Sunday, May 29, 2011

Another butterfly is born...

It was the morning of C's evaluation...

I sat with Addie and watched as the second butterfly hatched from it's chrysalis.  We had several caterpillars living on our kitchen counter for the past few weeks...and they were finally turning into butterflies.  It was an exciting morning.  In the back of my mind I thought..."Is this a sign Lord?...What is today going to bring?".  But I was busy enjoying the moment with Addie...busy getting ready for the day....C was busy with his trains.  It was a typical morning.

You would think the second time around you would be more prepared...more knowledgeable...more understanding of the diagnosis.  But I am here to say...I was not.  It's just as hard, just as heartbreaking, and just as much a process of grieving as the first time you hear those words..."Your child has autism".

Over the past few months we have been increasingly concerned with our son C's spinning, sensory issues, language development, social skills, odd behaviors, and the list goes on...  So we decided it would be smart to have him tested.

Driving to the hit me....I put on my sunglasses so no one could see me cry.  I kept praying..."Lord I can't do this again....I can't hear those words again....I just don't have strength...I don't have the time to see more therapists...I can't do this....he already has so many other health are we going to make it...he's so happy....he's so different from Addie...there's no way he has autism too".  My mind was spinning...and my stomach was churning.  Finally we got a parking space.  He likes to I buckled him tight in the stroller.  We walked about a block and headed in the building.  Of course, he loved the elevator...tilting his head back and waving his arms in the air.  "EEeeeeeee" he was screaming the whole way.  He loves to be in motion.

We finally make it up to the waiting room for the early intervention program.  Immediately C finds the knobs on the pretend stove and starts spinning them...over and over.  My heart sank as I watched him.  Then the psychologist walked in...he quickly started taking notes and observing him.  I tried to get C's attention to make him stop the odd behavior..."C..C...come here C".  He didn't hear me...he was in his own little world spinning the knobs.  I was thinking "I know this looks bad...but he's not really like this".  Then he noticed the cabinet on the stove.  He opened and closed it...banging it loudly... over and over....bang...bang...bang.  In my head I was thinking..."Why is he acting like this?  He doesn't do this normally".  Then a cold chill came over me.  I realized more than ever....I was in denial AGAIN.  He IS like this....this is my little C and this IS how he is.  He DOES act like this normally.

Then the process starts...several hours of questions, tests, screenings, and evaluations.  Meanwhile...C is running around the room...slamming his stroller into the walls...jumping off chairs...spinning...flipping.  It was an exhausting process.  Suddenly he became fascinated with a plastic bottle they gave him...screwing and unscrewing the lid over and over and over.  The psychologist tried to get his attention to no avail.  He finally decided to flip C in his arms over and over.....then he was in heaven...flipping over and over and over.  Screaming and laughing...shaking his head around....he was being my happy little C.  I was watching everyone taking notes...and questioning...I knew what they were thinking.  I knew what they were going to say.  I was just hoping it wasn't so.

They sent us back to the waiting room to discuss his test results.  Sitting there alone with my little boy...C spun the knobs over and over....then he wanted to jump off the chairs over and over and over.  Constantly seeking...constantly in motion...constantly smiling.

Then everyone walked in the this point... C was crawling through a pretend school bus window and jumping off the hood over and over and over.  They gave me the criteria for being accepted into their early intervention program.  Then they told me that C would definitely qualify.  In robotic fashion they told me that he had the language skills of a 7 month old...the blah blah skills of a 10 month old...blah blah blah.  I couldn't hear anything past 7 months old.  HE IS 19 MONTHS OLD.  He's more than a year behind.  It was like a slap in the face with reality.  It was overwhelming...I couldn't hear anything else they said after that.  My mind was whirling...."we have to help him....what have we done wrong...I'm a terrible mommy...why didn't I know before...what is wrong with C".

They went through all the concerns that they had for him.  Finally they said IT... "we think has autism...but we want to see if he improves with therapy and gets a little older... before we give him an official diagnosis".  There it is...they said it.  AUTISM.  I was crushed to hear those words... I knew in my heart that it was so...but it was still so crushing.

I held it together until we left the office.  I broke down in tears when we got to the car...I definitely had a weak moment with God.  I looked back at C's smiling face...he was dancing to the music on the radio...beautifully oblivious to what had just happened.  "Why my sweet little boy too?....Why God why?...How on earth am I going to be able to handle two kids with autism?".  Once again the Lord quietly whispered to me ..."you can't handle can't handle it alone...I will be with you...I will give you the strength".  Just when I think I have everything figured out...just when I think things are settling down....WHAM....I'm stopped in my tracks.  Once again I learn I CAN NOT do this alone...the only way I can do with Christ by my side.

