Guest Lecture for the CMU Maternal Child Health Masters Class

This is an event that I look forward to every year; having done this for the last three years. However, thanks to COVID I had to adapt my lecture into a Power Point with voice recordings. I wasn't given much notice for this summer class (normally it is in the fall) so this is what I wound up with. Better than nothing and I'm appreciative of the opportunity.

https://www.slideshare.net/DawnKrause2/willy-life-love-and-beautiful-chaos

Mother's Day. It's Complicated.

Mother's Day can be complicated for many for so many reasons. I've lost a son so I know this firsthand. Ever since Willy passed, my feelings surrounding Mother's Day vary with great disparity. This year I seem to be more reflective than usual about the importance of mothers and women in general. Knowing how Mother's Day can be bittersweet for some, I like to think of it as Women's Day. 

The role of mother and the feelings surrounding it can look different to everybody. There are women who want to be mothers but have been unable to. There are women who choose to not have babies and then get questioned about their decision all the time. There are step-moms and 'second' moms and aunts and mentors who provide mother-like comfort and support. There are single moms who work their tail off to get it all done and sometimes motherhood might be tougher than normal for them. I know single fathers who are doing double duty which can't be easy! I could go on, but you get the picture. I think it's important that we celebrate these holidays but also keep empathy for others on the radar. 

In my personal life, I have been blessed with many strong, amazing women to show me good examples. My mother was a single mom to me and I was not an easy teenager! She let me be who I was trying to be without making me into something different. I have a strong and caring step-mom, and grandmothers, aunts, and cousins. In their own way, they have all made me proud and have been good examples. And it wouldn't be Mother's Day if I didn't give a shout out to Trish, my co-parent mom. She loves the kids deeply and together we work hard to be the moms we need to be, each in our own unique way. 

As a mom, I am grateful for Grant and Gabrielle. (Who is enjoying the nickname Elle these days and I am working to support that change when I remember!) Grant is working full-time plus in Brooklyn, New York at a medical diagnostic lab. He's conquered NYC, pays his own rent, is in a band, and is doing great. All at 18. Elle is a spitfire. Quite a lot like I was at her age which is how I know I was difficult sometimes. She's full of teenage angst and low self-confidence and I just wish I could have a quick conversation with her adult self. I'd tell her that she shouldn't worry. She will be just fine! I also am grateful for four amazing step-kids and three significant others. They didn't have to but they opened up their hearts to let me in and I love them. 

If I take the lens and pan out, I really do have amazing women in my life. My work life is incredibly satisfying and for the most part is filled with female leadership who is supportive of each other. My town is full of strong, amazing women who fight for social justice and look out for the marginalized and do what they can to help lend their support. I've worked with amazing women in Congress to get some advocacy work done and am proud of the female leadership we have in our government and look forward to the day we have our first female president. 

This all is not to say that I don't value the men in my life. I strongly believe we benefit from having both men, women, fathers and mothers in our lives. But history hasn't been kind to women and we are still trying to become equal partners. Nothing gets me more excited than seeing women support other women! 

The role of mom is not simply being a mother. It's supporting, listening, educating, comforting, cheering, guiding, advocating, it's picking your battles and biting your tongue sometimes. It's exhausting. But most of all, it's being an example. Now more than ever we need to show our daughters they can do anything. They are needed and wanted and their role in society is unequivocally necessary. We need to remind them they are 50% of this population! They need to see us do our best. Make mistakes. Be humble. Be strong. Be soft. 

When I think of the legacy I am leaving for my daughter, I know there are areas I can improve upon. I want her to know I tried hard to be a good mom. That there are only so many hours in a day and I tried to fill those hours with hard work, a little fun, and a lot of love. I want her to know it's okay to argue and speak your mind and still know she is loved unconditionally even if we are upset with each other. I want her to find what makes her happy and do it. I want her to remember those who haven't had the chances she has had and treat them kindly. I want her always to remember there are backstories that have led to current situations and those backstories are important. Mostly, I want her to have a joyful heart. 

Mother's Day. Women's Day. It's complicated and I wanted to take a minute to express this. 

If you are a woman in my life, thank you. Thanks for being amazing and helping me to be the best I can be. 

I took a two-year break from blogging because I didn't want to write. I was writing two books as well as this blog and it all just stopped one day. I could blame it on grieving but who really knows. Writing used to be cathartic for me but I gave it up for adult coloring for awhile. (Adult coloring - those two words together make me giggle...) 

Two years and 12 therapy sessions later, I'm back at it. Luckily, with some good news. The DNR bills are going back through the Michigan Congress. (See prior blog posts for more info.) I was also asked to write an article for the eJournal of the National Hospice and Palliative Care Organization (NHPCO). I'll give a shout out to Dr. Ken Pituch, M.D., Professor of Pediatrics at the University of Michigan. Not only was he Willy's hospice physician, he's a friend and a partner on our DNR bill team. He keeps me involved and connected with others who are trying to move palliative and hospice care forward. He was the one who connected me to the folks at NHPCO and I was honored to write this article. 

More to come later but for now here is the article that will be in the online journal when it is issued: 

There is a growing number of students diagnosed with complex disorders who are considered terminally ill but not actively dying. Death for them could be years. As medical technologies advance, lifespans increase, and the question of how to manage their illness and life in general becomes an issue. Every child should have the opportunity to reach their full potential in whatever time     they have, including the social life and peer experiences found in school. This academic piece is an integral part of the world and how children grow and develop, and move away from childhood in stages.

Medically fragile children have access to individualized educational programs that meet their unique needs through Special Education. However, what happens when parents have a do-not-resuscitate (DNR) order for their child? Just like the other details in their individualized student plan, a parent wants to have assurance that a DNR will be honored in the event of a catastrophic incident at school.

In the State of Michigan, the policies with regards to DNR orders are inconsistent at best. For example, in one county it may be policy for teachers and school staff to carry out the DNR orders step-by-step, and in another county, school officials may not honor them at all. This creates ambiguity, confusion, and frustration for both parents and schools.

