Life after the Birthday Bash

So where do we go from the 30th birthday party? It’s important to backtrack for a moment. I don’t ever want to forget what my daughter was like! Rachel could not maintain eye contact so when she spoke, she closed her eyes. If I were present she would look at me while she spoke to you. Walking outside of our home, swimming, having friends these things were no more. Her speech often was unintelligible.

Let us continue…so after her birthday party extravaganza practice began for the May dance recital. We are in a grove her days are full of exercise and friends. The old adage Nothing success like success is true. I have seen some of the dances they will be performing but there is one dance Rachel is dedicating to me and I am not allowed even a single peek. We are sitting in a Blow and Go getting the princess beautified about an hour and a half before the performance and Sarita calls to ask Rachel to dance the Fox trot with Marcus even though it’s not perfected. I have to pinch myself there is Rachel eager to comply with her request not nervous and quite self-confident. (Thank you God is my Mantra)

My dance is next and the song they have chosen is one of my favorites, “A Thousand Years” by Christina Perri. Although they have a serious routine, part of it is a parody of Rachel falling. After her birthday when we realized this dancing thing was not going to end anytime soon we surprised her with a custom-made sequin dance dress. This is the first time she is wearing it. dress. The first fall is fine and they both get up easily but the second fall Rachel cannot get up because of the dress. At first the audience thinks this is on purpose and there is laughter but soon everyone realizes the trouble she is having. Silence ensues except for her terrified voice and sobs. Sarita and Rachel bend together and hold each other until eventually they both get up to wild applause and cheering. Many tears are falling including mine. At the conclusion of the show the younger girls are coming over to hug Rachel they are gathered on the floor around her and begin to give her their roses. What an Unbelievable magical life.

The following is a text sent to Sarita after the recital form a student’s mother:

Good Morning Angels! I am still so emotional from yesterday. What an amazing event you put together! Words cannot describe how grateful I am for my daughter to be able to experience the kindness and love that the two of you have! Rachel and her family are inspiring and so beautiful and what a privilege for Jillian to be part of it. While Rachel was difficulty getting up I looked over to Jillian who was standing there, tears dripping down her face! Yes, my 8 years old was crying! Then at the end she walked over and gave Rachel her rose and told her how proud she was of her. Next, her friends started doing the same thing. I cannot express the feelings I am feeling, so let me just say: THANK YOU!

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The powerful of the words I AM

Before we began this adventure Rachel’s I AM was nonexistent, she was invisible. Now I hear her talking to people and she is saying I AM a professional dancer and artist. This is definitely an inside job with divine assistance. My heart hurts but now from joy not pain. Our life today is full of miracles. I have come to realize that I don’t know anything about the future. I could never have imagined this path and I have no idea how far she can go. I am happy to sit back and watch and do what I can to help the process. Rachel may be able to dance the tango but she still can’t walk down the street. I am happy just the way things are.

Up next on Rachel’s agenda is to dance in ballroom competitions. These God’s stories are quite the page-turners. Two specific competitions are under investigation. The first is this October Naples Florida and the second is in December in Las Vegas. Already I am hearing about choreography and designing clothes.

There is just one obstacle, which is funding this venture. I have a chance to take a leap of pure faith. My friends are helping me with to create a fundraising campaign. Were making a video and writing letters. I will keep you posted with each step in this saga. I hope to capture the hearts of donors and I want to invite everyone along with us to the competitions. Every family has its problems that seem unsolvable and some are similar and some are not but what has happened for us can happen for anyone. We are not unique. We just did something different than what we always did this time.

some pictures of the family

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Meaningful coincidences

I believe that all coincidences are meaningful. Sometimes what appears to be a random event is actually the key needed to find an angel.  Therefore finding this next angel in Rachel’s life by way of listening to a talk on You Tube makes perfect sense.

