Pediatric DNR's and the Right to an Education: Our Day in Court

I just met with the University of Michigan’s Pediatric Advocacy Clinic student attorneys.  They have been diligently working on the pediatric DNR issue under the direction of U of M law school professor Debra Chopp. 

We have all been working on this issue for about 2 ½ years now; trying different ways to “force” all the school systems in Michigan to honor pediatric DNR’s. The processes are sluggish and it takes a lot of patience to watch it all roll out.  Our prior attempts came to a grinding halt when Willy passed because he was the plaintiff.

This time, we are going straight to the Michigan Legislature. Senator Rick Jones (R-24^th Michigan Senate District), who over the years has been a friend to the Pediatric Advocacy Clinic, has agreed to hold a testimony day next Thursday. He is sympathetic to our cause and is interested in learning more.

If it goes our way, he will agree to sponsor a bill to amend the language of the Michigan Do-Not-Resuscitate Procedure Act of 1996 so that schools will have the required protection from liability that their lawyers have wanted. In essence, they will be “forced” to honor DNRs in the educational setting. Considering who Senator Jones is and the fact that we have a Republican majority in both the house and the Senate AND a Republican governor, chances are great that the bill would be passed. (It goes without saying that most Democrats would support this as well.)

Senator Jones will not support any bill that doesn’t have the support of Right to Life.  Right to Life and the Archdiocese of Detroit both have to either support the bill or at the very least be neutral. The law students did their work, reached out to both groups, and received their support. This makes him more interested and brings us closer to our goal.

Next Thursday I will be meeting with Senator Jones along with Debra Chopp, Dr. Ken Pituch from the University of Michigan Hospice and Palliative Care program, and the student lawyers.  It will be closed door testimony.  My hope is that our testimony will be compelling enough for him to agree to sponsor a bill on the spot.  The reality is that the meeting could go many ways. He could say no. He could put it on the back burner.  He could red pen our proposed language change and send it back to us.

This issue affects a small part of our population. It’s not “sexy” legislation. It’s largely bi-partisan. If this bill gets passed, it won’t create world peace of solve homelessness. But to those affected by this issue, it is life and death. It is part of taking care of the most vulnerable of our population, our children who are terminally ill. It will allow us to feel comfortable giving them an education with their peers and know that they will be properly taken care of in school.

I’ve practiced my statement in front of different groups of professionals. I’ve taken their critiques and changed a few things.  I’m ready.  This is the most hopeful I have been about resolving this issue since we started this fight.

If anyone is in Senator Jones’ district (Clinton, Eaton, Shiawassee, and parts of Ingham County – Locke Township, Wheatfield Township, Williamston city, and Williamston Township) please let me know.  I am going to prepare verbiage you can use to send his office a quick email in support of this.  I am not a constituent of his and it doesn’t necessarily matter if he agrees to sponsor the bill.  However, if he has constituents who are in favor, it will help our case if he hears from you.

I’m including below my statement. Please wish us all well. 

My Statement:

First, thank you, Senator Jones, for arranging this time for us to come speak.  I know there are constant demands on your time and we are all very appreciative of this opportunity. I am excited to introduce you to my son, Willy.

My name is Dawn Krause and I am from Saline.  I am married and have three children.  I work as a research administrator at the University of Michigan.  I received two degrees from Michigan State University; one in Eastern European History and one in Interdisciplinary Studies in Social Sciences with a cognate in International Political Science.  Willy’s father works in law enforcement and has a degree in anthropology and his step-mom has degrees in education and social work. My husband has a PhD in American Studies and is a professor at Central Michigan University.  I give you this background for no other reason than to explain how no life experience, job, or level of education could ever prepare you for what we have had to go through.

My middle son, William, (Willy), was born in March of 2004.  My pregnancy with him was normal and uneventful as were his first four months of life. In July of 2004 after a seizure he was diagnosed with lissencephaly.  Lissencephaly is a rare neuromigrational disorder in which the brain does not form correctly during gestation.  Willy had no gyri or ridges which are what gives you your motor skills.  At diagnosis, we were given a two-year life expectancy for Willy.  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 the end.

