra genetic material will affect each individual, but one thing can be guaranteed: individuals with Down syndrome will bring so much joy and happiness to you life.

After we were transferred to Cook Children’s, some people shared a poem with us titled ‘Welcome to Holland.’ It depicts a picture of what it’s like when you learn that your child has extra needs.

Please take a moment to read what my new friend Ashley said about Holland, and Paige their “tour guide.”

💙 The UPSIDE of Down syndrome 💛

Paige Marie

7 months

Buffalo, N.Y.

Welcome to Holland by: Emily Perl Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Holland is a beautiful country and was our favorite place to visit, well before we had Paige. My father was born in Holland and we’ve always known of its beauty. Now we have our very own Holland tour guide! Paige, mommy and daddy and big sis Ellie love you so much! You bring so much joy and happiness to our family and everyone you meet!

Did You Know?

Did you know that 1 in 691 babies is born with Down syndrome? It is the most common chromosomal condition, and is represented across all races, ethnic groups, nationalities, and social classes? While the chance of having a baby with Down syndrome increases with age, the majority of babies with Down syndrome are born to mothers under the age of 35.

What causes Down syndrome?

Down syndrome occurs when a person has three copies of the 21st chromosome present, instead of the typical two, in all or some of the cells in the body. The extra copy of chromosome 21 affects the body’s chemistry, and alters the course of development. While this makes it a little more difficult for a person with Down syndrome to do certain things, and reach certain milestones, it does not make it impossible. Although people with Down syndrome generally have recognizable physical features, you should know that they are all individuals with unique personalities, interests, hobbies, and talents. They are more like their typical peers than they are different.

💛 The UPSIDE of Down syndrome 💙

Matthew Jason

Age: 4 months

Pittsburgh, PA

“ May 11, 2017 you made your entrance and within hours faces around me became worried. They said we suspect your baby has Down Syndrome and a heart defect. With those words my earth shattered. In my head my little boy was gone… but boy was I wrong! When you have a child with Down Syndrome they are still that precious perfect baby you were expecting just with a little EXTRA. I never knew my heart could love at the capacity it does now! At just 4 months old Matthew rolls, plays with his toys, laughs, and his smile is out of this world! Matthew has brought joy to so many people and gave us all a new compassion for all kinds of people. One very cool thing is when you have a child with DS you make friends from all over the world who are now like sisters and whom I will cherish for a lifetime ❤️ Children with Down Syndrome are a light in this world and if you take 5 minutes to look at a family walking this life you will realize what a wonderful life it is!”

Follow Matthews Journey at:

https://m.facebook.com/simplymatthew/

Thank you, Robert

Growing up, I had a friend with a younger brother who has Down syndrome. We weren’t great friends, and rarely hung out outside of church, but I knew of Robert. I knew I could expect him to be dressed so sharply in his suit and tie every Sunday, wearing that big contagious smile from ear to ear. Robert seemed to always draw a crowd.

Regretfully, I never really took time to get to know Robert until I was in college and leading a D-Now at their house. It was then that I learned that there was SO much more to Robert than what I thought I knew from a distance. He is a sweet young man, incredibly funny, loves people and especially loves making them laugh. He gives great bear hugs, but will quickly let you know if a high five or fist bump is more appropriate on that particular day. Once you take time to get to know Robert, you become his “brother” or his “girlfriend,” and if you are the latter you quickly have to let him know that you can be his friend who is a girl…otherwise you’re stuck forever. 😉 The most important thing that I have learned about Robert though, is that he is SO much more than a diagnosis. He is Robert, a charming young man who happens to have Down syndrome.

Although I knew Robert was not defined by Down syndrome, I did not know anything about the chromosomal condition. The day Harrison was transferred to the NICU, and “Dr. No Feels” told us about his suspected diagnosis, I had very little knowledge about Down syndrome, but I knew Robert. Getting to know him deeper than surface level has been something that has helped me transition into our new adventure a little more smoothly. Thank you, Robert, for showing me that people with Down syndrome are not defined by their diagnosis but are all amazing individuals with so much to offer the world.

On that note, I’d like to introduce you to Helen. Below are the words her mom wanted to share.

