Turning on my heel my feet slipped in the water left behind from a leaky sippy cup falling flat on my back on our kitchen floor. Typically moments like this lead to a grumble that leads to a laugh because that’s just how we roll. Today was different though. Like a catalyst, it unleashed tears that just wouldn’t stop. There they were hot, salty, and rolling down my cheeks. The emotional release valve. At that moment in wandered in our four year old, Eve.

Evie came in an wrapped her slender arms around my neck and said, “It’s ok Mom. I am right here. Shhhh.” She assumed the fall had elicited the tears. Just as when you argue with your husband about leaving his socks on the floor, it’s often not the real reason behind the rebuke. I’ve had to talk a lot about A-T in the past few weeks and months. Perhaps watching the awful tornado coverage from Oklahoma and the loss so many other parents are experiencing upped my emotional response. I guess that emotion just needed to go somewhere. So, I let my sweet little girl hug away her mommy’s tears. We are all “in this” together. One day I will be there with a truck load of tissues for her. In the mean time, I am thankful that she can see that her mother can be vulnerable yet still strong.

There is something about a terminal condition that brings people together. We are in the same ship. We are all a part of this plot despite playing different roles. Today my spitfire Eve was my little hero.

In other news, we are making great progress on lining up supplies and labor for Braden’s new handicap accessible bedroom and bathroom. We have all been working tirelessly towards making this a reality. Thank you to each and every one of you who has helped!

We are going to fulfill another one of Braden’s bucket list items by heading to Nashville for a concert! More details as those unfold. We also enjoyed horseback riding a few weeks ago at Victory Alliance Ranch!

My little boy is six. When he was two my husband waved the white flag and put him in our bed. Nothing we did worked. He ended up sitting in his room for hours ignoring him, he tried slowly moving out of the room, nightlights, complete darkness, sound machine, and so much more. He needs to be in his own bed for his safety. Separating is hard. However, the sooner this room is complete the sooner I can get him to stay in his very much necessary hospital bed.

Our biggest struggle lately has been when Braden is waking up or going to bed. He coughs. Not just any cough, the cough that makes you sit and hold your breath. You watch and wait because that is all you can do. You sit back and hope that the cough subsides and he catches his breath quickly. It’s a hard way to start and finish your day. Each and every day, he gets scared. I get to pretend to not be scared. So separating him from my room will be just as hard for me as it is for him. Yet, it is a task we will work through together.

I have visions of myself pacing past his room to make sure. To make sure he is ok. To make sure he is breathing. Can we go back to age two again?

I pulled my chair in towards the table and asked Eve, “What was your favorite part of your day today?” “School!” she responded with great enthusiasm. Keeping the children engaged at the dinner table is the only way to keep them there. We’ve worked hard on making meal times happy. Braden used to rail at them. We’ve gotten to a place where he is comfortable trying to use silverware and accepting of when those attempts often fail. I moved on, “What was yours Braden?” “Right now,” he responded. My whole heart smiled at the beauty in that statement. Every day we strive to make all three of our children feel just how loved they are, how special, appreciated, and amazing. We want them to feel a sense of belonging. This is their place, their safe place, their home. How thankful I feel that these small people are growing and learning that while life may be tough, they will always have us to be there for them.

Later that night, I laid my head down and quicker than a blink the thought popped into my mind, “What will you do when his place at the table is empty?” The thought wasn’t completely unexpected. I had volunteered at lunch to watch the children so that the amazing teacher got a well deserved lunch off. I turned my head for a moment to make sure that all were accounted for and all was well, but when I turned back to look at my son…my sweet boy…he wasn’t breathing. “Are you ok?” I ask to see if he could speak. He shook his head no. That’s when motion started. I wrapped my arms around his stomach and pulled him up out of his chair eliciting vomit. For the love of vomit. At least there was movement of fluid. He covered half of his lunch in it. Then he hit the floor with some more and breathing commenced. That’s the way it is with Braden. One minute he is just fine and the next everything is going really really wrong. When people ask how long Braden is expected to live, I really just don’t know what to say. All it will take is one missed moment where he can’t breathe and we will have one less seat at the dinner table. Living with that uncertainty is unnerving. It is why we don’t wait. It is why we do everything right now. It’s easy to say we should live as if each day is our last, but that simply isn’t practical. So, instead we live each day as if it counts. We make sure to sit down with each child and connect with them. We don’t let the day pass without meaningful moments. So, what will I do when there is one less member at our table? I have no idea. All I know is that I hope that it doesn’t happen for a very very long time.

