*edited 9/22 to clarify and add more context and realizations to this post* (bold and italicized are the edits)
The boys have been going through many wonderful changes since the end of their school year. They’ve been able to accomplish so many new behaviors and skills that have been absolutely amazing to witness. For example, there are moments when Julian is able to walk, and I don't have to run away or worry about the stress being too much. In those moments, a wave of relief washes over me, mixed with a sense of grief. It's a strange feeling, experiencing both emotions at once. It's one of those things where you realize that everyone else gets to experience this, and it hurts because it feels like I've waited so much longer for what others seem to just “have”. The duality of raising special needs children is something I will forever have to acclimate to, however I am always grateful for it (the duality) as well. As a parent of a special needs child, valid emotions are often minimized. People tend to say things like "every child does that" or "it's going to be okay," which can be disheartening. I am an over-thinker and I feel things deeply, so when someone minimizes my experience (or even my children’s experiences), it's incredibly frustrating. I feel frustrated because I know what we can and cannot do with absolute certainty, and then I'm told that every child “does that.” This cannot be true because I witness many things other children can do that my children (at this time) cannot. (And I don’t want to just make them do things that will be too much for them because they don’t deserve unnecessary stress just to “do stereotypical things). I am the voice and advocate for my children until they can communicate more efficiently with others. I know from experience that they’ll feel themselves that even when they think they can “just do it” it'll be taxing, and I have a feeling they’ll feel a similar frustration that I feel as their mother now. I want them to know from my example that they don’t have to do everything in a way that is stereotypical or just because it’s a “should” of society. We as a family have decided to do our best to create unique and specific experiences for ourselves that way our boys live with just as much joy. I am thankful to be my son's mother and to share a similar wiring and diagnosis because it helps me understand what they are going through. However, it can sometimes feel like a cruel joke to experience such deep emotions. It is difficult to handle feelings of rejection, particularly when they stem from missing out on experiences I had hoped for as a parent. While comparing myself to others diminishes my joy, it is an inevitable aspect of human nature. Despite our efforts to avoid comparisons, it is a common practice that helps us, as a society, navigate life's experiences. However, as much as we are grateful and as much as we do our best to create memories that suit our lives I can envy how effortlessly other parents plan play dates, go to restaurants and even have changes in plans. Even though, I hate surprises or last minute plans myself…and creating new friendships can give me overwhelming anxiety. As much as we love playdates with the friends who understand our needs it can be the most challenging to navigate the change in routine. This is where the belittlement of my valid anxiety comes into play. I understand what my sons can handle, and it can be frustrating to feel judged for prioritizing their peace over pushing them out of their comfort zone. Being their parent is a constant balancing act because I am their safe space, but also the one who must guide them to where they need to go. I am mostly grateful for the complex emotions we experience, though it can be exhausting to feel everything so deeply. The concept of contentment is always on my mind, and I find it challenging to live by that rule. I even had it tattooed onto my right wrist to remind myself to be content with all we have in our life. It feels like my life’s work is to balance the conflicting emotions of happiness and desire for more when a milestone is reached, only to have the goalpost moved; it feels like a constant struggle. Ultimately, I remain hopeful that we will eventually achieve our goals and access experiences that currently feel out of reach. Despite the obstacles, we must persevere, practice patience, and demonstrate love. It is within our own world and routines that everything feels normal; it is when we attempt to integrate into society that the true differences in our lives become apparent. This is why having friends who truly understand is so crucial. We are fortunate to have a few of these friends, and I hold them close to my heart.
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Ava Elise
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