Pages

Monday, November 19, 2012

ITS ABOUT THE ONE

Good afternoon friends and FAMILY :)

I hope this month has reminded you about the many things to be thankful for in your life. I know it has me. I have learned to be thankful for things that used to be taken for grantet by me and many other parents.

years ago before Meg was diagnosed our family was involved (to say the least) in a church. We would go up to 5 services a week sometimes. I sang on the worship team and David set up and did sound. Before that we were very involved in children's ministry. For 16 years we were about the fathers work. We are still about the Fathers work, however the work is more at home then any where else. Six or so years ago God had moved us to Summit. It was hard for us to leave a very familiar and comfy place even to come to to place as sweet and healthy as Summit. We have struggled as a family and have gone through allot of changes.
Church has been different and just getting to one service a week as a family has been a dream for us. At times we have gone to one service a month because we have to take turns going. Meg and Caili have difficult times and have different issues. Both our daughters have autism. Caili has over come so much that it takes a trained eye to see that in her. Meg on the other hand at 12 skips and screeches. (Need I say more)

 At times when Meg was younger we would leave church with her screaming and screaming! Her arms flailing and tears flowing.  I'm thankful for Teri and others who have helped us feel welcomed and valued even in the midste of these fits. Meg has started having more seizures a couple of years ago so attending church and other activities became more rare for us as a family.
We belong to a life group, but have missed allot of meetings. Its easy to feel isolated. Its easy to feel alone.

Some people may have been okay with taking turns or going to church once a month....but hearing meg weep and cry out " I'm sad about church!"  would not let me accept this way of life. I believe that God has called us to be over comers and not just survivors. I believe that God My Father desires for Meg to be at church.
 Canvas is the service we go to as a family. God has made a way.
 
We still do not make it every week as a family but it is happening more and more. Meg is so happy to be there and now my mom has started coming and daughter in law too! Meg sings the songs and yells out yeah and hallelujah!

 Canvas is like having a little church inside of a big church. I know there are many stories inside of the people at Canvas , and this is just about one. After all isn't that what spreading the gospel is about? Its about the one sheep. Its not about how many come to church its about reaching the one. Meg is only one, but I am another her sister still another and her dad and her grandma .... reaching the one has touched so many more. I am thankful to attend church as a family and to hear Meg sing out to God! I am thankful for a healthy church that is about the Fathers work.
 I am thankful to belong to a body of beleivers that are focused on investing in and building up the KINGDOM of God here on Earth. I have to go now Remember to keep your eyes open for opertunities to be thankful in the little things.I know I will.


In His LOVE Arlene

Sunday, October 14, 2012

LOOKING BACK TO SEE TODAY

When I look in her eyes I don't see a disability...When I look in her eyes I don't see autism not usually any way.What I see is the past, before I knew of the struggles she would face. I see all she had to work through to get to where she is  today. I see the present where we can go to stores or to restaurants as a family (usually) I see her look at her dad with awe and say the words Daddy do you love me?...Today  I see her. I see how far she has climbed, and I am truly amazed! She sings to all the songs on K-LOVE and she ministers to everyone who knows her. She is little girl, and I have dreams for her. She reminds me daily (sometimes hourly) that she is not a baby. I think she thinks about allot of things. She can talk allot and can communicate allot better then before....  but her expressive language is not the same as yours or mine. I wonder what thoughts play in her head. She says I'm not a baby, but in side is she wondering then why the diapers? Is she wishing deep inside that she could do what others can? Does she feel alone, or lost? This last week we went to her neurologist so she could explain the last EEG she had. Her Doctor told me that the seizures showed up every where like all over. She said that the med she is currently on only help one part of her seizures and that she would need to be on Kepra also. We started the med on Thursday night Today she has been so much more aggressive. Its like she really cant help the fits and seems to really get repentant after ward. Wouldn't it be great if this med works and brings her out of confusion? O that would be a dream come true. I close my eyes and imagine her free. where she can have control of her own body. I can see her dancing the ballet like a prima ballerina. Or singing amazing grace in a clear and confident voice. I will support her though no matter what she can and cannot do. I will worship God and be thankful for every little mile stone met. And no matter what I will always love her and I will always dream for her. I must go to bed now . Its so late and my eyes are falling. Hey can I ask something of you? I want you to look at your own child and ask God to open your eyes to the gifts He has put into them. After that I want you to smile and hug your kiddo. Have a good day and be blessed.

In His LOVE Arlene

Wednesday, August 8, 2012

To the new parent with A special child

I have been thinking about the days when Megan was first being diagnosed. Life has changed so much since then.

 I was wondering how many moms and dads out there are just entering into the culture of autism, or any other realm of special needs. Can I tell you something?  I understand your hurt. I know what its like to be crushed as you watch your little one display odd behaviors. Behaviors that society will label them an out cast for. Behaviors that are weird and that will cause others to back away from you or judge you for.

