Battles against terminal illness, anxiety, and life!


“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.




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.

Do you ever wonder just what it feels like to have cancer, to survive a shark attack, or to in our case to raise a terminally ill child? They say curiosity killed the cat, but I am fond of cats and would hate to see harm come of them. So, if I satisfy some curiosity perhaps I will earn some good Karma for safeguarding the future of a few felines. Now if only my child had nine lives! Alas, no such luck. So here is a glimpse into our little lives. I call it my good, the bad, and the ugly post of sorts.

Somewhere in the middle of the night I hear coughing followed by a very loud alarm. Awaking I see that oxygen saturation levels have fallen to 89%. Quickly I shift out of my fog to check that the monitor is in fact securely on Braden’s toe. You have to start with the simplest answer in our world and above all remain calm. Noticing that everything is in fact fine, I turn the alarm system completely off. It is blazing loud and so far Braden is sleeping through my poking and prodding. I use my cell phone to make sure his cough assist device is set to all the correct settings. I whisper in Braden’s ear that we need to use his cougher and he grumbles at me but rolls over. Ten repetitions later I turn back on his monitor. His oxygen seems to have recovered and all is well. He then complains loudly but falls asleep a few minutes later. At least if he is complaining he is breathing, right?

Those are the movement by movement steps. A lot of the time that’s just how things are. We work through the medical steps. Yet there are those times where we have to process what just happened. We have to admit that what just happened was seriously scary. We have to acknowledge that we are worried about messing it up. We have to address those “what if” scenarios. When you put your head back on the pillow you realize for the first time you exhale and let your shoulders fall back down to where they should be. Another crisis was averted, and you force your mind to not go there. That place that wonders what would have happened had you not been there, not been able to fix the problem, had you panicked and kept a clear head. That is a very scary and dangerous place to go.

Morning comes and it is time to get ready. The day starts with changing his pull up. Most of the time he practically sleeps through this. Other times he chooses this moment to rail at the fact that he can’t control his bladder and at the injustice of it since he is six. “Why can’t I wear underwear like everyone else?” he screams. My heart twists but if I show how much this hurts me too he will give in to the injustice and become depressed. So instead I change the subject, tickle him, or give him my best scowly face and ask him to join me in coffee. He always finds that funny since, “Kids don’t drink coffee Mom!”

Before we throw clothes on and get into the routine we must address medical “stuff” first. That’s the cough assist device he uses. Remember that life saver from the middle of the night? Yeah, we do that again. Ten repetitions of that to makes sure that we have a clean enough airway. If oxygen levels read low on the monitor or Braden sounds congested, we will use his nebulizer and then his cough assist. This is one of those you know it when you hear and see it type situations that you can adequately explain to someone. Once we are sure we have enough oxygen, we can go about the business of getting ready to take on the day!

Braden’s ataxia (or wobbliness) makes it a heck of a challenge and pretty much impossible to dress himself. So, just as I do my freshly turned two year old, I dress him head to toe. Then, it is off to make him breakfast. I get him a sippy cup because tremors make it impossible to drink cleanly from a “real cup.” I pour in whole milk with a ton of Carnation Instant Breakfast. We must get in every calorie we can. His feeding tube will be placed soon, and perhaps we can focus on eating for fun instead of agonizing over getting enough calories. I prepare him as much breakfast as he will willingly eat. He remains in bed because he saves his energy for what counts. To get up and play would tire him out before he even makes it to school. After he is done eating his breakfast in bed, I brush his teeth for him. His tremors make even brushing your teeth feel like you are trying to move mountains. Why spend such energy on a menial task? So, I brush for him with fluoride free toothpaste since coordinating a cup, swishing, and spitting isn’t something he can do. He ends up swallowing nearly every time. We then make our way to the living room where I make sure his curly head stays cute curls and not crazy bed head.

