My Family

My Family

Sunday, November 12, 2017

National Adoption Month

I rarely regret my action but I often regret my inaction ― Avina Celeste

How often do we regret being inactive.  To be silent may be the easier road but it's not often the right one.  Today is Orphan Sunday and National Adoption Month.  Every year I take time to reflect on our family and how adoption impacted us.  

Adoption has changed us.  It's changed the way we see the world.  It's brought us challenges, hardship, and heartaches.  It's also brought more joy than I can fathom.  

These kids have rocked my world.  I could go on and on.  But at the end of the day, they are lucky.  They won't have to worry about where there next meal comes from, where they will sleep tonight, if they will get medical care, and who loves them.  

Today in Virginia there are 1,400 children who don't know these things.  Our state is ranked the worst in the country for the adoption of older children (yay us!).  This year 500 teens will age out without being adopted.  One in four will have involvement in the justice system.  One in five will be homeless.  Nearly 1/2 will drop out of school.

These children feel alone, abandoned, and scared.  Family means everything.  It is our past, present and future rolled into one.  Without having a safe place to fall the future is pretty grim for these kids.  

There is a pretty powerful video put out by The Children's Home Society.  You can watch it here.  Listen to what these kids have to say.  Listen as a kid sits huddled and says that her dad's punches hurt, but his words hurt more.  Listen as the story says that for children who are abused, neglected, and abandoned a safe, loving family is just a dream.  

These kids aren't someone else's responsibility.  They are OUR responsibility.  We can't just hope that someone else will step up to the plate.  










I want you to take a good look at these kids.  They are at this time some of the many children waiting.  Waiting for a mama who will bake cookies with them, to read to them, to be there for them.  For a daddy who will walk them down the aisle, listen to their day, toss a ball around.  They don't want a perfect parent, they just want A parent.  

It's not an easy road, but I can say that it's a journey that you won't regret.  

If you want to learn more about Virginia's waiting children and how you can change a life by adoption contact Children's Home Society.  Click here to find out more.  


Adopt, change a life one child at a time. 

Saturday, September 9, 2017

I didn't think about your daughter

In our house you will find that we are a blend of options in discovering what works best for our kids. You will see things you are used to seeing like medications, equipment, that sort of stuff.  Along side of that you will also see some non-traditional things as well.  Essential oils, my giant textbooks of herbal medicines, and maybe some familiar equipment used in different ways.

You see, I've had to stretch and grow to figure out what works for my kids.  We don't all come out of the same cereal box and things that work for others don't always work for us.  Things aren't always black and white.  They are often various shades of grey.

Recently my son was accepted into a unique study.  A worldwide research project is being conducted to see if a unique treatment can be beneficial for kids like Marvin.  It would help with some of his dietary woes and we were excited to try it.  The practitioner had recently relocated and gave me her new address.  When we arrived this is what we saw.


I drove around the building thinking this was a joke.  There wasn't a handicapped accessible spot anywhere.  So I called the provider and let them know we were here and the building had NO ACCESS!  

They came down and their first words were, "I wasn't thinking about your daughter."  Their last location was accessible and we were able to get Cary Lynn up and down.  Despite the fact that we had seen this person in their previous location numerous times and my daughter was with me every time for some reason it escaped this person's attention that my child was in a wheelchair.  

The next words weren't much better, that this was a pro bono treatment.  Maybe I could find someone who needed community service hours to help with one kid.  They didn't want to treat in their home because that was their me time.  I was rather steamed and wanted to offer a shovel while they were burying themselves. 

Look, I feel like we need to have a conversation here.  You may not think about my daughter or the 2.2 million people in wheelchairs or the 6.5 million people who use walkers, canes, or crutches to get around but maybe you should.  

I'm not saying that every home needs to rush out and become accessible but I would like you to think about how it feels not to be included.  How hard it is on our family and others like us because our kids can't go places.  You may not be able to fix your home but how about finding a place that everyone can go to.  

