HELP EMMA'S DREAM'S COME TRUE
I wrote this blog a few weeks ago, but for some reason, I couldn't upload it to Facebook. This week has shown me why that might have been. This week I watched my daughter almost get hit by a car. She is fine, not a scratch, but the call was close enough. Today, another brush with possible death. We bought some organic, all natural lip balm. I read the label TWICE. Emma put some on her lips... and my Mommy gut screamed," CHECK AGAIN"!!!! Indeed, there hidden in plain sight was Lecithin, a form of egg. Immediately I pulled over, gabbed the nearest cloth, and wiped her lips like there was no tomorrow. We were only a block from home, and we went and vinagered her lips. She has a strong, serious egg allergy that could kill her. Sigh, All's well that ends well, but it got me thinking about this blog I never posted. If something had happened, would I regret all that I have done for Emma, all that I have sacrificed? I know I wouldn't. Ever. regret. this. journey. EVER. SO read on, and see why I give Emma's recovery "All" of me.
I drove an hour one way yesterday to deliver some papers to a doctor we are seeing on Friday… I had to drive it up because I had made some cool graphs and charts of Emma’s progress over the past three years in the Son-Rise program, and they were color coded so they couldn’t be faxed. Yeah, I know, there was probably some cool way to scan and email them, but I didn’t know how.
Yeah, that is pretty much me. Color coded, spiffy graph….. ALL OF ME. That’s what I give Emma. All of me. Now, that doesn’t mean that’s ALL of me, I have lots of parts of me that don’t do graphs, would rather forget healthy food , biomedical treatments, food allergies, and the whole Autism thing. I do things for myself, and have pieces of my life that aren’t related to Emma. I find that balancing and healthy. But when I do something for Emma in assisting with her recovery, I give it all of me, and I love that.
All of me means I don’t stop at half way. I look where I “don’t want” to. I face my fears, my anger, my joys. I celebrate Emma’s triumphs…. her milestones in her recovery. I let go…. Again and again and again. There is no scared ground. There is no where I will not go, nothing I would not do, if I felt it beneficial for Emma. I’ll go without. I’ll face any criticism. I’ll be as different as I feel I want to be. I'll stand alone.
I love her completely, fully, without limits. I love her with ALL OF ME, I don’t let my fear hold me back for the most amazing relationship EVER with my little girl. I don’t need to know the outcome of our story… the end is not nearly so important to me as the journey.
It isn’t always easy, and often, very often I chose to feel lonely in this journey. But that’s just another opportunity… to grow and to change.
I love my life. Even the parts I would change if I could.
Giving Emma my ALL is my honor. I am grateful everyday for her.
I had another amazing adventure at the Autism Treatment Center of America last week. I spent the week in the company of about thirty of the most amazing parents I have ever met, and learned so ,so, much!
I learned that taking Emma’s learning to the next level can actually be more fun for her and I , and not so much like adding a “ have to” onto to her fun activity.
I learned (again) that “good” is the death of “great”.
I learned that making daily tasks fun doesn’t have to be more work, it can actually be less.
I learned that letting go means being fine, even great with everything thing that could happen. And I do mean everything.
I learned that building, requesting an initiating are three different bears, and how to extremely effectively do all three in the playroom.
I learned how to effectively use green lights to move Emma’s learning to the next level.
I was given tons of resources for building games and activities build especially for Emma, to address her particular challenges, and how to help others do that as well.
I gained strength to continue this journey, for myself and for Emma.
I gained the knowledge that contact with specific people can help me, and others I will avoid at all costs.
I learned that I am only alone in this journey if I chose to see it that way, that there are two groups of amazing parents out there rooting for me and cheering me on. These parents love Chris, Emma and I and understand the challenges we face.
I learned that each day is another opportunity to love what is happening, stay present and enjoy the ride.
Weeeeeee! Both hands up as I ride this rollercoaster!
A big heartfelt thank you to all who helped me get to New Frontiers….. Another life changing week…. Another opportunity to help Emma!
