Keeping Him Home - Andy and Amy Van Sistine
Donation protected
This is the face-slapping truth of life with Lucas VanSistine.
As a baby, Lucas frequently posed in front of the camera, proudly displaying Amy’s homemade creations. His joyous laughter was the best advertising she could have hoped for when marketing Silly Sea Turtle clothing. At some point in that first year, Amy and Andy knew something wasn’t quite right, but doctor’s disregarded their parental intuition and labeled them as “just new parents”. When he started missing key developmental milestones, the investigation began. MRI’s, bloodwork, EEG’s, Urine work, genetic sequencing, body scans, a round of testing at the Mayo Clinic, and consultations and examinations with countless doctors failed to yield a diagnosis. Lucas has a plate full of symptoms, but they don’t make up a meal. Diagnosis: Unknown. Without a clear-cut diagnosis, there is no straightforward medical care plan. A cure, a stable regimen, a vision for the future - they are all out of reach.
And so for the last 7 years, Amy, Andy, Lucas, and his doctors have managed Lucas’ symptoms as they manifest and evolve, running through a dark tunnel at full speed. In many ways, Lucas is like a baby or a toddler. He does not speak, sign, or otherwise communicate. He cannot fall asleep without Andy or Amy by his side. He watches Mickey Mouse on an iPad over and over and over. He becomes physically violent when frustrated. He does not sleep through the night. He is not toilet trained. He may wake for the day at 3am. He cannot dress himself. He does not use silverware. He moves with awkward and sometimes uncontrollable movements. He eats things that he shouldn’t. He delights in the splash of bath water. In an average day with Lucas, Amy will find herself sprinting down the street in her pajamas to catch him when he unlocks the front door and takes off. In an average day, Andy will spend the morning cleaning up after Lucas has emptied the compost and recycling bins in the night, strewing the contents around the house. In an average day, Amy will field numerous frustrated phone calls, emails, and notes home from Lucas’ school about the chronic reflux that makes him vomit, his behavior, or his chronic diarrhea. In an average day, Lucas will raid the garbage can and the refrigerator, eating full sticks of butter and entire packages of tortillas before painting the couch in sour cream and dumping a box of cereal around the dining room. In an average day, Amy will rush Lucas to the emergency room after he’s eaten a toy or a poisonous silica packet. In an average day, Lucas will eat the poopy contents of his diaper, smearing feces on his face, his shirt, the furniture, and the floor. In an average day, Amy and Andy will strip, scrub, shower, dry, and redress Lucas after fifteen poopy incidents. Life with Lucas requires mind-bending diligence.
Frolicking in the wings while this drama plays out is Violet. Feisty, spunky Violet. At 4-years old, Violet has had to learn to constantly be on-guard for whatever Lucas throws her way. She’s had to be content to paint at the kitchen table by herself while her parents clean up after her brother’s confusing and unpredictable behavior. Violet is starved for attention and often acts out as a result, reminding Amy and Andy of the burden her 4-year-old mind carries. Time spent focused on keeping Lucas safe is time that is not spent taking her to the park, reading Pinkalicious books, digging in the garden, or visiting the cats and dogs at the shelter. The demands of life with Lucas eat away at Andy and Amy’s other relationships as well, with friends, family, and each other. Invitations are declined, text messages go unanswered, and friendships are strained. Honestly, they have not left the house together, without children, since Lucas was born. The effects of Lucas’ mystery condition are far reaching in the VanSistine family.
As Andy and Amy began to accept their family’s normal, they applied for services from the government. Lucas now has a Children’s Long Term Support Waiver based on his severe disabilities. What this means is that due to the severity of his disabilities, the federal government has waived certain regulations so that Medicaid funds can pay for local services as an alternative to institutionalizing him. These local services are chosen specifically for Lucas and detailed in his care plan. Their main purpose is to give Andy and Amy the support that Lucas needs to keep him living at home with his family. While they provide needed therapy for Lucas and accommodations for the home, they also provide respite for his parents. If Lucas is unable to function at home with the care plan in place, then Andy and Amy would have to move him to a private residential facility designed to meet his needs. The cost of that round-the-clock care would be astronomical and well out of their reach. With all other options exhausted, Andy and Amy would be forced to surrender their parental rights and Lucas would become a ward of the state, living in one of three institutions in Wisconsin.
