The Day, The Miracle.

Thank you for checking out my blog. Up to this point I have written about our son Malix’s prebirth, birth and now ready for heart surgery. This takes you to THE DAY. The day is January 25, 2017. It’s a snowy Wednesday in Madison, Wisconsin. I am your ordinary father of 4 kids. Lucky in so many ways. Lucky to have an awesome wife, Michelle, 4 great kids, Trent (7 years old), Lydia (5 years old), Matea (3 years old) and Malix (2.5 months old). I am blessed to have great parents, siblings, in-laws, etc, etc. But now I’m scared as hell.

I’ve always been able to take anything life throws at me. In the past 8 years, we’ve gotten engaged, moved from Wisconsin to Pennsylvania, got married, moved from Pennsylvania back to Appleton, Wisconsin. Had Trent and Lydia. Moved to Fond du Lac, Wisconsin (built a house in Fondy). Quit a job to take another job, that I ended up hating weeks after starting, had Matea, moved to Fort Atkinson, Wisconsin. Rented a tiny house for over a year, moved into a great house in Fort Atkinson, had Malix and now we are here. I know there are tons of blanks to fill in, but you get the picture. Our life has been a bit crazy, but it’s been fun. Stressful, yes, but fun (at least from my point of view).

Now we have decided to go for it all. Put all our trust in a life saving surgery for Malix. Malix has a major heart defect. He has an Unbalanced AV Canal Defect. AV Canal Defects are somewhat common, but the word “unbalanced” is the concern. Big concern. Basically he has no walls in his heart, but there are “nubs” for the walls. But they are not 50/50. The vertical “nubs” are more like 60/40. Not good at all.

Up to this point, I am confident we are putting our son’s life in one man. That man is Dr. Petros Anagnostopoulos. From now on, I’ll call him Dr. A. I’m scared, mainly because I’ve never put someone’s life in one person’s hands. It’s his “job” to rebuild his heart. We are told it’s going to be tough.

Let me pause for a moment. I grew up going to church weekly at Fairview Center United Methodist Church, outside of Monmouth, Illinois. I believe in God / Jesus. I always thought of myself as a very strong Christian. Going into this day, I would tell you that Jesus will protect him. Ok, let’s be completely honest. Did I truly believe that? Maybe to a point. In reality, my faith has never really been tested. I’ve never gone though real tough things. Back to THE DAY.

Malix and Michelle have been at the hospital for 5 days. 5 DAYS! Hanging out, eating, growing, sleeping and staying strong and healthy. Most of those days I would work, then come up at night. The night of the 24th, I stayed all night at the hospital. They have parent rooms. Malix is scheduled to go into surgery in the morning.

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Michelle and Malix, 2 days before surgery.

Leading up to his surgery we discussed how we would communicate. We decided to use Facebook. I thought this was one of our better choices. Then we could control the message and we could interact directly in our down time. Leading up to Malix’s surgery, we asked friends to wear red for him on surgery day.

The morning comes. I get up, walk down to his room. I can remember exactly what I was wearing. I was wearing flip flops, Indiana Pacers game used shorts (thanks Vance) and a UW Badgers Red Fleece. Michelle is sitting in a rocking chair, looking scared as can be. Crying like any parent would. Looking outside, it’s snowing! Beautiful Wisconsin winter day. Michelle needed to quick shower, she hands Malix to me, I sit down. Why is he so wet? Michelle gets upset at me for asking the question and tells me it’s her tears, that she has been balling her eyes out since he woke and it was just her tears. My job now is just to cuddle him while she quick showers. I hold him up. That kids is a jokster. Our first sign of God for the day. I believe humor is huge. I also believe 100% that God had Malix poop all over me. It was beautiful. Here I am, scared dad, covered in poop. Thanks kid. We get him changed and I am covered in poop. I make the walk to get changed, by all the Doctors and nurses, it was the comical relief we needed!

Changed and back in the room. Waiting for Dr. A. At this point Michelle’s sister Amanda has joined us. Doctor A comes in. Looking upbeat and super excited. “A great day for surgery! My teenage daughters are home with a snow day and I’m really excited to come to surgery!” That was awesome. Here we go, he’s excited, I’m scared, but ready to go.

We are expecting a lot. I’ll keep this really simple. They are disconnecting his heart, building a couple walls, then reconnecting his heart. The reconnected heart will not beat normal. In fact there will be some huge machines he’ll be connected to that will keep his heart going. But the big thing is that the heart needs to have some beat on his own. Without that, it’s all over….

He’s off to surgery. Hand Malix over to a nurse. We have our pager with updates. We just handed our son to have his chest opened and his heart repaired. That was it. Is that it? In reflection on this day, what a moment. Not just any kid, our son. He is now not in our care. Tough stuff. We know a successful surgery will be no less than 6 hours. So we have time. The main keeper of our time was checking out all the awesome support on Facebook. We are truly blessed to have so much support in red for Malix! We also walked around.

