Hello Butterflies and Beautiful Souls!
My name is Vanessa and this is my Diary. Do you ever notice how time effects you? If someone said, five years ago, I would be where I am at in life. I wouldn’t believe them! Me, the woman who sat in front of a computer all day at work constantly in meeting. Too busy to see the sun shine some days. Even last year, I never would of believed I would be expressing my thoughts and feelings to the world today. Allowing anyone to listen to my secrets. Including the private moments.
Luna, my daughter, holds my most precious scariest memories. Even when she was born, a new mother, the picture taking changing of multiple outfits; to nervous if I’m not doing things correctly. Blaming myself was the easiest way of being when I noticed Luna’s not reaching all her milestones or giving excuses on her late developments. My concerns were noted by her doctor at her one year check up. Waiting lists and concerns weighing heavy on me. Seventeen months when she was accepted into a regional program for her delays. Early intervention and behavioral therapy programs. Twenty two months when she finally received her Autism diagnoses. Too many emotions. I remember dreading that meeting. It’s really hard to sit there and have people, I don’t care about their medical backgrounds and I don’t care about all theirs tests; but to have anybody talk about your child’s flaws. It’s like your already on edge, hair raised, and ready to defend yours. Understand, she’s much more than her diagnoses! That beautiful little girl was just learning things in her own time. In her own way. Still, I didn’t deny it, I couldn’t. I wasn’t one of those parents that lashed out giving excuses.
Even as I drove home after the meeting, watching Luna in the rear view mirror, I just felt numb. By then I was used to her kicking the back of my chair, flapping her hands, and humming. That was my normal. I remember walking into my house, laying her on the bed to change her, and trying to talk to her. I wanted to hear her call me Mommy. Tell me everything is going to be okay, Mommy. Just to hear her little voice. No eye contact. She wouldn’t even look at me or acknowledge my words. I knew then, at that point, it really hit me. Really hit me. She’s Autistic. I just broke down. Silently. So no one could hear or feel my pain. Wiping my face looking down, just in case, for a brief second Luna looked at me.
It’s not the worse diagnoses in the world, but I’m entitled to grieve. To feel. They say you go through seven grieving stages: denial, guilt, anger. etc. Man, I did mine. I was numb for a while, dealing with it, just not talking about it. I’m getting things thrown at me left and right! More testings, early intervention, food therapy, behavioral, and speech. She needs braces for her ankles and myle pods. Hypotonia diagnosis. Weak muscles. Orthopedic specialist. Neurologist. She might be having seizures. MRI. Negative. She keeps getting sinus and ear infection. Ear nose and throat specialist and the surgery is scheduled to do three procedures in one! Tubes, adenoids, and just more doctors appointments. Feeling overwhelmed. Another person telling me Luna’s needs.
On top of that, money for gas. So many parking fees and my car’s now giving me issues. Stranded a few times. Needing one tire and told I need three! My rim’s cracked, so I should probably replace all four and the rims. Stress and gray hair was my best friend at this point. Do you know this is common in the special needs community! How hard it is to face the day most times. I give each and every one of you a piece of my heart. Because I know! You deserve more than just a pat on the back, but a huge hug from me. People don’t realize when you are check marking or filling out on another long form; what truly comes with the diagnosis and all the symptoms. It’s more than just what was written on paper, more than the stares you received just walking into another appointment, and more than someone who had seen your child for fifteen minutes and decided your fate or the next medical date. It becomes a battle emotionally, mentally, and physically. I’m just so proud of you! We don’t give up, we still show up and support our children no matter what. That’s called strength!
I want to say this, some days are really harder than others. My patience can be on a thin line. I’m frustrated and Luna’s just being Luna. She took off her clothes or shoes when I was getting her bag packed. I can’t forget anything. Toys to calm her down. AFO’s Braces for her feet. Paperwork. I’m running late, she has another appointment at the children’s hospital, I have to think about the gas and parking fee. An hour of her kicking my back seat. I’m sweating looking at the time. Parking is horrible. I’m not going to make it! Pulling everything out, Luna’s not helping and screaming. I forgot my phone! Huge mom guilt for getting on her, and then I walked into the Children’s Hospital. Let me tell you, if you’re ever having the worst day in your life; think life isn’t worth living, you walk into the children hospital. Any hospital! The children. Those beautiful children. Their aura’s. I feel their pain. I see their huge smiles just for getting out of their hospital rooms. Sitting in their wheelchairs watching other children play in the garden. The parents hopeful and scared. Tired and exhausted. Holding on to their emotions as people stare. Some become downright rude when they don’t look away. Most full of sympathy and prayers silently sent. Your life. It’s a wake up call, because even on your worst day, most can do a do over. You get to struggle another day. You want to believe there’s always hope! Even for all those children, for all the parents, and even for you! Faith is succeeding. So try to stay blessed!
