Parent Conference

I signed up to go to a Parent Conference next month.  As I was looking at the different topics, I picked the one for GT kids.  I have spent so many, many years going to conferences on special needs, it’s funny to go for something else. 

It’s like as parents we get grouped as our kids.  If I have a child with special needs, then I must be different or not a whole parent.  It’s like I couldn’t possibly understand what regular kids go though.  I actually had someone tell me that once.  I didn’t know because my child had Down syndrome.  So no I get to go and sit in with that other group.  Does it change who I am?  Or just how I am perceived?

And maybe it’s all in my head.  Maybe when I say oh that reminds me of Avery, people don’t look at me like, oh it couldn’t my child isn’t disabled.  Because my kids are so much more than ID or GT.  They are smart, funny, quirky, kind, loving, dingy, and sometimes rude.  They are these complex, unique individuals that make my heart beat. 

So after all the hours and hours of parenting classes I sat through when Avery was little I am excited to sit through one more.  I know it sounds silly but I get to just be a regular mom now. 

My perspective is so different now.  I used to spend so much time trying to learn how to be the best mom, how to help my child the most.  Now I have confidence as a mom and am excited to just learn something different.  The steaks don’t seem as high this time.  I’m not terrified, like I was when Avery was little.  I was so afraid I would do something wrong and it would be my fault he didn’t develop like he was supposed to.  Now I know, I will do things wrong but somehow we will all get through it.  And with the Grace of God and a lot of love they will be ok.

Great Blog Posts

I have all these great things to write when I am not near my computer.  I have nothing when I am here.  Well, that isn’t exactly true, I have things I shouldn’t say. 

The New Razor

Avery got a new electric razor for his birthday.  He had been wanting one like his dad’s.  So a couple days ago I noticed that his arms were hairless! 

Yep he shaved them.  Why?  That is what I asked him. Evidently, a boy at lunch told him it was cool.  Yes we laughed, a lot. lol

October is National Down Syndrome Month

I never wanted this blog to be ‘about’ Down syndrome.  There have been times during the past 19 years that Down syndrome has consumed us and other times we hardly think about it.  I haven’t wanted the fact that I have a child with Down syndrome to define who I am.  I guess the reality is that it does, as much as all the other things in my life do. 

I am a wife, a mother, a sister and each of these things has made me who I am.  There was a time I didn’t know if I should tell people that my son has Down syndrome. It felt like I was keeping something secret or that it was something I was ashamed of.  But it is part of who he is and I am very proud of my son.  So I talk about it, because it’s ok. 

Avery, you are an amazing young man. I am so very blessed to get to be your mom.  Watching you grow up has been the delight of my life.  I can’t wait to see all the other amazing things you will do one day.

What would have been

We were all in the car and listening to Avery talk about something.  I said to Mike, “I wonder what he would have been if he didn’t have down syndrome?,  He is so outgoing and such a people person. I bet he would have been a politician.”  Mike asked me if I thought he was so uninhibited because of the downs.  I think he is in spite of it.  Not all kids with downs are as outgoing as he is.  Mike told me that he didn’t think Avery’s down syndrome had hurt our life.  “No” I said, “but it’s hurt his.” 

And that is the part that beaks my heart as a mom.  Yes he can do so very much.  But there is so much that he wants that he has to struggle for and much he won’t be able to do.  And for a moment in time I saw his future if he had it all.  And that picture is just too painful.

I don’t want sympathy, or a pep talk.  I know how very lucky my son is and I know he will get to do and be so very much.  But for that moment I gave in and let myself hurt for him. 

And I guess the funniest thing is he never hurts for himself.  If there is something he wants to do and he can’t, for whatever reason, he is happy doing something else.  So maybe, just maybe there is so very much to be learned. 

I miss my dad

I can't stop thinking about him. Loosing my mom was so tragic to me. She was so young and I knew how much of my life she was going to miss.  My journey with my dad was so different. We didn't always get along, we had a lot of growing pains along the way. But he was the constant in my life, he was my encouragement and my support. He always made me laugh and always told me how proud he was of me. I am not sure how I will go the rest of my life without him. There is such a hole in my heart. 

I make the phone calls

Why? You ask.  Because my husband doesn't.