These conversations I've had have given me a lot to think about. One question I get frequently that I have struggled to answer is "What's it like?" What's it like dealing with a rare chromosome disorder? What's it like not knowing this or that? I've struggled to answer that. Why? Partly because I don't know but at the same time partly because the answer is so consuming that to try to put it into words could very easily cause me to curl up in a ball and cry in the corner. But this, I think, is the answer. These are the things you should know about what it's like for a parent of a child with a chromosome disorder, special needs, chronic illness, and/or developmental delays.
1. Looks can be deceiving.
Mostly Olivia looks "normal." Except for her prosthetic, her chromosome deletion is not at all obvious. Her geneticist, oncologist, and pedatrician and have all commented to me that they can almost always tell when a child has a chromosome abnormality. There are markers and facial features that doctors recognize. Not so with her. Her disabilities are not in-your-face obvious and it takes some getting to know her for certain things and problems to be obvious. Her speech delays, her low muscle tone, her inability to keep up with other kids, her delay in motor skills are not immediately apparent. Therefore, I feel as though I am often trying to explain her, her behavior, why she does certain things, why she can't do some things, why some things are taking longer. It's exhausting. Even with teachers who know her, who know her history have expressed frustration over certain situations when she can't or won't do something because she "looks fine, she acts fine." Inside I'm thinking, "Hey, it's an actual miracle this girl is even WALKING right now. Any attempt at tracing/letter recognition/or complete sentence is just an added bonus as far as I'm concerned."
Even as her parent, I sometimes forget what I am dealing with and have unrealistic expectations. And I get frustrated. I get frustrated like every other parent. And then I remember. And the guilt that comes with that is overwhelming. And this happens too often.
2. "Okay" does not always mean okay.
One thing many people have said to me and Brandon since Olivia's cancer went into remission is, "Oh, you must be so relieved! It's over!" Well, yeah we're relieved...for that part. But no. It's not over. It is far from over. Liv has a myriad of other issues. Things come in waves. And sometimes, like now, we are in a relatively quiet time for her health. We have a long stretch between major appointments, but even still...her issues will never be over. Never. And furthermore, we will never know exactly what to expect due to the rarity of her chromosome disorder. She will be a question mark her whole life. I've met a handful of other mother's (through Facebook or Instagram) with children with Olivia's same disorder. Not one of them has the same set of problems. They have a few similarities, but they are so different. There is nothing solid that any of us can compare our situations to. So every pain, every complaint, every muscle spasm sends a new wave of anxiety because I just don't know what's coming. I know something is coming, but I don't know what exactly. And I can't even get in to potential emotional traumas she will inevitably have to deal with. So we celebrate every lull in hospital visits, but I am constantly waiting for the other shoe to drop.
3. I get angry.
I have accepted the hand we've been dealt. I do my best to deal with it. But sometimes, late at night, when everyone is in bed and I'm alone with my thoughts, I get angry. And sad. And I cry. I allow myself those days. I still mourn the things that have happened to her, that will happen to her. I mourn the future I envisioned when she was born that I know will never happen. She still has a future, obviously. And there is a lot of sunshine in that future. But still. It's hard to explain, and it's hard to understand. I try not to make sense of it and just try to feel whatever it is I feel in that moment and move on from it.
4. I am hyper-sensitive to comparison and competition.
There are a lot of competitive women out there. Not just physically competitive, but competitive about their husbands, their homes, relationships, and kids. Ah, yes, kids. I think we have all compared our children to other's children at one point or another. We may not realize we are doing it but it happens, unfortunately. Long before we knew about Liv's chromosome disorder, I had her in therapy in our local Infant Toddler program for delays in her motor skills and speech. The comparisons then stung, but I thought then it was only a matter of her "catching up." Now, it's like hot razor blades right to my soul. Most people in my life don't do this or make me feel this way. Most. There have been a handful of individuals in my life the last couple years, people who I have explained my sensitivities to, but for whatever reason, they have felt the need to deliberately compare, brag, and then ask me why MY child isn't doing the same, or ask why I am not concerned she isn't doing something they think she should be. They are deliberately hurtful in the ways the only women can be. Sneaky, and back-handed. Although maybe they feel their honesty is helpful? I don't know. To them, I have slowly, but surely, shut down. I have no interest in maintaining contact with people who make me feel like every hurdle, every trial, and every milestone Olivia has met have not been the complete and total miracles they are. I have zero interest in exposing my child to people who lack compassion, to people that minimize how truly awesome she is.
5. There is more joy than I know what to do with.
Kids with special needs come wired differently. They just do. People are generally drawn to them. There is a fascination. They are unlike anyone you have every met. Olivia is no exception. That girl is pure sunshine and everything good in the world. Everyone should know this kind of happy. It's contagious. And addicting. And it is this kind of joy that makes all the rest of a crappy stuff okay. She teaches me a lot about happiness. Mostly, and most importantly, that its okay to be happy just for the sake of being happy.
Being the parent of a child with special needs is complicated. I'm glad people ask me hard questions, its good for me to think about these things. Sometimes these situations are hard for people to grasp and understand. I get that. I so, totally get that. But if you want to know what you can do for the parent of a sick child, special needs child, a child with autism, physical disability...Have compassion, teach your children to be kind to these kids and not be scared of them, and not just the kids who have more "obvious" differences. Ask the parent how they are and if they dissolve into tears, let them. Don't assume, don't compete, and don't compare. Being a parent is hard. ANY parent can appreciate that. Let us all listen more, judge less, and love more. It makes everything else so much easier for everyone.
Oh. And let's all be happy just for the sake of being happy.