American Family Children’s Hospital on January 25, 2016.

We walked outside, we walked inside. We walked everywhere. It was really icy out, so outside was probably not the best venture. We then checked our pager. During the morning we received a few pages. All good stuff.

One of the pages we received the morning of his surgery.

Michelle found out Chapel was at noon. She really wanted everyone at chapel, together. Everyone was praying for Malix, we might as well go too. In chapel it was Michelle’s Parents (Jim & Kim Casper) and Michelle’s Sister (Amanda Werner) with Michelle and I. I was glued to the pager. Nothing, zero updates during chapel. Frankly I am not scared as hell. But for the first time in my life, I put everything in the hand of god. I thought I had before, but it was nothing until this moment. Then we decided to go back to the room.

Walking down the hall, approaching the nurses station. No nurse wanted to look up and make eye contact. That’s not good. All the nurses were very friendly, but now, they didn’t want to say hi. Then I see one of the doctors from our team on the telephone. Why is she up here? She should be in surgery! This is not good at all.

We go into our room. A nurse tells us the doctor is looking for us. We have not heard anything and now they are looking for us!?!?

The Doctor comes in. She looks happy, yet confused. She tells us right away she has some good news. Here it goes: Dr. A was able to repair the heart and got him back together. Then it was time to hook up his heart. They needed and was expecting a slight beat, very slight, but the machines would take over, needed the slight beat though.

They hooked his heart back up. Nothing, completely nothing. They put his heart back off line and ran it with a machine. I know I’m not using the correct terms, it’s a blog not a medical journal. 🙂 Dr. A then relected, what did he do wrong, why was he getting nothing. He wanted to try again. He connected it again, nothing. Absolutely nothing. This is horrible! Now all the Doctors are very concerned. This Doctor came upstairs to find us. We needed to now be in on the situation. She came to tell us our son may not make surgery. At best they could repair his heart to make it one big chamber. This was actually one of the choices we had. It would give him 10 years (at most) to live, baring no medical advances, or political advances for a heart transplant, since he has Down Syndrome and is discriminated against a new heart in the state of Wisconsin. I’ll get that changed.

Back to our Doctor, she came up to tell us this news. Tough news for any parent to hear, but this isn’t any parent, this is US! Our life, our son!

When she came up, the nurses told her we were at chapel. Our Doctor thought that was the best place for us at that time. While we were at chapel, Dr. A went for it a 3rd time. There is no medical reason why the heart would even have a slight beat on the 3rd time. Then it happened. BOOM!!!! The Miracle Happened.

Not only did Malix have a slight beat, this kid’s heart beat like normal. Our Doctor received this news via the phone while she was waiting for us. While we were praying like no other. I asked how this could happen. Simply put, “there is no medical reason why it worked.” No reason why his heart is beating, no reason why we don’t need a huge machine with him to keep his heart going. He’s a Mighty Guy. It’s truly a Miracle.

Less than 2 hours later, Malix is back in the room. Hooked up to tons of medicine and monitors, but not a machine to beat his heart. He’s still out and will be for a few days. Chest is open and you can see his heart beat. One of the craziest things in the world to physically see a heart beat. Recovery is now beginning. Full successful recovery. I can’t wait to share more soon!

Right now is my action time, soon will be yours.

“Would a Heart Transplant be a better option.” Is all I asked.

“Malix does not qualify for a Heart Transplant.” Dr. A responded.

“If Malix did not have Down Syndrome, would we be looking at a Heart Transplant.” I asked. The answer shocked me.

Imagine this, the time December 2017. We are in a meeting, the meeting. In the small room is Michelle, Amanda (Michelle’s Sister), Dr A, his team and myself. I’ve talked about this meeting a few weeks ago in an earlier post about 3 options, 1 decision. There were really multiple takeaways from that meeting. The thing is that each item really needs to be looked at individually due to the magnitude. We are going through the heart issues, then there is a huge wrench in the heart. Malix’s heart needed 2 new walls built, easy right. We’ll the “nubs” to connect the vertical wall is not 50/50. It’s more 60/40, making the surgery team not as comfortable with the procedure. It get’s quiet. The team says this is our only shot. So I bring up the question about a Heart Transplant. I know a Heart Transplant is not something that they have sitting around, but hey, it’s worth bringing up.

