Westward Ho!

Life keeps moving, and to try to stay still is like trying to hold grains of sand in your hand- Linda Cardellini

Linda makes a good point here.  We can't stay still no matter how much we want to.  Plus what she forgot to add is that all that sand will just end up on my minivan floor and in my house where I will be cleaning it for months.....

When my husband's company restructured his main team moved from Virginia to Minnesota.  Things changed and we needed to change with them.  So now we are moving to Minnesota.  

I have a love hate relationship with change.  When my husband tried to pump my memory for any Minnesota recollections (I was born there and lived there for about 4 or fiver years) all I could remember is snow and bees.  Not an incredibly promising wealth of information here.  So he gave up on me being helpful.   

There are things that excite me.  Schools are good up there, I've been talking with our new school district and they have been amazing.  I'm cautiously impressed.  They have a really great hospital for complex kids and there are no waitlists for services.  Those things bring me hope that we will be able to get the kids' needs met.  

Then there are the things that flat out terrify me.  My kids have good teams and therapists here.  They took forever to find but once we did they blossomed.  My support base is here.  These are the people who are walking similar journeys. They get what we are going through.  I can call, text, send smoke signals and they are there.  They are irreplaceable.  And it's hard to leave them.  

But I'm strong and resilient.  So are my kids. I know we can do hard things together.  So we will go forward and continue hoping for things to keep looking up.  This isn't the end of the story, only the end of the chapter in our life journey.   

Happy Mother's Day From Beirut

"From all of the professionals here I want to commend you for taking on this responsibility."

I squirm uncomfortably in my chair while the "responsibility" contentedly plays with her doll and rolls her eyes.  I never quite know what to say when people act like I just done the ultimate act of sainthood.  Bless them with lands of sheep and cattle?  Say, "Why yes I know we are better than the average human how walks the earth.  Our household overflows with milk and honey."  But I just squirm and wish the earth would swallow me up. 

I get tired of being told that my life is tulips and windmills or that God only gives "special children to special people".  Horse manure!  

In truth, we did make a choice.  Not once, but twice.  We choose two kids with dynamic needs.  But I didn't go in with my violin and sob about how they need a "special mommy" who would pave their walkway with gold.  We adopted them because they were a part of us we didn't know we were missing until we met them.  I didn't "save them".  We wanted kids and we wanted to adopt.

I was and am a regular mom.  I'm just a regular mom who happens to have kids who need more than regular kids.  I'm in yoga pants at 5am getting meds ready, blending food, and planning what therapy exercises are on docket for the day.  Not because I'm Saint Amy of Bumpass, but because this is our normal.  This is what we do.  

I'm not special.  I'm impatient, have a strong type A personality, and would rather everyone just do it my way in the house to save hours of trouble (ask my husband about that, ha!).  

I'm not the mother I thought I would be, but like so many other moms we have become the moms our kids needed us to be.  We juggle doctor's office visits instead of playtime, argue with insurance, ask questions and spend hours researching medical conditions.  We are regular moms who have learned how far we can be bent without breaking, cried in hospitals, cheered every inch-stone, and learned to never give up when so many other do. 

I live in a landmine of medical diagnosis, scary outcomes, and lots of caffeine.   The last tulips I saw were dead and the windmill blew down in our hurricane lifestyle.  

I'm not a saint, I'm not special, I yell at my kids.  I forget that my son needs school supplies and wait, how many days since I changed bedding??  Or ask my son about the sentences he has to write or ask my daughter about how I have the nerve to make her help out around the house and interrupt her I-Pad time.  

But I am just the parent my kids need and in case you need a reminder so are you.   

Happy Mother's Day.  

Life Incompatible

"You're little girl went to Atlanta and brought back the flu."

I sat in the pediatrician's office and tried to take it in.  Here was Cary Lynn playing and smiling with the flu.  The happiness didn't last long.  In under 24 hours she went from playing and singing to fighting to survive.  

In the ER her oxygen was low.  X-Rays showed pneumonia in addition to the flu.  I was terrified.  Our hospice team stayed with me for the unfolding nightmare.  A DNR was brought up again.  Most of it was a blur, I do remember texting Shannon saying it was pretty bad, please come.  

Its always scary to have your child in the hospital.  For me, it's even more of a nightmare.  I never know if this is the last time.  Will this be the time I push an empty wheelchair home?  All I could do was hold that little hand and think just keep breathing baby, just keep breathing.  

We were told that if she stopped breathing she couldn't support a trach.  We were told that she wasn't life compatible.  We were told that we should think of how we wanted her final moments to be.  

All I wanted to do was scream, NO THIS ISN'T THE WAY HER STORY WILL END!!!  

And it wasn't.  In true Cary Lynn fashion she made it home 4 days later.  She was on oxygen but she was home.  

