Tuesday, February 25, 2014

Two sided truths

Ugly isnt pretty. Which is why when you take a selfie its always one in which you consider yourself "looking pretty." Its why tagged pictures become untagged pictures quite quickly.The problem is both our truths. That selfie, hey we looked pretty (and we did) that tagged picture....well that day we looked....we will just say not so pretty...but they are both truths. we looked both ways. Its why we clean up our house from top to bottom right before a friend comes over. Its why we wear makeup, do our hair, pin 100 pins of different haircuts.....cause ugly just aint pretty. 


Sometimes special needs world is so two sided. Like crazy bipolar two-sided. Like jump the grand canyon in 60 seconds two sided. 

We like to blog the pretty side. The my kids a hero. My kid works hard. My kid is amazing. Look at what my kid did side. Cause well the ugly isnt pretty and who wants to show the ugly side when the pretty is just so doggone pretty.

I'm gonna step way out of my comfort zone with this post and show you the 2 sides. I know not every parent  of a special need child feels these. I know these wont apply to plenty of families. But this is my two sides. This is my pretty and my ugly.

The Pretty
1. I am amazingly proud of my son when I see him do something for himself and become independent in an activity. I can struggle watching him try so hard but in the end it is a beautiful thing.

The Ugly
1.  Sometimes I just dont care about independence. Sometimes I just want to pick him up. Do it for him. Let it (whatever it may be at the time) be done and over. and not for his good. but for mine. So my life can just move on and we dont have to wait another 10 minutes for the dreaded braces to be put on or the shirt to be buttoned.

The Pretty
2. When he is at a friends house or an activity I miss him fiercely and our family feels very incomplete.

The Ugly
2. When he is at a friends house or activity I realize how much easier it is to go places without a wheelchair and stuff. I can easily feel so overwhelmed with how hard it really is with a handicapped child. How what seems normal really is stinking hard. Then I can be overwhelmed with guilt at those thoughts.

The Pretty
3. I just want the world to give him a break and be willing to help him out. Teachers to show some special treatment. Move to the front of the line. Park close. Let characters at Disney world (not that weve been but if we had) show him some extra love.

The Ugly
3. I just want the world to treat him normal and see the other 4 beautiful children around him. I want them to take my other children's hands and show them attention and love and make sure they know they are just as special. That there is no difference

The Pretty 
4. I am thankful for this amazing gift that God has given us. That we have seen more grace, love, hope and faith through this child then I ever thought possible. I would never change anything about the journey.

The Ugly
4. I wish it were different

The Pretty
5. I am patient and understanding with him.

The Ugly.
5. I am short tempered and frustrated with things I know he cant help.

The Pretty
6. His disability has helped shape our family into what we are today. It has given his siblings a compassion and spirit of serving that I would never have been able to teach them on my own.

The Ugly
6. His disability can turn our family from stable to roller coaster in 60 seconds. Our children can be slammed with fear over puke. Our children understand that at any moment we could be in the hospital and they are tossed to and from other homes while we pour our time into one child. (thats hard people) We try to explain and compensate but really...right now...there just doesnt seem to be a way.

The Pretty
7. His disability affects his ability to walk and run.

The Ugly
7. His disability affects so much  more than you can see. It is much more than just his physical life affected. And I never want to admit that. It scares me more than wheelchairs.

The Pretty
8. He gets invited places and is involved in other kids lives due to loving friends.

The Ugly
8. I am always afraid he will not be included, not be invited, not be able to keep up because of his disability.

The Pretty
9. This is just our new normal. We do what we do and its no big deal. He is who he is, wheelchair and all.

The Ugly
9. I still cry.

The Pretty
10. I push for strength. We do therapy 5xs a week and constantly make him do more and try harder.Its worth it.

The Ugly
10. I continually struggle with fear that I'm pushing too much, too hard and that there is no way I can understand how he feels. Sometimes I want to give up, give him his wheelchair completely and just say, "Please, just be happy. Please."

The Pretty
11. Over time I've developed thick skin for words and stares about him.

The Ugly
11. Sometimes words and stares break me and a trip to Target can make me nervous beyond belief. All it takes is a couple stares, ugly comments, rude kids and the next 10 trips are terrifying.

The Pretty
12. Our family outings looks a lot like yours.

The Ugly
12. I wish our family outings looked a lot more like yours.

The Pretty
13. I'm so thankful for the wheelchair and how happy he is in it.

The Ugly
13. If I have to get that wheelchair out of my SUV one more time I might just chop my arms off so I am no longer able to. I hate it.

The Pretty
14. I'm confident in our Doctors and our choices of treatment.

The Ugly
14. It feels like there is no one you can trust. You are the one making decisions on ER visits, CT scans, surgeries and that burden is enough to crush you. The weight of his health is on your shoulders and that is something I never understood about special needs parenting.

The Pretty
15 I am upfront with our struggles, honest and transparent.

The Ugly
15. I hide a whole lot. There are parts that you will never know about our life and things we do that you wont understand. You think you know what it consists of. You think you understand our day to day. But really you dont.

So you see....The problem is. Both sides are TRUTH. There's just two sides. And yes someone pointed out recently. Blogs are weird. Its a journal but everyone reads it. Weird...creepy....But yet I think there is good.  I know that sometimes my feelings feel very alone. very isolating. if maybe one other moms knows hey its okay. there are two sides and sometimes there are people out there that get both sides. Or if one person says to me, hey I get number 14..There's community in that. There is rest in that. And at this point with the roller coaster, bipolar, jump the grand canyon life that we live...Ill take some of that rest.



2 comments:

Holli said...

Thank you for saying the things/feelings no one wants to admit. Its hard. We ARE grateful for sooooo much, but feel soooooo guilty for feeling the "normal" stuff too.

smargle said...

This is SO true.. thanks for these observations