Then I’m told something, something 38 months later I still haven’t fully processed. Our son, our awesome wonderful life changing son, is not eligible for a transplant because of the fact he has Trisomy 21. Does having a 3rd chromosome on #21 make it impossible to hook up a new heart? Does having a 3rd chromosome #21 make his body reject a heart from someone with 2 chromosomes on #21. We are at the University of Wisconsin working with the Heart Team. The finest Doctor around is sitting in front of me, looking me straight in the eye, telling me he can not preform a Heart Transplant on my son. Say that again, He CAN NOT perform a needed Heart Transplant on my son.

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We’ve Got This. Lydia, Trent and Matea visiting the hospital.

According to the UW website as of 3/6/20, the median wait time for new heart is 28 days, Malix CAN NOT have a wait time. US News and World Report ranks University Hospital number one in Wisconsin. The Headline for a UWHealth webpage on Heart Transplants reads : “End Your Transplant Wait” We are at the University Hospital, the #1 Hospital. But it’s not up to them. Our family is going to change that.

In Wisconsin, if you have a disability, you will not get a Transplant. If you have Autism, you will be passed, if you have Down Syndrome, you will be passed. This has to change.

Recently I have been reading about Gracie’s Law. Gracie’s Law has passed the House in Georgia, onto the Senate. Essentially it eliminates using a disability to discriminate against someone for an organ transplant. There are 11 states that have passed similar laws. Those states are: California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, Ohio, Pennsylvania, Washington, Louisiana and Indiana. There are 39 of us who live in states where a person with a disability is discriminated against for an Organ Transplant.

To my fellow Wisconsinites (yes it’s a real word, possibility my favorite word) , right now is my action time, soon will be yours. I have been in contact with my local State Rep and Senator. Senator Fitzgerald’s office and I have exchanged a few e-mails. So far they seem interested but need to do more research. I believe that they will be shocked at what they find.

Today I received a call from Representative Born’s Office. They were also very thankful for me contacting them. They were surprised to hear that this discrimination is allowed. Both offices let me know the 2020 session is closing and it would be something for January of 2021. That may seem like a long time, but I am very happy with that.

I said before I haven’t fully processed this yet, I don’t know if I ever will. I have many goals in life. Add a parent in Wisconsin never having to hear “Your child is not eligible for a needed life saving transplant because they happen to have a disability” to the list.

Here’s what I need from you. Get ready. When this bill hits the State, I need you to call / write / e-mail your Wisconsin State Senator or Rep and tell them how this needs to change. Don’t bug them yet. If your friends with Senator Fitzgerald or Representative Born, drop them a note. Tell them they are lucky to work with the Kulczewski family.

If you have Media Connections get ready to tell them of this bill, make Malix the face of change for good in others. We’ve always believed he’s the super hero in all of us.

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Michelle’s Family in our Mighty Malix Shirts, 1 year after the Surgery, February 2018.

We Are The Lucky Few!

So far this blog has been in order of our journey with Malix. I am going to go a little off track. In August of 2016 we had a family over for dinner, the last few minutes of the night changed how we interacted with other families that have a child with Down Syndrome, until our family trip to Florida this year (2020). I’ve found writing in my reflection really helps me. So here it goes. First of all, I’ll give the disclaimer these are my own thoughts and ideas as a dad / husband/ etc.

Fall of 2016 a family friend had a friend that had a daughter with Down Syndrome. She put us in touch with them, Michelle met the mother, went to lunch, started to become friends with her. She told Michelle if there is anything they could do to help. Yea, we have friends that have gone through what we are about to go through!

We had the family over for dinner at our house in Fort Atkinson, they have 3 children total. It was a great night, the kids played awesome and we were thrilled how it was going. Then the conversation happened……

Just a couple dads, hanging out on the deck. He turned to me and flat out said that they don’t hang out with other families that have a child with Down Syndrome. He didn’t think it was good for their child to be around other children with Down Syndrome. He didn’t want their child to be “compared” with others. That was it. Simple as that.

They left soon afterwards, I told Michelle about our conversation. She thought I was joking. I wish it was a joke. Here we are, a family of 5, soon to be 6. No clue about Down Syndrome of what it’s like to have a child with Down Syndrome, we are now told it’s not good to hang out with other families that are going through the same thing. So essentially we are on an island. I really felt this way, then Michelle joined a Facebook group for Mother’s of children with Down Syndrome.

From this group, Michelle went to a conference in Nashville Fall of 2019 for Mothers that have a child with Down Syndrome. She loved it, shared it was such an amazing, empowering experience. I’m very happy she went! At this conference, she learned of A Dream Retreat. Florida in February, I’m all in!!!

A Dream Retreat? To me a dream retreat typically would include about 12 baseball games in 6 days. But life has a funny way of changing…. for the better!