We spent the past few days aboard Disney’s Dream cruise ship. What an amazing experience! The moment you step aboard you are swept up in the magic that only Disney can create. The marble floors, the elegance, the grand scale, the announcement of your family’s name and clapping by rows of crew members to celebrate  your arrival, it all surrounds you in happiness. The trip was gifted to us and what a gift it was! The gift of simply watching my children be children. To see their faces light up when they saw Mickey or Minnie, to see them laugh at Pluto during Pluto’s Pajama Party, to hear them tell how they made cookies or were toy soldiers was priceless!

While the Aquaduck is not handicap accessible, something that we even pointed out to the captain, we were allowed to be the first family each morning to ride it. For those who aren’t familiar, the Aquaduck is a waterslide/roller coaster on board. It is simply amazing! So, we took turns hauling Braden up the 71 stairs to the top each morning. His squeals of excitement made each step worth it! We also had an amazing experience with Mickey and the gang! We aren’t exactly sure who arranged for such an amazing private and personal meet and greet but it is a moment I will never forget. Braden was a bit stone faced at first, but then his smile swept across his face. He was so excited after they left. The entire night he was such a chatterbox! Today he said, “Mom, remember that time I got to meet Mickey, dance with Minnie, and hug Chip and Dale?” I couldn’t help but laugh as it was only a few days ago! Since there is no way to relay all of the amazingness, I will do it in pictures.

That smile says it all!

Hugging Chip & Dale

Dancing with Minnie!

Going down the waterslide together.

Tram to the beach (2 minute ride) on Castaway Key (Disney’s Private Island.)

Pirate Night!

Braden loved Pirate Night!

Even the pictures on the wall are interactive! We were searching for the lost puppies from 101 Dalmatians!

This boy loves cruising. Perhaps the gentle motion of the boat is balancing. Perhaps it is the warm breeze, palm trees, sand in your toes, and just the love of vacationing. Regardless, he can sit and watch the world drift by for hours. He loved these mock portholes.

I tapped the screen on my phone as if hitting the screen with a little more gusto would magically make it spring into action. Much to my dismay, it simply fluttered and just might have sighed. I held down the power button and the phone chimed as if saying, “Thank you for this forced break!” That was my brain last night. After listening to my sweet boy tell me he loved me to the moon and back one million times, I just couldn’t sleep. Every now and then my brain decides to reboot. It takes that moment to update, process, and get back up and running.

A process. Absorbing the changes that A-T brings into your life, how it affects you, your child, and your family, that’s all a process. It’s what keeps me up at night. So much has changed not just in the past few years but in the past few weeks. You can only set it aside to deal with later for so long. You eventually have to feel what has happened. All I wanted was to sleep but all my brain wanted to do was process, mull things over, and refused to budge. I couldn’t dial in to sleep, I had to hit the reset button. That meant convincing my head to do so.

In light of the past few weeks, we had to take summer day camp out of the equation for Braden. “What if his airway needs suctioning? What if they don’t recognize it? The nurse could be forever away at such a large place,” battled, “Yes, but he must live as normally as possible! He will have an aide who could get him to medical attention as quickly as possible.” Alas, the battle against camp won. We will find a way to make it up to him, but I can’t stand how unfair it all is for him. His health and body are failing his smart and spunky little self.

