This is a site where parents can connect, read reviews on products, learn about new therapies, find resources for themselves and their special needs child and more.
I am a mom who is going through many emotional and spiritual journeys and transformations right now. This is where I want to share them with the world and hopefully help others like me on journeys too.
The purpose of this Blog site will be to help parents of special needs children connect with each other and also to find resources for themselves and their children. I plan to provide real life experiences and reviews out here and encourage you to check in frequently for new posts.
I would like this site to be an open forum where parents can feel free to post comments about things I write about or products that I have listed out here. I am a mother of two beautiful girls: Emily age four and Isabelle age 19 months. Our daughter Emily is challenged with intractable multi-focal complex partial seizures, cerebral palsy with hypotonia, cortical visual impairment, global delays, gastronomy tube, and reflux. We have taken Emily to many traditional Western medicine doctors and specialist as well as many Eastern and non-traditional specialist. I plan to provide those stories and their results out here. We have also tried and own many medical equipment pieces and I plan to Blog on them as well.
Thank you for finding us and I hope that you find this site helpful!
Hello - I am please to announce my new web site that is geared towards parents of special needs children. I plan to continue to add to this site as my knowledge base grows. Please check it out and book mark it - Thanks!! http://www.specialparentconnections.com/
Oh, where do I even begin? Being a parent is definitely the hardest "job" I have even done. I always wanted to have children and thought that it couldn't be any harder than babysitting - right? Boy was I ever wrong. No matter what your child's challenges are it is difficult. I have people say to me all of the time "how do you do it, how do you survive the constant roller coaster ride, the lack of sleep, the unknown?". I say to them, "you just do it". I could give up as a parent and turn my child over to foster care or make her a ward of the state or even institutionalize her, but what good would that do? I am still her mother and would long for her, to hold her, to try to make things better for her, to love her unconditionally.
In our house each day is a new challenge. Our daughter, Emily struggles with intractable multi-focal complex partial seizures (wow that is a mouth full). What that means in laymen terms is that her seizures are not controlled by medication. And what that means to Emily is that she has to take five different seizure medications plus the Vagus Nerve Stimulator (VNS) that she has implanted in her chest and neck for seizure control.
In addition to the seizures Emily struggles with cerebral palsy (hypotonia), global developmental delays, cortical visual impairment, gastronomy tube (g-tube) and major sleeping issues. The cause for all of Emily's struggles is still unknown. She has gone through literally hundreds of tests to try to find a reason for her seizures and everything else. Nothing has been determined on a metabolic, genetic, or any other level to point to the reason for all this chaos in her brain and body.
Just like parenting our second child, Isabelle, Emily has her ups and downs. Some days I even feel Isabelle is harder to parent than her sister. Since Emily's diagnosis is consider idiopathic (no known cause) it makes it even harder for us to figure out how to treat things. We have no way to predict what she will be able to do or not do in the future. So we have to hold on to our hopes and dreams of what we want her to do. We have to stay positive and remember that life is like a roller coaster and is full of ups and downs no matter if you have medical struggles or not.
If you are a parent of a child with special needs then you know what I am talking about here in this blog. You also need to know that you are not alone in this battle and there is at least one other person who gets your pain. I have never said to myself "why me, why Emily". I have though be sad and even angry at the situation and sometimes even at her. This anger is normal and acknowledging it is part of the process of dealing with a child who's life is not what you had hoped it to be. Anger is not okay when it is directed at the child. I know that I said that I sometimes am mad at Emily, but it is more because I can't understand what she is going through and that upsets me.
Having a child like Emily has been a great blessing too. Without Emily I would probably still be on the same path in life I was before and not liking the career path I had chosen. Emily has opened my eyes up to the world of possibility and I have learned from her so many things. I don't have to remind myself how lucky I am to be Emily's mom. I know that she is here for a purpose and I am honored to be a part of that journey. When I think of Emily I here a song in my head. The song is called "In My Daughter's Eyes" by Martina McBride:
In my daughter's eyes I am a hero I am strong and wise and I know no fear But the truth is plain to see She was sent to rescue me I see who I wanna be In my daughter's eyes
In my daughter's eyes everyone is equal Darkness turns to light and the world is at peace This miracle God gave to me gives me strength when I am weak I find reason to believe In my daughter's eyes
And when she wraps her hand around my finger Oh it puts a smile in my heart Everything becomes a little clearer I realize what life is all about
It's hangin' on when your heart has had enough It's giving more when you feel like giving up I've seen the light It's in my daughter's eyes
In my daughter's eyes I can see the future A reflection of who I am and what will be Though she'll grow and someday leave Maybe raise a family When I'm gone I hope you see how happy she made me For I'll be there In my daughter's eyes
So when life is hard and you are feeling beat down by all of your challenges as a parent, remember it will get better. You have been chosen to be the parent of the special child and you are not alone on your journey.
The information in this web site is based on personal experiences and is only to share information. I am not a medical doctor or expert in any area other than knowing my child and how she has responded to therapies and products. I do not endorse any one person or product in this web site for money. I am simply a parent on a mission to provide the best quality of life I can for my child and my family. I encourage you to do your own research before trying anything listed on this site. Remember that it is very important to always have a medical doctor involved in anything that is considered complimentary or alternative therapy. None of these products or therapies are meant to cure or replace your current program. In the event of an emergency please call 911.