We arrived in Florida Sunday Feb 16th and returned Sunday Feb 23rd. I just can’t stop thinking about the week, the best way I can describe it is “blessed” and “lucky.” Let me explain please. To very truthful, I fully expected it to be very fun, but I expected it to be the fun of a bunch of stressed out parents that just needed a “get away” and to feel in the comfort of others who went through the exact same thing. I often make the miscalculation that if someone is in the same position as me (being a father of a child with Down Syndrome) that means to me that they had the exact road to get there. You can read about my road in other entries, but to save you the time basically we found out that our child may have DS, I got really really mad, then we had him and we love him. Still a little confused “why us.” etc, etc, etc.

I’m assuming some of men and women who I met and are fellow parents may read this. If so, let me give you a spoiler alert: I have complete love for you and THANK YOU! Ok, ok, now your thinking, why am I reading this. Here we go.

We land Sunday and do Disney Animal Kingdom and Epcot on Monday as a Family. All good. Tuesday, Trent and I do Star Wars at Hollywood Studios, Michelle and the other 3 do pool day. Cool all around. Wednesday is Dream Retreat day at Magic Kingdom. Let’s live it up.

We go, ride some rides and meet some really nice people. Chat a little bit, etc, etc. Then it hits me, some of these people adopted a child with Down Syndrome….. they CHOSE to have a child with Down Syndrome in their lives. Don’t get me wrong, I love Malix like crazy. But when he was born, I would not have chose for him to have Down Syndrome. The fact is I knew nothing about Down Syndrome.

Kulczewski Family takes on Disney world!

Fireworks, more Mickey and the day is over. Then Thursday the retreat starts. From now on, I’m going to throw out the order and just try to process it.

We have a decent group of families (20). It seems that a few of us are new to the Dream Retreat group. Being new never bothered me, I always kind of like it actually. There is a group of guys that all know each other, not like just know each other’s name, but have nicknames (mine is Topps), laugh together, etc. Who the hell are these guys…. how do I get in this club… how on earth are they having so much fun… how are they so relaxed?

So here’s the huge light I saw. Some of these guys had very similar experiences as me, found out, got pissed, accepted, etc. But no one, no one were still pissed (at least they didn’t show it). These people are having fun, there is literally no worries.

The retreat was amazing. Our entire family now has life long friends. There were events for just the dads, just the moms and then a couple’s night out. It was like hanging out with lifelong friends. All the kids loved it too. Lydia ended up staying in a friends condo 2 of the nights! All of us were sad when it was over, but excited for the next dream retreat!

Getting to know these guys I learned a couple of facts. 1) they actually care about each other 2) they don’t judge how great of a night by how many drinks they had 3) Some of these guys Choose to adopt a child with Down Syndrome. They (and their wife) made the decision to adopt specifically a child that has Down Syndrome. 4) Most importantly they are there to support each other.

Support. A word that we hear, but rarely really break it down. I know for a fact, that I now have a group of fathers that have a child with Down Syndrome, that are there for me. Such a huge change from the family we had for dinner in 2016.

So many times in life we can make a huge impact on others just by being their friend and relating to their experiences. Passing on this opportunity is really missing something. Flat out telling someone you won’t associate with them because they are going through something you went through is shameful (in my not so humble opinion).

I’m just thrilled I met a group of Dreamers that know this is not an opportunity to pass. They see the value in being there for each others, and truly being part of the Tribe.

3 choices, 1 big decision.

Let’s get caught up. Malix has been in this world for 24 hours, Cubs have won the first World Series in 108 years and now we are off to the NICU.

My memories of the NICU in Madison after birth are faint. All I remember is waiting, waiting for bad news. The funny thing is, we never really got any bad news. There was no TV in the room, so no World Series parade. The biggest event I “missed” was coverage of the 2016 Presidential Election of Donald Trump on Nov 8th.

Thursday November 10th comes and they say we can go home. The entire time in the NICU the concern was Malix’s oxygen level. Apparently his number should be 100, he was constantly around 90. I remember it being really strange they wouldn’t let us go earlier. We knew he had heart issues, so I’m just wondering why I can’t get home. This was an interesting time in our family.

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Kulczewski Family, November 2016

Baby born, awesome. Michelle needing to take a very long leave of absence from work, not awesome. Don’t get me wrong, I think having a parent take care of a child is amazing, I just had no idea how we were going to afford it. In a previous entry, I metioned the idea of selling baseball cards on the Internet, specifically Facebook. This is when it really takes over as a blessing to our family and changes everything, because everything had to change.

A few months before Malix’s birth, I created a business, officially named Fort Cards and Sports Collectibles, LLC. I knew of some guys that were buying boxes and cases of baseball cards from whole sellers and selling them online. I needed to find a way to make some money to cover Michelle not working. So, let’s roll. I started to do “breaks” a couple nights a weeks. Basically I take a case of baseball cards, sell the teams, then open the cards and everyone gets the cards from their teams.

