HELP EMMA'S DREAM'S COME TRUE
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.
It's funny how life provides you with lots and lots of learning opportunities. Sometimes, it doens't feel so funny. This past week has brought us the opportunity to say good-bye ( for now) to two family members, as they have "graduated", or as many people say, they passed away. One was my husband's dear, sweet "Nanny" and the other my Great Uncle Dan. Two people who will be sorely missed. We were able to attend Nanny's service, as it was right here in Bar Harbor, on a beautiful fall day, as well as to help with cleaning her apartment out and things of that sort. My Uncle, on the other hand, I will have "make do" with sending letters to his wife and son, as attending his service was not possible right now.
During this time of good-byes, I chose to go for an afternoon to the land of regret. I had a lot of it at first. I hadn't been able to do the things I might have liked to for both Nanny and Uncle Dan. Visits, frequent or infrequent, local or long distance, have not always been possible. For Nanny I did manage an occasional visit and cooked for her on a few occasions, stocking her freezer with homemade, easy to reheat, good food to nourish her.
Uncle Dan, well, not so much. He lives about 7 hours away. We were very close when I was in college and traveling back and forth from Ohio to Maine. I enjoyed he and his wife Louise so much, and love meeting his second wife at my wedding, a bit after Louise's death. We sent Christmas cards and generally stayed in communciation with each other. It was really great. Then Emma was born. I mean, do a really need to say more? He was out of sight, out of mind, and when he did come to mind, I didn't act. Even the Chrsitmas cards stopped.
So many balls in my life have been dropped in the name of caring for Emma. It's easy to have regret. No very helpful, but easy. You see, I pick the things I want to prioritize, and what I want to let go of. I did it then and I do it now. Many people don't acknowledge this fact but it's true. We are always doing what we want to do. Always. Would I have changed what I have done for the past 7 years? No way. Do I wistfully wish I could put another 12 hours in the day so I could have done more. Absolutely.
So what's a girl to do? Well, first off, leave the land of regret behind. Check. Second: do right now, what I want to do. Pen to paper I will write my dear Uncle's son, and wife, and I will tell them each of times I thought of my uncle, wanted to reach out, and why I didn't. To let them know that even if my letters didn't come, in my heart, I was there.
You see, parenting a child with special needs doesn't just happen when it's convient, and autism doesn't just "go on Holiday" when someone is sick or dying, or death hits your family. It's all the time. And the demands are more than you can imagine. Sometimes, balls get dropped. It happens.
Please know if I have dropped a ball with you, it's not for lack of love or trying. I love deeply, but not perfectly. And maybe, just maybe, that, in itself IS perfect.
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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