Therapy is something that has become an integral part of our lives since our daughter’s birth.

We see a physical, speech, and occupational therapist weekly. So it has been so unbelievably odd not having easy access to our therapy team throughout this time of social distancing.

Self-motivating is something I absolutely struggle with.

Keeping up with our normal routine has been a challenge when we are not on the strict schedule we have become so accustomed to. It is easy to get in the habit of just existing for a moment, but the fear of regression is ever present.

I cannot speak for every special needs parent, but getting our daughter to participate in therapy is always an uphill battle. I feel like she is capable of so much, but is so incredibly stubborn. To be fair she gets it honest. It’s so easy to push it to the back burner when it can be so frustrating. Having scheduled therapy sessions are not only informative, but for us it’s incredibly important in keeping us accountable.

I’ve done everything I can to maintain her routine, but it’s hard when our previous routine is no longer existent. Prior to this, she kept a pretty full schedule. I felt like a toddler secretary; constantly trying to juggle between physicians, therapist, and equipment providers. A good portion of my week was spent scheduling appointments. Now that our calendar is completely empty,  it’s hard to maintain discipline in the therapy department.

Emotions are running high right now so it’s easy to struggle with guilt throughout this. I feel like overall I have kept up with things, but on those days when I just don’t feel up to it I am left with an incredible amount of guilt. It’s not realistic, but in the mind of someone who struggles with anxiety, it feels like anything you do (or don’t do) could have a drastic effect on your child’s future or well-being. I understand how misguided that is, but sometimes it’s hard not to feel that way.

I cannot wait to get back to some semblance of what we had just a few months ago.

In the meantime we are taking advantage of all the teletherapies that are available to us to maintain all of the progress we have made. I’m trying to keep things in perspective. Hopefully things will return back to our “normal” soon, and we can resume our doctor and therapy visits. I’m trying to allow myself this opportunity to relax, and take this moment to breath.

One part of having a medically fragile child I struggle with is the constant anxiety of her catching an illness, and the havoc it will have on her body. Having a brain injury can make it very difficult for the body to interpret illness or how to properly respond to it. That’s why the idea of a pandemic could be particularly stressful for a special needs parent.

When it comes to your average cold and flu season, I find myself in a constant state of running the odds-on risk/reward for pretty much everything. I may take a trip to the zoo which has large groups of people but is an open-air environment. The threat level feels lower. I may however, avoid other children’s birthday parties which can sometimes present itself as a germ factory when small children are involved.

With the growing numbers of COVID-19 cases it feels like the world is closing in on us.

I do everything I can to mitigate risk, but it’s not unusual for us to need hospital attention for extended periods of times throughout the year. I’ve always felt so confident about the care in our local hospitals, but in the current health crisis it no longer feels like the safe place it had once been.

I have been criticized in the past for the level of paranoia common illnesses bring me. I struggle to internalize fears, so I always seem to wear my heart on my sleeve about things. She contracted a common stomach bug, and it landed us in the hospital for two months. It resulted in two procedures that required general anaesthesia and a central line. We were told her organs may never fully recover from it. A typical child would probably recover without medical intervention within 48 hours.

She also has weak throat muscles that can make keeping her lungs clear an issue. Her aspirating is a constant concern of ours, and even on good days she struggles to handle secretions. It makes the idea of a virus that can have such impact on otherwise healthy people terrifying.

I find myself getting frustrated with others that have less concern about this. I hear statistics on the probable 97% survival rate. This means very little to a family that has been in the “3%” on multiple occasions. Only 1 in 200,000 mothers will experience a placental abruption yearly, only 1.5 in 1,000 live births will experience HIE, only 16% of babies with moderate/severe HIE will develop epilepsy, and I think you catch my drift. I’m just not one that is comforted by statistics.

I have tried to refocus my energy on things I can control in this situation.

Practicing social distancing, and also allowing my family to take this time to refocus on each other. I’ve also begun FaceTime therapy sessions to remain productive throughout this.  This whole situation has been an emotional roller coaster for typical and special needs families alike.

I hope we will soon see the light at the end of this. I hope people outside the special needs community get a broader perspective on how isolating it is to live in fear of an invisible threat. I’m working hard to recognize the silver linings in things. I hope we will walk away from this more connected than ever.

Everybody looks forward to that moment they get to see their child’s eyes light up on Christmas morning, or getting up early to see what the Easter Bunny put in their basket. But what happens when you don’t get that feedback?

 

Gift giving has always been my love language, so having a child completely indifferent to the experience is something I definitely struggle with.

