We've been fired

 “Being fired has some of the advantages of dying without its supreme disadvantages. People say extra-nice things about you, and you get to hear them.”

― Howard Zinn

It started out as a fairly simple visit.  

I had my coffee in hand and was waiting with my son getting ready for the visit to the Complex Care Clinic at Gillette.  It was early and getting a grumpy teen to be cooperative at 7:45am is like asking someone to successfully nail Jello to a tree.  

We had been referred to Complex Care because, well my son is complex.  He has complicated medical stuff.  When we started there we were even paired with a specialist with a disability because she was touted as being adept with kids like mine.  We got the same nurse we had while my daughter was there and I was excited to work with her again.  

After I filled out the paperwork and was assured that "Dr. X" could manage all my son's health conditions we were set.  

The first meeting went well.  She seemed to know what to do and was ready to roll.  We were even promised some new services they offered there.  

Then the honeymoon came crashing down.  Our team wasn't returning our calls and the doctor was floundering.  

The doctor asked for a meeting and then admitted that she had no idea what to do with my son.  That he was complex.  I asked if this was not the Complex Clinic and did they not have "complex children".  She stated that she really delt with "less complex" children.  That she did not know what to do with my son.  

By now my son was rolling his eyes and pretending to bang his head on his laptop.  "Mom, didn't this woman go to medical school?"  "Like how hard is it to say give him an IV when he's sick and Benadryl when he has an allergic reaction.  Mom, do you purposely pick stupid people?"   

Thankfully she didn't catch any of that.  I did rephrase the question and ask about getting some support when Marvin crashes.  Her response was, "I just send people to the ER because I am not comfortable dealing with that."  OK......  

Anyway, we were politely fired from Gillette Complex Care.  It was not the first time Marvin was "too complicated" for a department there.  

I probably should be angry, but I'm not.  I'm just disappointed that someone who went to medical school, spent time learning things medical, and advertises being able to handle complex kids is having a parent spend hours doing research, read medical books, and try to dig resources out of a rock so her kid can have a decent life while she can't be bothered to reach out to my son's main specialist who would guide her in pulling it all together.  

It does stink, but I'm also not going to cry in pillow about not having to visit with Dr. X anymore.  I could find better ways to spend my free time.  Like trying to figure out where missing socks go around here.  Or discovering a cure for grumpy teens.  

My son deserves better.  

POTS sucks

 "I'm sorry I am such a burden."  

"Marvin you are not a burden.  You cannot help having POTS.  The only time I find anything about you difficult is when you keep forgetting your shoes and I fall over your size 27 clodhoppers for the 8 millionth time." 

These are the conversations we have.  Five steps forward and five steps back with a chronic illness that really doesn't care if you have plans.  An illness that just when you think you are in a good spot, it sneaks out from behind and hits you upside the head. 

The good news is that thanks to a port, regular IV fluids, and medications he's probably more stable than he has been in two years.  But even in stability we still have blips.  

We had one this past weekend.  We came home from an errand and he went to lie down.  The dizziness, sweating, and seeing black spots tipped us off that he needed fluids and salt fast.  He got them in but still needed more.  I called the on-call nurse for fluids.  Should be a simple fix right? 

Of course not.  I spent the next three hours going back and forth with the on-call intern about what to do.  Of course, I got what we needed, but geez, why does it have to be so darn hard? 

Marvin's doing better, thanks to Mom not taking no for an answer.  I've also sent a long and detailed email about how we need a better plan in place for these things.  I just don't have time to fool around with this nonsense.  The kid has plans and the sooner we have better medical plans in place, the sooner he can keep going out and conquering the world. 

We Don't Know What the Future Looks Like

 I can't speak for the future.  I have no crystal ball.- Micheal Jordan

That is certainly true.  For example, if you had told me one year ago that Marvin and I would be sitting at our local community college discussing PSEO classes, I probably wouldn't have believed it.  

Yet today that's exactly what we did.  

Somehow the kid, who in preschool had a teacher who said he didn't have a lot of potential because of all his behavioral problems, registered for an on-campus tour and drug me down there.  Technically, I'm still his ride, but sitting there and watching him scratch down a few notes and calculate all the big bucks he might make if he decided to move forward with heavy-duty truck technology kind of made me a bit teary.  

He's come a long way.  He still has medical issues and requires some support, but at the same time seeing how far he's come just never ceases to amaze me.  

I don't know what his future will hold, but I have no doubt that whatever it is, it will be amazing.  

Marching to our new normal

 The only normal people are the ones you don't know very well-Alfred Adler

Well normal would not be something we are well known for around here, but our not-so-normal is becoming something we are getting used to.  

The big hulking human (well at least to me, I'm 5'2", and everything over that is huge) has decided to keep his doctors scratching their heads.  To be fair, he always had medical "stuff", but it was only in the past 3ish years we got names to them.  POTS and MCAS have been the all-star line-up.  