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 was maddening to our family, to our other children, to our jobs, our finances, and our marriage.

After a while we started to pick up some confidence and hope. Willy started to have longer periods of improved health. He was enrolled in Early On in Jackson County and the therapists and teachers there taught us how to give him a quality of life. They opened up a new world for us. A world where special education meant a life for Willy with goals of his own. They had equipment at school that we could have never afforded to have at home. 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 was a large part of our lives and caused a lot of problems for Willy.) They wanted more for him. 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. He received physical, occupational, music, and vision therapies.  They went on outings in town.  They did crafts. They listened to stories. He worked hard during therapy sessions and would come 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 occupational therapy he learned how to hold a toy on his own. He learned how to roll over.

Unfortunately, as I mentioned, lissencephaly is a regressive disorder.  This means Willy’s performance peaked at a very young age and started to decline slowly every day thereafter. Mind you, it was a slow regression and we had a lot of really good years in there. But his disorder, along with severe seizures, pulmonary issues, and cerebral palsy, was slowly destroying his muscles. Any skills he had (swallowing, holding a toy, rolling over, holding his head up,) were slowly going away.   Eventually we had to put a feeding tube in so 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 us 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 skill or function.  We’d celebrate the gains, no matter how small, and we’d grieve the losses. For the most part, he continued to be a happy boy, enjoying music, the pool at his school, outings with his class, snuggling with loved ones, and his iPad with his shows.

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.

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.

In late fall of 2012, Willy had been having some increased breathing and swallowing issues due to the continued regression and his obstructive sleep apnea. We had an appointment with Dr. Charles Koopman, an ear, nose, and throat physician, to see what our options were.  The options that were presented to us were not good. All of them required some form of complicated surgery.  The only real viable option for us 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 the trach.

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 options.  It became a situation where we would just use what we had to keep him comfortable. His regression had made it to that crucial juncture where we realistically couldn’t do much more to keep him alive with the quality of life that he deserved. It was at this point that I realized Willy was terminally ill but not actively dying. This phrase would become the basis for all the decisions we made from then on. We needed to adjust our decision making accordingly.

In June of 2013 Willy was hospitalized for increased seizures. This wasn’t something new. He’d have a growth spurt, or his hormones would change, or a medicine he was one would lose its efficacy. We were always looking for the right concoction of medications that would keep his seizures at bay but not drug him out. I’ll leave out the details but during this hospital stay, it was presented to us once again that we could 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 have the talk about where we go from here and whether or not it was time to consider palliative care or hospice services.

The ACA allows 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 specialty clinic visits. This would make the perfect support set-up for the last few years of Willy’s life. If we could have designed perfect care for our imperfect situation, this would be it.

With our goal being the best quality of life possible for the time that Willy had left (remember – he was not actively dying at this point,) we decided to go home from the hospital on hospice services. Willy would still be able to attend school. We would have support by way of having supplies delivered, oxygen in the home, and morphine and other comfort measure drugs available to us for his care.  All of our medications would be ordered by the nurse who came once a week to check on Willy and delivered right to our home. If Willy became ill, a call to hospice would send out the nurse or the 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 specialty 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 the DNR into Willy’s care plan was no less agonizing just because we knew it was the right thing to do. Taking all of 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 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.

At the time, Willy was attending Haisley Elementary in Ann Arbor, Michigan and they honored his DNR. We had a team meeting to put protocols in place and off to school he went.

The next school year we made the decision to transfer Willy to the Washtenaw Intermediate School District.  They have a specialized special needs program and there were more services available for Willy including a very warm therapy pool which we knew he would love.  We were sad to leave Haisley but, again, keeping in mind quality of life, we knew it was the right decision.

When we found out that the 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 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 school district lawyers could overrule our decision with regards to our DNR.

We decided to still send Willy 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 the therapy and the stimulation they offered there. However, we did start a lawsuit against the district to try to force them to honor the DNR.  The suit was still in progress when Willy passed in November of 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 educational 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 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 their rights to FAPE because of a diagnosis, prognosis, or a medical order.

