DIPG makes Super Heroes

Once upon a time I lived the world so many do, a world where pediatric cancer is healable and treatable.  Children smiled in pictures with no hair, and what I understood if very few died.  So untrue…

February 3, 2012 I became a cancer mom, beyond that I became a DIPG mom.  I entered the childhood cancer world with the worst case scenario- a diagnosis of an inoperable brainstem tumor with a terminal diagnosis.  We were actually told that Madeline would take her last breathe, smile her last smile and give me her last Eskimo kiss in the next weeks or months.  For us though… she left only 5 days later.

Childhood Cancer is not what I thought it was before February 3, 2012… it is not always treatable or curable.  Children experience extremely painful surgeries and procedures.  They receive chemotherapies that are dosed at adult strength- some haven’t been changed or improved in 30 years.  The treatments they receive, if they are lucky enough to make it to adulthood, will cause so many detrimental issues.  It isn’t just lovely kids getting better, smiling with a bald head.  It is much, much worse…

This weekend we travelled to Baltimore to visit my baby sister, Molly.  I remember seeing a 6k last year for a foundation that supports DIPG research.  I put it in my brain that next year, if we could, we would go and run as fast as a cheetah- only I hurt my ankle and put on weight so there was no cheetah in me.  We made it.  The Michael Mosier Defeat DIPG Foundation hosted a 6k Superhero event.  Last night they also hosted a dinner in Bethesda for the families impacted by DIPG, a way to meet one another before the morning.  We travelled over to Bethesda and enjoyed a great dinner with so many that have experienced their own battle with the monster DIPG. 

Social media creates a place where we can connect, we can support.  In recent years’ families have a space to share their journey during and after, in that we have all become connected.  We connect, converse, share pictures and those families are on my mind.  We get to feel like we really know one another.  Jenny Mosier gifted us a chance to really meet and put a human to the relationship we had been building in social media.  It was a great night.  I was proud to have my girls along and my Mr. Rick… Madeline’s aunt and uncle even got to meet and connect.  I love the gift of connections…

We ate and laughed, in the moments we connected and conversed about our lovelies in heaven the energy changed.  We all know the feelings, we all know the missing.  We could talk about how our child presented, the life some had in the ‘honeymoon’ period and sometimes about where our children are buried.  We all know the missing… the hole inside our heart and soul and future that will never be full again. 

This morning we got up, albeit later than we meant to, and trekked back to Bethesda.  We donned our Team Maddie’s Mark gear and walked up to the podium to see and hear the welcome and reading of the Super Heroes.  We met up with Lola’s Family, from out ‘Lola’s Heaven’ Best Day Ever.  Lola was today’s Honored child fighting DIPG, she is a superhero.  She is a light.  We caught up and then we took our place at the back of the line, for slow people and strollers.  My sister and brother in law ran the race so it was just us back there.  I was lucky and grateful that Gabriella’s mom, Ellyn, was ready to walk at the back too.  I have watched her journey and advocacy for years now.  I first learned of her daughter Gabriella Miller in the Truth 365 video way back when.  She, at only 10 years old, was amass in knowledge and was bold beyond her years.  She told the person taping her video when asked what politicians need to know- “Talk is Bullshit, we need action”.  Her infectious giggle followed her answer, bringing her back to the 10-year-old part of her.  She was so right, still is.  I loved getting to walk with Ellyn and talk about our girls, their journeys and the fact that is sucks that we met this way.  I don’t think she knows how I admire her…

We finished last, but really I just went for a walk with pretty amazing moms.  I so enjoyed it…

A part of my heart was so glad and felt joy connecting, I felt the energy in that run.  It is the kind that sustains us and keeps us in that moment.  I never get to feel the hard of those moments in them.  I just stay right there in the energy.  I can feel it later.  I can sit back and think and feel it out.  Now I sit…

I revel in the energy of so many coming together, but hate that we all know the story.  The fact that there were so many there reminds us that there are so many impacted with DIPG and loss.  The joy of the energy of those people and runners is laced with the pain of loss and brokenness.  In that loss, I know that God works in the connections, in the building of the brokenness and the caring for the hurt.  I know this.  Today was one of those… amazing and beautiful laced with pain and loss.