This is where we found ourselves as a family in 2014. Our son was terminally ill but not actively dying. Our family selected a school in our district that would give him the most appropriate education, however, this school had a policy to not honor DNR orders. Our son needed the education they offered. By law, this was guaranteed to him, but we were unable to appropriately include his DNR as part of his medical plan. The future was uncertain and it was literally life or death.

William Douglas Pickett was born on March 12, 2004. After an uneventful first four months of life, he was diagnosed with lissencephaly on July 9, 2004 in the University of Michigan Emergency Department after a grand mal seizure. Lissencephaly is a rare, neuromigrational disorder in which the brain does not form correctly during gestation. Willy had no gyri (ridges) which are connected to motor skills. At diagnosis, doctors expected Willy to have a 2-year lifespan. They told us to take him home, be prepared to deal with complex seizures and respiratory issues, and basically try to keep him comfortable until the end.

The early years were the most difficult. As new parents, we were learning how to take care of this very sick baby while doing everything we could to keep him alive. Every time he was sick, we thought it was the end. Mott Children’s Hospital at the University of Michigan became our second home. The stress of the entire situation placed an unimaginable hardship on our family, our other children, our jobs, our finances, and our marriage.

As time progressed, we started to pick up some confidence and hope. Willy had longer periods of improved health. He was enrolled in Early On, which offered early intervention, and the therapists and teachers started the blueprint for what would become his education. They opened up a new world for our family. A world where Special Education meant a life for Willy complete with his own goals and peers. The school had equipment that we could never have afforded at home. They had specialists who had studied how to educate and work with this very special population of students. Willy couldn’t walk or talk, but they focused on what he could do, not what he couldn’t do.

Sometimes their goals were lofty, which made us laugh. We joked that we really just wanted him to breathe and poop. Those goals weren’t enough for his educators. He learned to hold his head up. He learned to make choices with his eyes. He enjoyed swimming in the therapy pool which was not only fun, but therapeutic for his muscles. He received physical, occupational, music, and vision therapies. They went on outings in the town. They did crafts. They listened to stories. He worked hard during therapy sessions and would come home exhausted. He worked himself hard in school and it was a much healthier lifestyle than just lying around at home. After years of occupational therapy, he learned how to hold a toy on his own. He learned how to roll over.

Since lissencephaly is a regressive disorder, Willy’s abilities peaked at a very young age and started to decline slowly every day thereafter. His disorder, along with seizures, pulmonary issues, and cerebral palsy, slowly destroyed his muscles. Any skills he had (swallowing, holding a toy, rolling over, holding his head up,) slowly disappeared. Eventually Willy required a feeding tube so he could get enough nutrition. It is common for respiratory muscles to become badly damaged in children affected with these disorders, and they frequently succumb to respiratory distress as a result of pneumonia.

Regardless of regression, Willy’s educators adapted his goals and met him where he was at. He continued to hit milestones and then regress. Everyone around him would celebrate the gains, and then grieve the losses. He continued to be a happy boy, enjoying music, the pool at his school, outings with his class, snuggling with his loved ones, and watching shows on his iPad.

Willy’s lung function started to go downhill in 2009. We wound up in a cycle of hospitalizations that lasted over three years. Usually he’d start with a cold or sniffle and the next thing you know we were in the intensive care unit and he was fighting for his life.  Until then, we had maintained a very pro-active and aggressive approach to his care. Even though he had been given an approximate life expectancy of 2 and he was now 7, his life had been much better than we ever could have anticipated. When the hospice and palliative care teams would come visit our hospital rooms we promptly sent them away. We knew Willy had a lot of life left to live.

In late fall of 2012, Willy had some increased breathing and swallowing issues due to the continued regression and obstructive sleep apnea. A pediatric otolaryngologist presented us with options that were not good and required some form of complicated surgery. The only viable option was a tracheostomy which, on one hand would have made life a little easier, and on another hand would have seriously increased the complication factor. We decided against all of the options and agreed to maintain our status quo. That night when we got home, I couldn’t help but think that it was the “beginning of the end.”  There were no more procedures or life-saving surgeries that were good options. His regression had made it to that crucial juncture where medical technology and quality of life backed into each other.

In June of 2013 Willy was in the hospital for increased seizure activity. This wasn’t something new. We were always looking for the right concoction of medications that would keep his seizures at bay but not drug him out. During this hospital stay, we were once again presented with the option to consider palliative care or hospice services. Not only had we tried almost everything we were willing to try, Willy had gone quite a bit downhill in the years preceding. It was time for us to consider palliative care or hospice services.

The passing into law of the Affordable Care Act (ACA) allowed for concurrent curative, life prolonging, and hospice care in pediatric cases like these. By providing coverage for specialist care and hospice care simultaneously, the ACA makes it clear that some disorders are different in that although they are terminal, death is not necessarily imminent. These patients require the comfort measures that hospice provides and also ongoing care that comes from specialty clinic visits, care that is not available for most adult hospice patients.

Our goal for Willy was for him to have the best quality of life possible for that which remained, and we decided to go home from the hospital on hospice services. This meant that Willy would still be able to attend school. Hospice would support us with weekly nurse visitations, and our supplies were delivered, including oxygen in the home, morphine, and other comfort measure drugs. If Willy became ill, a call to hospice would provide a home visit from a nurse or doctor. If Willy needed antibiotics we could get them. If Willy took a turn for the worse, we could either provide the comfort measures we had in the home or we could change our minds and head for the hospital for more aggressive treatment. We were also able to still see our physiatrist and our neurologist in clinic for the parts of his care not covered by hospice. If we could have designed a perfect set-up for our imperfect situation, this would be it.

We worked with a team of professionals to create a care plan for Willy which included a DNR. Knowing it was the right thing for our family, did not make the decision to add the DNR into the care plan any less agonizing. We painstakingly listed all of the facts, and knew it was time. Every time Willy was sick he came back to us a different boy. Less of his old self and more of a tired and uncomfortable one. We knew that if his heart stopped beating and resuscitation was needed, we would not want that for him. We would want comfort measures. We would want him to be surrounded by people who love him, whether at home or at school, holding his hands and staying by his side. Once we made this decision we never looked back.

