Malix

“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.

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.

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.

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.

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.

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.

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.

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)

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 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). https://www.facebook.com/tom.kulczewski/posts/10210121683933308

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.