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 laws allow medical care and educational professionals to team up with the families to 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 in case of a situation with a student. Many districts already honor DNR’s and have put appropriate policies in place. Something as important as this, which really comes down to life and death, should be consistent between every educational jurisdiction in our state. Please work with us to help make it so.

Thank you.

One Year

Tonight at 12:40 a.m. on November 5th we will reach the one-year mark. One year since Willy left this plane to go to the next. Someone asked me a few days ago if it seems like it's gone fast or slow. Surprisingly, I think it's gone fast. For a family grieving the loss of their son and brother we've given it all we've got. I know many will say it's just a date, however, I'm fixated on the terms of time because, in part, that's how my analytical brain works. I won't stop grieving because it's been one year. But to know we all made it through the first year is noteworthy.

As I reflect back on this past year, I realize I'm proud of us. Ever since Willy was diagnosed back in 2004 I wondered what life would look like after he passed. How would we come out? What shape would we be in? It was such an intense 11 years one had to wonder (and I did often) what type of person they'd be after experiencing a journey like this? 

But we've done okay.  Besides a move to Saline and two new houses, the kids both have new schools. They've done great. Grant has an incredibly difficult schedule and he's raking in mostly A's and an occasional B. Gabby's doing well and just finished Level 6 swim class. They've been on more trips in this past year than they were their entire lives. This summer between both families they kids swam, went tubing, went to water parks, baseball games, museums, picnics, Mackinac Island, Traverse City, Holland, and Grant even went on a missions trip with church to Indianapolis.  Grant also joined the cross country team at Saline High School and had a fantastic season.  Although we tried to do things like this when Willy was here with us it became increasingly difficult in recent years. 

We've even been able to have some time to ourselves.  We've all started to slowly get involved in things we weren't able to before. 

I'd go back to life with Willy in a heartbeat. Every late night, every fight with the insurance company, every seizure, every hospitalization, every sleepless night, everything. It was all unequivocally worth it. But Willy's mission here on Earth was over. He came for a time and undoubtedly made us better people. 

So how am I? I have days of intense sadness.  It comes and goes at strange and unexplainable times. There's no describing it. I used to try to stop it by keeping busy and no doubt there's always plenty to do. But now I just let it wash over me.  I embrace it and spend the time remembering Willy.  It snaps eventually and life goes back to the new normal. Even on good days I will never feel the same as I did before Willy passed.  

But I'm enjoying seeing how our lives are unfolding. It's rewarding to see the kids working to do things they couldn't as easily do before. We think about Willy. We talk about Willy. He's still here with us.  It's bittersweet knowing one of your children is gone but the other two are thriving. But it is what it is. We will continue to move forward; one step at a time. 

We are still Team Willy.

The Last of the Firsts

Today is my 46th birthday, otherwise known as the last of the Firsts. The first of every holiday since Willy passed.  He passed on November 5th so I guess Halloween is still in there but I'm not really counting that. Halloween happens to fall in a bad spot, weather-wise, and Willy was usually sick for Halloween.  He couldn't eat candy anyway so what was the point, really? I mean sure, some years we took him and then ate all his candy for him but who really needs that?  Todd and I usually did a divide and conquer sort of thing. One goes with the other two kids trick-or-treating and the other stays with Willy. At least two years that I can remember, Willy was in the hospital on Halloween.

In addition, Willy was starting to get very sick on Halloween last year with the pneumonia that would six days later take his life.

So, meh. I'm counting my birthday as the last of the Firsts.

The Firsts were horrible. Every holiday after a loved one passes is torture. Your memories do crazy things to you.  My birthday last year (2015) was the last time that Todd, Trish, Ted, Grant, Gabby, Willy and I were all together as a family of 7. Thank God for my incessant photo taking or we wouldn't have this photo to document our last time together.

