Friday, March 23, 2012

Special Needs Roller Coaster

Many of my readers have been asking if I have been okay because I have not been blogging lately. I have been just plain and simple-exhausted. I need a nap during the day. I have actually been taking naps when I have a chance to after my daycare girl goes home some! Which actually isn't often enough. I fall asleep in the car when my beloved is driving us to places. I just can't help it. I need a vacation-to sleep. Even Little Man cried yesterday. He was so tired of having to go someplace and we had two appointments that ended up with us being gone all day from 10-4. It wasn't suppose to be an all day thing! He just wanted to stay home and do school and play. This was a first for him to break down like this.

 We have been so busy with appointments. I am on burn out with therapy and Dr. appointments. On top of all that trying to squeeze in schooling. Which I have been doing since that is a priority to school my kids. Homeschooling a special needs kiddo has its moments also. There are days I get frustrated because I have to adapt everything. A simple task can take so long. The meltdowns get exhausting. Then just when I think one area of Bug's health is doing good and under control....it spins out of control. The roller coaster goes faster.

We went to Bug's eye appointment yesterday. I thought it would be a basic 6 month follow-up. I was relieved one appointment that I didn't have to go to every 3 months or bi-weekly! Her eyes have been doing good-right. Then I kinda noticed something here and there that I associated with her being tired from our busy schedule. Even her OT just happened to mention it on Monday about her eyes.

Bug's left eye has taken a drastic turn for the worst. Her left eye has always been the worst of the two. The Dr. was just shocked at how much it changed in 6 months. He told me that we need to do a new prescription for her eyes. He just wants to look into a few things first concerning her eye. Since it was such a drastic change he wanted sit down and go through all the medical records I have given him concerning her eyes and some other medical records. He is not sure what is causing such a drastic change. He didn't give me any indication if he had a suspension of the reason of the vision change. Now, we just wait until he calls back so we can go back to the office. More waiting, more not knowing.

Does it ever end. I am tired of the roller coaster of emotions. I am tired of all the appointments and therapy. I am tired of all the different opinions of the specialist debating of her health issues. I am tired of medications. I am tired of not knowing. I am tired of waiting for answers. I am tired of well meaning people thinking that Bug is okay because she looks normal-she is just kinda of odd. I am tired of well meaning people saying things that they don't understand of her level of functioning. My beloved and I live with her and see her everyday we know what she can do and what her mentality level is. I am tired of feeling like I am being looked down on because of the way I have to entertain her when I need to get something done. (Which is having her watch a movie or lately the iPad). I can honestly not get anything done around the house with out her having a meltdown or causing drama with her brother-like hitting and trowing things at him. I am tired of kids being mean to her and making fun of her. I am tired of kids making my son cry because they are cruel to her. I am tired and just need to vent and maybe shed a few tears.

Even though I am overly tired and stressed lately. I can honestly say that I have a peace that passes all understanding. I am reminded of Philippians 4:7 "And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus." I don't know how those who have special needs kids who don't have a personal relationship with the Lord maintain sanity. I know that the Lord doesn't give us more than we can handle. He is in control and not me. That takes off some of the stress just knowing that. Why the picture of the peacock? Just because I felt like it. The peacock just made me smile and I needed that just now.
Then I look into my daughter's face and hold her tight and I know that it is going to be all right. It doesn't matter what others think. He knows all that is going on with her health. He knows every inch of His creation. God gave us her and I am so thankful for my baby.
I just need some rest and some time on my knees. This roller coaster has to stop at some point-right? May the Lord bless you and keep you. Have a blessed day.

1 comment:

  1. I hear you! We drive an hour to speech- each way, twice a week! Today I was just so tired and wondered if it was worth the expense and wear on our car. I needed to remind myself that at least we are not in OT, VT, and regular therapy anymore. I also needed to remind myself how lucky I am to stay home and be able to take her to all these appointments and she isn't just stuck getting what she can through school, and having all the added stress of a full day of school. Thanks for your post! I needed it!

    ReplyDelete

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