Recovery was slow but steady.  Cary Lynn fought and won.  Because she's stronger than people give her credit for.  

I was also thankful for everyone who stepped forward to help us out.  This was a time when we needed support and so many came forward (at a safe distance, I didn't want to share the flu!).  My parents came out on a scheduled trip and getting that extra space to breathe was so wonderful.  Not to mention the extra spoiling that took place. 

Nothing like being held by our favorite grandpa.  She adores the attention!

This was a hard admission.  Not that any of them are a walk in the park, but this one had much scarier undertones.  Being told that your kid isn't a great candidate for life wasn't incredibly comforting either.  But Cary Lynn is a fighter.  She continues to overcome ridiculous odds on a daily basis and for every she won't, she does it just to prove a point.  

I'm proud of her.  I'm proud of how freaking amazing she is and how she just keeps going even when the world doesn't give her a fair shot.  She may always be considered incompatible with life, but no one gave her that memo so I'm going to just let her continue to shine and show the world that she isn't going to throw in the towel anytime soon.  

Atlanta Wrap Up

We went down to Atlanta this week to see a specialist that one of our UVA doctors love.  She told us that this woman would definitely be able to help us find some answers in our journey.  

I frankly balked.  I'm feeling a little "journeyed out" with both kids and felt like what we were doing was working.  But many people who saw this specialist raved about her and how helpful she was.  Then my husband jumped on the train so we went.  

I refused to make this trip about another doctor.  Since Marvin had spring break we decided to have some much needed fun.  I called up the aquarium and asked what they would recommend.  The lady gushed about the joy of being up close to a 26 ton whale shark.   I told her that having my daughter eaten before the appointment may not be the best thing.  Luckily she caught on I was kidding and said they only feed them children on Fridays so we were good (gotta love someone who can dish it back to me!).  She then said that we could pet a penguin.  I was good with something that was under the ton weight limit.  

 The only shark I can handle and be OK with!

 She had to bring Seahorsie!  He got to meet his family that day.  

The whale sharks.  They were huge!

They didn't let us take pictures of the penguin experience.  We met a very nice penguin, Cary Lynn got to pet her.  She loved it!  The penguin wasn't too sure about Cary Lynn.  Or any of the rest of us.  They had to bribe her with tons of fish to get her hang with us.  

We also took a trip to the American Girl Doll Store.  I called ahead and Dolores gave us the red carpet treatment.  Cynthia Arvella (Cary's doll), got her hair done and her ears pierced.  Cary Lynn got a crown, a card in Braille that said Welcome, and got to hit and play with every noise making toy in the store.  

 Cynthia and hairdresser

She was so excited to be there!  She squealed and laughed the whole time!  

Then we went to the doctor.  Dr. Kendall's a super sub-specialist who has 25 years of working in Metabolic, Mitochondrial, and Inherited Disorders.  She spent a lot of time on the paperwork we sent in prior to the visit and we were there a good chunk of the afternoon.  It was a lot of information to digest and take in.  Here's a summary of what we learned.  

-Cary Lynn has a lot going on and it's almost hard to untangle one system from the other (which we knew but it was different to see all the charts, diagrams, and pictures laid out and have everything broken down.)

-We need to have specific mitochondrial protocol in place to keep her feeling and doing her best.  Their are times of day that are better for her than others.  She needs extra time to rest and we may have to cut back on some things.  I'm OK with this and to an extent we already try and do this. 

-Surgery, sedation, and recovery protocols need to be in place.  I have lots of paperwork for her medical team.  

-We need to start on something called a mito cocktail.  No, nothing fun for adults.  This is the name given to a variety of vitamins and supplements which are commonly used by adults and children who have been diagnosed with mitochondrial disease.  Mito can be responsive to these and they can possibly help make her feel a bit better.  

-Her brain.  Well it's still disappearing.  This one tends to be a stumper because it's not normal.  It could be Mito.  It could also be several other conditions.  None of which are great and we can't fix any of them.  Dr. Kendall said she couldn't give us a timeline on this.  If she could I would have been super amazed but I wasn't expecting her to have the answer on it.  

-We have orders for a spinal tap.  This can give us information on possible brain issues.  However because Cary Lynn is complex her team is a little skittish about this.  They have sent their concerns to Kendall and asked if there was something a little less invasive that could be tried first.  

Overall I learned a lot.  And I'm still processing.  I wish I could say that we went down, got a magic pill and she's going to regrow her brain, but I can't.  We will just keep moving forward and doing our best.  We also won't stop pushing Cary Lynn to be her best.  Her diagnoses don't define her anymore than her hair bows do (though her hair bows are awesome!).  Her spirit, personality and fire are what make her who she is.  And I wouldn't have it any other way. 