 Dear one I want you to know right now that This is not a judgement on you from God. This is not a LIFE imprisonment. This WILL change you and it will crush you, push you down and, destroy who you are right now. This will take all that you have deemed important and push it back . Somethings that you find very important right now will not even make it on your priority list any longer. You will cry, You will be angry and dear one you will grieve.

 If you go through the process with God you will come to accept and appreciate your life. You will learn how to truly give your love away unconditionally, and in doing so you will learn what real joy is. You will be a master at having peace even in the middle of chaos. You will learn to fight the devil like never before because my friend you will be fighting for the life of your child .... I love that plaque that is forever etched in my soul, I'm not sure who wrote this or if I'm wording it correctly but  It reads something like this, "Having a child is the only way we get to see our heart walking around on the outside". Awww Isn't that so true?

 I know that when you had this child , when you first met him or when you named her....I know that you were not planning on hours of therapy ... OT, PT, ABA, You may not know what all those letters stand for now but Dear one you will. The ballet and baseball may happen but will be pushed aside for these instead. You may get to learn things about nutrition and supplements that you never wanted to know. Yes eating may never be the same again.
You see life as you know it today will simply fade away.

Dear one remember this God is good, He loves you ,and your little one. He did not give your child autism or what ever diagnoses is being considered. He didn't do it but oh He can make glory out of it. I know that reading this right now may be hard and you may be angry, You may even be angry at God. I was. If you are, simply tell Him. He can handle your anger, and He all ready knows about it any way. He wants to comfort you and wash your tears. He wants you to know Dear one that He will be with you every step of the way during this process and all other processes to come. It will be better if you notice Him there with you. I promise He will never leave you. He loves your child more then you do and has a great plan for them. He does not see disabilities OH no I believe in every one of us what He sees is His heart walking around on the outside.

Its so amazing now to look back at what my life was, at who I used to be. I am okay....NO I'm better then okay I am more of what God has created me to be. Dear one I love you and pray that you will live Gods full purpose for your life.

In His LOVE
Arlene

Wednesday, April 18, 2012

ALL THE TIME





God is good all the time even when I'm late for everything
God is good all the time when stress comes I'm still gonna sing.

Waken up brand new day bow my head
 God have your way
 Lead me guide me through again
Where you want me Lord do send


Getting ready for the plan
 Appointments commitments
Done all I can
Showered and dressed just one more thing
Wake up dear one and get her ready.

God is good all the time even when I'm late for everything
God is good all the time when stress comes I'm still gonna sing.

Special ones with special needs
Cant really get the meaning of plans
Yelling screaming apparently apposed
Calling to reschedule  appointments again.

Blender broken fridge is leaking
Anxiety rises w. each appointment made.
My life is different at times lonely
Don't wanna live my life afraid.

God is good all the time even when I'm late for everything
God is good all the time when stress comes I'm still gonna sing.


Feelings of helplessness and self pity arise
As fear tries to make its way in.
Than He reminds me of this mornings prayers
I hear me say where u want me do send

Apparently He wants me here
 In the midst of His spirit
Inside my home
Where we dance and sing and praise our God
Even when none of our plans get done.

God is good all the time even when I'm late for everything
God is good all the time when stress comes I'm still gonna sing.

In His LOVE Arlene




Saturday, February 18, 2012

Megs Gluten free casen free protien bars

We usually let our little dog Miss Bell sleep in bed with us. She's warm and cuddly but most of all she will awaken me if Megan gets out of bed, because Jesus knows I will sleep right through it all. Where did the days go when I could hear my little one suck her thumb or roll over? Man I was sharp, let me tell you. No one could sneak up, sneak out, sneak nothing! Well not any more. You see; when my head hits the pillow the world disappears. I don't know why. Not much has changed. Yes I am older, but that is NOT the reason for my coma like sleep. You see, the reason is simple. When it’s finally time for sleep I am exhausted baby!

OK, now that we've got that clear. I will just get on to what this whole blog is about any way. The other night while I was sleeping Meg got up! The dog was not in my bed. She was in her crate like a good little dog. NOT! I heard my husband waking me up like this "Honey Megan's up" or something like that. Well you get the point, right?

I get up to find her in the kitchen. She is saying things about food mostly chocolate. I thought perhaps she was hungry. YEAH maybe that's why she's up so late. I did what any good nurturing mommy would do. I tried to give her food. She was not interested in eating at all, which is rare for Megan Anna Banana. (That’s what I call her) THEN I saw why she was not hungry. There on the table was evidence that she had been up allot longer than we knew. Her box of gluten free protein bars. A box of 12 bars almost GONE! $17.00 a box! "OY vey!" Barbara Streisand said that one time and I thought it may be fitting for this. (I'm not really sure what it means)

I don't know about you but I am not going to just go out and buy another box! I can't just get these at any store. Megan's food needs to be purchased at Whole foods and that store happens to be like 35 minutes away from my house! Still Meg would need some kind of protein bar that would be readily available. So I thought, "Hey, why can't I make some protein bars for her? Someone had to come up with that protein bar recipe, right? Then charged 17 bucks a box! So I began to look at recipes and think about what I would want in her bars and I must say I made some pretty good, pretty healthy, good for Megi protein bars.

