Premiere: from the bottom

Yesterday, I decided that I needed a place to share information with a broader audience about my life living with a child who has a chronic illness. Navigating that can be tricky for anyone, much less a Utah mom. I'll get to those specifics in a minute. Let's just say that yesterday I hit bottom. You know it if you've been there. The day begins and continues with tears, frustration, anger, fear, prayers, more bad thoughts of when will this get any better, and how will I put dinner on the table and move on with my life. Seriously. If you're a mom, you've probably been there once or twice, maybe more. No more details necessary when your kid is sick. I don't have to spell it out. You know.

I am a mom. I live in Ogden, Utah beforewhich, I was not a mom. Maybe this is stating the obvious, but I'm a little bit older than most moms here. (Hint: I'm way past my thirties).

 In fact, my first day at a new job in Utah promted the question I never thought I'd ever hear, "So, how many kids do you have?" Back then, I had to say, "I don't have any kids." Queue the judgmental, "well then," glare, coupled with an eye roll, and she never spoke to me again.

Utah is a beautiful, yet quirky/fascinating place to live. The views from my windows are breathtakingly beautiful, painfully so some days. Smart people live here. Some really, really smart people live here who could live anywhere in the country. And some could live anywhere in the world, they are so accomplished. Part of the reason is that there is a university in my town called Weber (pronounced weeeeber) State University,

which is where DH works as a geoscientist, and where there is an establed basketball reputation. Ogden is rapidly becoming a big city. There are a lot of doctors who live in this city that I call home. Demographics? A lot of good, hardworking, middle class and upper middle class, uber wealthy and uber poor, even homeless. Ogden has a "reputation" for being a "badass" town. There are Rad Ladies. There are Junior Leaguers. There is Ladies Literary. There is Ogden Symphony Ballet and there is a LOT of outdoor high adventure, sporting activities and outdoor recreation. And there is the beloved Weber Pathways, my favorite local place for things to do that don't cost a thing. Why am I sharing this bit of information? It sets the context that I'm just like every other typical mom out there. I live in a city that is fabulous, mostly, for being everything that connected everything from East to West, surviving a bad reputation (you gals know what I'm referring to), and is still hanging in there, despite what people have to say about her (yes, you snubby sometimes Salt Lakers). There's no reason to be depressed about anything living in Ogden, Utah! Right? We have so much at our doorsteps! We have everything, including award-winning medical care facilities, including two amazing hospitals, ORMC and MD. Ah, Ogden, here there are immigrants, legal and illegal. But I'm getting carried away. Setting the context.

  Sweet smiley boys

Yes, there are a lot of good-hearted, well-meaning, loving friends, acquaintances and neighbors who have no clue as to what I and my little family have been going through the past ten months. Why is that? Because when I do venture out to share private, detailed information after being asked, I'm met with, "No...but he's so young!" "What...the...????" And of course, "We'll be keeping you in our prayers." Yes, a lot of that. Which is nice. Very nice. "Nice" is what Ogden is all about. Because what they are thinking is, "Thank God I don't have to deal with that! Poor girl...no wonder she's so haggered-looking and grumpy all the time." I used to smile at everybody and tell anyone I crossed paths with a booming "Hello, How'Ya' Doin'?" Now I'm crossed by whispers of, "How does she do it? Gosh, I had no idea!" And the stares, avoided gazes and head turns. Yesterday, someone actually kept their back turned to me and didn't even greet me at the front office when I walked in to school to pick up little G to take him to Primary Children's Medical Center for a weekly visit before dismissal. And quite honestly, none of it is comforting. I've spoken with other moms who fear speaking truthfully and honestly about this point in our lives where we don't know whether our child will make it from day to day. And that's OK. That's what this ( I won't call it a blog) forum and page is for. This site will be to help those moms in Ogden and outside of Ogden who  might need a little support. Because I've found support in very few places. Family? My family doesn't live within 1,000 miles of here, which is typical of most military families. Hill AFB http://www.hill.af.mil/ is near Ogden, and lots of people come and go here and don't have support, either. They don't want to bring their friends "down" - for fear of losing them. So they say. So here's a safe space, mammas! I've got your back.

A few of my mommy blogger (spell out, really awesome writers and family breadwinners) friends suggested I begin a new blog (right...like I have time for that) outlining what I'm going through to develop a support group and network for other moms going through the same things I've been trying to cope with. Chronic illnesses tend to carry baggage along with them in the form of judgements and guest prognosis delivery. 

By no means am I saying dads aren't involved. It's just that in my case, dad is barely hanging on himself, and needs to keep his stressful job to support us while navigating our broken healthcare system. This blog will dive into that later. That will take at least a week to explain. Before I go any farther, I must admit that they were all right. I do need a place for first-person, unfiltered conversation where other moms can come for support and research, reading, commenting, questioning, advice and information! I do need a place for others to share their experiences, because we don't all have tons of time to keep running ourselves ragged without having a shoulder to lean onto or a place to visit in the waiting rooms when times get tough.

There's plenty of that on the internet, I know, but not about the topic that I will be sharing most of the time. What's the topic? Non-curable, chronic diseases and the moms who live with the children who are raising them. I will be covering several, but not all chronic illnesses, and I will be starting with the invisible (not mental) ones. I will be sharing childhood, early-onset illnesses that no parent plans for their child's future.