 

I’ve always prided myself in finding just the right gift, but with my own daughter I feel myself coming up empty in the idea department. 

 

It has always been difficult finding things that piques her interest, and even when it does it is generally short lived. It’s not to say she does not enjoy material things. She loves cuddling her squeaky stuffed moose, and like many toddlers she can’t get enough of her tablet. But, beyond that she could pretty much take it or leave it. I will say it does make stumbling on something she does like that much sweeter.

 

As time passes, I’m starting to figure out methods of blending my over the top love of gift giving during the holidays, and providing things that are fun and functional for her. A lot of the pomp and circumstance were more so me being self-indulgent than anything she ever desired.

I’ve learned to create sensory experiences for her, but still in the themes of the holidays for me.

 

She loves textures, music, and lights. There is so much to work with during the holidays that are a feast to the senses that I was overlooking. I was so worried about the present I forgot that she’d be much more excited about the paper it came in.

 

There is a beauty in having a child that does not need the materialistic things to feel satisfied. She would take tinsel and slime over a pricy toy any day of the week. I was so busy trying to mould her into a child that craved the typical experience, that I was missing out on a child who was completely appreciative of the beauty of the little things in life.

It can sometimes be very difficult to live in the moment as a special needs parent.

I frequently try to envision a future for my daughter in a social setting, and where she will fit in amongst her peers.

That is why I consider myself incredibly thankful to be surrounded by friends and family that have embraced her for exactly who she is.

Sometimes I feel as a special needs parent we can push away families of neuro typical children because we assume they could never understand our struggles, rather than giving them the opportunity to learn.

I see from feedback from many parents in the community that this is not always the case, so I definitely do not take these invaluable friendships for granted.

It helps that a large number of the people around me are in the medical and special needs community. It is good to be surrounded by people who get it.

I also am incredibly thankful to my friends that have raised kind and inclusive children.

I try to explain things thoroughly to them (especially the younger ones), and answer all questions (even the uncomfortable ones).

As you might already know, most small children have no qualms with asking every question under the sun.

The moment you shame a child for their curiosity, you create another barrier that will limit the level of comfortableness they have around your child.

It’s not easy answering the tough questions, but I promise it is worth it.

I think it also helps to answer questions before they are asked.

It can be very jarring to see things like a surgically implanted feeding tube for a small child.

It can hurt to see other children starring at yours, but sometimes you have to do a little leg work to invite inclusion.

Sometimes it helps to simply introduce yourself, and explain your child’s situation. The whole thing can be intimidating to other kids.

One thing I have found to be helpful in starting these conversations is by introducing children to a teddy bear with the medical equipment first.

It helps soften the blow. I introduced my friend’s daughter to the teddy bear, and she was so excited to have the opportunity to help feed our daughter.

Ever since she has really taken it upon herself to keep our daughter included in any situation.

If you give children the opportunity to interact and be involved, a lot of the time they really step up to the plate.

Most children are curious and helpful by nature, until we give them hangups or make them feel rude for asking.

Also, I have found a lot of support within the special needs community.

There is a lot to be said for the power of social media when used correctly.

I live in a rural area, so having people I can relate with at my fingertips is an amazing feeling.

I can not imagine how isolating it would feel without it.

I’ve had people go far above and beyond for me that I’ve never even met, and it has allowed me to meet people in similar situations that I would have never met otherwise.

I feel these interactions are so vital in maintaining healthy mental stability for special needs families.

In many circumstances, we are unable to work due to the constraints of therapy scheduling and lack of adequate child care, and we lose that social interaction we so crave.

One very important thing I have learned is it’s not going to be handed to you either.

Sometimes you have to go outside of your comfort zone, and put yourself out there for friendships.

I remember vividly getting the official diagnosis of my daughter’s cerebral palsy.

It was something I had greatly prepared myself for. From the moment she entered this world we were told of the possibilities of cerebral palsy due to the extent of her injuries at birth.

I would stay up late reading through other parent’s experiences with their own children’s Cerebral Palsy.

I would read a story that was too difficult for me to envision in my own daughter, so I’d keep reading until I found an account that was easier for me to cope with.

I’ve seen Breaking Bad. The actor that plays Walt Jr. has CP, and he’s a talented actor. He gets around great. That will be my daughter. Right?

We received a relatively early diagnosis compared to most children I’ve seen. She was two months old. Most children do not get an official diagnosis until they turn two years old.

