I bloody love Gluten...


Yesterday at a birthday party, despite bringing a gluten-free lunch & cupcake, Pip had a full-on-give-me-that-pizza-or-I'm-gonna-have-a-full-on-melt-down moment. It was my first taste of what life can be like with this whole Celiac thing, outside of our home environment.



I've been trying so hard to learn & do everything I can about Celiac Disease - Making sure our home & her daycare is stocked with gluten-free food, getting separate toasters & butter dishes because of cross contamination, reading every damn label like it's my job & joining Celiac groups to learn from others ...



But it's hard - And moments like yesterday make it that much harder. 


Now I have to wonder will she steal a kid's cracker at daycare? Will she stuff Playdough (even that has bloody gluten in it) down her hatch? Will she eat something that has been cross contaminated accidentally? Will she freak out at every birthday party or event when she can't have what others are? Will she be able to even comprehend that gluten makes her so sick? 



Gluten, why the hell do ya have to be in so much stuff? And as an added bonus, it turns out, I ABSOLUTELY LOVE GLUTEN - Literally, bloody everything I eat or enjoy has gluten in it. 


So, to help my little girl & to dive in deeper & teach me faster, I'm going to try to be Gluten-Free for a month. Those that truly know me, know that this is HUGE and that by day three, I may pull my own give-me-that-pizza-with-gluten-in-it-melt-down. 


But here goes...



Fade...


12 weeks ago, my husband raced through red lights, telling me to breath through contractions. We barely made it to the hospital, slow-danced through a couple contractions & in less than 45 minutes my big 9.9 pounder was born. And just like that I became a momma of three & obsessively in love with another little boy. 
 

And I don't know if it's because Theo is my 3rd child and I'm that much more busy & tired - Or if it's because Pip with everything she has {Down syndrome, Hypotonia, Heart defeats, etc} stretched out the newborn-baby phase in a lot of ways, but I'm sad.



I'm sad that I'm already giving away clothes that are too small because this is my last baby, and I'll never have newborn sleepers again. I'm sad that he's starting to roll over because before I know it he will be walking. I'm sad that he's cooing because in a handful of months he may be already saying his first word. I'm sad that every night I co-sleep with him is a night closer to him one day sleeping on his own. 



I'm sad it's all happening so very fast. 12 weeks...12 BLOODY weeks. I literally blinked and those weeks are gone. 


I so wish there was a way to stay in this phase for longer. I wish I could smell that notorious newborn scent anytime my children were near. I wish the feeling of being completely & utterly needed when my baby smiles after nursing, lingered longer. I wish the huge-dopey-baby-grin when he hears my voice lasted well past his teenage years. I just wish you could grab life in these precious, precious moments & remember them completely.



But you can't - They fade. And that is what makes me sad. 



When I try to remember what it felt like with Noal & Pip at this stage - I can't. Not really. I can't remember exactly what shade of blue Noal's eyes were even though I stared at them for hours on end {first baby benefit} - Nor can I remember, exactly, Pip's content little nursing smile even though I breastfeed her till she was two.


It fades. The overall memory is there. But the details fade. And I just so desperately wish they didn't have to. 


Hello...


There is this whole "one little word" thing now that is supposed to simplify making resolutions, goals or your focus for the New Year. 

Last year I wrote:

"One word, sheesh, as a writer that is both excruciatingly challenging & utter nonsense...I mean I could pick one of many words, that would carry me into 2015:

- Believe
- Shine
- Give
- Love
- Soar
Balance
- Create
- Grow

But here's the thing, while I could own and really try to live by any of these #onelittlewords that could be applied to my life right now - None of them sit well with me for some reason...What resonates with me and what I keep coming back to, is oddly "Throw caution to the wind". No clue why, but that's where my confetti little mind goes. 


For some reason on New Year's Eve I posted this pic of Pip with the words, "Today I'm thankful for the anticipation of all that is possible in 2015...Hope y'all have a year full of moments that knock your glasses off, make you laugh so hard you don't care about your double chin & is full of chances to throw caution to the wind"...And I guess without knowing, when wishing it upon all of you, in turn I was wishing that for myself." 


And when I look back on 2015, I truly believe I did just that.


- Hello, Jamaica & oops hello Baby #3 

- Hello, learning to let go & breath 

- Hello, facing my fears & giving a Ted Talk

- Hello, finding faith in unusual places



- Hello, things that were meant to change me


- Hello, anticipation 

- Hello, baby

- Hello, new challenge

- And Hello, love 

2015 was utterly amazing - I was stretched, moved, challenged & loved. All things that help to make me the person I strive to become one day. 