Currently, Lucas’ care plan is written to include 40 hours/week of intervention, which can be either a full day at school during the school year, or a full day at therapeutic camp during the summer. At the end of school in June, Amy and Andy were prepared to transition him to the therapeutic camp. Unfortunately, on the first day, they were informed that despite the application and medical forms being submitted, there was a glitch in getting the funding from the Long Term Support to the day camp, and the camp was at capacity. Instead of attending camp, he would be spending those 40 hours/week at home. Additionally, due to the severity of Lucas’ disability, in March the family was approved for an additional 40 hours/month of respite care. This provision of his care plan provides a qualified caregiver who can keep eyes on Lucas while Andy and Amy attend to all of their responsibilities that are neglected during the average day. Two key elements of his waiver care plan have been snatched away, leaving Amy and Andy, quite simply, overwhelmed. Summer stretches out ahead of the VanSistine family under a cloud saturated with exhaustion, frustration, and hopelessness. Continuing on in this way, especially this summer, is a burden too heavy to carry. It’s a burden that is far too great for two people. It’s a burden that would otherwise be shared by an entire staff in an institutional setting. But Amy and Andy trudge forward, carrying this burden through the daily chaos because they have no choice. This is what will keep him at home.
They need help. At 7.5-years old, Lucas’ out of pocket medical expenses have already been more than $50,000. The bureaucratic hurricane that the family is currently caught up in means that they are going to have to fill gaps and make even greater financial and personal sacrifices. Please, can you help by making a financial contribution to help this family bridge the gap? While they continue their fight to receive approved services your contribution will be used to:
- Hire private respite care workers during the summer months
- Outsource household chores that they don’t have time to complete.
- Purchase medical supplies for Lucas
- Replace broken iPads and screens to keep Mickey Mouse going
- Install replacement vinyl flooring in the basement play/therapy area where cleaning up bathroom messes on a daily
basis destroyed the carpet
- Purchase and install a secondhand hot tub to provide hydrotherapy at home
Any contribution that you make will be deeply appreciated as the VanSistine family navigates the tumultuous waters of the face-slapping reality of life with Lucas. If you’d like to give of your time and talents, please visit the CaringBridge site for more answers to the question, “How can I help?” However you reach out, you are showing Andy and Amy that they are not alone. We are here to support them. Thank you!
As a baby, Lucas frequently posed in front of the camera, proudly displaying Amy’s homemade creations. His joyous laughter was the best advertising she could have hoped for when marketing Silly Sea Turtle clothing. At some point in that first year, Amy and Andy knew something wasn’t quite right, but doctor’s disregarded their parental intuition and labeled them as “just new parents”. When he started missing key developmental milestones, the investigation began. MRI’s, bloodwork, EEG’s, Urine work, genetic sequencing, body scans, a round of testing at the Mayo Clinic, and consultations and examinations with countless doctors failed to yield a diagnosis. Lucas has a plate full of symptoms, but they don’t make up a meal. Diagnosis: Unknown. Without a clear-cut diagnosis, there is no straightforward medical care plan. A cure, a stable regimen, a vision for the future - they are all out of reach.
And so for the last 7 years, Amy, Andy, Lucas, and his doctors have managed Lucas’ symptoms as they manifest and evolve, running through a dark tunnel at full speed. In many ways, Lucas is like a baby or a toddler. He does not speak, sign, or otherwise communicate. He cannot fall asleep without Andy or Amy by his side. He watches Mickey Mouse on an iPad over and over and over. He becomes physically violent when frustrated. He does not sleep through the night. He is not toilet trained. He may wake for the day at 3am. He cannot dress himself. He does not use silverware. He moves with awkward and sometimes uncontrollable movements. He eats things that he shouldn’t. He delights in the splash of bath water. In an average day with Lucas, Amy will find herself sprinting down the street in her pajamas to catch him when he unlocks the front door and takes off. In an average day, Andy will spend the morning cleaning up after Lucas has emptied the compost and recycling bins in the night, strewing the contents around the house. In an average day, Amy will field numerous frustrated phone calls, emails, and notes home from Lucas’ school about the chronic reflux that makes him vomit, his behavior, or his chronic diarrhea. In an average day, Lucas will raid the garbage can and the refrigerator, eating full sticks of butter and entire packages of tortillas before painting the couch in sour cream and dumping a box of cereal around the dining room. In an average day, Amy will rush Lucas to the emergency room after he’s eaten a toy or a poisonous silica packet. In an average day, Lucas will eat the poopy contents of his diaper, smearing feces on his face, his shirt, the furniture, and the floor. In an average day, Amy and Andy will strip, scrub, shower, dry, and redress Lucas after fifteen poopy incidents. Life with Lucas requires mind-bending diligence.