After getting home from the hospital, having Malix at home was almost just like our other 3 children. Babies eat, sleep and poop. Simple right 🙂

Our plan was to have Malix’s AV Canal defect repaired around May. Google does a much better job describing AV Canal defect than I can, but basically it’s your 2 walls in a heart are missing. They “started” to form with little “nubs.” The doctor needs to build a couple walls from the nubs. Apparently AV Canal defects are pretty common in children with Down Syndrome.

Christmas comes and goes and then New Years. We notice Malix sleeps a ton. Then it’s time for a heart doctor check up. All things change with that. Our Doctor has always planned on May, but now it’s go time, and it’s only Mid January, Malix is only 2 months old.

Grandma Peggy Kulczewski with Santa Malix, December 2016

We check into American Family Children’s Hospital in Madison, WI. More tests, Malix needs to keep eating, monitor him, etc, etc. The we go meet with the Doctors. Big news, not good. Malix does have an AV Canal defect, BUT it’s “unbalanced.” This means his nubs are not 50/50 for the walls to be put in. How far off are they? The surgery can be simple right? Not at all.

It turns out an Unbalanced AV Canal defect is super rare. Our Doctor has done it 4 times. He’s done thousands and thousands of surgeries, but what we need only 4!!!!! We get a crash course and apparently there is no Doctor in the US that does this all the time. I have always trusted and really liked the surgery. His real name is Dr. Anagnostopoulos. He goes by Dr. A, good for me.

After all the prep, we are ready to meet, January 23, 2017. Dr. A, in a very serious meeting gives us three choices. 1) do nothing, Malix will die in the next few months 2) Have the “safe” surgery, give Malix 1 chamber. Without further advancements in technology, Malix will likely live no more than 10 years. 3) Go all in. Do the full repair. This does have the greatest chance of not making it out of surgery, but if successful, Malix’s heart will have a chance for a true lifetime!

The meeting still seems so surreal, so serious, so huge. We only felt there was one option, #3. Let’s go all in. We are given a piece of paper to sign, then surgery can happen on January 25, 2016. Meeting done, Michelle stays with Malix, I go back to work.

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.

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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.

But it’s the World Series!

Thank you for checking out my blog of our adventure! The previous entry left going into to fall of 2016. Quick Recap: Baby is going to be a boy, Trent is going into 2nd grade with a broken leg, Lydia is going into 1st grade and Matea is entering 4K. All in the School District of Fort Atkinson, where we just purchased our “forever” home in the spring.

We were expecting our 4th Child, but this was nothing like the previous 3. Our son was already diagnosed with a Major Heart Defect and was most likely to have Downs Syndrome. Our focus has completely shifted to the Heart, I frankly didn’t have the mental capacity to even process having a son with Downs Syndrome.

We were officially a High Risk Pregnancy. Meaning a ton more Doctor visits (now 45 min away in Madison, WI, instead of 3 minutes away in our small town. We also came to the realization that Michelle would have to take an extended leave of absence from her job with the son. Being newer in the district, she had limited sick/ vacation days. Meaning she would need to take many unpaid days off of work. Big Problem: we just bought a house and need the money.

I like to think of myself as a solutions guy. I knew we needed more money. I was working as the Director of Buildings and Grounds for the School District of Fort Atkinson, I was a salary employee, so overtime pay was not an option. I looked at different Part Time opportunities. The issue is that my full time job was an on call 24/7 job. Traditional Part Time employment was not going to work. I have a Masters Degree in Business Management and thought maybe I could put that to use. I did find an opportunity to teach night class at Madison Area Technical College. I was hired! Starting in January, every Tuesday night I would teach a business class. This opportunity was great and I really enjoyed teaching this class and another class in the fall.

We still needed more income for the fall, the teaching was not until January. What do I know? What are my hobbies? What could I be good at? I kept thinking there was some way to make a few dollars a week with baseball cards. Yes, baseball cards! I was (and still am) apart of many Facebook communities that buy/sell/trade baseball cards. In interactions with other collectors online I met a guy from Minnesota, Ryan Holland. I never met him in person, but we (with a few others) decided to start a Facebook group to do baseball card breaks! This was all because our son needed our family to change. Little did I know what road this would lead me to. So much more on this in future posts.

Back to our son, let’s give him a name…. one night after dinner Michelle and I were sitting around the kitchen table discussing boy baby names. I knew names from Chicago Cubs players was out of the question. I am still very proud our dog is Wrigley, though. One name I always liked was Malik, I just was never sold on it. So in discussing I brought up Malik to Michelle. Lydia just happen to be in the area and said “Baby’s name is Malix.” We looked at each other and said, “Yes it is.” Simple as that, he’s now Malix.

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1st day of School in 2016. Matea is looking a bit sad to go to 4K.

