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.  

Orphan No More

Orphans are easier to ignore before you know their names. They are easier to ignore before you see their faces. It is easier to pretend they're not real before you hold them in your arms, but once you do, everything changes.   David Platt

107,918 is a number that could mean anything.  It could mean the number of times my son has yelled mom in the past week while he was down with a stomach bug.  It could mean the number of socks I've lost in the dryer in my lifetime.  Or the number of times I've told my daughter we don't kick the doctor.  Or a random number that I posted to drive you bats.  

107,918 is the number of children in foster care at this time that are legally free for adoption.  Most have been in the system for more than two years and over half are over 6 years old.  Many of the children have special needs.  

This Sunday is orphan Sunday in many churches and November is National Adoption Awareness month.  This month is near and dear to my heart. 

Our family, for those of you who follow us, has been directly impacted by the power of adoption.  It started with one little girl in 1974.  

That was me!  Then in 1978 my parents decided that I needed another sibling.  

Tah-Dah!  One sister added through adoption.  Mind you it wasn't quite that easy, but once you throw a stone into the pond a ripple effect happens.  

In my life this was profound and I wanted to adopt children of my own.  When my husband and I decided to adopt we took a little boy who was abused, born addicted, and not given a very good prognosis.  

Marvin came into our lives like a tornado.  He managed to turn everything upside down, yet I couldn't imagine life without him.  Even when I wonder if I'm going to survive his childhood.  

Cary Lynn came in like a hurricane.  

Don't let that sweet little pink outfit fool you.  That little girl came with an iron will and lungs to match.  People thought we were nuts for adopting her.  I lost my job yet found a piece of me that I didn't know I was missing.  

We don't know the future but we do know that by stepping out in faith and love we broke cycles.  And for the record, I didn't "save" these kids.  We are all born with the ability to change circumstances around us for the better.  It's what you choose to do with that ability that matters.  For some, it's adoption.  For others it may look like something totally different.  

But now back to that number. 107,918.  It looks like a big number, but it really isn't.  There are 255,369,678 adults in the United States.  So if 2,367 people stepped forward there would be no more waiting children.  

It isn't easy, in fact with all the red tape and hooplah I honestly wonder at times how anyone gets adopted.  But for these kids it's all worth it.  

Don't want to adopt locally?  You want to go global?  Great!  There are just as many orphans who need parents globally.  I know many families who have adopted from China, India, the Ukraine, and Russia.  Love doesn't have borders.  

You don't want to adopt but still are interested in helping?  How about fostering?  There are many children who need a safe haven while their world is being shaken upside down.  How about respite for a family who hasn't been able to leave their kids and have much needed couple time?  Gift cards for groceries and meals for the family who lives their lives at therapies, hospitals, and doctor's offices.  Offer to clean, do laundry, or even just call to check in on families.  There are so many ways you can help.  The only one limiting what you can do is you. 

So the question becomes what are you going to do with the ability you were born with? Will you read this and just go back to your everyday life?  Or will you step out of your comfort zone and use your ability to change a life?  The choice is yours.  

"We live in a world in we need to share responsibility. It’s easy to say ‘It’s not my child, not my community, not my problem.’ Then there are those who see the need and respond. I consider those people my heroes.” -Fred Rogers

Settling in, Moving forward

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” -Alan Watts

Well we have joined the dance full force here.  Change is something that is bound to happen no matter what we do to stop it.  One way or the other, it's bound to shake things up.  

Minnesota has definitely been different than Virginia.  And no, not just seasonal differences (No, it wasn't snow in August.  We found out it's an ice rink but it fooled us for a day or so).  

It's also busier and bigger than where we came from.  We are in a neighborhood surrounded by people.  Which I actually like.  I can walk to the post office, store, library and Cary Lynn's new therapy center is 15 minutes from here.  On the flip side, most of our specialists are in Minneapolis or St. Paul and that has been a learning curve with driving in a big metro area.  

Cary Lynn has not always been impressed with her new team (and a few of them I'm still thinking about too!) but overall everyone seems to be on the same page with her care and the direction we are going.  

I miss my friends and my support team in Virginia.  Marvin misses his old school and his therapist who was one in a million.  We miss our family and realize that unless they come here, we may not see them again.  Cary Lynn isn't easy to transport and her equipment needs increase as time goes on.  That's hard for everyone.  

But there have been such good things happening as well. Services are better here.  Respite services are available for Cary Lynn.  She did her first stay at Crescent Cove for the past weekend and had a ball!  

Seriously, we all were busting our humps getting ready for my parents to come this week and she gets a giant unicorn and snuggly blankets.  I was a little envious.  They are probably one of my new favorite things about Minnesota (the unicorn got to come home with us, Marvin said it was a boy so his name is Pete).  

It's been an adventure overall.  Are we happy for the move?  I would say for the most part yes.  It's been bumpy and we still miss Virginia.  But finding out that the kids can have services and I don't have to fight as hard to get their needs met has been amazing.  And the people who have been working with us have been pretty amazing as well.  So we will continue to dance to the beat of change and hope that things keep looking up.  

Evan Adam's Legacy Ride

"The greatness of a community is most accurately measured by the compassionate actions of it's members."- Coretta Scott King

He was a little boy, only 10 years old.  He didn't get to go to prom, get a driver's license, get married, or grow old.  Yet his legacy and his name still live on.  Those who loved Evan didn't just sit on their grief and bury themselves with it.  They made a legacy.  

Every year they choose a family with a special needs child in Louisa County.  They do a motorcycle ride and choose a child to benefit.  They saw my blog and we were blessed to be this year's family.  

The ride took place this past Saturday.  I teased Crystal that she must have ordered the weather because it wasn't 5 billion degrees outside.  

I had her pose by the banner.  She normally loves hamming it up for the camera, but today she was more interested in the people around her.  

More specifically she was interested in all the motorcycles and the people who rode them.  She spent great amounts of time giggling and smiling at everyone.  

Our ride was pretty sweet too.  While the bikers rode in front of us we got to follow in style.  Marvin thinks he may want to drive one of these and own 5 motorcycles when he grows up.  He told us he would build a seat on one for Cary Lynn.  She heartily approved.  

Being a princess is hard work and lots of photos are needed, lol.  She loved the attention but refused to smile on command (story of our lives here).  Of course once the camera was off of her she was all smiles.  But that's the way she rolls.  

Speaking of rolling, the ride was amazing.  We had a large number of motorcyclists in front of us (I want to say about 200, but I may be off some).  It was so cool.  Cary Lynn sang and giggled the whole ride.  She was all smiles.  

We came back and there was music, dancing, and really good food.  Yum.  

She got a little stuffed monkey from some of the riders.  She has named him Bert.  Bert comes with her on her trike and she makes motorcycle nosies riding with him.  

As you can probably see from the picture her day was catching up to her.  We ended up going into the rescue station where she had a giant Mito crash.  We ended up heading home and Cary Lynn slept from about 3 in the afternoon until about 9am the next day. But for all the smiles and all the fun she had it was so well worth it.  She pushed through and gave it 110% and I was so proud of her.  

We are so thankful.  The community and Evan Adam's Children's Benefit made this such a special day for her.  Words fail me on how to thank you all for everything you did for this little person I'm lucky to call mine.  Even though my husband's job has other ideas about our future this is still our home base and our community.  You guys are doing an amazing thing for families and the impact you have reaches far and wide.  Thank you from a grateful family and a very happy and loved little girl.