If you are practicing medicine or holistic treatments think of the large population you are limiting. The people who would probably benefit the most from your treatments have no access to you. Clients that would pay you for your services if they could reach you will take their dollars and go someplace else.  

Bottom line, it's not OK and no amount of apologizing is going to fix that piece of my heart that just got a little more battered.  It's not OK to justify the lack of accessibility by saying that this is a pro-bono service.  Free does not mean that you can get away with whatever you want.  That would be the equivalent of me saying I could rob your home and take your valuables because I am giving you free babysitting.  It's a ludicrous argument.   

We drove for a while in silence.  Marvin piped up, "Mama are you upset?"  I told him I was, but I would try to think about our options.  "Well, I don't really need to do this.  I'd rather go someplace that is nice to my sister.  Maybe we can find something more fun to do, like legos!"  

The study would have been awesome, but you know what?  My kid already is awesome.  Both of them are.  If people can't see that then they are the ones with the real handicap.  

Sunday, September 3, 2017

Mountain Highs and Valley Lows

There is no black-and-white situation. It's all part of life. Highs, lows, middles. -Van Morrison

That is the truth.  When you parent special needs kids you ride that high/low wave.  This past month has been full of mountain highs and valley lows for us.  While I was in church I spent a lot of time thinking about the past month.  The good, the bad, and the downright frustrating.

We've been dealing with our school system.  It hasn't been good.  LCPS is supposed to provide some very basic services to my daughter.  I'm talking about bare bones here.  They basically need to check in once a week and see if she's still breathing.  Not too challenging in my book.  School has been going for a month and right now we have yet to have any services provided.  We had someone lined up but at the last minute this paragon of virtue decided not to do their job.  I've emailed our school board representative but they also chose to ignore me.  It's sad that she has to go without minimal services.  But out here it's really not unusual.  Which makes it even more sad.

Marvin has an MRI this week.  I'm used to Cary Lynn having them but for Marvin this was something new.  UVA wants to check out some "suspicious" items.  They have tried to get his early MRIs he had beforehand, but so far when Marvin became our son his previous records disappeared. What if they find something?  He already has so much going on I really don't think he needs more. He also developed Osgood Schlatters disease.  You can read about it here, but basically it's glorified growing pains.  Fun fun fun.

The insurance has changed here as well.  We've all been moved to something called CCC+.  It's basically an MCO.  I've spent hours on the phone trying to figure out what Drs. are covered.  We also just got a call from Marvin's psychologist's office about insurance.  There is this really big myth that insurance covers it all.  It doesn't.  We pay out of pocket for a lot of stuff.  Therapies, medical supplies, some Drs., and extras.  Those things aren't cheap.  As I'm writing this I've found out my daughter's food supply may be in danger.  If insurance decides to stop covering it that's $3,000 we will have to cough up to make sure she eats.  Little things add up.

My husband works really hard.  I used to work.  I now am a full time medical manager.  I miss working.  Not just for the income, but because I miss adult conversation.  I don't always find fulfillment in Legos, Minecraft, Peg and Cat, and discussing the importance of proper hygiene.  Go figure.  Or just a break.  My family is coming in a couple of weeks and I'm so grateful.  They will provide much needed respite but Colorado is a long ways a way to get the support that we need.

Despite the valleys, our mountain views have been really good.  Cary Lynn has managed to gain about 20 pounds in a year.  We now don't have to see the dietician as often, yay!!  She has had a good stretch of being healthy.  For that we are thankful.  She also is getting home educated (because I can't trust the school system to do their job). and is a feisty, sassy, and lippy kindergartener.  I tell her she's my most difficult pupil and she spits at me.  So we are off with a bang.

We tried school for a little bit with Marvin last year.  After talking with his team, the increase in his appointments, and the need for very tailored learning accommodations he's back at home.  He's doing really well and keeps saying he is glad to be back at home.  Not every kid is going to do well in a school situation.  We've accepted that Marvin is unique and that this is the way he learns best for this season.  Now he's a confident fifth grader and able to advocate for his learning needs.  Plus he delights in showing his younger sister how school "is supposed to happen".

