Another face of Ataxia-Telangiectasia

Tick tock…pajamas…tick tock…hair bows…tick tock…infusion supplies…tick tock…pull ups…tick tock…My Little Ponies…tick tock…snacks for me…tick tock…comfort blanket…tick tock we race the clock. My thoughts are fragmented and never dwelling on one for more than a minute or the emotional toll spills over into the areas of my life that need me to be my best. Surgery on Tuesday is coming and I can only focus on what I can control. I can pack bags, have food ready, line up sitters, have exciting and fun things lined up for the kids to do while I am at the hospital with Braden. I cannot control the thousands of factors that could make this one of my last days with my child. Just thinking about it is too much for any mother to bear.

How does a family live just two days before such a stressful event? By living. No really. We are appreciating those thousand things you take for granted each and every day. I watched Eve voluntarily dress Braden this morning. It was tender and sweet. She did it to be a part of this team. She felt no obligation, and it pulled them even closer. She did it so they could play with the hose, play house in the back yard, pretend to be photographers snapping pictures of princesses! We will spend it making banana bread, snuggling under blankets, brushing our teeth, disciplining for wayward behavior, and loving each other as we always do.

No matter the outcome on Tuesday, I am continually reminding myself that we are doing what is best for our child with the most up to date research available and with the recommendation of our doctors. If things go well this will improve the quality of life for Braden. If it doesn’t…not going there. One of the two giant elephants in our life is sitting squarely on my chest. The difference between this time and the last is that his presence on my chest is not as scary to me. I anticipated his arrival. I know how to handle him with more finesse. We will breathe our way through this one. We will hope for the best on that day. Until then though we will live blissfully as a family of six that loves each other immensely. There is nothing sweeter than that. After all, when your child’s life hangs in the balance, so much seems so very trivial and small. Hug those you love and tell them often my friends.

Admiration

I admire my child. I admire her courage, her strength, and her self awareness. Things have never been easy for Braden. We all now know the struggles that A-T brings. There are the tremors, deterioration of movement and ultimate dependency on others and a wheelchair, oculomotor apraxia (eyes not going where you tell them,) dysarthria (slurred speech that’s hard to create,) apraxia of the tongue (a partial paralyzation of the tongue,) reflux, immune deficiency and dependency upon immunoglobulin therapy, increased risks of cancer and diabetes, sterilization, gray hair and warts, degeneration of the cerebellum. Do I need to really keep going? It’s depressing. Having to endure those things isn’t what makes me admire her. Nope. Why not if not for that impressive list of mountains to climb?

My child has had to learn that just because someone gives birth to you doesn’t mean they love you. While we have experienced adoption with an AMAZING biological family that is now our family, this isn’t the case for Braden. That initial hurt is a big one. I admire her for accepting and understanding that sometimes people are too sick to understand their actions or to care about them. I love that she knows family are the people that love you regardless of blood ties. We teach her to be proud of the love we have for her and her adoption story.

Why else you ask? Oh millions of reasons! Perhaps it is because she can teach a sex education class since we’ve had to explain how she is brown and biracial. She will educate you on why pigment of skin isn’t a determining factor of her worth but is a part of cultural identity. She knows that you don’t have to be color blind but color aware. She has shown her siblings that love knows no bounds.

In the past few weeks we have endured some serious criticism about Braden being transgender. The resounding words are, “We don’t get it!” Perhaps none of us ever will. After all, we don’t live in her skin. I’m sure most don’t “get” what it is like to be adopted, biracial, or have a rare terminal illness. To be honest, I’m not asking you to get it. Nope. I’m just asking you to go with it. I’m not asking you to read countless books, videos, documentaries, blogs, or research articles. I’m not asking to you to attend PFLAG meetings, wrap yourself in a rainbow flag, or to speak to specialists throughout the nation. Nope, that’s our job. A job we have taken very seriously. I’m asking you to treat my child like you always have. At the very least treat her with the same dignity and respect you should treat all human beings with.

