My Miracle Julia Jai

This is a story about my special needs daughter Julia. She is 9 now and has been through more than most adults in her short life.

I have a miracle in my life and her name is Julia aka Juj.

  Looking at my little girl you would never guess that she is missing an entire part of her brain along with other Neurological issues, has bipolar, epilepsy and adhd, and has been clinically dead and on life support twice since she was 2 years old.

  Juj has physical impairments that are like someone that has had a stroke that affected the right side of their body. She wears a brace to keep the leg and foot as straight as possible. Her arm turns inward and her hand as well.

  All I see when I look at my beautiful daughter is her light and her joy of life and when I hear her singing to her ponies my heart melts.

   Juj has been through so much in her life. When she was 7 the bipolar got the best of her and I had to commit her to a children's Psych Hospital where she spent 8 days away from me. It broke my heart.

   We have struggled with medications over the years. At one point she was 6 years old and so over medicated she was like a zombie and they could not even work with her at school. Now she takes one medication for the bipolar and has one for times the bipolar is out of control.

  The physical issues have worsened in the past 2 years and hearing that wearing the brace will cure nothing and this is for life was more than hard for me. Juj took the news like a champ.

  Juj has made it to the 3rd grade but testing her is difficult at times and I have a " Team" at school from her teacher to the social worker and on and on. Juj has her own " para pro" aka one on one helper. Everyone that works with her must know CPR and knows if she has a seizure she goes into status which means she stops breathing and her heart stops.

   I am her advocate which means I do the work with her IEP and the school district. I have meetings that last 3 hours, we brain storm what is the best way for Juj to be able to advance and succeed in school. 

  I have to go from the happy Momma on the first day of school to finding my reading glasses and asking for a copy of the legal document called an IEP.

  Juj has more Doctors than most will have in one lifetime. A Pediatric Neurologist, Orthotics specialist, Psychiatrist, Therapist. She loves them all.

  We try to raise her as we raise all of our children. My Mother told me that I could not raise her in a plastic bubble and we do not.

  Sometimes it is very hard to watch her sit and cry and tell me how she hates having bipolar and she wishes she was like everyone else. It's hard to hear her ask me if she will ever be able to be in a regular classroom like the other kids and the hardest is when someone makes fun of her trying to explain why some people are ignorant and do not understand what she is dealing with. 

  Yes, People can be cruel and say the most ridiculous things to me.

 " Is she retarded? " What did you do when you were pregnant to make her like this" Some point at her and stare. Sometimes it is too much for me to take and I stare back and ask them if they have a problem. 

  I used to be angry about it and say it was all unfair that she has so much on her plate.

  I used to blame myself but no more.

If I had known she would be this way and have these issues before she was born I would have had her regardless.

  She has taught me so many things and has many more to teach me I am certain of that.

  When someone tells me they are sorry after I explain what she is dealing with I tell them " Why be sorry? " She is amazing and wonderful and beautiful and talented. I thank God for giving me Juj. I don't know what I would do without her. She lights up the room when she comes in and she lights up my life every single day.

  My Mother said as Juj lay on life support " God made her this way for a reason and some day we will see what that reason was" She is strong and will wake up soon " My Mother was right. She did wake up and I am beginning to see that purpose, to touch hearts and change minds that believe children like Juj are less than what they really are.

  As I helped her out of the car this morning I looked into her beautiful eyes that are the same color as Elizabeth Taylor's were and kissed her forehead my heart was full of joy and love and I was so grateful that I am so blessed to have my Juj.

  I drove away singing our favorite song by Jason Mraz. The same song we sang in the car on the way there. I smiled thinking how blessed I am.