Finding Hope

“Mental health problems don’t define who you are. They are something you experience. You walk in the rain and you feel the rain, but, importantly, YOU ARE NOT THE RAIN.” — Matt Haig

I look over the intake papers and heave a heavy sigh.  This has been a hard season in our family.  Daily we were watching our son slip into trauma behaviors that left us all emotionally exhausted.   It felt like Marvin was taking a path that I couldn't follow him on.  

Of the 74.5 million children in the United States, an estimated 17.1 million have or have had a psychiatric disorder — more than the number of children with cancer, diabetes, and AIDS combined.2 Half of all psychiatric illness occurs before the age of 14, and 75 percent by the age of 24 according to Child Mind Institute. 

This is heartbreaking.  I'm his mom.  I can't fix this.  I should be able to fix this.  But I can't.  I look at the papers again.  The questions are hard.  Are there right answers?  

We tried everything.  In home services, weekly counseling, diet changes, lots of tools to help him.  His room is postered with papers of calming strategies.  He's got the most amazing team of people who have lined up to help him.  

Marvin says when his mood changes, it's like a hurricane running through his mind.  His anger grabs him white and burning.  He looses himself and nothing makes sense.  All he wants to do is break things.  And he does.    He wants to stop he says, but he just can't.  

I fill out the papers.  I fax them in.  These papers will place my son in a day treatment program that works with trauma kids.  We know it's what he needs but I would give anything for him not to need it.  

I have been thinking a lot.  We spend so much time talking about Cerebral Palsy, Mitochondrial Disease, and even constipation around here.  They are part of the fabric of conversation and education of our everyday life.  But the one thing that overshadows our lives is the one thing that we need to talk about the most.  

This isn't Marvin's fault.  But it is our responsibility.  Not just to find support, which is already like finding a needle in a haystack, but to start having conversations.  Honest ones.  There is a real stigma attached to mental illness and that needs to end.  

I'm not embarrassed that Marvin is in day treatment.  Neither is he. Marvin is a good kid who has to live with mental illness.  He spends his mornings on schoolwork and afternoons getting therapy.  We are talking about medications as well.  For that we need a cardiologist on board and we are putting that together as well.  

I know we still have a long road ahead of us.  This program is not a magic fix.  This a long haul.  But we know we have an amazing team who cares about Marvin and our family.  And Marvin is amazing.  He's funny, smart, and has already overcome so much in his life.  I am able to see the light of hope despite the darkness.  And even if I can't fix this, I can share my hope with Marvin until he is able to find his own.  We won't let the darkness win.  

The Purpose of Genius

The letter came with the bills, two fliers, and a reminder that I desperately need to contact a random place for my extended car warranty. I tossed the trash and ripped open the letter.  The words burned in my head and my vision blurred. 

"Mrs. Fields, this letter is to inform you that your son, Marvin Fields, has an IQ of XX and has an Intellectual Disability."  The letter went on with all sorts of reasoning for this and the need for "immediate intervention" so "the realms of hell and chasms of time won't implode".   Well, it wasn't quite worded that way, but it was the general gist of it.  

I really didn't want an IQ test.  Not because I am afraid of the results, but because I am afraid of how the world will view the results and treat my son.  But why does it matter?  Surely people look past that right?  Think again.  

Let me show you how it already impacts my world with my daughter.  Here is what the first grade children did for math work during COVID this past year:  

So this isn't bad.  It's fun, you can use manipulatives, make games out of it, and overall it aligns with state standards in math. 

But my daughter is classified as having an Intellectual Disability.  Even though I pushed for adapted first grade work, as she is capable with supports in place AND has a right to learn alongside of her peers this is what I got:  

Soooooo you can see where I have a little problem with this.  Not only was my daughter barred a majority of the year from learning with her peers the messages this sheet sends are loud and clear.  

You are dumb.  You cannot possibly manage what your peers do.  Let's not bother with state standards because it is a waste of time teaching you.  You need a separate curriculum in a separate classroom away from neurotypical children.  

I don't want that for either of my children.  They have a right to learn.  My son is more than a low score on a piece of paper.  

He's the kid who can take a piece of wood and carve an animal.  He put together my new desk today in our bedroom by himself.  He fixes items around the house.  He draws, paints, and can play piano (he hates the piano, but he's got some mad skills at it).  

At the end of the day my son's happiness, his sense of adventure, spirit and determination are the things I want people to see.  Not some number that will determine whether his bar of learning will be raised or lowered.  Marvin's genius and path he takes will only be limited by his own free choice. And that's something that will never be quantified by a test. 