💙 The Upside of Down syndrome 💛

Helen Bea

Ponder, TX

4 months

I have dreamed of being a mom for so long and my dream became a reality when I found out I was pregnant just over a year ago. My husband and I were thrilled to start our family! I had a textbook pregnancy with a few surprises! Our first surprise was that we decided not find out the sex of our baby, then baby spontaneously came 15 days early and I had a quick, unmedicated birth to a beautiful blonde haired girl! Our second surprise happened when there was quite a bit of meconium and the OB called the NICU team in to assess our baby. They wanted to give her a little extra help breathing, so off to the NICU Helen went with her daddy in tow. When the nurse practitioner returned she gave us our third surprise. She said, “Helen has some markers consistent with Trisomy 21, or Down syndrome. Do you know what that is?” I shook my head yes and stared in disbelief. An extra fat pad on her neck, almond shaped eyes, a gap between her big toe and second toe, and a crooked pinky were some of the markers she told me about. I looked at the 2 or 3 pictures I had of her over and over to see if I could see what she was talking about. All I saw was this beautiful baby. Helen was perfect.

The diagnosis was a phrase. A blanket of possibilities. My baby, however, was a gift chosen just for us. A precious adventure that I never knew I was ready for. We were so grateful to be surrounded by our family, friends and others who loved us so well and prayed for Helen while she was in the NICU for 3 weeks. It was amazing to see how people had been placed in our lives for such a time as this. From a neonatologist that I met on a Disney Cruise 16 years ago, to a NICU nurse and a pediatric Hematologist/Oncologist that I went to high school with, to a paramedic that went to my rival college the same time I did, we were surrounded with knowledge and support.

Helen was diagnosed with Transient Myeloproliferative Disorder (TMD) which basically looked like she had leukemia, but she doesn’t. It cleared up and her blood work looks perfect now. Kids with Down syndrome often have a higher possibility of contracting leukemia, and because of TMD, her chance is 30% higher than others. We’ll do an extra blood test every year to check her blood levels.

Today, Helen is rolling over, starting to sit assisted, bringing toys to her mouth and holding her head up better everyday. She is the happiest baby and is always smiling. This is fitting because her name means Joy Giver. She has stunned her doctors, and we’ve never expected anything less from her. She is a rockstar and she’s going to change the world! We are so grateful to be entrusted to care for and love her, and so thankful to share this journey with our Rockin’ Families.

Happy October!

Hello October and hello Down Syndrome Awareness Month! Before Harrison, October was a month for everything pumpkin, crisp air (maybe), and all things fall. Now, it is a celebration of something beautiful! I have mentioned before that my news feed and Instagram are full of families who have a loved one that rocks an extra copy of their 21st chromosome. I sometimes forget that not everyone gets to experience this journey first-hand.

This month, some moms from my Rockin’ Moms group are teaming up to spread awareness and showcase the amazing things that our littles are doing. Prepare yourself…over the next 31 days, your newsfeed will be full of cuteness!

I’d love to share some information about living life with an extra 21st chromosome. What questions do you have that I can help answer? (You can message me questions, too, if you’d rather not post them here.) I’m still new to this, and am learning all the time. Let’s learn more together!

I’m going to kick it off with a face many of you see on the regular. 😊

💛The UPSIDE of Down syndrome 💙

Harrison Robert Dennis

8 months old

Fort Worth, TX

After what seemed to be a pretty routine pregnancy with a healthy but “chill” baby boy, our doctor had some concerns about his growth. A few appointments, some extra sonograms, and a stressful weekend later – we were asked to go to the hospital for induction 5 weeks early because the baby wasn’t growing, and the flow of blood through the umbilical cord was beginning to reverse. A 4lb Harrison made his entrance dramatically, like his sister, without a doctor nearby and the nurse catching him in the bed. The NICU team checked him out, and he passed their tests with flying colors.

He stayed with us in our room for the next two days, but began showing signs of pulmonary distress the day we were supposed to be discharged. It was then that we were told that he likely had Down syndrome. We were transferred to the children’s hospital next door, where we spent the next 10 weeks.

Now, Harrison is a fun-loving 8 month old with so much personality! He loves his brother and sisters, and watches every single thing they do. He likes to “talk” and laugh. Tickle fights may be one of his favorite things ever. He is rolling around everywhere, and is working on sitting.