Renee Chillcott, owner of the Brain & Wellness Center in Boca Raton, Florida came into our lives one day because I wanted to listen to something on You Tube at work. The woman who changed her brain by Barbara Arrowsmith-Young caught my attention. Barbara was born with a deficit in her brain which caused many problems in her life.  Barbara’s talk became relevant for me when she discovered that she could overcome her difficulties by training her brain. She used words like neuroplasticity and brain training. Unfortunately her program and school are located in Canada. So I goggled neuroplasticity, brain and Boca Raton and up came the Brain and Wellness Center. Renee is the Clinical Director of Neurofeedback therapy and a Licensed Mental Health Counselor at the center. She is dedicated to helping people and it shows by her altruistic actions. Renee founded the Autism Angel Network to help those families and individuals living with autism to get services and interventions not readily available to them.

What is heck is this all about then one might say……I copied and pasted from the website so as not to confuse you.

“Neurofeedback is an innovative technology which harnesses the brain’s neuroplasticity – its ability to change itself – in order to bring about improvement in a variety of symptoms which can interfere with life satisfaction. This non-medicine approach trains the brain to function optimally, thus improving attention, mood, learning ability and more.”http://bocabraincenter.com/

Rachel has been going religiously for over a year now and the benefits are evident. We know that the quality of her life has improved . Additionally the training has accelerated all the wonderful changes in our daughter’s life. Most importantly Rachel believes and without this nothing can be effective.

Another amazing angel is Maria Saranceni.  She is an incredibly gifted artist and teacher. But her story is for another day.

“There is no order of difficulty in miracles” A Course in Miracles

From Palm Tran Connection by wheelchair spending days in a sheltered workshop. From calls about her falls, to a visit to Virtuous Productions. From mundane to miraculous.

Two steps  forward one  step back. Head down, leaning against the wall, tugging at her chest. An all too familiar position of hers. From barefoot to dance shoes. From the wall to waltzing. And when she freezes Sarita is a breath away, holding her until she is once again able to move.   From the small studio to the main studio. From the wall to traversing the entire studio floor. Practice, practice,  practice and a single dance step turns into the tango. When Rachel walks through the door to Virtuous Productions she is transported to a new reality where she is a professional dancer, an accepted member of the studio and a friend to many. Nothing has to make sense in this and Gods world but everything is real and magnificent.

Rachel and Sarita difficult moment
Rachel and Sarita having a difficult moment
All this practice took on direction after we decided to have her 30th birthday extravaganza at the studio. Little did I know that Rachel and Sarita had planned an entire dinner dance show. All our friends knew Rachel for a long time and were familiar with her difficulties. So when Rachel and Sarita began to dance it was to a crowd of utterly amazed guests. The first dance was a depiction in movement of her freedom from the wheelchair to the song I Look to You by Whitney Houston. In the corner sat Rachel in her wheelchair, head down.  From across the room, Sarita approached her, circled her once, came to the front and lifted her arms. Together they reached  toward the heavens and began this breathtaking performance. We were witnessing a miracle, and when it ended there was not a dry eye in the room.

These are texts we received after the party:

Thank you for inviting us last night How lucky to see a miracle right before my eyes. I love you guys God bless thanks again. I’m having a great day because of last night. A lot of fun 

Tommy beck

Thank you for having us last night. Being a part of Rachels party and being witness to all the beauty in her dancing and to see all the hard work she most definitely put into it was Truly a gift for me and Olivia. Thank u Thank u Neila..Rachel..Sanford……….Sarah and Max
Charlie Posner 

Last night I had the honor of witnessing a miracle of love and devotion thank you Rachel Neila sandy max and Sara 
Robyn Berman 

Hi Neila thanks again for a wonderful time you have a beautiful family and we are sure you are very proud of Rachel. What an achievment for her she did a marvelous and emotional performance. thanks again for letting us be a part of it. Address 
Frank Leah and Julie Fin

It was so wonderful to be witness to the love and joy Rachel’s 30th brought everyone. We were all so fortunate to be part of this miracle!! Will talk with Sandy about Rachel’s appt. Mazel tov on Max’s becoming an Esquire! You and Sandy have so much to feel happy for..👏Anita

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“Dancers are the athletes of God” (Albert Einstein)

Why dance?  We had travelled so far and come home to find the answer in the most improbable place. God has quite a sense of humor. Everything we thought impossible becoming possible.

