Fiona Midori King

Fiona Midori King

Hope 4 Fiona

Early Intervention - Sunday April 8, 2012

 

 

 

 

It’s amazing the things you learn when you have a child diagnosed with a rare disease. I had no idea what the term “early intervention” meant before Fiona was born…and did I learn quickly that it’s an imperative part of her development. Early intervention is programming consisting of therapy sessions, activities and exercises to help address the delays found in individuals with special needs.

 

Our next step was to get Fiona evaluated so that we could begin this early intervention process. Fiona was evaluated and she qualified for the program. We were then paired with a Service Coordinator, who put together a team consisting of physical and occupational therapists, who further developed a plan for Fiona that will lead to the best possible outcomes for her development. 

 

Fiona’s physical therapist’s name is Megan, and she comes to our home once a week to work with Fiona. The rest of the week, I am the one who takes on the responsibility of working with Fiona, doing all the different exercises with Fiona that Megan has shown and taught me. I always do my best to try and make it fun for Fiona because she doesn’t seem to enjoy it very much. I try to incorporate the therapy into as much of our day as possible. I find ways to sneak it in here and there during meal, play or bath times. The amount of time spent on therapy varies from day to day. The first therapy session was terribly difficult to have to watch as Fiona’s mother. Fiona was screaming and hollering at the top of her lungs begging for the exercises to stop and the session to be over. The absolutely only thing that made it bearable to watch, was knowing that Megan was a trained professional who knew better than me what was best for Fiona. In fact, I needed to trust Megan with Fiona the way I need to trust God. At times we may question why God chooses to put us through such pain in our lives, but we must believe and trust that as our Father, he is always doing what is best for us. Isaiah 41:10 says, “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." I have found that this is way easier said than done! I have found it extremely difficult at times to truly trust that any good can come out of such a painful experience. Knowing that my first and only baby girl may not see the age of two has been the most difficult experience I have ever gone through thus far in my life, by far…..

 

I think back when I was carrying Fiona in my belly. I recall all the thoughts and wishes I had for what I wanted to be able to provide to my daughter as her mother and what Paxton and I would be able to provide to her as her parents.  I would imagine things such as what my baby would look like, whether the baby would like more like Paxton or me?  I had so many hopes, dreams and wishes for my little girl as she grew up. I wanted her to do well in school and excel at an activity that she found interesting and enjoyable. I wanted her to be passionate about life and respectful and loving towards others. I wanted for my baby the same things that all parents want for their child. But when Fiona was diagnosed with GM1, I realized I wasn’t going to have that normal experience of parenting that most parents get to enjoy.  Never once did I think that I was going to have a baby that was diagnosed with a rare disease that could very quickly take her life!  All I think about all the time is Fiona. I know that God will provide Paxton and I with the strength, courage, and love necessary to raise her the very best that we can, no matter what obstacles come our way, we will get through these tough times as a family and we will do it day by day. Whether Paxton and I have the honor of parenting Fiona for much longer or not, we are proud parents of our little angel and nothing will ever take that away from us, not even this awful disease….

 

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