Reboot. Recharge. Ready for another day filled with adventure!

 

Thank you Cait for your sweet email last night! I would be happy to give everybody an update on Braden’s health. Since this is more nuts and bolts, I hope you don’t mind the bullet point style type update. While my emotions are more free-flowing, I “handle” the medical situations in a more tactical type manner. That’s just my self-preservation kicking in!

• Pulmonology: In short, it’s an issue. What used to just be a coughing until we vomited situation has now become a mucous plug problem. Braden’s lungs produce mucous like a Cystic Fibrosis patient. He attempts to cough but his lungs aren’t as strong as a typical child. The mucous gets stuck in his esophagus that is too soft (tracheomalacia.) So, the mucous creates a plug making it hard for Braden to breathe. We are working on this situation. While there is no medication that can assist him that we are aware of, we are looking into  cough assist and percussion vests. This will be in addition to his inhaler, hand held percussor, nebulizer, and suction machine.
• Immunology: We have been in a sinus/ear infection cycle. Due to his IgA deficiency, Braden has excessive nasal drainage. The stagnant nature of it causes it to fester in a manner of speaking and it becomes infected. We are hoping that this last round of antibiotics does the trick for at least a few weeks!
• Gastro: We are continuing to deal with our normal bag of tricks in this realm. We have noticed a slight tick up in the amount of fecal incontinence issues here.
• Orthopedic: Braden’s feet are turning inward a bit more than they have in the past. We continue to stretch his legs. No medical intervention or devices are needed for this at this point.
• Mobility: We continue to fatigue more rapidly than before as expected. Braden uses a chair for distances but is ambulatory during play and for short distances. We have shown an increase need for assistance with smaller tasks.
• Neurology: We have noticed a slightly longer delay in responding to questions. This is due to the deterioration of his cerebellum. We continue to have the same difficulties with tremors and such.
• Cardiology: Knock on wood. Still all good here!
• Nutrition: We have not gained weight in a year and a half. This is largely due to the extra movements. Children with A-T move continuously to counterbalance their ataxia. This burns calories. It also takes more effort for our children to eat burning more calories. So we stuff as many calories into him as we can. There is always a green light to feed him those foods in which most parents would say no.  At some point we will be “forced” into considering a feeding tube to get that critical nutrition.

In short, how sick is Braden? It’s hard to say. The breathing issue is our biggest area of concern. It takes diligence. We have to pay attention. One ear must always be trained to listen. We do our best to simply live as normally as we can. We have days where everything is just fine and then “boom” we have a breathing situation and those moments are very critical. Then there are those days where you would swear something could easily go wrong and everything is just fine. So, you just never know. There are a few things that lead to death in our sweet children: lung failure, infection, and cancer. Despite the writing on the wall, we are doing all we can to focus on the LIVING and LOVING life. It isn’t uncommon for Braden to not be able to breathe, cough, vomit, and look like hell, and then just minutes  later be a giggle machine. May that never change!

Please hug the people you love and tell them so! Life is a gift and not a given.

Hugs,

Becky

Raising a child with special needs is like you and your spouse being plunked into the middle of the ocean and being told to tread water until a life boat arrives. You can handle the fear of what could happen. You can still communicate and see each other, but you both have to work hard at staying afloat until that life boat arrives. So you never really get to connect because you are too busy trying to survive. However, eventually fatigue sets in and your muscles just can’t do it any longer. You have to do something or you will drown. That’s me today.

It may be “normal” in our house to have to clear an airway in one way or another, but that doesn’t mean it doesn’t cause an insane amount of stress. Sure I can take it in stride, but that stress has a way of building up to a breaking point. We have reached a point where there is nobody that is willing to watch our son out of fear. That simple fact is heartbreaking in itself. I understand that fear. I can’t say that I would want to take on that scary task either if the tables were turned. So, please do not misunderstand me. I am simply saying that we need to find a life boat. Not just any life boat but one that is skilled in this sort of journey.