On school days, then the school nurse arrives to greet Braden. The two of them ride the bus into school together. If Braden gets a mucous plug as he is prone to do, he must have someone there to act quickly. I am thinking the awesome bus driver and aid appreciate this! So, off they go with his push chair, book bag, and suction machine. Tomorrow will be the first time he takes his motorized wheelchair to school. Is it wrong to think he should have a student driver flag to warn his peers of his newly acquired independence? The suction machine also goes to school and it arrived on the scene after an ambulance ride this year when Braden’s oxygen levels dropped and couldn’t be brought back up through chest physical therapy due to a mucous plug. So, now if that happens we can stick the catheter down his nose and into his esophagus to suck that nasty out and allow him to breathe! As a mother this terrifies me! As a caregiver to him, I am thankful for the life saving equipment. In the beginning I mourned him losing the ability to ride the bus “like a normal kid.” Now, I am just happy to see the bond that he has with the school nurse and to know that this is his normal and that’s ok.

At school, Braden has a one on one aide. She is his hands, his helper, translator, and assistant. We love her to pieces! He is in a regular classroom with his peers. He is a smart kid! He does receive some special education services. He also needs to do his homework at school, because he is simply too tired to do it by the time he gets home. He needs to have some time with his family and some play time too! Braden doesn’t walk the hallways, but is pushed. I think he is looking forward to driving himself. Watch out Creekside! Thankfully he is a good driver! His new wheels will go from motorized to push so that he can go between the two when he fatigues. Speaking of which, he has a nap time built into his day. He will always need a nap. Be jealous if you must!

When he comes home he wants to play for a bit. This is a hard part of the day. It is where I watch how his playing has changed throughout the years. The ability to climb has gone. He now fears climbing as his faith in his body is declining. He worries about falling or making his limbs do what he wants them too. He often grabs a microphone and sings his heart out while standing in the middle of our backyard. The world is his stage at that moment. He isn’t worried about how he is hard to understand, concerned about bumping into people as he loses balance, he is simply a boy singing and being.

My heart often clenches as I think of what he has lost. I try to shove it somewhere to the back and focus on cooking dinner as I watch him through the window. That’s how it often is. I feel like I am watching him through a window, a lens of sorts. I can see how he hurts inside, but I see it through the eyes of his mother. I will never know what it feels like to be in that small body. To know the hurt of a body that is failing. Yet, I know what it feels like to be this mommy. That glimpse of him with his arms pulled up, body twisting in awkward directions, and voice that is beautiful to my ears pulls me to a standstill. I often feel rooted in my position. I am unable to look away. That is my son. This is his life. Emotions begin to roll. I can feel my chest tightening, my eyes sting, and I fight back the urge to cry. It’s just not fair. How? Why? Just no. No. No. No. He doesn’t deserve this! He should grow up like any other kid! My insides scream. Then I take a deep breath. He is here. I look at him. He is out there and happy. He is here today. I hold on to that with all I have. “Cook the dang chicken,” I say to myself. “Focus on making some darn good chicken and focus on what you can control,” I remind myself. Just a small two minute moment of my day, but it is still there as poignant as ever.

We all sit down at the table. Braden will eat part of his meal and then ask for help. I then set my fork down and smile brightly at him, “I was hoping you would ask me that!” I say. I then feed him his dinner. I feed my six year old his dinner. There is no sign of those private emotions from earlier. All he sees is pure love shining through his mother’s eyes. There is no room for pity, sadness, or anything else. He needs me in this moment. I will be right there for him. Whenever he eats, we must be present. He often chokes on his food. It is a disjointed way of swallowing. Getting your tongue to move just the way you want it to and coordinating swallowing is challenging. There is so much that must be done in perfect coordination. With a degenerating brain, it is often hard to get that sequence of events just right. So for safety, he gets attention while he eats. We call this a win-win as we get to have meaningful and fun conversations!

