Battles against terminal illness, anxiety, and life!

Archive for the ‘Typical Day’ Category

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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What it’s like to raise a terminally ill child?

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.

Afraid of Me

“Mommy, why are people afraid of me?” Braden innocently asks indignantly with his brows pulled together forming a matching crease down the center of his forehead to my own. Squirming a bit at being put on the spot during such a critical moment, I stall to come up with a good answer. “What do you mean?” I ask to make sure I don’t make a mountain out of a mole hill. He shrugged his shoulders and said, “E can go places and I can’t.” It was so black and white in his eyes. The complexities that play out in the hearts and minds of grown ups simply isn’t understood. I took his small hand and hugged him. “I wish I knew Sweetie,” and kissed his head. “Sometimes you have a hard time breathing and that scares some people. We just have to find the cool people that don’t mind being brave when it gets scary. Want some ice cream?” Yeah, I know. Ice cream doesn’t fix anything but it sure did help redirect and keep me from crying. For Braden there is no such thing as a “typical childhood.” Thankfully Braden doesn’t dwell on these things for too long, and we managed to have a nice day together. Well, as nice as it can be considering it mainly consisted of doing laundry and such.

“You know what I want to be when I grow up?” Braden asks from the back seat of our van. I smile even though I know he can’t see me. I have trained myself to do this so that my words won’t come out strangled like the feel on the inside but rather cheery like every mother listening to their child dreaming about their limitless future. “I want to be a pilot!” he declares. “Why’s that?” I query. “Planes are really cool, and I can take us places!” he informs us. I reach my hand over and squeeze my husband’s leg. While the “What do you want to be when you grow up?” conversation is always hard. This declaration really hits my husband hard as he is former Air Force and has a fierce love of planes. He placed his hand on mine giving it a squeeze and we both said, “Very cool!” in unison. Then Braden started chattering on about heading to his Nana and Papa’s house to go swimming. It breaks our hearts knowing that Braden won’t be able to live out his dreams the way a typical child can. However, that doesn’t mean we can’t be creative. He may never be a pilot, but that doesn’t mean he can’t use his mind to do so many other amazing things. Perhaps he will write songs, invent something, or any number of things we have never even considered. We choose to focus on that over the overwhelming hurt of option B.

We can tell that neurologically Braden’s condition is deteriorating. He knows. He knows. His condition doesn’t affect his intelligence, and he knows that at six he should be able to know when he needs to use the restroom. While he has always been urinary incontinent, his episodes of fecal incontinence are increasing. The shadows behind his eyes tell me a story of a child that is confused. His body language screams that this isn’t fair, and I tend to agree. I brought him into the bathroom and shut the door for some privacy for him. He had tried to clean up the mess that hands plagued by tremors created while disrobing. I sat on the side of the tub, not really caring about the smell or mess. I looked my little boy in his big eyes and said, “It’s ok. It’s just poop, and it isn’t your fault.” “But I can’t feel it when it needs to come out!” he protested. “Yes, that’s why it isn’t your fault. We all know you didn’t do this on purpose,” I remind him. *sigh* The next thirty minutes were spent steam cleaning, disinfecting, and cleaning up the aftermath, and Braden painfully apologizing.

I sit here and hope that I can just not bungle this up. I want so desperately to make sure that Braden never falls into a victim mentality, that his self esteem remains high, that he never loses that twinkle in his eye. While he is afraid that people are afraid of him, I am afraid of me. I am afraid of not having the right words when I need them most. I am afraid that my strength will falter. I am afraid he will see through my façade and see the scared mother I am on the inside.

Have a Seat

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.

Coping

If there is one thing about A-T that you have to learn, it’s how to function while living with it and its challenges. The challenges that our children face are enormous, but those challenges aren’t self-contained to the child who has the condition. The siblings must learn to cope with having their parents unavailable as they have no choice but to help their son or daughter who cannot do for themselves. We do our absolute best to make sure that our daughters understand this, and we make sure to spend special time with them. Then there are the parents who have a continual brave face and must be ready to spring into action like a superhero to the rescue. While I have yet to master leaping over small mountains or scaling buildings, I am rather adept at the scoop and spill. That would be the “He’s going to blow!” manuever when Braden is about to vomit on everything in sight. Then there is the mental coping. How do you learn to cope with something that is “faceless” that is attacking your child?

Oh, you think I have the answer? Now that’s funny! I have no answers because it is different for all of us. This morning Braden vomited all over the bed. I swept him off to the living room while my husband started changing sheets. I redressed him while he put those sheets in the laundry. I cleaned his face while he got him a drink. It’s a team effort in this house. Then he started breathing rapidly. I asked Braden if he could breathe and he shook his head no. I got the inhaler while Justin grabbed the spacer. As I was administering the medication he got the pulse oximeter. It was a seamless dance we did this morning. Like a ballroom dancer executing a waltz, each of us moving in perfect rhythm. Just like that dancer, we weren’t born knowing how to dance this way. Rather, we have had to learn. We have gotten the steps, we have learned the routine, but we both know that soon we will find ourselves attempting to Foxtrot. That would mean learning a new dance and routine. The difference is we now have basic dance moves down. It’s slightly easier to adjust when you know some of the basics. It’s something that is learned. To my sweet new friend with a son who is just two and has learned her precious son has A-T, give it time. You will find a new way of doing things. You will get frustrated, angry, so very sad, but you will also find your rhythm. You will find beauty and grace. It will just take time. They say time heals wounds. I say that while wounds may heal over time, the scars of A-T shall forever be written on our souls.