If you know a nurse that is willing to be an occasional paid babysitter, please let us know. This is not directed at you Nurse Missy. We know you have two busy kids at home still!

Thanks!

The kids were all in bed and I sat very quietly in the glow of the television not really listening. How am I going to fix this? I know I can’t fix the medical condition, but how can I help him? Things had been so worrisome. Braden was angry and resentful of his sister’s budding skills. She had begun doing things he simply can’t and probably will never be able to do. He was being lapped and couldn’t do a thing about it. He would get angry and look lost. He had nowhere to go, nowhere to be. “Go to your room,” I told him when he would start yelling. “I don’t have one!” he yelled through tears. So, there I sat hours later wondering just how to make it better. That’s when I remembered a fellow A-T family who had reached out to Special Spaces. Over the past month, I have encountered so much along this journey, and I would like to take a moment to respond.

We have been surrounded with much love and support within our family, friends, and community. We feel thankful. Parents of children with special needs can often feel isolated. Our stress levels are that of those serving in combat situations. We don’t get many breaks from the stress as it takes a special person to be able to watch this brood. It’s a job we wouldn’t trade for anything, but it does create a life that we never would have imagined. So, that support truly lifts our spirits and helps us push through the tough times. We adopted transracially and have had our fair share of insensitive comments. We have met those comments with ease as we were prepared for them. We no longer notice the stares, smile at the curious, and have a solid family identity. At times we have been thanked for adopting a child through Social Services. We fully admit we have no halo, and adopting Braden was one of the most selfish things we have ever done. We didn’t do it to rescue some poor orphaned child. We wanted to become Mom and Dad. It’s as simple as that. He is our miracle. We are fortunate to have him. His adoption story is one of his favorites to hear. We did not know Braden would face these challenges, and I am always curious why people would even ask if we would have adopted him had we known. Those aren’t shoes we walked in and so I wouldn’t know the answer to that. The fact is, we learned of his condition the same way any of you would have learned had your child had it. You don’t return your children and he is our son.

We have encountered people who have been so extremely generous. Those people deserve more time and attention than those who have not been. The news is always full of bad news. Stories of the horrible things that happen in this world dominate the channels. I don’t wish to do that here, but I do need to address a few things. It takes considerable courage to pick up the phone and call somebody that you do not know and ask for help. There is a great fear of rejection and of just not knowing what will be said. Not everybody in this world is sympathetic, takes care with their words, or remembers their audience. I have been hung up on, asked if I was a scammer, told I was exploiting my child, and told that it was people like us that are “leeches on society.” It is my pure and unconditional love for my son that pushes me forward to make this right. I have tried to explain that we have searched for grants, saved our money, and if we could do this on our own we certainly would. It isn’t easy knowing that you need the help of the community to do what you need to do for your child. After all, it is a parent’s job to provide for their children. That job was redefined for us a thousand fold the day he was diagnosed. So, we had to get over ourselves and do what we need to for his sake even if that means encountering hurtful words. We do not feel entitled. We do not wish to exploit Braden. We simply want to provide him with what he needs. Even when his room and bathroom are complete and once he is wheelchair bound, he won’t be able to access any bathroom other than his own or any bedroom but his own. Could you imagine that being your best case scenario? That is our reality. It is what it is and we focus on the positive.

