One thing I have recently learned in my journey raising a child with disabilities is just how much communication there is without uttering a single word. My daughter Stella is completely non-verbal, but that definitely does not mean she does not have a lot to say.

It was a lot harder in the earlier days trying to understand her wants and needs without the typical ways of expressing them. It was a ton of trial and error that left us both really frustrated. I am not going to lie, there were a lot of tears shed on both of our ends. 

As time passed, I began to become more in tune with what she was trying to express to me. The certain little noises she would make to let me know she was tired or hungry. The sweet little happy coos when she is particularly happy with a situation, which is like music to my ears. The loud burst of squealing laughter when she can not contain her amusement any longer. 

She has become so expressive with her eyes.

Gazing towards things of her interest bright-eyed, or a furrowed brow when she is no longer interested. Heavy slow blinks when she needs rest. Sometimes I feel like we have such in-depth conversations with our eyes alone. 

We are working on new avenues of helping her communicate on a more specific level. We have been working with adapted buttons that allow her to express when she wants more of something or when she is done. We are also working with an eye gaze device. She can use her eyes to move the mouse to play games, music, and pick out shapes and colours. The end goal is to be able to use her eyes to communicate further and allow the device to be her voice. 

Another thing we have been working on is allowing Stella to communicate choices.

Through therapy, her motor planning has greatly improved, so she is more able to reach towards things she is interested in. I always want her to be able to have opportunities to express herself and make her own decisions. I have been trying to make more of a habit of allowing her to pick between things such as toys or clothing.

It’s important to remember that people that can’t communicate in a traditional sense still have a prerogative about things. Anybody that knows Stella can tell you that she is a very opinionated little girl. Sometimes the issue is not as much of them not speaking as it is people not truly listening.

The other day someone asked me what my plans were for my daughter next year regarding school. What am I going to do? At the moment we are attending a school program one day a week, which essentially is an extension of Early Intervention therapies. We are slowly introducing her to a more structured environment outside the house, but her 4th birthday is approaching, so soon we will be transitioning into Prek. 

Sometimes I feel like I am waiting for an adult to hold my hand and guide me through these things, but then I remember I am the adult. I am fantastic when it comes to remembering medicine schedules and juggling therapy, but when it comes to typical parenting milestones I am absolutely clueless. My daughter is an only child, so I do not have anything to compare my experience to. 

It has been a struggle balancing my work life and all of my daughter’s needs.

It has been a struggle balancing my work life and all of my daughter’s needs. I am a hair stylist and am only able to get child care for a couple days a week to maintain my client base. I never intended to be a stay at home mom. I love my career, and want to do everything necessary to continue it. The thought recently occurred to me that school would also equate to more opportunities to work. 

As enticing as working more is, there is always a level of anxiety of leaving her with people I am not familiar with. Also, the daunting process of doing everything needed to get her established in the school system. I feel completely out of my element. I know I need to get the transition started though, because kindergarten is right around the corner. 

One thing disability parents excel at is adapting to new and sometimes less than pleasant situations.

One thing disability parents excel at is adapting to new and sometimes less than pleasant situations. One thing we are not the best at is relinquishing control. Although I love seeing my daughter have more opportunities to grow and learn, it is hard not being by her side in the process. But in the long run I believe it will be what is best for us both. 

I’m not going to lie, as a parent to a child with disabilities, it is sometimes easier to just stay home. A lot of logistics go into travelling with a medically complex person. Keeping feeding and medicine schedules, packing all the equipment, and just the physical strain that comes with it. Who has ever driven 3 hours on vacation to discover you left your child’s feeding pump at home? This family!

For the past 18 months we have not ventured out a lot, with the exception of therapy and doctor’s appointments. Our daughter is incredibly vulnerable to the threat of Covid, so we have taken social distancing very serious,  but we were all becoming a little stir crazy. I desperately needed a change of scenery. 

We made the decision to go on a little vacation with safety in mind. We found a lodge that was off the beaten path, but had everything we needed to have a good time. As long as there is a pool, our daughter is pretty happy!

There is a lot of preparation that comes with even a weekend trip.

Also, a lot of anxiety. What if I forget something? How will I keep her medicine the right temperature? Will she be comfortable on the drive? I try to keep myself organized with a checklist, but I still always manage to forget something. 