I see change.  I see new ideas and research and trials in these years.  I see so much change since 2012 but not enough.  I want there to be a day that the energy of the Foundation built to defeat DIPG has no need, has no more extra energy. 

It is so hard to think that just today I walked with a mom who will ultimately say goodbye to her daughter, and let her go home to Jesus.  I saw a lovely who ran and smiled and laughed but will join God in a time far sooner than we all know she should.  I hate that part.  I love the connection and hate the hurt we all feel, the fight we all battle.  Life… is amazing laced with hard.  It is what it is…

After a 6k and a busy weekend with my sister, Mr. Rick, Uncle Nathan and my girls we are snuggled… enjoying some simple time.  I think we might even squeeze a little Beauty and the Beast in…

Tomorrow we travel and get back to normal- grateful for the experiences and the time together, grateful for the connections, conversations and moments we all shared.  Until next time you DIPG families… I see DIPG research achieving a level that HOPE is word we can use when we talk about it…

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Sunday/Mother’s Day

 

I am not going to lie, today I feel pretty low, heavy and sad.  I woke up this way, in fact I woke up several times feeling this way- I even felt this blah sad feeling before bed.  I am trying all my strategies to stay up and not let the heavy feeling ruin the day my girls planned for me.  I worked out, took a walk, showered and went to Target… I smiled and ate my lovely eggs in bed, I let Lucy massage my feet even though they were freezing and I ate salad made by 2 girls I love a ton.  I am trying…

I don’t really know what the specific trigger is, just that today I miss Madeline.  I wish I lived closer to my sisters so we could have an afternoon of craziness with little ones and one who has a permit.  I see trios of lovelies with their mommas and know that the days of that are over for me.  It’s just us… just my itty bitty family.  I love that they have their trios, their full families.  I know their lives aren’t perfect, I love seeing those mommas being spoiled and cared for.  I love seeing husbands thank their wives for all the building we do, for all the sacrifices we make as moms and parents.  I am so happy to see others happy, I am just sad in my own corner.

I just miss her.

I miss seeing her in the midst of a birthday party celebrating her baby Lucy.  I miss making her costumes and planning her birthday.  I miss the way she smiled at me and the way she loved me.  I always felt like Madeline heard me, like she listened.  I miss that today I only got 2 lovely cards… I wonder what kind of card she would have drawn for me.  Madeline told me over and over her Kindergarten year that when it was Mother’s Day she would make me breakfast in bed, thankfully her sisters have always done that. 

Today is about being a mom and honoring other moms… in my world being a mom means missing a third of the ones who made me a mom.  I am forever grateful for the time and honor of parenting her and my girls.  I feel like I got the coolest and most unique set of girls God ever made- I am sure you feel that about yours.  I am trying to redirect my brain and heart to smile today, to not be sad and not be mad.  My girls deserve my attention and smiles…

It is hard to do all of this, it is hard to live without. 

Today I keep chugging, keep moving.  I keep redirecting my brain to a path that helps me remember good and positive.  I will keep smiling and thanking my girls, and reminding them to not make a mess or stop fighting.  I think I finally get my mom’s request for ‘5 well behaved children’… I used to tell her we wanted to get her something we could buy, that gift is impossible.  Now I get it…

So for now… I get through a Sunday, an important one- but one that is hitting me hard this year.  I will get to bedtime and sleep and tomorrow will be Monday.  I am enjoying the girl’s plan for the day- minus their choice of dinner (all things they like…) and I am grateful to be their mom and help build them as they build me.  I can’t discredit my sad, my missing… it is just here for the day.  My missing part is a part of the deal… part of the time moving on gig. 

I can’t go under it, I can’t go over it… I just have to go through it.

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Happy Mother’s Day to the mommas I know and love… for all that you have taught me and for how you have helped build me into a mom for my girls.  Happy Sunday for those who just need a day of the week… Chin up, bedtime is coming, and tomorrow is a new day.

