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Sharing this amazing give away! Who doesn't need pampering?!

Some of the lessons....

Anal? OCD? Particular? Organized? Not sure what I would call myself, but I have some of those traits. Not in all things, but many. My classroom was just so. My books were and are organized just so. I don't always get my clothes put away, but  I am very particular how they are washed and dried. And they are all hung up facing the same direction and in color sections according to short and long sleeve. Kind of sick. Other areas, you'd never guess I cared. Car would be one. My poor, poor husband!!!

One of the things I am extremely particular about is books and magazines. To have corners, pages torn or colored in will throw my mind over the edge!!! Seriously, inside I think I will die. Crazy I know. The library should be a wonderful a place to visit and take a classroom of children. Not me. the thought of bending books took the joy away. Crazy!!! I KNOW!!!

Well, now I have Carmyn!! A characteristic of Angelman Syndrome is that our kids are very oral. My Carmyn is no exception to the rule.  She LOVES to chew on books. What does that do to ME???? Well, I nothing. I still don't "love" it, but I have grown tremendously in this area. What Carmyn has taught me is things are just that~THINGS!!!  People are important!! Health is most important!! Relationships are SUPER important!! Things are not!! Carmyn can destroy a lot. And in a short amount of time. As a family, we have learned if it is important, you'd better keep it up. Otherwise, it's fair game!!!

I love that God is using Carmyn to stretch me!! I need it.  I need out of my comfort zone.

Will This Be The Time???

   I have a million things on my mind 24/7. I have thoughts I want to get out, fears and blessings I want to share and just babble to someone all the time. Time gets away from me. Four kids, Homeschooling, housework and cooking pretty much keeps me busy. Most of my down time, I want to do nothing. Brainless, no effort, be in a veggie state and watch TV. Which, I get to do often!! :) Roughly 9:30 each night.

     It is September again. That means Carmyn is another year older. This is so bittersweet.  It means another year of Angelman Syndrome. Another year and she is not cured.  You see, I was arrogant. This dawned on me recently. I WAS ARROGANT!!!  I did not think it was possible for me to have a child of "Special Needs". Chris and I had come through a really rough time taking care of his dad and almost lost him due to a serious accident. He had very intense rehab and was just getting easier to care for and then BAM!!! We have Carmyn and realize shortly she has problems. So we do what all parents do and we become educated. We know what to expect. But, again I am arrogant. She won't have seizures. No way. We're different. We are "good" and "educated" parents. We have favor in the eyes in the Lord. Well, that only lasted until she was 15 months old. So, disappointedly we put Carmyn on her first seizure med. Then I was arrogant once again. Okay, we will take meds. But, we won't be "those" people. That family. We will have control. And with a super tiny amount. HA!!!! That didn't happen either!!! What made me believe I had more favor? How was I different?? I believe it came mostly from a place of denial than a prideful place. I just didn't want to accept Carmyn had a disorder. Something as severe as AS. And what did that mean for my "perfect" family I asked God for? What did that mean for our future?

   I laugh a little now.  I can never be "good" enough. None of use have earned that!! Bad happens, diagnoses are made and struggles happen to all shapes, sizes and colors. We are not immuned. It is apart of living life here on this side of Heaven. What do we control?? How we live with it. Over the past 6 months, God has really opened my heart. Really put in my heart to share my journey, my faith, my struggles and share my family. God promises in His Word in Romans 8:28  And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose. I/Our family, including Carmyn, has a purpose. It is all for our good and His Glory!!! Does that me it will be easier??? HA!!!! NO!!!!! I know better than that. But, He is good and faithful. I know whatever we struggle with as a family, we will get through it if we keep our focus on Him!!!

   So, as Carmyn approaches 6, I hope I can be slightly more open to sharing Carmyn. Confident that SHE TOO is a blessing to others. Allowing God to use her. Sure, some will turn and shun her. Some will shake their heads in public. Some will "Bless Her Heart", but never offer more!!! Never get in and get dirty. (BTW-I hate that term. Sorta rude.) So, maybe someone will get to know her like I know her!!!! Love her!!! See her for a beautiful, 6 year old, full of life girl~With her daddy's wicked sense of humor!!!  That is my prayer for her 6 year here!!!

  *** Let me also claim, I HAVE NOT GIVEN UP HOPE!!!!!!! My God is BIG!!! I believe I will hear Carmyn's voice one day. I really do!!! I know science is close!! I know God's timing is perfect!!! I am only asked to deal with TODAY!!! So, that is what I am doing. Dealing with and sharing my day!!! Only God knows tomorrow. Frankly, it comes with too many worries and fears!!! I like the one day at a time much better!!! ***

Opinions

Opinions: In general, an opinion is a subjective belief, and is the result of emotion or interpretation of facts.

