He’s Perfect, he has Down Syndrome, but he’s perfect.

Thank you for reading my blog. This past week I’ve been shock by a couple of you who have asked when the next one is coming, the truth is I had a little bit of writers block. Telling a story that one lived should not give writers block, but determining how to tell it important to me. I started this blog to give my viewpoint as a father / husband and to share the story of our family’s past few years with feelings and raw emotion, in an effort to process it all and be at peace. So far, it’s really helped me. So here goes the birth story. We left off with Michelle going into C section, just before Midnight, Nov 1, 2016. The Cubs just won game 6 of the World Series, forcing a game 7 in Cleveland.

The birth of our first 3 children all brought challenges, but nothing to the extent of Malix. Trent was born in 2008, came 5 weeks early, had a breathing lapst and ended up in the NICU for a few days. Lydia was born “quiet” with the umbilical cord wrapped around her neck. When she started crying, I told myself right then, the greatest sound in the world is a baby crying. I still believe that to this day. Sidetrack moment: Last year I was on an airplane, Southwest in fact. The plane was getting full, there was a family with 2 young children (I would guess ages of 6 years for the oldest and 6 months for the youngest) and everyone was avoiding them with their open seating plan. I could see the parents eyes, they looked beat and the last place they wanted to be was on a plane with their kids. I went right up to them, sat right infront of them, turned around and told them “I firmly believe the best sound in the world is a baby crying.” They looked confused and then I told them that we have a daughter that was born with the umbilical cord around her neck and when she started crying I was beautiful music. They laughed, thanked me and looked relieved. The 6 year old then started to tell me that he was excited and sad to say good by to his grandfather. He said Grandpa is on his way to heaven. I cried, we all cried. The baby slept the entire flight. So moral to the story, next time your on a plane with young kids, sit by them, shut the hell up and act like you love their kids crying. We never know what others are dealing with. It would be easy for everyone to say “why are they flying with kids?” We are all dealing with something. Ok, back to my story.

Our third child, Matea was the most normal birth. We waited forever for her to come and was close to a C-section. Besides that, all good.

Michelle is in operating room, I’m about to get scrubbed in as we. All is going as planned, just a few hours early. Waiting for a nurse, waiting, waiting, waiting. I was ready for the news that the baby (Malix) would be taken right after birth to Children’s Hospital. The plan was for me to ride in the ambulance with him. Sounds easy, right. Goodness. We had a plan for our newborn to be taken across town to a different hospital and my wife be here.

Still no nurse, keep waiting. Midnight strikes. Ok, now it’s November 2nd. I’m trying to distract my anxiety to realizing that our child may now be born on the day the Cubs win the World Series, assuming they win of course. Then the nurse comes out. Couple problems. 1)baby heart is in “stress” Not exactlly a comforting thing to hear. 2) Michelle epidural did not work and they had to put her under. So my wife won’t be awake for an hour or so. OK, now that is a big issue.

Michelle drives the ship when it comes to most everything in our life, and I’m fine with that. Heck, I much rather have that. I’ve said before, I know baseball cards and that’s about it. Our baby has heart stress, I instantly thing he’s going to Children’s Hospital and she’s not awake to make decisions. So it’s on me. Yikes. Now that Michelle is under, I can’t go in the room. I go wait in a hall. I can see a little bit, I see baby, now they are wrapping baby in blanket. Baby is now getting a bath. Ok, if baby gets a bath, that’s a really good thing. They weighed him, took his prints (oh, I gave them a baseball to take his feet prints on). Then they come to me with our beautiful baby in a blanket. Lots are going through my mind.

Our baby is awesome. He’s absolutely perfect. From what I can tell his face, he has Downs Syndrome. I asked the nurse if he does. She smiled at me and said something to the effect: “He’s pefect and it looks like he does, but he’s perfect.” She was great. I’m thinking how I did not listen to the multiple Doctors suggesting we have an abortion. I’ve really never have had an opinion Pro Choice vs Pro Life, I never really put much thought into it. But damn be those Doctors who suggested I kill my baby. Holding him in this blanket I am so glad I didn’t listen to them. Today (2/9/20) I took a nap on the couch with Malix by my side. I was reflecting on this writing and all I could think about is how dare those Doctors suggest we have an abortion, this kid is amazing and I love, just like I love our other 3 kids. But know that he needs me more, not only to be there for him, but to fight for him, fight for his life before he was even born.

Michelle’s parents were in the room too as we awaited Michelle to come out of surgery. A lot of the details of that night are fuzzy. I remember exactly how I felt. Lucky, blessed, but very scared.

Malix passed all test that a newborn would pass at birth. We all could go to a normal birthing suite!!! This is huge. I always thought we would be separated due to his heart. We made it. He is born and we can all nap. The Cubs were getting to play game 7. I’m not nervous / excited for the game. Michelle’s exhausted. She’s in her bed, I get the rocking chair. Malix in my arms, Cubs game on.

I’ve seen this game a few times after this date. But it’s not the same. The game was great, basically the Cubs trailed, there was a rain delay and then the Cubs won. The game ran very late into the night. I blame by paternal grandmother for a trait. I can not sit quietly for a Cubs game. I firmly believe yelling at the TV helps the Cubs. Apparently nurses do not like you yelling at a TV in a birthing suite around midnight. Well, to bad. It was close and I yelled, they won and I yelled. I may or may not have been threaten to be kicked out if I wasn’t quiet. Game over, World Series Champs, Malix is sleeping like a baby. All is well. Time to lay him down and we all sleep.

Malix is laid down, new set of nurses come in. Time for his 24 hour oxygen test. He fails. Lots of worried looks, we are leaving this room, off to the NICU.

Image may contain: 5 people, including Michelle Marie and Tom Kulczewski, people smiling
Family time in the NICU on 2/6/20.

This blog has really help me process our family’s adventures. Something I missed is something that is so easy to see in the above picture. Look at Trent. The worry on his face is real. He knows his brother is in the NICU. The next few months was really hard on him and actually set him back in school quite a bit. I can tell you 100% that the Lomira School teachers and staff has gotten him to where he needs to be. But in this picture, the raw emotion is real all over his face. It really describes me, I can just fake it for a quick picture.

2 thoughts on “He’s Perfect, he has Down Syndrome, but he’s perfect.

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