Summer of 2016 We were expecting our 4th Child. With our first 3 children, we never did a gender reveal party. We wanted to do gender reveal party for number 4 in our new house in Fort Atkinson, WI. We moved a few months earlier, but thought this was a good time to have family and friends over to enjoy the day. We expected it to be a normal, pregnancy, like everyone else. No one has issues. Everything is always perfect for everyone else, social media tells em so. We went to the Ultra Sound with hopes of having the tech put the answer to our Boy / Girl question in an envelope to keep us wondering. You can read about the Ultrasound here: https://malix.life/2020/01/06/everything-is-going-to-be-fine-what-if-it-is-not/
Then we had the call. You can read about it here: https://malix.life/2020/01/09/the-call/
Now that you are caught up, let’s party! Finding out your pregnancy went from a Normal to High Risk Pregnancy, is a party what is on your mind? I was really torn on even having a party. Let’s recap: Our child has a major heart condition, my wife’s Doctor Appointments are now 45 min away at specialist, our oldest son (Trent) broke his leg and is in a wheel chair, we live in a town with only a few friends, we just bought a house we can’t afford now that my wife will likely have to take an extended leave to be with our child when the he / she is born, our child will need major heart surgery when they are born, I have a job I enjoy and I work a ton, Doctors are telling us our child will have Downs Syndrome and my mother has been undergoing treatments for Ovarian Cancer for 8 months. Those are the facts, plain facts.
Here’s what I believed at the time. 1) My mom is going to die soon and never see her grandchild. 2) My child can not have Downs Syndrome. I heard a story from a friend, from a friend, etc….. their Doctor told them their child would have Downs Syndrome and then magically they didn’t when born. That had to be our situation too. 3) The heart is a huge problem. Huge.
I was off a few years on #1, wrong on #2, but right on #3. Party on!
In heart follow up Ultrasounds before the party, Michelle and I found out the child would be a Boy. We also found out the heart is a big problem. I was born with an atrial septal defect (ASD). I had surgery at the age of 2 and no heart issues since. I was convinced that our son’s issue had to deal with me having an ASD and there is no way, no way it could be as a result of Downs Syndrome. Our son had a Atrioventricular (AV) canal defect. This is much bigger than my little ASD, much worse. To make it really simple, I had a little hole, our son didn’t have walls, his heart was 1 big chamber. Party on!
Back to the Party! Gotta party! Must party!
Preparing for the party on a warm summer day, Pink and Blue balloons are out, guess the gender games ready, food was hot, drinks are cold. Everything for a great time. But, the point of this is not to express what great hosts we are. Side Note: Just for the record, we are great hosts, so much, if you are reading this, that is an enormous honor to me and you are welcome for dinner anytime, I’m completely serious in this and I really hope many people take me up on this. We live in Brownsville, Wisconsin. I especially would be proud if you contact me to come over for dinner and we’ve never met before. I feel we do not have family / friends / new friends over enough. We spend so much time liking each others posts, reading each others blogs 🙂 and not enough time opening our homes to each other. When you open your home, be authentic. Make your favorite meal, pour tall drinks, play uno, watch TV, open baseball cards, just hang out. Don’t judge others, I won’t judge you. I will be happy as can be you are over spending time with our family. Please remember: “Fish and Visitors smell after 3 days.” My mother was an amazing hosts and always said that line to me. It’s one of my favorites.
Back to the party, here’s what I am thinking. We better have a huge party, because we throw great birthday parties for our kids, this is our son’s birthday party as I don’t think he will live to be 1. Read that over again, that is 100% how I approached this party… I don’t think our son will live to see his 1st birthday. Crazy thing, most people had no idea we were in a high risk pregnancy going into this party.
Enjoying the company of our family and friends, seeing my mother in the midst of her chemo treatments come to see her love shine on us. Life wasn’t fair, in fact, life was really hard. I was completely confused on why she was sick. To be fair, I am still completely confused to why she had to suffer. She passed away April 25, 2019. Much more on this in future entries.
The party was fantastic. We planned to have Pink and Blue balloons, the pink balloon string down and then let go of all. The blue balloons would stay and everyone would know it’s a boy. Time for the balloons, the sky opened up. Downpour. Balloons now indoors. No problem. Except internally, big problems. What does it say when it downpours right when we are to go outside to celebrate our son that is in a high risk pregnancy.
To be completely honest, the events of the party were a blur to me. I’m guessing we had Italian Beef sandwiches with cheesy potatoes, wide selections of appetizers, beer and soda. The part of the party I remember is having a private conversation with my brother in the front yard. My brother is 4 years older than me and I’ve always looked up to him. He’s a really great man, really great. I clearly remember telling him our son’s issues. His reaction changed my fear. He was calm, and supportive. He saw no issues with Down Syndrome. I thought he would be as mad as I was, he was only concerned with the Heart. The Heart is the sole focus for many months now, the only focus. I now knew I needed to take it in stride like he did.
In the past few years my perspective on Downs Syndrome has evolved. Finding out your child has Downs Syndrome was very scary. I personally never spent time with a person with Downs Syndrome before. What I have learned and experienced is life changing. Having a person with Downs Syndrome in your life is a pure blessing. I truly feel apart of a new community. I’m excited for more new experiences and adventures with the Downs Syndrome community. I can honestly say having a child with Downs Syndrome makes me one of “The Lucky Few.” So much more on this in future entries.
We (Men / Fathers) tell ourselves that no one will feel sorry for us. No one should feel sorry for us. Often we do not share how scared we feel. We need to party on, show the world that we are perfect. Show we are so damn lucky, everyone would want to be us. That our family is perfect, that our job is perfect, that our kids will never have a heart issue or Down Syndrome. Truth is, everyone has something. Everyone has something in their backpack they are carrying around. It’s ok to show it, it’s liberating to show it. Be proud of who you are, who your family is, who your friends are, who Jesus wants you to be!
More side notes, I’ve avoided talking about God and Jesus in this blog for a few reasons. Mostly is typically don’t like to talk about issues I’m not an “expert” on. I know a few Pastors / Ministers are reading this. Which is really cool, but kinda scary. You know much more about the Bible and teachings of Jesus than I do. But, I know Jesus was with my son on January 25, 2017. There is no doubt about that. I feel I can write on what I am an expert on: my experiences and baseball cards. Those 2 things I feel I’m an expert on. Baseball Cards… soon, my love for baseball cards will change our families life (there is your teaser).
There are a couple points of sharing this day. First of all, maybe you are experiencing something similar or have struggled with something. I share to tell you we are not alone. It’s ok to share. Writing this has made me so much more at peace. I believe it took 3 years to understand what I went through. I also understand that in a few more years I may have a different perspective and I’m ok with that. Lastly, maybe you know someone who is going through something like I was trying to face the fact that our son would have Downs Syndrome. Don’t tell them some story you heard from a random person that is likely overblown. Do what my brother did, listen, support, love. That’s all. Maybe even have their family over for dinner.
Thank you for reading, please comment below if you want to share anything. I have had a couple of requests to share my blog with others, please do, that is truly a great honor.