The last time together as a family of 7

I used to love fall.  The smells, the colors, PUMPKIN EVERYTHING...  But since Willy was diagnosed fall was our nemesis.  His lungs couldn't keep up with all that fall brought and we often spent it inpatient with a sick Willy wondering if this fall would be his last. Well last year, it was.

I'm trying to make nice with fall.  Last night I put my fall wax scents my burners, turned on the little fireplace, had some tea, and tried to relax and enjoy. And I did to some extent but I was relieved when it was time for bed - not going to lie.

So back to my birthday..  I work out of two locations and on Monday the one location had a surprise birthday party for me with a breakfast.  Today my co-workers and friends from the other location are going to lunch. I've received some awesome gifts. Tonight Ted is going to get Pizza Hut (my favorite pizza and a real treat because we don't have one close to our house), and then Todd and Trish are bringing cupcakes over. Tomorrow my dad and step-mom, Ted's mom and step-dad, the kids, Ted, and I are all going to a Japanese Hibachi restaurant in Novi. It's been a great birthday week thus far.

But there's always something missing.  No matter if it's my birthday or a regular 'ole Tuesday. Grief has changed me. I've been reflecting a lot over the last almost year as the anniversary of Willy's passing is getting closer. It's been darker than I thought it would be. I don't know what I was thinking it would be like - I mean, my child died in my arms how easy could it be? I thought I would have been more prepared. We all know how that has gone.

But my birthday marks a significant time. I'm another year older. I've had another year on this earth and it's been a good year. Despite grief and maybe because of grief I've had some successes in other areas. There's so much to be thankful and grateful for.

But I made my 46th year without one of my children. It's just not the way life should be. There's something very out of order about a child passing before his parents. Most days I feel like I'm a train with one wheel off the track -- just slightly 'off'.

Most people don't talk to me about Willy anymore. I find this odd.  We can talk about our children who are alive; their grades, their sports, their attitudes, everything. If we talk too much about our children who have passed then we are "living in the past." (Yes, I hear this often from people.)  I don't know who made that rule up. The past, my memories, well, they are all I have of Willy.  I'm going to keep talking about him because I do the same for my other two kids. And so do most parents.

Ted knows this bothers me. He simultaneously listens while I vent and asks me how I am and also says things like "Willy would have loved this!"  I appreciate this about Ted.

This morning, Ted had to leave very early to go to work but after breakfast in bed, he left me a letter. Or course, he wrote it.  I could spot his writing style a mile away but it was from Willy.  He wanted to acknowledge that I was sad about another First and try to put into words what Willy might be thinking right now. I have no idea where Willy is. I have yet to determine how I think the afterlife looks like. But he's somewhere close. I'm fairly certain that the words in the letter are similar to what Willy is thinking and feeling right now.  And it's the best birthday gift ever.

"Dear Mama,

Happy Birthday! 

I know this is your first birthday without me in the house with you, and I know you will be sad.  It's impossible to describe what things are like where I am, so I won't try to do that. Just know that I'm safe and happy.

I'm glad that life for you and the rest of the family is moving along.  I like the new house and how cozy it seems.  I'm proud of Grant and Gabby for diving into their new schools.  And you're doing school too!  That sounds like a lot of work, but I'm happy you're able to reach for a goal like you tried to get me to reach for a toy.

I miss your snuggles and the sound of your voice. I know you wanted me to be safe and happy and comfortable and you - and everyone else - did a great job.  I miss Dad and Trish, and Grant and Gabby, and Ted.  I even miss the dog! - I noticed she was there for a while.  The voices and touches and gentle care all meant a lot to me.  I knew I was loved and I know it took a lot from everyone to  make sure I was taken care of. 

I want you to know that I am with you. I want you to see me in the first light of sunrise, and in the fading colors of twilight.  I want you to feel me in the crisp autumn and the crunch of leaves under your feet.  I want you to remember me in the warmth of sunlight on your cheek or the freshness of newly fallen snow.

I also want you to remember me in the bitter cold of a fall rain or the hard bite of a winter wind.  I want you to hear me in the noise of traffic and the din of a crowded room.  I want you to feel me in the pain of a stubbed toe or the disappointment of failure, because those things are part of life too, and it is life that I want you to celebrate as you remember me.