When we found out that Willy’s school would not honor his DNR we were crushed. We would have been devastated if something had happened at school and resuscitation was attempted. I am very sure this is a difficult concept to understand for parents and adults who do not live in a world where children are terminally ill. But we did live in that world and it was not acceptable that a school district could overrule our decision with regards to our DNR.

We decided to still send Willy to school even though we knew they would not honor his DNR because the pros outweighed the cons. Willy loved school, he deserved school and it was his right. We began the process of a lawsuit against the district to force them to honor the DNR.

In late October, 2015, Willy caught a cold. He went to school on Halloween. His cold turned into double lung pneumonia within days. We began treating him with a round of antibiotics but his body did not respond to the drugs. At any point, we could have rescinded his DNR, called an ambulance, have him intubated, and waited. But we had already made that decision. We followed our DNR, made him comfortable, and waited to see if the medication started to work.

At 12:40 a.m. on November 5, 2015, Willy passed away lying next to me in bed. Our lawsuit with the school district ended when he passed.

We went through all the normal motions that came with losing a child. Even though we knew this day would come, we were devastated and not at all ready. The one thing that comforted me is that I knew we made the right decision for Willy. He died because his body was done. He died on his terms without artificial medical technologies prolonging the inevitable. I knew it would still be important to fight for DNR’s in schools and I wanted to continue this as Willy’s legacy.

After years of attempting the DNR fight through local courts, it was recommended to instead take legislative action. Luckily, Michigan already has a DNR Procedures Act so we did not have to start from scratch. However, the Michigan DNR Procedures Act does not address pediatric DNR’s or the educational setting.

With the help of the University of Michigan Pediatric Advocacy Clinic, The University of Michigan Hospice and Palliative care team, and local educational leaders, work has been done to add language that explicitly says that parents can get DNR’s on behalf of their minor children and explicitly mentions school as a context in which DNR’s need to be respected.

After a year-long vetting process with different lobbyists and stakeholders, three bills were sent to the Michigan Senate Judiciary Committee in 2018 and subsequently all three bills passed the Michigan Senate unanimously. However, the bills got stuck in Michigan’s lame duck session, late 2018 and the process started over.

At the time of this writing, the process has started over in the Michigan House of Representatives first this time. Representative Rebekah Warren (D-55) has gathered co-sponsorship support and the new bills are HB5417, 18, and 19. Next step is for the bills to be heard in a House Committee hearing before being sent to the House floor for a vote. There is more than a good chance they will pass since they passed the Senate unanimously in 2018.

For Willy and kids with these regressive disorders, the “end” can be years. In the meantime, they have to live. They deserve an education. They deserve a life of their own with an educational program designed for them. The fact that they have terminal disorders and may have a DNR should not infringe upon their right to an education. The school districts that serve our state must be consistent in their policies regarding pediatric DNR’s. Their policies should not change across town or across another district’s border.  Just as you’d write a medical care plan that included an epi pen for a student with a deadly allergy, medical care plans for student’s with DNR’s should also be included in the educational setting.

When a parent or guardian reaches the agonizing decision to write a DNR for their child, no one should be able to tell them that the DNR will not be honored. Especially in an educational setting where they have the right to have the same experiences as their peers right up until the day they pass. No child is less entitled to the right to a free, public, and appropriate education because of a diagnosis, prognosis, or a medical order. 





://www.mottchildren.org/conditions-treatments/palliative-care

https://www.law.umich.edu/clinical/pediatricadvocacyclinic/Pages/default.aspx

https://www.legislature.mi.gov/(S(tdpnwo5hgs1janjb2qd4o0uv))/mileg.aspx?page=BillRecentActivity

The Bills Passed Unanimously!

I can't believe that in the business of life I never blogged about our Senate bills passing unanimously. I will place hold and update this soon.

For now, here are the links:

https://legislature.mi.gov/(S(utrexia2z4qyz2w42mhrhswp))/mileg.aspx?page=getObject&objectName=2018-SB-0827

https://legislature.mi.gov/(S(utrexia2z4qyz2w42mhrhswp))/mileg.aspx?page=getObject&objectName=2018-SB-0784

https://legislature.mi.gov/(S(utrexia2z4qyz2w42mhrhswp))/mileg.aspx?page=getObject&objectName=2018-SB-0786

We are now waiting for the House to take these up which should happen as soon as Congress is back in session this fall.

Grief and how far I've come

This was a facebook post from this day last year. I wanted to turn it into a blog post because I enjoy pretending to talk back to the Grief. Read on and you'll see what I mean. 

I had a nice talk today with my department Chair (who was Willy's doctor for 11 years.) He was in the middle of ending a phone call when I walked over to escort him out of our building. (He was visiting the building I work in and didn't know the way out.)

He looked up at me kind of deflated and told me that another patient just passed. He was 13 and had a condition similar to Willy. He passed after a few good years on hospice where he had been doing relatively well, just like Willy. He also passed after a short illness of the lungs, just like Willy.

He asked me if I'd be willing to talk to the parents and see if I could offer any assistance. He asked if I was up to it and I told him of course. After getting more information and authorization from the mom, I was given her name and phone number. She told Margy Fox, one of our most fabulous clinicians, that she'd very much like to talk to me.

Apparently they'd like to talk about the things you'd expect but they also have a ton of durable medical equipment and supplies to hand off to a new family.

I plan to meet with the family and see what I can offer them. I can definitely help with emotional support and find new homes for their supplies.

He and I got to talking about PTSD and if it would bother me. I told him of course it does. I mean, I work for U of M Medical School. Every time I have to go to the hospital or med school (I walk through the hospital to get to the med school) there are a hundred triggers. Sights, sounds, and even worse, smells. I will never forget the different smells that float around the hospital. Especially the wipes...

