Fall is here! It’s finally cold here in Northern CA. Well, it was for 48 hrs. It’s warming up now. New seasons always bring new hope. This particular pressure change also brought with it a head cold for me. I included a recipe for my favorite cold busting soup at the bottom of this post. I’ll never forget the first time I got sick as a parent. The moment you realize that you need rest and your child does not care at all, that is a very real moment. Even more so when you are completely responsible for two little people to be carried, bathed, clothed and fed. I’ve often heard that a major fear of special needs parents is “What will happen to them if something happens to me?” I’m sure this is true for all guardians. So, all we can do is trust God, honor the bodies we have and fight the good head cold fight in the meantime.
Besides head colds, I’m happy to report that in the Harris house we have been experiencing many GOOD things. Good weather, good company, good food, and good progress with Jane. For months we have waited for her current medication to actually DO something. Two weeks ago, with the help of Jesus and so many prayers, it really started making a difference. I hope to not reduce that statement to filler words on a screen. I’ll rephrase and say, for two whole weeks we have not seen one major seizure possess Jane’s body. Prior to these two weeks we were seeing up to seven a day!
This large, miraculous break is something we are so, so, grateful for. It is tempting to live in the mindset of “This is a miracle window”. As in, “Enjoy it while you can, because this is only temporary”. This is, after all, how it has gone in the past with Jane. She’ll make great strides, and then we will see things regress. That is the difficult part about all of this. It’s not always the things we have yet to see her do that leave us sad, it’s the things that we have seen her do, and then have watched them get robbed by aggressive, invasive seizures.
So, instead of living in that land, I decided this would be a post about all the things we are ENJOYING. All the things to be fond of in this season, in this “new normal”.
Foremost, this season has been marked by laughter. Very little sleep but lots of laughter.
Jane has been laughing. A lot. And all the time. Sometimes through the night. It’s hilarious how little sleep we are getting. And she seems to think so too. I think she is relishing in the fact that her brain is getting a much needed break, and she is filled with joy about it.
Jane doesn’t make a ton of fuss when she wakes up in the night, but there are tell tale signs that her stirring is happening.
Jane has very sensitive hands so she does most of her discovery with her feet. Her bed is up against a wall so she can’t weasel her way onto the ground, so she finds great joy in removing all pillows using only her feet and kicking the wall repeatedly through the night.
When the girls are asleep, the house is still and we are at peace, Rich and I know that its either time to A. Have a deep meaningful chat B. Have a deep meaningful “chat” C. Go to bed. But often in the still of the night we will hear a haunting “THUD”. We freeze, we hush each other silent and we hold our breath as to not attract the creature that is kicking the wall.
If you’ve ever seen the first Jurassic Park movie you know exactly what I’m talking about. “Nobody move a muscle”. Jane is T Rex, and she is simply reminding us that this is her house. And she shall rule unattended. For that is the natural order of things.
This is how the stirring occurs. Then we hear her start to shriek like a seagull, experimenting and discovering her voice all over again like she did at a couple months old. Then Rich will go in to remind her it is an ungodly hour and she should rest. On a particular morning a few days ago, he did this around 4 am. All I heard in response was an instantaneous fit of belly laughter from Jane. He didn’t say or do anything, he simply walked in her room. But the presence of her Dad, man was it hilarious.
It is so fun watching Haven respond to this. She is so curious and concerned about her big sister who, for the most part, sits in one spot and doesn’t do much. But now that Jane has been laughing. Oh boy, its a party. A sly smirk will come across Haven’s little mouth as she intently watches what the bigger curly haired human will do next. And for what may be the first time in their lives, I am experiencing the joys that can come when siblings can entertain each other with no adult prompting. A to the MEN!! How do you think I got this blog post done? Just kidding, they were both napping while I wrote this because NOBODY SLEEPS AT NIGHT ANYMORE.
Jane’s laughter has leaked to Rich and I as well. We have always found the humor in our story. We just love to laugh and we are those kind of people. The Office TV show is what got us through Jane’s first year of life. That and Jesus, of course. But a very healthy dose of Michael and Dwight as well (Steve Carell if you ever see this. You are Jane’s godfather). While people may look upon Jane concerned and melancholy, Rich and I see her for what she is, a quirky toddler with very little self awareness. She has never felt shame, embarrassment, fear of man, and she doesn’t know that “caring what people think” is even a thing. And that makes for some hilarious moments. Especially on very little sleep.
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Kick a Cold/ Who Needs Sleep Soup
Feeds 3 with leftovers
(I don’t “do” measurements. Bare with my vague recipe)
Chicken Stock (Bone broth preferred – This is super easy to make with a crockpot. Google it!)
Chicken (From whole cooked chicken preferred. For this recipe I used leftover thigh meat)
4-5 Large Carrots
4-5 stalks celery
1/2 onion
2-3 cloves garlic
1 Bay leaf
3 stalks kale (Or other leafy green. For this recipe I used leftover beet greens)
A starch of choice – Noodles, rice or potato (I used potato)
Salt & pepper to taste
1 tablespoon turmeric
Generous helping of The Pepper Plant Hot Sauce (We LOVE this flavor and it is full of clean ingredients)
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Saute chopped carrots, onion, and celery in soup pot with oil or butter.
Once veggies are starting to soften (still a bit crunchy is okay since boiling will take place later), add your chicken stock. I add as much as I have, for as large as a helping as I want to make. If I run out then I fill the remainder with water.
Season liquid and veggies with salt and pepper and a bay leaf.
Add chopped potatoes and bring to boil. (This is also where you can add more carrots, celery or onion based on preference)
Let boil for 2-3 minutes then bring to simmer for 1 hr or more.
When 20 minutes are remaining, add chopped cooked chicken, greens, garlic, and turmeric (I like to keep these things as fresh as possible to enjoy all the nutrients they have to offer and to not dry out the chicken.)
When all has become tender serve hot and top with Pepper Plant Hot Sauce!
Laura says
Thank you for sharing your life with us ❤️ Your family is a breath of fresh air and I’m so thrilled for Jane! And you and Rich!
Stephanie C. says
Thanks for the uplifting post! Belly laughs are contagious. Beautiful photo of the three of them!
Mona Tucker says
Dear Rich, Hilary, Jane and Haven:
You’re a team and I applaud how you manage to figure out , or at least cope with, some very difficult problems. Your brand of determination and imagination is amazing.
Love,
Aunt Mona.
Hillah21@gmail.com says
Such a compliment, thank you Aunt Mona.
Christina Pann says
AHHH so much love!!!