Jolly Holly and the New Su Review

Su and my daughter, Ashley, have several things in common – dark, curly hair – a seizure disorder – and Moms who think the sun rises in their eyes! I’m sure you will enjoy meeting Holly and her beautiful daughter as much as I have.

Tell me a little about yourself and your family.

Hi, I’m Holly. I have 3 children and my pastor is my husband. We live in a big state with a small population in the mid-west United States. Our town is small but not as remote as some.

My kids are so close in age they might as well be peers; from Sept. to Dec. their ages are right in a row, this year it’s 9, 10, and 11 years old. Su is my middle child and she attends public school because even the limited services she receives in our small town are better than those she would be entitled to if she were homeschooled (none). I’ve homeschooled my other two kids for their entire education; this year is my 7th year homeschooling and I have finally begun to ‘feel’ like a teacher… which is a sensation I am reveling in with great joy.

Tell me more about Su’s disabilities. Did you know when she was born that she had disabilities. If not, how did you feel when you discovered it?

Su is diagnosed with Pyridoxine Dependent Seizures. Our first indication of her disorder was when she had her first seizure at 1 week old. Her actual diagnosis is a miraculous (and long) story that I have blogged about on her site.

We didn’t even begin to realize that Su would have developmental delays associated with her diagnosis until she was a year old and it has only been in the last two years that we have come to understand that she has, and will have all her life, significant mental handicap.

We’ve been through the whole range of coping emotions on this journey of discovery. We spent most of her life (roughly the first 8 years) expecting something of a ‘full recovery’ so the most recent revelation was the most difficult for us to process as it totally rearranged our expectations for her future.

You blog a lot about Su’s issues, and that is so valuable to me and I’m sure, to others that read your blog. How did you go about making the decision to blog about her? What do you personally get out of blogging about Su and her issues?

I started bogging about my family mostly as a way to keep extended family and far away friends updated on our life. It didn’t take long for me to become addicted to the community. I feel like I’ve discovered something of a support group inclusive of all my goals and interests not only as a parent of a special needs child but also including my faith, and roles of wife, mother, and homeschool teacher.

I began to blog about Su more specifically and individually in her own blog partly to become a more active part of the special needs online community. But I’m really very new to blogging in general and have only been blogging about Su for a couple months, so I still have a lot to learn.

What is a typical day like for you and your family?

A typical day for our family is very carefully organized; not only for the sake of Su’s needs (transitions stink!) but also so that we can successfully fit homeschool in. Su’s emotional needs are intense and she requires a lot of attention and supervision when she is not at school.

Since her school hours are very limited this leaves a large chunk of the day where I am trying to meet her and her siblings conflicting needs at the same time…which is not impossible but certainly requires a strict schedule, and a lot of prayer.

I’m not naturally gifted with organizational skills but that is one of the many areas God has used my special needs child to reshape me for the better! I actually have a schedule, broken down in some cases in 30 min. increments, posted on the wall to keep me (and anyone else who’ll look at it) on track.

How has Su’s disabilities affected you as a person and as a mother?

I’ve heard it said that ‘only special parents are given special children’; I don’t think that’s true. I think we become something special as a result, but I know for sure I wasn’t anything special as a person or a mom before I had Su.

The ways I’ve been affected are too numerous to detail, and every change in me has been worth it. Most importantly I have learned that I need to embrace those changes instead of fighting them and lean on my Heavenly Father’s strength, trusting that everything comes from His loving hand to be used for His good purpose. I’ve drawn closer to my Savior in ways I do not think I would have otherwise ever learned that I could.

What did you do right? What do you wish you had done differently?

Like every mom I have a long list of regrets. But when I honestly take them out and look at them squarely, instead of letting them hover and hound me, I invariably find that there is nothing I really could have changed even if I wanted to. That gives me great hope for the future! If we would have reached this stage one way or another then we will reach the right future stages, too. It’s such a huge stress relief to remind myself that life isn’t that easy to accidentally screw up when I really am trying to get it right.

What do you want other parents fighting the same fight to know?

To those just getting started I would say:
Don’t expect parenting a special needs child to be just another aspect of who you are; it will completely change and define you. One day you will look back and marvel at what you know that you never would have learned otherwise. You’ll be amazed to realize how different you have become; in a few years your very heart and soul and personality will have grown and matured in ways you can’t imagine it having done in your entire lifetime if you had not been given this unique life. It may not feel like it on occasion, but you have been enormously blessed.

Is there anything else you would like to share?

This is too big a question for a short answer. 🙂 I think I’ll leave the rest of the sharing for my blogs. Thank you for giving me an opportunity to speak and welcoming me into the 5MFSN extended family.

Deborah can be found writing here at 5MFSN every Sunday and Wednesday, and can also be found at Pipecleaner Dreams.

5 Responses to Jolly Holly and the New Su Review