When we finally got home...I sat there watching C....analyzing his mind whirling from all the therapist's had said.  He seems so different to me...he has autism...everything had changed.  Then I realized...he's not any different today than he was yesterday.  The diagnosis doesn't change him...he's still the same...he's still my little precious little boy.  This doesn't change anything.  It just means therapy...early  It's the beginning of a new journey...a new adventure....a new butterfly journey.

My little C will have his own butterfly journey...and everyone's life that he touches will have their own journey with him as well.  He is amazing and perfect....and EXACTLY the way God intended him to be.  He is precious in HIS sight.  I am so thankful to have these children that God has entrusted me with.  I can't imagine our lives any different.  It's crazy most days...but it's life...and it's the life God has given me....and I'm thankful for that.

We are so blessed to have two beautiful butterflies.  Two children who see the world in a completely different way.  Two children who show love in ways that not many understand.  Two children who just need others to believe in them and see their strengths.

God doesn't make mistakes...and He made Addie and C...perfect in every way.  I'm so thankful for these two amazing little people in my life...and all that they teach me every day.

Thursday, May 12, 2011

Pop Pop's Birthday Poem

This is a poem written by Addie's "Pop Pop" (aka my dad)...

Through your bright & glistening eyes,
   Caterpillars always turn into butterflies,
       Floor tiles form secret passageways,
            Flowers are to be picked & treasured always
                 Pretty, pretty...

Through your cautious listening ears,
    Loud noises can suddenly bring the tears,
         And every sound must be explained,
              We might have missed it unless we strained,
                   Kitty, kitty...

Through your ever moving hands,
    Play dough transforms into pizza strands,
         Rocks must be thrown and must not stay,
              Upon the ground no not today,

Through your constantly moving feet,
     Cowering at times from new people to meet,
            Or running to find a puddle or a bug,
                  Or to Hello Kitty to get a soft pillowy hug,

Through your tiny voice oh so sweet,
     Or like  a booming intercom oh how neat,
          You can stop a toddler right in his tracks,
                Or bring us back....just to the facts,

Through your mind so constantly new,
    Nothing escapes your ever present view,
           You're like a sponge absorbing it all,
                 While keeping perfect balance on top of a wall,
                       Look at meeeee....

Through your years now almost four,
     As if God's creation you were to underscore,
           You teach us daily what we otherwise might miss,
                Stopping to notice, is that a plane?
                      Making trails in the sky?

Through your smiling face we see,
      A childlike trust that Jesus will be,
          Your protector from every earthly foe,
                So big and strong you'll someday grow,
                       Just like a beautiful butterfly!

Written by: Steve Hill "Pop Pop" - 2011

Sunday, May 8, 2011

Being a Mama...

These are some life lessons from "Mamahood" 
(and yes...we say "mama" here in the south) ...

I think every mother would agree...that NO ONE could have prepared them for the job of "MAMA".  From the moment you see those two pink lines or that little "peanut" on the ultrasound or get the phone call from the adoption agency......your whole world changes.

All the thoughtful advise...books...and classes in the world cannot prepare you for ...4am feedings (when you just fell asleep at 3)....the strange sticky goo that seems to cover everything 3ft and down....the never ending stream of snacks and sippy cups....dancing in your car even though you look crazy just to make your child laugh...the insane amount of trips to the emergency room and the doctors...two kids screaming in stereo at ear drum piercing decibels in the car...sitting alone in an office hearing "your child has autism"...holding down their sweet little legs when they have to get a shot...having to bring the whole closet of toys in the bathroom so that you can entertain the kids while grabbing a to fit two kids in the buggy AND a weeks worth of grocerys...walking on red lines and watching out for cracks to avoid meltdowns...knowing where every "quiet" public restroom is (even if you have to befriend the manager at Stride Rite)...advocating and standing up for what your child needs...swallowing your pride and asking for help...realizing half way to work that you are still listening to "twinkle twinkle little star" for no reason...I could go on for hours...

Being a mama is the most selfless duty on earth.  But even though there are many days I feel like all I do is GIVE and GIVE.  When I stop to reflect ...there is so much that I am GETTING from this many lessons I've learned from being a Mama....

