My Family

My Family

Monday, September 1, 2014

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!

Friday, August 15, 2014

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.

Friday, August 8, 2014

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.

Saturday, July 26, 2014

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!

Saturday, July 12, 2014

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.


Tuesday, July 1, 2014

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.


Friday, June 27, 2014

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.