When Annie had her first seizures, prior to diagnosis I remember how terrified I was, how unprepared and inadequate I felt to be her mom. I remember being in the hospital and asking them if we could please stay, I didn't feel comfortable bringing her home and caring for her. I remember asking Scott to stay home from work, I was so scared to be alone with her, fear that something may happen and I wouldn't know what to do. When Annie was finally diagnosed with Rett Syndrome we had no idea what it was or how in the world we would be able to take care of a medically fragile child with severe special needs. Just the thought of it brought me to my knees with not only grief but shock and a feeling of helplessness. Quickly after diagnosis we visited doctors to try to figure out just how to care for this very special child. We were hit with negative, futile thoughts and suggestions. We quickly retreated to care for our baby, free of the negativity in our very own home. Scott and I empowered ourselves to be Annie's "primary care" and "second opinion". We did have Annie in therapy and we clung to our therapists, we worked hard with them learning all that we could about Annie and how to work with her to help her to keep the skills she had and even start to learn new ones. Thankfully we were blessed with amazing therapists that just loved Annie - many we still work with today and we consider them almost as close as family.
Once complications arose we were forced to start to looking for a specialist to help us with Annie - it was bitter sweet. We did find someone who was positive although they offered little help. When more complications arose we added more specialists and found more of the same - not much help. Over the years we've seen dozens of therapists, specialists, teachers, and professionals. Some have been helpful, others - not so much. Some have been incredibly positive, other's extremely negative. Some have had huge impacts in Annie's life and wellbeing, others have come and gone so quickly we hardly remember. Some have had such a profound understanding of Rett Syndrome and Annie that we clung on their every word, for other's we have been the educators teaching them about our angel. Needless to say for the past few years we have had quite an education from others and have educated ourselves as well by spending countless hours on the internet researching everything there is to know about Rett Syndrome.
We've been going through a lot of changes these past few weeks, Annie's not feeling well again and we are at a loss. She is also moving from preschool to kindergarten and we are getting a lot of new people to work with our little Annie. One thing that I have been learning through this 4 year journey is that we are all just people. We are all just trying to do our best. To think that someone has all the answers because they have a million credentials behind their name is unfair and to think that another has nothing to offer because they are still a student or because they have never worked with a child with Rett Syndrome is also unfair. The only way we are going to get through this though life, the only way we can provide the best for our daughter, educationally, medically and physically, is by forming relationships with the people on our respective teams who love and believe in our daughter. Collaborating, brainstorming, compromising and listening to each other is the only thing that is going to allow Annie to be the healthiest and best Annie she can be. As long as we can find that relationship with the people who help us with our special little girl we will be just fine.