The drive went pretty smoothly, with the help of Cocomelon, but her patience was definitely wearing thin by the end of it. With Cerebral Palsy, muscle discomfort is very common especially when constrained to a car seat. A good stretch was long overdue. 

The location we chose was more on the secluded end of things, which for our needs was perfect. It was so nice to have a little getaway while maintaining the social distancing practices we had become accustomed to in an attempt to keep our daughter as safe as possible. We essentially had the place to ourselves. It was one layer of anxiety we desperately needed lifted.

The trip did not come without challenges.

The trip did not come without challenges. The lodge was not exactly wheelchair friendly. We also attempted a cave tour, but it turns out our toddler is not quite the spelunker we had hoped she would be. That particular activity did not work out, but one thing I have learned is not everything is going to. I used to feel really defeated by things like this, but I’m trying to learn to go with the flow more. We tried something new, and then moved on to a more successful activity.

I don’t expect her to engage with every experience, but I have to give her the opportunity to try. Sometimes you have to put in a little extra effort. Everything will not always work out as anticipated, but that’s okay. You never know unless you try. 

With all of the ups and downs of my daughter’s health, I have found myself having extreme separation anxiety.

There has never been a time when her father or I have not been with her for more than a few hours.

There are a couple of immediate family members that know how to care for our daughter’s needs, but it took me a long time to even feel comfortable being away from her in the care of those closest to us.

In my heart I always knew they were fully capable.

My mother is a nurse. She even had previous experience handling feeding tubes and people with disabilities.

My mother in law is highly attentive and is naturally an amazing caretaker.

Even with all of the reassurance in the world, I felt incredibly anxious being away for any extended period of time. 

Stella will be starting preschool in the near future, so I’m trying to come to terms with the idea of her being under the care of others.

I have recently been given somewhat of a practice run with therapy.

Due to the pandemic, parents are not allowed to attend therapy sessions at our local clinic so we have become accustomed to waiting in the parking lot.

Even though it is just a short period of time it still feels strange. 

The irony of it all is that my daughter is rather independent.

She has never been a particularly clingy child.

If she could speak she would probably say “how about a little space ma”.

It probably does not help that she is an only child.

It is really easy to get hyper focused on her when there is not much distraction.

I feel like a lot of it stems from the PTSD from coming so close to losing her.

She also was diagnosed with epilepsy a little after she turned two, so any amount of stability I felt with her health went out the window.

Her seizures are not frequent, but when they happen it is always completely out of nowhere.

It keeps you constantly on guard.

It is just hard to expect anyone to be as prepared. At least In my own mind. 

Soon it will be a sink or swim situation.

We are postponing attending school for a few months with the threat of the pandemic, but the time will soon come.

Like all things that come our way I know we will adapt. 

I have really struggled with letting go of the image of the typical childhood I would provide for my daughter. 

As another year passes, we set aside space in her bedroom for more things appropriate for her needs.

Her pastel mermaid themed bedroom is filled with a mixture of stuffed animals and heavy medical equipment.

When you open her closet it has frilly dresses and syringes.

It all feels like a huge juxtaposition, and nowhere near what I anticipated my child’s room to be. 

We opted for a toddler floor bed, but I can feel the time coming near for needing a medical bed more suited to our situation.

It is getting harder and harder to place her down for bed as she grows.

Also, she needs a lot of the safety elements a medical bed can provide, as opposed to a typical bed.

We have procrastinated moving in this direction because honestly, having a typical toddler bed for the time being felt like a tiny slice of normalcy; if only for a fleeting moment. 

We are also in the process of getting her a wheelchair. Bittersweet is the only word I can say to describe the emotions I feel with this.

I am not the type to bury my head in the sand, so from the time she was a small baby I knew this would inevitably be a part of our lives.

It is still a tough pill to swallow. Something feels very finite about it.

Of course we always want to move forward, and we know a wheelchair is another stepping stone towards independence.

It is still a hard fact to come to terms with all the same. Something about it just makes the reality feel more concrete.

With all this being said I don’t want this to come across as if I am disappointed in my daughter in any way.

She is perfection in my eyes, which is why this all hurts so much more.

As a parent we want the very best for our children. We want them to have better and to live without struggle.

I would give anything to be able to fix this all for her. 

I have to learn to be able to differentiate between the image of a “happy childhood” and the tools I will need in order for my child to live a more fulfilled life.

It’s hard not to be affected by the stark contrast of our family and those around us, but it is a reality I must make peace with.