What I admire most about Braden is her concept of self. She is very VERY aware of the current turmoil surrounding her “coming out.” We have gone over every ugly word (hopefully) she can be called. She understands that some will tell her she is destined for hell, a sinner, an abomination. She knows that some folks think she is wrong, choosing this, or minimally playing dress up. She understands she will be teased, bullied, and harassed. She knows that there is a threat to her safety. She knows that even family is capable of turning their back on her and disgustingly and narrow mindedly have. She knows folks may stop loving her or very sadly being her friend. Yet, she knows who she really is. She is capable of holding on strongly to her sense of self and her convictions. How can I not envy that? How can I not admire that courage and strength? Is there anything you feel that strongly about that you would risk such hatred, condemnation, or the love of your family? There are only five reasons I would. They are my children and husband.

So what’s life like out of the closet? Um, normal. We do what we do just like you. We don’t have tantrums like we used to over this subject. We no longer have to have lengthy debates over whether we step into society “forced to be a boy.” We just live. We can now tackle the much larger hurdles in our life. Y’know like surviving an upcoming surgery. The awful truth is that Braden has been hurt immensely by many but has been shown more kindness than hate. The wounds will scar over in time, and she will learn that those that remain by her side are the ones that truly count.

So thank you Braden for teaching me that being true to yourself is the key to happiness. I will always love you unconditionally. Thank you for teaching all of us under this roof that we don’t have to understand completely to love you anyway. I will always cherish the life lessons you have taught me sweetie.

Love

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.

Huh?

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.

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The Void

All of us have experienced what I like to call “The Void.” It is when we say something and all we hear is silence in return. It is as if the words were said in a vacuum. Behind them they leave an empty space. Words that once took up special residence in our hearts, mind, body, and sometimes soul seem to then head into the nothingness, stripped of honor, and their significance ignored. Yet while we all experience this, it often feels as if we all stand around pretending that this isn’t happening. You know, as if by admitting that we feel lonely and sometimes unimportant that we will no longer be permitted to sit at the cool kids’ table. I say this not to point fingers or to say that this happens to one group of people more so than others. On the contrary, the point is to bring us all together.

Each and every single one of us is a complex being that comes with history. Not a soul on Earth knows or completely understands the contents or weight of the baggage we carry with us. Yet we often make the assumption that our voices will not just be heard but understood. When we throw something out there, we do so with the hopes that the troops will rally and magically they will make everything all better. In short, we look to the outside world to help heal our wounds. This isn’t wrong. We all want to feel like we belong, that we are cared about, supported, and loved. Mostly though, I believe we all seek to be understood. Yet the vulnerability that it takes to be understood is rather scary. You have to put yourself out there and that my friends is rather scary. Nobody wants to be seen as different.

Different isn’t just something our family has become, but it is something interwoven into our beings. The day B was diagnosed our family was forever changed. Every day since then has changed and shaped us into who we are now. We are learning to not just accept our differences but to own them. “Mommy, I don’t want to be different anymore!” B exclaims to me while snuggling one evening. Carefully crafting my response, I remind him that we are all different. Some of us just wear our differences a little differently. I wanted B to know that his words didn’t fall on deaf ears. The emotions and meaning behind his fears and concerns didn’t echo into The Void. “You have to learn to accept yourself just as you are,” we remind him. To share his fears with me allowed himself to be vulnerable but from that vulnerability comes strength.

As a parent of a special needs child, I often hear parents shout from the rooftops how stressed, overwhelmed, fearful, discouraged, angry, lonely, frustrated, and scared they are. Their words often land in The Void. Posts linger on Facebook with folks hitting the “Like” button in an effort to show support but not really knowing how. This leaves that parent feeling those previously mentioned emotions even more strongly. In effect they become amplified, emotions rise to the surface, and then things get just plain ugly. The Void seems to echo those emotions back to you in ten fold. There is no blame to be placed here. Rather there should be some education and vulnerability shown. First of all, we hear you. You have a life that is busy, chaotic, stressful, and your emotional bank is often overdrawn as well. So, we with those special needs kids need to remember to extend the same courtesy of supporting you when you yell out into The Void. We need to be there for you. We do not wish to judge you, compare your struggles to ours, or diminish what you are feeling. That’s the give. Then, when we send out our own SOS, please remember to send that same love back. How? Just how you wonder?