The worst part was getting shuffled around and blown off.  We even went to a highly recommended pediatrician and she suggested we put my son in an eating disorder clinic.  Yeah, I'm sure that would cure POTS in a heartbeat.  

So anyway, my child WITHOUT an eating disorder finally was seen by a specialist who knew POTS and teamed up with our local cardiologist.  It was magic and stuff started happening.  They actually listened to Marvin and came up with a plan to help him. 

Marvin has a port now and gets IV fluids twice a week.  He is on specialized medication to help his MCAS.  For the first time in years, we have something I had not thought possible.  Stability.  

At his doctor's appointment, his specialist commented that this was the first time in three years that Marvin was stable.  Not only stable but growing and thriving.  I wanted to hug the doctor but he said he hates people, so I just shook his hand instead.  I'm pretty sure he washed it after that.  

No new medications, no new therapies to add for this at least, and NO VISITS for 6 months. I am beyond thankful.  

The one thing I have learned with my kids is that you can't give up.  You have to fight.  Even when you are worn out, just keep fighting.  Because Marvin deserves more than subpar services.  All of our kids do.  

After a longer than normal pause........

“When you feel the pressure to respond.. know that it’s not the right moment to respond.. pull back and pause, reflect, re-think"-Jaya Bhateja

It has been a while.  I kept telling myself that today I write something.  That today kept getting pushed back over and over.  

Honestly, my heart hasn't been in it, and after losing Cary Lynn part of my voice died that day as well.  I know that sounds incredibly melodramatic, but it's true.  She was a tiny human, but she made a big impact.  

She still lives on.  In the organ donations, the speeches I give about her impact at local organizations, and in a nifty article in the Journal of Pediatric Ethics. Also, she is part of the Born Able book series. She is enjoying a highly active afterlife, which I believe suits her just fine.  

As for the rest of us, life has never slowed down.  I think it was a well-meaning, but mistaken assumption that things would be "quieter" after my daughter passed and that I would get my well-deserved parental rest, sitting quietly on the sofa eating bon bons and watching bad reality shows. 

With another medically complex kid in the home, my own health issues, two dogs, a husband who changed jobs, and no health insurance for a month while things flip over, and my advocacy work I think I am just as busy now as I was before.  If not more so.  I have told my husband at this point I will rest when I am dead.  With my luck, someone will track me down in a seance and remind me that I left that load of laundry in the washing machine and what should we eat for dinner.  

Anyway, I think life will always be busy for me.  When self-care is mentioned by my medical team I snort and ask when they are going to come to my house and take care of things so I can do this mythical ritual that they speak of.  Although not having insurance this month has been great, because they can't bug me so maybe I will consider that my self-care moment.  

I'm going to try to get back into writing more.  A good friend and I talked about it and I realized about a week ago how much I miss it and how many things have happened in the needed pause.  Thanks for being patient with me while I pause.  Hug your family tight too.  Tomorrow is never promised.  

The Long Winding Road

Not Everyone Will Understand Your Journey. That’s Fine. It’s Not Their Journey To Make Sense Of. It’s Yours-  Zero Dean

That's the truth of this roller coaster ride we have lived on for the past year.   Cary Lynn has more than kept us guessing and hopping.  Every time I opened up blogger I would find myself just staring at a blinking cursor.  What do I write?  

After my last post, big surprise, we ended up back in the hospital again.  

Sigh.....  

At that point the doctors had a serious conversation with me.  First the floor doctor, then pulmonology, then genetics, and finally her Palliative Care team.  

It started out the same way.  Pulling up a chair next to me, getting out tissues, wringing hands and awkward throat clearing.  An uncomfortable pause.  Shuffling of feet.  The hum and buzz and beeps of machines.  

"Mrs. Fields, we can't keep going on.  Little Cary Lynn should be at home, not here every month.  This isn't quality of life for her.  There is nothing more we can do.  Why don't you take her home and enjoy your time."  

I stare back and glare at them.  My eyes hold anger and accusations.  All these pretty speeches about we are going to fight and lick this.  

"What do you mean?!?", I glare harder, "What happened to we are all fighting and never giving up?  That you have this all figured out here??  What am I supposed to do, take her home and let her die?!!?" 

The silence that followed answered it all.  

Apparently, yes, that was what they wanted me to do.  Not one of them could meet me eyes.  Cowards, every last one of them.  

So we took her home and signed hospice papers two weeks later.  I was still mad and not on super good terms with our fearless team, but honestly Cary Lynn has always been a medical mystery.  This isn't the first time the world has thrown in the towel.  

Meanwhile, we were just trying to figure out how to pick up our broken hearts.  Trying to help our son understand this new season.  Nights of him crying about the anxiety of it all.   Managing our own pain.  Waiting for the shoe to drop.  

Once again, Cary Lynn had her own agenda.  While hospice breathed frequent messages of doom and gloom Cary Lynn started to do something they didn't expect.  She decided to live.  

That really looks like a kid who is on her last legs, right??  

Then she really blew their socks off.  

My baby turned 10.  

Then she had the audacity to make it to Halloween.  Gasp.... 

