Strength vs Will

"You are one of the strongest people I know."

I hear it a lot. I know others who hear it a lot.

I am not strong.

I am so weak.

At this time in my life, I can't even count how many times I have assumed the fetal position and cried for hours on end. Hundreds at least.

I can't tell you many times I have pasted a smile to my face and pretended that everything is ok. When ok is about the farthest thing away for me. Or us.

I can't tell you how many times I just want to sit on the couch and stare into space. And do nothing. Not even take care of my kids.

I live for days on end waiting for my oldest child to come out of a state of unawareness and show signs that he is among us again and aware of our love for him.

I often lose my patience when he cries non-stop for days. And I cannot fix it.

I can't tell you how often I have needed to step away from everything. Family, friends, work, life. Everything.


My strength is really weak. Emotionally I have had a really hard time for the last 7 months holding it all together. He was so so sick. You think you're prepared for something like that and the possibility that comes along with that. You will never be prepared. Not ever.


Physically-people see me as strong. I lift and carry this 70 pound child to and from the van multiple times a day. I've dropped him before. Twice actually. Trying to put him in the van. I cried both times. My back physically aches daily. I question how we will continue to do this.

While my strength is weak, my will is incredibly strong. I have a fire-driven will to move on.


I do cry. I cry so much. If you've seen me cry-----we must be close friends. Because I do try to hide that part of me.

I should not be ashamed that I cry when things are hard. Because I often find my tears are the fire to strengthen my will. My will that I will continue.

I do paste a smile on my face. I let people in on this blog. But rarely do you see that side of me in real life. Sometimes I'm embarrassed about the lack of control over my emotions. That fake smile gets me through a day of embarrassment. Because if I'm smiling, no one will ask me what's wrong.

I will try harder to stay real. Sometimes "fake it til you make it" is a necessary reality. But I am going to find the will to be honest with those who care about me.

My willingness to wait out so many days of David being locked away within himself or stop crying for days on end is so worth it. Because we get true happiness and a joyful soul from him. Sometimes he is almost on heightened awareness after being locked away for days. And we get amazing happiness from him.

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My strongest will comes from his strength. David is absolutely the strongest individual that I know.
He is physically strong. Freakishly strong. His strength and will have gotten him through multiple severe illnesses in his young life. He has figured out how to be mobile to the best of his capabilities despite the odds stacked against him in terms of muscle spasms and lack of body control.

He is the best possible David he can be when he feels the power to do so.

My life would be empty without his strength.

I am weak and he is strong. But he gives me my will. My purpose.

 

Seniors

Social media has been so much fun to watch this summer. Lots of family vacation pictures, ball pictures, pool pictures. So many special memories for families and individuals to treasure.

Some of my favorites? Seeing many friends post their kids' senior pictures. It's awesome to see what wonderful people some of these young men and women are growing into. So close to adulthood, yet still relying on mom and dad for a bit longer.

Did you know that technically David should be a senior this year? He should be a part of the class of 2018.

He's not. And that's quite alright. I've come to terms with that a long, long time ago. He will be listed this year at his school as a junior. We "retained" him a year in jr high. It was what was best for him. He will go to high school until he's 21. And we don't really know what his future will hold after that, and can only pray that there will be some kind of day program for adults that he can participate in.

We aren't looking at colleges. We aren't worried about SAT's or ACT's. We aren't out shooting his senior pictures.

What I am doing to prepare for his 18th birthday: Worrying

I don't sleep at night. So I research how to gain legal guardianship of an adult with disabilities. I research how to gain SSDI for him. I research local specialists in the area for his many symptoms of You-Hoover-Fong Syndrome. Because pediatrics is coming to an end for us. It's so scary and intimidating, and causes me more stress than I'd like to admit. Some might not understand this process. I don't understand this process. I want to understand it. I'm trying to understand it. But it's a lot to take in.

What I do know: I will never stop researching until I DO understand it.

I am tired. So tired. But trying to be informed is the way to do this. Next on my list is researching attorneys that handle this kind of thing. It makes me sick knowing that I have to pay someone to help me be able to make decisions in my mentally handicapped adult child. It's not automatic. I have to go through the proper channels to ensure that I will continue to be the one to make choices for him. I know him best in this entire world. The court has to agree with that decision. I'm sure it won't be a problem. But still. They have to appoint me as his guardian.

And while we might not be taking "senior" pictures of him. I will continue to take regular, everyday pictures of him. And continue to share the heck out of them with my friends, family, and social media audiences. I keep it pretty real. And the world probably needs a little more reality at times.

Congratulations to my friends' amazing children entering their last year as a child. God has blessed you all with so much goodness and it makes my heart smile to watch them grow and develop.