It puts me in a bad place, but temporarily. Once the initial wave is over, I gain momentum. Strength. Every step forward is progress. Every phone call I make to help another family is progress. Every medical supply that I try to re-home is progress. My basement is full of medical supplies right now from donations. Little by little I find new homes for them. Does it bother me to see green and blue pads in my laundry room? Of course. They were liquid gold when Willy was here with us.

But there is a larger mission. There are needs that need to be fulfilled and because of my job contacts, I am in a unique position to fill them. Do I say no? No. It's hard to say no.

I know what these parents are about to go through. It's life changing. A child should never pass before their parents. It's the worst grief imaginable. Their life is forever changed.

I will tell them it's shitty. I will tell them there will be days they are mad at everyone. There will be days when they'd rather scratch their eyes out than have small talk with neighbors, co-workers, family, friends, or random people.

There will be days when they lie in bed crying so hard that their eyes become crusted and fused to their pillow. They will want to punch things. They might end up punching something! The relationships they have with their friends and family will change significantly. They will lose friends. They will lose family members. They will gain new friends who become family members.

The relationship between the spouses will change. Some days for good and some days for bad. Their other children will suffer in quiet and closed-off ways that they may not notice.

They will get "the dark" as I call it. Your day could be going along fine when all of the sudden the dark hits: and it stays. It can stay for days or weeks. I just came out of a dark spell last week. And although I feel good right now, I know the dark is always around the corner. I gave it a presence and sometimes I put words in its mouth.

"Hi, Dawn. Remember me? I'm the darkness that is going to envelop you as I bring all of the saddest memories into your brain. I'm going to make you relive the night your Willy died while snuggling with you in your bed. How because you were spooning with him and your arms were around him you could feel his heart stop beating. How his sister, who was 9, threw herself on the gurney as the funeral home staff were taking him out of the bedroom. How you and the other three parents, his brother and sister, and his grandma and grandpa followed the gurney out through the house and into the dark night at 4:00 a.m. How, as you walked out, you all sang You Are My Sunshine to him.

Remember me! I'm back!!"

This is how it happens. Does it happen less as the time goes on? Sure. But it's always just as strong.

But as we are coming up on the two-year anniversary of his death, I can finally muster up some strength to talk back to the dark.

"Hi, Dark. Thanks for stopping by. I still want to grieve my son. You don't scare me. You make me sad but it's only because I loved that boy so much. To grieve so hard only means you loved so deeply. I wouldn't trade it. In fact, I welcome your visits because they remind me how much I loved my son.

Your visits also remind me how far I've come. No, things will never be the same. I am a mother whose child died in her arms after a horrific 11-year battle. But I've found plenty of ways to make positive progress as a result. I'm changing state legislation so that all kids can get a proper education. So that terminally Ill kids who are not actively dying can go to school and have their advance directives honored. I started a 501c3 two years ago, and although it's fledgling, it has over 250 members who are supporting each other, sharing stories, swapping medical supplies, and learning there's life after these diagnoses. I'm working on all sorts of special projects via my work connections that are meaningful and are making great changes. I've become a much more empathetic person than I was 11 years ago.

I am sad that Willy had lissencephaly but I like myself more because of our experiences with him. I'm still mourning him and a culture and lifestyle that was exhausting. 24/7/365. But slowly and surely there are lights poking through you, Dark. You're not as suffocating as you were. I'm learning to live with you. The times you come to visit I've learned just to roll with it. Let you do your thing and then when you move on, I will go about the work I have to do."

If you're still reading this long post, I thank you. Writing, blogging, and social media has helped me communicate my way through this journey. I appreciate each and every one of you who have stuck by my family these past 11 years.

Be kind. You never know what someone is going through. 

Hearing Day! Testimony Finalized.

Senator Jones and Committee, I want to thank you all for hearing our testimony today in support of Senate bills 784, 785, and 786. Senators Jones, Warren, Bieda, and Brandenburg, thank you for introducing these bills and allowing for them to be heard. If I may, I’d like to take a few minutes to share with you all about my son, Willy, and the journey that has brought us to you today.

My name is Dawn Krause and I am a lifelong Michigan resident from Saline. I am married and have three children. I work as a research administrator for the University of Michigan Medical School. I received two degrees from Michigan State; one in Eastern European History and one in International Political Science. Willy’s father is in law enforcement and his step-father is a professor at Central Michigan University. Willy’s step-mother is a teacher with a master’s degree in social work. I give you this background only to explain how no life experience, no job or education could ever prepare you for what we have gone through.

My middle son, William (we called him Willy), was born in March of 2004. My pregnancy with him was uneventful as were his first four months of life. In July of 2004, in the emergency department at the University of Michigan, after two harrowing ambulance rides, Willy was diagnosed with lissencephaly. I remember looking at the physician who diagnosed him and thinking, “Well, ok, give us a prescription. Certainly there’s a drug that will fix this.” And I remember him looking at me and saying that this situation wasn’t like that. It was terminal and Willy probably will not make his second birthday.

Without getting bogged down with too many medical details, lissencephaly is a neuromigrational brain disorder that occurs in the first trimester when the brain fails to create the gyri that gives you motor skills. Willy’s brain was smooth like a bowling ball. We were told to take him home, be prepared to deal with complex seizures and respiratory issues and basically try to keep him comfortable while we waited for him to pass.

The early years were very difficult. We were learning how to take care of this very sick baby and doing everything we could to keep him alive. Every time he was sick we thought it was the end. Mott Children’s Hospital became our second home. The stress of the entire situation threatened our entire family, the sanctity of our household, the stability of our finances, and the emotional base for our other two children. Yet, he was the most beautiful baby I’d ever seen. Fragile and innocent and seemingly perfect in his own way.

Sometime soon after diagnosis, a representative of the Jackson County Early On program contacted us to offer services. Services? My ears perked up. What did they mean, services? I’ve always likened the teachers and therapists from the Early On Program as knights who ride in on fancy horses carrying a big sword to help us do battle. We enrolled Willy in Early On. From shortly after diagnosis until age 3, Willy was assigned a team of experts who each came in once a week to assist and teach. He had a teacher, an occupational therapist, and a physical therapist. He started to have longer periods of improved health. He started to learn to do things we were told he would never do. They opened up a new world for us: a world where special education meant a life for Willy with goals of his own.

