Battles against terminal illness, anxiety, and life!

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Fundoplication and Feeding Tube Surgery

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.

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!

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!

Living

“I just don’t know how you can live like that!” the medical supply salesperson exclaimed on the other end of the line. Stuck somewhere between flabbergasted and slightly amused, I laughed a deep laugh that came from my soul. “Oh! You mean surrounded by love with nothing but the most cherished and amazing blessings I could ever be given? Yeah, it’s a real hardship I tell you! Somehow though I am sure I will make it through. So, when can I expect delivery?” I respond. A long time ago I let go of the idea that folks would be able to look past what they see at first glance.

If you are to write on paper what our family is like it may not be the most perfect glowing resume. However, to see it’s beauty in action is something else. We are just your normal family working through typical things like sibling disagreements, potty training, elementary and preschool, family vacations, and teaching responsibility to three small children. If you have no exposure to children with special needs it is very easy to assume a large variety of things. You will more readily notice the permanent urinary incontinence, the wheelchair, medical equipment, and emotional turmoil that comes with having a chronic medical condition. While exceedingly important, they are not the focus of our world. We are too busy working our way around those things to do the more fun things! Every family comes with its own unique circumstances. There is no textbook “perfect” family. Sometimes folks just need reminding of that. Today it was my turn to remind the clerk that urinary incontinence isn’t so horrible. Look at the benefits! He is the last one to ask for a potty break on road trips! It’s all about how you look at things my friends. So, please think twice before you size up another family. They may not be able to laugh so readily at your foible.

 

Thoughts

February 13, 2014

Today you found yourself in the precarious position of having too little to do. For most the lack of lists filled with “to do” and reminders of all there is to accomplish in insufficient time would be cause for celebration. Yet for you it becomes a good time to cry. No longer able to use those lists to keep you too busy to contemplate the crazy that is life. This momentary pause feels like karma’s revenge for the many indiscretions of my youth. I am held hostage by my own emotions today. Their assault completely unwelcome yet most necessary to keep my internal system of checks and balances in working order.

There is nothing and everything all at once to feel. The waves of emotion causing my ship to feel lost at sea during hurricane season. My only hope is to find refuge and comfort in the fact that I can do this, am strong, capable, and enough. It is a mantra that must be repeated often to ensure survival. After all courage and bravery can be found in the hundreds of every day decisions made on the front lines of our home. I must be capable of steering our ship to safer waters.

Please some day remember that you did your best every single day. You proved that while you are most definitely strong. You recognize that you are also strong enough to fall apart, knowing that a individual that is able to embrace their weaknesses is stronger than one whom blindly denies their existence.