There are people in the world that truly make it a better place, and my friend Laura Perkins Taff, happens to be one of those rare, exceptional human beings that gives of herself in a way that truly makes a big difference for others. Not only has Laura found and shared her voice, but in doing so, she has come to the aid of children with special needs and their families in a very important way. Humble, giving, caring, and a difference-maker for the community of children she advocates for, Laura Perkins Taff greatly inspires me and many around her.
Unquestionably, Laura exemplifies the best of what it means to be a parent blog writer utilizing social media to help others in need. It is my honor to share with you my interview with Laura, for she belongs in the circle that is 'Heroes of Today'.
On behalf of the entire family of the I CARE Foundation, I would like to share our deep appreciation to Laura for all of her help advocating awareness of international parental child abduction prevention. Laura went out of her way to raise awarenss of this challenging issue that destorys families even though this issue was remote to her. Yet, understanding the challenges innocent children may face, Laura acted. But that is Laura - a compassionate lady who is willing to help.
Perhaps it is best that I get right to Laura's interview because I think what she has to say is incredible.
So it is my privilege to share with you Today's Hero - Laura Perkins Taff - an incredible lady who has exemplifies the incredible capability of a parent blog writer. More importantly, Laura, by her act, faith, and committment, is the definition of 'good parenting'.
I am very honored to have the privilege of writing about you and the incredible child advocacy work you do, particularly with children with special needs or in crisis. In fact, not only have I laughed quite often when I read your parenting website that you cite is about 'A HodgePodge Mom Blog About Life, Parenting, Special Needs Children, Product Reviews and More' because in reality, your wonderful parenting blog is so much more than a 'HodgePodge', it is an extraordinary, informative parenting website with a tremendous purpose, in particular because it also happens to be an incredibly informative sources of information on MECP2 Duplication syndrome and Rett syndrome Why did you create the Anna and Essie parenting site?
Well, first thank you so much for reading. Time is so valuable and it's always an honor to me when people take a moment or two of their time to read anything I have written. It started so simply. I was reading other blogs and enjoying them and I thought to myself, "Hey I could do that!" I started more because I had loved blogs that talked about using coupons and saving money and I was always thrilled when I could actually find free and deeply discounted products. Soon after, it started to hit me that I could use my blog as a voice for something more.
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| Laura Perkins Taff |
No one expects to become a special needs parent. You find out you are having a baby and you start to daydream about how life is going to be based on your friends and family who you've seen go through the experience. When it turns out to be different, it's a big shock and a huge adjustment. I dont' always mention having a special needs child right away when I meet people because I want them to see life is still good and worthwhile and happy as a special needs parent. It's a huge part of my life but it doesn't rule my life. Yet, it's still hard. As I began to share my experiences and other parents would find my posts, they could relate to me and they would contact me. It grew and developed from there.
As a multiple cancer conqueror who was previously diagnosed with nuerofibromatosis, I have a great appreciation for all individuals who elevate awareness of different challenges that life may bring to us, such as the MECP2 Duplication syndrome your beautiful daughter Anna has been diagnosed with. You write extensively about MECP2 Duplication. Can you explain what this is, and tell us what organizations are working for a cure?
It's a very complex syndrome that wasn't even discovered until 2005. To put it as simply as possible, the MECP2 gene is located on the x chromosome, and is responsible for creating a protein that is essential for normal brain development.Those who have MECP2 Duplication Syndrome have extra pieces of that gene on the x chromosome. Because it's still so new, experts disagree on whether the entire gene has to be duplicated (or even triplicated) or just parts of it, but Anna has only small parts duplicated. Because it is an x-chromosome disease, it's very very rare for girls to have it because girls have the phenomenon of inheriting two x-chromosomes, one of which will inactivate during fetal development. Usually that causes women to be carriers but not show symptoms, in which case they pass it along to their male children. Males only inherit one x-chromosome from their mom, therefore having the duplication in every cell of their bodies and very severe symptoms of mental retardation, hypotonia, seizures, inability to develop a vocabulary, most are immobile, and incur repeated cases of pneumonia. Life expectancy is a very short 21 years. With the very few girls that show symptoms it's not as severe because they do typically have some normal x chromosomes active in their bodies. We have seen some girls with the same severe symptoms as the boys due to the fact that the duplication trans-located to another chromosome which is located in every cell of the body.
Currrently, the Baylor College of Medicine in Houston Texas is conducting basic science research and clinical research in hopes for a cure. There are a few organizations that have formed for MECP2 awareness, but all of their proceeds go to Baylor, so I direct everyone I can straight to Baylor to cut out the "middle man". There is donation information on my MECP2 page on the blog about how to donate to Baylor.
