*DISCLAIMER* This is a "non stamping" related post.
When I first started my blog, I did it so that I'd have a place to write down my thoughts, feelings and memories of our family. Mostly, I needed an outlet just for me....a place to pour out all of it....all of what comes from being a parent of two children with autism.
As I drove home today, after my son's IEP meeting, all I could think was....Just hold it together. Don't cry and scare Zach. Just do what you do and bury it all. You can burn up that keyboard tonight and pour it out and just release it for the day. So...that's why I'm writing today.
It's interesting that every time I get the emails scheduling the next IEP meeting I generally have the "Yep, check that box" feeling. Let's just do it and be done. The actual meeting day(s) though are definitely a whole other story. I woke up this morning (after not much sleep last night) with a feeling of dread. I wasn't sure why. It definitely was NOT my "first rodeo". Been there...signed that. But the dread was there all the same. I went to work and did my job until it was time to go and the dread built as the hours ticked by.
Now....It may be that you read this and think, "Ok, really? It's just a meeting". Um, No. It's not. I've sat through so many during Linz and Zach's years in school that you'd think I'd be immune to all of the "findings" "test scores", "labels", deficits and more. But, alas, I am not. If you've read anything autism related here before you may remember me saying that there are times that sneak up on you when you "mourn" the loss of what might have been again and again. This is one of those times.
You can simply click your big red "X" in the right hand corner now if you don't want to continue. I wish I could.
I had already read the copy of what was coming up in today's meeting that they sent home. That didn't change how I felt today though.
My heart hurts.
Not like heartburn.....not like my steady boyfriend broke up with me....
It is the most gut wrenching, piercing, take your breath away kind of pain.
That's what I need. I need to know the "why". I've lived my whole life doing what I'm told. I'm a good rule follower. Yep. No prob. I've followed rules as a child....as a teenager...and as an adult. I followed every single rule during pregnanacy. ALL of them.
I've loved God first and everything else has it's order after that. I've prayed, sought God....prayed for wisdom...prayed over my children....read books...researched....fought....and fought some more to get them what they need and deserve. Yet here I sit today feeling defeated again.
Now the test scores were not a shock. I've heard them before. The reality is that Linz and Zach aren't just cute, little autistic kids anymore. It's not about how funny the things that Lindsay says are. It's not about any of it. It's about the fact that they are now young adults and I have no idea...NONE...what will happen to my children if/when something happens to us. None. Linz can tell you the day, date and weather of the day that she got her 3rd (or 15th) Disney movie. She can tell you what she ate on the last day of school....in 3rd grade. But my son,.....my sweet, gentle giant...he can't tell me what he's thinking. He can't tell me what makes him laugh.....what he dreams about....what his wishes he could do.....nothing. He simply can't. He won't have a first love....a true love. Neither one of them has not one SINGLE friend that comes to visit, calls or anything. Not one. Can you imagine how lonely your life would be without that?? I can't and my children live it. That is pain....pain deep in my mother's heart....And I live with that every minute of every single day of my life. It feels like pain that is eating my heart from the inside out.
Don't get me wrong. I'm not venting looking for pity. Not at all. It is just unfathomable to me that I still....STILL live with the WHY and the WHAT CAN I DO all the time. I want to FIX it. I NEED TO FIX IT. But....no.
Tonight I'm sad and heartbroken. I feel like I'm being suffocated. I can't breathe.
So many people have said, "You are such a great mom", "I don't know how you do it", or....my favorite, "Oh, sweetie. God would never give you more than you can handle". Really? Really???? Live in my shoes for about 6 months and tell me just how soon you're ready to cry "Uncle".
I know that people mean well. Those people just want to be "supportive". But....Let me just set the record straight. Mothers of kids with special needs do NOT want to hear that....they do NOT want to hear that "God only give those special children to his toughest warriors". No one could understand what lives within me 24/7. The pain that doesn't stop every time I watch other parents and their children graduating....getting married....having grandbabies.....giggling about being "empty nesters". Tonight....all I can actually do is pray that God sees fit to live me and Mike live really long lives.
Tonight I'm angry.....I'm angry at autism....at God....at the schools.....Just plain mad.
My sweet Mama came down this afternoon because she knew....she just knew. She is truly THE strongest woman I know. She is faithful and loves GOD and her family first. She puts everyone before her own needs. She sat with me out on my deck and listened to me cry....she cried and shared her heart....and she was what God intended her to be. The most amazing example of what a mother should be for me. I know it hurts HER heart to watch me feel this way. Fortunately, she loves me and always has my back. I love her and my dad more than anyone could possibly imagine.
Unfortunately, Mike is on travel for the night and he's called several times. He felt horrible for missing today's meeting. His heart hurts too. I thank God every day for sending me such an incredible man to share not only my life but to be the most amazing father for our three children.
If you've braved it this far and are still reading, I apologize. I just really need to be able to write this down for myself. I feel wounded....seriously wounded tonight and I don't want to even put one foot in front of the other to make my way up to bed. Unfortunately, like in so many other areas, I don't have a choice.
I pray that God will send his Holy Spirit to minister to me while I sleep tonight. I need something before I face another day tomorrow.
Please keep us in your prayers,