Early on in this journey, our family experienced every possible emotion. It was a rollercoaster. Fear of the unknown is the best way I’ve found to describe what I was feeling, but God is good and He turned that fear into something so beautiful! I am so thankful for the gift that Harrison is to our lives. He has changed our family in so many amazing ways in his 8 months of life, and is the greatest gift that I didn’t know I needed.

“I’m so glad I live in a world where there are Octobers.”

– L.M. Montgomery, “Anne of Green Gables”

Perfectly Imperfect

Hello faithful followers!

This week, we will celebrate Harrison turning 7 months old!  That is crazy to me!  We haven’t updated in the almost 4 months since we have been home because life has been crazy busy (although I have started a few different blog posts that just aren’t finished yet).  About 2 weeks after Harrison came home, we celebrated Easter.  Our feet hit the ground running with planning our church’s mEGGa hunt outreach event, and before we knew it summer was upon us.  We had a fantastic summer full of new adventures, and H was such a trooper during Preteen Camp, LIT Mission Trip, and VBS. He really is such a great baby!  He is the most perfect addition to our family.

When we received Harrison’s diagnosis, we were often asked “Did you KNOW?” Most times, that question was asked with curiosity, but there were times that my “no” response was met with responses of pity, sorrow, and regret.  I would like to let you know that WE DO NOT REGRET having Harrison.  His diagnosis is not a burden. Was it scary in the beginning, yes, because we are used to viewing “different” as “scary.” Let me tell you something – Harrison is more like our other kids (or any kids for that matter) than he is different. He is such a huge blessing in our lives. We are only 7 months into this adventure, but so far one thing has been made perfectly clear: Down syndrome is a GIFT.

From the moment we received his diagnosis, we have been surrounded by so much love from the Down syndrome community.  My Facebook and Instagram feeds are so full of moms and dads who have at least one child who is rockin’ an extra chromosome, that I often forget that we are a minority.  In reality, only 1 in 700 babies are born with Down syndrome in the US.

We’ve seen huge advances in medicine since I was pregnant with Austin in 2009-2010.  During that pregnancy, there weren’t many reliable options as far as non-invasive tests were concerned, so when we were given the option to do some diagnostic tests, we declined.  We valued our baby’s life regardless of what any test would have told us, so the increased risk of miscarriage was not worth it in our minds.  Since then, prenatal testing has come a long way in a short amount of time.  In our subsequent pregnancies, we never even considered it, and I honestly did not even pay attention to how that particular field had advanced. Looking back now, I do not know if we would have done anything differently. We had a solid chance to fall in love with Harrison for who he is, and not “see” his diagnosis.  At the same time, I wonder if we could have prepared ourselves a little more for the journey we were about to take.

Sunday night on 60 minutes Australia, a segment aired that looked at NIPT (non-invasive prenatal testing) and considered whether it would mean the ‘eradication’ of Down syndrome (referred to in the medical world as Trisomy 21). The NIPT is quickly becoming a routine lab draw in the 1st trimester of a woman’s pregnancy. They were interviewing the mom of a boy with Down syndrome who is advocating across the continent to allow mothers access to information regarding Down syndrome.  Her hope is that following a positive NIPT, these moms and dads can at least make an informed decision regarding their pregnancy, rather than feel the pressure to terminate because their baby is not “worthy of a life”.

Prenatal testing can be a wonderful thing but it has to be accompanied by expert counseling, unbiased information and access to support groups and families in similar situations. Unfortunately this does not happen – not in the United States, not in Australia, not in any part of the world. Women are being pressured and bullied into termination and are not being given adequate time and support to process the information properly. A large majority of pregnancies that get a positive NIPT result end with termination.  Some studies show that percentage being over 90% worldwide, NINETY. There are countries like Denmark and Iceland who report that close to 100% of all women that get a positive test for Down syndrome terminated their pregnancy.  That blows my mind.

Not only has this notion of eradicating Down Syndrome caused great offence to families and siblings of people with Down Syndrome, but for the actual people in our world that have Down Syndrome it sends a clear message that they are not deemed worthy of life. Most (if not all) of these families and people with Down Syndrome would actually not choose to remove the fact that they have Down Syndrome, as it makes them who they are. I’ve found myself wondering why we have to prove that our children are worth it.