At the time I did not understand it, but in hindsight I realize that should have been a sign of the severity of our situation.

When the doctor broke the news to us we took it with very little emotion.

The countless hours spent analysing other families accounts with CP had numbed me to the reality of our situation.

We had minimized it in our head. The doctor boasted about how well we handled hearing the news, but in reality we were still in denial.

Even coming home we were still struggling to come to grasp with things.

Okay, she does not roll over, and has trouble holding her head up, but she’s a baby.

A lot of babies take a little longer to hit those milestones. Milestones is a word I have grown to loathe.

I had a small box where I had visualized my idea of what CP was. I thought about mobility issues, maybe a wheelchair, we could handle that.

I’m not minimizing those issues. This was just my head space for coping with things. I did not think about how CP affects organ function, abilities to eat orally, or communicate.

I would later find out that my daughter’s specific type of Cerebral Palsy is Spastic Quad Cerebral Palsy.

Meaning it effects most of her body. One thing I took for granted when I began this journey was the absolute uniqueness from one child to the next.

I try to show myself grace for my ignorance in the beginning. I was definitely using unhealthy coping mechanisms, but in the beginning you are just in survival mode.

I could read anecdote after anecdote, but at the end of the day everyone’s experience is different.

As time passes she is starting to become such an amazing little person.

I’m trying to focus less on the diagnosis and comparisons, and focus more on her as a unique individual.

Of course Cerebral Palsy is a major part of our lives. We are riddled with doctors, therapist, and medical equipment.

But, I’m starting to see it more as part of the building blocks that make her who she is, among countless other aspects of her life.

It will not define her, but I do attribute it to the amazingly strong and brave person she is.

When my daughter was born, her doctors gave us the expectation that she’d have very little purposeful movement or abilities.

Since that time, she has defied all odds and has slowly improved her cognitive abilities and fine motor skills.

She never ceases to amaze me, but sometimes it still doesn’t feel like it’s enough for the world around us.

Milestones do not come easy for a child that struggles with delays, so when you finally manage to hit one, you want to shout it from the rooftops.

However, often times you are met with the dreaded “what’s next”.

Usually not so directly, but you always know what is being implied.

When she took her first steps in her gait trainer, I was almost immediately asked when she would start walking independently. My heart sunk.

We will always work toward that goal, but I know there is a strong possibility it may never happen. All I wanted was to savor that moment we had worked so hard to achieve before looking forward into the unknown of the future again.

She is also almost completely tube fed. The concept of a toddler not enjoying candy or sweets is a hard one for people to reconcile in their minds.

In all honesty, even if she could eat orally, she would have zero interest in foods.

She has been cleared by her doctors to try eating thicker purees, but due to her extreme oral aversion she has no desire to even try.

We’ve tried every therapy, and even bribes of chocolate to no avail. I’m frequently asked if we are any closer to oral eating. My answer is always “any time between now and never”.

In the beginning, I did a lot of mental gymnastics to remain optimistic.

I envisioned doing the work needed to rehabilitate her and having the story book outcome of a physically abled child, but that is not reality.

As time passes, I’m getting a better perspective of our future. It takes time to come to terms with unmet expectations and to grieve the loss of the life you anticipated, but I feel like we have grown together.

I’m definitely not the same person I was prior to having her in my life.

In a perfect world she would grow up completely independent, but the reality is that she will depend heavily on the village around her.

With every accomplishment she achieves, I want her to grow confident in herself; even if it is not the same achievements as her peers.

I don’t want the world to make her feel as if she is not enough, and her best will always be more than enough for me.

As we approached Feeding Tube Awareness Week, I have found myself reflecting upon a time when I was completely oblivious to the concept of tube feeding.

Prior to two years ago I could not have told you what a g-tube or ng tube was. It has become such an enormous part of our lives that sometimes I forget that I myself was completely unaware of it until recently.

My daughter is our one and only, so I have no other parenting experience to compare to.

The idea of a child telling me they are hungry, and me fixing a meal is a foreign concept to me. All she and I know is a strict schedule of mealtimes that are carefully planned for her caloric needs.

I frequently let her try different taste and textures, but she shows little interest in it. She finds eating in the typical sense far more stressful than her g-tube feeds.

I find myself having anxiety feeding in public.

I know the stares and sad looks we will be on the receiving end of, so I tend to schedule feedings at times when I can have privacy.

It’s a part of myself I am not proud of. I want to be the person that advocates at all times, and that was not so concerned about others opinions. It’s just one of those easier said than done things.

