The Year 2016: A Tale of Two Years

The Year 2016 is a paradox for us. It was the best year of our lives, and yet, it was the worst year of our lives.

It will forever be etched into the history book of life for Andy and I.  It contains many life altering moments – good and bad.  I find myself reliving these moments and reflecting on how very quickly your life can change.

When we entered 2016, I can honestly say I was the happiest I had been in my life. I was pregnant with our first child.  I was going to be a mother and Andy was going to be a father. By Christmas, Andy and I would be a family of three with a beautiful baby.  I was on top of the world; the prospects of the Year 2016 held unlimited happiness for us.

As we exit 2016, that happiness is gone.

My pregnancy started out rough from the beginning.  I had morning sickness (more like all day sickness) for weeks on end – all day, every day.  I couldn’t go to work some days and when I was there I wasn’t able to concentrate.  I could no longer work out without the risk of getting sick. I didn’t enjoy anything.

At the time, I felt hopeless – was my whole pregnancy going to be this way? I had heard of that happening.  I didn’t know how I would make it through if that was the case.

And then by week 18, I was starting to gain weight (shocker, I know!). But after a year’s worth of carefully and meticulously counting every calorie and weighing myself every day, this was something that was hard for my mind to accept.  I complained about my clothes no longer fitting.  As the weeks went by and my stomach got bigger and bigger, I complained about being out of breath when walking up a flight of stairs.

To my credit, I tried to find the positive. I told myself during those rough times, “It’s OK.  It will be worth it in the end.  You will have a tiny, precious baby to hold in your arms.”

I look back on this time period and shake my head. I want to scream at my past self and say, “Enjoy every single bit of your pregnancy now, because nothing is promised! Soon you will truly know what hopelessness and despair feel like!” Life is all about perspective.

It was around 20 weeks that we found out our son had Down syndrome (Ds). I will be honest with you.  Our first reaction was that of devastation.  And of grief.  (I am shaking my head. Yes, grief).  We felt like our world had come crashing down on us.  The future we were counting on was no longer the future we were going to get.

A million questions ran through our heads. Would we (God forbid) love him any less?  Would our family and friends love him any less? How would the world treat him? Would he have any friends?  Would people look at him in fear? Would he be able to go to college?  Would he be able to find love?

We quickly discounted the first question.  Of course we would love our son.  He was our son – our child – our own flesh and blood. So what if he has Down syndrome? We wouldn’t love him any less. It is only a part of who he is.  It isn’t all of who he is. And our family and friends felt the same way too.  That was all that mattered.  Everything else we would figure out. From that point forward, we put all of our energy into educating ourselves and preparing for our son.

We did what we always do when we don’t know much about a particular topic – we actively sought out resources.  We immediately purchased and read books, scoured informational resources on national Ds websites and read blogs of parents who have Ds.

We soon came to realize – everything was going to be OK.  Children with Ds are able to do the same things typical children can do – just at a different pace.  All of the stories we read talked about how much love and light children with Ds bring into this world.  How their smiles can light up a whole room. How they teach their parents more about life than their parents could ever teach them. Yes, there would be challenges along the way. But, we were in a good position to handle those challenges.

This was where we started to gain a whole different perspective in life.  We started to look at situations differently.  We looked at situations with more kindness and understanding.  We refrained from making judgments about anyone or anything.  We tried to put ourselves in others’ shoes whenever looking at any situation.

For me, personally, I also realized that this was what my life had been leading up to – to be a faithful and unwavering advocate for my son. I was chosen for him. I would take care of him and give him the resources he needed, but most importantly – I would be a wonderful and caring mother to him. Not only did I want to advocate for him, but I knew I wanted to advocate for all individuals with Ds.  I came from a place of ignorance and I felt compelled to teach others what I had learned.  Down syndrome is nothing to be feared – it is something to embrace with open arms.

Unfortunately, with Ds comes an increased risk in medical issues. We learned early on that Jensen had a confirmed heart defect (VSD) and another potential heart defect (it turns out he had a total of 4). And after 30 weeks, unbeknownst to all of us, he very quickly developed fluid around his lungs and stomach (hydrops fetalis).

The last few weeks of his life were the most worrisome weeks of our lives.  Hydrops fetalis is associated with a very high mortality rate if the underlying cause is not found. I was hospitalized for a week and had several procedures done to increase Jensen’s chances at survival. Fortunately, we were receiving top notch medical care from the University of Michigan.  Even so, I cried and prayed for my son.

Due to complications, I had to have an emergency c-section at 35 weeks.

He was born on August 5, 2016. It took a few hours for me to see him and the waiting was filled with worry and excitement.

When I did get to see him he was the most beautiful thing I had ever seen in my life.  I cried tears of happiness. I was his mother.  This little guy was mine (ours). It hit me all at once.  This is what it feels like.  This is that indescribable feeling mothers talk about when seeing your child for the first time.

I will write about the 43 hours of Jensen’s life in a future blog post, but for now, I will sum it up by saying this: it was the best and worst 43 hours of my life.  I went from having so much love and happiness when meeting our son to utter devastation. During the last hours of his life, I held all of those emotions together at once.  Who knew you could do such a thing?

We are leaving the Year 2016 with our hearts shattered and our spirits broken. Losing Jensen is incomprehensible to us. I always knew the definition of incomprehensible, but now I know what it means because I am living it every day.  How do you even begin to comprehend the incomprehensible?  The answer is you can’t.  So you have to try to figure out how to live your life without a part of your family – and without any good answers.

And yet, we have learned so much through the Year 2016. We have gained perspective. We learned about a love so pure and true it makes you cry. We learned what’s truly important in life. We learned never to take anything for granted. We learned that amidst all of this pain, the beauty and kindness of people shines bright.

We also learned to live our lives with purpose.  If we are going to do anything in this world, we want to leave a meaningful impact.

I also learned to find my voice. It was because of the voices of those who were brave to share their stories, I was able to learn more about the life of a child with Down syndrome. These blogs and articles I found went beyond the medical aspect of Ds. They were real life experiences. And after Jensen died, I read about infant loss and grief on blogs of other loss moms.  That is why I am sharing our experience so openly. I want to raise awareness about Down syndrome and I want to help other loss moms if I can.

We learned things happen beyond our control and nothing is promised in life. We learned we are all on borrowed time and to slow down. We learned relationships and family are all that matters. Because the connections we make with people, be it strangers or family and friends, is what our human existence is about. It is the love, the kindness and the compassion for others.  Share it. Treasure it.

We also learned that this world is full of so many tragedies and heartache, that we are thankful for what we do have.  We know we are incredibly fortunate for a multitude of other things.  But some days it is hard to see this.  Some days, I am completely bitter.  Most days I am in a fog of complete grief.  I don’t want to be a bitter person. I don’t want to be sad.  But this is how grief works.  I can’t snap out of it.  It takes time. It is a new life and we will never be the same people as before.  We ask that you please be patient with us.

But the most important lesson of all is this: We learned we were blessed to have had Jensen in our life, no matter how brief of a time he was here.  He was and is a true and absolute gift.

The Year 2016 is ending and I am relieved but sad at the same time.  Time keeps moving and it keeps taking me farther away from my son. The Year 2016 gave us great happiness – we had a son, I became a mother, and Andy became a father.  And yet, it is a year of great sadness for us.

But 2017 is a new year and we are hopeful for happiness.  One thing is for certain- although he isn’t here, Jensen is still our son. I am still a mother. Andy is still a father. Jensen is and always will be our first child. We will always carry him with us and we will always honor him – no matter what year it is.