“Dancers are the Athletes of God” Albert Einstein. This quote is on the wall of Virtuous Productions, where Rachel started taking ballroom dancing lessons right before we left for Minnesota.You might be asking why we would do that.  We were afraid for her health because she really did not move. After we had gone through all physical activities we thought she might be able to do, Rachel reminded us that as a young child she loved ballet lessons. What could we lose by trying!

In the beginning, Rachel needed the wheelchair to get from the car into the studio. I am not sure if I can accurately describe this journey of transformation taking place in our daughter’s life. I now know miracles happen every day; I just could not see them. There has never been any mental or physical therapy, nor any drug that could affect any long lasting positive results for Rachel. We have searched long and hard. The month of May 2015 marks the one year anniversary of Sarita (Sarita Escobedo is the creator of Virtuous Productions) and Rachel’s magical adventure. As you will see in this and future posts Rachel is healing physically, emotionally and spiritually.  In a world without a higher power none of this would be possible.

It was early on, when Rachel froze in fear. From past experience I was sure she would never come back to dance, and I didn’t expected the dance teacher to even want her to. A situation like this is too much for most people. It always had been. Sarita pulled up a chair so they were sitting very close to one another – face to face. For the entire session Sarita quietly held her, let her cry, talked and prayed with her, and just listened. The depth of my daughter’s fears are great and were almost palpable in that room. This was the first time that a veritable stranger did not shy away .In fact Sarita actually walked head on into Rachel’s fear and began the process of changing it. We all experienced the intense energy in the room and it seemed like time stood still. Not a single disturbance for the whole hour. No one walked in, the phone never rang. Sarita stayed engaged until Rachel felt released. Everything started to change. The moment had definitely passed. We had been so connected it took a minute to come back to reality. Although not the usual communication, it was loud and clear that Rachel had been heard. When we left I began to doubt what we had experienced but, I had no reason to fear. This would not be the last time.

One quick story – Every Monday we eat dinner out with Nancey. Last night was Carrabba’s, we had not been recently. When our server Elyse came by she asked who was missing, where was my daughter? We thought she was referring to Sara my other daughter and then we realized she meant Rachel. Where was Rachel?? She was sitting right in front of her but could not recognize her. “What a miracle, the power of God is amazing” was Elyse’s response. Rachel told her about her dancing career and her art work. We exchanged phone numbers with Elyse because she wanted to be kept up to date all the exciting events unfolding in Rachel’s life.

nancey and rachel at dinner

The Answer

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Ten days of doctors, tests, and follow up appointments in neurology, psychiatry, genetics, endocrinology and more. We were anxious and easily overwhelmed. I wanted so much for an answer that would help our lives and future. Rachel’s anxiety medication had stopped working for her. If anything bumped into her wheelchair she was so startled she almost flew out of it. We had been searching for twenty years and in reality there were never any answers. I had that terrible feeling that this would be the result yet again. We had decided to give this process one more chance and the Mayo Clinic is the only facility that can evaluate a person in a short period of time , do all the tests and share results. If there was anything that modern medicine could find and cure, this was the place. Test results can be viewed daily in the online patient portal daily. My fear of finding no real answer started to become a reality. But Sandy reminded me that no answer is an answer. It was well over a month till the genetic testing results were back. It certainly contained more information but nothing new. We were ready to let it go. While in Rochester we visited the Center for the Spirit, located within the Mayo Clinic.

“We must not forget that happiness is a state of mind, not necessarily of body, and that life is what each person believes it to be. The sick man needs faith, faith in his physician, but there comes a time when faith in a higher power may be necessary to sustain his morale.”