Opinions. Funny aren't they? It can determine what you do or not do. Sometimes that could be good. Like a child that doesn't go through the "rebellion" stage for the fear of opinions or disappointment. But most of the time, this is not good. I, for one,  have been known to make a decision based on what I "assume" others think I should do or how I will be judged, instead of following my heart. 

This came to a head when the twins were born. I had THREE major decisions to make all at once. All three of which were extremely important. I was frozen in my decision. Chris was extremely supportive. He had his opinion, but he also supported me in whatever I decided regardless.

In 2010, Aubrey and Addyson were to born in the late fall. Colton turned 5 and was MORE than ready to begin Kindergarten. Carmyn turned 3 and now qualified for "Developmental" Preschool with the county. I can send both of my kids to school and stay home to get to know my sweet little girls. Sounds SO easy right??? BUT, that is not what I really want to do. My heart wants to Home School. But what will people think of me? Home with a  Kindergartner with a  3 year old disabled child and twin newborns at home. Sounds a little crazy?!?!?! No one would blame me for sending Colton and Carmyn. In fact, everyone would expect me to. During the time I "toyed" with my choices, I would often be told, "I don't know how you can do it?" or  " I am glad I am not you." I also heard, "This is just a season. You can do it this year and pull them out next year." OH THE PRESSURE!!!! Oh, the thought that someone thinks I am letting them down or God forbid MY OWN KIDS down killed me. I seriously had to fall on my knees and pray. Pray what to do and then strength to follow through without guilt, shame or  care of judgement.

So far my choices were to send Colton to Kindergarten or Home School? Send Carmyn to Developmental Preschool or keep her home. Then my third choice was to take a break from therapies. While that sounds like an easy answer, it was not. Carmyn had been in 3-5 therapies a week since she was 9 months old. For over two years, I had become accustom to running the roads. And furthermore, I hadn't come to the place yet where I truly released Carmyn into God's hands. "I" was still trying to heal fix her. The further in my pregnancy and the BIGGER I got, the more of a factor it became. Not only was I wearing myself out mentally and physically, I also needed to prioritize the health of my babies!!! The first of the three decisions I made was to finally take a break. The end of June was my last therapy for 2010. Seriously, the moment I voiced my decision and shared it with the therapist, I felt better and my whole view changed.  I was finally focusing on me, the babies, my family as a whole and not putting every egg I had into one basket, Carmyn. This was the beginning for me. I had to finally realize my baby girl wasn't going to be "normal" tomorrow just because I spent all this time running to therapies. While I believe therapies are important today, I won't live and breathe them and sacrifice my family anymore!!!

Why were these decisions difficult to make? Opinions drove them all!! What will they think of me??? What will they think of my choices??? Who exactly is "they"?? Good question. Everyone! Anyone! Family of all kinds. Mine and Chris' both immediate and distant, former co-workers, friends, therapist, doctors, and strangers. I feared all opinions. I feared I was letting someone down. I feared someone just might think I am not giving all my children the best. I feared people would think I am a nut and off my rocker. What does it matter??? Some of these people I never see. Some of these people I see only once a year. So, why should it matter??? That is what I had to wrestle with. What does it matter?

During this time, I had two very important people on my side praying me through this. Two of my biggest supports from day one and are still today. Two of my biggest prayer warriors. My husband Chris and Sister~ In~ Law Tausha. My rocks. They let me cry, let me anguish and let me vent. One of the key verses that helped me through this time came from Tausha.

Proverbs 29:25

Fear of human opinion disables, 

Trusting in God will keep you from that.

I had to cling to that scripture, that promise, daily for months and months.With prayers and keeping that truth close to my heart, I decided to give therapy a break, keep Carmyn home and start teaching Colton Kindergarten. I have never looked back, nor regretted those choices. If I would had made all three of those choices based on fear, I would not be writing this blog. I would not have come face to face with trust in God and God alone. I would still be making decisions based on fear.

Today, I still fear opinions, but I am getting stronger. I worry less. I don't shout to the world, I HOME SCHOOL!! I am one those nuts!!! ( I don't think home schooling is nutty at all btw!!!!!!) But I do and I am very proud of Colton and our accomplishments. I can't make everyone happy. I can't make everyone understand. Many people may think I am weird, crazy, odd.....and that is okay. Because at the end of the day, my four walls and those within are EXTREMELY happy. We are not just "surviving", we are thriving.

Ephesians 3:20

Now to him who is able to do immeasurably more than all we ask or imagine, 

according to his power that is at work within us,

 

I am learning to lean on Him and not man to fill me up!!  

Growth in a twinge of sadness

Apart of my journey, or any ones for that matter, is dealing with new seasons of life. They constantly change. Not good, not bad, just apart of the journey. This next season is not exactly how I thought it was going to look.