Frolicking in the wings while this drama plays out is Violet. Feisty, spunky Violet. At 4-years old, Violet has had to learn to constantly be on-guard for whatever Lucas throws her way. She’s had to be content to paint at the kitchen table by herself while her parents clean up after her brother’s confusing and unpredictable behavior. Violet is starved for attention and often acts out as a result, reminding Amy and Andy of the burden her 4-year-old mind carries. Time spent focused on keeping Lucas safe is time that is not spent taking her to the park, reading Pinkalicious books, digging in the garden, or visiting the cats and dogs at the shelter. The demands of life with Lucas eat away at Andy and Amy’s other relationships as well, with friends, family, and each other. Invitations are declined, text messages go unanswered, and friendships are strained. Honestly, they have not left the house together, without children, since Lucas was born. The effects of Lucas’ mystery condition are far reaching in the VanSistine family.
As Andy and Amy began to accept their family’s normal, they applied for services from the government. Lucas now has a Children’s Long Term Support Waiver based on his severe disabilities. What this means is that due to the severity of his disabilities, the federal government has waived certain regulations so that Medicaid funds can pay for local services as an alternative to institutionalizing him. These local services are chosen specifically for Lucas and detailed in his care plan. Their main purpose is to give Andy and Amy the support that Lucas needs to keep him living at home with his family. While they provide needed therapy for Lucas and accommodations for the home, they also provide respite for his parents. If Lucas is unable to function at home with the care plan in place, then Andy and Amy would have to move him to a private residential facility designed to meet his needs. The cost of that round-the-clock care would be astronomical and well out of their reach. With all other options exhausted, Andy and Amy would be forced to surrender their parental rights and Lucas would become a ward of the state, living in one of three institutions in Wisconsin.
Currently, Lucas’ care plan is written to include 40 hours/week of intervention, which can be either a full day at school during the school year, or a full day at therapeutic camp during the summer. At the end of school in June, Amy and Andy were prepared to transition him to the therapeutic camp. Unfortunately, on the first day, they were informed that despite the application and medical forms being submitted, there was a glitch in getting the funding from the Long Term Support to the day camp, and the camp was at capacity. Instead of attending camp, he would be spending those 40 hours/week at home. Additionally, due to the severity of Lucas’ disability, in March the family was approved for an additional 40 hours/month of respite care. This provision of his care plan provides a qualified caregiver who can keep eyes on Lucas while Andy and Amy attend to all of their responsibilities that are neglected during the average day. Two key elements of his waiver care plan have been snatched away, leaving Amy and Andy, quite simply, overwhelmed. Summer stretches out ahead of the VanSistine family under a cloud saturated with exhaustion, frustration, and hopelessness. Continuing on in this way, especially this summer, is a burden too heavy to carry. It’s a burden that is far too great for two people. It’s a burden that would otherwise be shared by an entire staff in an institutional setting. But Amy and Andy trudge forward, carrying this burden through the daily chaos because they have no choice. This is what will keep him at home.
They need help. At 7.5-years old, Lucas’ out of pocket medical expenses have already been more than $50,000. The bureaucratic hurricane that the family is currently caught up in means that they are going to have to fill gaps and make even greater financial and personal sacrifices. Please, can you help by making a financial contribution to help this family bridge the gap? While they continue their fight to receive approved services your contribution will be used to:
- Hire private respite care workers during the summer months
- Outsource household chores that they don’t have time to complete.
- Purchase medical supplies for Lucas
- Replace broken iPads and screens to keep Mickey Mouse going
- Install replacement vinyl flooring in the basement play/therapy area where cleaning up bathroom messes on a daily
basis destroyed the carpet
- Purchase and install a secondhand hot tub to provide hydrotherapy at home
Any contribution that you make will be deeply appreciated as the VanSistine family navigates the tumultuous waters of the face-slapping reality of life with Lucas. If you’d like to give of your time and talents, please visit the CaringBridge site for more answers to the question, “How can I help?” However you reach out, you are showing Andy and Amy that they are not alone. We are here to support them. Thank you!
Co-organizers (3)
Kristina Stewart Bruggeman
Organizer
Milwaukee, WI
Amy Flynn Van Sistine
Beneficiary
Jeri Seabury
Co-organizer