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.