Saturday, April 23, 2011

Post 999......

  I can't believe I am about to post my 1000 blog post. How can I have that much to say????? Oh well, it might not have been riveting, but it was real, and honest and totally true. This is the legacy for my kids. My feelings, the events, the struggles, the joys. All of it, in realistic black and white. I can never convey how much I love these kids. That is not possible. No way. No words describe that kind of love. Fierce and protective, total and complete, deep and encompassing. I really have no words that fit.

  Ahren.......Genetic testing results. I had high hopes for this set of testing. I wanted so badly for an answer. Some direction for us to go. Unfortunately, the genetic testing only covers 126 known mutations. It does not look for insertions, deletions, or duplications. It leaves a huge amount of genetic errors out. Ahren tested normal for the known mutations. We already knew that he did not fit into any known category. This just confirmed that.

  Several times recently people who do not know us well have commented that he seems totally normal. They look at me as if I am TRYING to find something wrong with him. Like I am a monster who needs the attention a sick child would bring. It hurts me so much. You have no idea.

  If they lived with him, they would see him fall many times a day, hurt himself and struggle with normal activities. They would see that his speech is worse than before. That he won't try and eat anything that requires chewing. That he cannot do what he did 6 months ago, he cannot keep up, he cannot participate.

  He has no reflexes below his hips. None. They pound and pound and no response. He drools, he struggles, he tries so hard. He looks so happy and normal, but he is not. It just keeps getting worse. My heart aches to help him, to protect him, to make him complete. I love him so very much. He is not normal, no matter how he appears. Do not expect him to be normal. He just can't. My sweet boy......

7 comments:

ManyBlessings said...

Shoot. :( I was SO hoping you would finally find answers. Rats.

Mamita J said...

Oh Wendy...I'm sorry you still don't know. It is frightening for a mom. Terrifying, really. Praying for answers somewhere. And praying for your little guy.

Essie the Accidental Mommy said...

GAH! I was really hoping the testing would show something, so that something could be done. So, so sorry.

What jackass hinted that you might want to have something wrong with Ahren? I will take them on. Seriously. Didn't your older daughter have a severe, life altering medical problem that went undetected for years? Maybe you "just" refuse to accept the word no, and refuse to let your child whither without a huge massive fight. .

I'm very impressed though, about 1000 posts, sheesh! Although, I am at about 500, it sure doesn't feel like it!

Reba said...

I am so sorry. I really wanted some answers for you too. :( Have they tested for any mitochondrial disease? Do the doctors have any idea where to turn next? Hugs and prayers to you!

gail said...

I believe the unknown can sometimes be more frightening than the known. At least you have answers and a direction to go in. I am so sorry you still don't have those answers for sweet Ahren.

It is unreal how some people can dare to judge our lives and how we raise our children. Anyone who knows the real you would never dare say that.

You are an awesome mom and I come to your blog so many times for comfort in knowing I am not alone in this crazy world of adoption and the issues that come with it. You offer such wisdom and humor in situations that few people would dare live with nor understand. Thank You

Happy Easter!!

Joe Moleski, Master Black Belt Lean Sigma said...

Right there with you girl! Tessa has been through too many genetic tests to count and they never could come up with anything. Some days I'm grateful that they didn't find anything, because so many things that they could have found would be beyond devastating. Other days I just wish I knew. I have finally come to terms with never knowing, but I do often wonder how much more compassion we would receive if she didn't look so "normal" on the outside. I get WAY too many glares at Disney when we use our handicap pass to bypass the lines. If they only knew our daily struggle... Just reminds me not to judge... Still praying for your sweet boy!!!

Joe Moleski, Master Black Belt Lean Sigma said...

I left a comment, but I guess I am signed in with my hubby's account...sorry!!! - Amy Moleski (Tessa was born in Guatemala)