Invisible Solider

Dear Solider,

The other day I saw you at the grocery store.  You were chasing your little one around.  A lot.  You looked tired.

"Travis, put that down!!" "Travis stand still!" "Travis stay here!!!"

Then you turned your back to load your groceries and Travis came up to me.  He held his hands up to me and gave me a hug.  Then he proceeded to load ALL the Hershey Bars in my shopping cart (that's a boy after my own heart).  You turned around looking panicked and opened your mouth to yell, but I stopped you.  "He's here!"

You came over looking frazzled and not really in the happy shopping spirit.  You opened your mouth to apologize to me.  But then you heard laughter and turned around to see your son tickling my daughter.  In her wheelchair.  Two children.  One with Cerebral Palsy and one with Down Syndrome. Your frown turned into a smile as you recognized another invisible solider.  We chatted and laughed about our kids and you took your son home.  I unloaded all the chocolate and checked out.  Your son brought a smile to my face the rest of the day.

You see, not all soldiers are stationed far away.  There are many you see every day.  We don't fight with gun and grenades.  We are your neighbor or even a member of your family.  We keep in the shadows so we can fight for the most important thing in our lives.  Our children.

We fight our own enemies.  We fight insurance, doctors, therapists, and supply companies.  We fight so our children have access to all they need to help them grow and thrive.  Somedays we even fight the world so they can see how wonderful and amazing we know our children are.

We stand with our troops.  When one of them takes a hit we gather around them.  We offer encouragement, resources, and most of all we pour our hearts and strength  into them so they can stand once again.  We are there for each other.

Here's to you my troops and my friends.  You have helped me make it through many battles this year and without you I may have been taken prisoner by the enemy of despair.  We have fought long and hard together and I am proud to stand and serve by you all.  May your days be full of hope and victories and your losses be few.  Know that I am there ready and willing and able to battle with you.

Happy ThanksLiving!

When I was younger I had my life mapped out.  Especially my Norman Rockwell holidays.

I would be sitting at the table beaming with pride over my five children in matching holiday attire. They would be sitting (two boys three girls) down with my husband in his tie looking on in anticipation over the golden turkey, stuffing, potatoes, and other holiday appropriate festive items.

Last week reality collided once again as I sat in a gi office with my son and listened to childhood IBS.  Gluten, lactose, and fructose intolerance.  Yippee. Seems like his bio fam has a lot of gi issues.

It also hit hard the week before when an independent feeding therapist re-evaluated my daughter and brought up concerns on her oral eating.  They told me I needed to primarily use her g-tube for now and offer her oral feeds but keep a close eye on it.  Aspiration is scary business.

Both kids also seem to have a knack for saying "Hey, it's the holidays, let's contract the plague!!!"  So I've had two sick kiddos on my hands.  It's enough to drive anyone bats.  Or make you want to run screaming for a one way ticket to someplace more peaceful.  Like say, Beirut.

And a couple of years ago it probably would have bugged me more.  Lots more.  I really wanted things to be so much different.  But the reality is that unless you are a TV show, sappy holiday movie, or a very good book things very rarely wrap up neatly with a bow.

When we were growing up we often went to my grandparents for the holidays.  My sister and I sat in the back seat and tried to kill each other while mom and dad weren't looking.  We also probably drove them crazy.  Then we stayed in hotels and I had to share a bed with my sister which also resulted in us trying to kill each other.  I can't imagine my mom thinking that this was just how she wanted to spend time making memories.

But despite it all I'm so thankful.  My life will never be Norman Rockwell and frankly I'm not sure that I want it that way.  My life is a whirlwind of doctors, therapists, learning to make special dietary items, tube and med bolusus.

My life is also filled with joy.  For years I wanted children.  I begged for them, I miscarried them. Holidays just hurt so much.  My two children came from broken places and made my heart whole again.  They filled empty spots in my life and made me a mama!

For two abandoned and abused children they have no visions of what holidays should be like.  Right now Marvin is happily playing with cars while sipping ginger ale and my poor little girl is knocked out cold sleeping in her dah's arms after a night of pain and crying.  For them life is pretty good right now.  They are safe, loved, and despite having the plague, pretty darn content!

I've learned to be thankful because no matter what life throws at me, I've learned to adapt.  I borrowed my post title from a sermon series.  But for me it's more than a series.  It's a way of life that I am making a choice to live.  I'm not perfect and I don't pretend to be.  I'd rather be real.  But I'm proud of what our family is and what we have fought against.  Of the inch stones we have celebrated. Of victories won, lost, and called a draw.

We still have a long way to go.  But no matter what my family is living proof that sometimes all you need is each other (and a good gluten free sugar cookie recipe, I can honestly say that this last batch isn't that swell) and lots of love.  So hold on tight to that.

Thank you too for following our journey.  You guys have been an amazing support to us as well.  I hope that you and your family find your own ThnksLiving.  

Broken and Beautiful

"A broken soul is not the absence of beauty, but a cracked and torn soul reeks of the sweet incense it contains.” 
― C. JoyBell C.

I love that quote.  It's almost like you have to be broken to see what you are made of.  

This last week I watched my son be broken again.  I didn't plan on it happening.  It wasn't on my calender of events or to do list, but it happened.  

It started out with a visit for some services.  I try not to discuss my children's needs in front of them. Especially Marvin.  Not because I go out of my way to hide them, but when you have anxiety issues you have to be careful on how they are revealed and unfolded before them.  So I made a list with all of his current diagnoses.  The list grows and grows.  Sigh.  

So we went in and sat down, I gave my nice polite speech about how I don't talk about all these things and handed the woman the list.  Marvin plays happily.  But soon the play stops.  The woman reads the list aloud.  She insists that we do it this way.  Did you ever watch a piece of your child die in front of you?  We made it through the appointment and into the car.  My normally happy bubbly son was quiet.  He looked out the window and the tears streamed down his face.  

"Son?  Are you OK?  Do you want to talk to mama about it?"  

"Why, mama, why me?  Why did God put me together this way?"

I managed to hold it together until we got home and then I cried for the rest of the afternoon.  

The next day as we sit in another office the topic turns to Marvin's biological family and the abuse he went through.  He is still trying to process this.  He still thinks that he somehow deserves the abuse that happened to him.  Once again my child is broken.  

What Marvin doesn't see yet is that he is amazing.  He idolizes Shannon and me but I idolize him.  He is my hero.  He is proof that you can live through all of the crap that he did and get a million different labels and and still be amazing.  That you can be beautiful in your brokenness.  

I hope some day that he understands that even though he was "put together this way" not by a divine hand by by broken people that he will know just how wonderful and strong he is.  But until that day comes I'll be there.  I'll be there to meet him where he is, comfort his aching heart, and help him make beauty from brokenness.  

National Adoption Month

I bet you can guess what subject is near and dear to my heart and my life:).

I know every month has 8 million awareness causes.  November is also national novel writing month (because I know you are dying to know that).  But I am not planning on writing a novel (yet) so let me get back on topic.

If you follow my blog you know I'm adopted.  When I was dating my husband I made a point of telling him I wanted to adopt.  His response, "no problem".  But he wanted to try having our own kids first.

Well the years passed.  So did the miscarriages.  I watched other people around me get pregnant and have families.  It was hard.  So I broached the subject of adoption again.  This time I got the green light.

