Sunshine and rainbows

Not all days for our family are easy. Some of them are difficult emotionally, overbooked, overwhelming, or exhausting. Sometimes I can’t wait for my head to hit my pillow at night and sometimes I wish my parents were nearby so I could ship the kids off to their house for a night while I got some sleep. In my own bed. Alone. Without a foot in my face.


Today is one of those days. One of those overwhelming-too-much-going-on-kids-in-meltdown-mode days. My daughter is in her room crying as I type, deeply upset by the consequences she suffered after a series of unfortunate choices this evening. Apparently, not being allowed to have dessert before dinner is reason enough to tell me that she wants me to die. This is not the kind of talk she hears in this house, although I will take responsibility for participating in an argument a lively discussion and/or using inappropriate colorful language on occasion. But she is only four years old. And where on God’s green earth could she possibly get her hyperbolic dramatic flair??…

Following in his sister’s footsteps is the little brother, who has become very vocal about what he likes and doesn’t like and what he wants to do and doesn’t want to do. And in his own dramatic style, he covers his face when told “no.” As a developmental milestone, this is thrilling–he gets it, he understands what “no” means. As a parent, it is usually adorable. Unless I am already exhausted. Then it’s not so adorable.

Ok, it’s still pretty adorable, but you know what I mean.

So today I’m exhausted. I can feel my patience wearing thin and my anxiety building. We were out the door before 7am and we got home after 6pm. After work, I took Eli to physical therapy while my sister-in-law took Evie to dance (thank you, Sara!!). I made dinner for the kids, swept the kitchen floor, packed lunches for tomorrow, put out the fires unique to preschoolers and babies, bathed my darling children, earned the rank of worst mom ever (according to my daughter), tucked in the kids, and collapsed onto my bed where I am now hiding from all the other things that demand my attention.

It feels like there are just so many. My kitchen floor desperately needs to be mopped and my living room and dining room need to be vacuumed. There are mounds of laundry to wash and almost as much clean laundry to put away. There are bills waiting to be paid and taxes waiting to be filed. I need to finish cleaning up from dinner and find something to eat myself. The dogs are ready to come in and they’re probably hungry, and I’ll have to keep my eye on them so they don’t crap in the house 🙂 (they seem to be fond of doing that when my husband isn’t home). There are still things to carry in from my car, I haven’t worked out yet today, and there is plenty of work I could be doing from home to catch up.

But I’m not doing any of those things. At least not at the moment. In a few minutes, I will let the dogs back in and make sure they are taken care of. Spoiled even. In a few minutes, I will finish cleaning up from dinner, think about folding some laundry, and make plans to mop the floor. Tomorrow. But now…well, now I want to take a few more minutes to reflect on my day…

I started this blog to be transparent. To share our journey. To document what it’s like to have a child with special needs. And I’ve just shared with you the nuances of a less-than-perfect day. I’ve admitted that I’m tired and anxious and cranky. I’m admitting that there aren’t enough hours in the day to accomplish everything I need to do. And now I want to be very clear about something else: it’s not because of Down syndrome. It is simply because life is hard sometimes. For everyone.

My daughter would be just as feisty if her brother had been born without Down syndrome. If my son didn’t have Down syndrome, my kitchen floor would still need to be mopped and the laundry would still be piling up and I would still insist that my children eat their dinner before their dessert. Yes, without Down syndrome, I wouldn’t have to spend time at therapy, but make no mistake–there would be something else to fill that time. Because that’s just life. I’ve been busy my whole life. The only thing that’s different now is that I have to shift my focus to my children from myself. And as a parent, I would have to do that anyway, even if my son didn’t have Down syndrome.

The truth is, I enjoy taking Eli to therapy. It’s exciting to see him progressing so well. And I enjoy watching my daughter dance. It’s fun to see her pour all that energy into something constructive. I certainly don’t enjoy mopping or doing laundry. I don’t enjoy cleaning up after the dogs or washing dishes or being exhausted. But even on these long days, these hard days, these imperfect messy days, I still love my life. And I still wouldn’t change a thing about Eli, including his diagnosis. I wouldn’t even dream of trading these days for easier therapy-free days. Because these are our days. They are our moments. And they are all at once beautiful and frustrating, exhausting and exhilarating. This might not have been the life I would have chosen for myself, had I been given a choice. But I’m so glad it’s the life that was chosen for me.

Like any other family, we face our challenges. It’s not all sunshine and rainbows. But life never is. And that’s ok. It’s really ok.

Just look at them–of course it’s ok.


One thought on “Sunshine and rainbows

  1. Stephanie, this is SO beautifully written! You certainly have a knack for words. I obviously can’t relate in a lot of ways, but in the overall message, I totally can. Would I have chosen to have CF? Certainly not. I don’t think anyone would. But would I wish my life were different? No. As much as CF makes life harder, sadder, more frustrating, it also makes it richer, deeper, more precious. Thank you for being so honest and transparent 🙂 I can’t wait to read more!

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