Let’s talk about disabilities for a minute. According to the World Health Organization, there are over 1 billion people in the world with disabilities. The World Health Organization states that a disability is “a continuum, relevant to the lives of all people to different degrees and at different times in their lives.” Disabilities disproportionately affect vulnerable populations. Children with disabilities are less likely to attend school. Rehabilitation and educational programs help to maximize functioning and promote independence. People with disabilities can and should live and participate in the community. It is a universal phenomenon and a natural feature of the human condition. We deny individuals their dignity -- the right to be valued, respected, and treated ethically -- when we refuse to accept disability as a natural feature of the human condition by denying access to education and being part of our community in the most fundamental of ways.

When Willy turned 3 (who said he wasn’t going to make it to two anyway!), he was able to attend school full-time as his health allowed. He was a student at the Lyle Torrant Center in Jackson. Words cannot adequately describe how amazing this place is. They had teachers and therapists and a pool. They had music therapy and adapted physical education. They took the kids on community outings to get them out. They had equipment at school that we could never have afforded on our own. They had specialists there who had studied how to educate and work with this very special population of students. They focused on what he could do not what he couldn’t do.

Sometimes their goals were lofty which made us laugh. We joked that we really just wanted him to poop and breathe. (Constipation caused a lot of problems for Willy and usually wound us up in the hospital.) They wanted more for him. He learned to roll over. He learned to hold his head up. He learned to make choices with his eyes. He enjoyed swimming in the therapy pool which was not only fun for him but good for his muscles which kept him healthier. They did crafts. They listened to stories. He worked hard during therapy sessions and came home exhausted. He was healthier when he was in school because it is a much healthier lifestyle than just lying around at home. After years of working with his occupational therapist, he learned how to hold a toy on his own.

One of the most important aspects of an education is experiencing life with your peers. Think of times in your life when you have felt pure happiness and joy. Was it on your own, by yourself? Was it while you were off somewhere else, apart from your friends? I am guessing, no. If we pull from the times in life that are most meaningful to us, it is when we have been with others - sharing experiences, sharing joys, sharing our lives. We all desire connection and interaction. Maybe it comes at different times and in different ways, but we all desire to be with those who are our peers. Everyone has something they bring to an experience. We all learn and benefit from each other. Willy loved to be with his friends.

As he learned, we learned. As he grew, we grew. We became very close with his teachers, therapists, aides, and nurses. We became more confident in our skills as special needs parents. We learned how to focus on quality of life versus quantity. Life was good. Life seemed normal again even though it was anything but.

Unfortunately, lissencephaly, as many of these types of disorders are, is regressive. This means Willy’s performance peaked at a very young age and started to decline slowly every day thereafter. It was a slow regression and we had many good years. But his disorder, which with it brought severe seizures, pulmonary issues, and the worst culprit, cerebral palsy, was slowly destroying his muscles. Any skills he had (swallowing, holding a toy, rolling over, holding his head up, making choices with his eyes), were slowly going away. Eventually we had to put a feeding tube in so that he could get enough nutrition. Your muscles control everything; how you eat, swallow, breathe, urinate – everything. His respiratory muscles were especially damaged from chronic pneumonia.

Even so, the educators and therapists working with Willy just kept changing the goals. Adapting. Meeting him where he was at. He continued to hit goals and milestones and then he’d regress and lose some function. We’d celebrate the goals, no matter how small, and grieve the losses. For the most part, he continued to be a happy little guy, enjoying music, the pool, his classmates, snuggling, and his iPad. He went to Washington, D.C. in 2014 to advocate for a rehab technology bill that was eventually signed into law. We never stopped. While he continued to do his thing, I sat on boards and became an advocate. I started a 501c3 to help families of children with cerebral palsy. Willy kept at his education with gusto. 

Put simply, We Lived.

Willy’s lung function started to go seriously downhill somewhere around 2009. We wound up in an on-again, off-again cycle of hospitalizations that lasted over three years. Usually he’d start with a cold or sniffle and the next thing you know we were in the intensive care unit and he was fighting for his life.

Up until the summer of 2012, we had always maintained a very pro-active and aggressive approach to his medical care. Even though he had been given a life expectancy of two and he was now 9, his life had been much better than we ever thought it would be. When the hospice and palliative care teams visited us during hospital stays we promptly sent them away. We knew Willy had a lot of life left to live.

In late fall of 2012, Willy had been having increased breathing and swallowing issues due to the continued regression and obstructive sleep apnea. We had an appointment with Dr. Charles Koopman, a seasoned and well-respected ear, nose, and throat physician, to see what our options were. The options presented to us were not good. All of them required some form of complicated surgery that he may not even recover from to begin with.

Dr. Koopman was the first physician to really make us think about where we wanted to go for Willy in terms of quality versus quantity. Up until now, the choices had been easy. But it was changing and changing fast. That night when we got home, I couldn’t help but thinking it was the beginning of the end. There were no more procedures or life-saving surgeries that were options. His regression reached that crucial juncture where we realistically could not do more to keep him alive without sacrificing his quality of life. It was at this point I realized that Willy was “terminally ill but not actively dying.” This phrase would become the basis for all the decisions we made from then on and we would adjust our decision-making process accordingly.

In June of 2013, Willy was hospitalized for increased seizures and secretions. This wasn’t something new. His medications would routinely lose their efficacy. We were always looking for the right combination of medicines that would help him but not drug him out. (Again, quality of life.) During this hospital stay, palliative care and hospice services were again presented to us. Not only had we tried everything we were willing to try, but Willy had gone downhill quite a bit in the previous year. Willy’s father and I decided it was time for us to have the talk about where we go from here and whether or not it was time to consider palliative or hospice care.

The Affordable Care Act provided for pediatric hospice patients to also receive specialty physician care in cases like these. These patients require comfort measures that hospice provides and also curative care that comes from specialists. We knew this would be the perfect combination of care for the next few years of Willy’s life. If we could have designed perfect care for a very imperfect situation, this was it.