So I did the research.  I was all ready to hop a plane and fly to a foreign country to get a baby.  But then I looked at the cost.  It was staggering.  My every practical husband suggested that we "adopt local".  So we did.

It wasn't easy.  It took three long years and lots of broken hearts.  Long nights and days of crying. But then Marvin came home to us.

He was 18 months old and had special needs.  But looking at him made those three years worth it.  So very worth it.

So the years passed.  We still felt that our family wasn't complete.  So we went through another couple of years of paper slogging.  And then Cary Lynn came home.

It hasn't been easy.  Choosing to adopt can be a challenge in itself.  Taking a leap of giant faith and adopting two children with massive special needs has added to the challenge.

But it has been an amazing journey.  The bumps in the road have made me a stronger person.  These two little people took my world and turned it upside down.  They are my all and my everything.  My heroes.  They have made me the person I am today.  

But right now there is a growing need.  There are over 397,000 children in the US who are living without permanent families.  Out of those 101,666 are legally free for adoption.  But nearly 32% of these children will wait 3 or more years for a mama to bake cookies with them and a daddy who will tuck them in at night.  Every child needs a place to belong.  There is NO such thing as unadoptable.

Children are our hope and future.  Children who age out of the system are more likely to NOT finish school, end up in jail, and even worse repeat the same cycles that they lived through.  That is not OK. They deserve more. Adoption is a powerful way to bring permanence to a child's life and to let them know that they do matter.  

So this month whether you choose to celebrate national novel writing month, tree awareness week, world vegan day, or national maintenance week keep in mind that there are so many waiting children who want nothing more than to celebrate these special times with family.

It's not an easy road to take, but it is one of the most incredible journeys and rewarding experiences that you will ever have.  Trust me on this one.

Cary Lynn is Three!

Wow!

Just yesterday a nine month old with a cardboard box came to my house.  She came with clothes that didn't fit, and broken toys.  I stood holding her and basking in the thrill of my new little one.

She tipped my world upside down.  She has defied odds, cheated death, and has blossomed in our Topsy turvy household.

Cary Lynn has shown me how to be brave and because of her I have become a stronger mother and advocate.  I had to give up so much but have gotten infinitely more back.

Happy Birthday my little warrior!  Mama loves you more than you ever will know.

I'm still here!

It's been a busy time and we're moving into an even busier season!  I'll try to provide a quick update and do a better longer post soon!

We've all been busy.  But I had to take a break from the busyness to take care of myself.  I have been sick.  For about three years.  I finally got worn down enough to visit the doctor.  The good news according to them is that I don't have parasites.  Yay, I think.  The bad news is I have IBS.  The doctor wasn't overly helpful so I went to a dietitian and viola!  A few simple diet changes and this mama is ready to roll once again!  I'll always have IBS, I just need to manage it more than it manages me!

Marvin continues to rock out his new school!  I only wish I would have put him in private a long time ago.

 Ever the cheese ball, he is happy again.  And I'm so glad to see that smile:).

Cary Lynn was baptized a few weeks ago.

Here we are pre-dunk:).  Marvin tried to explain what was going to happen but she just made spit bubbles, lol.  

Here is one after the baptism.  We clean up pretty nice around here;)

I also decided to have a little party for her.  So there was an awesome cake done by our local cake lady!  If anyone wants to have her do one I promise you won't be disappointed and I will pass on her info to you!  

Cary Lynn loved the cake and spent time happily smashing it and eating frosting!  Not bad for a kid who isn't a great oral eater!!

Yummy!   Then there was lots of snuggles with grandpa and grandma who came to visit.  

Gee, she didn't get spoiled at all did she:)?  

So that is where we are now.  Hopefully I can sit down for a bit and get a longer post out.  I have a lot to say but it has been a zoo around here!  I just wanted to shout out that we haven't dropped off the face of the earth yet:)!  

Uniquely Marvin

Now that our AC has been restored and normalcy has returned to the land I've turned my attention to reading.  And more reading.  A 14 page report has come home and once again tipped my world in a new direction.

A few posts back I talked about how hard it was to not have any sort of diagnosis for my son.  How I felt like I walked in the dark.  14 pages changed all that.  A switch has been flipped on and there's no going back.  We received our neuropsych report and educational testing.  We learned so much from it.
The first thing we learned is sort of what I refer to as the "duh" diagnosis.  You know the one you know your kid has and it's so painfully obvious that even the most dense person sees it.  I'm talking about ADHD.

If you know my son you know that he has the attention span of a fruit fly at school and in many other diverse situations (my apologies if I offended fruit fly fans).  I first worried about it in preschool.  It was so obvious to me.  His inability to focus on group time, busy areas, etc.  When I brought it up time and time again the concern was brushed aside by teachers.  I was told "he doesn't have it, see look at that kid, they obviously have it Marvin is fine.".  I hate being told my son was fine when he obviously wasn't.  In fact I have come to hate the words fine and Marvin in the same sentence.  When I talked with the Drs and told them that he was "fine" and his teachers didn't think he had it they were a little burned about it.  While I agree that ADHD is way over diagnosed I also know that Marvin's brain suffered from drugs in utero and severe trauma.  He DOES HAVE ADHD.  In fact it is a significant amount of it.  Significant enough that he will require medication.

Marvin has also been diagnosed with dysgraphia.  Dysgraphia is a specific learning disability that affects how easily children acquire written language and how well they use written language to express their thoughts. Dysgraphia is a Greek word. The base word graph refers both to the hand’s function in writing and to the letters formed by the hand. The prefix dys indicates that there is impairment. Graph refers to producing letter forms by hand. The suffix ia refers to having a condition. Thus, dysgraphia is the condition of impaired letter writing by hand, that is, disabled handwriting and sometimes spelling. Impaired handwriting can interfere with learning to spell words in writing. 

This gets more fun now.  Due to Shaken Baby Syndrome and abuses committed by bio mom he has right brain hemisphere dysfunction.  Can you say that five times fast?  This has given my son problems with visual spatial processing which may cause future math issues.  He also has significant difficulty with visual learning skills.  The impact of his abuse lives on and on.  Sigh.  

Plus we still have PTSD and attachment issues.  Can't forget to bring those to the party.  

But in all new and a little scary stuff we had other news on his educational testing.  Marvin has a really high IQ, cognitive flexibility, and his executive functioning was very high as well.  It seems that he was very high in most of the testings. So he is a smart little cookie.  

Children like Marvin are sometimes referred to as twice exceptional children.  Children who are off the charts in both directions.  But to me he is uniquely Marvin. 

Goofy, fun loving, and caring.  A child who one day runs around with shorts on his head proclaiming he is invisible and the next day comes to me and says, "Mama it doesn't make sense.  Pouring water on your head and posting it doesn't cure anything.  It just makes you look dumb.  Mamas and Dadas should tell their kids to study hard, go to school and be good doctors and scientists so they can help cure people who are sick."  He is one of a kind.  And we are blessed to have him in our lives.  

Bumpy Ride

It's been a rough few weeks.

It started out with my Dr. visit.  The good news is I don't have parasites.  The office was very excited about this. The bad news is that I have IBS.  I told the Dr. I would rather have parasites.  They were rather disappointed in my response.  I know there will be some changes in my diet and lifestyle.  I'm not looking forward to giving up some of the foods I love and eating tree bark (O.K. I'm pretty sure I won't have to eat tree bark but you never know).

