I Cried Today

At Avery’s ARD meeting.  I tried really hard not to, I even left to compose myself.  But I couldn’t stop it.  My heart hurt. 

We were talking about Avery working and whether or not he was competitively employable.  We were talking about him not being able to do his dream job at Brookshire’s right now.  And I have to ask myself if I have to come to terms with a different future than we’d hoped for him. 

I know there is still time and so much can happen.  I also know that it wasn’t long ago that we worried if he was going to live.  So I know all that and I hold on to it but yet I still cry. 

If you don’t have a child with a disability, you might think  you can understand.  You might think, it’s ok as long as he is happy.  But close your eyes for a second.  Ok close them after you read this.  But imagine your child and all the hopes and dreams you had for them when they were born.  Did any of them involve them sitting in a room folding paper when they grew up?  That the most people wanted to offer was a sheltered workshop? 

It hurts my heart to think of it.  But then I think of him, I think of Avery.  And I know, I know I want him to be happy.  I don’t want him stressed out and unhappy.  So I know that however that future unfolds, I will find joy in that.  I find joy in Avery and I will not cry for what he can’t have. 

But for some reason I just can’t stop crying right now.  I want to yell out to the world that it’s just so not fair to him and to me.  And yet I know how lucky and blessed we are and how blessed he is.  And I don’t want to know how much worse it could be. 

One reason I feel so bad crying in the ARD meeting, the main reason, is that I don’t want Avery to feel bad.  I don’t want him to think I’m crying because of him.  I don’t want him to ever think he is a disappointment or to feel bad.  I want him to know that I want the world for him and know that I know how amazing he is. 

So I dry my tears and will find a way to make my peace with whatever the future holds.  As we all do, with any child we have. 

Do you Pin?

I have spent many hours on pinterest finding all kinds of treasures.  All kinds of things I know I will make!  I have made exactly three.  One of them I pinned after I made it.  It was a Rum cake with chocolate chips.  The best cake ever!

The second thing I made was a breakfast casserole in a crock pot.  It was better than ok, and I’d make it again.  I think I put too many hash browns in it but that was my fault.  

The final thing I made was liquid soap.  The one where you shred three bars of Ivory soap and add water and melt.  She actually said to add H2O, so I went with distilled water.  I figured it would take the cost up a little more but we have a lot of salt in our water and I didn’t want to mess anything up, so I went ahead and spent the $1.79 for 2 gallons of distilled water.

This took me 2 days and 2 large pots.  You have to add like 12 cups of water then heat it all till the soap is dissolved, then let it sit over night to thicken up.  I will admit after I melted it all I didn’t think there was a chance in Hell that I would have anything but sudsy water the next day.  I was very surprised when I saw my soap and it was very thick.  I did have to divide it in half since I didn’t have a caldron to cook it in.  so I spent another evening adding water and melting my soap. 

The next morning it was supposed to be ready to go!  I had 2 large pots of phlegm on my stove the next day.   It smelled like soap, but wouldn’t bubble.  It was too watered down, but it wasn’t runny, it was like snot.  It was so gross.  I tried to use it but it grossed me out.  You couldn’t pour it.  I tried to use a funnel to pour it into a jug and it wouldn’t separate, it just oozed out.  So my husband took it out and filled a whole the dogs dug. 

I am happy to say the dogs have stopped digging in that spot!  The soap is still there though. 

Why did you eat that?

Saturday while Z and I were at a birthday party, Avery and Mike were cleaning out the truck.  Mike found Z’s lunchbox from Wednesday that he didn’t eat.  Avery got in trouble for eating his lunch and buying lunch that day, Zachery just didn’t eat. 

Mike told Avery to go throw it away and then Avery finishes cleaning out the truck.  He did a great job!  When we got home from the birthday party Mike asked Zach about his lunch and looks in the trash and there isn’t any sandwich there!  The turkey and mayo sandwich which had been in the heat in my truck for three days had been eaten, by Avery! 

He was supposed to go to the Joy Ministry Respite but I was afraid to send him, knowing he was going to be sick.  Mike told me to call the Dr and this just seemed so familiar, I know I’ve called because he’s eaten questionable food before.   That’s when I realized it was when he ate chicken strips that had sat in his lunch box at school for 4 days.

That made me feel sooooo much better!  So we sent him off to his party.  He had a great time and felt fine!  He has an iron stomach.

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.