The sound of Silence but the Actions of LOVE.

We all know that one person, maybe more, who just seem to talk and talk and talk.  They are the person that can make friends with a tree.  Most often than not, some one will get annoyed with just how much they can talk.  But to that "Chatty Cathy", talking is just their way of life.  Its just what they do.  Some even make a living out of it.  Some spend their drive to work talking to them selves, or making phone calls just to talk to someone.  Its just who they are and what they do.  They talk.

Every day when I get off of work, the first thing I do is call Gabe to see how his day is.  Its a routine.  12pm phone call.  Some days, our chats are longer than others, and some are just real quick and to the point.  I love to hear his voice, and its just a calming sort of peace for me.  We usually share a laugh or 2 and always hang up with an "i love you, gina" (gina is my nickname.. long story).  Today was one of those "hey someone is in my office, ill call you back in a sec"  "ok, bye", and I continued my drive home.  As I stopped at a red light, I grabbed a set of papers that I have to fill out for Brody's dr apt tomorrow.  Another Dr. apt.  These things are never ending.  Its his 16th month developmental apt.  Every 6 months we have to go so they can track his development.  And I cringe at the thought. I cringe, because if we were not medically dependant, this wouldst be an issue. I cringe because we are "followed by doctors".  Every time I have to fill out these papers, I.CRINGE

Today's cringe of the paper work was just a bit harder than usual.  It was like someone just came out of the paper and punched me in the face.  The very first section was "COMMUNICATION".  Does your child say four or more words IN ADDITION to "momma and dada"? My first and only thought at that moment was "WELL NO YOU JERKS, MY CHILD DOESN'T SPEAK!"  And then the tears poured down like rain.  It hit me.  I just want to hear my child say "i love you, momma"  I want to hear him call out for me and gabe.  I long for that sweet voice that I know is inside of him to just say "hi, bye, momma, daddy, i love you" any thing.  I just want his sound.

His sweet little sound.

When will I hear his voice.  I have waited for that moment since I found out I was pregnant.  I was soon going to be a momma with a little nugget running around screaming.  Telling me he/she loves me.  Telling me random things that would make me laugh, cry, cringe.  I was always gonna have that little voice that I would call "mine".

I sat at the light and cried.  Thinking of the fact that I may never get to hear the voice or the 3 sweet words every parent loves to hear "I.LOVE.YOU"

At that moment, as I threw down the papers, my phone rang.  It was Gabe calling me back to finish our convo.  In a short 5 min, I went from my "peppy" self, to a "somber pissed off with a heavy heart" kinda person.  The tears were rolling down and I just had to let Gabe know how my heart was hurting.  I ranted for a while, talking in between my sobs.  "Why us?"  Why can I not hear him say "i love you".... Why do they have to send us THESE papers.  They know my child doesn't speak.  Cant they send us some with out this section? Every time I read the questions, it was like I was getting hit!

It was then that Gabe said the most truest words I have ever heard.  "He may not say it with words, but he ALWAYS shows us in his own way that he love us"  It may be with his excited little squeaks, his random open mouth kisses, or even the pull on my nose.... but he will always have his own little ways.

And just as quickly as the rain stopped, my tears were gone.  He was right.  Bear will always know just the right way and time to not tell me but SHOW me that he loves me... because like the old saying goes "Actions speak louder than words"

So with this CHRISTMAS season upon us, I ask one thing of all of you... go SHOW some one you love them.  Sit and listen to some one speak.  Enjoy the sweet sound of your child's voice.  And above all else, NEVER be afraid to use your voice in a way that you want to.  Sing, laugh, cry, shout, do what you can with your voice, and never take for granted what you have, because some of us don't get that.

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With a loving and hopeful voice,
S

P.S.  There is a device that we can HOPEFULLY one day put on his trach to help him make sound, but at this moment he is not ready for it.  We have tried and he failed the test run.  Hopefully soon or when we go to Cincinnati, we can try again.  But for now, its just not for us.

All is calm, all is bright!

