Wednesday, April 7, 2010

Dandelions, bugs, birds and cracks in the ground.

I often wonder how Bug sees the world. I can not imagine being stuck on dandelions, bugs, birds, cracks in the ground all the time. This is just a few things. There are times when just thinking about it wears me out. Some weeks it seems like it's unbearable.

It's actually very funny when you think about it. Having a child with special needs I have decided is never dull. I never know what to expect at times or its the same thing over and over. Here are a few examples.

1. Parking in a parking lot. Every store I have a specific area that I try very hard to stay around. I know which areas have the grassy curbs to avoid the dandelions, bugs, etc.... I know which area in the parking lot has large cracks in the pavement. I try to avoid the area in front of the store that has the landscape. Or I just look like a crazy lady and run real fast pass the area :-o.

2. Hospital parking. When we go to the hospital every week- depending on where I park-if its in the parking garage which has an area reserved for therapy. I know that I will have to deal with the fenced area right in front which over looks a landscaped area- so I unlatch Little man and Sierra and get them out. I lock the door really quick and go around to the other side to grab the baby and Bug's hand before she sees the fenced area. If she does it can take 5 minutes or more to navigate away from it. Then inside the hospital is a window for the gift shop and even though it has been the same stuff for months she has to stop and look at it. Not just her but Little man, Princess and me have to look at it again or it will turn into a meltdown if we don't look at it again. No way around the window-I tried all kinds of things.

The other parking area I have to pass all the grassy areas. I am thankful she knows what weed killer is. She thinks they have all been sprayed and will not grab them. We all still have to endure looking at dandelions. Along with every stick and then she has to put them in a crack in the dirt if its still there. The entrance area has a long planter wall that goes down the hallway for a good 20 or more feet. Sigh, do I need to say more. Weed killer does not work on silk plants as an excuse.

If the hospital is extremely busy-I have to park across the street in the overflow parking. I don't even want to talk about that!

3. Grocery stores. The majority of the time we all go together as a family. Thank goodness. While Daddy grabs the cart. I grab Bug's hand and walk very fast past the floral department to the last area of it and let her look in the glass case filled with flowers. Then as soon as Daddy catches up I grab her hand again and lead her away before she looks back. I dread the holidays that have flowers associated with them. The flowers are up front then. Sometimes she gets in the door before I can grab her!!! Next is the bakery-we have to look at every cake and cookie decorated. The bakers don't even ask anymore if we need help. On the aisle that has the sprinkles for decorated cakes. We try to avoid but she knows that they are down there and takes off running to them sometimes. The grocery store is full of all kinds of challenges.

4. Daddy and me can hear the story 2 or 3 times in a row. It doesn't matter if we are all in the same room listening to her. I can tell her," I heard you tell Daddy that remember I was sitting right next to daddy and I heard you tell daddy." Her comment is "I was telling daddy the story now, I want to tell you" it's the same story. If she suspects we where not paying attention she will start over again. My brain gets tired thinking about it.

5. Going from house to van at home or from van to house. I usually go out first and put everything I need inside. When coming home I go and unlock the house door and drop everything inside before I release the kids. As soon as I open the door Ann runs to either the side of the house in the neighbors yard. She goes to pick dandelions. We have ours sprayed. I keep thinking I should sneak over there and spray the neighbor's yard, it's not that the weeds are bad over there. It would save me some sanity. Then again she might run to another house further away.

We have a tree trunk stump in the front of the yard and for some odd reason she is crazy about it. She puts her collection of things on it. Sticks, dandelions, dead or live bugs, leaves and anything else that catches her fancy. Those of you who visit me-check out the stump next time.

My neighbor across the street from me gets a kick out of it and laughs and thinks it's cute! She finally asked me one day, "why I am always chasing her" and why she runs this way or that way." She is aware of Bug's disability. I really do like my neighbor and I can image it is quiet a scene to watch. We are now her entertainment.

This is just a few things I can think of at this time. Most days I can laugh things off, some days I want to just cry, and most days I ignore those who stare like you are in need of parenting skills. Next time you see a mother struggling with a kid don't be so quick to judge. Just because you can not see a physical handicap it doesn't mean that the child does not have one.

The beauty of Bug is her heart. She has a heart of gold. She always wants to pray for the police man and the driver when she sees them pulled over on the side of the rode, an accident. Every time she sees a fire truck or ambulance speed by, the lost dog walking down the street. Bug will either pray or ask me to pray. Always, in every prayer she prays for protection and for salvation if they don't know who Jesus is. To me the most important thing is the heart condition. She has a big one.

I know to some these stories just don't make sense or you may think that your child who is perfectly healthy does these things from time to time. Just for one minute imagine having your child do it 24/7 365 days!

I don't understand how she is wired. I don't even see what she is explaining to me at times with all the details. To her it is important. I know she is God's gift to my family and I am truly blessed to have her in our lives. I just need hugs, and encouragement some days. Even an ear to listen to me vent, cry and laugh.

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