After dinner comes bath time. Braden cannot bathe himself. Firstly and foremost the task is just too tiring after a long day. Secondly, tremors make it tough for him to adequately handle the task. We help him navigate one leg and then the other into the tub where he joyously splashes water all over the place! After the suds are drained, we dry him up, dress him, and get him yet another snack. He burns through those calories fast with extra movements that he cannot control. Afterwards it is another round on the cough assist and time to brush his teeth.  We then snuggle in together for some quality family time reading, watching tv, or just plain talking. It is my absolute favorite part of our day. Those are the moments that fill my heart with such thankfulness that it could just explode. It is also the time of the day when Braden poses those tough questions. “Mommy, why can’t I be like everyone else?” “Why don’t my legs work right?” “Am I going to die?” All I can do in those moments is hope that I don’t totally bungle my answer and do more harm than good. Those are the nights that are hard to sleep. Our little guy has to scale mountains. We are there climbing right beside him though. It breaks our heart that he has to go through so much. It’s just not fair. Life just isn’t fair, and so we try to balance it out with beauty, laughter, and fun. I close my eyes trying to think of our next adventure and not giving A-T a second more of my time or attention. My eyes close and the day starts anew.

Whoa Ho Ho!

The holidays are definitely in full swing. We have entered the rungs of a family with an Elf on a Shelf. Oh how I swore I would never have one. Alas, the desire for more kid giggles trumps my not wanting to have to add another thing to our already full to do list. So, I have whispered in our Elf Frank’s ear that my children should be taped in their rooms tonight. Go big or go home, right? Speaking of home, things are always changing around here. I am really good about updating Team Braden Winks’ Facebook Page, but slower to get things here. Perhaps it is all that effort into making kids giggle that keeps me from typing away at my computer. Here is a quick run down on what we have going on.

Today is Wednesday. It’s not Hump Day here, it’s Infusion Wednesdays! That means Braden has an infusion of gammaglobulins to help bolster his immune system. He has no IgG2 or IgG4. This treatment is administered at home with a small infusion pump and a tiny sub q needle. The needle is placed just under his skin for about an hour once a week. This is Braden sixth treatment, and we can really tell it is making a HUGE difference! This has been his healthiest winter in a very very long time. Thankful! Thankful! Thankful! I am not thankful however for his huge emotional response to them. Will today be the day that I don’t have to physically restrain him? Please oh please. Six year olds don’t like needles.

We won the battle for a nighttime pulse oximeter with an alarm. It has gone off three times. Twice were false alarms courtesy of me. The third was an honest to goodness alarm. This would have been missed entirely if it weren’t for the alarm. I just don’t know what more to say about that. I didn’t ask for the equipment just to waste the insurance company’s time or money. This mucous plug situation is really no joke. You must act and quickly. So, yay for an alarm to alert us to a problem! Whoohooo!

Braden’s wheelchair is expected to arrive this month! This motorized chair should greatly increase his independence. It is bittersweet as his parents. We watch his balance and stability continually decline. Children with A-T typically plateau at age six, but unfortunately we haven’t quite hit that plateau yet. Braden is over six and a half. It is what it is, but is sure stinks.

Braden’s room renovation is moving along. It is taking forever, but at least progress is being made. Next up is the installation of the zero entry shower. We still need flooring, a toilet, grab bars, and a few other things. So, we are working diligently on that. We are all really looking forward to seeing the project completed! It will be nice to have a room that doesn’t look like a hospital regurgitated. Hopefully we can get creative and tuck the big machines away while staying accessible. Thank you to everyone who has helped make this renovation possible and in advance to those who will be helping in the future. It is genuinely appreciated!

We have a surgical consultation on the 10th for his fundoplication and g-tube placement surgery. I will do my best to update after that consultation. We are having a hard time consuming enough calories and are falling down in the growth charts. By no means are we emaciated but eating is an exhausting challenge with an intentional tremor and the effort it takes to chew and protect an airway. So, the feeding tube will give him some extra calories that he needs.

The Survey Says

Before I had children I had all kinds of opinions on how they should be raised. More accurately, how I was going to raise mine. Then I began raising them and realized that some of those lofty ambitions and grand opinions were not really feasible in the real world. Each of us must find our own parenting style and a comfortable family rhythm. I came to learn there was no “one size fits all” parenting. Simply put there are just far too many variables. I had never envisioned what things would be like on this side of the table. Where it feels as if everyone has opinions on how you should be doing things. Perhaps this problem is exacerbated for us due to Braden’s medical situation. There are no shortage of opinions on that front.

