My Family

My Family

Tuesday, November 18, 2014

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.  

Monday, November 10, 2014

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.

Monday, October 13, 2014

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.
video



Wednesday, October 8, 2014

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:)!  

Friday, September 5, 2014

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.  


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.