Maggie's Story

Recently I have been overwhelmed by how many fellow bloggers, Family's and Friend's that have started reading my blog and find something they can relate to in it. I have also received numerous emails and comments asking such wonderful and important questions - And I want to answer everyone of them! But I should probably go more into Maggie's story and how I got to this place to fully answer all of those questions!

February 3, 2006 , 2 weeks before my due date had the most uncomplicated and probably the most by the book first delivery a mother could wish for. I was induced at 2pm and my beautiful daughter entered this world at 6:30pm. All her vitals and testing were normal. She slept well, ate well, was well sized, long and perfect! Baby Magdalaina Elizabeth.

At her 6th month check up, her pediatrician noticed that her head was 2 standard deviations below normal (which I learned was a bad thing later...) She smiled at me and said don't worry it's probably nothing.

At 12 months, My child was visibly behind her peers. As a first time mom I felt it was my fault I wasn't teaching her the way right or I had done something wrong. Maggie's cousin was 2 weeks to the day younger (they were due on the same day) He was walking and making sounds. He was bigger and stronger, his family would reassure me by saying it's just because he's a boy! Maggie wasn't even crawling...

At 18 months my life started to change, Maggie began to crawl, slowly but surely. The state started to do evaluations for Early Child Intervention and to no surprise Maggie failed every test and was recommended for Speech, Occupational and Physical therapy. At that time those words stabbed my heart and made me feel like a failure. Maggie was 19 months before she attempted to walk and it was a very slow, step by step month after months almost 2 years of practicing before being comfortable on stairs and walking by herself. At 23 months she was evaluated by an opthamologist, and he determined that she needed surgery for a condition known as Strabismus (which is common in children with Cerebral Palsy) Almost on her exact 2nd birthday Maggie had her first surgery. I was trying to be calm and in my heart I knew this was a simple procedure. General Anesthesia was involved, her first time. I always thought this happened to other Mom's. Or Perhaps I was being punished. I just knew I was so excited when she woke up and was crying, a good sign of her breathing...

After the surgery it was clear by all her medical physicians that more testing needed to be conducted. At 2 years old she had no words or sounds. Mood swings and meltdowns for no apparent reason. Odd tendencies for obsessive behavior. Mouthing absolutely everything. She ate solid food but small bites and hard to get her to swallow certain textures. She was a good sleeper but I lost so much sleep worrying if she would wake up or not. Going out to public places became more and more difficult. Her eye contact was good - So I told myself it can't possible be Autism... (To me that is the diagnosis de jour, every other kid has that) But I knew in my heart of hearts that something was wrong.

This whole process took a serious strain on my marriage and after that fell apart I moved with this tiny 2 year old back into my parents home to try and figure out how to help her and to give her the best services I could. And If your going to have a special needs child, then move to Minnesota! Within a week I had her into the best geneticist and diagnostic center in the country. We met with the doctors and all the questions were about her history, her development or lack thereof, her milestones, my pregnancy, my life... I was completely honest and trying to remember every detail of what she had done, not done what I did or didn't do and I felt like I was in an interrogation room on one of the cop shows... I took the blame so personally. I still do.

At 2 years 8 months, Maggie was given the diagnosis of Autism with the recommendation for further evaluation. There was a sense of ... Okay now we have a name and we can get services, or when I'm asked about her I can give a concrete answer... but I knew that the next part was going to be the hardest part.

I met with the geneticist and She had several ideas all of which required blood work so we decided that one draw would be better than 5. After an excruciating blood draw she ruled out fragile X, chromosome abnormality, Imaginary Down Syndrome and Cerebral Palsy. Her final guess was Kabuki Syndrome - Which she described to me as Down Syndrome Medically with Autism socially - but to determine if that is what she really has we need to do a CT, Heart Echo & Upper GI Scan - Maggie had already had bouts of diarrhea, constipation, vomiting, blue fingers and turning hot/cold easily throughout her short life thus far. All of these tests made sense and on the surface I said "Yes, whatever it takes!" But in my gut, I wasn't sure if I was ready to know the answers.

Early one morning I took Maggie to Children's Hospital they put her under and escorted me to the waiting room. I was so anxious and all alone. Physically alone yes, but I felt more alone then I had in months... What if they find something? What do I do now? The Doctor came in and asked me to come into the room. Maggie was sleeping peacefully and the doctor told me they would have the results in a few hours. I picked her up and held her so close to my chest and all I could think about was the E. E. Cummings 'I carry your heart with me' poem... I received a call later that afternoon that Maggie did in fact have 2 small holes in her heart that confirmed that she had Kabuki Syndrome and that further tests were required.

This was the beginning of countless appointments, Specialists from Cardio to Ortho, Nutritionists and Therapists from Occupational to Speech. Clinics and School district evaluations. IEP's, IQ tests, Psychological exams, adaptive testing, adaptive equipment (Maggie has In-toeing, Clonis & Hypertension - all connected to the KS) such as her twister cables. I spent 2 years filling out forms, taking her to the doctor, holding her down while they drew blood, crying, meeting other moms in similar situations, & feeling absolutely alone.

For the first time in 5 and half years I feel like I am actually getting somewhere, Maggie is making progress. She is developmentally a 2 year old and throws fits as one. She is a picky eater and we jokingly call her an Italian supermodel. She constantly has a chewy in her mouth (which her SLP has said is a good thing and her drooling has gotten better, not ceased but maybe one shirt a day verses 5) She can point to what she wants which took till after 3. She is opinionated on her music ( she loves Adele, Bob Dylan, & Glee version of Billionaire) She cry's and freaks out if a song is in a minor chord, I believe she has perfect pitch and strong music abilities. She has been riding horses for 3 years and loves it! Her balance is better, her strength has improved and her love of animals is stronger. She loves football! She has 5 signs that she uses consistently and is working on 3 more! She is nonverbal at the moment but she still sounds like a Minnesota Jewish Princess, when she says things like "Oh no!" or "Oh Geess" or my favorite "OY" - reminds me she actually is listening to me...

The past few years have absolutely been the hardest few years of my life and I wouldn't wish this trial on any child or parent but I hope that I am made a stronger person because of it! I don't worry about my child, she is closer to her divine creator than I could ever dream of being :-)

I hope that helps some of you in your journey to come. It isn't easy. It's filled with tears and self doubt but I please ask me questions or just leave your comments I love knowing I'm not alone in this trial.


Mikaela said...

What a beautiful story about a beautiful girl. It is amazing to me how much I can relate to what you and other KS moms are going through. It makes this wonderful, scary, difficult and beautiful journey not seem so lonely :)

Mychael said...

I'm so glad I can help you in some small way!