My Family

My Family

Thursday, December 11, 2014

Baking Memories 4 Kids

I've had a secret!!   A big one!!!  And I managed to keep it from the kids and that is a pretty darn near unqualified miracle around here.

Let me backtrack a bit.  To about the summer/ fall before.  Our family was nominated by another awesome family for a trip to Disney World.  This trip is expenses paid and we stay in the Give the Kids the World Village.  It is an amazing opportunity and a very big blessing for our family.

Baking Memories 4 Kids is non profit and is an awesome organization.  You can lean all about them by clicking here.  They are also on Facebook and you can find them and like them there.

So how do they send kids and their families on these trips.  By baking cookies.  And they are darn good cookies!  So good this gluten free lady committed a big no no and ate one (or two I'm not telling!!).  They are yummy, home made, and every container of cookies people buy help send families with terminally ill children or children with life threatening medical conditions to Disney.

We are excited to go.  We go in February.  Today was the big reveal.  We were allowed to invite friends, family, and the mail man (she was busy though lol) to Panera in Charlottesville.  They have been so amazing in supporting Baking Memories and hosted our reveal party today.  They also gave us lots of yummy food!  Always a plus in my book!!

We arrived at the Panera and Frank was already there with the news!  We got to be TV stars:).  I don't think Marvin quite realized what was going on at first since I told him we were taking a day to celebrate my birthday and meeting our cousins.  Even bumping into my two friends didn't tip him off. Now that full realization has sunk in he's making plans on what he is going to do (and Amanda, I'm sorry to say he doesn't want to ride an alligator.  He's worried it will eat him, lol).  Here are some pictures of our day!


Here we are with Frank.  He lives to surprise the kiddos!!  It was worth keeping the secret for so long to see the look on their faces!!

Cary Lynn, the star of the show, got plenty of attention.  Amanda, my friend, whose family is going with ours the same week loves my little girl.  And Cary Lynn loves Amanda.  Just mentioning her name brings smiles to my little girl's face and that means a lot to this mama.  Grandma also got lots of cuddles too!  For a little girl who spent so much of the beginnings of her life in a sterile hospital with not a lot of attention she makes sure she gets it now!
Marvin is hanging out by the camera.  My little man who is so charismatic in small groups was a bit overwhelmed today with all the attention, but he did great!

I love my kids.  This vacation is a chance for our family to live a normal life for one week.  One that doesn't involve doctors, therapies, and all that jazz.  For a family like ours these moments are precious.  Because we don't know what's going to happen in the future.  Every moment we can spend together is precious and when you live with a medically fragile child it's something you don't take for granted.

Thank you Baking Memories 4 Kids.  You have given us an amazing gift.  I'm so grateful for this chance and we are so ready for this trip.  Marvin is packing a backpack as I write this:).  We are ready and so excited!  Thank you seems inadequate but you will never know how much this means to us!!  Look out Disney, here we come!!

Thursday, November 27, 2014

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.  


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.