“I’m sorry this is happening. I am available to help in x, y, or z way.”  “I am available to listen any time.” Make sure you mean that. Send them a pizza. Send a random note in the mail, phone call, or text of support. Ask if they want to go out for coffee. Do something! Anything! Just don’t let the words fall into The Void. Being super duper different is tough stuff. The looks, the stares, the birthday parties you don’t get invited to, the friends your child(ren) don’t have, the lack of understanding, the frustration of not being able to do what a “typical” family can, and the list goes on and on. What we as a special needs community need to find is some common ground with you. So, talk to your children about differences and that they are ok. Teach them to reach out to other children. Explain to them what bullying looks like. Role play ways of stopping bullying of other children. Train them to not be a bully themselves and hold them accountable to that. Make your children rise up to be better people. Show them how to be inclusive. At any given point you or your child could become a member of a minority group. An accident could leave you with mental, physical, or health issues. The child you have raised and love to pieces could become a member of the LGBTQ community. They could become bullied for having glasses, being dyslexic, or any other host of issues that could cause them to be classified as “other.” So remember that none of us get out of this alive, so we better stick together!

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.

Seven

I find us winding down yet another year in the life of my sweet Prince Charming. The sands of time a rapidly flowing river carrying us away in its violent fury as we desperately try to remain afloat. Each year we are carried closer to that finish line. If only I could still the waters and suspend time. We know all too well that swimming against the current will only prove to exhaust us. Clinging to love and hope we continue on this journey through another year not of fear but of thankfulness for the gift of life.

My baby boy is turning seven, and as his doctors have pointed out he is more than half way through his life expectancy. In the face of A-T I often feel so very small. My child’s battles are also my own, protectively wrapping my maternal arms around him I am willing to help slay the dragon armed with only a butter knife. It was only after becoming a mother that I truly realized what selflessness is. I would allow the dragon to consume me whole if it would keep my children out of harm’s way. This woman defends her castle with the determination of a thousand warriors and with my own knight fighting at my side in effortless fluidity to defend what is ours. A-T is our dragon, but seven is the alligator filled moat we must swim through.

Every day is a challenge, but each new year brings a very new and specific challenge. What will it be this year? How will we manage to navigate the new “normal”? We just never know what to expect except the unexpected. The consistent inconsistency a reminder of what feels like a broken promise of what life was supposed to be. Yet there is still great beauty in this life of ours for a family as strong and united as this is a rare and precious gift I will always treasure.

Room Makeover Time!

For the past year we have been renovating our garage and converting it into a handicap accessible bedroom and bathroom for the super handsome and rather loveable Mr. Braden. This process has taken considerable energy, determination, and a whole community to make it possible. I have called local businesses, worked with a non-profit called Special Spaces, and have had local bands, schools, and churches help make this possible. It sometimes really and truly does take a community. If I had had the funds in my bank account, life would have been so much easier. However, I would have missed out on seeing how a community can pull together and rally around a family when they really need it. I endured being called some very harsh things and dealt with some unsavory characters in the course of making Braden’s dream a reality. However, instead of disheartening me it has driven me to see this through to the end. We are almost there!

I have so many people to thank, and I will do that in a later post. I promise! For now, I just want to leave the information for the final day of this room creation. Special Spaces will work like Extreme Makeover Home Edition and kick us out of our home on April 5th to decorate Braden’s room. If you have hands or want to check his new space out, please feel free to stop by. I don’t know how many volunteers are needed yet. We are waiting on a head count need from the company. I will give more details on this as I know them. As always, the best way to keep in touch with us in on Braden’s FB page.

Thanks everyone!

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