Thursday, November 11, 2010

Seth the Shredder

So Seth is the shredder. Nothing to do with all of Ahren's issues. I guess I should have said that right out. It is only with finger foods. He chews and swallows fine. It's only when he has food in his hands that the shredding ensues. He doesn't even know he does it. I think it is a tactile sensory issue fueled by anxiety. By now, it is a habit, one he is not aware of at all.

Yesterday was the big day for us to meet with the top specialist in the nation in neuro-muscular issues. My thoughts were all over the place. Mainly, I thought that they would laugh in my face and tell me I was a 'Crazy Mama' and to take my totally normal child home. Part of me wished for that. And part of me wished that they would HEAR me, and SEE what I saw. Something was not right. My gut kept telling me so. Oh how I wished it was not right. I wanted so badly for me to be an overprotective mother, seeking reassurance and that was all. I wanted to hear, 'Lady, you are crazy!'. But I didn't.

The exam took over an hour. the doctors, several of them, were extremely thorough. test this, test that, look at this, look at that. I was very impressed. They did not hurry in any way. Ahren was their total focus. As i watched, he failed one test after another. Walk a straight line? He fell over. Touch my nose? He missed. Pull this? He couldn't. My heart broke and yet I was so glad they saw what I see.

The results of the exam. He is in big trouble. I was not wrong. All of the top choices they have for what is wrong are awful and terminal. Testing is underway. My dear hubby keeps reminding me not to get upset yet. We don't know. Aw heck. I passed upset a while ago. Now I am numb. These are horrific, degenerative, terminal diseases. And this is my baby. My sweet curly haired, snuggle bunny baby.

If you want to find me, look under the covers and the pillows because right now, I am hiding. Holding my sweet boy every second I can get. Smelling in his sweet smell and feeling his soft skin. Evil stay away. His Mama's love surrounds him. My sweet precious baby boy. I love you more than anything.

20 comments:

Deb said...

Oh wendy, I don't even know what to say. I never expected that you would hear this information, I am joining you under the covers. I will be praying for Ahren's healing, doctors to have hope.

Many hugs to you,
Deb

Kathy said...

Sending prayers for quick answers, so you have less time to worry about the 'what ifs'. And solutions that, as Deb just said, lead to Ahren's healing.

Mamita J said...

Oh Wendy...I'm in tears over your little guy. Praying that you find answers. May God hold you tight and give you peace as you walk this journey.

Love,
Julie

Angie said...

So so sorry for this devastating news. Prayers for your family. Keep us posted please as soon as you get some results. My mind is racing wondering what the top of the list consists of....

Phyllis said...

Praying that the results are not the awful and terminal possibilities. Please keep us updated and you'll be in my thoughts and prayers.
Phyllis

Reba said...

I too will be praying for quick answers and wisdom from doctors to know the best way to help Ahren. And praying for a cure for whatever it is!

Kim said...

I can't imagine - prayers for you guys!

Sarah said...

Wendy, you and your baby boy are in my prayers. I pray that the doctors can bring complete healing for your beautiful Ahren. I would be under the covers too... big huge hugs!

Essie the Accidental Mommy said...

Oh no, I hope he is okay. Keep us updated.

Anonymous said...

Dear Wendy,
I have been following your blog for a long time and have commented a few times before.
I think that you are a Amazing, Couragous, honest person that anyone would be proud to call a friend and you will make it through as you have done so before.
This isn't the first time you have felt darkness.
I truly hope that Ahern's problems arn't as bad as they seem and that the Sun Shine brightly in your lifes just like Ahern and the rest of your family already do.
Remember
'IF IT WASN'T FOR THE DARKNESS YOU WOULD NEVER SEE THE STARS'
Regardless of the outcome I know you will look at Ahern and see the GLASS AS HALF FULL, NOT HALF EMPTY because he is at home with you,
HIS FOREVER MUMMY.
Kind Regards
Love
Jo from South Australia

Ellie said...

um... ya, I am going to call you today... I luv you!


Hugs

Ellie said...
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Ellie said...
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Anonymous said...

Wendy,
I have been reading your blog for a few years now after stumbling across it via another Guatemala adoption blog. This news breaks my heart. You constantly amaze me with your strength and your dedication to your children. Honestly I only have one child and I don't know how you do it sometimes. I am certain that you and Ahren were put together for a reason. He needed an amazing mommy who will fight to get answers for him and love him with everything she has. That gorgeous little boy deserves nothing less. I will pray that his diagnosis is manageable and not terminal. Please keep us updated.

Pam L said...

Praying for strength for you Wendy, for healing for Ahren and for peace for your entire family.
Please keep us posted

URBAN BLONDE said...

So sorry to hear this news. I hope you get a definitive answer and plan of action quickly so you can get out of the what if's and deal with the what is. Still hard.......

Hugs and prayers to all,

xxxx

Julie said...

Leaving Lurkdom to tell you that I'm didn't expect you to have to endure such devastating news. I will pray for everyone to have strength and hope as you continue on this journey.

Heidi said...

I have been following your blog for a long time too- before Ahren even came home. I'll be praying for you during the testing time- not knowing is the worst. And I'm with Deb- I'll be praying for healing. God can do anything!

Diana said...

Oh, Wendy! I'm crying right along with you. I just doesn't seem fair! We wait and wait and wait for so long to love our kids only to find out the journey is very different than we anticipated.

Hugs to you my sweet friend, and prayers for peace and healing as well.

whtmtnmom said...

Wendy- my heart is breaking for you and your sweet Ahren that you have to even think about a frightening diagnosis. I love your plan of living to the fullest while you await the results from the drs. Get into that shaving cream on the dining room table and feel the squish between your fingers. And then ice cream for b-fast. Best way to pass the agonizing days of waiting to hear something potentially scary. I will be thinking 'bout you & your family. ((Hugs))- Lisen