I thought I would share the recipe with y'all. I hope you enjoy it.



I went to allreccipes.com and ended up using the Farina bars recipe for the backbone of my recipe.


MEGS G-FREE C-FREE YUMMY
COCONUT CHOCOLATE
PROTEIN BARS

1/4 cup Earth balance softened soy free
1/4 cup unsweetened applesauce
1/2 cup organic sugar
3 teaspoons ground flax seed
1/4 cup powder cocoa
1/3 cup honey
2 tablespoons lemon zest (don't know if I really used that much)
2 cups dry cream of buckwheat
2 teaspoons baking powder
1/4 teaspoon ground Cinnamon
1 cup coconut Amando yogurt
3 egg whites 1 yoke
1/2 cup flaked coconut, organic unsweetend
1/2 cup sliced walnuts (optional)
Today we added chocolate chips too :) (no longer optional ) YUM






Directions
1. Preheat oven to 350 degrees F (175 degrees C). Grease a 9x13 inch baking pan.
2. In a large bowl, cream together the butter, applesauce, sugar and honey until smooth. Mix in the lemon zest. Combine the cream of buckwheat, flax seed,cocoa, baking powder and Cinnamon; stir into the creamed mixture. Blend in the yogurt and egg whites. Try not to over mix, or the bars will fall. Finally, mix in the coconut and chopped or smashed walnuts if you like them. Spread the mixture evenly into the prepared pan.
3. Bake for 45 to 55 minutes in the preheated oven, until the edges are brown but not the top. Cool and cut into bars.

This is why no one else eats what Meg makes , She likes to taste after each stir.














Megs faverite add on

look at my

Wednesday, January 4, 2012

A SEARCH FOR SIGNIFICANCE

Hi there Its been a long while since we've talked. Ive missed you. We have been busy with life. watching kids and grand kids grow. Watching them become what they will. As we see Gods hand move upon their lives we cant help to be in awe and hold gratitude inside our hearts.
I'm looking forward to this new year as I  slowly putting away all of last years sparkles and ornaments. Its been a really hard but good year.  Every year as I put away Christmas I never put away my joys. REALLY  I keep them out... all year long. This started about 3 or more years ago when I decided I was going to collect Joy. After all everyone collects something right? This year I am thinking of not putting away my peace, my faith, or my love. Yeah I think I'll start collecting those too. As I am putting away last year I'm thinking on the lessons I have learned so I am careful to keep those out too.
Right now I'm remembering a couple weeks before Christmas and decided I wanted to share a thought I had with you. after all you are my very favorite!
I was honored to be invited to a very special show. It wasn't the best light show. It didn't have any headliners that people would know (not to many any way) The band was off time and didn't seem to have there gig together,and the announcer didn't have the poise of Miss America....But still I was honored to sit in the EXTRAORDINARY Picollo school multipurpose room and watch as one by one children would take there place as the star.
I don't think I have ever been more moved or had my breath be so taken away. Tears filled my eyes as I had what might be the biggest and most important revelation of my entire life.
The revelation you ask? Simple my friend it is this one small thing.
We as human beings on this great planet earth all want to be significant. We all want to matter, and whats more important to catch in all this is We all do matter.
I watched as children who couldn't sing would stand on stage or sit in a wheel chair and do what ever they could. They all were moved in someway by the music and when they were done with their turn they would go off stage taller and prouder than when they first went on. I saw them light up and really sit up  taller. I watched as parents sat in that room and clapped and rejoiced at what their kids and these kids could do. It wasn't a night of seeing disabilities It wasn't a night of seeing what has crippled our kids. No it was much more than that. God has made every single one of them for His great purpose just like Hes made everyone. When I thought about this for a while I really believe a wall came down in my heart. We are all so much more alike than different. we all want to be loved, to be treated as an equal, to have a friend even if that doesn't look the same in every ones life.
I understand that this may not be a new thought or some great revelation for you. You may have all ready walked in this before. To me It was life changing. I have been Megan's mommy for 11 years and in that roll I have been nurturer, disciplinarian, and advocate....ah but what a greater advocate I can be for her if I can stand face to face and embrace her as a whole entire person,What a greater advocate I can be for her if I can see her as even more than I have before. My sister in Christ and fellow human walking side by side. I was honored to be at the greatest show ever that night, but I am so very honored to get to help Megan find her significance in this world. I want more than ever to change the worlds view of these kids specially as my view is ever changing. Thank you so much for listening. O and hey have a very wonderful and prosperous new year! I will be back soon



                                        In His LOVE Arlene