Then there is the house.  We had to replace our 14 year old carpets.  We got laminate flooring.  By now we are pretty sure that Cary Lynn will be wheelchair bound most of the time.  And her equipment has wheels. The person who installed our flooring was clueless and thanks to him we have big gapes in the laminate in places.  They refused to return our calls and the person harassed me on the phone for money.  We got a second person in to fix what he could but the gaps are still there.  Gaps wheels could get caught in.

Then our heat pump died.  When you live in VA it is hot in the summer.  You sort of require AC in the summer and heat in the winter.  When you have a child with special needs who can't regulate her core temp without lots of environmental modifications and has DI you have for some real good times.  Plus I have been rather unsuccessful at my attempts to grow money trees.

Don't get me wrong.  I'm not out on the front lawn crying over Tara burning down and swearing that we will never go hungry again.  But I do worry.  A lot.  That's a parents job.  Things may just be a little tighter and we may be eating a lot of boxed mac and cheese (I hope it tastes good with tree bark).

Even in this mess things that I'm thankful for.  Thanks to my awesome hubby and Rent a Center we have a portable AC unit.  We named him Edward.  Edward has helped keep my child's temp regulated and her DI in check.  Edward has helped keep my child out of the hospital.  I could kiss him.  Well, maybe that's taking it a bit far.

I also got my son's neuro psyc testing results back.  Although we have a lot to work on (and that's a whole other post) the tests show that my kid, despite everything, is a pretty smart little guy.  But hey, I always knew that. (Also a parent's job.)

So for now I'm going to keep trying to grow a money tree, learn to embrace tree bark, and buckle up because you never really know what life is going to throw our way, but I'm going to give it my all!

Feeding School Dropout

When you begin to slog through special needs parenting you often feel as if you need to do and go to as many theraputic opportunities presented to you.  After all, a "good parent" wants to do what is in the best interest of their child.  Just as much as you put little Janie in ballet and little Jeremey in karate to keep them well rounded.

When we brought Cary Lynn home she did't come with a manul, but she came with a lot of therapists:).  She had Physical, Occupational, and Vision therapy.  But there was one area that was lacking and that was feeding.

Cary Lynn drank from special bottles and had a tube in her nose (an ng tube) to help her eat.  She had weak oral skills and was super tiny from being undernourished.  It was strongly suggested that I start feeding therapy with her to help her eat.  Being a new momma to this somewhat overwheliming bundle, I said sure, I'll sign her up!

But it wasn't that easy.  There was a wait list.  A long one.  So I brought her in faithfully to afternoon weigh ins and nutrition counseling.  What finally got me a slot was the NP seeing me put food in her bottle and Cary Lynn eating it.  I honestly think it horrified her, but I told her she wasn't able to spoon feed.  I got an immediate slot and started feeding therapy that week.

In the beginning it seemed to work.  Cary Lynn was weaned off the baby bottle.  Unfortunately, they put her on this:

I affectionately call it a hamster bottle.  The feeding clinic staff was not amused with this.  But seriously, does this not look like something you put in Fluffy's cage??!  Anywho, it worked and she was off the bottle.  She also begin to grudgingly take some food from a spoon.  I was able to learn to puree table foods and add more variety and calories to her diet.

But the problem is that Cary Lynn has sensory disorders that make her very sensitive to lots of things, including food.  Her gag reflex is weak and add in the fact that she has CVI and can't always make out what she is being fed visually you have a recipe for disaster.  Plus a wonky GI track.

It seemed like we'd get one problem solved and another would pop up. Over and over. She would get sick and loose weight, get constipated and loose weigh, decide that the planets were misaligned and loose weight. I just started to hate meal times, gatherings that involved food, and I was frustrated with feeding therapy.  I mean weren't they supposed to fix this??  Things just kept getting in the way.  I just felt like I was failing my baby girl.  Over and over.

Cary Lynn got really sick last winter and as a result we introduced a new way of eating.  The feeding tube or g-tube.  It was and is a blessing and a curse all at once.  Observe exhibit A:

 What you see, a sleeping baby.  What I see, oh crap she is going to miss another flipping feed time because she is out like a light!!  My child sleeps like the dead.  In fact I am sure there is scientific evidence to support that it is easier to wake the dead somewhere.  Her doctors all say, "Well Mrs. Fields, you must keep her on a strict schedule and well stimulated to keep her waking and sleeping times separate."  Ha!!  First of all, I would love to have her on a "strict schedule" but I have to come see you during her nap time because that is the only time in the world you are available.  Second, have you met my child?  She is headstrong and stubborn, traits that I love more than anything, but when she is done she just knocks out.  Period.  It doesn't matter what I put in front of her.  She is toast and responding to her body's needs.

So some days she eats this way:

With these tools:

I put food or formula in the syringe and go to town.  The downside of this is that she looses a chance to eat orally, she learns that she can be fed and not have to put any effort into it, and feeding clinic is like, "well you have a back up so we don't have to try as hard with orals."

What it all boiled down to is we came in once a week, Cary Lynn bit therapists, refused to eat, and threw up on them.  Nice.  Over and over.  She also didn't respond to any motivation.  Like music, bubbles, toys.  So her therapist and I had a long overdue conversation.  It was hard and we both cried.  So for this season we are stepping back.  Cary Lynn has been trying to tell us in every way possible that she just isn't ready for this. Don't get me wrong, we will continue to eat at home and I also will be learning more about a blederized diet for times when she just isn't able to eat orally.

I don't feel bad about it or guilty.   What I DO feel bad about is that I kept doing this weekly just for the sake of doing it.  That in itself is wrong.  Cary Lynn can eat.  When she wants to:).  I mentioned stubborn right?  But for now we are going to slow things down and take it at her pace.  We're going to make eating fun and not a horrible task that must be completed daily.  She has enough of those.  This does not have to be one of them.  My child will eat, but she will do it when she is ready, and that's the way it should be.

Knowledge is Power

So imagine with me that you are deported to a new place.  Your past has been erased and you are merely told that you come from a healthy people and that everything is groovy.

Well that is all fine until you get sick and need a doctor.  If you happen to ever visit a doctor what is the one thing that they look for?  Yup, family history.  But you explain that you are from healthy people.  The doctor then looks at you like you are smoking crack and demands to know if you know anything at all.  He tells you that this is important.  That no matter what others have said this matters.

Wouldn't you be upset?  I mean what if cancer runs in your gene pool and you need testing or people to look for markers?  Would you be scared?  Angry?  Confused?

But for many people this is a daily way of life.  In the world of closed adoption doors are continually shut on our medical histories.  When I was adopted in 1974 all the agency told my parents is that I came from"healthy stock" (can you say moooo?) and that my biological family wanted me to be raised Lutheran.

Do not get me wrong, I don't object to closed adoption in general.  I think some things are not meant to be aired out in the world and privacy needs to be respected.  But I would like to take a second look at medical records being forever withheld.

For years I would go to doctors and not have anything to be able to tell them.  They would press and haggle me and all I could say was "sorry, I just don't know."  It got to be draining to the point where I would dread going and having to go over the same song and dance over and over again.

But I'm one of the lucky ones.  I now have my medical history.  The day that history came to me and I held it in my hands for the first time I cried.  Not because there were horrible things in it, but because I now had answers.  I felt really empowered.  When I went to my pcp last year with that history everyone was so excited!!  She looked at me and said, "Now Mrs. Fields, we know and knowing will help us to give you the best and right care."