All in all we are marching forward.  We may get knocked down but we always get back up again.  I'm proud of us all.  I'm also thankful for the blessings we have.  The kids are healthy, they are learning. Despite repeated hygiene conversations, I'm pretty happy too.  We will get through the valleys because my kids deserve more time in the mountains.  Here's to hoping we spend more time on the mountains this month.

 

Sunday, August 27, 2017

Freedom




I watched them go away to this place everyday.
They be forced to sit all day with bodies that didn't obey. 
They just couldn't follow the rules. 
So they never fit in at the schools. 

In meetings, IEPS, and emails I'd spend my days. 
Fighting for accommodations in a system set in it's ways. 
Their words were cold, and left me with chills. 
"Why don't you just get some prescription pills?"

I watched their happiness slip away.
Full of anxiety, not wanting to play. 
Daily watching sad looks became haunting to me.
My kids didn't want to be different; they wanted to be free.

Free to stim and free to learn.
Free to ignite curiosity that burns.
To be who they are accepted and loved. 
Precious treasures, gifts from above. 


To be able to learn at their own pace. 
Education is a lifestyle, not a race. 
To embrace uniqueness and set their minds free. 
To explore, learn, and play the way it should be.

We are done with tradition and keeping up with the best. 
My kids aren't made to be still and test, test, test.
I know you may look and feel sorry for me.
But don't, I've done the right thing, I've set my kids free. 





Sunday, July 9, 2017

I'm Good Enough (and so are you)

Never judge someone without knowing the whole story.  You may think you understand, but you don't. 

I saw her in Walmart a few weeks ago.  You know who I'm talking about.  The woman who brings in her three half naked kids jumping from the shopping cart and running around.  The youngest is up front drinking soda from a baby bottle.

I roll my eyes.  I think my mental thoughts and buy my organic fruit.  As I'm walking by other women start whispering and pointing at her.  A few snide comments are said and titters follow.  The woman walks by.  I KNOW she's heard.  She tries to keep her head up but I see it.  Tears.

A few aisles later I run over her son.  Literally.  Because I pay attention (insert eye roll).  He's O.K. He had opened a box of cereal and was happily eating it.  My son and I happen to have an affinity for that magical leprechaun and his marshmallows as well.  I apologize to mom for trying to take her child out.  I smile and tell her that we are addicted to that cereal as well.  We talk.  She's a single mom working three jobs.  She's trying to buy food at the only time she has available.  Her kids are tired, she's tired, and all she wants to do is be at home in bed with her laptop (did I mention she's going to school so she can provide a better life for her kids?).

I'm not telling this story to show what a paragon of humanity I am.  Believe me, I'm not.  Recently there have been a wild fire of stories passed around social media.  Stories that make you stay awake at night and think over all your life and parenting choices.

When did it become OK?  When did finger pointing become OK?   It's been around, that's for sure. Spank them, don't spank them.  Send them to time out, no wait, don't do that!   Did you try an organic supplemental diet?  How about making sure they get this?   Use sunscreen, no wait don't use THAT sunscreen!  Use TV, nope don't use TV.  Computers help them learn, NO TECHNOLOGY IS OF SATAN!!!

Do you have a headache yet?  Are you questioning every choice you've ever made? Are you going back and questioning every choice your parents made, because after all, it's probably their fault and there are about 40 articles that prove it.  I mean, if it's on the internet it's probably true, right?

STOP!!!!!  BREATHE!!!!  Listen to me.

Yes you can spend your life feeling like crap.  You can go to bed at night and worry that you are screwing up your kids.  There are plenty of articles that will tell you that one.  I can list at least half a dozen on how my kids are going to be awful.  I don't spend enough quality time with them.  We don't go outside enough.  I let my son watch TV.  I let my daughter have her IPad.  We ate marshmallow cereal for dinner last week.  My daughter loves sweet tea and right now it's the ONLY oral liquid she will take.  So guess what she's been buzzing on?  So as you can tell my kids are on the way to a life of hard crime and cavities because of the lifestyle we lead.