People with Down syndrome are not a ‘risk’ and they do not need to be ‘eradicated’. It is our society that needs to change, especially in the medical world. There are few stories in our T21 (Trisomy 21) community of people with a prenatal diagnosis receiving encouragement and support to keep their baby. The majority face considerable uneducated pressure to terminate by a wide range of medical professionals. (That makes me all the more thankful for our medical team!) What these families need is support and to meet someone who has been in their shoes. They do not need to feel (or hear the words) ‘sorry’ about valuing their precious little unborn child. Life is so precious, let’s ensure it stays that way!

Imperfection is perfection! We need more compassion, more love, a respect for human life. We need to live in a society where difference is valued and where we have to learn how to relate to a range of people. This grows us as human beings. When we start to decide whose life is deemed worthy or not, we are heading into the dangerous territory of eugenics. It wasn’t that long ago that other minority groups were being persecuted and killed for simply being who they were (Jews, Native Americans, African-Americans, Aboriginal people in other parts of the world…) and we are now horrified at the atrocities that took place. We are quick to rally behind the racial injustice that is taking place in our world today, so why are we not doing the same for all people regardless of their abilities?

In 1960, the life expectancy of a person with Down syndrome was 10 years.  Due to the incredible advances in medical technology, that has increased dramatically in recent decades- from 25 in 1983 to 60 today.  People with Down syndrome now attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways.  They have friends, they possess many different strengths and talents, and lead fulfilling and productive lives, just like anyone else.

If you ask the family of a person with Down syndrome,  they will tell you that  it’s not Down syndrome that they find hard, it’s society’s negative stigma.

As a mother of a child with Down syndrome, I can genuinely say that Down syndrome is not what defines my son. Yes, it is part of what makes him who he is but he is so much more than that. I don’t see a child with a disability, I just see Harrison. Yes, there are challenges, there are many appointments, and there will continue to be more of these things as he grows (as there are with parenting any child). Just because we struggle at times it by no means says that we wish our child wasn’t born. We grow and mature through these challenges and wouldn’t want Harrison to be anybody other than who he is.

Our life is better with Harrison in it.  He doesn’t suffer, and he doesn’t lack quality of life. Our other children are better people for having him in their lives, and we are better parents for having him our lives. Yes, we have challenges to deal with at times, but show me a parent and a child that doesn’t. Imperfection is actually perfect. It’s what makes us human and what gives us the most important lessons in life.

Family of 6

 

Home and All That Goes With It

This post will be brief, functional, and not even close to everything we want to share about the last leg of our NICU journey.  All that will come in time, but there are a few important things that we feel like everyone should know to be able to move forward.

1. We. Are. Home!!!

This one may seem somewhat obvious, especially if you follow us on social media, but I just thought I’d throw it out there because it’s still hard to believe it’s real.

2. Harrison is doing well

In the last week before he was discharged, Harrison had a number of tests run that showed some pretty amazing things.  An echocardiogram on his heart showed a slight decrease in the size of his VSD, and excellent heart function otherwise.  We will continue to monitor this for the next few months, with an eye toward surgery down the road.  However, one of the cardiologists did say that he is “cautiously optimistic” that the defect may heal enough on it’s own to avoid surgery.  We are praying in this direction.  He is still on a heart medication (more on this saga in a later post) for the time being.

H’s blood gas levels, as well as an x-ray of his chest revealed lungs that are in great shape.  He hadn’t had breathing problems in quite some time, but these tests did a lot to reassure us that things had indeed improved.  He was taken off oxygen last Wednesday (March 22), and his breathing and O2 saturation levels haven’t wavered since then.  This is a HUGE answer to prayer, as this was one of his main problems early on.

As far as eating goes, which was the final hurdle on our way home, Harrison is doing pretty fantastic.  He’s having a little trouble with digestion (prayers appreciated) but his intake is great!  Praise God!

3. Harrison is still very fragile

Premature babies, especially those with Down syndrome, are at a very, very high risk for infection.  Per the orders of his pulmonologist, Harrison will be avoiding large indoor gatherings of people (church, parties, etc.) for a minimum of the next month, maybe longer.  He is fine going out to open-air gatherings (like baseball games) because the sun tends to kill most airborne germs, but PLEASE REFRAIN FROM TOUCHING, KISSING, OR OTHERWISE MAKING CONTACT with Harrison if you see him.  We are not trying to be rude, but a common cold, a “sniffle” or even “allergies” can be deadly for him.  Thank you for your understanding on this subject.