It also was important yesterday.  I haven't been feeling too swift for awhile and going to a specialist and giving them my family history helped.  They knew what tests to perform right away and what they may be looking at.  Once again I felt empowered that I have this.

I have been very blessed with all of this.  Not only have I gotten a comprehensive health history I also have some pretty awesome and special new people in my life that I am daily grateful for.  I feel like a puzzle that has all of the pieces in the box.

But for every adopted child who has their records there are so many more who do not.  Who sit and wonder.  Once again I'm not saying that everything has to be aired out.  Some things are too painful and awful to disclose and may negatively impact the adoption.  But it may be helpful to include more health information.  Especially information that may save the adopted child's life.

I have health information on both of my children and it is a huge blessing.  The only things I really can't answer on their forms is the time they were born and if they were breast fed.  And frankly, in the grand scope of things that is peanuts.

I guess at the end of the day I know where I stand on this.  Every child has a right to their medical history. Thanks to times changing on how adoption is perceived more and more adoptions are semi open to fully open.  Laws are changing as well.  A group of my friends at Bastard Nation (catchy title, right) have been successfully lobbying (and some are outright suing) to have access to their records.  Although others may say what is the big deal, when it comes to my health and the fact that I want to be around to see my babies grow up (plus if I bump off Shannon will shame my daughter by not being able to come up with a matching outfit!  I can't even leave him alone for a few hours let alone indefinitely!).

At the end of the day my parents are the two people who took me in and raised me as their daughter.  But my genetic makeup comes from the family strong enough to let me go.  I dwell in two worlds and am a happy citizen in both.  I can only hope, pray and continue to advocate that the day will come that my fellow adoptees are able to have the restoration of their rights and knowledge of their heritage.

The Undiagnosed

Imagine you are walking into someone else's house for the first time.  It is night and as you walk inside your host tries to turn on a light in the very dark living room.  Ooops, the bulbs have burned out.  Your host apologizes and runs to get lights while encouraging you to have a seat.  As you are left alone in the dark you really want to just stand in one spot but sitting seems much better.  You stumble over a end table.  Your hands reach out on front of you to ward off evil furniture spirits and the sofa jumps out and connects with your shin.

Now imagine the same scene but the light is on.  You can see everything clearly.  You find the couch, sit down, and manage not to come home looking like you and the furniture got into a street brawl. When the lights are on you can see what is there and how to work with it.

I would use the above description a lot back in my teacher days.  Especially when a child with special needs came my way.  I would encourage parents to seek answers so I could be the best teacher I could be for them.  Some colleges would argue that in looking for answers a child could become nothing more than a label or a diagnosis.  I would argue back that this would give me the tools that I needed to empower the child and help them succeed.

But what if you are not the teacher?  What if you are the parent?  For Cary Lynn her diagnoses were always pretty black and white.  There haven't been many surprises with them.  I don't define her by her needs, but work with her daily to be her best little person.  The lights are on and I don't run into too much furniture.

With Marvin it is so different.  All I got was "love him and he will be honky dorey".  Yay!  Nobody told me what meth can do.  Nobody told me about Shaken Baby Syndrome.  Nobody told me that taking an 18 month old out of a secure environment can wreak havoc and leave scars that last a lifetime.  Nobody told me that even if you are a violently abused infant that you don't outgrow and forget these things.

Don't get me wrong.  I did the research.  I sat with his social worker, my notebook of statistics and facts.  She was impressed.  I really did my work.  Or so I thought.  When Marvin came to us the lights in my house went out.  I tripped over so much furniture and banged my shins over and over again.

What has made it super hard is that years later I am still in the dark.  I find myself frustrated at times.  People saying he has this, or wait no he doesn't!  As I was talking to his therapist the other week about it he pointed out that kids like Marvin slip through the cracks so often because they can present pretty normally to the outside world.  And he can.  He is also a master chameleon, blending into his environment.  He had to be.  When he was little his survival depended on it.

Plus I am part of a new generation.  Raising a child who was born meth addicted.  I talk with other meth moms a lot and together we find solace.  We see our kids and the things they struggle with.  As one mom put it, "I tried to kill the best part of myself and nearly did.  When I see her struggle part of me breaks every time."  We break for our kids.

It also becomes hard explaining to the world around me about his needs.  Everyone wants him to be "fine". Heck, I want him to be fine! I would love to live in a world without specialty doctors, therapies, and a home routine that is so heavily structured.  I become frustrated at times just wishing for him to "snap out of it".

But that isn't going to happen.  Marvin can't help the meth or the abuse he endured.  He is always going to have needs.  Needs that others may not always understand or see but they are there.  He may also always live in the shades of grey when it comes to diagnoses as well.  Or he will fall into broad categories like traumatic brain injury and ADHD.

Living in the dark is hard.  As we get ready for another intensive round of testing in the next two weeks I am hoping that I will get a flashlight or even a stinking candle so I can find my way in the dark.  I don't want Marvin to become a diagnosis but I want to help him find his way so he can be the best he can be.  I want to empower him and give him the tools to help him succeed.  Because above all else he is an amazing little boy who has beat so many odds already.  A miracle and one of the greatest blessings I have in my life.  Lights on or off I am a lucky momma and I don't ever forget that!

Cerebral Palsy days and nights

Back in the days when I was in the working world I had many different kinds of bosses.  I had fun ones, quiet ones, ones that liked to pretend that they were in charge but the assistant director really ran the show. All types.  

Sometimes it was hard.  It felt like even though I was competent and could do things I got micromanaged.  I had bosses who loved to rearrange my classroom.  Who told me how to do things.  Who left me feeling so micromanaged that I sometimes felt that they doubted I was a competent human being.  It was frustrating, upsetting, and most of all humiliating.  If there is one thing I hate it is to be micromanaged.  It kills me.

I would get angry, go home, vent to my poor husband, and get over it.  I can honestly say in retrospect I didn't handle things too well.  I probably brought some (all right a good bit) on myself.  I don't like confrontation and I want everyone to hold hands and sing.  Well all that can get you in the end is steamrolled. So I buried it all inside and pretended it didn't matter when it really did.

Cerebral Palsy is a lot like that.  Except it never goes away.  You can't go home at 5pm and leave it at the door.  You can't quit it.  You live it 24/7.

It micromanages you.  It tells you what to do, it strips you of your dignity, makes you appear incompetent, weak, and then if that is not enough fills you with pain.

Some days are better.  Some days you are able to laugh, play, and do so much.  You feel good.  Some days you hurt, can't get out of bed, and just want the world to go away.  These days are hard.
Cary Lynn's micro manager doesn't care if she wants to do things or go someplace.  It doesn't care if she wants to sleep or play.  It even takes away her voice.

But Cary Lynn is a fighter.  She basically tells her CP that it can take a long walk off a short cliff.  She doesn't take crap from it.  Sure, it isn't always a bowl of cherries but she has learned that she is stronger than CP.

Even on days when we are sick, hurting, and just don't feel good she can always turn the charm and smiles on.  She shows me that you can always be stronger than circumstances around you.  That you can be happy even when things aren't going the way you want them to.  That you can still have dignity even when your body tries to betray you.