This is an emotional question for me because of the responses I have gotten. Mostly it just gives them hope and encouragement. They see me moving forward and dealing with life as it comes. They also see me break down and get weak at times, but in that we band together to know there's someone else out there going through the same thing we are and it gives us strength. I had one special needs grandmother write to me and tell me she had found my blog and request that I write an email to her daughter who had just found out that the baby had MECP2. I did, and that mom and I have kept in touch since. She has started her own blog to help her have an outlet to reach out to others and vent about the tough days. That's just one example, but it's been so wonderful for me to get a response and know that everything I have gone through is not for nothing. I can reach out a hand when someone needs it and I can get a hand when I need it.
In looking at the wonderful group of parenting blog writers the I CARE Foundation has worked with over the past year, it seems that one of the most active groups are mom blog writers who are raising a child with special needs. What have been the benefits of social media and Internet forums for parents who are raising a child with special needs?
Well, social media is just so popular and allows an outreach to so many people. I'd say that's the biggest benefit, just having such a huge audience to get in touch with right from your living-room. Special needs parents have so much to say and share that without social media we wouldn't be able to reach so many people.
Has creating a parenting blog allowed you to share your voice - and your incredible knowledge - on subjects that have benefited others, and if so, how?
Definitely so. Whether someone grabs a recipe, learns tips on what worked for me in potty training, or bonds with me over a bad day I'd say it benefits readers in some way. My most recent example is getting a comment from a reader on a post I wrote about how single dads often make visitation time super-fun and moms are left feeling like the warden who has to enforce all the rules and be a bore. In my experience I learned that dads feel like they need to do that because their time is so limited, and their house isn't home to the kids. (In many cases.) No matter how much fun you have on vacation, you always want to go home. The reader told me she really needed that as she awaited her daughter's return from the "fun house" and she was happy to remember that "there's no place like home". It's such a benefit to me as well. As I mentioned earlier, writing can be such an outlet and way to vent. When someone reads it and tells me that they got something from it, it blesses me doubly!
The Internet has changed the dynamics of not only how we obtain information, but clearly social media has allowed people from all around the world to mobilize. I think of how the Arab Spring swept through many Middle Eastern nations. How has social media mobilized parents who are raising their children with special needs?
I can tell you in my situation I have heard from parents in the UK and in China who were looking up information on MECP2. It was great to be able to compare notes and see the similarities and differences in our girls. Without social media there wouldn't have been a way to accomplish that.
I have learned a long time ago that children with special needs are in fact teachers. In fact, I have a little buddy in my life, his name is Connor, who has taught me so much about life. What are some of the things that Anna has directly or indirectly taught you?
That question brings tears to my eyes. Anna teaches us all so much. I think the first thing she indirectly taught me was that she's happy with her life as long as I am! I used to catch myself looking at children her age and seeing where she would be and what she would be doing if she had developed normally, and it would break me. Anna is such a happy, loving child. She is happy just like she is. There's no reason for me not to be. Directly she teaches us all so much about love and laughter. She becomes so excited over the things she enjoys. Her face lights up and it illuminates the room. We were at a conference one time and as I turned to sit down I found a piece of paper laying in my seat. It was a poem written about Anna from the lady that had been sitting behind us just based on Anna's love for life and her facial expressions. She teaches us to celebrate all the great moments of life! She teaches us how to love deeply. A mouse ran out in our kitchen one day and I screamed! At first she was scared but I calmed her down and helped her understand I had just been startled. She took me by the hand, looked in my face and said, "Don't worry mom, we'll figure this out together." I tell you there's nothing I can't face with her by my side.
Oh thank you. I try to tell other parents dealing with my situation that courage and strength are learned more than something you come equipped with. It's that fight or flight instinct that kicks in. You can't run away from it so you have to fight. You have this situation dumped in your lap and you have to learn to cope. I tell them don't beat yourself up at weak and trying times because we all go through them. Sharing my courage with others just helps me to continue being courageous.
There was a time when a person staying at home and raising their family may have felt that they lost their voice. Today, the traditional workplace has changed, and with it, social media has changed the way voices are heard. Can you provide some insight on this?
The only thing I can really think to say is what we've touched on already, that we can reach so many people sitting right in our homes. I'm very grateful to social media outlets for that.
How do you select the topics you write about?
I find subjects based on what I'm doing in my life at the time. Sometimes I get so full of ideas I have to make a list of things I want to write about when I get the chance. My sister and I ate barbecue pork nachos last week and since then I keep thinking I want to do a recipe-post about it and share how my sweet neighbor brought them to me one day and how much I've enjoyed them since. It's written on my chalk-board right now as a reminder. Moments with Anna just sprout up all the time and sometimes I miss writing about them, but I try to share as much as I can because I know other parents are reading. My youngest daughter Essie provides quite a bit of inspiration as well.
