Amy and Andy’s Story

Site created on July 3, 2019

Welcome to the Van Sistine's CaringBridge site. We appreciate your support as we do everything we can to keep Lucas at home with his family.  

Under the "Journal" section you will find the story of Amy and Andy's journey with Lucas.  Please also visit the "Ways to Help" tab, where you can make a GoFundMe donation that directly helps Amy and Andy with their most urgent financial needs to help keep Lucas at home with his family.  There are also links to learn more about donating iPads and joining a helping hands text group. If you are willing to offer your time, the SignUpGenius link has options to bring them dinner, have a playdate with Violet, help Andy with household chores, and more.  Volunteering to be a helping presence in their daily lives is instrumental in helping lighten their load.

If you have questions about signing up to help, making donations, or anything else, please don't hesitate to reach out to Kristina for assistance - kristinabruggeman@gmail.com. 

 * Please note that any donations made under the "Tribute" section are greatly appreciated, but they do not go to the Van Sistine family.  Donations made under the "Tributes" section go to CaringBridge to help run the website. To make a donation directly to the family, please use the GoFundMe link under "Ways to Help. *

Newest Update

Journal entry by Amy Van Sistine

Good Wednesday morning! 
It's national cat day, who knew
The day before halloween - but milwaukee area has already celebrated on the weekend and it doesnt really feel the same for tomorrow
and change is a foot! 

I had a lot of time for reflection yesterday as i caught up with some of my own self care - finally had time to see the doctor for a refill on some anxiety meds.  I haven't seen this doctor in a while - maybe 8 months or so.  He asked the regular questions, but this time i didnt have the same old answers.  Lucas' condition hasn't changed.  Which stability is good and hope for improvement is no longer central to our lives.  I could tell my doc was a little surprised by my light hearted recounts of Lucas' middle of the night antics and the fact something is broken every day, and caring for him is still hard.  We had a 4 day weekend this past weekend and yesterday i was SO ready for the kids to be back in school.  

Now if i list off all the hard things as an answer to "how are things" my answer would be true but certainly not a good way to live.  By answering with the ways in which things are good, how i've changed as a person and now i can answer the question with the positive aspects of our lives and know that i'm not glossing over the hard, but specifically choosing the positive.  When i was talking to the doctor and giving my little update he seemed surprised how light hearted i was and truthfully i was a little surprised. This is what led to my self reflection.

Non permanence:
I'm a double major in philosophy, a minor in theology and a master of science as a licensed professional counselor.  The question "why" is as fundamental to my very being as breathing.  A person like me with a child with a serious idiopathic medical/developmental issue has led to unending existential struggle.  I know it sounds dramatic and philosophy really is a struggle.  What i have found most useful is borrowing lifestyle and thought patterns from Buddhism, specifically on the notion of suffering.  An understanding i've come to is that life is perpetually non existing - it is only the very moments of present that actually exist, and i have full control over how i exist in this world with the things going on around me.  

So what something really difficult happens - and i'll look back specifically to the first 4 years of Lucas' life - there is suffering.  The memories i have of his infant months is of a child who was inconsolable, quick to frustration (even for a baby) a non sleeper, an eater of all the things food and not food, and perpetual worry.  At the time i knew that this would be a hard way to remember my baby and i focused so much on photography that he ended up becoming a boutique model.  I needed the photographs so that i could see how sweet and cute and lovely he was and not be overwhelmed by the negative in the moment.  

18 month old Lucas doesnt exist anymore.  That is factual *he's 8 year old Lucas now.  The experience of 18 month old lucas is only in the memories of those who interacted with him, and possibly his own memory.  That little boy is not in existence, that Amy is not in existence, nothing of that time is "real" anymore - its all past experience.  So i can't do anything about it - and WOW am i glad to have the photos as a positive reminder of how sweet he is and was. 

So what does any of that have to do with right now?
In the way that 18 month old Lucas doesnt exist, neither does yesterday.  Yesterday no longer can be altered, changed, realigned, reassigned, redone - it's gone - it no longer exists.  The IMPACT of yesterday can still be real and present but yesterday itself is gone.  So how can i influence where i am and where i want to be knowing that the present moment is the only platform on which i can have any influence?  How can i influence when i know the things outside of my control are so much bigger than that within my control? How can an already anxious person NOT WORRY, NOT PANIC *i have my towel and 42 bonus points to those who got the reference* And how can i still be the parent i wanted to be when i have a child with a disability and that is significantly off my plan of what my parenthood would be.