I love to teach my children.  But in the end they always end up teaching me more than I even will teach them. I am a stronger better person because of them.  One who now no longer is silent when things aren't working. I still have to finesse how I go about responding to situations, but I would rather be real than smothered. Cary Lynn is a warrior and I am proud to be a mama to a little girl who shows the world that you can be fierce despite CP.

A new view of Freedom

Today I am turning over my blog to Kathy.  Kathy is Cary Lynn's only link left in Early Intervention.  A year ago she wrote this piece on my daughter.  The other day when I was cleaning out some files I came across this and I remember how touched I was that someone wrote this about my little girl.  I think I am going to frame this so I can remember what an awesome little person I have in my home and what an awesome person I have on Cary Lynn's team:)

A New View of Freedom

By Kathy Guisewite ~July, 2013 ~

This is Cary.  I have the honor of visiting with her each week. As an Early Intervention Professional, I’m supposed to offer her family encouragement and wisdom and playful suggestions as to how we can all best support Cary’s development.  And I do this with great cheer and devotion!!  But what actually happens each week is that Cary offers me encouragement and wisdom and playful suggestions as to how I can live fully and freely in this life.

Cary tells me with every visit that the best way to defeat the tyrants in the world is by way of laughter and noisy raspberries.

She reminds me that music is always the best medicine when you are sad or grumpy.

She also reminds me that music is always the added joy on happy, carefree days.

Cary says that when the battles are tough, it’s time to put on the attitude of “just try and stop me” and press forward no matter how many times you get knocked down.

Cary says if you really want to make a difference in the world then be who you are as best you can.

Cary says the best way to evoke change for good is to be happy and help others to find their own happiness.

When I think of freedom and what that means to Cary, I think it means being loved.  She doesn’t seem to whine about what she doesn’t have.  She doesn’t notice the differences in her world and mine… she just embraces what is and loves the gifts given.

Freedom means so much to so many, and we are all grateful to live in a nation where we are free to pray and love and explore and grow as we feel individually led.  But Cary teaches me that freedom is also a way of thinking and living no matter what life tosses at you.  Cary helps me understand that freedom is a gift of the heart and the spirit… bound only by the walls our small minds erect.

As Cary finds and loves her own freedoms, I realize that even in times of dismay… in my own home or in the wider world… we can each add to the hopes of freedom by living like Cary.  Don’t take no for an answer.  Don’t live smaller than your spirit.  Remember that your joy is a source of goodness in the world.  And when all else fails, seek the light, the beautiful light that fills us with hope for each new day.

I love you, Cary.  Thanks for helping me to remember to live free.

More changes

It seems like we just when we settle into a routine the cosmos decides to shake things up to see if we are alert and on our toes.

Since all I do is sit at home, watch soaps, and sip pina colodas (not) all day.  Haha.  First of all I have never had a pina coloda and second of all I hate soap operas.  I prefer reality tv thank you very much.  Throw in a salted caramel brownie and my life is complete.

The children both have big changes.  One of our biggest changes is Cary Lynn's professional health care team.  VCU has been really awful lately.  We still have some good departments and people but frankly telling me that my kid is going to die and there is just no point in doing much with her does not really thrill me.  Yes, it has been said.  Yes, I do know that she does have a shorter life span.  However, I don't need it to be pointed out repeatedly and beat into me.

Plus we are also loosing our neurosurgeon.  That is not a big loss in my book.  Many people liked him but I was never overly impressed.  Anyone who does not care to spend more than 5 mins and 42 second with you (yes I did time his last visit with us) does not deserve my respect or admiration.  I really believe that we are partners together and I don't appreciate being shoved off on the nurse practitioner.

So we are moving some of Cary Lynn's care to UVA.  I met with her developmental pediatrician last week and not only did she hear what I was saying she heard what I didn't and couldn't say.  She took time to match us to good people that fit what we were looking for in Cary Lynn's care.  I also had the privilege of "firing" her old team.  It was kind of liberating.  OK, it was downright great I won't lie.

We also are bucking the system on education.  Cary Lynn ages out of Early Intervention in October.  For some reason everyone starts jumping the gun to send them to school.  Like if you don't send your special needs child to school you are a horrible parent.  There is a lot of pressure.  But Cary Lynn just isn't ready. Period.  The powers that be are super surprised that I am refusing school for her.  That I am just not so excited about that.

There are a few reasons why we're not ready.  Cary Lynn has CVI.  She is still in beginning phases.  A child with CVI needs huge amounts of modifications to be successful in the classroom.  Modifications I'm sure that our county won't be able to accommodate.  Plus she is medically fragile.  She requires lots of extra care and still has lots of doctors to go see on a weekly basis.  And we get great services from our outbound therapists.  And her level of development is more like an infant than a nearly three year old.  She just isn't ready yet.  In a few years she will be ready for home bound services but that is a long way off yet.  She needs time to get there.  Time is a precious commodity in our home and I am OK letting her have a chance to grow and blossom.

Marvin too has changes.  We took him to a developmental clinic and are now visiting with a neuropsycologist.  He is great.  We have ruled out what Marvin doesn't have but still have a long list of things that are going on with him.

He struggled so much this last year.  His first year of school was great but this year just wasn't.  Even with an IEP things just weren't good for us.  For him.  Sometimes you have to make really tough choices when you want your kids to learn.  You have to honor the way they learn and what their needs are.  Marvin has had to have tutoring to catch up this summer.  The things that he supposedly passed on are what he is struggling with now.  But the good news is that we are making progress.  The bad news is I feel that he should already know these things.

So after consulting with Marvin's team the solution we came up with was to try out a smaller environment for him.  He also needs his unique learning needs addressed and we have hopefully found a school that will help us do that.  It was a hard choice for our family.  But sometimes you have to do what works for your situation.  We are very excited about this and hope that we have found a good spot for our son.

I really wish that I could say that I embrace change and some sort of Miss America crapola about it.  But honestly, I hate changes.  I have eaten the same thing for breakfast for years, wake up and go to bed at the same time, and love my routines.  If you throw off my groove my world comes to a screeching halt.  Really. I can be quite the spazz in that department.  But life is about change.  It isn't about making you happy or comfortable.  And when you have kids special needs or otherwise you don't always get your cozy happy routines.

But I am ready for these changes, because honestly, the routine wasn't working.  It was becoming toxic to our family situation and way of life.  And so we made the changes to bring healing and hope to our family. Because at the end of the day I have to honor my children's needs and work to make things better for them. And eat that brownie that is calling my name.  

Happy Father's Day

Two men have had profound impacts on my life.  The first is the one who adopted me and called me his little girl.

There I am in all my radiant baldness.  And dad is there too:).  When I tell people that I am adopted many will ask if I would ever find my "real" family.  As if the family I had was somehow supernatural.  Let me tell you, dad could not walk through walls and float in the air.  Now mom could hear through closed doors, but that is something different.

For me this is my real family.  The people who raised me.  My dad taught me how to do lots of things and could always make me laugh.

Most of all he loved me.  That's what counts in the end.  

The second man is my husband:).  

I remember our third (or fourth) date.  I told him I wanted to adopt.  He didn't even flinch.  Sure he said.  I knew he was a keeper.  

When we started the adoption journey we didn't set out to take on special needs kids.  We thought we would just get some nice older kids and live happily ever after.  Ahem.  No laughing please.  What we did get were two children that have more needs than you can shake a stick at.  

