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 thoughts on “We Are The Lucky Few!

  1. Tommy – I’m sorry I wasn’t able to meet up with you guys this trip down. But I’m sooooo very happy that you had the experience that all of you had with this ‘new-found family’. To know that you’re not alone and the fact that you all are safe and happy in this group is the best way to move forward .. taking it day by day and hour by hour if need be on some days. The Shimaultski’s will always have your back no matter what but to know you have found this same support in another way is being doubly blessed for sure. Love you guys! Kathy

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  2. Hi Tom…I am so pleased to be reading about you and your family and your thoughts about life with Malix. Your mom shared a lot with me about your situation and she always spoke about all of you with so much pride. I can see why! I’m proud of you too!

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  3. Tom, I love your latest blog! My first thought was how proud your mom would be. I’m so glad you have had this experience, to be part of the group of supporters. We love you guys, we can’t wait to see you the next time you’re down here.
    Love , Aunt Caroline and Uncle Bill- of Aultski Village.

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