Michelle and I thought it would be best to schedule a meeting with Trent and Lydia’s teachers together and share with them about our family changes. We knew Malix would have an heart issue that would need corrected. We did not know if it would need corrected immediately after birth, a week after birth, a month after birth, etc. We knew Malix would most likely end up in the NICU when born and his stay would likely be longer than a traditional night or 2 before coming home. So, let’s let our kids teachers know, what could be bad about that.

I can remember this meeting like it just happened. Michelle and I met right after school with both teachers in a classroom. Just the four of us. I was running around for work and squeezed this meeting in between work meetings. Michelle started out. Thanked them for coming, thanked them for a great start to the school year, yada, yada, yada….

Then it gets to the point to telling them about our family. I think it’s very important to remind you that neither Michelle nor I were from this small town, we knew no one outside of work, we were the family no one really knew.

Michelle shared that she would be gone for an undetermined amount of time due to the birth of our son. She then shared that our son has a heart defect that would require surgery and that there were many unknowns. That this point, I am expecting any person in this meeting to look her in the eye and say something along the lines of: “I’m sorry, if there is anything I can help, please let me know.” That is what anyone would expect to hear.

Instead this is exactly what the teacher asked: “What caused this?” I was shocked and really upset. I finally decided to speak and said “It doesn’t matter.” I was clearly upset at her immediate question, in fact, I excused myself from the meeting before I said something I would regret. I’ve struggled with this meeting for many years afterwards and I think I will always struggle to understand how someone can be so selfish in life they have no sympathy for you or your family. I shared this meeting with others at work, remind you I work in the school district. I was shocked and disappointed to hear the same phrase over and over again: “that’s just her.” So we should let people treat us like that because that is who they are?

Moving on, because clearly I need to 🙂

Malix was breech, we were preparing for the C-section on the morning of November 2, 2016. November 1st, we had a big dinner to celebrate the family changes. Present were Michelle’s mom (Kim), Michelle’s Aunt (Joy), and my mother (Peg) who came between chemo treatments. There is nothing, that would stop my mom from doing what she wanted to do!

November 1, 2016 Dinner was finished and I was watching only 1 thing… GAME 6. My Chicago Cubs were in the World Series!!!!!! Game 6 was a must win to go to Game 7. I was praying that the Cubs would win the World Series on the day our son was born! Michelle was upstairs packing and it’s the 3rd inning. The Cubs took an early lead and now were looking for more. This is a MUST WIN, I CAN NOT MISS this game. Addision Russell is up, bases are loaded. Cubs are up 3-0, 1 out. All I hear is Michelle telling me her water broke, and we need to get to the hospital NOW.

Hospital is 45 minutes away! Baby is Breech! Oh, Addison Russell just hit a Grand Slam! Cubs up 7-0, but it’s still the Cubs and I’m guessing they will blow it. We need to GO NOW! Michelle get’s into the car, I take the wheel and it was the fastest ride from Fort Atkinson to Madison in the history of car rides. We need a C-section, we may need heart surgery right away, we still have a little “hope” the baby does not have Downs Syndrome. We get to the hospital in great shape, baby still wanting to come, rush to surgery, I’m outside the surgery room, Cubs are going to Game 7, clock strikes Midnight. My son is going to be born today, the same day the Cubs may win the World Series! All is going to be great, what if it’s it not. What if Malix needs immediate surgery? What if his little heart doesn’t make it? What if I miss game 7? (I’m kidding, I never thought that)

It’s a Boy! Congratulations??

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:

Then we had the call. You can read about it here:

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.

Celebrating the blue balloons of a new baby boy!

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.

God Gives you more than YOU can handle!

This week in a grocery store, I overheard someone say to another “God doesn’t give you more than you can handle.” This reminded of a Facebook Post I wrote February 11, 2017. After writing this, I had some very in depth conversations with others. Funny how I thought at the time we had a huge local support system. We did, but we realized it wasn’t big enough, one of the main reasons we moved 17 months after writing the below to be near family and friends.

'A huge "Thank You" to @[1559436329:2048:Andrea Muthig Nuss].  Andrea had the below bracelets made for Team Mighty Malix. 
Since wearing mine, I have had time to reflect on what this bracelet means to me.  At first I saw it as support for Malix.  But it's so much more than that.
There is a saying that goes something like this: "God doesn't give you more than you can handle."  This bracelet symbolized that many times God does give you more than YOU can handle.  In times like this is when you need a support system.  To me this bracelet symbolizes that God gave us more than we can handle.  That is why we needed team Mighty Malix.  This bracelet symbolizes that a 3 month old going into heart surgery needs prayers, thoughts, support!  It symbolizes that many people around the world are going through things they themselves can not handle.  We need each other, just like Malix needed and continues to need you.  