Through it all it has been a wild ride.  A lot of men would have walked out and left a long time ago.  Mine didn't.  He has been an amazing father to these two kids.  We don't always see eye to eye on parenting styles, but here is a daddy who loves these children that were considered throw aways by society.  He sees something in them daily that they don't always see in themselves.  He helps bring out the best in them.  

Happy Father's Day to the two most important men in my lives.  I love you both!  

The Village People

No this post is not about the group nor am I going to burst forth into a really bad YMCA routine.

What it is about is my village.  And the people who make it work.  Monthly, weekly, daily, and sometimes minute by minute.

When you have a child with special needs it truly takes a village to rally round and hold down the fort.  When you have two children with special needs your village gets really really big.  I'm thinking of applying for my own state.

Even though the roads to my village are rarely paved and down right pothole-ish at times I have had people come and make it their home.  They are the unsung and unappreciated heroes who often get the thankless jobs and have to deal with me.  I'm not the easiest person at times.  I have little patience for the ridiculous, will ask endless questions to get the answers I seek, and will call and badger a person to death to get what my children need.  I also have a bit of a temper when having to deal with a person I know is capable of more and they refuse to give it their all.  Fun times, eh.

But despite that these people have stuck by me through it all.  When I started this journey I had broad assumptions of who would be there and who wouldn't.  Well let's just say I have been surprised time and time again.  I know that the road is rocky but most of the people who I thought would stick by me dropped our family and ran.  But I also met and made friends with some incredible people along the way.

So this post may start sounding a little Miss America-ish and if you want to stop reading right here and go watch TV that's OK.  You just won't be on my list.  Haha.  Just kidding.  Maybe.  Anyway here is a shout out to my village.

My family.  Seriously, if I don't place them at no. 1 I may be disowned.  But really they have been there for me.  My family has grown and changed in amazing ways this past year.  I have discovered a whole new branch on my family tree.  Very cool stuff!  But mom and the hubs are still number one!  Mom has been so awesome and checks in on me on a regular basis.  The kids adore her.

Shannon is a great guy.  He also adores his kids.  We may disagree on little things, like I prefer the toilet paper on the toilet paper spindle and he prefers to have me play where is the toilet paper today in the bathroom, but I can always count on him. 

I also couldn't have made it through the last year without Cary Lynn's nurse.  One of her favorite phrases is "It's all good."  She has kept me sane and made sure that Cary Lynn remains in one piece.  She is a nurse so she knows a lot about the medical side of it all and keeps it pretty real.  She is also as hard as heck to get a picture of so if she reads this she will be relieved to know that I couldn't find a current one.  I am going to have to start stalking her with a camera next week.  

My children's therapy team.  We have a really great team.  Most of my children's therapies happen at Brooke Road.  The therapists have their work cut out for them as my children can be uncooperative about 90 percent of the time (their asleep the other 10 percent).  But through it all they have pushed my kids and gotten amazing results.  I also handpicked Cary Lynn's vision therapist and we just love love love her!  She is the only early intervention person I have left and despite my strong dislike of how EI  is run where we are she is one of the reasons I have hope for the program.  

Children's Home Society and Noah's Children.  Two organizations that have had a big impact on our family. CHS facilitated the adoption of Cary Lynn but have really helped me advocate and get services for Marvin. They check in on me on a regular basis, help me wade through endless paperwork to get services, provided us with a family counselor to help Marvin with trauma issues, and introduced me to a rocking mama who adopted two children from them!  She has grown into an amazing friend and we are wading through the adoption journey together.  

Noah's has also been really helpful in connecting us to a community of people who are going through many of the same struggles of having medically complex children.  They visit, call, and have provided our children with music therapy.  They are also starting a pet therapy program and we are super excited to have visiting dogs.  The events they do for families are amazing and they are sending my son to camp this summer so he can just do something normal.  Something that other kids his age get to do.  When you live my life normal isn't a daily occurrence.  So letting him have time to breathe and be a little boy is a huge thing for us.  

Buddy Break and members of Trinity.  The special needs program is amazing but what blows my mind is that even though we don't attend there right now is that they still check in on me, involve our family, and just love on us.  We have a good church right now.  And lots of love from some of the folks at CVAG.  It is good to know our family is loved and cared about.  Plus many of the families at my last job who have brought me countless hospital meals and spared me from another night of Subway.  

They are last on the list but certainly not least.  My mom support group.  I was so lucky to find them.  They have been in the trenches and can change a g-tube blindfolded on burning coals.  They answer questions, calm fears, and most of all support each other.  I have seen lots of other groups henpeck and get ugly.  I have yet to see this group do that.  They support each other, kind words and encouragement are given freely.  When I have a bad day they offer support.  When I have a good day they celebrate with me. Because of them I have reached out towards others and come alongside of them on their journeys.  They help bring out the best in me.  

These people aren't everyone in my village but they are the heart of my village.  As I add people to it and become part of other villages my life and my children's lives become better for it.  So thank you for all that you guys do.  You have made a difference in our lives!  

Marvin's Seven

This post is a little late, story of my life lately but with battling pink eye, a stomach bug, and and child developmental testing Marvin has had an extremely busy and active month.  Some of it not so much fun for him.

Where did my pudgy 18 month old go.  Marvin's first birthday with us was when he was two.

Feel free to ooh and ahh while I get a bit teary here.  See that smile?  When he first smiled at me when we got him I was like, yup I'm done.  That kid could ask me to jump off a cliff and I would happily do it.

Now here we are at seven.

Still a crazy happy kid and that smile!  He's a little tired in the pic from his afternoon of water sliding but he still had more energy than the rest of us!

What amazes me time and time again is that after he has lived through so much he still has the ability to be so happy and free.  His past will always be a part of who he is.  The abuse and neglect that he lived through. The fact that the meth his bio mom took has chemically altered his brain in ways that science is just beginning to understand as we raise our generation of meth babies to adulthood.

Some days and some things aren't easy for him and not everyone understands that or gets it.  I would love for Marvin to be "fine" and "well" but that has been like chasing an illusive butterfly at times.  Every day is different and every hour is different.  So we have learned to slow down and take it a little bit at a time.

Marvin has come a long way in his life and journey.  He tries hard, works harder, and is a pretty happy little person wanting to grow up way before his mama is ready.  He is already wanting to be eight while I'm still trying to wrap my mind around him being seven.  Marvin wants time to speed up while I just want to grab it by the tail and slow it way down.  

This coming year will have new challenges and be a new season of life for him.  Time won't slow down so I'm just going to have to get used to my little one growing and embrace this new season.  

Happy Birthday Marvin.  You were the first person to show me what unconditional love and joy were.  You taught me that even if the past is hard the future is worth fighting for.  That sometimes it is better to let things go and live for now.  That eating ice cream for breakfast won't kill you (although your teacher may not appreciate it).  For being my firstborn, making our family tree more diverse and unique just because of you being you.  For being the first one in your bio family to come out of a cycle of drugs, poverty, neglect, and abuse and to grow strong and healthy.  I love you.

Ups and downs

Sometimes I can't help feeling a little blue about things.  It just happens.  I'm human after all.  

