Tuesday, October 30, 2012

A Comb and 7 Cents

Ever see Stand by Me? You have to have seen Stand by Me! I love that movie. Just recently it was on Nick at Night and we watched it with Andi Jane. She loved it too. How could she not. Such a great movie! But as I watched it I paid attention to things I didn’t as a kid, of course. Kind of like the first time I saw Grease as an adult and thought, holy crap my mom let me watch this movie… over and over again!? But I digress; I watched the movie and paid attention to Vern. Cute Vern with the buzz top that brought on this big adventure a comb and 7 cents, a comb for hair that he doesn’t even have, and 7 cents. We all laugh at the irony of this fact. You are going over night with friends on this huge adventure. An adventure bigger than anything they had ever done in their 12 years of life and no one brings food. Some bring some money and supplies, but Vern, Vern brings a comb and 7 cents. And maybe the reason I take so much notice to this kid is because I am this kid.
 I am a 33 year old (for a little while longer at least) woman, wife and mother of 3 who brings 7 cents and a comb on my life adventures. I say more often than not, wish I had some wet wipes. Crap I don’t have a diaper. Lily is 10. There has never gone a day she has not required these two items. Yet more often than not, I don’t have them with me.
I make sure Lily gets her meds 2x a day every day. Yet I can’t remember my thyroid pill I have been taking for over 20 years each morning.
They threw a wedge in my plans and rx Lily a med only for night time. Last week we went up north and I remembered her daily meds, but forgot that blasted night med.
 I can go to Target 4x in one week and still end up running there on Saturday, the day of a party to buy a gift.
People say I handle my life so well. They say “I don’t know how you do it” and I say. “I don’t!” I don’t do it. I just manage to scrape by. I scrape by with a comb and 7 cents.
This has been the craziest time of my life I think. Closing on one house and trying to fix up the old to sell. Thinking of boxing up everything, yes thinking not actually doing, planning a garage sale on Saturday, helping Andi prepare for her co-joining bake sale that day. Helping with a project at church (which I am totally excited about helping with) oh and preparing for Oliver’s tonsillectomy and adenoidectomy on Monday amongst the moving and such.
Oh yeah and Halloween is tomorrow. I have to take them trick or treating.
 Lily has an appointment with orthopedic on Thursday and I am more nervous than I put on because I know her scoli has gotten beyond manageable and we will need to do something this appointment. Plus her wheelchair is pathetic and she needs to go to wheelchair clinic.
 I am breaking out because of all this stress. All this crap I am trying to do with just a comb and 7 cents.
But last night I read a blog about a precious girl, a girl whom we have never met but lives a parallel life to Lily, we have friends in common and even the best pre-k teacher (in the world) in common and she is hanging on to life in hospice. Her family is trying to scurry up all the hugs and kisses they can get from their 7 year old daughter in these last moments with her and my heart breaks.
I look on the news and my facebook feed and see people’s homes washed away. Lives turned upside down by mother nature, and my grandpa, the only living grandparent left and I hear stories of how he can’t remember everyone’s names. His mind is a jumbled mess and one congruent thought is hard to manage.
So today as I worry and stress about my inability to micro manage my life, I have to let it go. I am not who I want to be. I am never going to be a Pinterest perfect mom. I may always just survive my life and never perfect it, but I realize the things I do have are here now. They may all not be here tomorrow. So I urge you to pray for those whose homes are devastated, I ask you to pray for the nursing homes with people trying to remember yesterday and I ask you to pray for this precious girl and her family. I pray that you ask God to place his ever loving, precious hand on their family and give them the peace they need right now. And count those blessing of which you do have. It isn't always easy when you feel ran down, but we will always be blessed beyond more than we will ever know. I read about friends of ours who moved their family to Haiti on a mission for God and they don't have hot water to bathe in. Hot water is a blessing! Sending Lily to school today was a huge blessing. My husband and baby boy coming home today is a blessing. My in-laws coming to help out these next few weeks is a blessing! We have so many blessings, even when we don't see them, they are there. Count them!
 You may not feel so perfect either and that’s ok. I have a father who loves my imperfections and I know he loves yours as well.