I used to feel bad.  But now I feel something else.  Angry.  Because it's not OK.  It's not OK to sit on your high hat. I wish the writers would spend less time on those pieces of trash and more time looking at ways they can help out these "fallen women" (I'm open to laundry service and hot meals). At the end of the day I'm doing the very best I can.  Am I going to fall short, yes?  Am I going to mess up?  Yes.  Am I going to push through and keep trying?  Yes.

Guess what else?  You are doing the best you can to. You are a good parent.  You don't need parent shaming articles to make you feel bad.  You are human and you are trying hard.  The people who are closest to you can see that.  And sometimes when the world isn't running over your kid in Walmart they can see it too.

What we need is less on what we are doing wrong and more on grace.  Give yourself grace.  You have a tough job.  There is no book, TV show, article, psychic, or expert that knows those tiny people better than you.  Remember that and give yourself the grace you deserve.  Rest refuel, and get back up in the saddle and try again.  You are a good parent.  You can do this.  I believe in you.


Monday, June 26, 2017

No Magic Bullet

When I speak in conversations about my medically complex kid the listener's eye automatically drifts to the little girl in a ponytail and wheelchair at my side and nods knowingly.

What they fail to identify is the young boy running around and hanging upside down.

Sure, I'll give Cary Lynn her due.  She's not easy.  But even with her rarer diagnosis of Diabetes Inspidus and Dysautonomia, we are still able to treat her and keep her comfortable most days.  I have meds from here to Timbucktoo that we give her, but they work.

Last week I took my son to our Developmental Ped.  I adore her.  She's thorough, spends hours with you, and really hears what you have to say.  This was Marvin's first visit to her but because he's seen her in action with CL he was good to go.

She spent three hours with us.  In that three hours she uncovered a few more issues that we will see more Dr.s about.  Sigh......   But when you are trying to put the pieces of a unique puzzle together you do what it takes.

The one thing she was concerned about was Marvin's migraines.  He's had really bad ones on a regular basis.  Her words were, "I know you said you really aren't wanting more medication, but I have one that is tolerated very well.  I think you may want to think about trying it to see if we can help him feel better."

Ahhhh, my Achilles' heel!  When we have our children all we want to do is protect them.  Watching them hurt or suffer makes a mom feel helpless and miserable.  Bottom line we just don't want our kids to hurt and will move mountains to make it stop.

"I don't know", I murmured, "he just doesn't do well with medication.  We've had so many side effects."  But I was wavering.  I wanted something, just this once, to work.  Marvin was already starting to rub his head, a telltale sign.

"Tell you what, you can half the dose!"  With those words, fate was sealed and I took the prescription home. Half a dose may work OK.  I won't know unless we try, right?

Wrong!!  Marvin took the dose before bed as directed.  The next morning I waited for him to get up at his normal time.  No sound.  I sat down in a weirdly quiet kitchen and sipped my tea trying to ignore the tendrils of fear that were starting to rise in my head.  I sat down at the table stubbornly.  I scolded myself.  Why can't I stop worrying?!  This is ridiculous!  You are a grown woman, behave!!!

That lasted about 5 minutes.  I decided just to peek in and see what was going on.  When I came in the dog started making her "Timmy is in the well noises".  When she makes that sound I pay attention.  I came over to the bed.  Marvin was pale and glassy.  "I don't feel good mama.  My chest hurts."   With an elevated pulse I started making calls fast.  Shannon came in and sat with Marvin. My world was shaken once again.

Shannon took Marvin to the Drs right away.  I got Cary Lynn's supplies and followed behind.  I remember making a call to my mother-in-law and a friend, but don't remember much else.  Except crying.

We were lucky.  Not that this is a huge shock, but Marvin is allergic to this medication as well.  It caused a rare side effect.  His heart was skipping beats.  So he's not able to take this or any medication that falls in this class.  After a quiet weekend and lots of resting, legos, and good books most of the med seems to be out of his system and he's back to his normal self.