Butterfly Moon | Priceless Memories, Diagnosis, and Blessings | Seasons 1 – Episode 2
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For me, even after we barely made it to Luna’s appointment; I remember the elevator ride back down. Luna’s stimming in her stroller and humming. You get some stares, because literally the famous quote is “They don’t look Autistic” lol. Autism is a mental disorder. Anyway. I just remember there was a girl in a wheelchair. She looked so pale and sad. Just using her hair as an escape hiding behind it. Head down. I barely acknowledged the mother with her dried tears of mascara running down her cheeks. Privately giving her space. Luna kicked the wheelchair and that beautiful sad girl looked up and smiled at Luna. Luna doesn’t always give eye contact, but she did and giggled. Then I seen it. Her left leg was amputated. My heart broke for her pain and for the struggle she will endure. Deep down watching her smile at my daughter….she had so much life inside her. She’s a fighter! I seen it! Life, man it can be hard. It’s just the cards we are dealt. It’s playing the victim that keeps us down. We need to figure out what role we play. What role do you play?
It took me six months to come to terms after Luna’s diagnosis, and I decided to post out to family and friends on social media on World Autism Day, April 2nd! Proudly acknowledging Luna’s accomplishments and some struggles. Ending it with Autism doesn’t define you my moon! The support, likes, and comments from my family and friends is something I hold as a priceless memory. This year, would have been our 3rd year Walking for Autism! Team t-shirts and all designed with Luna in front supporting the cause! Last year, I had thirty family and friends with our blue shirts posing for pictures when we crossed the finish line! I’m so so proud! You know, I try to embrace it. Show Luna all her abilities to the disability. One day, I’m sure we will really discuss it all. It will never change how much I love her. How I feel about her. I won’t deny our struggles and show her how proud of her I am! We’re a team!
I even joined special needs groups and support pages. Even a few parent group activities with the kids! Nothing like a birthday party full of chicken nuggets, gold fish crackers, and pizza! Lol. It keeps me connected and Luna to be accepted with friends. Even when she’s at the top of the slide, and this girl take off her socks one at a time; sliding them down. We all can laugh, because she’s not the only one!
My heart hurts to say this. In the special needs community, do you know how many of our children that don’t get invited to birthday parties? Even to have children show up to their little parties. It’s harsh! Children lead by examples! Parents, show compassion! Teach your children to accept all abilities. Have a talk with your children. That birthday boy or girl, with a heart of gold, is inside crying not understanding why your child hates them! Parents dying inside trying to explain with excuses. Please open your mind and hearts and talk to your children. I worry about Luna’s future. Her social skills aren’t the best. At this time, she doesn’t understand, but we’re working on it. This pandemic halted our plans, but we got goals! Even though I’m blessed with a big family, and she’s got little cousins to make up for it, I want her to have a little best friend too. Every parent wants their child to be accepted.
Luna will be turning the big FIVE in a few weeks! I really wanted to throw her a big bash. She deserves it! She’s really came a long way, still more to come, but we take it day by day. Better to be safe. After being totally non-verbal these last four years, my baby is starting to communicate more. This year has had many challenges. Even for my health. Yet, Luna is calling me Mommy. Pointing, more words and even some sentences! No more orthodics (AFO braces) and buying multiple sizes of shoes! Sleeping and eating is a work in progress. She loves Barbies! Before she couldn’t handle the hair. Sensory issues. Now I’m having to change barbies clothes all day! Lol. Luna is always, my moon, is a happy girl! She gives the fiercest biggest best hugs. Kisses too! I’ll be here for her sixth birthday! Brain tumor and all! That’s why I say I’m blessed! Time is definitely on our side. Most days at least. After this year, we all should remember why we can’t waste it! Victims become survivors. Time heals wounds. Inspire to be inspired. I hope you make someone feel special in your life. Remember, the best gifts are free. Smile from your heart!
I will too!