Today I was in Cary Lynn's room organizing her multiple medical supplies.  I was counting feeding bags, trying to figure out what I did with some wraps to help with skin growth around her g-site, cleaning up her feeding pole and thinking that if her medical scissors wandered off one more time I was gonna have a bird.  

It hit me.  When did this become my normal?  When did I get so used to these things?  When did the novel become commonplace?  Most parents are busy picking up dolls and blocks.  I place medical bags that feed my daughter through a hole in her stomach in a pretty bin.  

It hit me hard.  Like a punch in the gut.  I had to sit down for a little while and take it in.  Have a little cry.  

It just isn't fair.  It isn't fair what happened to my child.  She should be going to ballet classes, telling me NO in a loud little voice, shoving crayons up her nose, and doing all the stuff that used to drive me crazy with Marvin.  Funny how much I would kill to see that behavior now.  How much I took it for granted. 

But life is rarely "fair".  If it was I would be 5'8", blond, and a size two on a "bad day".  But that's not the way it works.  I'm 5'2", a brunette (alright, I went gray in my 20s and have been coloring it, but I did used to be a brunette, I swear!!),  and have a love affair with baked goods so the only 2 in my house is my daughter. I may have to have a talk with the gene fairy about this when I'm done with this post!  

Even though there are intense moments like today there is so much that I find to be grateful for.  Thanks to that awful hole in her stomach Cary Lynn has gone from 19 pounds and failure to thrive to 23 pounds and making it on the growth chart.  Her legs are getting stronger and have more range of motion.  She continues to do a bit more every day.  

I can't have fair so I will take what I can have.  A very happy little girl who continues to surprise and amaze me.  And come to think of it, I don't really miss having things shoved up noses.  Not one bit at all:).  

Tough Choices

When I was heading to an appointment with Cary Lynn the other day I was stopped by a hello baby girl aren't you getting so big?  I had to take a second look cause I was pretty sure it wasn't me they were talking about (and if it was they might be getting yelled at).

It was actually Cary's biological brother and his adoptive mom.  Cary Lynn has two bio brothers.  Both are older.  Both are adopted to separate families.  The bio parents have no rights on any of them.

After a hello we made small talk.  For me it is awkward.  There is no Peggy Post on how to handle this. Cary's bio brothers are adorable.  The oldest has multiple special needs as well.  He looked happy in his walker and spent time trying to bop Cary Lynn on the legs while I was talking.

I enjoy talking with both families.  I like seeing them proudly show off their children.  The children are flourishing and growing with their families.  But we adults have had to make some tough choices.

The toughest one has been what do we do with sibling relationships?  For Marvin it was cut and dried. The bio family is out of the picture and due to the severe abuse it is for the best.  But Cary Lynn's siblings are in good places.  They are loved and cared for.  When we see each other at appointments they seem so glad to see her.  They talk about how well she is growing and how much she can do.  We chat and talk about what our kids are up to.  We share how much they look alike.  How they are joyful happy kids.

It is a dance.  We are careful not to step on toes and I am careful not to share too much.  I see them looking at her and the wheels turning.  There are unspoken words that hang around as we are careful not to overstep boundaries that we lay down.

For me I am torn.  Being adopted I know what it is like to have all sorts of questions that have no answers. To wonder, to question.  To think about things.  I don't want Cary Lynn to feel resentful that I have taken something away from her.  I know the other families feel that as well.  We have often voiced it.  I feel guilty after these meetings often.  Did I give her enough time?  Was I supportive of her feelings?  Did her bio brother have to hit her that hard?

We watch.  But so far the children are all little.  They don't understand that the person who is right next to them is a blood relative.  So for now we have decided not to force relationships. Someday Cary Lynn will be older and if she wants to form new relationships with her bio brothers we will support her.  She will be ready for it then.  I speak from experience on this one.  It is better to wait for now.  Until she is old enough and ready for the truth.

 Cary Lynn's world is our family.  Her brother's aren't the ones out there.  Marvin is the one she calls "brub".  I'm Mama and Shannon is Dah.  We have become a strong unit and an amazing and dynamic family. And I am blessed to have them all in my life:).  

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Paying it forward

We have been really busy around here.  I love to blog and keep people in the loop, but the last few weeks I am lucky if I have time to tie my own shoes let alone post.  With two kids running to appointments. therapies, and our inbound services it really can get crazy.

The last couple of posts were kind of downers.  But life tends to go a hurricane 5 category speed for me so I just don't have time to weep into my lace handkerchiefs and lay on the sofa and moan (really, plus we are getting our house painted so I can't even find the sofa!)

But I have been up to something.  Well several somethings.  I tend to go full throttle:).

When we visited Dr. Roman a few months ago Cary Lynn got to experience a LightAide for the first time.  She loved it!  I really wanted to get her one, but the price just threw me.  Special needs stuff doesn't come cheap.  Then I got to thinking about the other visually impaired children in our area.  How LightAide could help them as well.  I also wanted to find a way to thank two very special places near and dear to our heart.  The Virginia School for the Deaf and Blind (VSDB) and Children's Hospital of Brooke Road.  Both places have gone above and beyond the call of duty for our little girl.  When we were handed our little bundle of pink joy she came with (and now has even more) labels than a pickle bottle.  It was like being told to drive to Wisconsin with no map or gps.  I had a general idea of how to get there, but with no map there was no way I could do it.

VSDB and Children's became my map for my daughter.  Sometimes I still take shortcuts and senic detours, but for the most part my map has been pretty darn good.  So I set out with the lofty goal of not one, but three LightAides.  Thanks to fundraising and some really generous people and a very generous discount from LightAide I was able to get three LightAides, a carrying case, and switch for everyone.  VSDB has theirs, Brooke Road gets theirs Monday if all goes well, and we have had the chance to use ours and share with several families in the area!

Sorry, I do have pictures other than the boxed one, but my camera has gone awol with the painting!  I will post some of Cary playing with it soon!

So while this was going on some mama blogging friends of mine in different states have had children hospitalized.  One of the mom's blogs has really gotten hold of my heart.  Mostly because her little boy mirrors so many of my daughter's complex needs.  Her blog is here. Caden and many other children have so much going on.  Their families live in the hospital.  The things that mean the most to me when I am there is the hot meals delivered, the company (it is boring sitting there), and the little gifts that just lift your spirits and say hey I'm thinking of you!  So I have been sending out care packages.  Shhhh, don't tell.  

These are just some of the things that I enjoy when I take my "vacations" to VCU.  Haha. Anyway, a few of these boxes have been dispatched and the recipients should get them by next week.  I have really enjoyed doing this.

So many people have done amazing things for our family.  After a while the thank you just seemed so shallow and empty.  Life is bumpy and sometimes the going is hard for our family. For me.  But I always hold on to the good that happens and we always make it through:).  It's past time for us to spread it on and I'm so ready to pay it forward!

Cheat Sheet

I have always promised to be honest in the blog.  I would rather have the truth even if it is cold, hard and painful than a pretty well dressed lie.  Sometimes the way I see truth is different than others do.  But even if you disagree on it, it is still my truth.

The truth hurts at times.  This last week the truth came and smacked me over the head. Hard.  I still have some lumps left on my heart and cuts left in my soul.

It started out with a visit.  For a while I had been asking a local organization to come out and meet our family.  I had found the organization on line and loved the support that they offered.  I really wanted to be part of it and I know some families that are.  They rave about it.

