The Grief is Real, and it's Okay.

There are days when the grief comes with a parade of clouds, tears, and the nevers being all that can stick out in my mind. Those days have become fewer and farther between since Evie was born. They still come though. There may be times when they come more often and that's okay.

Part of seeking community of the Lucky Few means that I will learn about the good and the bad. There are days I open my social media and the first post I see is from a grieving mother who lost her extra special sunshine due to the medical conditions connected to Trisomy21. My heart breaks for her and I feel the weight of the reality that not all of our precious children outlive their parents.

I see stories of families who have several extra locks and security systems and sometimes even GPS trackers on their kids because they just walk away in the middle of the night, which is terrifying and my heart prays for solutions that help these families.

I heard a story once about a little girl whose parents had exchanged phone numbers with every household in the neighborhood because their 5 year old loved to go visit people at random, without saying a word to mom and dad. All she wanted to do was be around her "friends", and though they all reportedly loved her and welcomed her, I can only imagine how terrifying that can be for parents.

I hear and read stories of kids who get bullied, loudly and cruelly judged by adults and kids alike. Videos of kids being left out, adults being taken advantage of, and other awful things too.

When I was pregnant with her I would often wonder about what it would be like to take her to dance classes, or horseback riding lessons, or sports games, or music performances. I wondered what kinds of boys she would be into as a teenager, and how many times Rob would loom over some pimple-faced boy picking her up for a date and tell him to respect our daughter and have her home by curfew.

Though I still imagine those things, there is another set of questions that often creep into my mind. Will she take dance classes? Will she have that coordination? Will there be a dance teacher that is kind to her and work with her in a helpful way? Will she be able to play sports? Is horseback riding out of the question? Our first call with a geneticist cautioned us against horseback riding, jumping on a trampoline, and gymnastics due to the issues kids often have with their necks.

Will she have best friends? Will she have boyfriends? Will she be asked out on dates? Will those boys be kind and good to her or will they make some kind of a joke out of asking her out? I can thank the movies for that question: Carrie, She's All That. You can insert whichever you want at this point.

I know there's so many other things to worry about, more significant things. Though that is true, the grief is often triggered by thoughts relating to every day life events that we often think of as we watch our babies grow. I wonder who my son will marry, assuming he does. What will she be like? Will she become like a second daughter to us? Will she be his match and will they make each other happy? When I consider those questions for Evie, I also wonder if she'll be able to live on her own? Will she be able to support herself? Will she be truly loved by a man or will he hurt her without her being able to see the signs? Will she, because of that joyous, loving, open-hearted aspect of her personality, be manipulated and taken advantage of?

I was talking to a mom the other day about the things we find so hard to write and to admit. We are taught that there are things we shouldn't say, shouldn't write, shouldn't feel, shouldn't even think about. Like if we do, we will make those things happen. We're jinxing ourselves, or we're ungrateful. No one says "you shouldn't say that" when we want to say "I'll wake up tomorrow morning with two million dollars in the bank" or "the book I just wrote will be a national bestseller" because it's positive and everyone usually agrees how nice that would be. If we acknowledge that sometimes being a parent (of special needs or typical kids) isn't horribly difficult, and we wish for a break, or we wonder if something bad will happen, we are often inundated with comments like "there are others who dream of having your problems. You should be grateful" or "don't think like that." As if saying those things make them instantaneously come true. We're only allowed to be positive! Ugh. No. Just no.

Why can't we be both honest about the hard stuff, the painful stuff, the challenges of our lives AND still be so grateful?

We shouldn't grieve what might have been because we are so blessed by the babies we have. We shouldn't assume the worst because we know more about T21 than ever before and we know our kids can often lead full, productive, and happy lives.

I know all of that. I'm here to say that it's okay to grieve what you used to imagine. It's okay to feel anxious about the future. It's okay for me to grieve what Evie may never experience, or what she may not be able to do. It's okay. It's okay to look at those beautiful blueberry almond eyes and that angelic smile and know that there will be times that are harder on her than they will be for my son, simply because she shines differently.

I also choose to remind myself regularly that she will have an amazing life. A life that is beautiful beyond what I am able to imagine. She's already demonstrated that. She will continue to shine in her own way. I will not limit her. I choose to remind myself of that AND acknowledge what may not be what we expect when we think of our babies growing up.

One thing I strongly believe about emotions is that if you don't learn to "shake hands" with them, all of them, they will run aspects of your life. I truly believe that if I don't grieve when I need to, I will subconsciously assume that she'll never experience the things I grieve. When I make those assumptions, I may unintentionally say and do things that discourage her. I refuse to do that. I refuse to allow my fear to make her afraid. I refuse to allow my sadness and anxiety to become hers.

To do that, I have to allow myself to experience all of the feelings, without me shaming myself for having those feelings. I have to let them out of their closets and see them, acknowledge them, feel them. I suspect there will be feelings that won't go away, but if I face them they lose their power. They lose their control over my words and actions. They leave room and space for Evie to live her best life, free of my fears. Free of my grief. Free of my trauma. Free of my voice becoming her inner critic and skeptic.

Learning to grieve without judging yourself isn't easy. Learning to grieve without others' discomfort with said feelings leading to you doubting your right to feel them isn't easy at all. For me, one of the best ways I have found to do so is to write them. Name them. Hear myself acknowledge them. Then I can avoid stuffing them. Eventually the pressure of stuffed feelings erupts like a world-ending volcano.

Once I sit with those feelings, I hold my girl close, fall into those beautiful blueberry almond eyes, and marvel at all of the possibilities of my Evelynn.