A Year of Change, A Year of Grace

“Nothing ever stayed the same. There was no force in this world strong enough to withstand the march of time.” – Sam J. Charlton

What a difference a year, a month, or even a day make.  My husband casually remarked that we have lived in Minnesota for almost a year now.  One year.  Has it really been that long?  It seems like we just moved here.  

For my husband it has been a dream come true.  He loves his boss, the people he works with and has overall transplanted beautifully.  He's planned places he wants to visit locally when we are safe from COVID, made plans for the home we bought, and Virginia seems to be packed away like winter blankets.  A distance memory. 

I'm topsy-turvy and always will be. I lost the best support systems.  My special needs mamas, Noah's Children, Better2gether RVA, We Heart Harlie and Friends.  These organizations and people were my lifelines.  The loss of them has been devastating.  I didn't realize how deep my roots had been planted until it was all gone.  You cannot replace people. 

For me it has been a time of growth.  Rediscovering and learning new skills.  Introverted by nature I've had to make efforts to connect with new people here.  To learn new ways of doing things.  And always to advocate for my kids.  I have family here as well.  I want my kids and husband to meet them.  To connect to my roots.  

I don't know how it happened, but somehow I blinked and Marvin turned 13.  He moved from his perfect little school to public education.  Pandemic not included it has been a rocky year.  We moved to a charter school after our local district said they were not equipped to educate him.  He's also had to make new friends, which he does pretty well.  He's growing up and starting to self advocate more for his needs. 

His KMT2E is now O'donnell-Luria-Rodan Syndrome and he has tested as having an ID. Plus possible EOE thrown in.  We struggle to find the support we need with him.  He had an amazing therapist in VA and they seem to be few and far between here.  But Marvin doesn't quit.  He keeps advocating and pushing to find what he needs for himself.  I'm super proud of him.  Changes are hard for him and this year has thrown it's fair share at him.  He keeps trying.  Seeing him fight for himself makes me push harder to set him up for success. 

Then we have my ever spunky, never quits, 8 year old.  She's still beating the odds.  After kicking two doctors, loudly proclaiming her presence in her recent MRI, and giving her new PT a super hard time I would say that not much has changed in her personality.  

She misses Ms. Ruth and Ms. Virginia, her VIP teachers from church.  For her loosing them and Buddy Break has been hard.  She points at old lessons that I couldn't bring myself to throw away.  We have a great church but what made it special for her isn't there anymore.  She's adjusting, she always does.  But I wish I didn't have to give up the very few things that meant so much to her.   

As for her health she's gone to needing oxygen support regularly,  her brain continues to disappear, but at a much slower rate, and she also pushes herself.  When it's convenient.  But still, we take progress around here in any format.  

By and large so much has changed.  I'm hoping things settle down this coming year.  I feel like I have had quite enough changes in the life department, thank you very much.  We are a strong family and will continue to roll with the punches. 

Where did the Time Go

Tomorrow is such a big day.  Not only is it Mother's Day it's Marvin's birthday.  He enters a whole new era.  The little 18 month old John Deer loving baby becomes the 13 year old video game loving young man.  

He was small.  He didn't have a great start.  He walked into our hearts and home so easily.  Somehow the years slipped by as I blinked.  

It's been a really challenging 10 months.  We moved halfway across the country, Marvin started in one school and had to be moved to another school, another concussion, quarantine schooling, a diagnosis of EOE and we bought a new house that we will be moving to next month.  So life really hasn't been slow here.  

But through it all he's done pretty well.  He's made new friends, started advocating for his medical needs, likes his school, and is adjusting to our new normal.  

I'm so proud of him.  The boy who made me a mama and a better person. 

Happy birthday Marvin.  You are so loved.  

The Life I Never Wanted You to Live

A season of loneliness and isolation is when the caterpillar gets it's wings.  Remember that the next time you feel alone.  Mandy Hale

Well I am pretty sure everyone's world has been shaken.  Over the past week I have seen every reaction from people going to underground bunkers to people out licking street lamps to prove we are all overreacting.  (Yes it was gross, no I don't think I will understand people as long as I live.)

Understand that this isn't what I wanted for humanity.  What many of you have had to live is my life.  A choice we made willingly without fully understanding the whole package when we took on this little one eight years ago.   

When I sat weeping in the hospital three days after she came home and we almost lost her as quickly as we got her I was told she was fragile.  Like spun glass, a knock of the shelf of life could kill her.  Even though her will is strong her body is weak.  She needed to be protected at all costs.  I vowed if she made it home I would do whatever it took.  She did and I kept that vow.  

