Battles against terminal illness, anxiety, and life!

Posts tagged ‘Parenting’


Today the hurt had nowhere to go so it was converted into love in the form of chocolate chip cookies that were given to my sweet children. Some days are just like that. I have repeated myself so many times this week that I am starting to dream about it. I used to do that when we first adopted Braden. After the first ugly comment we received about being white folks raising a biracial child, I would have arguments in the shower hours after the idiot had already left. If only I had had my well thought out responses ready while standing in front of that man! Alas, my poor shower walls were the ones that got the piece of my mind instead. I grew into grace. I learned how to hold my head high and deliver a pointed comment with class. Then came A-T. For a year after that diagnosis there was no come backs. There was just tears. I had nothing but raw emotion to carry me through difficult encounters. I grew into strength. I learned compassion and how to advocate. Nothing is “new” over here just more out in the open.

Words gets around in a small town. So, there is no real point of hiding in some dark and lonely closet. Before I go into more detail, I just ask you if you cannot or do not wish to be polite about what I am going to say, please just walk away. Click on another article, find something else to do, channel love into cookies, whatever works for you. I will delete comments that are cruel or mean. It is my space, and so I feel comfortable in doing that. I don’t need negativity in it. What I want is room for learning, love, questions that are being asked with the intent to understand not to hurt or shame. We on the same page here? I am guessing so, as nobody wants to be discriminated against or hurt.

Braden is transgender.


Yes, transgender.

Um, what’s that?

Well, it is when your sex (what organs you have when you look below your belt) doesn’t match your gender (what your heart and head tell you are.) So, my child who has a penis (male) feels as if he is in the wrong body. He feels wholeheartedly he should have been born into a female body. Make sense? Yes, I know that it is hard to understand. I couldn’t even imagine feeling this way. Everything inside of me screams girl. I couldn’t fathom having to lead a life as a boy. Apparently neither can my child.

Many of you have already read this either on my personal Facebook page or in the comments on a recent post on Team Braden Winks page. However, I will post it again here. Later posts will go into further depth. Perhaps we can promote some understanding.

Fists clenched tightly by his side, face red, and tears streaming down his face he screeched, “I don’t want a penis!” Staring in the bathroom mirror at his reflection I turn on my heel quickly to see the pain in his tiny face at just a few years old. He was so small and so adamant. I crouched down and said as sweetly and calmly as I could, “I’m so sorry honey, but that’s just the way you were born.” I then squeezed him tightly until the sobs subsided all the while making a very large mental note to call his therapist first thing Monday morning. It wasn’t the first time we had questioned our son’s gender identity, but it was the very first clear cut red flag that this was not in fact a “phase.”

Sex. As if the word “penis” didn’t catch your attention in the first paragraph. I’m not talking about what happens behind closed doors in your bedroom. For the sake of this article that may be referred to as intercourse. What I am referring to is the genitals that you were born with. My son was born with a penis. This is an absolute unable to dispute fact. However, his gender is decidedly female. This is called transgender. I’m sure you have heard the media circus surrounding this. A whole host of parents have bravely stepped forward in support of their children. The touching videos and articles are trickling into media outlets and people are glimpsing into the life of something that was until recently kept completely under wraps.

There is a good reason that many families choose to move to more liberal areas of the country or to live dual lives. Safety for transgender people is a large concern. According to a Report of the National Transgender Discrimination Survey in 2011, 41% of transgender individuals have attempted suicide. Why? It may have to do with the fact that 78% of children in grade K-12 experience harassment, 35% are physically assaulted, 12% are sexually assaulted, and in the end 15% leave school as a result. Would you stand for this for your child? People would be up in arms if their child was sexually assaulted at school. Yet, this is a serious every day threat for children who are transgender. The results are a community that live in fear and often have to hide their true identity. 71% of transgender individuals dress as their given sex and lead private lives in line with their gender. This dual life is confusing, frustrating, and not healthy. The constant condemnation and lack of support leads to serious mental health issues such as substance abuse. The report finds that 70% of the transgender community turn to drugs to cope. The statistics are sobering.

Not my child. My child will NOT become that statistic. I will do everything within my power to never walk into a room and see her wrists slit, pills swallowed, or some other form of life ending event. I choose to support the natural (yes natural as this is how she was born) transition to becoming in line with her gender. Is it shocking to learn that your son is in fact a daughter? Absolutely! Is it the path you would choose for them? Absolutely not. Why? This is a hard path, a rocky one with unknown terrain, no guide map, and loads of folks lined up along the path to quite literally throw stones at your child. It is scary as hell! Yet, here we sit with a child who wishes every single night on her fiber optic stars in her ceiling to become a girl.

Just how did we get here? How did that chubby little baby boy become the slender dress wearing and all things pink loving little girl? We really didn’t believe there was much to B’s love of his sister’s toys. After all, her Make-A-Wish trip was to go to Thomas Land in England. Yet there came a turning point where she realized she was allowed to play with her sister’s toys and to not feel ashamed. I would find Eve’s baby dolls in her dresser or clothes under her pillow. She would put pants on her head and pretend she had long hair. We would laugh and chalk it up to just being one of the girls since she had two sisters. Eventually we became frustrated as Eve would cry for her dolls that we couldn’t find and she was stretching out Eve’s pants by putting them on her head. The more adamant that we became that B leave Eve’s toys and clothing alone the angrier she became. We assumed there was some sibling rivalry at play.

