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.
OK, we’re running a Son-Rise program, right? So aren’t we always “supposed” to be happy, excited, and ready to reach for our dreams? No, not really. It’s always what I strive for, that feeling called happiness, and I do know I make it myself. That having been said, I continue to learn that sometimes, a good cry is just what I want for myself, and it helps clear the air, and sets me back on my feet.
Now, don’t get me wrong, if you can do this parent of a kid with autism thing and remain happy every minute of everyday, you go for it! More power to ya! I mean that, and I do believe it is possible.
But for the rest of us, I’d like to plant an idea in your head: what if we all just felt our feelings? Stop avoiding them, stop running from them? Personally, I fight them. I think I HAVE to be strong, happy, brave, and have my act together , in order to be the best I can be for Emma..( how's that for a belief?) Guess what? I don’t have to do anything, and I definitely get frustrated, lonely, discouraged, and sad. Oh, I forgot angry… That’s a good one. I get angry sometimes too. Ok, a lot of times.
So I have been fighting these feelings a lot lately, and yesterday, I just gave in, and I cried: Hard, all day. Like my heart was breaking forever. And maybe, for an instant (but not forever) it was.
My life is not what I dreamed it would be. I have a child that is challenged by multiple medical and development issues. My marriage, though strong, is stressed: by years of back breaking work, unimaginable financial challenges, lack of time together, lack of support and understanding, a medical system that can’t ( or doesn’t want) to deal with what is happening to Emma. Witnessing the pain Emma is often in. Nope, can’t say this is what I had in mind when I daydreamed about marriage and family!
So yesterday was the perfect day to deal with some of the feelings I have been running from. To mourn what I don’t have, to be angry and sad and frustrated. To flip a fair number of people “The bird”, if only in my mind. And so I did. Copious tears, loud wails at times, a lot of anger. I can’t say it had a pretty ending last night.. I was still exhausted and angry and sad when I went to sleep. But I put it out there, I FELT it all.
When I woke up this morning, well, nothing appeared to have changed. My husband didn’t change, my child didn’t change, our financial situation didn’t change, and there was no great outpouring of support from the peanut gallery.
But I had changed. Since I had let go of all those feelings, ( it takes a lot of energy to hold all that in) I could again see why I am choosing to do what I do.How unimaginably gratetful I am to have what I have. I went into the playroom this morning for the first time in weeks… and had a blast. I thought up fundraising ideas, and I took care of household chores. I feel the HOPE again. I feel really, truly happy. I am sure I’ll have another day when I let loose again, and honestly, I hope you do too. It may not look like it did for me, but I hope you’ll give yourself permission to let it out. To feel what you feel. Because I find that’s how I can get back on track: Back to my dreams, Back to Emma’s Dreams, Back to HOPE.
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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