Wednesday, May 8, 2013

The things I wish.......

Sometimes I lie awake and think of all the things I wish I had. I wish of the things I could do. The things I would change, fix, redo, do over, you name it. I wish and dream and dream and wish. In the last few weeks there has been LOTS of things in my own personal life that I wish others would understand, or WISH I could explain, WISH I could understand where it is going to lead us. But that answer has yet to  come.


2 blog posts floating around the small world of Special needs moms have been shared and even more shared and I thought I would take a few points and some of them overlap so it might not be exactly the same. And explain each one, and how they belong in my world.

The first article was written a while back and I have kept looking back at it so many times. The other one I am referencing is one that just started circulating.

*And if you finish this post and since it is Mother’s day, we are doing a giveaway from a awesome friend of mine. So PLEASE read and take the time to comment so that we can have an awesome give away!*


I am tired: Even with a goods night sleep and a nap ( Because I have taken and do take naps still when Grayson goes down. I am SURE it is considered lazy and well good for me!) There is something emotionally and physically draining of more than just being their mom. There is always a way more emotional side to parenting Tyler than what I see in parenting Grayson. Their needs are so different, and not just because of age. But because it IS harder. I am doing things for Tyler that I don’t need to do for Grayson because even as a small toddler he has mastered skills that through YEARS of therapy we haven’t mastered or even come close to mastering. It is exhausting.
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I am lonely: The visions of play dates and play groups and friends slowly go away after a few years. In the beginning he was like a typical kid. He was little, cute and fun. When emerging skills came for kids, like walking, we were crawling slowly. When it came time for him to go to nursery in our church, he was not able to go because everyone was walking and he was crawling and his walker was “to combersome” in a room of 20 toddlers. It was devastating. People soon stopped calling to have play dates. Then when they were old enough to make their own play dates he never was invited over to play because he was different. So I because my own child's best friend. I miss having friends that were interested in what I do and not interested that as a whole, we can’t do what you all want to do. There is no way to explain to a regular mom, what all day at the hospital is like for 9 appointments to hear that in ten years he will at some point stop walking. Or that he will never talk. The “nevers" go on forever. One article said it was “ like the hoovering point you get with your toddler times that by one more NOT a toddler.” It is like that all the time. Like I said above, Grayson has out mastered several things that Ty isn’t even close. But no worries, he doesn’t get invited to Bday parties, play dates or even to be played with at the playground.

 I have to work harder at my marriage: The divorce rate for a family where there is special needs is 80%. The average American divorce rate is about 50%. Putting the extra effort to make our marriage work has been VERY hard. When we lived in Utah, finding a sitter to take on Extra needs is almost zilch. You can’t ask your parents every week and let’s face it. It takes a lot of work. It takes a lot of work without extra needs. Add the extra needs and it is hard. One of the only things keeping us old folks in love, is that we moved away from our home of Utah, and moved to Arizona where we were given long term care services for our children. Respite is a GOD SEND.

I wish you would stop saying retarded, short bus, and learn to use the handicapped parking spots like adults: You know the saying that you are the only one that can say stuff about our family. That is how I feel about people who make short bus jokes. When you put your kid on one, then you can joke about it. When you are making fun of someone who “should” ride one, you are calling them dumb and handicapped and retarded. To those of us who lovingly send off our babies on a short bus, it hurts our feelings when we hear short bus jokes. Saying the word retard, makes me want to throw a really large thesaurus at your face.

BUT the biggest, when you are dropping off your kids at school, the reason the handicapped parking is RIGHT IN FRONT is because there are people WITH HANDICAPPED STICKERS that need to park there. Don’t park there. It is illegal. Store. Same concept. You might find your small run to the store cost you 350 bucks because some mean head will park behind you and call the police. It is RUDE and terrible to make someone who CAN”T do something have to suffer because you can’t park someplace else.


I want to talk about my child: I can’t even begin to tell you all of the wonderful qualities that my child has. He is smart, funny, insanely honest, sweet, kind, forgiving, understanding, determined, stubborn, messy, crazy, a crappy sleeper, a mean little dude, stubborn, and did I mention stubborn. But there are also things that people see on the outside. they want to know why he walks funny ( he has cerebral palsy) He hates hair cuts because he has had 7 surgeries on his brain and it feels funny. He falls a lot, because he has cerebral palsy. Loud noisy places cause him to have meltdowns because he has sensory processing issues. He has behaviors that are not age appropriate because he is developmentally delayed. He is legally blind. We love him. We do all of those things and let people stare because we are who we are. 
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I am human: I am human. I have moments when all of the above issues make me sad. It makes me want to stay in bed all the time. I enjoy my naps and times that I don’t have to deal with being the mom to the issues but long for the times that I get to be the mom of the boy that is all the amazing things. There are so many times that I am DOWN DOWN DOWN and after a little bit, we figure things out and we are doing the best that we can and we go up and keep on going.  We are human. We fail. We thrive, we survive. It is a lot of work to get up in the morning, but we do it. We all go through it. 
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There are so many more things I wish people knew about me. That I wish they knew about Tyler. That Wish they knew about Grayson. And how they interact together. That they could see the funny things that Tyler says and does. We love Tyler with all our hearts. Our hearts ache that he has such a trial to bear and we hope and pray that we can do all we have been entrusted to do. 