I encourage you, next time you see or hear of someone dealing with an issue, let them know you are on their team and they don't have to deal with it by their self!  Don't tell them "God didn't give you more than you can handle"  This is telling them they need to be able to handle it all themselves.  Tell them you are on their team and that is what God, friends and family are for.  We are here to pray and support for each other.

Please pray and support others with Heart Defects as this week just so happens to be Congenital Heart Defect Week.  We have met some other amazing families that are going through similar things.
As for a Malix update, he continues to make progress.  We have a Echo reading on his heart Monday.  That is a very important day.  He is closely monitored.  We have always been told we will experience highs and lows.  Fortunately for Malix, his lows have been very minor.  With that in mind, we are aware there could always be lows around the corner.  This next 6 months will be very crucial.

Lastly, we are so very appreciative for our family and friends.  We are so fortunate to live and work in Fort Atkinson, WI.  This town and  School District is simply amazing.  Many work places talk about how we are together and how family is first.  The School District of Fort Atkinson and it's people show it.  What a great place to be!'

“A huge “Thank You” to Andrea Nuss. Andrea had the below bracelets made for Team Mighty Malix.
Since wearing mine, I have had time to reflect on what this bracelet means to me. At first I saw it as support for Malix. But it’s so much more than that.
There is a saying that goes something like this: “God doesn’t give you more than you can handle.” This bracelet symbolized that many times God does give you more than YOU can handle. In times like this is when you need a support system. To me this bracelet symbolizes that God gave us more than we can handle. That is why we needed team Mighty Malix. This bracelet symbolizes that a 3 month old going into heart surgery needs prayers, thoughts, support! It symbolizes that many people around the world are going through things they themselves can not handle. We need each other, just like Malix needed and continues to need you.

I encourage you, next time you see or hear of someone dealing with an issue, let them know you are on their team and they don’t have to deal with it by their self! Don’t tell them “God didn’t give you more than you can handle” This is telling them they need to be able to handle it all themselves. Tell them you are on their team and that is what God, friends and family are for. We are here to pray and support for each other. ”

Tom Kulczewski. (2017, February 11).

The Call

August of 2016. We have been in our house in Fort Atkinson for a few months. We knew our unborn child had some heart “issues” and were made aware that there is a chance this issue was connected to him having Down Syndrome. I was in complete denial that could even be a possibility. I was born with Atrial Septal Defect (ASD) of the heart. Basically, a small hole in the heart. When I was two years old, I had a surgery to correct it. ASD is quite common and “easy” for a heart surgeon to repair without any further consequences. I was later told it’s the “best” heart condition to have.

With all our kids, we did an extra ultrasound with a heart specialist. I believed having a child born with ASD was a very real possibility. That really didn’t scare me at all. I basically looked at it as no big deal. When our son was identified as having a heart issue, I convinced myself it was ASD connected to me having an ASD. Nothing else genetic. Nothing else.

We had a few heart doctors that believed the baby could have Down Syndrome. I completely removed this possibility from my thought, there is no way the child could. It had to be related to my heart issue and it is no big deal. We had a Doctor suggest we get a blood test to find out for sure. This test would confirm what I knew already. Michelle went to St. Mary’s hospital in Madison for this test. I was to busy with my work to go with her. I knew it was not big deal anyways, just a routine lab work. We would get back the result I knew we would and we could move on with our disrupted lives.

When we moved to Fort Atkinson 2 years earlier, we had a fantastic dog, Fiona Sadly she died of cancer a few months before we moved into our house. A week after she passed, we got Rosie. She is a little dog full of energy. In Late July of 2016, we decided our life wasn’t full, so we got Wrigley. They are both rescue dogs and they are still with us. I love them dearly. We got Wrigley on Sunday July 31, 2016. Life was smooth sailing. Everyone was healthy, I was in complete denial that anything could be wrong with our baby.

Welcome to Monday. Monday, August 1st, Michelle received a call for a job offer. She was offered (and accepted) a Full Time position with the School District of Fort Atkinson as a Counselor. Things were really starting to work it’s way out for a smooth transition and to settle in.

As a typical Monday I was very busy at work. Michelle tried calling me several times, my phone did not pick it up, or I ignored it. Either way, I don’t remember. Finally she reached me and there was screaming on the other end. Trent (8 years old) was on his scooter going down a hill. He stopped and his scooter swung around and hit his lower right leg. The scooter gave him a huge “spiral break” in his leg. By the time I raced home, he was already off to the hospital and received a cast from above his knee to his toes. Just in time for our summer vacation to Northern Michigan to go swimming, hiking, etc.

Tuesday went by and I frankly forgot about the blood test Michelle had the week before, then Wednesday….. August 3, 2016.