Being a Mama... I have learned why my own Mama did the things that she did.  I know why she "had eyes in the back of her head"...and I am thankful that she did.  I know why she said that "punishment hurt her more than it did me"....but I'm glad she stuck to what she said.  I know how hard it was to say "no" when she really always wanted to say "yes"...and I wouldn't be where I am today if she hadn't.  I know why she didn't mind sacrificing her career and dreams to be home with my sister and I...and I can never thank her enough for that.  Becoming a mom has shown me what an amazing person that she is.  She is truly my hero...she is not perfect and she will tell you so...but she loves the Lord with all her heart ...and I can honestly say that anyone that has met her would tell you so.  She breaths light in a dark world.  I am so blessed to have such a woman of God in my life and so thankful that she is my Mama.

Being a Mama....I have found a love so strong that I never knew I could have.  From the first the caterpillar "presents" the doctors telling you your life will never be what you sneaking in their room to give them a goodnight the millions of therapy enormous melt-down in the middle of the the precious prayers at bedtime.  You realize a love so deep that you can't imagine anyone being able to love someone more.  You love your child when they are throwing up...or screaming mad...or laughing hysterically...or after they have made a complete "masterpiece" out of your antique rug. These lessons in unconditional love have made the unconditional love of Christ so much more real to me.  He loves me even when I make the hugest mistakes...sometimes so big that I cannot even forgive myself...He keeps His promises....forgiving me and loving me.  And He does this because I am His precious child.

Being a Mama...I have learned that I cannot do this alone.  I once thought that I was pretty much in control of my life.  "Life is what you make it"..."Pull yourself up by your boot straps" know the drill.  But the Lord has shown me over and over again (He tends to do that when you don't get the point the first time) that I am most certainly not.  Sitting in office after office hearing that your child has a neurological disorder that cannot be "fixed" or "cured"...sitting through hours of therapy...filling out pounds of paperwork...staying up until all hours of the night trying to figure out how to pay for it all and still put food on the table.  I have learned the hard way...that I cannot do this alone.  The old saying that "God will never give you anything you can't handle"...WELL, that isn't exactly true.  He ALWAYS gives you things that you can't handle.  You can't handle them without Him.  Mamahood has drawn me closer to God and my faith in Christ Jesus.  There is absolutely no way I could do this alone.

Being a Mama...I have learned that the sacrifices you freely and thoughtlessly give are immeasurable.  Mama's truly give until there's nothing left to give.  You begin to fully understand the amazing love that God has for us that He would send His only son to die for that we might live.  I can't imagine sacrificing one of my children.  But I think in some ways...that's what He asks of us.  They are not ours...they are His.  He made them perfectly in His matter what type of special need they may have or how different they might be...they are perfect images of Christ.  It's a process of laying your children at the foot of the cross.  It's a process of letting go.  God is constantly reminding me of this when I am overwhelmed...tired... and just grieving over this rocky journey.  He is there to bear the load and take away my every fear... He has already made the ultimate sacrifice.

Being a Mama...I have learned what "faith like a child" really means.  Addie, in particular, takes everything very literally.  Her faith in Christ is no different.  I feel like that is one of the "gifts" of her autism.  After talking to her about how Jesus is always with us even when we are afraid, she was screaming in the bathroom about the flushing toilets.  All the sudden she stopped...and started screaming "Jesus is with me ....Jesus is with me....Jesus is with me".  Everyone in the bathroom was staring...some laughing....but I had tears in my eyes.  Her faith amazed me.  You know...she really "gets it" better than we do sometimes.  Her faith is so honest and pure.  After telling her about asking Jesus into her heart...she immediately opened her mouth as wide as she could.  At first I wasn't sure what she was doing...I thought maybe she didn't understand.  So I asked..."what are you doing?"....I got chills as she said "come inside Jesus".  Now she tells people that Jesus is "inside her belly".  Every story we read about the Lord she takes literally word for word...she doesn't read into any theology...she doesn't question it...she just believes.  She has taught me so much about my own faith in so many ways.  It is truly a childlike faith.

Being a Mama...I never thought I could do all that I do...I never thought I could pray as much as I've prayed....I never thought I could endure all that we've gone through...I never thought I could cry as much as I've cryed....I never thought I could love as much as I've loved...and I never thought I could be as FULL and RICH and BLESSED as I am by these precious gifts that God has given me.

Mamahood is a process of letting go and letting God.  It's not a journey for the faint of heart.  Some may have it a little easier...some a little harder...but either's a journey that will leave you forever changed.