If you want to come visit (with or without food *wink* *wink*), we would welcome it, but please call or text first so that we can make sure that it works with H’s sleeping/eating/appointment schedule.  Also, if you event think you might be getting sick, we ask that you delay your visit to another day.  Finally, we ask that you not bring small children with you (as dearly as we love them), so as to avoid exposing Harrison to unneeded germs.

4. Life has changed, but hasn’t stopped

Our routines, our sleep patterns, our calendars, and pretty much everything else in our lives looks very different than it did 11 weeks ago, but we are still the Dennises.  One thing Brandi and I decided early in this process was that having a premature/special needs child was not going to isolate us from the people and ministry that God has placed us in.  In fact, we feel like it has uniquely equipped us to minister in a way that we never have before.  We may not have a “normal” life anymore, but we wouldn’t have it any other way, and we look forward to figuring out what the journey looks like from here.

Stay tuned for more on this crazy adventure.  Love you all.

Until my heart believes it

Normally when I’m introduced or talked about by my brother it normally goes something like this:

“This is Lesley, my sister. Some of you might know her but most of you probably don’t because she has been on the world race for a year (or living in Georgia, or is currently on the World Race again).”

I’m writing this from the Philippines while leading a 9 month mission trip called World Race Gap Year.

When people look at my Instagram feed or my Facebook they tend to think that this thing I’m doing is glamorous. People frequently tell me how jealous they are of this life I get to live. I’m not going to pretend that going to 17 countries over the past 4 years is not a blessing, because it is, but being away from my family is not something I’ve enjoyed during those times. Hearing that your dad has cancer, your grandpa died, and your nephew was born prematurely with a heart defect doesn’t make for such a great experience.

The truth is that I seem to be the one who is always away.

People don’t get to see the other side of this “cool” thing I’m doing. The day that Brandi went into labor I was traveling to a village in Nepal that was about 7 hours away from Kathmandu. A village with no wifi, but thankfully enough cell reception to get text messages. While I was there I found out Harrison has a heart defect and Down Syndrome, and that my grandpa passed away. I spent most of that week in tears. I’ve cried more in the past couple of months than in the past couple of years. My heart is constantly broken by what my family is walking through and that I can’t be there with them. I want to hold Baby H. I want to watch the other 3 bigs so that Michael and Brandi can hold Baby H. I want to sit on the couch with my dad when he doesn’t feel well or go with my mom to get a pedicure so she can relax. Soon I will get to do all of those things, but for now I have to love them and pray for them from afar.

It is hard to even have a conversation when there is a 14 hour time difference and sketchy wifi, so here are all the things I haven’t had the time or capability to say.

Baby H: You are a fighter. God made you that way. Don’t ever let anyone tell you differently and know that I always have your back no matter what. I’ll laugh with you, cry with you, adventure with you, whatever you need, I’ll be. Meeting you when I get home is one of the things I look forward to the most.

Michael & Brandi: You two are the best siblings anyone could ever have. I wish I could be there to help you and I will as much as I can once I’m back. Baby H is right where he is supposed to be. You might not know all the answers or think you have enough energy for one more day, but God does. He has provided in every situation before and He will continue keeping His promises.

Austin, Emma, & Nora: The people on my squad are probably tired of seeing pictures of the three of you, but I just can’t stop showing them. You were made to love your brother in the best ways. Austin, you will teach him everything he needs to know. Emma, you will show him the love he deserves from every person. Nora, you will show him that life really isn’t that serious and literally any situation can be fun. You three bring me so much joy and I am blessed that you call me Aunt LeLe.

Mom & Dad: It has been a long journey. You’ve been through a lot and will probably go through a lot more, but keep asking Jesus for enough grace to walk through it. I’ve watched Him sustain you through each diagnosis, each decision to start or stop treatment, and each day that it has all seemed like too much. You are the perfect grandparents for Baby H because you know the value of life and you know that each day the Lord gives us is a blessing.

So yes, life is hard and a lot of days I cry, but God isn’t unaware of this. He knew exactly where I would be during each one of the moments that have broken my heart. He never stops understanding and He never leaves. Though I may doubt why I’m in the Philippines, He knows and that is enough. I serve a God that is infinitely wise and infinitely loving. He doesn’t do things by mistake and He promises that He has good things for His children. I have to remind myself of these things daily and I will keep reminding myself until my heart believes it.