Every Day is Different

This morning I gently woke Braden up as I do every single school morning. I turned on the side lamp and started disrobing him. So, perhaps the gentle bit was an exaggeration. Regardless of how I wake him up, the point is I am waking him up. That is never a pretty scenario. So, better to just get on with it. His pull up, due to urinary incontinence, is removed and changed. I slug on his pants, pull on his shirt, and put his socks on him. In many ways this is no different from any other parent. Today though it hit me, this is a forever routine.  Gone are the days that I dress his younger three-year old sister, but here I am still dressing him at five years old. Sure, if I give him about thirty minutes he can dress himself but by the end he is absolutely exhausted. That’s how A-T hits you, little punches here and there. While they don’t bring you to your knees, they do affect you. It’s as if the color gray was added to the rainbow. While it would still retain its beauty, the balance is completely thrown and just feels off. Today felt that way to me. It was a beautiful day but tinted with a bit of sadness.

Tomorrow we have a follow-up appointment from Braden’s scoping procedure. I am hoping to give you the run down then. For now, I want to go snuggle up next to my curly-headed little man. I am going to sneak in there, cuddle up next to him, smell his hair because that’s what sane moms do, and give him a much-needed kiss good night.

 

Transitional

When your child is an infant and they learn to take their very first steps, you are consumed with overwhelming excitement. It’s amazing to watch them learn and grow into such adorable little wobblers! There arms pull up and out to help balance their still shaky steps. You wildly snap photographs that will forever be cherished. Another amazing milestone is accomplished and as a parent we couldn’t be any more proud! However, even with this new-found independence, they are still heavily reliant upon their parents to tend to their needs. You still briskly push them in their comfy stroller as they absorb the world around them. It is full of such hope and promise.

Now imagine never leaving that place. Your child has outgrown the stroller, yet still they wobble and pull their arms up. They are still so intelligent and you full of pride. You still wildly snap pictures and cherish milestones. Only now you wish the entire world could see your child through your eyes. The visions of a parent with a child who has special needs. You wish they could only be there to hear that witty comment, that precious moment, and that excruciating medical appointment. Those arms pulled up are no longer for balance but due to fatigue and deteriorating muscle. Their intelligence is masked by a face that doesn’t readily show their emotions and by the bias of the public of the mobility devices that helps gain them a smidgen of independence. Their milestones are no longer in stride with their peers but on their own time frame. You simply become your own little world.

Our little world is in a state of transition. Strangers now take notice of our five-year old riding in what appears to be just a stroller. The strange look of passer byes doesn’t go unnoticed. We look like indulgent parents with a lazy child. Oh how I wish I could just sit down with them over a nice warm cup of coffee and just talk. Listen to their challenges and share our own. Remind them how easy it is to make snap judgements and how critical it is to try to keep an open mind. There will always be people who will never be able to see past the surface, but if only we could reach out to those that can. If they only knew just how hard both our child and we work to keep everything in order, to make it through each and every day, to make complex medical decisions, to make your child’s educational experience the best it can be. If they could only feel how heart wrenching it is to soothe a child who is having the eleventh tube of blood taken, to carry their sedated child to an MRI machine, to cart them to the doctor yet again, to go through two boxes of tissues a week for months on end, to worry if this infection could turn lethal, to know that you will have to make end of life decisions for your child, to know that your child will not be fulfilling all of those dreams you thought about as you rocked them to sleep as a newborn. Just how do you cope with all of that?

You see my child’s world is still full of hope and promise! He is still soaking up the world around him. I just still have to tend to all of his needs. He will always need my help using the restroom, to shower, to prepare his meals, and to eat. He will not be afforded the same level of independence as his peers, but that by no means will diminish the meaningfulness of his life, the vibrance of his soul, and his need for love and acceptance. We cope every single day differently. There is no magical formula on how to raise a child with a terminal condition. There is not a single day that goes by that we don’t notice our son’s extra needs. They change from day-to-day, and we have to be cognizant of his ataxia, tremors, fevers, food intake, and numerous medications. However, that doesn’t mean that every day it beats us over the head with a hammer. There are days though I wish somebody would, because it can leave you numb, hollow, scared, and so incredibly sad. Those days we just snuggle up real close, take a deep breath, and kiss the top of his curly little head. He is here today. Thank goodness we had one more day. There are days where only tears will do. Then there are others where we are too busy pretending to be snakes, frogs, and kangaroos to worry that we may not be able to do this sometime soon.

Grab ahold of what is good about every day. I will never ask of anybody to not complain about the small things. Just this morning I lamented the fact that I didn’t get that second cup of coffee that I really wanted because while I was busy dealing with a mountain of laundry, the coffee pot turned off. Alas it was cold and I never managed to reheat it. Life is just messy in that way. Just remember what truly matters, give others a bit of grace, take the moral high ground, be the first to offer assistance, be courteous of others, and to be thankful for another day. Oh, and if you are given the chance, smile at a child in a wheelchair, hold the door for a mother who is pushing a large stroller, and try to give some space to those who need to park in handicap spots. They are small things that are free and make a big difference in our world!