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And for the best part. My good friend Amy from Stiched by Starlight makes custom orders for purses and bags. They are darling, cute and functional. She is offering a bag to a reader with custom fabric of their choice. She is offering a phoebe bag or penny purse.

To enter into the contest please leave a comment on THIS POST. You also need to go visit Amy at Stitched by Starlight and like her page and take a look around. There are many different fabrics that you can choose from. Let us know what you would do with one of the bags listed.

Most importantly, thanks for sticking by us. 1000 posts on here and 8 years of Tyler and I and our antics is a long time. Thanks for sticking around.

23 comments:

Jenn said...

Amen and Amen... I would love to win a new purse!

Michelle Gifford said...

You are truly amazing and so are your little boys. And a new wallet would be wonderful! Thanks for sharing your life with us.

Kimberly B. said...

Nancy we love you guys<3 You are an amazing Mommy and friend.

JoDee said...

You do such an amazing job with your boys! They are adorable.
I love the looks of the Phoebe bag it would be so nice to have a new bag and I love hand made ones.

Becca said...

Great post! I think I would like the Phoebe bag as well. I love purses. I hope I win. :)

Lauriann Easton said...
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Lauriann Easton said...
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Lauriann Easton said...

Nancy you took the words right out of mouth on wishing . Great Post ! Tyler and Grayson are so cute !!! :) You are such a great friend thanks for sharing your life and fun adventures with your family. :)

elissa said...

I would invite you over for a play date! After we put our special boys on the short bus we could even go for coffee. :)
and oh my cuteness on the bags! I'll take either one :) (and I liked you as my facebook page - don't let life pass you by)

Grandma Labrum said...

I'm Mom and Grandma and no one loves any of you more than I do. And I don't even need a purse or bag...you know how I go purse shopping!

ladydragon488 said...

Nancy, no matter how hard of time you may have with Ty, Grayson or both I know you would do anything for them, despite some of the things you express. We are human and we are moms, and You are a Mom of 2 great kids. Now that we are more settled I would love to get some play dates going and actually get to know your kids better. BTW I like the phoebe bag;)

amber said...

Great post! Thank you for sharing your journey!

MELANIE said...

Grayson and Tyler are such beautiful boys inside and out. It's obvious they have an amazing Mommy too! The Phoebe bag is gorgeous and I can never have too many purses. ;-)

Gail Marino said...

Enjoyed reading through some of your posts. I greatly admire your strength. Thank you so much for sharing.

ChelleBell said...

I found your page for Amys post on Stitched by Starlight. She does beautiful work. I feel blessed to read your blog, truly inspiring.
Bless you and your family.

HollySteffen said...

Nancy, you rock.

I've just spent a good deal of my afternoon perusing the stitched fb page. :) I LOVE the scalloped purse. I'm bummed that's not offered on the giveaway. I've love to represent her here on the East Coast. :)

I love this fabrichttps://www.facebook.com/photo.php?fbid=455063537895749&set=a.396156507119786.86994.275105165891588&type=3&theater

I would def have to use it as an everything bag. diapers, wipes, water bottle, wallet, etc :) :)

Stephanie Coon said...

I think the only sad part here is that we all have those days. We all have times that we want a "do over"; for me it doesn't always feel fair. I try so hard to not think of Tegan being disabled because of friends like you and Kim and knowing how much harder you both have it than me. Regardless, it is comforting to me to know that I can vent sometimes about him and you guys understand. Love ya! P.S we are just too awesome :)

Ryan said...

I was already a fan of her page and her very cute stuff. She sent me to you, to read about your very touching life. Thank you! Rylie Origon

April said...

I love your blog Nancy and I love you <3

mom4jules said...

This hit home for me. Love u friend, you are doing a good job! Hugs

Brit Miller

Tammy said...

WOW, you have lots of comments on here. I am impressed :)

Ashley Marie said...
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Ashley Marie said...

My sister, too is the parent of a special needs child. I see the struggles she goes through and it definitely takes a very strong person to do what you both do! The penny purse is adorable! I need a new purse badly :)