Back in college, unbeknownst to my future, I wrote a paper on "Public School vs. Home School". To be honest, at the time, I didn't believe either were wrong. I felt it was individual. I could see pros and cons to each. Today, I feel very much the same way. The choice is very individual. For some families and the children, public school is best, while for others, it is home school.

I taught second grade for several years before having Colton. I knew I wasn't come back if at all possible. I knew I would home school if possible as well. It was just a gut feeling. I had this beautiful picture painted in my head how I thought it would look someday. Maybe a second grader reading independently, and kindergartner working on reading and a preschooler working on shapes and colors. I imagined all this happening at the kitchen table, surrounded by amazing artwork and excellent achievements!! Very idealistic I know. Also very real. I know many families that do indeed have this set up. I will be honest, I envy them. That was MY dream!!!

I am going to a home school conference to check out new curriculum this week. Part of this really excites me. New material, new challenges, new possibilities!!! The other part make me both angry and deeply sad. This is the year I am suppose to have the second grader and kindergartner. Colton 7, Carmyn 5. It is not going to look like "My dream!!!" I will still teach Carmyn what I can. But it will look DRASTICALLY different than her brother's. No colorful work books, smell of brand new story books to go with those workbooks, new pencils, bright colored eraser tops, clean, crisp lined paper awaiting her precious little hands to perfect her handwriting. Nope, that will not be Carmyn's school day. Carmyn's style is more about choices. Choosing right answers by pointing. It will include teaching self feeding, potty training, self control, waiting, patience, following one-two step commands and playing appropriately with toys. Also, she will not just sit for and hour or so. Her learning has to come in small 10-15 burst.Yes, her learning is completely different. Definitely apart of the story I would have written differently.

So, why don't I just send her to school???? She can learn so much by going to school??? Well, maybe that is true. I won't argue with you. It would be easier for me, she could learn and make many friends. But this is a personal, prayerful, hard decision that both Chris and I decided was best for our family.  I wrestled with this for a long time with God, since the day she was diagnosed.  Both with a broken heart and with MUCH anger towards God.  This was "My child", My plans", My dreams", "My family", I would scream at the Lord. I worried about what people would think of me if I didn't send her. Everyone sends their "special needs" child to school. I think it is just expected and protocol. I felt this enormous pressure when Carmyn turned three. Children with special needs can enter the school system at three in a developmental preschool. I had the pressure from her EI ( Early Interventionist), Case Worker, Therapist and friends. I felt the pressure which decision was right her us and us as a family. The pressure of disappointing these people. Pressure of letting my family down. The pressure of letting God down. And the pressure of letting Carmyn down. I literally cried and prayed for months feeling tortured by this decision. But at the end of the day, that same seed that was planted back in 1998 to home school my future children is the same seed speaking to me in 2012. It has sprouted with a little more growth confidence!!! Carmyn is different yes, but she is still apart of this family!! And I (we) have a very strong belief and faith that this is the path we are to take with Carmyn. For our four children, it is best!!! And even though many may disagree,  she deserves my best. So I am up for the challenge. I will tell you, when I finally accepted what our decision was and voiced it, I felt like a two ton boulder had been lifted off my back. I felt that "peace that surpasses all understanding". And I have never ONCE looked back. I trust this path God has put before us!!! God has given us this challenge. One I take very seriously!! 

So, I will go to this conference extremely excited and a twinge of sadness. I am only human. That I have accepted. I allow myself to get slightly sad occasionally. She is my daughter!! Who wouldn't? I just don't stay there. I hope I leave with many great ideas for Colton and pray I am pleasantly surprised to find something for Carmyn too.

I Didn't Write This Story

I have wanted to write with a fresh clean start for some time. I believe it will be good for me.  I am not a lonely person. However, I have four kids 7 and under.....you can imagine the conversations?!?! Not very deep!

I spend a lot of time thinking and reflecting.  I need to get my thoughts out. Share and review where I have been occasionally. And as of late, it has been about my family the Lord has given me, hence the title here. I Didn't Write This Story. If you would have asked me what my life would have looked like 12 years ago, the year I married, I would have had painted you a beautiful picture!! Idealistic!!! Perfection in my book. A little girl's dream of modern day fairy tale. I would have stopped working, had 3-4 beautiful, smart, charming, athletic children that stair step one another. My children would have been best friends, played games, been invited to parties, enjoyed sports, recitals, giggled and played jokes on momma and daddy. We would have had great family vacations with warm sleeping bags all in a row. The laughter from the children would have been heard from just the other room. I would have had cute little ducks follow me obediently around the Target, while slurping a slushy. I would have had little stair step children sitting around the table eager to learn and participate while I home school each of them.

Well, then reality happens.  Some of these things did happen!!! Just maybe not how I would have wrote it!!! The Lord has blessed our family tremendously!! I give many thanks and praises daily for it. But, BUT!!!! But, if I WROTE this story, it probably would have looked like above, not as it is now. And you know what???? I am so THANKFUL!!!! I am not certain the growth in faith, appreciation for my family and "don't sweat the small stuff" mentality would have come otherwise.

