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Being in Their World

I am D’s mom. From the beginning of my being, I was destined to be D’s mom. From my beginning, I have belonged to Jesus, my God, my Love. I may have just turned many readers away. I have to accept that it is okay. But, this is D’s story. Without my story with Jesus, I can’t tell D’s story. We have lots to share, but I want to start that D was MY MIRACLE. I prayed for D before I even knew how to pray. I was in my early twenties and I had a dream. I called my mom (who else do you call?) I described my dream to her. “ Mom, you know I don’t want children, but I just dreamed of this beautiful baby boy with big blue eyes and I remember my heart melting. Then I panicked. I didn’t know what to do. So, I put him in the garage and closed the door.” She laughed and replied, “Oh you may want to put them in the garage and lock the door, but you won’t.” Six years after that dream, I was blessed with my beautiful daughter. She taught me how to take care of babies, toddlers, preschoolers and kinders. She taught me that my love was to teach children. And yet, I always yearned for that beautiful blue-eyed baby boy. Miracle upon miracle, another story for sure, we were blessed with D. I am sharing D’s story because of the lessons we have learned together. This is our most recent lesson. Many more previous lessons are to come. I’ve learned to embrace his world through his eyes, just a little more this year, and that is a big thank you to the chairlift time. Let me set up the learning moment: I love to ski. It is one of my outlets. During a three year season of loss of grief losing my parents, then a best buddy, then my job, I had a time of crisis that resulted in a time that the only reason I woke up in the morning was to put on my ski gear, head to the snow, enjoy the thrill of cold air, amazing scenery, mindless exercise, and Jesus. The slopes are a happy place. When I was six, my dad found a ski instructor, Steve. Steve taught me to ski - alone. I seldom skied with anyone from the time I was six until now. Another story for another time. Now, I ski alone due to schedules not matching with my husband and my mental health needs to “work things out” in my head. I rejoice today that I learned the power of ski lifts. Ski lifts are short; it’s beautiful scenery, refreshing air, and the person(s) you ride to the top will never remember your name. This was our no-name moment last week. I hopped on the lift, headed to some great terrain, and the ski-lift stranger just happened to be a pediatric anesthesiologist. We began discussing life and the topic came up around our sweet boy. D is scared to death of needles. Who knows why. A little time out: God gave D a strange set of chompers (teeth) . They look like the Jack-O-Lantern Carving. However, we go religiously to our dentist, Dr. Kimche. Dr. K gets D. He’s laid back, talks trucks and horses with D, and then gives us the news. Dr. K says it;s time for the orthodontist Four days later, the orthodontist, Dr. M, asks me if D gets sick a lot and if he is a restless sleeper. Yes and yes. Off to the nose, throat, and ear specialist we go. Dr. ENT asks me how often he is sick….. Well, he’s been sick since week two. Again, more to share later. Dr. ENT schedules a tonsillectomy. Our D requires a lot of preparation for any change to his life. We take this serious. As a family, we talked about the procedure days before. We described that the night before he could have with no water, the morning of he could not have breakast, AND we described that an IV that would need to be started for the surgery. “Stop right there I got know right now before we go any further, do you love me” (Yes, Meatloaf was singing in my ear). Oh boy, here we go. We arrive at 8:00 am sharp. We go into the prep room. So far, so good. The doctor comes in and talks to us, especially directly to D. The anesthesiologist comes in and explains the procedure. D articulates that he is nervous about the IV. Dr. A say “No problem, we will use the gas mask to help you relax.” Off to the surgery room they go. After about two minutes I hear conversations from the operating room. I can hear D asking questions and his voice is getting louder. Dr. A comes to get me. I walk into the room. My beautiful blue eyed baby is FREAKING out. I talk calmly. I look at the Drs and the nurses and ask them to give me a moment. D relaxes. We resume putting the gas mask on to start the procedure. He straightens his back, tightens every muscle and looks at me with the most fear you have ever seen in a human (or animal). Oh Jesus, help me. This does not go well. If you have ever been in a situation and you think you need a shot of tequila, a Xanax, and a beach, this was it. We all look at each and the silent nod is one of resignation. Five grown humans, one 12 year old, and two minutes of hell holding him down until he breathes the sweet relaxation juices of the mask. After the surgery, the anesthesiologist informs me that ANY future procedures that D needs a valium. “You think?” Can you prescribe one for me too? Back to the ski lift. I shared with Random Ski Man the story of how Dr. A recently brought awareness to a required need for a sedative before any future medical procedures. He stopped and looked at me and said, “We need to quit asking our unique children to live in our world, but rather live in THEIR world.” Our son, who amazes us with his perspective, lives on a different plane than us. You know those movies in which we all exist but there are multiple layers of our world. Yep, this is D. He lives on one of those worlds. It only includes the love of Dodge Trucks, saddles, horse trailers, horses, campers, and food. His world seldom ventures out of those topics. Ask me about Dodge Trucks and I can tell you more than the “typical mom”. So in the last few weeks, we, as a family, have begun embracing his world just a little more. You know what? It’s fun. It’s peaceful. It’s simple. So the word of advice this week, quit fighting and just embrace what is. I love D’s world. I can’t wait to see what it teaches me. On a serious note, there is a conversation, an awareness, and a call to action around children that were born with physiological differences due to their biological mothers' use of alcohol and drugs. This is happening in our communities, our state, and nation. The statistics are alarming with the number of babies being born. As the crisis in America continues with opioid addiction, we need to be aware and prepare to change our ways. These children look normal, but act very differently. If you're shopping and the child is running through the store while the parent looks on helpless, this is that child. They can’t control it. While many parents being condemned for their lack of discipline, please stop the judgment because there is not a discipline method that will help these young minds. What will help? Expected structure, routine, clear expectations, and education for parents and community members. I'm an adoptive parent with a symptoms most like one of a fetal alcohol syndrome baby. His biological mother decided that 9 months of drinking and drug use was more important than a lifetime of neurological connections that never connect and misfires in the brain. In our journey, I've been fortunate to learn along the way and have resources. Because of my educational background,D has been in therapy for speech and motor skills since he was 18 months old. We have all been in therapy. His journey is our journey. My plea is that we need to come together and help these young souls continue their growth. Continue molding their brain with new connections that take in mind that normal brain function is not an option. Their brains have been forever damaged. While there are levels of severity, most of these children, with support, will be functioning adult citizens and can provide services for our economy that are needed. But most importantly, we need to understand that their learning is different. While it takes a typical student two times of directions to learn a concept, my child and other children like him require at least 10 or more learning moments of direct instruction. Take the time to learn and let's be part of their journey.

Comments

  1. Beautifully written, Ember. And so important for people to know!

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  2. Love this, and it so hits home for me. Any minor change a huge ordeal, Lord forgive us if we have a substitute teacher, and more prayers if she changes something up. Obsession with things the rest of us just touch on, whether it is Nascar fact, movie facts, or just all the different colors in a crayon box, so bright but learns so different. I think we found a nice balance between his world and ours, but I had to live in his a lot to find balance in all of our lives. So glad there are people like you and others exploring these worlds to help us as mothers. I never drank or used or even ate unhealthy during our pregnancy, but still sometimes our children just come seeing the world a little differently, a little closer and sometimes better. All the therapy and reading certainly helped me. Prayers.

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