With our goal being the best quality of life possible for the time Willy had here, (keeping in mind he was terminally ill but not actively dying), we decided to go home from the hospital on hospice services. Willy would still be able to attend school. We would have support for the first time ever (we always made too much for any assistance or home nursing), by having supplies delivered like oxygen, medication, diapers, and comfort medicines. If Willy became ill, his hospice physician, Dr. Ken Pituch who is here with us today, would come by and assess. If Willy took a turn for the worse, we could elect to do a round of antibiotics and use the comfort measures we had at home, or we could change directions and head to the hospital for more aggressive treatment. We were also still able to see our physiatrist and neurologist for specialty clinic care.

We worked with a team of professionals to design a medical care plan which included a “do not resuscitate” (DNR) order. The decision to add a DNR to Willy’s care plan was no less agonizing just because we knew it was the right thing to do. Taking all the facts into consideration we knew it was time. Every time Willy was sick he came back to us a different boy; less of his old self and more tired and uncomfortable. We knew that should something happen where his heart stopped beating, we would not want resuscitation for him. We would want comfort measures. We would want him surrounded by people who love him, whether at home or at school, holding his hands and staying by his side singing his signature song “You are my Sunshine.” Once we made this decision, we never looked back but hoped he would have many more years with us still.

At the time, Willy was attending Haisley Elementary in Ann Arbor Public School District. We had a team meeting whereby his DNR became a part of his school medical plan. The teachers, aides, therapists, and school staff all knew about his DNR and knew what to do should a catastrophic event occur on their watch.

The next school year we decided to transfer Willy to High Point School in the Washtenaw Intermediate School District because they have a more robust special education program and more services available for Willy including a therapy pool. We were sad to leave Haisley but again, keeping with the theme of quality of life, we knew it was the right decision.

When we found out that WISD would not honor his DNR we were crushed. We would have been devastated if something had happened at school and resuscitation was attempted. I am sure this is a very difficult concept for most people to understand. But in a world where children were terminally ill, the world that we lived in, this was normal. To us, it was not acceptable that school district lawyers could overrule our decision with regards to Willy’s DNR. After years of having Willy’s teachers and therapists be such a close part of our life and seeing the joy in his face while at school, we were now faced with a decision – let him stay in school and hope nothing happens or take him out of school.

We decided to still send Willy to school even though we knew they would not honor his DNR. We knew the pros outweighed the cons. Willy loved school. He loved the pool. He needed his peers and the stimulation it all offered. It was his legal right to have an education. However, we did start a lawsuit against the district to honor the DNR. The suit was still in progress when Willy passed in 2015.

For Willy and kids with these regressive disorders, the “end” can be years. In the meantime, they have to live. They deserve an education. They deserve a life of their own with an education program designed for them. This is a right under the Free Appropriate Public Education (FAPE). FAPE is an educational right of children with disabilities that is guaranteed by the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act. The fact that they have terminal disorders and may have a DNR should not infringe upon their right to an education. The school districts that serve our state must be consistent in their policies regarding DNR’s. Their policies should not change across a town or a county’s border. Just as you’d write a medical care plan that included an epi pen for a student with a severe allergy, medical care plans for student’s with DNR’s should also be included in the educational setting.

When a parent or guardian reaches the agonizing decision to place a DNR for their child, no one should be able to tell them that the DNR will not be honored. Especially in an educational setting where they have the right to have the same experiences as their peers right up until the day they pass. No child is less entitled to their rights to FAPE because of a diagnosis, prognosis, or a medical order.

Our state’s current DNR Procedures Act says nothing about a parent’s ability to place a DNR for their minor child, nor does it say anything about a DNR in an educational setting. This creates ambiguity and uncertainty for both the parents and the schools. We want to amend that act by adding language that explicitly says parents can place a DNR on behalf of their minor child (who qualify) and explicitly mentions schools as a context in which DNR’s must be respected.

We want to frame this as a win-win; a way to clarify the law so that everyone is on the same page. It is a win-win because we are also willing to add language to the DNR procedures act so that it explicitly says teachers or staff who act responsibly and follow the DNR’s instructions are immunized from liability. We also want guardians to have the same rights as parents where DNR’s are concerned.

This issue is not going away. Medical technology is such that babies are being born who would not have made it to term just years ago. Children with severe birth defects are living longer than ever before. Medical advances are taking people with disabilities further than anyone ever thought possible. Because of this, medical technology and education must grow together. As medicine continues to advance, so must the education that we offer our most vulnerable citizens.

I ask you today to consider our story but please know there are many more out there just like ours. I ask that DNR’s be honored in all educational settings in our great state. I ask that the law is changed to allow medical providers and educational professionals to team with families and write appropriate care plans that are as individualized as the student. Proper protocols and policies will follow so that staff is comfortable and knows what to do. Something as important as this, which really comes down to life or death, should be consistent between every educational jurisdiction in Michigan. To my knowledge we are the only state, besides Alabama who just passed similar bills through their Senate, to address these delicate and important issues. I have lived here my entire life and would not be more proud of my government if we could help lead the charge for special education into the future and protect our most vulnerable students.

Please work with us to make it so.

Thank you. 

Hearing Day - Four Years in the Making

Senator Jones and Committee, Obviously I want to thank you all for hearing our testimony today in support of Senate bills 784, 785, and 786. Senators Jones, Warren, Bieda, and Brandenburg, thank you for introducing these bills and allowing for them to be heard. If I may, I’d like to take a few minutes to share with you all about my son, Willy, and the journey that has brought us to you today.

My name is Dawn Krause and I am a lifelong Michigan resident from Saline. I am married and have three children. I work as a research administrator for the University of Michigan Medical School. I received two degrees from Michigan State; one in Eastern European History and one in International Political Science. Willy’s father is in law enforcement and his step-father is a professor at Central Michigan University. Willy’s step-mother is a teacher with a master’s degree in social work. I give you this background only to explain how no life experience, no job or education could ever prepare you for what we have gone through.