You have faith in the God you believe in as shared in your writing. Sometimes, God puts us through challenges that we may not necessarily want. When these challenges come into your life, as they do, other's live, how does your faith guide you?
That is a question I've dealt with since realizing I was a special needs parent. I have to refer to my favorite Bible verse on this one. John 16:33 I have told you these things so that in me you may have peace. In this world you will have tribulation, but be of good cheer! I have overcome the world. See, we are not promised that no bad thing will happen to us as believers, but we are asked to take heart and know that God will be with us. I like the version that says, "Be of good cheer" because it reminds me of my cheerful sweet Anna. Sometimes I feel like all I know for sure is GOD IS REAL and GOD IS WITH ME. It keeps me hanging on.
What do you think it means to have 'Courage in Faith?"
That's such a great question because faith takes a lot of courage. People and life can hurt us and it can shake the very foundation of our faith. I think to have courage in faith means to keep daring to believe even when it seems like there's nothing to believe in anymore. When it feels like if we put our hearts on the line to believe that we could get hurt again, and we still keep pressing on...that's courage in faith.
Your daughter Essie likes to have potato sack races with you? Who usually wins?
She wins! She's so full of life and energy and youth and excitement. I wish I could bottle it up and drink it when I need an extra boost. Thank you for asking about Essie as well. I think the Lord made her full of extra-tough stuff because some day she will surpass Anna's development and become the "older" sister even though she's 6 years younger. Her spunk is a lot to keep up with now, but she's a joy and a blessing just like my Anna.
When I became aware of the outreach it was my hearts desire to do whatever I could. As a parent there's nothing scarier than the thought of losing your child. Having this voice and this outreach we've talked about throughout this interview is such a blessing so that I can have some way to lend a hand. I can't imagine why any parent or any person with the ability to raise awareness and help would not do it.
After nearly 30 years of consistent growth in reported cases of child abduction, including recent forecasts that growth would continue by 20% per year, the Department of State reported a 15% decline in the reported abduction rate. During this time, a grassroots campaign was launched that included utilizing the influence of parent blog writers like yourself who wrote about abduction prevention. How important of a role do you think parent blog writers have on influencing social issues?
Very very important. I think people are just starting to "get" how influential bloggers can be. I'm so very excited to be a part of it all.
Do you think parent bloggers should dedicate a specific amount of their writings toward discussing social issues?
I hadn't thought about it before you asked me, but yes. I think we have a responsibility to use our influence in a positive ethical way. Anyone with a sense of "power" can abuse it if they are not careful. I'm not sure how much of their writing should be dedicated to discussing social issues but I definitely believe when given a chance to give a positive, informative, helpful message they should.
Can you name three books that have influenced your life?
Does the Bible count? I can't think of another book that influences my life more than that one. "Every Woman's Battle" by Shannon Ethridge, and "Praying Gods Word" by Beth Moore have influenced me as well. I get inspired by books quite often. I just finished "The Circle Series" by Ted Dekker and found so much inspiration in faith even though it's a work of fiction. I also love the classics. My brother and I used to do a Classics book club. We both found so much to talk about reading, "The Catcher in the Rye" and my personal favorite was, "The Old Man and the Sea". I think those were more inspirational than influential but I definitely love the written word.
Can you name three things that you are most proud of about your Anna and Essie website?
My number one would have to be that it's a sounding board and a source of hope and inspiration for other special needs parents. It's been a thrill to be able to earn some extra income through the blog which is desperately needed as a single special needs parent. Also, I have been invited several times to appear on television news programs through the blog. These are all things I had no idea would happen when I first started writing.
What do you enjoy doing outside of raising your beautiful daughters?
I have quite a few interests actually. I enjoy singing very much, and I'm not too bad at it. I enjoy crafts like painting and sewing. I've become a great cook...and baking is a favorite pastime of mine. Of course I've already mentioned I love reading as well. I'm learning to garden this year, and I have no clue what I'm doing but it's great for for me and the girls. We check the plants each day and go outside together to plan out where we will put them. They help me water the seedlings. It's been a great hobby for us all to develop together.
(End Interview)
It is my honor and privilege to call Laura my friend. The world, and particularly children in need, are in a better place in many ways not just because of Laura's diret advocacy, but, her advocacy sets an example for others to follow. By act, Laura demonstrates time-and-time again that each of us has a responsibility to make the world a better place - something she surely does.
To read more about Laura, please visit her delightful parenting website, www.annaandessie.com.