I don't think I am though.  It seems like I eternally hope for a magic bullet.  Something that can help him feel better, reduce pain, and bring world peace.  Not too much to ask for, right?  But after this go around I realized that I may need to start thinking a little more outside the box.

There is no magic bullet.  Marvin is unique.  His therapists describe him as a unique exception to the rules of his disabilities.  His Drs describe him as unique.  While I'm always good with marching to our own rhythms, just once it would be great if he were an average joe in one department.  But since Marvin isn't going to change, I'm the one who has to.  I'm going to have to step out of the bounds and find different ways to work with what is going on.  To find a unique way to handle the unique situation we are in.

What I do know is that Marvin is resilient.  His ability to bounce back from the situations life throws at him make him a tough cookie.  We will figure this one out and together we will move that mountain.



Sunday, June 11, 2017

Shades of Grey

The human brain has 100 billion neurons, each neuron connected to 10 thousand other neurons. Sitting on your shoulders is the most complicated object in the known universe.- Michio Kaku


Tell me about it......   The brain is complex.  Add to it one child who on the surface look deceptively "normal" and you have a recipe for disaster.

"He doesn't have ADHD, all boys act that way"
"He can't have Autism, he's social"
"He doesn't have food allergies, let him eat whatever"
"He'll just outgrow that."
"He doesn't have mental illness."

On and on the advice went and still goes.  For children with hidden disabilities life can be more challenging than a child with an obvious one.  Services are openly showered on my daughter but it is like prying a crocodile's mouth open with food in it to get help for my son.

It started young.  I had lots of worries.  I would watch him like a hawk.  Something wasn't right.  I was assured that he didn't have ADHD.  That another child in the class did but not him.  By a teacher misdiagnosing my child valuable time was wasted in getting services.  That's what happened year after year, time after time.  Concerns were brushed aside.

But I persisted and I insisted.  Guess what, people were wrong.  As time passed testing was done. Now that my son is 10 he finally has the services and team in place that he so desperately needed back when he came home at 18 months old.  They say it's never too late, but in some ways it is.  And if it's not late it's going to be harder to correct things.

It's also hard to know where he fits in.  He "passes" in so many things.  He is able to blend in.  When we go places most praise him for being a good big brother.  He plays with the other kids in a game.

But over the years he's learned how to play the game called life.  He puts on a good show.  The outside world doesn't see what happens.  They don't see the child who melts down after spending a day at a family reunion because he's so overwhelmed.  The teachers don't see him come home from school and look at his spelling notebook and watch him cry because he doesn't understand the instructions (to be fair dad and I didn't get what they wanted him to do either.  When I was growing up we brought home a list and studied it.  You know, when dinosaurs roamed the earth.... Now we had to choose from A la Cart activities?!?!).  Or how we've had to teach him to look at labels in all the foods he picks up so he can avoid making himself sick.

I could keep going, but it makes me mad and a bit sad too.  I've long ago come to the conclusion that it's really hard to budge people who aren't willing to look outside the box.  Who are trapped in their notions.  You can't break through glass with a feather.

But it's worth the fight.  I'm thankful for Children's Home Society.  They were the first people to step in and really hear what I had to say.  The ball started rolling.  I'm thankful to the sharp GI doctor in Norfolk who was looking over my daughter and saw my son double over in pain.  The visit that was supposed to be about her weight rapidly shifted to a little boy who stood with tears in his eye and a Dr. who told me, this isn't normal.  For the UVA team who spent days testing him and came back with answers.  For his psychologist who is on speed dial on my phone.  Who helps me understand how to parent a child who has lived through trauma and who gives our family hope.  For his ABA team.  We have the cool Mr. Gabe who comes and plays with him and slips in activities that force him to think about things a different way.  So we keep on fighting, hoping that we can make it better for other parents who come after us.

I'm mostly thankful for my son.  Without him I probably would have gone through life being one of those people who think inside their happy box.  He takes everything I thought I knew about parenting and shakes it and turns it upside down.  Then he burps.  Because there are some things that fall within the realm of normal boyhood.  I don't quite know what the future holds, but I'm happy I get to be along for the journey.