 I always listen to people’s suggestions regarding parenting. Most of the time, folks offer opinions from a good place. I don’t always take suggestions, but I do tuck them back in case my circumstances change and I may need to use them. Other times, I find that the suggestion was a great one! Though lately I have felt as if those opinions are weighing far too heavy on my heart. I feel some comments are coming from a judgmental place. I find myself doubting my abilities as people are doubting my decisions regarding his care. I had myself a real good cry the other day and realized that the problem wasn’t me. As Braden’s health declines I find folks really trying desperately to hit the breaks. Yet his car continues to race onward to the finish line. Instead of hitting the breaks, I am just tightening my seat belt and doing the absolute best I can to make sure we are as safe as possible to enjoy the ride. The problem is that this leaves those hitting the breaks behind us. This ride is scary. The scenery is not always pleasant. Yet, I truly honest to goodness weigh each road we navigate down with as much consideration as time will permit. I make more phone calls to doctors than I ever thought I would. I seek out other families who are also speeding down the same highway. Yet, there are those who simply cannot understand why we make the decisions we do. It makes me so very sad and sometimes rather lonely.

I often write letters to myself for after my son’s passing. Those letters are in an attempt to help myself heal. So, here is today’s.

Dear Self,

Today you left yourself rather depleted. Your emotional bank is overdrawn. You really must work on that Dear. It is time to make a deposit. You spent an hour on the phone with the neurologist and over two hours comforting an overwhelmed friend. You spent another hour working on Braden’s room preparation. The truth is you are trying to juggle a thousand balls and make sure not a single one hits the floor. If you only knew that that is just a silly thing to even bother attempting. Why don’t you set some things down?

I know you have second guessed many of Braden’s medical care decisions lately. Just remember that you spent hours consulting many many specialists. You researched until your fingers hurt. You reached out to other A-T families for advice. You talked over these decisions with your husband. The survey says that you are on the right track. You are doing everything you know how to make him as healthy as possible for as long as possible. You are doing everything in your power to help make him strong, happy, and as independent as possible. You have allowed naysayers to make you second guess, but here I am that strong and constant part of your Self that is here to remind you that you are strong, capable, and intelligent. Hold your head high and be firm in your convictions. You work hard to make these decisions. Have a little faith in yourself. You’ve got this. No matter what look back and remember you did everything you could. Be gentle with yourself.


Your Self


I will try and say this as sweetly as possible considering you weren’t the offender. Consider this a Public Service Announcement of sorts. I will openly admit that I have a button. We all have a button that if people push, we could very well just lose it. My button just happens to be bigger than most and easily results in a less than pretty set of tears and plenty of eyebrow knitting. If only I were a pretty crier. *sigh* Something to aspire to I suppose. Anyway, this doesn’t just apply to parents with terminally ill children but to all parents of special needs children.

Here goes…

Things not to say to us:

1. Anything that starts with, “Have you tried.” No matter what the try is, please just don’t. If that thing worked, this condition wouldn’t exist anymore.

2. “I just know they will get better.” Unless you have a crystal ball that works, please just stop. You don’t know. If you do, then you must be some superhero who could stop crime before it stops! Now that would be a skill! At least a better skill than upsetting parents with special needs or terminally ill children. We work HARD to come to terms with what our reality is. Please don’t step in and rock our boat. We work hard to keep it balanced.

3. Anything that involves God or Jesus unless you know that person’s religious beliefs. Just remember this argument in itself is a slippery slope. You may talk about “His plan,” but remember that plan will involve the death of a child (at least in my case.) What parent wants to hear about that plan? While these words may be comforting to some, they are not comforting to all.

4. Please don’t proclaim that miracles happen. Yes, I am well aware that they do, but in my world I can’t bank on one. I can’t put hope in that bucket. I must plan for the worst. My reality is that I will bury my child. If a miracle happens, allow me to be surprised by that. I would rather that than vehemently believe a miracle will happen and then be blindsided when it doesn’t.