Lucas breaks something every day.  It's inevitable.  Yesterday it was a cute waterglass from the 80s with strawberry shortcake printed on it.  Violet was bummed and knows that means the next time i see a cool glass for her, ill pick it up.  I'm trying to instill in Violet that using our favorite things and only having favorite things or things that bring us joy is such a more fulfilling way to live.  I usually only need to buy 1 glass at a time - so why focus on having a boring set?  I'd much rather swing by the goodwill and pick up something individual and unique and that i love (or violet will love) as our time with the item is of unknown length of time (i have had the broken item of the day be the purchased item of the day - that's always a rough one lol) We are not for want of water glasses, and when you open our cabinet there are no 2 alike, and every single one is my favorite.  I can't tell you how fun it is to always have a favorite glass ready for you.  Getting to this point wasn't expensive (i buy almost everything used - its literally going to be broken at any time so i can't be replacing things with new as i would never be able to afford it) My surrounding myself with favorite things has meant that very little is irreplaceable.  A cupboard filled with favorite glasses means that i will always have my favorite glass at my fingertips.  How it looks might change but i always have a favorite glass.  Breaking things is a little fun too because that means there is a new favorite glass waiting for me to find it out there!  Surrounding myself with my favorite of everything has helped reduce my consumerism too.  I have 1 dresser of clothing.  Everything fits, everything is appropriate for daily wear, i love everything in my drawers and if i find something i love more - i rotate it in and donate the piece of clothing that is either worn out or just less my favorite than the new item.  Again - i'm a goodwill junkie on clothing so again, easily done i just need to make sure that everything can be made in to an outfit (i tend to love shirts and never have appropriate pants lol) 

So how can the non attachment to physical items, the purging to be as minimalist as possible and still have what i need at my fingertips and the only time is now, how does this all roll together and didn't i mention cats in there somewhere?  

So just like with "things" i'm surrounding myself with making my moment by moment very pleasing to always be using the good stuff, the favorite stuff - i'm really working on making the present my favorite.  How can i interact with my present - the only thing i have any influence over - so that when its not longer something to be worked with an altered - my memory of such is one of joy and not of misery, not of suffering.  How do be joyful during moments of crap? 

First off - nothing is permanent.  Some things happen over and over again every day until they dont - somethings happen a lot that are hard - but these events aren't permanent across time.  Hard things happen all the time - but it can be your choice to feel miserable or not.  

Violet very much enjoys art, and art supplies, and experimenting with them - including drawing on her face.  Not cool violet, not cool.  So as a parent i could be annoyed (it did take a long time to clean up) i can mention that perhaps face is not the the best place for drawing and redirect her, which i had to do any way - and i could see how its funny.  Its one of those things that in a week it would be funny - but why couldnt it be funny right now? My goofy daughter invited me to share a moment with her that i chose to be a fun moment.  I still parented - it was kinda funny - it was also a pain in the ass to get her cleaned up - but focusing on the funny made my evening of de-markering much more fun (she got her bedroom wall too) I made a joke about the colors she used -  she drew (a quite good) baby shark on her wall too - the obsession is real folks.  I could be pissy and annoyed and then when i can't do anything about it that moments slips from existence to memory.  I'm happy I chose in the moment to find joy - because now i only think of it an laugh.  By specifically finding "my favorite" or the best parts of any experience, or the parts you want to long lasting - then you can specifically create a present that will result in you having a past that you like and love.  It really has little to do with what is actually happening and what you are willing to spend your time on. 

The more and more i do this - the more and more i am specifically creating a present that will be positive so when it no longer exists but in my memory - it will be a happy place and time.  That doesn't negate how ridiculously hard things are - but it does give much more weight and memorabilia to the good than the bad. 

So what about this story of 6 cats i was talking about yesterday?? 
Well i didn't know today is cat day, which now i do and makes me feel all that more impassioned about the cat factor.  For those of you who knew me pre Lucas probably remember Mr Cat - my little orange guy, loving to a fault, stupid as a box of rocks, adventurous in annoying ways and a big fan of eating anything made of rubber including shoes and erasers.  Mr cat was the perfect cat - loved everyone and every thing - obsessed with Lucas and so tolerant of his little baby behaviors.  Mr cat was a gem! 