So what does my family look like? How is it so different?? Well, 7 years ago, I was blessed with a very handsome, healthy baby boy!!!! My heart was over the MOON!!!! I did get to quit work to be the full time mom I had always dreamed of!!! But, Chris' father had been in a terrible accident while pregnant, so he was a constant worry and need of care. He still is today. The joy really did get slightly zapped. Chris and I were both mentally and physically tired from the last 6 months, that I am sure had given different circumstances, we'd would have been a little more with it. Chris would tend to me, dad and work. It was exhausting I know.

I the next two years involved a job change for Chris, which helped the family a lot. Stressful, but good. Then two months after Colton turned two, I had Carmyn.  Carmyn was a WONDERFUL baby!! Laid back, quiet, not fussy, smiled all the time. Really too good to be true. Then at 6 months we became suspicious. She is too good. No baby just lays around smiling all the time. At 9 months our pediatrician decided to start testing Carmyn to rule anything out. Carmyn was still just lying around smiling. No cooing, no sitting up, no crawling, no eating solids, NOTHING!!! After 6 months of searching for an answer, we got one. NOT what we wanted to hear!!! Not apart of MY story!!! Carmyn had a genetic disorder called Angelman Syndrome. OH THE BLOW!!!! The MAJOR turning point in my growth in God and faith. My daughter MAY not walk, feed herself, be potty trained, learn, and she will have seizure, never will be able to talk.....wait WHAT????? What just happened? This journey for our family just changed forever!!!!For EVERYONE!!!  I will have to go back and detail parts of the process, but I will fast forward.....

Carmyn is two and and half and I find out I am pregnant. Not exactly trying ( I just stopped the pill because of complications), but not 100% preventing I guess either. Okay, no big deal. We can do this. Just one more. It will be good for Colton and us!!! But NO!!! NO! NO! NO! God had another plan, TWINS!!!! This was another turning point in my growth in with God and faith. How in the world was I going to do this?? Why did God choose a special needs child and AND AND TWINS on the heels of that??? I can't do it were my exact thoughts!!!! But I did!!! With lots of prayers, grace and mercy I did!! We did!! OUR FAMILY did!!!!!

So, as I reflect on my life. All that I have been given, I am SO glad I DIDN'T write the story!!! Carmyn is exactly who she is suppose to be today for our family. I have hopes and dreams that it will change!! But for now, she is perfect!! And Aubrey and Addyson!!! The DYNAMITE Duo!!! They are apart of the reason I sit here today and THANK GOD he has His own plans!! Those girls changed everything!!! I couldn't imagine life with each of my children and their distinct personalities. We all are and will continue to make each other better!!!

I so appreciate my family of six!!! I admire and appreciate the work of Chris. He works hard to provide a good home for us and is dedicated on being a good husband and father!! Always consciously spend individual time with each child!!! I love my first born. He tries to step in and be a man and help. This burdens me some because I just want him to enjoy being a kid. But he will grow into one amazing man. He is SMART!!! Athletic!! Funny!! Thoughtful!!  Carmyn has a future of mountain size possibilities that I am blessed enough to witness and be apart of the story. Can't wait!!! Aubrey and Addyson bring fun, spark and balance to it all!!!

So, does my home look like my childhood, modern day-fairy tale??? No, not exactly. It is better!!! I have 4 kids, I stay at home, I home school, my kids are stair stepped, my kids are beautiful, smart and charming. My kids are best friends. We all sit at the table to learn, it just looks a little different with Carmyn and twins. We still go to Target, but it looks a bit different. Carmyn needs a LOT of extra help to walk and stay focused and the twins are wild turkeys that fly the coop often...sigh... We have been invited to a few parties. We are selective to make sure it accommodates Carmyn. Those that we have chosen to attend, have been perfect!!! All because the people LOVE her too!! We still try vacations and restaurants. But are EXTREMELY selective and careful!!! No four fun sleeping bags in a row. But that is okay. We are there and making memories!! I am looking forward to our beach trip this late summer!!! It will be better than the last one!!!  The little girls should be "oceans" of fun and Carmyn is a walker this year!! All good stuff. My dream almost looks the same, I think it is the day to day that is different. The living it out. But it is ALL good. I have come to realize this story, our journey is not just ours!! It is yours too. Our extended family. The therapist we get to know long term. The clerk we see weekly. The stranger we briefly talk to and never meet again. It is our story. Our journey. My biggest hope and prayer is that our family can encourage another. Our family can help bring hope. Our family can be seen as the body of Christ living in and through us!!!! 

HIS STORY!!!!! 

Jeremiah 29:11

¹¹ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

I hope to be up and running soon....many thoughts to share. Even if it is only for myself!!!