It’s been interesting to see how things have panned out since we put up this website. We have had incredible support in the form of lots of fans( over 250) from our page and things of that sort. For this we are deeply grateful: your “like” clicks, and your prayers and hopes and comments and donations for Emma are so deeply inspiring, they help us keep going when the odds seem against us.
At the same time we have had the opposite reaction from many we thought would be supportive. Our phones are not ringing here at the Stanley house, and there is an unmistakable lack of support from many we thought to be real true friends and supporters. Are we disappointed? We have our moments. But in general we are excited. You see, we don’t see someone’s opinion of us as a good/ bad/ right wrong thing. We don’t let it sway what we believe in.
We all go through times in our lives when we change. Change happens. When it does some of those people who have stood by you and been near you might not anymore. It’s OK… no wait a minute, it’s just fantastic! What if we all put out there just who we were, and what we stood for, no holds barred? Now I am not talking about blasting people and throwing heavy judgments around, I am talking about being who we are and letting others be as well. I believe the result of that will in our case be a cleansing, a new beginning, a realigning of clarity in our lives that will then allow the people who align closest to us to be close to us and we can all support each other. What a beautiful thing. And equally beautiful, the people who have fallen away from our lives, they in turn have an opportunity for clarity and realignment. My hope for them would be the same: that the space they have created by choosing not to associate with us or support us would open a space for something wonderful in their lives.
You see, we didn’t start this not to finish it. We didn’t plan to recover our child from autism. We didn’t plan on autism at all. None of us do. We put off for so many years believing we were dealing with autism. We didn’t ask for this. It wasn’t part of our daydreams about having a child.
But guess what? We are the parents of a special needs child. Our child does have a really unique set of needs that we have chosen to tackle in a really different and effective way. It’s not for everyone, this road we are on. But I’ll tell you this: We are deeply grateful to have Emma. She is one of the greatest gifts of our lives. We will fight for her and give her the best possible chance for full complete recovery. This determination is not based on whether or not a given group of people believe in us, or what we are doing. Our belief comes from careful research, consulting with top doctors and experts, and most of all observations of Emma’s extraordinary response to our program.
So, to those who support us: thank you thank you thank you! To those who do not: we wish only the best for you. That you would find your passion, the people or things you most want to support and fill your life with. If you just want to wish the best for Emma, even if you don’t support her program or the way we are doing things…. Go to her site, or facebook page and click like, make a donation if you feel moved to, share this on your walls, email your friends links. Call us and ask us to play. Either way, we wish you only the very best: That your journey would be filled with those who love and support you, and that you would find your bliss.
We’ve found ours. It’s in the eyes and the heart and the soul of one very special little girl named Emma Jean, fighting her way back to us, and back to health. We’ll stand by her always, even if it means standing alone.
It was crunch time this week. I leave for New Frontiers in 4 weeks. I am so excited to go and complete the third training course for parents running Son-Rise Programs at the Autism Treatment Center of America in Sheffield, Massachusetts. We still have a small balance due for this course, due now, and quite frankly didn't know how we were going to pay it. Now, as you can imagine, this is not the first time in the past 7 years this has happened. We've sold cars, liquidated savings accounts, some retirement accounts, and generally lived on faith a lot. We have learned so much about trusting in the past 7 years. Things happen for a reason, and things that are meant to happen, will. So, this morning we were having our all too familiar conversation about how to make this last payment happen, and if we could. It wasn't looking good. So, as we often do at such an impasse, we went into financial crisis mode: what bills could we not pay? Which supplements/medications could Emma do without, so we could get me to New Frontiers? There weren't any easy answers.
Later in the morning, Chris informed me we had, in the last 24 hours, received donations totaling just the amount we need to pay for New Frontiers! How amazing! We are so deeply grateful for all who donated. Please know you have answered a prayer! When I return from New Frontiers around Thanksgiving, I will be sure to let you all know some of the things I have learned and how it will help Emma!
Ellen is a counselor, educator and Biomedical and Son-Rise mom extraordinaire. She has many years of experience in public, private, "typical " and special needs educational settings, as well as extensive training as an Option Process® Mentor Counselor through The Option Institute in Sheffield, Massachusetts, sister organization of the Autism Treatment Center of America
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