Tuesday, October 23, 2012

Harsh Words

A friend posted this link on facebook CLICK HERE and that friend isn't even a special needs parent friend. Just a typical parent who has compassion for others and his ears sting as well when hearing the word retard in a negative way.
I am not going to go all ape poo on the word and people who use the word and definitely not going to talk about politics. I have read some beautiful blogs on not using that word and I would never be a cut above what I read and I have no desire to tantrum about something I have done a few times in Lily's 10 years of life.
All I want to say is a few things.
I grew up with my brother who has cerebral palsy and is in a wheelchair, has full mental capacity, yet his body does not have full capacity, so the word was used at him ignorantly. Inappropriately. Ignorantly. Oh did I already say that ;)
The word had never sat right with me, but I used it when I was younger. I admit it, I did. But I was more of a well they are all jumping off the cliff, I should too kind of kid. But every time I said it, I felt sick. I am thankful for that conviction. I wish that upon everyone. My brother rode on a bus with kids with that MR diagnosis. I knew kids with that MR diagnosis. I knew better. I deserved more than a sick stomach, I needed a knock on my head.
Then I became a mom to a kid with a neuro disorder. Although the word was never told to my face, I found it. It was written as commonly as the sky is blue on almost every record Lily has. Severe Mental Retardation. How do they know? She never spoke a word to them. Oh that is how they know.... or rather how they think they know.
I found that word one day on a sheet of paper and the wind was kicked out of me. One word. Although it wasn't bold and in italics it might have well been because it was the only word I saw.
Then I go hang out with some friends and they tell me about this retarded kid who sold them shoes, I ask oh really did he have down syndome? "No he was just stupid". Oh. Ouch. My gut ripped.
I used to be overly sensitive to the word and would watch people say it in front of me and apologize, or they would say that is so re...stupid. And I would feel dumb for being so sensitive. Like it was me keeping them from talking freely.
But now things are different. Wanna know why? Because I have had some years to process that diagnosis. I've had a few years not to toughen up, but to change perspective.
I feel sorry for someone who says things like that Ann Coulter twitter quote. I feel sorry for her because she has no idea what it is to love someone who finds a kiss of the cheek a highlight of the day. To love a child who laughs at a gentle breeze on her face. A bumpy ride in her wheelchair can put her into giggly hysterics. A child who will never understand that people can be bad. A child where her world is safe. A child where no one is a stranger. A child who will never know regret. A child who will never judge others. A child who has no prejudices. A child who lives happily in her safe world with people who would run to the moon and back just to see her smile.
Ann Coulter is the one to pity. Not Lily.Certainly not me. People who find that word necessary to describe their pen that ran out of ink as retarded. Those are the people I pity.
So go ahead and continue using that word. Fine by me, because I know what a treasure I have worth far more than any gold and her name is Lily and she has a medical record that says she is severely mentally retarded, and she is and will always be the best gift life has ever given me.

Saturday, October 20, 2012

Remembering importance

I'll be honest, it's been a rough week. Lily has been having up to 8 good size seizures a day. And uncoutable little ones. Finding relief seems impossible and I had a mini breakdown. No worries, I have them quarterly. I have found the old bitter me pop up and like those gopher games I have to hit her on the head to get rid of her. But today is different. Seizures aren't, but today is. Because today Lily and I sit on a front porch swing in one of the most beautiful places I know and she rocks. I kiss her she laughs. The wind blows her face ad she smiles. I know that dispite all we can't change, the things we do make all the difference in her quality of life. Our job is to make her time on earth as wonderful as possible and that fact has never been more clear to me than right this very moment. I write this for nobody but myself. A reminder back in the real life of what is most indeed most important.