We had penny as well.  We had her for less than a year when she developed a ruptured abscess and died of sepsis.  Despite my own sadness Mr Cats grief was so loud and disruptive we adopted another cat 2 days later, and she was the same size and weight as penny - petite, loving, and just looked like Penny but dunked in an ink well. Her name Millie was actually from a tv show Dead like me - a girl named Georgia dies and is then a grim reaper - and she needs a job and new identity so she becomes Millie (this cat seriously looked like penny she was just pure charcoal grey) She started out a little timid but loved our little family.  She was wonderful with Lucas as a baby and Violet.  

As Lucas' needs increased our ability to have the cats was significantly in jeopardy.  Mr Cat would rub up against lucas so much that he'd knock him over, Violet was terrified of Millie - and in October 2015 we gave them both up for adoption.  they had done nothing wrong, i didnt love them less - Mr cat was at huge risk of being injured or injuring Lucas.  I remember while surrendering them that i shouldnt surrender Millie.  I was so torn that i mr cat was the problem and i loved millie so much and i felt terrible to keep one and give up the other.  Both cats were rehomed.  It broke my heart. 

I said to Andy with grief and an overwhelmed heart that our family and circumstances were so messed up we couldnt even have cats and how sad and awful that was.  It is really depressing when life is so hard you cant even have your two loved cats. 

4 years have passed, Violet loves cats now (thanks kid - you could have had millie all this time) Lucas is much better at not tripping on animals and the bunnies have done well to keep themselves safe in spite of much 8 year old gazelling.......and about a week ago i had the urge to look on the humane society website.  *this is not unusual for me to get a thought i should do something and then just look for fun.  However, this time a little lynx siamese 1 year old kitten looked at me from my ipad.  I mentioned it to Andy.  He knew what was coming (i rarely am really enthusiastic about cats, i just love MY cats and the cat of people i know - typically its like awww cute cat and i move on with my day) This one though - i kept telling him how cute she was and her stats and had him look through and he picked her out too as being something special.  Violet and i went to the "cat zoo" and came home with a friend.  Violet was too shocked to be excited - i was over the moon.

So miss Magnolia joined our family - named as a nod to my enjoyment of flower names and my favorite movie.  I found out after i committed to adopting her she was one of 65+ cats rescued from a hoard early in the month.  After a day of near constant petting and treats she was showing very few signs of cat trauma.  and i was in love. 

Then came vermont.  So vermont is also a lynx siamese, also from the hoard, also a petite adult cat weighing in at 5 pnds, looking just like magnolia (their photos are near identical) and i thought omg i want you too.  And this was on a Tuesday and she was in green bay - it was just not something that looked like it would work out.  I told andy if she was still there saturday i would go and would likely be coming home with her if shes even 1/2 as sweet as Magnolia.  All week i stalked the website - she was still there.  There was a 3rd lynx siamese - Utah, aged 2 years, 5 pounds, looking terrified.  Utah wasnt doing it for me. So Saturday morning i made a quick trip to Green bay - Vermont was NOT the cat for us.  I asked if she wanted to come home with me and she yowled something that sounded like no and then hid in the corner.  I was confused and heart broken.  I thought what the hell, im here, lets see utah. And she was the cat i should have been looking at all along.  Super affectionate, near twin to magnolia, not a lot of meowing (vermont would not shut up) and just sweet.  So with that home came Utah.  And out for halloween we went! 

I was thinking about names and Magnolia and that they were probably both a year old as this cat is near identical to the one from the week before.  And that is how Miss Magnolia lost her name.  Magnolia as a nod to Steel Magnolias became Ouiser *wheezer - 20 years to realize it was because her name is Louisa and Utah became Clairee.  Two hilarious best friends in a hilarious sweet movie.  

2 cats in our home.  2 happy cats, 2 happy kids, 2 happy adults, 2 ambivalent bunnies - but 2 cats in our home.  I think we are past all the hard hard hard suffering and we are on the brink of a new life and new attitude and new journey.  This will work until it doesnt - and i will enjoy every day  because the only thing we have is this moment - might as well smile and increase your face value 

<3 with lots of love and gratitude 
More updates about Lucas specifically to come - this entry seemed important to write first! 
~amy
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