“Paco, we’re not in Kansas anymore….”

I went to the doctor Tuesday. I have a raging ear infection in my left ear. Seems I recall having read somewhere that ear infections are your body's way of saying that you are not happy about something you are hearing. Appropriately enough the doctor said my ear looked very "angry". Ya think? I attended a parent education meeting at Bella's school today and as I sat in the front office I kept fighting back tears. I just don't want to be here. I don't want my precious daughter to be here. I don't want this journey. And I don't want to be strong anymore. Am I truly this vain? This selfish? This self absorbed? Good God I have to remind myself how thankful I am that she is so physically healthy.
I went back to the meeting full of moms. All moms of special needs kids. Surely I don't belong here??? But I do. A whole new definition to "I once was blind but now I see" exists for me. Suddenly I see it all. The delays, how far behind she is, how inappropriate her behavior can be. It's all there. It has been all along I just chose to push through and tried to believe it away. But we are here sliding down this strange and scary rabbit hole neither of us knows how to navigate.
I learned a lot in the meeting about resources that are there for our special needs children. It was uncanny to be in room full of moms whose every days looked like mine….you cannot go to the bathroom with the door closed because you have to listen the whole time, you cannot walk away from your child because they will choke themselves eating, going to the grocery store is exhausting, you never get to sit and do just one thing because part of you is always trying to prevent the land mines from exploding in your child's world and of course, never sleeping. How can that be all of our normals? How can I have convinced myself for the past two years that it was normal? But I did. And I think that is part of what has made it so much harder to accept. Our days have not been normal. I have just been really good at duck taping us together and insulating her. Maybe it was not fair to any of us to have it all come crashing down at one time but that is neither here nor there because we are here now. And now much like a bandage I've got to rip off all this leaky duck tape and rebuild our world. Now life is about pushing her more than insulating her, more about reaching out then putting on the smile, more about honest prayers than happy ones. If the Lord has been determined to break me of my need to be in control He has now succeeded. I have never felt more ill prepared or less like I have it all together than I do right now. And never have I felt like my knowing what to do has mattered more than it does now. This is her life. This is our life. I have to learn how to take care of her and take care of myself, my marriage--my whole world is caddywompus and I need to learn how to right the ship, keep sailing and navigate unchartered waters while cooking dinner, potty training, folding laundry, putting on makeup, etc all at the same time and I feel like I am already two years behind.
Today was a rough day…her world apparently felt caddywompus as well….lots of screaming, lots of frustration, lots of falling down for no reason. All I could do was hold her when she would let me. And pray.
The mom sitting next to me in the meeting today leaned over at one point and said to me, "Oh hun, you are in a whole new world now." Yup, Paco, we are not in Kansas anymore.


GingerLouise Clothing said...

hey sweetie:) I'm sure your a great mom to that little beauty and your honest. I dont have a "special needs" child but a lot of days i feel the same wy exactly as you. I think lots of us feel thay way. God has chosen u for this forr a reason. You will survive and grow and shine, both of u and everything will be ok. xo

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