At first it was hard.  It was hard to explain to family that even if you had "been on tamiflu" for a few days you were still putting my daughter's life at risk.  Family gatherings had to be short and small.  Outings had to be measured in pros verses risks.  Often Marvin and Shannon would go to events while I stayed behind with Cary Lynn. 

After a time social isolation became our norm.  I stopped caring and worrying so much about what others thought or felt about it.  It was right for our family and my daughter grew and thrived.  It would (and still does) get lonely at times, but I have embraced what needs to be done and never regretted the choice I made.  

But now many of you have to live this life too.  Some of you are angry, some are scared, and some are probably hunting for a street lamp to lick. It's a topsy turvy time and the world has gotten a lot scarier.  

This is not what I wished on you.  My isolation was chosen.  Yours was forced.  There is a world of difference in this.  I am sorry that you have to do this.  I am sorry that you have to live my life for this season.  It's not an easy life to have thrust on you.  To be an observer and not an active participant in life.  

But the good news for you is that this is only for a small season.  This will come to an end.  The isolation, worry, and loneliness will end.  I am hoping that it will end soon.  That you can go back to work, school, movies, Disney, and large gatherings.  

When you do go back, remember me and many other parents of medically fragile children.  What will end for you we will willingly continue.  I will celebrate with you as you go about your lives but I am hoping that you will remember in the back of your mind that for some of us, this season will continue.  

I don't say this to make you feel sorry for us.  I am NOT sorry for our choice.  I only hope you will have better understanding of why we say no to get togethers, social events and why it's important to keep our kids safe from germs that may be a simple cold for you but lethal to us and cut us some slack.  Our daughter matters.  Her health matters.  So does yours.  Stay safe and we will all get through this together.  

Crescent Cove

So we at Casa De La Fields love to live it up around here.  

Marvin took a nasty spill at school on some ice a couple weeks back.  He did a real number that resulted in an ER visit and follow ups at our local Children's hospital.  (Bonus, we found an awesome Neuro Dr.  How sad has my life become when I get excited about this stuff.....). 

Anyway he's on the mend and except for needing a re-eval for PT, OT, and Speech, following up with Neuro, genetics, and adding 50 more grey hairs to my crown of glory he's pulling through.  

But he needed my full focus this past weeks.  Which can be hard.  I have TWO kids with diverse needs.  I live in a whole new state and cannot pick up the phone and call my Virginia friends to help with Cary Lynn.  I also am on germ lockdown with her and have orders not to take her to any doctors until at least March-ish.  There has been more flu out here than you can shake a can of Lysol at.  

I was kind of in a panic here.  Marvin NEEDED to see doctors.  I NEEDED to take him.  It's not like I could say, "Oh well, buck up son.  I'm sure your full speech abilities will return and your double vision will settle down eventually here."

Enter (Cue the music, whatever you like.  I prefer a superhero theme myself) Crescent Cove!!   Crescent Cove is something special and unique.  With multiple hospice homes in the US for adults Crescent Cove is Minnesota's first and only one for kids.  You can learn all about them here. 

They happened to have a spot for Cary Lynn thanks to a cancellation.  They were thrilled to have their little southern belle stay.  She lived it up.  Here are some of the many pictures I got during her stay.  

 She loves Play Dough and made tons of art thanks to art therapy offered there. 

She kicked butt at board games.  

Puppy therapy!!!  Well, actually pet therapy.  She got to play with bunnies and dogs this stay.  

Chilling with her homies, the squashmallow brigade. 

Music therapy.  She played guitar, sang, and they even had a band show up.  The girl rocked it out. 

More puppy time!! She loves animals. 

So this was a win for her.  Not only did I keep her away from cootie apocalypse (there were people sneezing and coughing on elevators that were so gross Marvin and I took the stairs.), she was kept pretty busy.  

The people there care and they are seriously amazing.  They checked in on Marvin and me during the week, they sent photos, and kept detailed logs (they think she may be having mild seizures and some breathing stuff, but that will probably be a whole new post).  I don't leave my kids anywhere but Crescent Cove is a place I know and trust.  I could focus on Marvin knowing that Cary Lynn was safe. 

There is also another aspect.  Some kids need the Cove for different reasons.  Some kids aren't going to see that next birthday, sunset, or holiday.  Crescent Cove lets the family come and gives them a place to say goodbye.  When the time comes for Cary Lynn (and I pray and plea it's not for a long time) Crescent Cove is where we will be.  

Marvin is getting better.  Cary Lynn is home.  This journey isn't always easy but I'm thankful for the new connections we are making and the people that we are adding to our village.