Nobody here wants to be "negative" or "bring their friends down" or "speak the truth" or "yell at the top of their lungs that "Life isn't fair!" Because you know what? Sometimes that's true. Sometimes life sucks. And that, "It's all going to be OK." Just pray. It's OK. It's not OK. What did she say? It might be OK? IT IS OK to be sad, negative, angry, upset, mad, pissed off at God or the Universe or whatever you believe in or don't believe in because our children, our futures, our very essence of living and being has been altered. My child is sick. My child is really, really sick. My career, whatever there was of it, is over, as I knew it. Why? Because it's impossible to sustain up to 3 doctor visits/week, a job, bills, a sick kid and all the responsibilities that go along with it and stay employed 9-5. Put dinner on the table, keep the hubby happy, keep the neighbor's happy and dole out volunteer work and thank you letters and homework. 

So what? And he may get better. And he may not get better. But right here, right now, he's not going to be cured. That's what the medical field has told me. That's why doctors have dropped his case. That's why the insurance company doesn't want to pay for out of network second opinions. Even without verification of having tested all possibilities of other symptoms unrelated to said diagnosis/prognosis. Yes, his symptoms might? ...will be relieved and he can be comforted (by Gerard's Mom) and we can do whatever we can do to help him, but he has an "incurable" disease at this time. He is in chemotherapy. 

Yes, you read that right. He can live a (somewhat) normal, beautiful life as long as I can manage his symptoms (and that's without the doctor's involvement). And he is a beautiful child. He always has been, just like every other child that is here and not here and now. He's happy, and looks completely healthy, and you'd never know he's sick. It's an "invisible" disease, they call it. (I'll debate why that's false later). And he is the most pleasant, wonderfully patient person most of the time. His friends do not need to know how sick he is - but somehow, they know. Just say chemotherapy. Watch your friends run like the wind!

The Bottom.

There's no place to go but Up from there, right? From the bottom?

Wrong.

Some days the bottom really does fall out and I go even farther down, down, down. And that's where I was yesterday. Still with me? If you are, you've been "down" there and understand. Eventually, you plunge face-down into the water and let gravity raise you right back up. Without any help of your own doing. And that's what I'm here for.

So, I decided to write and ramble about some of this stuff to offer a little bit of hope. For me and for other people who know me and who don't know me. There needs to be some hope and a little smile some days to read while you're having that morning cuppa. Myths must be dispelled. Untruths and hateful comments must end in order for healing to take place.

So...Here's my hope for you for today.

Today is a great day. Today I will tell (You), someone, something, any little sweet thing, that I appreciate and like about you. Today I will tell myself something, any little thing that I appreciate about me. Today I will close my eyes, give thanks, and breathe from my belly happiness, love, joy. Today I will laugh at least once, and maybe at this funny memory not so long ago:

A few weeks ago, a college bestie announced that they were coming to town to celebrate a big success. It was an extravagantly big to-do...which means lots and lots of (wealthy) people were gathered at an after-work party in a swanky and sleek, newly designed space in Salt Lake City. I was enjoying my time laughing, reminiscing with my friend, meeting new people, and wanted to take a few pictures for posterity. It was the first night I'd been away from Gerard in a long time. I was tired, but happy. I stood up from my chair, and whoosh, my skirt fell straight down to the floor! Yup. In my head I could hear it like a cup crashing on the tile floor. And it was, a tile floor. Lightening speed fast, I dropped down (definitely mooning somebody behind me), and quickly grabbed my skirt, holding it up and turning from side-to-side to see if anyone noticed, and asked my friend, "Did you see that?" To which they replied, "No, I didn't see anything!" I'm fifty shades of red in the face and one of the partners says, "I saw it," chuckling, and raising his glass. So I said, "I guess it's a good thing I wore opaque tights, then! Lucky you!" And we all laughed.
That's never happened before.
Ever.
And I laughed even more.
And we laughed together even more.
And I'm laughing right now.
And that, my friends, is how you enjoy life's most embarassing moments. By doing them in front of perfectly perfect strangers while beef is being flamed behind your bottom.
Physical comedy at the Roth Distribution Center; the most beautiful kitchen (very modern, so you traditional people stay away and no hating) distributorship of high-end appliances in Utah. Thank you, Mr. Roth for allowing my friend(s) to compete and win the design competition. Arch 11 holds a place near and dear to my heart, even if they are located in swanky Boulder, CO. 

Need to check out a space that is so "not" typical Utah? Get yourself to Foothill Village and visit Roth (shameless plug again). And no, I'm not getting paid to post this little review or share these links. I just happen to adore good design and beautiful spaces. And I miss my friend terribly. Ya hear that?

Remember your college friend you could tell anything to and not be judged? Remember that person whom you could just talk all day and night and fall asleep next to and never tire of each other's company? Well...that was this friend. And I'm so very grateful we got to visit. If only for a little while. And now I'm grateful for one of my very most embarassing moments to share with the world. Because it started my evening with a laugh.

Laughing through chronic illness is very, very important. In the coming days, weeks and months, you'll understand why.

Meanwhile, Chef on the Go - Ogden, my little catering and cooking class company, is on hiatus. I've got enough business to keep me busy, and the city turned down my offer to convert a home into the next Chez Panisse. So I'll need Alice Waters to come over and visit the zoning commission with me to make that happen. They are terribly shortsighted about what is needed in my very own neighborhood. 

Until next time sweet peas...

Bonsoir