My Life As A Mom (with chronic illness)

I woke up this morning at 3:35am to the sound of BG softly crying “Mommy mommy mommy” and reaching out for me in a sleepy haze–we are still cosleeping and I was perpendicular to her 2ft away on the bed, and I reached out involuntarily and pulled her to me. She’s got a cold and is not feeling very well. Unfortunately my bowels woke up as well, and I have to ditch BG and urgently run to the restroom. Of course BG starts wailing since I’ve abandoned her and I’m sitting on the toilet frustrated as f*ck that:

  1. My kid is in distress and continues to cry no matter how many times I repeat “Mommy is just on the potty and I’ll be right back!”
  2.  I’m awake at 3:35am
  3. I’m stuck on the toilet until the cramps subside and then I’ll have to take my 40mg of prednisone before I climb back into bed to soothe BG

I finish toileting and hastily toss back my prednisone, hurry back to bed and scoop up BG and hold her and rock back and forth coo’ing “It’s ok, mama’s here baby” as she snifffles and buries her head in my shoulder. I then decide we should change her diaper and give her a dose of tylenol, so I have to leave her again to go grab a new diaper from the nursery and tylenol from the kitchen. Again she wails “Mommy mommy mommy” as I stumble around in the dark trying to get it together. I hear Mr. MLACS blissfully snoring in the guest room and am annoyed because:

  1. He gets to sleep through this while I am stressing
  2. He obviously is not wearing his CPAP mask like he’s supposed to

I return to BG and get her diaper changed and give her a dose of tylenol and a drink of water. Then I pull her close to me and nurse her on the “business boob” (my left side) as the right side is “closed for business” and no longer in use. BG tucks into me and within a few minutes she has drifted back to sleep–it’s almost 4:30am. I look at the internet on my phone for a few but I’m exhausted so I set it down and we sleep in until 8:26am! That never happens! BG has been up by 6am every day this week (yawn). But of course when Mr. MLACS is home she sleeps in. Naturally.

Mr. MLACS slept in too and greets us in the living room. I turn on cartoons and situate BG on the couch. Then I turn my attention to the leftover chicken wings from last night–I have been waiting to eat them for breakfast. Since Mr. MLACS is home I let him give BG her Stoneyfield organic strawberry beet yogurt and apple spinach squeezy pack for breakfast, while I stuffed wing stop original recipe mild sauce wings with blue cheese dip in my face like a true carnivore.

I sit at the table and in order to see BG and Mr. MLACS I had to move aside this gorgeous arrangement of farmgirl flowers that arrived yesterday wrapped in burlap and brown paper–a mother’s day gift from BG courtesy of Mr. MLACS. Some of my favorite flowers are included–pink peonies, lavender calla lillies, and purple tulips amongst exotic greens. It’s perfect. Mr. MLACS put very little thought into my birthday or our anniversary and I was disappointed, so the farmgirl flowers for mother’s day were his attempt at redeeming himself. Well done, Mr. MLACS, well done.

Mr. MLACS has turned on the movie “Zootopia” at BG’s request–the main character is a rabbit so BG will say “Bunny! Hop! Hop!” when she wants to watch it. Which is ALL the time. But it’s very entertaining because BG is in love with a song on the soundtrack called “Try Everything”, by Shakira. And in fact, she gets excited every time is comes on because she LOVES to dance! And the cutest thing–she actually has choreographed a dance with Mr. MLACS, complete with lifts and dips and a deep bow at the end. So as I’m stuffing my face with chicken wings, I am treated to a performance by Mr. MLACS and BG. I clap wildly and tell them they are wonderful dancers! My heart could literally burst every time I see BG dance with her daddy.

I have a 10am appointment at Labcorp to have my blood drawn to check serum levels of Humira prior to my injection today. Labcorp is a solid 40 minute drive from where we live. So I hastily wipe up my saucy-dippy mess and rush off to brush my teeth and change my clothes. I look in the bathroom mirror–yep–my face is still fat due to the prednisone. Aaaaand my hair is horribly frizzy. I wet down my hair and try to brush it into a ponytail without a bunch of little hairs sticking out–I wish I had some hairspray but I never ever remember to buy any at the store. Uhg.

Then of course I have to use the toilet and that tacks on 10 minutes to my already tight schedule. IBD is such a PIA (see what I did there?).

I transfer my keys and wallet from the diaper bag to my purse. Then go to kiss BG goodbye–she says “I sad mommy, I sad”, which is new and I have Daniel Tiger to thank for teaching BG about emotions. Maybe I am not such a horrible parent for letting her watch hours of PBS cartoons every day? I tell her “Don’t be sad! You and Daddy are going to play and have fun! Mommy is just going to the store and I’ll be back”. I kiss and hug her and she kisses me and says “Bye Mommy!” And I’m off.

I get to Labcorp and it’s actually not even crowded–a rarity. Sign in. Pay them money I owe. Decline to pay them the “estimated patient responsibility” because f*ck that–they can send me a bill. Am immediately taken back and have a warm conversation with the phlebotomist. Then off I go.

I called Mr. MLACS to see what they were up to and they were getting ready to go “do things”. I said I thought I’d grab a coconut milk chai tea latte from starbucks and then head to Trader Joes for a few things–namely fruit and gluten-free bagels. I was practically giddy about my little “mom-venture” even though it was really tame by any standards. To shake things up, I decided to go to a starbucks I had never been to before.

I know, I am SO wild and crazy.

But to further shake things up, I tuned my SIRIUS radio to a hip-hop station and cranked it loud enough that the people next to me at the stop lights could hear the beats. Yeah. I am a muthafuckin’ gangsta. Rollin’ hard with my car full of reuseable shopping bags, extra diapers, toys, and floor littered with annie’s cheddar bunnies and empty squeezy packs. Like a boss.