We don’t crave pity or attention. There have been a few bad apples that spoiled the barrel before us. What we do want is for people to understand, to listen, and to perhaps take a moment to reach out to not just our child but to anybody who is different. We ask for people to step outside their circle. We are all more connected than you may think. We ask that you take just a few minutes to watch a video about Braden and to learn. We ask that you talk to your children about people coming in different packages and how the packaging is less important than what is inside. We ask you to not just say that but to live it. To learn that having a mobility device does not diminish one’s intelligence. We ask that you encourage your children to say hello instead of staring, to befriend the child that is different, and to stand up for those who need them to. We are not leeches on society. We are parents doing what we have to do to help our child. We are you had your circumstances been different. We aren’t faceless and heartless people looking to profit off of our sick child. Words hurt. Word hurt a lot. This is the last time I shall address the hurtful comments along this journey. They don’t deserve more of  my time or attention. I don’t need praises from those reading this. We are normal parents put in extraordinary circumstances. We get frustrated, we dole out time outs, we lose our temper, we sometimes spoil them rotten, and act just like every other parent does. We just also happen to have to do things that are very very scary as well and live in a world where you can’t really know what will happen from one moment to the next. So, please just tell somebody that you love them today. Make an effort to say something nice and bite your tongue before saying something you probably shouldn’t today.

Sending you all love,

Becky

For twenty minutes he looked me in the eye and told me how to save my son’s life. His mouth moved and words flowed out with such ease. It was as if he was explaining how to make a peanut butter and jelly sandwich for him while I was hearing the recipe for a fancy foreign French delicacy. “Be careful to not suction on the way in or attach to the sides of his esophagus,” may have been a complex chemical equation. “If the catheter comes out of his mouth, pull out and reposition,” made me do the heebie jeebie dance. The catheter is sent down his nose into his esophagus to remove mucous blocking his airway.  I am not a nurse but am tasked with performing medical procedures to save my child’s life. Twenty minutes of instruction, zero practice, and must perform it with accuracy or live with serious consequences for the rest of my life. No pressure, eh?

I woke up early this morning to head out to the local gym. They provide sitting services, and we can typically bring Braden if it is early enough in the day where his legs still function properly and he has enough stamina to handle it. That is unless we have a morning like today. It is only 7:45 in the morning and have already performed chest physical therapy to get his oxygen saturation levels up to where they should be. In short, my child was having a hard time breathing. Breathing issues mean no gym. Braden was looking forward to playing and I to exercising. Of course, I have to leave the class every so often to go and check in. However, his sister is now really good at knowing when something is wrong and can alert people to when he needs medical attention. There is comfort in that and deep sadness. Today I nearly had to pull out that intimidating suction machine and attempt to clear my son’s airway. Alas, I manage to dislodge the mucous and life went on as if it had never happened.

A-T changes our lives in such challenging ways. We can’t just turn on music and clean the house. One ear must always be trained to listen for that specific sound Braden makes when a coughing fit is about to happen, or when he is about to vomit, or when he is sucking in to get enough air. There are many many things we just can’t do, but there are many that we can. So, instead of playing at the gym we are having a tea party and playing dress up. We may bake cookies, play games to clean the house, have a popcorn movie watching party, and Nana and Papa are coming over to play. We focus on those good things. We stay positive. Remember that old analogy about the glass being half full? Well, we are those people. However there is also the story about how it doesn’t matter how full the glass is. If you have to hold it out in front of you for a long enough time no matter how full it will be too much weight to hold. Sometimes you just have to set your glass down and feel your way through this mess.

So, I made myself a second cup of coffee and gave myself twenty minutes. Twenty minutes to reposition and redirect my brain. I let myself be grumpy for a moment about not getting in that workout without guilt or feeling selfish. I allowed myself to feel nervous about under qualified to handle the tasks I am forced to face. I allowed myself to feel sad for what appears to be a very new normal in our lives. I acknowledged just how scared I am and to hope for more courage and strength. Then, I took a very deep breath and closed my eyes despite the loud click clack of play high heels traipsing through the house and pretended to be on a beach with the sound of waves gently crashing on the beach. Another exhale and I set all of that down. They are only little for so long, and in Braden’s case here for so long. I do not want to spend that time living not fearing, loving not angry. So, it is time for me to go find a princess crown and have us a royal parade if the subjects will let me!

 

This is a new video about Braden. Please watch and share.