Then came the day that terrified us. The day that B threatened to cut her penis off. There really are no words to describe the emotions that run through you. Why would anyone contemplate something so awful? I mean, sure I’ve been frustrated with certain body parts a time or two but brutally removing them was never something that I would have seriously contemplated or threatened to do. Yet there she stood in abject horror of her penis. There is nothing that prepares you for that moment. No one sits you down as a new parent and says, “So, there may come a day when your son wishes to self-mutilate by cutting off his genitalia in disgust of being born the wrong gender.” Even if they had, I would have no frame of reference to fully understand. From that day forward we decide to take B’s gender fluidity very seriously.

Slowly but surely B became more and more adamant that “he” was a “she.” Let’s break B down for a moment.

Sex = Male

Gender = Female

Gender Expression = Female

However, up until B was five years old this chart would look more like:

Sex = Male

Gender = Female (although we didn’t know it.)

Gender Expression = Male and Female

You see the only thing that has really changed is the way B expresses her gender. She has always had a penis. According to B, she has always felt like a girl on the inside. What’s changed is the outer packaging. She now wants longer hair, bows, dresses, and all that comes along with being a card carrying female. I can’t say I blame her!

So, along came transgender and I am growing into understanding and advocacy. I am now teaching tolerance and promoting understanding. My daughter is beautiful and nobody will ever be able to tell me differently. She was created perfectly and I wouldn’t trade her for anything. Nobody will ever be able to convince me that this is a choice, a sin, or anything other than being who she is meant to be. Period. I love her unconditionally. This is what being a parent is. All of my children will know that they have their parents in their corner no matter what. I have an amazing husband who is right beside us and learning the ropes too.



To Newly Diagnosed A-T families.

I often think of our children who have A-T in generations. Every year of an A-T child’s life is approximately five for the rest of us. That would make my seven year old nearly thirty five. Although I swear to you he ages me as quickly as he “ages.” About a handful of parents new to the A-T diagnosis contact me each year. It is so hard to feel how heavy the weight of the diagnosis is on them. After Braden’s diagnosis we were in heavy mourning for about a solid year. Extending a hand to these families, while heart breaking, makes me feel as if I can help in some small way. It’s not a fun club to belong to, but there is much we can share with each other. We are now four years out from the day he was diagnosed. What’s life like now compared to then?

When your child is first diagnosed it feels as if there is a giant elephant in the room. However, slowly but surely he finds a quiet corner to sit down in and makes himself as unobtrusive as possible. Oh there is no ignoring our elephant and he seriously smells. He wreaks havoc on most days, but we have learned that there is no getting rid of him so we might as well learn to accept him. In short, we have learned that A-T is a giant beast of a diagnosis. It is a heart breaking soul crushing situation to be in to know you will outlive your child. We have learned that despite the hardships we can and will persevere. We have learned that it is very easy to become negative. Parenting is a tough enough gig to start. Throw in cyclical vomiting, oculomotor apraxia, dysarthria, incontinence, tremors, and more big long words that we didn’t really understand in the beginning and it’s easy to get overwhelmed. Hang in there! You will learn them all and can do this!

So, wait, am I saying I am at peace? #$$%@^$ No! Gah! No, what I have learned is that a code word is needed with friends and family to let them know A-T is getting the best of me and that I may need a bit of grace, an extra hand, or to leave the room unexpectedly. After all, I don’t want Braden to see me crying over A-T. Not the way in which A-T makes me ugly cry. So, we get the sniffles over here. I’ve learned that sometimes you have to “do” and not “think.” I’ve learned organization is key where school and doctors are concerned. I’m thankful for every time my parents didn’t yell at me for questioning authority in a healthy way. If they hadn’t, I doubt I would be as capable of questioning doctors and administrators without fear. I have learned to embrace our family’s uniqueness. We have developed a twisted humor that most wouldn’t understand. We’ve also learned to seek out the happy and to do things now. You will get there.

We’ve learned that we don’t have to raise the next Harvard grad. We have to raise a child to be happy, as healthy as possible, and respectful. That’s somewhat liberating! We remember to take notes from those generations before us as well. Ask for things before you may need them as it will lay the foundation. Plan holidays and traditions now in preparation for how things will be. For example, move furniture now to be more handicap accessible later. Teach younger siblings to keep toys out of the main pathways so wheelchairs may go through them. Move Easter Egg hunts inside or have places outside where eggs are hidden at a height in which the child won’t have to stoop down. Start eating foods in fun ways that the kids will need later. We started drinking soup and other foods from coffee mugs. Spoons are really hard for our kids! We preemptively strike! This will eliminate “losses” when they can no longer to do these things. He didn’t use a spoon to eat soup! So, no loss. Just remember to not compare A-T kids. There are varying levels of both ability and health.

We’ve learned that when they say that your child will experience a rapid decline at age five they REALLY weren’t joking. That free fall lasted a year and a half. We’ve learned that it is terrifying and just how much of a team we need to be under this roof. We also learned how important counseling is. Take care of you so that you can take care of them. It’s the whole “Put your oxygen mask on first” philosophy. Stay as solid as you can in your marriage. A-T will expose every crack in your foundation! Know that you will most likely lose some friends. It will hurt. However, the friends that remain are the ones that deserve your respect. Learn to forgive those that walk away. It speaks more loudly of them than it does of you. Keep your chin up!

If you need a shoulder, please don’t hesitate to send me a message. I will listen. You are not alone.