So I get to the “foreign” starbucks and am excited to see that it is right next to this faaaaabulous new grocery store I have been wanting to check out. I grab my coconut chai tea latte–a venti instead of a grande–because it’s muthafuckin’ muthas day yo.

Then park and walk into the grocery store… it’s AWESOME! Everything is new and it’s huge and first thing I see is cut up cantaloupe for $1.99 per package–what a deal! I meander around and see a container of strawberries for $1.97! Of course they aren’t organic but at that price I am willing to ingest a little GMO fruit laced with insecticide. Grab a few more things and go to check out–happy to see that *for once* I qualify to use the express lane because I have exactly 10 items. I am a bit jealous of the guy behind me because all he has is alcohol and I would LOVE to drink a large glass of  moscato with some of these GMO strawberries floating in it, but alas, I would be a fool to drink when:

  1. I’m actively flaring–alcohol is inflammatory. Nope.
  2. I’m taking Humira (which says “no alcohol”) and like… 10 other medications… so my liver is already working way to hard.

Giving up coffee and occassional alcohol sucks. F*ck IBD for that.

My check out girl is really pretty–hair fixed, make-up on, nails done–so I lean over and tell her she looks really pretty today. She lights up and flashes me a million dollar smile.

I put my groceries in the car and take a couple sips of my coconut milk chai tea latte. Then call Mr. MLACS, who is out and about with BG “doing things”. I tell him I had forgone the Trader Joes GF bagels and shopped at the faaaaabulous new grocery store instead. And now heading home. He says he’ll see me there, as BG is about ready for a nap.

Now here is my favorite part of the day: I turned on the radio and it was a mix of Nas’s album “Nastradamus”. Which is hip hop at it’s finest. I turned it way up and reminisced about my days as an exotic dancer–I used to love to dance to hip hop. I used to actually cross paths with all sorts of players, pimps, gangsters, club owners, promoters, etc. etc. on a nightly basis. They knew who I was (or at least they knew my stage name). I used to get off work at 4am or 6am and go to breakfast with the girls or to the grocery store when nobody else was there–just me. I had an exciting life, full of drama and intrigue. While I nodded my head to the rhythm and flow of Nas, I let those memories wash over me. I used to be such a badass.

But I was also very lonely.

I didn’t belong in that kind of life. I didn’t do drugs. I rarely drank. And towards the end of my exotic dancing “career” I yearned for a husband, a home, an SUV, and a baby. I just wanted to be “normal”.

Then I met Mr. MLACS in the club I was working at and that was it. I knew I was going to marry him when he said “You don’t belong here”.

But now that I’ve fulfilled my dream of being a suburban stay-at-home-mom, I realize “I don’t belong here” either. I have had a crazy life–one of the clubs I worked at in Hawaii was a front for New Zealand mafia. Those nights I danced at Spearmint Rhino in Vegas and met the real-life version of Tony Soprano. I could go on–I lived that double life for 10 years (me by day, stage name by night). Also, I’m chronically ill and that–moreso than my “double life”–makes me feel isolated from other people. At least exotic dancing is interesting. Telling people about your chronic illness never goes over well. Both of these things are huge parts of who I am, but I hide them.

People who see me now see a suburban mom driving and SUV through the starbucks drive thru on her way to the supermarket. They don’t see who I was before. They don’t see who I truly am now–my struggle with chronic illness.

I turned down the hip hop music as I entered my suburban neighborhood. When I turned down my street I saw Mr. MLACS and BG getting out of his truck and I rolled down the window and greeted BG–she lit up when she saw me and jumped up and down. I parked and she came running up to me with a gift bag, excitedly shoving it at me. She is really into “surprises” lately and we “surprise” Mr. MLACS with something every time we go to the store–things like chocolate milk or deodorant–and when he gets home I hand it to her and she goes running up to him saying “Daddy! Daddy! PRIZE! PRIZE!” So when I saw her bag for me I whispered “Is this a ‘prize for ME?!” And she clapped her hands to her cheeks and whispered back “Prize Mommy!”

She is so precious. So, so unbelieveably precious.

And in that moment life was beautiful and perfect and my heart was so full it felt like it would burst.

I am a Mom.

XOXO,

MLACS

 

 

 

 

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17 thoughts on “My Life As A Mom (with chronic illness)

  1. Awww this is so sweet. I am sorry for the beginning hard parts but so very happy you see such beauty in a tough medical situation. Xo

  2. I love the end of this post. Your daughter sounds amazing. I’m sorry things have been so rough for you recently and I hope you get better soon!

  3. So bittersweet. Memory is a fickle thing. And the loneliness… oh my. Yes. I feel more lonely than ever at the moment… imposter syndrome even. I’ve come to realize I don’t much like most humans…. but enough of that. On the end of this post, I have so much joy for and recognition of you. Yes. Yes. A 1000 times yes. And while nobody here is a big Shakira fan that song has been the soundtrack for many fine young and older dance moves ’round our abode too. Beautiful.

  4. wow, you have led an interesting life! Would love to hear some stories over some Mocktails 😉
    I’m sorry that having a chronic illness can be so isolating and makes being a parent even more challenging. BG sounds like a lovely little girl, so sweet! x

    • Oh I would love to trade stories with you! And yes BG is a very intelligent and vivacious child and I am so grateful to be her mom! Always worried about living up to the task of parenting such an exceptional little person. As for the rest–yes it’s hard. Being able to talk about it on the blog helps immensely though! I appreciate the support. XOXO

  5. I’m so sorry for the medical troubles and how it eats in to your time with precious BG. But at the end of his I had a big smile and understanding. You’re doing it, getting through it, persevering. I’m so happy you and BG have each other. xxx.

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