My name is Taryn Taylor and I am the mother to a beautiful two year old little girl named Gentry and charmingly handsome 9 month old son named Brantley. My husband Bryan and I have been married almost 4 years (on Brantley’s birthday actually). My son was born June 10, 2014 and we found out in August that his MECP2 gene had been duplicated. It has been a beautiful and scary roller coaster ride…..ok who am I kidding? Mostly scary! I never thought this could happen to our family but with the support of so many wonderful family and friends we are kicking MECP2 right in the ass! (Pardon my language, feel free to replace that!) Brantley is the happiest baby I have ever met, he ALWAYS has a smile on his face. His diagnosis does not define him. He was born a fighter and shows us all a deeper love than I could have ever imagined. Thank you Miggy for including Brantley in your spotlight, we are all about raising awareness and what an amazing thing you are doing for so many others!
Miggy: Taryn, thank you so much for participating in the special needs spotlight. Can you take me back to the day your son was diagnosed with MECP2 Deletion? What was that day like, do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
Taryn: The day Brantley was diagnosed will forever be burned into my mind. My husband’s company was having a family Zoo Day in Oklahoma City and we really wanted to take our daughter Gentry but Brantley had just gotten out of the hospital a couple weeks before that, it was a very hot August day and didn’t think he should go so my mom (his nana) offered to watch him. It was August 23rd (my mom and also my father-in-laws birthday) and while we were at the zoo we had received a phone call that our insurance company wasn’t going to cover the cost of Brantley’s helicopter ride, a whopping $33K bill. I remember thinking this day couldn’t get any worse. We made it home and right after we walked into the door of my mom’s house I received a telephone call from Brantley’s genetic doctor. I knew if they were calling on a Saturday that it wasn’t good news and as the words echoed into my ear that my son had a genetic disorder I remember that I couldn’t catch my breath. Tears were falling and I couldn’t get any words out. I remember the doctor saying that he would have some delays and I kept saying but he can get tutors and that will help, right? If we got him help then he wouldn’t have delays, right? The doctors said she couldn’t say for sure but that she felt it would be more profound and we would see the effects. The genetics doctors were so amazing, they called to check on me and she gave me her personal cell phone number so that if I had any questions I could call and speak directly to her. The next Monday we scheduled an appointment to meet with the doctors and find out what this meant for our family. It is crazy to think back to that day and how far our family has truly come. I didn’t think the tears would ever stop falling, that my heart would ever stop hurting or that I would be able to laugh and be light hearted again.
Miggy: Will you please educate us on what MECP2 duplication syndrome is and how it affects Brantley's and your day-to-day life?
Taryn: MECP2 duplication syndrome is found mostly in males (there are a few girls that have it) and it causes the brain to make too much protein. It is almost the opposite of Retts Syndrome which affects mostly females but the MECP2 gene makes too little protein. It wasn’t even diagnosed until 2006 so it is still very rare. They are actually working on a cure, it is still a long ways off but I am hoping that Brantley will someday be cured. MECP2 causes Brantley to be hypotonic (floppy, weak muscle tone), delayed milestones such as sitting and walking, little to no speech, seizures, recurrent respiratory infections and much more. We have obviously seen the delayed milestones, Brantley is 9 months old and is just now sitting unassisted but only for a few seconds at a time (still a huge accomplishment in our house)! The things we have seen the most in Brantley are the recurrent respiratory infections, he has had 3 hospital stays but we finally were able to get oxygen so that we could keep him at home and he has been sick on and off since Thanksgiving, needless to say we are ready for spring! A few things that have affected our day-to-day lives is the constant stream of doctor’s appointments, trying to keep up with them and feeling guilty for taking off work. My mom owns her own donut store so she works nights and keeps Brantley all day so that my husband and I can continue to work, she is exhausted but she refuses to let Brantley go to a daycare filled with other germy children! For that we are forever grateful.
Miggy: What are the biggest worries you face for Brantley?
Taryn: I could go on and on with this question. For the longest time I will be honest, I thought Brantley wouldn’t understand anything that was going on around him. It is through other families that have older children that have proved that the children can understand what is going but they cannot articulate or formulate answers to talk back. So a huge worry for me is that children at school will make fun of Brantley and he will be able to understand what is being said to him. I worry that he will see his sister getting to do all sorts of things and know that he cannot do them because of the monster of a disorder. I worry that his immune system is so weak that he will die (this year alone we had around 6 children pass away I believe. I think all of them were under the age of 2). I worry that he will die before there is a cure. I worry for not only my daughter but also for myself and my husband. We all had a different life planned out for Brantley, I am starting to get into our “new” normal but I will always wish he could play baseball or get married and have his own children and I know I will never fully accept his disorder.
Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situation?
Taryn: Brantley has issues with his bowels…..he gets constipated very easily! Lately, he has been gassier than normal so Bryan called me into the living room one evening and said watch this and he tickled Brantley under his ribs and he started tooting. Bryan stopped and did it again, he tooted again, we got a pretty good laugh at that one!
My favorite just happened last night though, Bryan took Brantley to his therapy session and I stayed home with Gentry. I got a text from Bryan telling me that Brantley had farted so loud that he actually thought it was him, he said he was so embarrassed. I then asked him how on earth he didn’t know if he was the one that actually farted (which he never answered that question) then I asked him if the therapists heard it and if they thought it was him instead of Brantley. He replied back saying that the therapists were in the other room but he was worried they heard it and thought it was him, he said it was so loud that even if he had told them it was Brantley they never would have believed him! My husband does not embarrass easily but he said he was mortified.....if he is reading this then I am sorry J! :)
Miggy: How can people best approach or respond to Brantley? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
Taryn: I would say right now we have not had a lot of awkward or hurtful situations because he is quite small for his age so mostly people will say “oh look at the new baby”. I tend to just let it go and never correct anyone in those situations. If I get to talking to someone about his disorder the things that probably hurt the most is “but he looks so normal”, “you never know, he may talk”! While I would love to believe he will be able to do certain things, I know it won’t happen. I have seen proof from other families, sometimes I want to scream and say yes, I do know because you better believe I have done extensive research on his disorder! One of Bryan’s family members printed off some business cards with a link to learn more about MECP2, and pictures of Brantley on them. I have gotten to use them a few times and it is a great way to raise awareness too.
Miggy: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to Brantley?
Taryn: Gentry is young, she will be 2 on April 3rd so they are only 14 months apart. She doesn’t understand anything about her brother’s disorder yet but she LOVES him so much. She loves to kiss and hug on him, don’t get me wrong she also loves to hit and sit on him too! In all seriousness, I think it is better she is so young, she loves him for who he is, not because she has to. I always had this idea that they would be inseparable and for a while I feared his diagnosis would change that. I think they will still be as close as I pictured them but she will be the protector instead of Brantley as I envisioned.
Miggy: What is the biggest lesson you’ve learned since becoming a special needs mom?
Taryn: Never judge a book by its cover. Yes, my son may look normal so if he can’t walk by the time he is two or can’t say any words ever then please don’t bring it up because I already know. I am sure I have had those thoughts a time or two. Judging another parent. The truth is, you don’t know their story. Taking care of a special needs child is the most mentally/physically exhausting and scariest thing I have ever been through. If you see a parent to a special needs child, I encourage you to go up to them and tell them how beautiful their child is and what a great job you think they are doing. Sometimes they just need to hear those words.
Brantley has taught me how to love on another level. I have always felt uncomfortable and awkward around special needs kids which has always embarrassed me but I think that is a pretty common feeling, or at least I hope I am not alone on that! I never knew how to act around children with special needs or what to say. Brantley is going to teach me how to be more comfortable in my own skin. I am so PROUD that he is my son and I love showing him off. Him and Gentry are our pride and joy and just treat him like anyone else, he loves to laugh! If you would like to follow our journey I have a blog Blogging for Brantly.
Thanks so much Taryn! I appreciate your honesty in saying that you have always felt uncomfortable and awkward around people with special needs because no you're definitely not alone. We need to be able to speak these truths, so we can learn a better way and teach others the same. The truth is I'm still learning myself and I think we all are on some level. Which is also why I think it's important to show compassion and kindness to others who are still learning and may not always say the 'right' thing. And I love your mom! What an amazing and selfless woman. I wish you and your beautiful family all the best. Much love!
You guys thanks for all the emails for spotlights! I have a several people to still get back to so if you haven't heard from me please be patient. Also, if you're interested in participating please email me! I ALWAYS need more spotlights. Thislittlemiggy at gmail dot com.
Have a fantastic weekend!