It too some time but they came to my home.  They met me and Cary Lynn.  Then they wanted to ask questions.  Sure, no problem.  I glibly claimed I had answers.

The first question, "Would you put a trachea tube in your daughter?"  What???  Well, I have been asked many questions before, but have rarely been stumped like that one.  I had to think.  Well, I know many kids in my SN circles that have them and really I already had stuck a tube in the child for nutrients, what's one more?  "Sure."  I say slowly.

Do you wish in life that sometimes someone would just dangle a giant fish line from the sky with a piece of paper attached to it saying here are the answers to these questions.   This was one of those times.

The questions were hard.  The consisted of quality or quantity of life and would I resuscitate?  I was told there are no "right" answers, but I felt for sure that there must be.  There has to be an answer.  So I answered.  I'm not going to go into what I answered, but I felt that I was making the right choice and holding up my beliefs.

While it is hard to answer these questions it is still harder to pretend that they don't exist.  To not talk about them or even think about them.  The truth of the matter is that Cary Lynn has multiple special needs and is medically fragile.  It is a fact of life like the sky is above us and the ground is below us.  It also does not make this organization mean to talk about these things.  They are trying to help us by supporting our family with these choices.

It also does not mean that I am pushing Cary Lynn into her grave.  Believe me when I say no one loves her like I do and no one wants to keep her here forever and a day like me.  But sometimes you have to look at the truth and decide whether you are going to deal with it, ignore it and hope it goes away, or run from it.  I am many things, but I'm not a coward.  Nor am I going to pretend these things don't exist.  They do.

What it does mean is that each moment is a little more special.  I cherish time with my kids.  I enjoy the little moments and inch stones.  I laugh more and love a bit harder.  I hold tight to my little miracles.  Both of them.  I don't spend as much time sweating the small stuff (well at least I try not to).  We also don't spend every day dwelling on our mortality around here.  That is morbid.  And unhealthy.  Mostly I spend my days trying to figure out where the magical elf lives who steals the mate to my children's socks and why I can't ever find my keys and favorite coffee mug.  We live our lives like you live them.  We aren't saints or heroes, just regular people trying to navigate extraordinary circumstances.

In the end I'm glad I had the conversation.  I needed to have it.  It hurts, but it also heals.  I love my daughter.  She isn't worried about what tomorrow brings into her life.  She is a happy and joyful child.  No matter what she always has a smile.  She is strong, brave, and in my eyes pretty much perfect.  So we will celebrate each day and enjoy each moment.  I will leave the future to take care of itself and dwell in the present and in the moment with my little ones.

The Tube and I

It has been a super challenging week.  And a hard one.  When your child goes in for surgery it is expected to be stressful as is but we had a lot of nasty surprises along the way.

We went in last Wednesday.  Because Cary has DI she needs fluids and extra is always good so we checked in to casa VCU medical center in the morning and hooked her up.  Surgery was scheduled for about 9:30am Thursday.  No biggie right?

Well, it started going down hill pretty quick.  We were bumped and told that we were the third instead of second on the docket.  No big deal.  But the surgery that was supposed to happen early in the morning didn't happen until about 6 at night.  When your child has an underlying condition (DI or anything else) the more you keep them off their schedule the wonkier they get.  Even with an IV Cary was wilting.  All I kept getting was an I'm so sorry swan song, but no results or action.

Then there was the "training".  The gi surgery nurse came in and announced that she was going to be my new best friend.  Cary was screaming and she told me that she was here to show me the ropes. I asked if she could show me after the surgery since Cary was a mess, I was stressed out, and Cary had no tube in her to practice on.  The nurse assured me she would be back later to show me the ropes and spent 3 minutes naming the parts and what they did and buzzed on out.  OK.

We did make surgery.  We made it through surgery.  And now my daughter has some new hardware.

This is the tube several days post-op.  She has some extra stitchery.  They inserted a camera through her belly button and placed it in.  It has two areas.  The top is where you put the food in and once the stitch that holds it in place is removed I shall be able to burp or vent extra air through the tube.  Fun for all.  The bottom hole is where you insert water to hold the balloon in place that anchors it in.  If your balloon pops or deflates you need to have pretty quick reflexes to save the day.  Let's hope for Cary's sake that that doesn't happen anytime soon.  

Now there is also the outer extras that help with the process.  

On your left is a Ferrel bag.  This helps "vent" Cary Lynn.  She is hooked up to this 24/7 for the time being.  On the right is the feeder bag where I place her pediasure and water.  Below is the pump which puts it all in her.  It is not a great pump, but hey at least I had it on hand.

Here is the tubing and that little orange tip is the Ferrel bag.  It attaches to the port.  Cary has more clamps, attachments, and gadgets than my DVR player.  I have been calling her my little robot.

I will have to say that this has all been a nightmare.  When the surgery was done the floor nurses insisted that the gi nurse train me.  The gi nurse insisted that the floor nurses train me. So I ended up watching a lot of You Tube videos and got a nurse who spent a few minutes with me.

Then there was the fact that no one thought that I might need supplies.  Thankfully, I have some awesome tubie mamas who stepped up to the plate.  The mama I got supplies from even bought my kids webkins which they love!  Cary Lynn has been toting her pink poodle with her everywhere.  After spending 45 minutes on the phone with my supply company today I will have some supplies for my daughter.  Some are back ordered (like seriously, how do you run out of gauze?), but we are making progress.  The sad part is that I got Tupperware from my cousin's party in Minnesota before I can get medical supplies for my daughter on the other side of town.

Then there was the nurse that I was supposed to get.  Yes, when you get extra gadgets on your child you are supposed to get a home health nurse come out and check on you so you aren't tubing your child's ear.  I'm not by the way:).  I am having trouble remembering to unclamp Cary so she "flows" but at least I am mostly getting stuff in the right spot:).  So once again the nurses are playing a game of its not my job.  But once I called my feeding program and explained that Cary was dropping weight due to how the drs and nurses and hospital nutrition were handling the feeds.  I now have feeding looking into a nurse for me and promises of nutrition support.  I know K.  She will deliver.

It was tough.  My floor Dr was a student and really green behind the ears.  He didn't understand complex kids.  VCU isn't my favorite place.  There are a few Drs and nurses that I love love love.  However, most of the time the right hand doesn't know what the left hand is doing.  It can be really scary at times.

But we pulled through.  I have support.  I have a community of parent with SN kids that I can call in a flap 24/7.  And trust me, I have been in a flap quite a bit lately.  I know I will get it. But I also know that I can be a big time spaz and little things can freak me out quite easily. Ask my husband and Cary's nurse.  Although, her nurse claims I have gotten a lot better.  So does my husband:).

Am I thankful that I did this?  All of Cary's specialists claim I will be thankful.  So do most of her therapists.  The truth is I'm not thankful.  I wish she didn't need this.  But she does.  Cary Lynn has lived through a lot.  Her body betrays her daily.  I see her silent struggles to do things.  I see her try super hard to make her body do what her mind wants it to do.  But her body at times acts independently of her mind.  It can't always eat well, chew well or take in enough nutrients to thrive.  That's why we have a g-tube.  It was a road I didn't (and still don't) want to travel.  But we are walking down that road now so I have to make the best of it.  I will adjust.  I always do.  And so does Cary.  We are both survivors.  And we are both blessed to have a lot of love and support.  For now that is enough to keep us both in the fight.