I don't want you to worry that you're not remembering me in just the right way because I k now you will never forget and that's all that matters.

Life is hard, Mama, and it doesn't always seem beautiful but it is.  That's something I knew better than most and something I hope I was able to teach you.

I love you, Mama, and I am always with you.

Willy"

Back-to-School - Another "First"

Back to school preparation can be exhausting. There are so many things to tend to, plan for, and remember to do -- especially when your kids are starting a new school district! I'm lucky that I have three co-parents to help plan and make arrangements.  Trish is especially helpful with scheduling and planning in a thorough way that I am not able to be. She keeps us all on track and it's much appreciated.

The last few back to school discussions and emails between the two of us have made it abundantly clear that we are prepping to send two kids back to school, not three. In prior years we had to move heaven and earth to figure out who would be home to put Willy on the bus and who would get him off the bus.  Our schedules revolved around Willy and his needs. 

This year our back to school planning has been what most would call "normal". Buying clothes and school supplies and getting haircuts.  Wait. There's no bus staff to train how to suction and seizure watch? I don't have to drive a van load of supplies to Willy's school? I don't have to have the neurologist fill out a ream of paperwork? 

No. Our back to school planning this year has been much simpler. It feels weird. It feels like there's something missing. Or, more appropriately, someone. Willy. 

I love seeing the back to school photos of all the kids. But each one is a reminder that we have one less kid to get ready this year. It's another "first" to get over. 

I'm not looking forward to the one-year anniversary of Willy's passing on November 5th. But in a way, I am.  Only in the sense that there will be no more firsts to get over. I really need the "firsts" to be over. 

A Day at the Fair - Preparing for Launch

Since Willy passed, I've made a concerted effort to spend more time with Grant and Gabby. Turns out, they are rather used to operating independently and don't always appreciate me "hovering." I'm learning how to operate in that grey area where you parent them, are there for them, plan activities with them and give them their alone time as well. 

This past Friday, Ted and I took Gabby up to the Isabella County Fair. Ted's son, William, and his daughter, Elizabeth, both had entries in the fair.  William entered some beautiful artwork for which he received an "A" ribbon and Elizabeth had artwork ("A" ribbon), an original composition on the piano in the talent show (Grand Champion), and she also received the Chester Brown Leadership award. In between different fair activities, Gabby and I spent some fun mother-daughter time together riding the rides and seeing the sights. 

Before she rode any rides, she nervously walked around the midway considering all the different options. I could tell her wheels were turning. Part of her wanted to just jump in with both feet and ride ALL the rides. Part of her was holding back cautiously. We started on the Ferris Wheel which was a big hit.  

 

Riding the Ferris Wheel gave her a little courage so we hit the big swings next.  You know, those ones that fly high up in the air? Yeah, those. By the time we were in the middle of the second ride my stomach was not happy with me. But she wasn't ready to ride anything alone. 

Next up was this teal and purple spinny thing. I knew there was a good chance I was going to puke if I went on it but she was so excited, yet not ready to go on her own. She grabbed my arm and dragged me to the line. We sat tight next to each other, squeezed in by the metal arm that kept us from falling out and becoming a grass pancake. I didn't vomit but when that thing slowed down and started back up backwards I had to fight to keep it together. Gabby, of course, loved it. 

Next up was this spaceship looking thing that used gravity to hold you to a vertical seat.  I tried to tell her she could go on her own but she wouldn't have it. She wanted me to go with her. Once it got going to a certain speed, the floor dropped out. I knew right then that was my last stand. Just as she's getting excited and beaming like I haven't seen her in a while I had to bow out. 

After the spaceship ordeal we sat on a bench so I could catch my breath and swallow down the vomit. She was crushed. She could tell I was not doing well but she kept telling me to just relax and I'd feel better soon. I didn't. I was done. She looked at me with big eyes and said she thought she was ready to try one on her own. She nervously walked up to the teal/purple spinny thing and kept looking back at me.  She looked so small sitting in the seat all by herself.