5. Never ever say, “I know how you feel.” Well, unless you too have a child with the same special needs or have lost a child (not a parent, sibling, cousin, friend…a child…YOUR child.)

6. Do not ever tell that parent how he or she should feel. Do not say, “Be positive!” You may have caught us on a down day or perhaps we are just doing our best to cope on that given day. We really don’t need to be chastised. Walking in our shoes is tough! We can’t be sunshine and daisies every minute of every day. I can bet you aren’t! Besides, I am as ridiculously positive as they come…annoyingly so.

So, now you are scratching your head and wondering what you are actually supposed to say. Well, we parents are all individuals and each need something different. We get different things from different friendships. Sometimes, simply a hand squeeze and no words does the trick. I am always appreciative of a, “That sucks.” However, I am blunt like that. It does 100% and I appreciate the acknowledgment of that. “Is there anything I can do to help?” works well. “Tell me more?” and then listen sincerely is a sure bet. If you mean it, “I’m here for you.” “It sounds like you have a very much loved child,” is nice to hear since we typically bust our tails to care for our kids.

So, just to recap. If you overhear a woman telling an instructor at the gym that she is sorry if her phone rings but you can’t turn it down all the way in case there is an emergency with your medically fragile child, then hold on to that information for over a month, and then spring it on her out of the blue while she is preparing for class…yeah, bad idea. Then, proceed to say the above numbers one through six, expect that woman you blindsided to want to knock you over while you are in balanced half moon. You will have earned it. Alas, I am too nice and instead practice my expert eye rolling skills and deepened my forehead butt. You know what I am talking about. That lovely crease from pulling your eyebrows together accompanied by the eye roll you mastered as a teenager or perhaps four year old if you are my daughter. Just please remember that people have fragile emotions. Be gentle with each other. Sheesh, this is my son she was talking about. If I can create a miracle, sacrifice myself, do absolutely anything to save him I would. *sigh*


I have a butterfly in a world of moths. Sure, I expect many would believe I should think of things in a reverse sort of way as in my son is a moth in a world of butterflies. I think not. You see, he is beautiful. He stands out against the crowd. Sure, it is for reasons some may deem less than ideal. However, that uniqueness makes him even more cherished. Being strong, charismatic, and resilient in spite of those differences makes him…Oh, I don’t know the right word. Just…more.

We have had to test our mettle a bit more than in the past lately. We will soon start SCIG treatments to help bolster his immune system. We are replacing his little dagger with a big ‘ol sword! We are hoping this will reduce the number and intensity of his illnesses from here on out. This will involve sub cutaneous infusions for an hour or so weekly. Braden is angry with us about this, but it is just an “is.” We start in about a week or two.

Lately, Mr. Braden has been rather emotional about all the changes happening in his body. We have noticed another “new normal” has been reached. Climbing up and down ladders is becoming truly difficult and navigating his environment requires him to find something solid to hold on to more and more. These are just outward signs of his deteriorating cerebellum. That’s the balance center of your brain. His wheelchair is due to arrive around Christmas. Then we will start his driving lessons! My toes are a bit concerned as they will certainly be broken should he run them over!

We are in the lengthy fight to get a night time monitor with an alarm for when his oxygen saturation levels fall. If we aren’t aware and he get a mucous plug, that could lead to prolonged periods of low oxygen. This could cause organ and brain damage. This is 100% not acceptable. So, Blue Cross Blue Shield, let’s get over ourselves and do what needs to be done, ok? This Mama Bear doesn’t wish to show her claws.

We are desperately trying to complete Braden’s room. We need folks to hang sheetrock, put down flooring, and so much more. If you have a talent or know someone who does, please send them our way. We would greatly appreciate it. We are holding our breath and hoping to not run out of money and that situation will  only be worse if we have to hire folks. The clock is ticking for us. We are running out of room to store medical equipment.  

Well, off to run children in their respective directions. Until next time, hug those you love!


*No time to proofread! Sorry!