Dr. William J. Mayo

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God makes no mistakes – A miracle story

God makes no mistakes – A miracle story

This blog is a chronicle of a miracle unfolding in all our lives. Our middle child Rachel was born with a genetic abnormality which over the course of her life has manifested in many destructive ways. She has never been comfortable in our world. loud noises, bright lights, sudden movements, patterns on a floor, crowded places can all trigger a severe startle response which some describe as a myoclonic seizure. Additionally Rachel has been diagnosed with autism, learning disabilities and obsessive-compulsive disorder. Doctors find it easy to diagnose almost any disorder because so many describe her. Rachel’s falling has resulted in traumatic injuries which include and are not limited to broken bones, bruised spine, and trauma to her head and face.

Over the years Rachel seemed to be losing the ability to do certain physical things she had done effortlessly a decade earlier. So in 2014 the year she turned 29 we found ourselves wondering if we had missed something and what could we do to help improve the quality of life for all of us? Was she regressing due to her genetic abnormality, would this continue till she had to be taken from bed in a lift?

All of her falling began with the onset of puberty. It was like suddenly a switch was turned on from one day to the next and no one could turn it off again. Could the hormonal and physical changes in her body have unleashed some mutant gene of destruction? One month before we moved to Florida (1994) Rachel began to fall. As soon as we moved we began with a group of neurologists from The Miami Children’s Hospital and the searching for help has never stopped. Before the switch got turned on Rachel had no trouble running up and down the stairs with her siblings. She was an award winning swimmer in the Special Olympics and a strong runner. In high school Rachel rode the full sized bus to school. Now she was in a wheel chair anytime out of the home, unable to climb stars she had to be lifted by electronic ramp into a minibus when traveling on public transportation. Our beautiful Rachel was no longer physically recognizable. She had broken her nose so many times we lost count. Multiple stitches to her skull. Spine injuries, broken clavicle and foot. Her forehead was grossly misshapen because she had fallen so many times in the same spot. The scar tissues from all the stitches were never going away. Rachel looked like she had some type of dangerous growth growing off-center on her forehead. Her once perfect nose was misaligned and full of scares. It was a miracle she had not already become permanently damaged from a brain hematoma. Rachel was now obese, unhappy and lonely with really no place suitable to spend her days. Facing the reality of this situation we needed to answer that nagging question, was this regression to be permanent? Would she was lose the ability to ever walk unaided and was this all due to her genetic abnormality?

I grew up with some thoughts that I accepted as facts. A set of rules to be followed in case of emergencies so to say. One such thought was that a doctor will have a cure for whatever is wrong. One caveat before I take you with us on our trip to the mayo clinic in Rochester, Minnesota. I do believe we benefit greatly from all the advancements that have made in science and modern medicine but sometimes something more is needed. The great news is that we did get an answer to our question but not how you might have ever imagined. Over this year Rachel, Sandy and I have had our grief turned into joy as we have come to understand and believe that God Makes No Mistakes EVER.

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Claim Your Wings

“To me the butterfly teaches the most important lesson that we human beings ever have to learn. You all know her story. She lived what seemed to her a very long time as a worm – what we call the humble caterpillar. Now the life of a caterpillar could be taken as the very type and symbol of restriction. She lives on a green leaf in the forest, and that is about all she knows.

Then one day the little caterpillar finds certain strange stirrings going on within herself. The old green leaf, for some reason, no longer seems sufficient. She becomes moody and discontented, but– this is the vital point – it is a divine discontent. She feels the need for a bigger, finer, and more interesting life. Her instinct tells her that where there is true desire there must be fulfillment.

And so the wonderful thing happens: the butterfly emerges beautiful, graceful, and now endowed with wings, and instead of crawling about on a restricted leaf, she soars above the trees, above the forest itself – free, unrestricted, her own True Self”

Around the Year with Emmet Fox, April 15 Claim Your Wings