My middle son, William (we called him Willy), was born in March of 2004. My pregnancy with him was uneventful as were his first four months of life. In July of 2004, in the emergency department at the University of Michigan, after two harrowing ambulance rides, Willy was diagnosed with lissencephaly. I remember looking at the physician who diagnosed him and thinking, “Well, ok, give us a prescription. Certainly there’s a drug that will fix this.” And I remember him looking at me and saying that this situation wasn’t like that. It was terminal and Willy probably will not make his second birthday.

Without getting bogged down with too many medical details, lissencephaly is a neuromigrational brain disorder that occurs in the first trimester when the brain fails to create the gyri that gives you motor skills. Willy’s brain was smooth like a bowling ball. We were told to take him home, be prepared to deal with complex seizures and respiratory issues and basically try to keep him comfortable while we waited for him to pass.

The early years were very difficult. We were learning how to take care of this very sick baby and doing everything we could to keep him alive. Every time he was sick we thought it was the end. Mott Children’s Hospital became our second home. The stress of the entire situation threatened our entire family, the sanctity of our household, the stability of our finances, and the emotional base for our other two children.

Sometime soon after diagnosis, a representative of the Jackson County Early On program contacted us to offer services. Services? My ears perked up. What did they mean, services? I’ve always likened the teachers and therapists from the Early On Program as knights who ride in on fancy horses carrying a big sword to help us do battle. We enrolled Willy in Early On. From shortly after diagnosis until age 3, Willy was assigned a team of experts who each came in once a week to assist and teach. He had a teacher, an occupational therapist, and a physical therapist. He started to have longer periods of improved health. He started to learn to do things we were told he would never do. They opened up a new world for us: a world where special education meant a life for Willy with goals of his own.

World Health Organization states that a disability is “a continuum, relevant to the lives of all people to different degrees and at different times in their lives,” a “universal phenomenon” and a “natural feature of the human condition.” We deny individuals their dignity -- the right to be valued, respected, and treated ethically -- when we refuse to accept disability as a natural feature of the human condition by denying access to education and being part of our community in the most fundamental of ways.

When Willy turned 3 (who said he wasn’t going to make it to two anyway!), he was able to attend school full-time as his health allowed. He was a student at the Lyle Torrant Center in Jackson. Words cannot adequately describe how amazing this place is. They had teachers and therapists and a pool. They had music therapy and adapted physical education. They took the kids on community outings to get them out. They had equipment at school that we could never have afforded on our own. They had specialists there who had studied how to educate and work with this very special population of students. They focused on what he could do not what he couldn’t do.

Sometimes their goals were lofty which made us laugh. We joked that we really just wanted him to poop and breathe. (Constipation caused a lot of problems for Willy and usually wound us up in the hospital.) They wanted more for him. He learned to roll over. He learned to hold his head up. He learned to make choices with his eyes. He enjoyed swimming in the therapy pool which was not only fun for him but good for his muscles which kept him healthier. They did crafts. They listened to stories. He worked hard during therapy sessions and came home exhausted. He was healthier when he was in school because it is a much healthier lifestyle than just lying around at home. After years of working with his occupational therapist, he learned how to hold a toy on his own.

As he learned, we learned. As he grew, we grew. We became very close with his teachers, therapists, aides, and nurses. We became more confident in our skills as special needs parents. We learned how to focus on quality of life versus quantity. Life was good. Life seemed normal again even though it was anything but.

Unfortunately, lissencephaly, as many of these types of disorders are, is regressive. This means Willy’s performance peaked at a very young age and started to decline slowly every day thereafter. It was a slow regression and we had many good years. But his disorder, which with it brought severe seizures, pulmonary issues, and the worst culprit, cerebral palsy, was slowly destroying his muscles. Any skills he had (swallowing, holding a toy, rolling over, holding his head up, making choices with his eyes), were slowly going away. Eventually we had to put a feeding tube in so that he could get enough nutrition. Your muscles control everything; how you eat, swallow, breathe, urinate – everything. His respiratory muscles were especially damaged from chronic pneumonia.

Even so, the educators and therapists working with Willy just kept changing the goals. Adapting. Meeting him where he was at. He continued to hit goals and milestones and then he’d regress and lose some function. We’d celebrate the goals, no matter how small, and grieve the losses. For the most part, he continued to be a happy little guy, enjoying music, the pool, his classmates, snuggling, and his iPad. He went to Washington, D.C. in 2014 to advocate for a rehab technology bill that was eventually signed into law. We never stopped. While he continued to do his thing, I sat on boards and became an advocate. I started a 501c3 with the Chair of my department (who was Willy's doctor) to help families of children with cerebral palsy. Willy kept at his education with gusto. We lived.

Willy’s lung function started to go seriously downhill somewhere around 2009. We wound up in an on-again, off-again cycle of hospitalizations that lasted over three years. Usually he’d start with a cold or sniffle and the next thing you know we were in the intensive care unit and he was fighting for his life.

Up until the summer of 2012, we had always maintained a very pro-active and aggressive approach to his medical care. Even though he had been given a life expectancy of two and he was now 9, his life had been much better than we ever thought it would be. When the hospice and palliative care teams visited us during hospital stays we promptly sent them away. We knew Willy had a lot of life left to live.

In late fall of 2012, Willy had been having increased breathing and swallowing issues due to the continued regression and obstructive sleep apnea. We had an appointment with Dr. Charles Koopman, a seasoned and well-respected ear, nose, and throat physician, to see what our options were. The options presented to us were not good. All of them required some form of complicated surgery that he may not even recover from to begin with.

Dr. Koopman was the first physician to really make us think about where we wanted to go for Willy in terms of quality versus quantity. Up until now, the choices had been easy. But it was changing and changing fast. That night when we got home, I couldn’t help but thinking it was the beginning of the end. There were no more procedures or life-saving surgeries that were options. His regression reached that crucial juncture where we realistically could not do more to keep him alive without sacrificing his quality of life. It was at this point I realized that Willy was “terminally ill but not actively dying.” This phrase would become the basis for all the decisions we made from then on and we would adjust our decision-making process accordingly.