3 funerals, no wedding.

I will never not break inside when I see my child hurt.  It is one of the hardest part of parenting.  I mean the big hurt, the shoulder shaking sobs that just break my heart.  In those moments, I always just pray I keep myself together for my girls, so they can just feel what they need in those moments. 

The other night, after a very cold baseball game, we settled in to watch a few Golden Girls episodes and warm up before bed.  Amelia went to grab Pinky, her pet rat.  I saw her lean down and open the cage… and look in.  She touched him and he was cold.  She was immediately upset, filled with worry and pain for her pet.  She broke into sobs and I got moving.  I took Pinky out and assured her he had passed in his sleep, he looked so calm.  I wrapped him in a small blanket and handed him to her to hold.  She pet him and felt his hands… the only time she ever felt his whole hand because he usually pulled away.  I grabbed my clay and my ink pads… we sat and made clay imprints of his paws, nose and tail so she would have a physical and tangible keepsake to feel.  I loaded his paws with in and printed them into little cards for her to save, to write all that she loved about him.  She cried for a long time, and woke up emotional.

Through it all I just tried to calm her and reassure her that he was not hurting, that he is with Madeline and she is probably showing off her rat right now.  She asked if we could bury him and I of course agreed.  Lucy has been hanging on to her friends (Jack and Jake) the Hissing Cockroaches who passed for months.  She wanted to bury them as well.  So… we set out to have a funeral yesterday and celebrate the lives of our friends who are no longer here.

It was a process for the girls to prepare final resting places, dig holes, set up chairs for the services and of course write Eulogies.  Just before dinner last night they called Rick and I to the yard for the services, Lucy was the ‘Priest’ and she led to service.  She spoke about each of the pets and how they lived good lives and we all hope they Rest in Peace.  Amelia wished for Pinky that he was as happy in heaven with Madeline as he was here on Earth.  I thought it was pretty profound…

Some might roll their eyes at this loss, but I will tell you loss is loss.  We cannot and should not avoid the feelings associated, the hurt and the missing.  My girls know what it is like to miss the most amazing sister.  They know what it feels like to wake up one morning to not have that skin next to them, and now the fir… or in Lucy’s case the exoskeleton.  Loss is loss, pain is pain.  Not honoring or feeling it is a injustice.  Some kids can lose a hamster or 20 and be ok, to others it is a heartbreaking reminder of moving on without. 

When Madeline died, I learned a lot about how to memorialize and remember.  I try to get to every child and pet to make clay imprints.  I try to get those ink prints… so later we can find them and remember.  I know that having a tangible keepsake can be a priceless gift to someone who is missing another.  I also learned that we all do it DIFFERENTLY, respect the different.  I knew in the moment I saw Amelia’s shoulders sink and heard her words… that I would let her do this the way she needed.  I honored Lucy’s desire to double up on the funeral and lay Jack and Jake to rest… I also looked forward to them not being on her dresser.  When Jack and Jake passed Lucy held each of them in their last moments, she wanted to make sure that when they left they were ok.  She knew her job as their ‘mom’ was to get them to their final place as comfortably as she could.  Now they all lay under my trees… with lilacs and simple petals over top. 

As Rick and I sat and listened to the girls I thought about how thoughtful and compassionate they are.  He messaged me later and told me the same.  I love those girls fiercely, just as I am loved by Him- Fiercely.  I am grateful for all the moments we keep accumulating, I am honored that He gifted Madeline to us for her moments.  My girls are grateful for the moments they had with the pets, kids, they loved.

In our back yard, our little hideaway back yard, now lies some of our missing friends… they will be there for the adventures, BBQs, swinging, bonfires, lawn mowing and laying in the hammock with us.  I love our little retreat… I love my girls compassion and simple faith.  I remind myself another day- God is GOOD, always.

Reflecting on age.

Two times today I have been a part of conversations about aging.  One in the teacher’s lunch room and one at the wine store, both places I love to visit.  It kind of got me thinking about aging and how I see life as it keeps moving.