So at this point the medical establishment admits that they may have been a bit wrong on her expiration date once again.  

Don't get me wrong, she's got a lot going on.  We are also still in hospice.  She has had some hitches, but we are all learning how to work through them.  She still has mito and pretty weak lungs and unhappy kidneys.  But despite it all my little one continues to fight back.   

As for the rest of us, we are still moving forward.  I'm planning ahead.  For Thanksgiving, Christmas, and New Years.  I am positive that Cary Lynn will be there.  I won't let fear of the unknown define us.  That's no way to live.  

My daughter isn't a quitter.  Neither am I.  We will meet the future head on, no matter what it holds.  

Sorrow and Joy

 We could never learn to be brave and patient , if there were only joy in the world- Helen Keller

I'm sitting in the kitchen on a hot June night.  It's a typical evening.  Marvin is yelling at his video games.  Cary Lynn is snoozing.  She's been on sleep strike for 5 days and it finally has caught up with her.  She sounds like a big bumblebee.  

I'm hoping that I can finally write everything that has happened since December.  Every time I sat down to write a post I either started to cry or have such vivid flashbacks I get physically ill.  But I can't pretend away the last six months.  They stare at me in the face every time I look at my daughter 

It started in December.  She was more lethargic.  She started to swell.  We went to doctors, pulmonology, and our palliative care team.  I was getting worried.  She was coughing up blood and had unending nose bleeds.  The doctors would say the same things over and over.  "She's fine.  She has pneumonia.  See, the X-rays show atelectasis. Have her take this, she will be fine."  

Finally one of our palliative care nurses came over after I begged him to just look at her.  She was so swollen and sick.  On a cold winter day he told us to take her to the ER.  So we went. 

She was sick and weak.  Her oxygen setting went higher instead of lower.  The floor doctor sat outside our room and put his face in his hands and just stared at the keyboard.  Our palliative care team came in somber and grim. 

"You're not a bad parent if you choose not to intubate her."  They said this gently to me and looked with sympathetic eyes.  But she was fighting.  Fighting to breathe, fighting to live.  I couldn't walk away.  

So we intubated her and found out that it wasn't mucus in her lungs.  My baby girl had a pulmonary hemorrhage and her lungs were saturated with blood.  Her platelets and hemoglobin were at record lows.  She was intubated and got her first of five platelet and six blood transfusions.  

During this time genetics, infectious disease, hematology, nephrology, and cardiology joined the party.  Cary Lynn's heart and kidneys had taken a huge beating and she needed support.  These were dark and scary days.  I would ask why and no one could tell me.  I don't know was the answer over and over again.  

But she started to mend and fight back.  Hard.  The team though for sure she could be extubated and we could go home.  We tried.  Twice.  Cary Lynn's body was just worn out from being so sick for so long.  So we made another really hard choice.  

Cary Lynn got a tracheostomy tube and a ventilator in March.  We spent Valentine's Day, St. Patrick's Day and Easter, over two months in the hospital.  It was scary long and hard.  But Cary Lynn was better right?  

Wellll, I didn't quite think so.  There was something still off.  I asked hematology why she wasn't rebounding in her numbers.  I got a lame butt song and dance.  The brush off.  They told us to go home, she would recover.  

Annnnddd one month later......

So that was about the time Children's specialties decided that Cary Lynn wasn't going to get magically well with a trach.  Gee, go figure..... 

Anyway, we spent another two weeks and in that time she got a port, bone marrow biopsy, more transfusions, and lots of labs.  This time we got some answers.  But not great ones.  

Cary Lynn has Mitochondrial disease.  She has a depletion, which means her body simply can't keep up with her energy needs as she grows and develops.  She has honeycomb patterns in her body.   Genetics is working to figure out exactly what mito she has, but we may never know.  

Here is what we do know.  Cary Lynn gets sick and then her body doesn't have the energy to keep up.  So it simply refuses to make platelets and red blood cells.  It focuses on trying to fight off invaders, which causes a dip in her numbers.  We also know she's much weaker and more frail than she was a year ago.  Mito is a progressive disease that is killing my child.  I can't fix it and it breaks my heart daily.  

She can't physically keep up.  Having a trach and vent take some pressure off her body and allow her focus her limited energy on healing from another round of pneumonia.  Her other labs fluctuate and we make changes in her diet, meds, and routines almost daily.  She can no longer do many of the things that would be helpful to her.  Finding out that intensive physical therapy sessions have been shelved indefinitely was another hard pill to swallow.  

But I also know this.  Even if our time is short she's still Cary Lynn.  She still loves driving her brother crazy.  Playing with her bunny.  Eating cotton candy.  Watching Daniel Tiger and being read to every night.  Unicorns. 

Shannon and I are just taking it day by day.  Sometimes we just take it hour by hour or minute by minute.  I'm spending time making all the memories I can right now.  Because we are never promised tomorrow.  So we are making the most of every day and finding the joy and blessings in the midst of these uncertain days.  

 

  

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.  

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.