Monday, May 7, 2012

Lucky For Me

I am lucky that no one really reads this blog like they use to because this is not going to make anyone feel warm and fuzzy. But, right now I don’t feel all warm and fuzzy either.

When Ty graduated from preschool we were ready to send him into kindergarten. We had hoped he would mainstream ( mainstream = regular school with accommodations at the school that he is closest too) but it was suggested that he go to a smaller kindergarten with a few kids and have curriculum that would make it easier for him to mainstream ( see above) for first grade. As we prepared to send him to a smaller kindergarten we also found it was in a different school. Our local school is about 2 minutes away. Ty was bused to another school about 25 minutes away.

When he had his seizure in December he missed a lot of school. He also started his behaviors and now we a have landed a nice little spot in summer school because he didn't reach all his goals. It also has landed us in a land of unknown. Ty is like a little boy with out a home.
The district wants to send him to “Life skills.” We wanted to him to go where we were told he would go. Back to school where he continues to learn. Not to a class where he would just be baby sat. He is a smart boy. He may be slow and there are things he will never understand, but those things he won’t understand are not academic.

Ty has his IEP on Wednesday where I feel like my poor baby will not get what he needs or deserves. I have a list of things I want for him and a list of things I wish I could have for him. He learns. He LOVES school. He loves letters and he especially loves to read.
As Ty’s parents we love him so much. We accept his limitations and understand that we have to do things the way we need to in order for him to be who he is. He is one that will reach the moon. Even when he has to use a stool to get there, the moon and the stars and every mystery planet is his.

We know his limits. It makes it so that we have to make choices and decisions that others don’t understand unless they stand in our shoes for a little bit. There are days that are so hard that I can’t help but have tears come to my eyes for wishing it was just a LITTLE easier for him. It makes me angry at myself for feeling sorry for the things I have to do.
I get frustrated he can’t play with other kids. I get frustrated that his poor body just CAN’T feel that he has to go to the bathroom. I get sad when we have to leave places like church because after trying so hard on Saturday to let him be a little boy and play baseball that he just can’t handle the over load. I hate being judged when I don’t have anyone knocking on my door asking questions. I can’t help but have a heavy heart when my sweet, sweet spirit has never been invited to a birthday party because he doesn’t know anyone in the neighborhood because he doesn’t go to school with them, but also because he can’t do the things they do, so they don’t want him there. I get sad that even though Heavenly Father knows all these things that my momma heart is broken. When he doesn’t fit in, even in a special needs world, that I can’t shelter him any more. I can’t shelter him from Aunts that won’t baby sit. I can’t shelter him from family who won’t come watch him play baseball. I can’t shelter him from the stares at the grocery stores. I can’t shelter him from family who won’t invite him to friend birthday parties because he is different. I can’t do all those things that will help him be even closer to the moon. I can only wish the moon was closer.

So many tears have fallen the last few days. With a sick baby Grayson and his long hours of nursing and sadness and the nights of carrying my sweet baby Tyler to bed when his poor body doesn’t bend and the broken pieces of my mommy heart. I am truly humbled, that I was entrusted 2 times, with 2 sweet little boys. Two times Heavenly Father didn’t forget me.  With multiple times in a day He knows that I am not perfect He has remembered.
As the tears fall again tonight, forget me not is all I can ask.  And then, as I wish for the moon to be closer and easier for Tyler to touch and stroke the face of my sick baby, I remember that He loves them, even more than He loves me. He has an infinite love for all of us.

He will let the moon be closer..........

"And I know something else: as an Apostle of our Master, Jesus Christ, I proclaim with all the certainty and conviction of my heart—neither are you!
Sisters, wherever you are, whatever your circumstances may be, you are not forgotten. No matter how dark your days may seem, no matter how insignificant you may feel, no matter how overshadowed you think you may be, your Heavenly Father has not forgotten you. In fact, He loves you with an infinite love.”


Wendy Danielson said...

Nancy my heart is just breaking with the emotions you're feeling. I wish I could bring Ty's moon closer and make the district see they are wrong...that just because parts of his body and eyes dont work right doesn't mean his brain doesn't. Keep fighting. Get an advocate from the Utah Parent Center. I have friends who can help. You're not in this alone. May I give them your contact info?

angel shrout said...

Sweetie YOU can and will be the strong momma and pull that card to get him closer to the moon. I am sorry your neighbors and the other kids are so closed minded. If you lived near me my kids would welcome you all with open arms. We would party hard just so Ty could have a party...

Jenn said...

Hugs.. Although I don't fully understand how you're feeling, I do get it. You are one of the hardest working mothers I know and I am so sad that this is happening. I wish there was something I could do to ease this pain for you. I have known you for a long time. You helped me enter the world of special needs with ease. I think your amazing and I think Ty is lucky to have you and D as his parents.

CJ said...

I, for one, am still reading. And my heart breaks right along with you. Our children's limitations are harder to deal with than our own.

Madeleine said...

Nancy as I read your words my heart was breaking more and more. Although we face different challenges with our boys so much hit close to home. The stares, the kids saying you are weird, people belittling what you go through. Your kid not being able to keep up b/c his legs hurt. I pray every day for strength b/c it's a daily battle of feeling I am failing him. His autism has been life changing. Spencer breaks my heart yet he is my heart.
You are awesome and an inspiration to me always.
Tyler is so lucky to have you.

Kimberly Bureau said...

I still read we love you Nancy I wish you were closer to us.

Chantel said...

My heart breaks for you too. Watching Ty on Saturday, really humbled me. He is AMAZING (I know you know that) SO funny and such a sweet boy. You guys are amazing parents and do such great things for Tyler. When he said to Pogi "hello Pogi, I am Tyler, can we be friends?" My heart almost bust!! We all could use a little more of his kindness in the world! Thanks for sharing your sweet little boy with us!

Mrs. Labrum said...

I had so much fun with Tyler the past ew weeks. I know it is difficult, but you are doing a great job. Tyler will learn everything he needs to learn. And others will learn that he is a great kid. We are all learning great lessons through him. He has grown so much the past few years. He is so funny and we love him so much.

Mrs. Labrum said...

And I don't know why that didn't sign in as Grandma Labrum !