When I am truly honest with myself, I often wonder if I might not have given curious stares watching another mother tube feed prior to all this. I’m trying to become better at seeing through others perspective.

Sometimes being a special needs parent can jade you to the reality that it is truly human nature to be curious.

When you feel like it’s you and your child against the world, you automatically become defensive to the people around you.

Moving forward in this journey I hope to improve upon my patience with others.

That their looks are not meant to be malicious, but just curiosity.

I want to educate rather than judge. I want people to know she is happy and healthy despite being unable to eat orally.

I want people to understand that we do not look at the tubes with disdain. We look at them as a tool that facilitates her to be with us today, and we are eternally grateful for that.

Because at the end of the day, fed is best.

As we embark upon my daughter’s second birthday I am filled with the familiar and bittersweet emotions of her first.

I was hopeful that the feelings would have somewhat faded with time, but I’m starting to believe that her birthday will always signify more than just a milestone of another year passing, but also serve as a memory of the most life altering day of our lives.

My daughter was born deprived of oxygen and a heartbeat for 17 minutes due to a placental abruption.

It left us with a lot of uncertainties and, ultimately, a diagnosis of hypoxic ischemic encephalopathy (HIE) and quad cerebral palsy.

The months that followed her birth were nothing short of surreal and absolutely traumatizing to our family. I have never experienced such an extended period of stress and exhaustion in my life.

I feel like I have come so far emotionally, but I would be lying if I did not say a lot of my approach is a “fake it till you make it” method of dealing with things.

I’m not sure how healthy that is, necessarily, but it has always been my way of coping with hardships.

It’s kind of my emotional survival mode. Rather than shying away from typical families, I go out of my way to expose myself to them.

Being vulnerable to these feelings is my way of desensitizing myself. This is not to say I do not envy them.

I would love nothing more than to see my daughter not have to struggle through life with so many things people take for granted.

I’ve just tried very hard to not become a bitter person, and to understand that we are living different realities.

Neither right nor wrong; just different. We have traded play dates for therapy sessions and toys for medical equipment.

But, comparing my life to theirs is of no benefit to us. That does not always stop me from doing it, though.

Another realization I have learned through this journey thus far is how powerful words can truly be.

As a person who lived a fairly privileged life, I previously looked at the hyper sensitive and “politically correct” nature of people’s reactions toward word usage from a cynical view point.

Now, after having gone through this experience, I have learned a hard lesson on just how soul crushing a harsh word can be.

I still have to catch myself, at times. Using people first language and erasing words like “normal” in casual conversation are still new concepts for me, but I’m learning.

This is all new to me too, but I still understand the importance. Being on the receiving end of painful words has given me a greater understanding of the impact the language we use can have.

At the end of the day, being considerate of other people’s feelings is really not that hard.

Another thing I have learned recently through this experience is that intense amounts of positivity affects me emotionally almost as strongly as negativity.

It’s not a quality about myself I particularly like, but it is my truth.

Inspirational videos of kids defying all odds does not bring me comfort. Realistic expectations bring me comfort.

This comes off as negativity sometimes, but I promise it is only me finding peace in my situation for what it is.

I have learned that hope and expectations must remain fluid, changing often as we get a clearer picture of her future.

Keeping grounded is sometimes the only sanity I have. Strangers offer me words of encouragement, and anecdotal accounts of miraculous “cures”.

I can’t relate with blind optimism though. It does not resonate with me. I end up getting frustrated and dismissive, but I’m trying to learn patience.

This is a foreign territory for them, and I realize that sometimes it’s all they can offer. Honestly, prior to this I’m not entirely sure whether I handled similar situations in the exact same way.

With all this being said, I must state that none of this is coming from a place of discontentment of being a parent.

In fact, I often wonder if every parent shares the depth of connection I share with my daughter.

When you go beyond typical parenting and become their every move, you feel like they are a part of you.

These are just some of the many emotions I feel; which mostly consist of joyous ones.

It’s just sometimes I feel like the narrative in our community is so strongly rooted in the motto of “kids with disabilities create superhero parents,” though a lot of times we feel so far from it.

We often feel exhausted, unheard, and alone. I feel as though this thought process leaves a lot of people feeling more alienated than ever.

This is an unrealistic portrayal of the battles we face, and I feel as though it minimizes our experience.

As time passes, I have learned to acknowledge all of my feelings, even the less appealing ones.

I know we will have so many amazing experiences in our toddler years to come, just like the years prior.

There will also be many challenges and hardships along the way. But, that’s okay too.