Special Needs

Today I realized I have a special needs son. He can not talk to me, he often stares and does not communicate with my world. He won't ask for a toy, he'll scream but he won't say what the toy is.

My world is rocked by this child. How will I be able to be his Mom and live with him not being able to speak to me, it's such an unknown and suddenly I realize communication means more to me than ever. Not knowing so much about him.

What is his favorite????? Oh so many questions. What do you want to eat? Drink? Say smoothie I begged him, no words came from his lips. Do you want a smoothie? I am passing McDonalds if you want it say smoothie. The words don't form, he does not tell me what he wants.

We went to Krogers and he wanted a toy, but I told him I would not purchase it unless he said the word Mater or Please. These words were never even attempted, all I knew was he wanted the toy. He cried all the way home. I am at a loss for what it means to realize my child is not what I expected. Will his communication be like this when he is five, how long until he forms words and sentences and can tell me things. My heart is broken.

In the end I return to McDonalds and purchase him a smoothie, he does not eat a hot dog today. He only drinks and I wonder if there is more damage or proportion size is off to his throat, and why today he does not want to eat.

I Love You

I love you from your head to your toes, to your little button nose, I love your eyes and your ears, and your little, little tears, I LOVE YOU BABY.


Every once in a while, I sing this song. I love this kid. He has started saying a sorda No. It is hard to explain how he says it. You understand what he wants, and doesn't want, but oh I wish he would talk. He's almost three and his vocabulary is so limited.

Right side is smaller than left

Or his Left side is larger than his right. This morning for the first time I saw it in Nathan's face, his right side of his face is smaller. I wonder if I will be the only one to notice this for a long time. He sure is cute, and spoiled, and loved. I am enjoying his little boy time, all too soon he'll grow up.

Two lollies in his hand he has raided his brothers room. Ut oh, Mater from Cars 2, and a happy running around 2 year 9 month old, is what matters in life, not so sure two lolly sticks while running is a good idea, but he's having a great day.

Yahoo group for HemiHypertrophy

There is one, I joined today. It has been helpful and discouraging all at once. It is kind of like reality hitting me in the face. My son is different. Do people know this, if I tell them, will they eventually know yes, he'll grow older, and what will it be like when he is 5?

His voice is so high, I have only known one other kid with a voice this high. I wonder if he had hemihypertrophy. So many questions that are left unanswered.

Nathan's dedication Song

Navigation: M \ Mark Schultz \ He's My Son

I'm down on my knees again tonight
I'm hoping this prayer will turn out right
See there is a boy that needs Your help
I've done all that I can do myself
His Daddy is tired
I'm sure You can understand
Each night as he sleeps
I go in to hold his hand
And I try not to cry
As the tears fill my eyes

CHORUS:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son

Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there

CHORUS

Can You hear me?
Can You see him?
Please don't leave him
He's my son

February 5, 2009

A birth like no other birth I have had. My birthing story of Nathan is one of wonder for me. I was 39 at the time. It was an incredible experience, like I had wanted with my others, except that I was in a hospital. My midwife was wonderful. Nathan was born not long after getting to the hospital. His cord was wrapped around his neck, (nothing new, this happened for some of my other children, one son it was four times around his neck. The only difference with Nathan his cord was in a knot, the midwife made a point of showing me this, once again I was amazed that the cord was long enough to do all these things and not kill the child, others are not so fortunate. I am not sure if a knot in the cord can cause problems but it is something to look at.)

As I held him that first night. I had decided to stay. It was cold outside, very cold, and I was asked by the pediatrician to stay, so I did. I mentioned the leg being longer, but he didn't notice it. Sigh, it would be two years until I found out that my son had hemihypertrophy. I believed he was okay, nothing was wrong, my life would go back to some semblance of normal with four other children and now this added blessing of our fifth child.

Life did go into some semblance of normal. Our son is beautiful to look at, he seems bright. We just don't know what the future holds for him. It is such the unknown journey filled with doctor appointments and wondering. My Orthopedic doctor told me not to read about this disease because it would drive me crazy. He was correct, but so is the not knowing what to do. I am so glad this is my 5th and not my first child. I am relaxing and just enjoying the time he is little.

Being relaxed with Nathan, I didn't bring him to every baby appointment, measuring etc. I wish I had now, or maybe I did, I do need to read his charts one day. When did I and when did I wait for his shots. Why did it take until his 2nd birthday to get the diagnosis. I know he was there when he could walk. I know I mentioned the one leg being longer to both pediatricians and I was the one who pointed it out at the 2 year check up. It wouldn't of made a difference, his sonogram is normal. Everything checks out. Except he doesn't talk.

(yeesh, I can't find your newborn photos, somehow your 2nd cousin got thrown in with yours.)