From that moment on, she rode as many rides as she could and all by herself.  After the talent show she begged to ride just a few more before we hopped in the car to make the drive home.  By that time she was an old pro, running up and down the midway trying to get on as many rides as she could before I said it was time to go.

She needed me that day. She wanted to try something that was a little scary and she needed me to be by her side while she put her toes in the water. She's so independent that she normally shuns any assistance from me.  It felt good to be needed.  It also felt good to see her gain courage as the day wore on. Isn't that what we are here for as parents? To prepare them for the big launch when they go off on their own? Hold their hands when they need it and back away a little when they don't? 

She's 10 going on 30. But that day, for a little while, she needed her mom. 

A Realization: I will Always be a Grieving Mother

I am now 8 1/2 months out from the night Willy passed.  It's been a struggle consisting of some fantastic highs (yes, grieving people can still have fun), and some very dark lows. With very few exceptions I keep my thoughts to myself.  I go into a private place when I want to actively grieve (not just the normal grief feelings that seem to always be present.) Sometimes at night I lie in bed and play Willy videos and just remember. I don't usually tell anyone. Even though my life is great and things are going really well, I feel different than I did on 11/4/15.  I've come to realize I will never feel the same. There will always be this sadness, this heaviness, that casts a pall over everything. If my grief emotions could be explained via a quantitative scale from 1 to 100, (100 being full on grief), some days are 10, some are 50, some are 100... And every single number in between. But there is never a zero. Zero does not exist on the quantitative emotional grief scale. And it never will.

Writing helps.  In addition to writing this blog, I also journal.  I always feel better after I write. I don't make public all of the writing I do. Some is just for me. Some I write here. I have a lot of friends who are in the same boat (darn special needs world!) and hopefully these writings will resonate.  But basically it's my journey and I want to document it all.  I don't want to forget any of it, the good, the bad, all of it.

I had dinner with a dear friend last week.  We had some great conversation and laughs and it was fun to catch up.  At one point she asked me how I was doing with grief.  I very much appreciated her asking that question. I've been surprised at how many people (the majority actually) don't ever ask how you are doing after the weeks post-funeral fade away. I understand it's normal in my world and maybe not normal in theirs.  Children don't die in most people's world so perhaps it's just not knowing what the protocol is. In many of my relationships Willy is just never mentioned unless I bring him up. It hurts although I understand it.

I've also had the "it's time to move on" and "it's time to focus on the other children" and those sorts of things. These things aren't said to be mean and so I am empathetic. I wouldn't know what to say to me either if I hadn't been in this life for so long before Willy passed.

But these sorts of things are not helpful. Obviously I know that it's time to focus on Grant and Gabby who for so long took the back burner. We have all been working hard to concentrate on their needs. The guilt I felt for so long not having the time to spend on them just makes comments like that become salt in the wound. I've said it in conversation and that's okay.  It's not okay for me to be sharing thoughts about Willy and have someone say "well it's time to focus on the other two now and move on."  (Yes, there have been people who have said that.)

I'm also still amazed at how people compare grief.  I have to be careful here as to not downplay other people's grief.  But having your child take their last breath in your arms after a very intense and horrible 11 year battle is not the same as your 95 year old grandma dying peacefully in her sleep after a good, long life. It's just not. Or, God forbid, your pet.  Yes, I had someone tell me about how their dog died after I shared Willy's story.

I try to go to the cemetery a couple times a month.  I lie there on a blanket and talk to Willy.  The last time I went Grant went along. In a nod to a maturity beyond his 14 years, he quietly asked me if I wanted to be alone on the blanket. I told him it didn't matter and that he was welcome to stay if he wanted.  He sat down next to me, without fanfare, for a little while and then left and let me have some alone time with Willy. These moments at the cemetery have become more peaceful than they were in the beginning so I feel some hope here with regards to my grief.

