Something to Fight For
*From June 1st 2023*
This month, in less than one week, Daniella will be two years old. That feels unreal to me for so many reasons. But tonight what is sitting heavily on me is the disbelief I can see in people’s faces and hear in their voices when I tell them this. (Maybe I’m imagining it but I don’t think I am.)
She does not look like she is going to be two. She is not walking on her own or talking as much as a typical child her age. And at the same time, on some level, I feel I am not really allowed to be sad or surprised or feel any kind of way about that. This is not unheard of at all. In fact it is very much within the realm of possibility, even to the point I could say it is expected.
Obviously I’m allowed to feel any kind of way I want. But it is still not the same as if a typical child were not walking or talking at two and their parent would process that delay.
And I don’t want to feel sad or disappointed about it. I want to count down to her birthday and celebrate all of the wonderful things about her. She has grown so much in the past year and learned so much and brought an unquantifiable amount of joy to our family. I can’t sit here and think about all of the things she is not doing. But tonight I am. It is where my mind naturally goes. I wish it didn’t.
I suppose all in all I have had tougher times processing all of this in the past two and a half years. This is not my worst day. There are so many phases and cycles and waves of this thing. I’m sure there is no right or wrong and that everyone’s journey is probably different. I still feel and know that a better path would be to let it all in (or out) and feel it and ride the wave or let it wash over rather than trying to stuff it down or deny it or fight it. I am not opposed to that or incapable of that. The wild thing about all of it is that you don’t know when a wave will hit. And that is what knocks me off my feet, the unexpectedness. The gut check.
Like last week when we were at a park picnic. I felt like I was seizing an opportunity that I don’t usually have on that particular day of the week. Therapy session number one (speech) had canceled on its own so then I was able to push back session number two (OT) by about an hour and squeeze in a nice long play date at the park with tons of other moms, some new aquaintances, some old friends. And I was really proud of this because I feel like sometimes she just needs to be a typical baby and I just need to be a regular mom taking her to the park and living our best life. Well for some reason I just felt like she was so separate, so different, so delayed compared to the other kids there that were close to her age. There is absolutely no reason I can pinpoint that this should have stood out to me, other than the circumstances existing as they do. And I certainly do not feel this way all the time. But it hit a nerve that day. And it was incredibly frustrating because something that I put effort into scheduling for a specific purpose and effect, ended up having the exact opposite.
I don’t really think there is anything to do about it except notice it and try to be good to myself and eventually move on. I don’t even know if that’s the right answer. Maybe there’s a lesson. But there doesn’t always have to be a lesson. I think sometimes it is just life. Of course I feel grateful for so many reasons. And I know if I focus on those I would instantly feel lighter. And attract more, and see other silver linings, and on and on and on. But on the other hand, I think this is part of what comes with the territory.
It’s interesting because when I found out about her diagnosis, the parts I was sad about and worried about have turned out to be almost no concern at all. The parts that are hard about this are completely different and unexpected. But difficult just the same.
On the other hand, I would be remiss if I did not reflect on some of the positives. We have an amazing team of service providers in our lives and one of them deeply complimented me recently. In an effort to navigate all of our upcoming transitions and possible obstacles, she reminded me to stand my ground and remember who I am and what I am made of.
I do know what I am doing. I am smart. I am capable. I am a fighter. I am resourceful. I am an advocate. I will figure this out and hold everyone accountable and persevere until we get what we need and deserve. I cannot deny that I am exhausted and I wish it were easier. I took for granted how everything had essentially fallen into place with my other two typical children and I envy anyone who has the luxury to do that at this moment. But it feels good to have something to fight for. And to know I have people in my corner who will not only help me, but will remind me that I am equal to the task.