KMT2E and other alphabet soup

It's so much easier to write about medical conditions than mental health for me.  I don't know why, but it just is.  Maybe because it seems like such a taboo thing to talk about.  When I tell people I'm taking Cary Lynn to a doctor or specialist it's another day at the ranch.  It's accepted and understood. 

When I tell people I took Marvin to the Virginia Treatment Center for Children or his psychologist I get "the look".  And questions.  "Why does he need that, he's fine?"   "Marvin doesn't have problems, why are you taking him there?"  Or my favorite one tossed out by someone close last weekend, "If you take him to enough doctors of course they are going to find something wrong with him."

Let me set the record straight.  Marvin asked to go.  Things weren't feeling right to him and he was scared.  He did the right thing by coming to daddy and talking to him.  He lied on a recent eval done by our county because he wanted them to like him and not think he was weird.  Then he got upset he lied and talked to daddy.  Then he asked to go get some help and he told Dr. Al-Matteen about it and felt better.  He followed up with Dr.  Killgore and felt even better.  He's in good hands and has a team that cares about him.  And dog gone it, I'm proud of Marvin for saying that he needs the help.  That was brave.  

In other medical news our family has been joking around about Marvin's "genetic bloop" otherwise known as KMT2E.  Apparently Harvard, MIT, and the Swiss (the people, not the cheese) have been taking this a little more seriously and done some write ups.  I contacted Harvard and we are going to be in upcoming studies.  Nothing big and dynamic, just more paperwork.  What surprised me was that a lot of Marvin's health conditions tend to be common with people with the KMT2E.  It hasn't changed what we are doing but it's kind of nice to have some answers.  

I'm not going to lie, it's been kind of a stressful roller coaster ride over here.  But I feel like we are making some honest to goodness progress and Marvin is rocking it like a boss.  I feel like I'm in new uncharted territory but I've got a good team and to quote Dr. Killgore, "Marvin won't fall through the cracks. Not with you there to hold on tight."  So I'll keep holding on tight and we will pull through.  

Peak Moments

Today in church the sermon was about peak moments.  A moment in time that is crystalized and defining.  They may be good or bad.  

This past year we have had so many peak moments. I'd love to say they were all dandy, but to tell the truth it was just a hard year mostly.  Our family went through some serious dips in the road.  

One of the hardest peaks this year was our hospital stay.  

She hadn't been so sick in such a long time.  We've had a record number of ER trips this past year but we always got to go home.  This time was brutal.  From the DNR form to just watching her struggle to breathe and live.  Putting on a brave front for Marvin.  

We went home with more medical equipment and a grim reminder of how medically fragile she really is.  

The other peak has been Marvin's health.  He's been having more pain and we've been trying to fix him.  He had hernia surgery and needs to make a lot of dietary changes that haven't gone over well with him.  It's also been challenging to explain and have others understand that he has needs too.  

Then I've been trying to take care of me too.  I've had health stuff and it's hard to take care of me when the kids need so much care.  I'm kind of toast.  

This past year was hard and the moments have probably given me more ptsd than joy.  But we are working on moving forward in courage.  Both kids are fighters and I can't lay down in my fear and grief.  Here's to hope that 2019 is a better year for peak moments all around! 

Good-bye 2018

Well to say it was a wonderful year would be stretching it a tiny bit.  

It wasn't horrible, but at the same time I'm not really sorry that it's gone.  This year has thrown us some big curveballs and I'm really ready to wrap it up and move on to 2019.  

This little human has managed single handedly to give me more grey hair than I care to count.  From disappearing cerebellums, do not resuscitate forms, mitochondrial disease, learning to pull out her g-tube and  unbuckle her carseat while I'm driving things are never boring around here.  

It's been a bumpy year health wise.  We just don't know a lot of why she has picked this year to have massive health malfunctions.  I'm guessing she stays up at night and discusses things with her plastic chicken.  I'm sure the two of them have it in for me! 

Marvin decided that he needed some more things to keep me busy as well.  He's been diagnosed with gastroparesis.  Basically his stomach doesn't move the food through well.  So it kind of hangs out there.  We have been trying medication, but it takes a while to fix things and he and I both want it fixed yesterday!

He's been having other stuff as well and we just keep working on him.  He tries really hard but sometimes it's hard for others to see that.  He's going back for a neuropsych eval in February and is going to be working with a trauma Dr. at VTCC in January.  Mental health is hard to access in our state for kids, but we keep pushing because Marvin needs the support. 

I would honestly say that this has been our most challenging year in a long time.  It wasn't all woe and tears, but it was hard.  I am so thankful for our friends who pulled us through and were there for our family.  I'm thankful for Noah's Children and their workers who have gone above and beyond in emotional support and medical care.  

I'm thankful that we have made it through another year.  We may be a little banged up emotionally, but it's only made us stronger.  I'm also looking forward to 2019 and hoping for a much better year!  Here's to hope and a bright future!