The holidays have ALWAYS been such a big and important part of my life.  Its always filled with good fun, lots of family time, and too many friend gatherings to handle.  This year is no different. Well, it sort of is, because we have a 15 month old.  Last year, our holiday season was a bit gloomy, because we were still reeling from bringing home baby, and getting ready for his first brain surgery (5 days before Christmas).  It was like we could never just catch a break. If things even calmed down for a bit, something was thrown our way.  But we over came every obstacle and had EVEN more to be thankful for.  A year has come and gone, and all I can say is that - ALL IS CALM, ALL IS BRIGHT.  

Bear has really been movin' and a'shakin lately.  The little miracle boy that has brought so MUCH joy to all of us, is just AMAZING Gabe and I every day.  He keeps us on our toes and is a TRUE boy. (he toots and laughs about it...how much more "boy" can you get) We have been working on a lot of milestones with his all 3 of his therapist and they are so amazed at his progress.  He is a little behind on some stuff, but continues to improve every day. We are getting ready for that moment when he just takes off and starts walking, but for now, walking along all the furniture and windows will work for us.  He LOVES to get into anything and every thing that he isn't supposed to have.  If you have it, he wants it, and when he doesn't get it, you get his little temper tantrum.  Typical baby, I suppose.  He make us laugh with all his squeeks and squeals, and when you don't pay attention to him, he YELLS at you (just ask gramma Mary).  He is learning a little bit of sign language here and there, but our favorite is when he ask for "more".  More of anything, but especially food!

His eating by mouth was always a little delayed, and I think it was because he had been throwing up formula/breast milk EVERY day.  That nasty taste it left in his mouth just set him off from food.  Im happy to say that he hasn't thrown up since SEPTEMBER and has really made a turn on eating.  He woke up one day and just decided that food was an awesome thing.  He loves eggs with ketchup, chocolate cake (thanks Gramma Mary and Auntie A), cookies, and well basically anything but "mushy baby food".  Gabe is still convinced that he is getting more on the floor than in his stomach, but hey, baby steps..... we are still learning! Its amazing to see him stuff his face, and if I wasn't too busy stuffing my face on Thanksgiving, I would've taken pictures of him stuffing his face.  It was SUCH a blessing and we are so THANKFUL that he is taking huge strides on eating.  Hopefully one day soon (*crosses fingers*) we can get him off the feeding tube.  

As most of you know, we have been taking trips back and forth to San Antonio to get his helmet adjusted.  After his last skull surgery in August, his dr wanted to get him in a helmet (doc band) to get just the right amount of shaping.  He hated it at first and it was something to get used to, but now its just another thing in our life.  All I can say about it is WOW.... the change is AMAZING.  Not only have both of his skull reconstructions been SUCCESSFUL, but this helmet has really been the topping on the cake (chocolate, if you must ask )  It is so amazing to see how far medical technology goes.  I never would have thought that my child would have to be a part of "medical numbers" or "medical scans and followings" but we are, and to see the change each month is just truly a blessing.

He has to wear is for 23 hours a day, for 6 months.  We are going on month 2, so just a bit longer to go.  I have yet to paint it, and EVERYONE is telling me that I need to, but I just cant pick a design that will match ALL of his outfits... I know... such a decision to make 

 

 A couple of weeks before his 1st skull surgery

His first skull surgery included distraction hard wear (screws) that we had to turn 3 times a day that pushed the back of his skull out and gave room for his brain to grow. 

His third surgery was to fix the top "bump" and move his forehead forward

 He's just as happy as can be, even with his helmet

He sure does enjoy that HOUR a day he doesn't have to wear it though

Just playin' while waiting to get his helmet adjusted

ALL is CALM , ALL is BRIGHT

Next month is going to be HUGE for us.  We finally got the go ahead to go see the trachea specialist in Cincinnati and the appointments have been scheduled!  We are in the process of booking flights and hotel.  We got our itinerary in the mail a couple of weeks ago, and it looks like its 4 days of procedures, test,scopes and anesthesia.  It will be a long scary week, but I am looking forward to hopefully finding an answer.  I am faithful that they will be able to do something for him. And any thoughts of getting bad news is being thrown out the window.  I cant wait to take him on his first airplane ride, and all thought its not for a "fun" trip, Im sure the traveling experience is going to be one to remember!  

I hope that ALL is calm for you and your family, and I hope that ya'll are shining BRIGHT this holiday season.  I pray for a happy and healthy up coming year for each and every one of you and your family.  

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Much love and lots of warm hugs,

-S