In June of 2013, Willy was hospitalized for increased seizures and secretions. This wasn’t something new. His medications would routinely lose their efficacy. We were always looking for the right combination of medicines that would help him but not drug him out. (Again, quality of life.) During this hospital stay, palliative care and hospice services were again presented to us. Not only had we tried everything we were willing to try, but Willy had gone downhill quite a bit in the previous year. Willy’s father and I decided it was time for us to have the talk about where we go from here and whether or not it was time to consider palliative or hospice care.

The Affordable Care Act provided for pediatric hospice patients to also receive specialty physician care in cases like these. These patients require comfort measures that hospice provides and also curative care that comes from specialists. We knew this would be the perfect combination of care for the next few years of Willy’s life. If we could have designed perfect care for a very imperfect situation, this was it.

With our goal being the best quality of life possible for the time Willy had here, (keeping in mind he was terminally ill but not actively dying), we decided to go home from the hospital on hospice services. Willy would still be able to attend school. We would have support for the first time ever (we always made too much for any assistance or home nursing), by having supplies delivered like oxygen, medication, diapers, and comfort medicines. If Willy became ill, his hospice physician, Dr. Ken Pituch who is here with us today, would come by and assess. If Willy took a turn for the worse, we could elect to do a round of antibiotics and use the comfort measures we had at home, or we could change directions and head to the hospital for more aggressive treatment. We were also still able to see our physiatrist and neurologist for specialty clinic care.

We worked with a team of professionals to design a medical care plan which included a “do not resuscitate” (DNR) order. The decision to add a DNR to Willy’s care plan was no less agonizing just because we knew it was the right thing to do. Taking all the facts into consideration we knew it was time. Every time Willy was sick he came back to us a different boy; less of his old self and more tired and uncomfortable. We knew that should something happen where his heart stopped beating, we would not want resuscitation for him. We would want comfort measures. We would want him surrounded by people who love him, whether at home or at school, holding his hands and staying by his side singing his signature song “You are my Sunshine.” Once we made this decision, we never looked back but hoped he would have many more years with us still.

At the time, Willy was attending Haisley Elementary in Ann Arbor Public School District. We had a team meeting whereby his DNR became a part of his school medical plan. The teachers, aides, therapists, and school staff all knew about his DNR and knew what to do should a catastrophic event occur on their watch.

The next school year we decided to transfer Willy to High Point School in the Washtenaw Intermediate School District because they have a more robust special education program and more services available for Willy including a therapy pool. We were sad to leave Haisley but again, keeping with the theme of quality of life, we knew it was the right decision.

When we found out that WISD would not honor his DNR we were crushed. We would have been devastated if something had happened at school and resuscitation was attempted. I am sure this is a very difficult concept for most people to understand. But in a world where children were terminally ill, the world that we lived in, this was normal. To us, it was not acceptable that school district lawyers could overrule our decision with regards to Willy’s DNR. After years of having Willy’s teachers and therapists be such a close part of our life and seeing the joy in his face while at school, we were now faced with a decision – let him stay in school and hope nothing happens or take him out of school.

We decided to still send Willy to school even though we knew they would not honor his DNR. We knew the pros outweighed the cons. Willy loved school. He loved the pool. He needed his peers and the stimulation it all offered. It was his legal right to have an education. However, we did start a lawsuit against the district to honor the DNR. The suit was still in progress when Willy passed in 2015.

For Willy and kids with these regressive disorders, the “end” can be years. In the meantime, they have to live. They deserve an education. They deserve a life of their own with an education program designed for them. This is a right under the Free Appropriate Public Education (FAPE). FAPE is an educational right of children with disabilities that is guaranteed by the Rehabilitation Act of 1973 and the Individuals with Disabilities Education Act. The fact that they have terminal disorders and may have a DNR should not infringe upon their right to an education. The school districts that serve our state must be consistent in their policies regarding DNR’s. Their policies should not change across a town or a county’s border. Just as you’d write a medical care plan that included an epi pen for a student with a severe allergy, medical care plans for student’s with DNR’s should also be included in the educational setting.

When a parent or guardian reaches the agonizing decision to place a DNR for their child, no one should be able to tell them that the DNR will not be honored. Especially in an educational setting where they have the right to have the same experiences as their peers right up until the day they pass. No child is less entitled to their rights to FAPE because of a diagnosis, prognosis, or a medical order.

Our state’s current DNR Procedures Act says nothing about a parent’s ability to place a DNR for their minor child, nor does it say anything about a DNR in an educational setting. This creates ambiguity and uncertainty for both the parents and the schools. We want to amend that act by adding language that explicitly says parents can place a DNR on behalf of their minor child (who qualify) and explicitly mentions schools as a context in which DNR’s must be respected.

We want to frame this as a win-win; a way to clarify the law so that everyone is on the same page. It is a win-win because we are also willing to add language to the DNR procedures act so that it explicitly says teachers or staff who act responsibly and follow the DNR’s instructions are immunized from liability. We also want guardians to have the same rights as parents where DNR’s are concerned.

This issue is not going away. Medical technology is such that babies are being born who would not have made it to term just years ago. Children with severe birth defects are living longer than ever before. Medical advances are taking people with disabilities further than anyone ever thought possible. Because of this, medical technology and education must grow together. As medicine continues to advance, so must the education that we offer our most vulnerable citizens.

I ask you today to consider our story but please know there are many more out there just like ours. I ask that DNR’s be honored in all educational settings in our great state. I ask that the law is changed to allow medical providers and educational professionals to team with families and write appropriate care plans that are as individualized as the student. Proper protocols and policies will follow so that staff is comfortable and knows what to do. 

Something as important as this, which really comes down to life or death, should be consistent between every educational jurisdiction in Michigan. To my knowledge we are the only state, besides Alabama who just passed similar bills through their Senate, to address these delicate and important issues. I have lived here my entire life and would not be more proud of my government if we could help lead the charge for special education into the future and protect our most vulnerable students.

Please work with us to help make it so.

Thank you.