My Family

My Family

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.  

Saturday, June 14, 2014

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!  

Friday, May 30, 2014

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!  

Saturday, May 24, 2014

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.