The cards are stacked against us, and I have to give her all the tools she needs to thrive. 

Being a medical parent is an exhausting experience to say the least. The easiest way I know how to explain it to people outside of our community is that it is like raising a newborn indefinitely. A lot of sleepless nights, anxiety, and round the clock care.

The mental exhaustion can be a lot sometimes.

I am often told “special parents get special children” but I’d be lying if I did not say that it feels like they were just saying “you got this” when in reality a lot of us really don’t “got this”. Reassurance can be great, but sometimes it can be difficult to receive when you are struggling to keep your head above water.

As of late sleep (or lack the there of) has been a real wrench thrown into our daily lives. It’s something I have seen to be a common issue amongst other kids in our community, but until recently we have been fortunate not to be burdened by it. Suddenly our daughter’s sleep patterns have become completely erratic, and the entire family feels burned out. We now seem to drag through our days in a complete fog.

Sleep deprivation can be particularly unwelcomed when you are already balancing a loaded therapy schedule; not to mention all of the other needs a medically complex child requires. It’s hard to motivate yourself through the day on an empty tank. Also, the summer of 2020 has left us without a lot of our support team that has helped carry us through times like this.

It can be incredibly difficult, because I am my daughter’s every move.

If she is playing it is because I have carefully positioned and repositioned her to be able to interact with her toys. She is fed through a surgically implanted tube in her stomach (gtube) so every ounce of nutrition she receives is through frequent and time-consuming feedings. A parent of a medically complex child cannot check out because they are tired. It is a not a luxury we are afforded.

As with a lot of things, the hard times come with an ebb and flow. There are certainly more good times than bad. I write this in the midst of sleepless nights, but we have been here before. I know we will see the other side of this (hopefully sooner than later) and return to our normal routine. Until then may the coffee gods ever be in our favor.

As I entered this foreign world of parenting a child with disabilities, I felt like I was alone on an island.

Observing others experiencing parenthood differently was extremely isolating. That’s why I am so thankful for the community that I have found in the online world.

The social media world can be a very toxic place, but at a time when I felt completely alone it was exactly the lifeline I needed. I had a hard time envisioning myself as a medical mom. Every depiction was either extremely depressing or the opposite end of the spectrum of being unrealistically positive and “inspirational”. I could not really see myself or my experiences in any of it.

Early on I was introduced to the world of online groups that were more specific to our situation. It was eye opening to see so many families from all walks of life feeling similar emotions as mine and experiencing the same traumas I have experienced myself.

Being able to express raw emotions without feeling apologetic. Being able to be angry with the hand I was dealt without feeling shamed. Hell, it’s even nice to be able to use medical terminology without explanation.

It has been so beneficial seeing other family’s routines and lifestyles, and I could finally envision myself as a parent. In my interactions with typical families, I found that they attempted to console me by telling me “everything is going to be alright” and “don’t always listen to doctors”.

I would hear that she was going to defy all odds, and wind up able bodied like her peers. It never sat well with me. I’ve always been a realist to my detriment.

In interacting with families similar to my own, I got a new perspective.

That my life may not end up as I had previously imagined it. That I very well may end up parenting a severely disabled child. But most importantly that despite all of that, it was going to be okay.

It makes me optimistic seeing families like mine still travel and have meaningful relationships. That is what I truly find inspirational. Not denying that life can be more difficult in many ways, but seeing despite everything, it hasn’t stopped them from living life to the fullest.

Not glossing over their hardships but being able to witness others navigating through this unique life has been so beneficial to me. And seeing how beautiful this life can truly be.

As August comes to an end we are starting to embark upon a new part of our journey through this strange year.

We have spent much of the last few months in isolation. Avoiding stores, restaurants, and even friends and family in an attempt to do anything we can to offer another layer of protection to our medically fragile child. We are now reaching the point where decisions must be made. Remaining to the greater extent in quarantine or resuming our face to face therapies and services.

Every time I feel like I come to terms with my fears amidst this pandemic another layer of anxiety seems to present itself. There does not seem to be an end in sight. In the early days of this, I assumed this would be a fleeting thing. That we would be vigilant until it passed, and then resume our lives as we knew it. I was terribly wrong. Now months into it things only seem to have gotten worse in my location. Meanwhile, time also passes without the therapies that have become such a vital part of our daughter’s life.