Our lives are good. The move to Saline has been wonderful. It's been fantastic to see old friends and make new ones. Grant has started running with the Saline Cross Country team for the summer conditioning program.  He will officially join the team in August. Todd and Trish put Gabby in swimming lessons at the Saline Rec Center and she's doing wonderfully.  We are all busy but our jobs are going well.  For our Clan, things are good. I wondered what our life would be like post-Willy since he was always the glue that kept us together and it's been great.  There's been a lot of healing between the four adults and we are a cohesive family unit. I have nothing to complain about.

But there's always that dark down deep. It lurks. It's almost impossible to explain unless you've been there.

As I type there are a few parents in my group who have recently lost their children or have taken their children home on hospice to pass.  Some might question why I stay involved. It's like in the beginning of the journey. I learned from parents who had gone on this path before me and then I became the seasoned pro and helped others. My mission is now to help others with the next step of this journey.  My goal is to be honest and present my grief the best I can.  I don't want to be alarming and I don't want to sugarcoat it.

The one thing that haunts me is the last hour of Willy's life.  I wasn't intuitive enough to realize his breaths were getting shorter and there were more breaks between breaths. I knew enough to take a video which I replay and cry. I'm simultaneously devastated and grateful that I was the one who was with him when he took his last breaths.

Willy's last breaths

Every second of that night is etched in my mind as clear as day. I keep forcing myself to work through that night in hopes of some closure because I am tired of it haunting me. He was comfortable. I was right beside him. He was loved.

11/5/15 12:20 a.m.

Saline Hornets! Round 2!

Our move to Saline is June 1.  On one hand I'm still a bit sad to leave Ann Arbor.  Even though Saline is only 15 minutes away it's not the same.  But as we've learned, life changes and you have to roll with it. The moving van is lined up, the utilities have been switched over, and today Todd and I took Grant and Gabby to tour their new schools.

Saline is a very different city than when I moved away. I have yet to decide if it's better or not. It's bigger -- that's for sure! What was the high school (where I went) is now the middle school. The new high school is this very large and fancy brick and glass building that is quite impressive. All the old elementary schools are closed and new ones have been built.  I went in today not knowing what to expect.

I.Was.Amazed.

We stopped at Heritage Elementary first.  Heritage houses all of Saline's 4th and 5th graders. The principal gave us the tour and introduced us to many teachers and staff members. Those who we met were very engaging and pulled Gabby right in.  The school itself is quite neat and has more of a middle school than elementary feel. Everyone assured us Gabby would fit right in.  We left her there for the afternoon so she could shadow the 4th grade class. (Side note: Trish had already arranged a play date for Gabby with her co-worker's daughter, Sofia.  Sofia was in the 4th grade class that Gabby shadowed today so she already has a friend there!)  In one of the classes we visited, Trish's nephew, Owen, saw Gabby and ran up to greet her with some friends.  It felt very welcoming and Gabby had big smiles.

After we left Gabby at Heritage, we drove over to the high school with Grant.  Can I just say wow!  I mean, a building doesn't necessarily indicate how good the academics are but I think Saline High School kills it on both accounts!  We met with Grant's counselor who gave us a tour and helped us start to arrange a class schedule for the fall.  We also stopped into the athletic office and got Grant started with the cross country application process.

Todd got so excited he even stopped into the school store and bought some Saline gear.

I have good memories from when I lived in Saline.  I was worried about the kids switching schools. I'm not saying it will be a perfect transition but after today I feel much better.  I'm really just a mom who wants her kids to be happy and not anxious.  I want them to enjoy school and feel safe and secure in all that they do and are.

I appreciate Ted, Todd, and Trish and our continued pact to raise the kids together.  It's been going really well lately and I think we all have a pretty bright future as a family. All the changes over the past three years are behind us. Although we will never forget our Willy and the grief is still raw, this move is our chance at a fresh start.

Oh, and a special shout out to Grant.  He made the decision to switch to Saline on his own.  We were not going to make him.  Todd and I both told him today that he was very brave to make that decision and that we were proud of him.

Please keep us in your thoughts as we embark on this new journey.