Friday, May 4, 2012

My heart ... hurts.

Azlan Honor.  I am so thankful for ... you!

This morning during school...I walked away and cried. Dried my eyes...and came back to sit down beside Azlan.  You see when you can't hear (I know ... that's all about to change...but for 5.5 years he has had complete SSD ... single sided deafness) and you were born with a level 3 cleft are just at a disadvantage when it comes to school.  Because...if you can't hear the sounds clearly...and don't have the ability to say the sounds...then when you say the name of the picture you are looking can't tell which letters you are saying...and....

Azlan Honor....

...may you always have someone in your life that has a very soft spot in their heart for you.

So today we are learning the "J" sound.  He has a page in his school work with lots of pictures.  He has to color the "J" sound words.  He says all the words ands starts coloring several.  None have a "J" sound.  So I sit down beside him and he goes through them again.  A picture of a sunshine.  He says it out loud. "sun".  He says "dun".  He looks at me all excited "I hear it I hear it!" and starts to color it.  I come closer..."watch me..."ssssssun"....he looks at me puzzled.  "How come when you say it I don't hear it but when I say it I hear it?".  I told him to write his name on the top of his page while I went away and cried in the bathroom. me teach him.  Help me find a way to jump over this hurdle...I don't understand how to cross over the you-can't-say-it-or-hear-it-properly to but-you-must-know-it-and-learn-to-read.  He's doing so well. He reads so well in school even though it's so hard for him. It's only b/c I know when he says "dun" that he's saying "sun" and yes we work hard on that..and no we can't get an 's' sound out of his mouth...but we don't give up.  We give high 5's and cheers and kisses and tell him he's awesome and secretly in my heart ... I cry...and I pray.

He never complains that he can't hear or talk properly ... yet knows it.  Dean asked him for the broom a few weeks ago...and he asked Daddy a question that daddy couldn't understand so he said "hold on..." he came back with a drawing of the broom .. .complete with dust pan attached...and the swiffer mop and said "which one?"  Melt my heart.

Tonight he asked what was for dinner so I told him that I was making chili.  He said "I don't know what you are saying....hold on..." he came back with a pen and paper and said "draw it".


Tonight he was in the bath with Izrael and I sat beside them and as I washed his hair...I was wiping the tears away.  His scar from his BAHA is...not looking nice.  It looks infected to me. But then again..I'm no professional. It's red. Oozing and the skin is caving in around the screw. It's the biggest lump in my throat to look at it and clean it up.  Dean thinks it's just the swelling going down therefore we are seeing it as it really is...caved they thinned the scalp. We called his ENT and surgeon and he said it sounds normal and we are still applying antibiotic ointment 4x a day. He had his full round of oral antibiotics.

A lady I work with is an Audiologist and she has helped several BAHAs be implanted though version 1 and 2 (this is version 4).  I texted her a picture tonight of Azlan's head and she said it looks ok to her but that "this was a humongous surgery in your baby's head...and I know how hard it must be as his mama to see this".  I had a lump in my throat reading it.

So...we will keep learning the "j" tomorrow. Even if he can't say it...he can read my lips as I say it to him and watching the excitement on his face as he says "I heard it I heard it" is simply the best.  Today we were practicing and all of a sudden in the middle of his toughness...his lip quivers and he said "Mama...I just can't do it...I'm trying my best".  I wasn't pushing him...we were just really emphasizing the sound and he was doing really well but inside...he's panicking.  I feel I can look into his huge eyes and read his heart..."why can't I just talk as I can...? Why can't you all understand me and I you and we just live without all this therapy and effort...? Why can't we all just be happy with how I am...?" and my heart breaks.  It's a long road baby boy.  I will love you forever.

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