It is difficult to imagine venturing back into the world knowing how many people are blatantly not taking precautions to protect children like mine.

I have seen so many people complain about the simplest amount of measures to slow the spread of this deadly virus, even to the extent of boycotting businesses that are prioritizing safety. I know they look at children like mine as a statistic, but unfortunately, I do not have the luxury of minimizing this as it is a real threat to families like mine. When I express my fears for my daughter’s safety though, I am often met with hostility and condescension. This experience has really opened my eyes to not only the lack of empathy and compassion from strangers, but also from people from within my inner circle. It has been disheartening to say the least.

I feel at odds with myself between wanting to keep her in the secure bubble of our home, while at the same time I have an immense amount of trepidation about the long term damage not seeing her regular therapy team can be having on her body. The fear of regression is ever present in my mind. We have been very fortunate to have Zoom therapies to help bridge the gap, but nothing compares to having a trained professional working hands-on with her.

Ultimately, we have decided to resume most in person therapies, with a high level of precaution taken.

It was not a decision that was easy to make, but I feel as though it is in her best interest. That being said, it’s hard to quell the anxieties this year has brought me, but I am reassured by the level of care and thoughtfulness our team has always provided us. I can’t pretend this is not unnerving for us, but I remain optimistic that this will be a small step into the new normal that is our life.

Epilepsy is something that I have always been fearful of for my daughter. With her brain injury it was always a possibility, but by the age of two I had begun to think that maybe we were out of the woods when it came to epilepsy. That was until January 2nd of this year.

When my daughter was born, she suffered a brain injury known as HIE, an injury resulting from oxygen deprivation to the brain, and was immediately put on a cooling blanket. It puts your body into a hypothermic state for 72 hours to allow it time to rest after experiencing trauma.  As they move the body back to a normal temperature, it can sometimes trigger seizures. My daughter experienced pretty significant seizures coming off of the cooling blanket. She was put on high doses of seizure medication, but eventually was weaned off before leaving the NICU.

Seizures seemed like a thing of the past.

As time passed, the fear of seizures was always something that was in the back of my mind. I know epilepsy is not necessarily something that went hand in hand with HIE, but as I met more families similar to ours, I could not help but notice how many were affected by epilepsy. Still, it was something I would rather keep in the back of my mind.

January 2nd started pretty much like any other day. She and I woke up pretty grouchy, but that isn’t unusual for us. I laid her down on her favorite play mat and turned on cartoons to keep her occupied while I got her breakfast and medicine ready.

When I came back into the room she was giggling at something that amused her on the tv. I can’t remember exactly what it was, but I’m sure a cartoon shark was involved. Her dad had just left for work. I then filled her syringes with her breakfast (she is 100% gtube fed), and when I looked down, I noticed her head was fixed to the side.

I immediately knew something was off.

She then began to have rapid mouth movements, as if she was speaking very quickly, but she is nonverbal. Her eyes remained fixed, and then her limbs began to tremble. I immediately called my husband to come back home, because I knew she was experiencing something I had spent two years mentally preparing for. I was not prepared.

I called for an ambulance and was given instructions from an incredibly kind and calm woman over phone. At the time, all I could think was, “how could you be calm at a time like this”. Perspective is not a strength of mine at times of crisis. It was so difficult seeing her lose the small amount of control of her body that she had. I then was flooded with so many thoughts and emotions. “I’ve got to keep the paramedics from letting my cats out” , “how could you be thinking of your cats when your child is seizing on the floor” , “should I get shoes on or a jacket” , “how could you be worried about yourself at a time like this”.

My mind was all over the place, and I just felt like I was failing her.

Thank god the paramedics arrived quickly and were very reassuring. It was so bizarre seeing such a tiny person being loaded onto this gigantic gurney. I got into the back with her, not before running back for tablet and favorite stuffed moose. I knew she’d be incredibly disappointed in me if I forgot. They then gave her a shot of anti-seizure medicine, and 15 minutes into the ride to the hospital the seizures began to subside.

We were then admitted into the hospital, and she went into what is known as postictal state. It’s like she was there, but she wasn’t. She remained extremely fatigued, and her eyes were fixed. I did not know if I was ever going to get her back.

She slowly hour by hour began to return to her baseline. She even gave us a small grin. Her level of resilience is unfathomable. It has been five months, and we are still working to regain the strength we had lost from this experience, but she continues to push forward. She never ceases to amaze me.