Fiona Midori King

Fiona Midori King

Hope 4 Fiona

4 Pieces of Advice

 

 

 

Paxton and I learned a lot through this journey. There is no set of directions, no road map, nothing to follow.  All we can do is continue to put one foot in front of the other and do our best. We want to be certain to share with other parents, who have also had their child diagnosed with GM1 or any other rare diseases that you can and will get through it.  Here are some of my suggestions for any parent who is finding themselves in the same position as me.

1. Educate yourself! The more you know about what you are going to face, the better you can face it. We coped with Fiona’s illness by educating ourselves about GM1.  Paxton searched the internet and read as much as he could about the disease, took notes, printed out copies of various literature, kept copies of Fiona’s medical records close by (organized on our kitchen island for easy access when writing letters to our insurance).  We met with all the doctors involved with Fiona’s care and we asked a multitude of questions. We also sought out other parents and not just health care providers for answers. The more we knew about the things Fiona was going to go through, the better we felt about helping to care for her.

2. You are your child’s best advocate. You are going to know what’s best in most cases and you will work harder than anyone to get them what they need. I know Paxton read our entire insurance policy. I think he could probably submit and approve all of our insurance claims himself. Do not hand over your child’s well-being to anyone. That little person is your responsibility. Everyone thinks they know what is “best” for your child, don’t listen to them, you are the mommy and daddy and YOU know what is best for your child. Listen to your gut instinct; it will rarely lead you astray.

3. Your faith will be tested so hold on tightly to it. At the beginning of the journey, I was always worrying, wondering, fearing Fiona’s future, but I decided that I couldn’t live like that anymore. It all comes down to your faith and trust in God. I learned to look to God for strength, guidance, love and peace, rather than an immediate answer to my prayers or a cure for Fiona’s illness.  Understand the parts of the process that you are in control of and manage them well.

4. Ask for help and surround yourself with people who are positive and supportive. Ask for help if you need it, especially in those early days where everything is new and frightening. There are wonderful people out there ready to help- family members, friends, church families, neighbors all you have to do is ask. Paxton and I are so blessed to have so much love and support from people around us.

 

 

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