To age well is a true gift, not in the no wrinkles and no gray hair kind of way- but to get to an old age and still be you is a gift.  There are many, many… many thefts to that gift of ageing well- dementia, cancer, loneliness, Alzheimer’s and of course death. 

I see wrinkles and gray hairs as reminders of the lessons and laughter, pain and joy that we all experience by the time we get to be an older person.  I want wrinkles right near my eyes, showing that I am a laugher… I want hands that show that I worked my butt off to be a mom, a homemaker, a gardener and a hugger.

Today’s conversations reinforced my belief that age is a gift, and getting there is a privilege.  To be 90 or 75 and get around, work and enjoy time, cook for family and have coffee with friends… to bake with grandkids and take care of my list of life things is a pretty awesome blessing.  It isn’t like that for all.  I have seen Parkinson’s and Alzheimer’s, I have seen cancer break down bodies and minds… for some that is the journey.  I remind myself that we don’t get to know the journey, only the right now.  I remind myself that I need to get to my ages content with my life.

We should enter each age, stage, growth and level of maturity content with our life.  We don’t get to see tomorrow, to know that we will be there or be healthy for it… so we just need to be in the now.  We need to live our life how we need to in the moment we are in.  When I am 42, 55 ½ , 64, 72 or maybe even 90 I need to be okay with life.  If get to those days unhappy, unfulfilled, empty, angry or dissatisfied I didn’t do life right.  I need to do life right…

Bare with me…

I used to deliver newspapers, I hated it.  Rain, snow, sleet, Sundays, Easter, vacations… ugh.  My sister and I would split the route, whoever drew the short straw had to do the ‘Far End’ all.the.way down to Ainsworth’s.  Just before the ‘Far End’ was Mrs. Scott.  Back then she was only in her 90’s… with her cute green house, her dress with an apron and her uncanny ability to tell you what was on her mind.  My mom would tell us she better not find out we didn’t help Leah (Mrs. Scott) sweep her porch or shovel the snow.  The thing is if we did more than put her newspaper into the wooden box on her porch, she would be out there telling us she can do it all.by.herself.  One night my grandparents brought us to dinner for Leah’s birthday, in Chaumont for a fish fry.  She ordered a big beer and laughed her butt off.  My sisters and I sat wide eyed and wondering about a 90 year old ordering a beer at dinner.  She lived.  Leah Scott lived exactly how she needed to, until she didn’t.  She didn’t live her life easy, or pain free.  She lived it, until she didn’t.

I often think of Leah Scott and my grandparents and my Aunt Jane.  I reflect on them living.  I miss my grandparents, even today.  They lived into their 70’s, not old but enough.  My grandpa passed away on the first day of college.  He had Alzheimer’s.  He spent a lot of time not getting to be the Lyle he was before… the one I miss.  My grandmother missed him terribly, she battled Parkinson’s and Dementia, waiting to dance with him.  They needed a lot of help in those years but I look up to them so much for living and respecting and honoring one another.  I know those last years weren’t the way they imagined, but I know they did their lives the way they wanted/needed.  I know things happened that hurt and broke them… life is hard.  I also know that they aged and lived well- not all super perfect.  My grandma died with her feet dancing, like her husband was waiting for her to dance again. 

Live it well.  Get to those years and know you did it well- even if it isn’t always happy, be content where you are.  If you aren’t content- change something.  Live today just as you should- contently.  Tomorrow is not promised and it can change your forever plan in a moment.  In moments our ideas of our future can and will be shattered.  Live it well.

I will get to the age that I do… I will be content and wrinkly and brushing my gray hairs.  I will live the way I need to as long as I can, until I don’t.  I know I have ZERO control about how I will be as time moves… whether cancer will hurt my body, dementia will attack my thoughts or I will be blessed with time that I can care for myself for a long time.  I know life is freakin’ hard.

So… for any fearing age- be grateful.  Age is a gift… some never get wrinkles, gray hairs.  We all have hard times, loss, grief… how we live and maintain contentment is a very big indicator of how we live and survive and hurt and cry… at the end of the day we must live it until we don’t.