Tuesday, October 16, 2012

Updating

So much to say, so much not to say. Ever have an inner tug of war going on in your brain that if you speak one minute you'll say one thing, but wait a whole nother minute and you will stay something totally different? It's like trusting your evil twin to write and then taking over and having your sweet self speak.
Do I make any sense? Ugh.
I think I am just working off a really full plate. Every time I eat something off that plate and it is gone something else gets stacked.
We finally got everything submitted to the underwriter and it is like holding your breath just waiting for that final "you are approved" email. I just about gave them everything from the paper trail of my birth starting from my parents first date. Short of giving them our first born, I don't know what else I could do for them. I am optimistic the email is coming and soon. I just want to exhale.
And because we didn't like the ridiculous pricing of the options on the home we went standard with most things and plan to DIY it come closing. Ugh. We will be happy we made this choice I am sure. Next year sometime. In the meantime it is talking our faces off on wanting real wood floors but wanting the prices of tile. Wanting wood shutters and wanting the price of mini blinds. It's what color in what room. It is like Pinterest overload to were I dream of colors and floor samples. All exciting stuff. I love that we get to move. This is our dream home. I never imagined us ever in a home bigger 2,000 sq ft. I am not complaining, I am just overwhelmed. I want a bigger budget. But don't we all. These are first world problems and I know how fortunate we are. I just want to hit fast forward to Christmas day and us sitting around our tree in the new house with this all pretty much behind us.
Andi and I will be meeting the principal at the new school and getting acquainted over there. I have butterflies for her. I hate pulling her out mid quarter, but she wants to do it. It will be so much easier for me, but I just can't imagine switching schools and in the middle of the year. This coming from a girl who went to the same elementary school, junior high and high school. I graduated high school with kids I graduated Kindergarten and 8th grade with.
But Andi at the age of 7 is a far cooler person than I have ever been nor ever will be. I know she is good.
Lily stays at her school and will be bused the same as usual. This I am grateful for.
Andrew and Oliver are heading to South Dakota for his Grandma's auction of her stuff. While he is away my mom and I am throwing a big 40th birthday bash for my brother and sister. We will wear costumes and have a great time! I hate to go without Andrew though :( We have been on fall break and by we I mean Andi and Lily. I have no break. I still work. We got a new gal to help with Lily on my work days and she was great those first two weeks. Unfortunately this week we had a miscommunication and I didn't have care for Lily, but Andrew came to rescue Monday and today Lily is my co-worker and she is a fine one at that. She doesn't gossip at the water cooler, she doesn't talk my ear off, she does require me to feed her, but considering all that she doesn't do I think she is just fine. :)
Although I should share that at 2pm she is on seizure number 7. She is taking turns from 1 minute long hard tonics to 5 min long less abrasive complex partials. I have tried to come to peace with this. I have fasted, I have prayed, I have asked for wisdom and for the most part I am much more accepting of it is what it is, but I can't deny the little crush in my heart for each one I witness. I know she has them daily, but I am sitting next to her, I catch each one. I see each one and a part of me wants to kick the seizure monsters butt.
But we're ... boom just had her 8th. Here is the silver lining, she is with me. Not a new caregiver. We are going to have to make changes. Seriously.
Back to superficial stuff that makes up our lives.
We are having a garage sale on November 3rd and Andi has been planning her bake sale for weeks now. She has the items she will bake and what prices each item will be. Although I did have to tell her most people will not buy a $2 oatmeal cookie. Wrong neighborhood.
Oliver has his tonsils out (not so superficial, my heart is torn up about this) on November 5th.
His tonsils are enormous  they almost touch. X-Ray says so are his adenoids. They all gotta go. I am convinced he will sleep and even eat better now, but we just survived this with Lily last year. I know how miserable it is and so sad my tiny little man has to now endure this. And then my poor Andi Jane has to watch another one of her siblings get special attention.
I am convinced she will break her leg just for some special medical attention.
Ok hubs is on me to wait for it... look at flooring. I must go. Not even gonna proof read. Not too many red squiggly lines so I assume I'm good.

Tuesday, October 2, 2012

Shedding Some Lights

My heart quickens when I realize I am ready to post on this subject again. Well I already did post on it, just on wordpress to an audience of none.

Linking it here changes things and makes my tummy flip flop.


I first wrote this http://lilyannablu.blogspot.com/2011/01/2010-in-depthmetaphorically-of-course.html


And then this http://lilyannablu.blogspot.com/2011/06/to-share-or-not-to-share_23.html

Then I never said another word. Some may think good, that doesn't need to be discussed and if you feel that way I am sorry for this next post. But many asked me to share how we survived and I promised to do so and just never felt like I could until I 100% believed what I wanted to say.
God gives us trials to go through and yes they suck and yes we feel like throwing in the towel, but if we don't and we dig deeper and find our way out we are so much better for it.

So here is the post I wanted to share:
http://calmamongstthechaos.wordpress.com/2012/08/07/shedding-some-light/


Thank you for letting me share my heart. I have taken this blog on a long journey of this crazy life and I feel like we are moving to a brighter place. A new beginning of sorts for me. I have made some changes in my life and have been following God much more closely than I had ever before and he is taking my heart places I didn't expect. I am excited to see where we all will end up. Thanks for following this ride and sending me your awesome comments that make my heart swell. I feel like although this is just a blog, a lot of good is being done through it and I just knew I had to share this post if I want to continue staying honest to myself.






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