It’s funny in life you live so many minutes, but remember some like they just happened. Our wedding, our kids birth and The Call. I pulled up after work to our home. Excited to see the kids and play with the new dog. Michelle was on the front porch, on the phone. She hung up and said directly to me “Our Baby has Down Syndrome.” I only said one word “F—.” That is it. Threw what I was holding to the ground and started to cry. I thought at the time this was the worst news a person could get. I frankly had zero positive thoughts. Why me, why us? Our life was really getting on track and now this will ruin our life. I never imagined how wrong I would be and had no reason to be upset!

The reason write this is mainly to speak to someone who is going through this or knows someone who is going through this. Fast forward 3.5 years, if I knew what I know now, my reaction would be 100% different. Having a child with Down Syndrome is the biggest blessing a parent could have. I AM THE LUCKY ONE. I’m not saying that to convenience myself, but to share with you. Our son is amazing and our life was so incomplete without him. What we would learn about Down Syndrome is life changing.

I look forward to sharing our journey. There are so many bumps ahead, the Doctors, the Birth, the Heart, the Job, the business the Move(s)…. Then there is my mother fighting ovarian cancer in 2016 for almost 2 years.

Thank you for reading.

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Trent and I with Coach Paul Chryst 6 days after he broke his leg. I became a huge Badger fan this day.

Everything is going to be fine, what if it is not?

July of 2016. We just moved into our “final” house in Fort Atkinson, WI. It is a great house, 3 bedrooms for the kids, finished basement, awesome backyard. Michelle was pregnant with our fourth. We took the 3 kids to the ultrasound as a celebration to “see” the baby and to get excited!

It was a Wednesday, I was very busy at work, but took some time to drive to the hospital. There was Michelle and our 3 kids. Michelle’s parents were nice enough to help bring the kids. In fact, her parents helped a ton, even thought we were 1.5 hrs away.

Michelle laid down and we were all excited. We didn’t want to know boy or girl yet (that was for the reveal party). We just wanted to see our very healthy baby growing! Then the tech started. Showing the feet, the hands, etc. All the fun stuff we were all excited about. Then the organs, and the heart…… long silent pause….. why is she taking a million pictures of the heart….. why is she looking worried.

We ask if everything is ok, She didn’t need to speak to tell us no. Just a simple lie is all she could get out. Something to the effect of that she just wasn’t getting good pictures. I’m not a poker player, but her words were not fooling anyone in the room. We knew something was wrong. We could hear the heart beat, we could see it moving, so why isn’t she (the ultrasound tech) smiling?

She kept leaving the room and coming back looking at the heart. She would not answer our questions, just that she was getting more pictures. Why more pictures is what I wanted to know.

Then it ended, our session was done. Nothing but simple words that our Doctor would be in touch. That was it. We knew something was very wrong. Then just like that, I’m back at work. Don’t get me wrong, I loved my job in Fort Atkinson, I loved who I worked with. Quitting that job is for another post, maybe multiple posts…

The next day went by, no news. I remember not sleeping much. Lack of sleep is something I was going to get use to. I was excited for Thursday night. By far and away my favorite thing in Fort Atkinson was slow pitch softball on Thursday night. I am not a good player by any stretch of the imagination. But for that one hour a week, I had friends outside of work. I will be forever grateful to that group of guys who were so sincere to me and listed to me for the months to come. We played for 1 hour, celebrated for a few after the win or lose. Winning the championship the next year was pretty awesome, but being able to talk our issues coming up was very helpful. Having people that listen is huge. Not tell you how it’s going to be ok, not tell you their stories, but just listen.

Then we packed up and hit the road for a Family Reunion in Southern Indiana. The Doctor called Michelle when we were in the car. There were concerns with the heart and all our treatment was being transferred to University of Wisconsin Children’s Hospital Pediatric Cardiac Unit in Madison. That was it. Time to try to enjoy a vacation.

I loved the family reunion, in fact, I’d like to go back to it. But it was horrible to let your thoughts wonder to what is going on with our 4th child who was due in just over 3 months.

We live in a small town, know almost no one, related to no one, have very few friends outside of work. What are we doing? We just bought an awesome house, we have an awesome family, but maybe now we don’t. Our child was going to need us, need us to be strong, need us to be brave, need us more than I ever knew someone needed someone. Our child was going to need us to fight for his life as we are going to be asked several times by Doctors if we wanted to abort our child. Being told by Doctors it’s ok to have a late term abortion. (much more on this later) He’s our child and he’s going to be great. But what if he’s not going to be great? What if everything isn’t going to be just fine?

Thank you for reading and letting me reflect. Please subscribe for e-mails when our journey is updated.

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Matea and Lydia excited for the new baby in Summer of 2016.