Pics by: www.genevievesimard.photography

 But when I think of 2016, the only word that keeps popping in my head is SURVIVE...I don't know if it's because of seeing my best friend deal with the pain of losing her son, the Netflix binge of The Walking Dead my husband & I are on, the one too many surgeries for Pip, the challenges that Celiac Disease now brings to the table, the whirl-winded chaos of being a momma of three, or the recent & scary loss of another friend's little boy, but SURVIVE is all I can think of. 


So, here's to surviving all the beautiful-chaotic-caution I'm gonna throw to the wind in 2016...


Hug Harder Today...


Today I'm thankful when he is scared in the middle of the night he still calls out momma, that he uses cuddles to delay going to sleep for hours, that he plays with his food & frustrates the heck outta me, that he doesn't want to share his toys, pushes his sister & gets annoyingly silly. Because, today I'm thankful he is here.


Today I'm thankful when her eye tears up, I know she has lost her itty-bitty contact that is beyond a pain-in-the-arse to put back in, that she has hours upon hours of appointments, therapies & specialists to see, that she can't eat gluten, takes medication for her thyroid, still wears diapers & absolutely refuses to wear her glasses. Because, today I'm thankful she is here.


Today I'm thankful that he wakes up every 2 hours seeking out his momma, that he pukes directly in my freshly washed hair that now seems like a luxury to clean, that he snorts & makes weird little noises in the middle of the night & that he cries unless I'm holding or wearing him. Because, today I'm thankful he is here.


Seeing my best friend deal with losing her sweet boy to cancer has been heartbreaking - And now another close friend, lost her little boy suddenly & I still can't even begin to wrap my head around how excruciating the pain would be.


So, I'll wake up any hour despite being exhausted to comfort mine. I'll take in each & every cuddle even through I have things to do & Netflix shows to watch. I'll argue the benefits of veggies & negotiate "one-more-bite" deals and I'll give timeouts & encourage silliness.


So, I'll work on getting better every time I take care of her eyes & cherish the its-okay-hugs that make her feel better. I'll drive across the country to see whomever can help her thrive. I'll learn to bloody cook even though I can barely make scrambled eggs, continue holding her hand, change diapers till she's 13 & wear fake glasses myself to encourage her to wear hers.


So, I'll wake up any hour despite being exhausted to comfort, nurse & sooth him. I'll use baby wipes, wear my hair in a bun & pretend I'm the only one who faintly smells baby-milk-puke. I'll sleep less but more peacefully hearing him breath, knowing he is okay and I'll let him cling to me & be the biggest momma's boy out there. 


Friends, you never really know how much time you get to be their mommas, so hug harder today.


All I want for Christmas is Celiac Disease...Wait What?


Every single time Pip's doctor says, "We got the results back from her blood work", my heart skips a beat, I brace myself for the dreaded Leukemia news {heightened risk of developing with Down syndrome} & I breath out gratitude when it's something else...Her heart issues, Hypothyroidism & now today Celiac Disease


Now, don't get me wrong I'm not jumping up in down thanking Sweet Jesus by any means. First, I cry, I swear, I get angry, I get jealous and I get mad, real freaking mad. But then I hold my little girl tight and I try to breath out gratitude.



When the doctor told me, Pip will have to be put under general anesthetic to have a scope and biopsy done next week, I couldn't stop the tears. This will be the 9th time...


9 times I've had to dress her in one of those awful hospital gowns. 9 times I've had to hold her begging God that it's not the last time. 9 times I've had to sing her to sleep in an operating room. 9 times I've nervously sat and shoved Snickers down my hatch in a waiting room. 9 times I've never been more grateful in my life when she's back in my arms in recovery. 


I really let the whole "9-times-pity-party" have it's way with my emotions for awhile today, in between getting angry & swearing. Out loud, in my head, to God, to the minivan steering wheel as I punched it, to my husband, heck I think this time I even swore with the doctor. I just truly feel like me & my sweet girl can't ever catch a break. It's been one thing after the other with Pip medically and I can barely breath in between each new diagnosis. 


Pip has already been & is still going through so much - And now Celiac Disease, I mean this is life changing. It's not like it's just a pill or medication to take every morning, this is a complete life change and means more appointments, another specialist to add to her already full rolodex, working with a dietitian, increase blood work and sooooo many dietary changes.


So, now 2 days before Christmas, Pip will rock yet another hospital gown, I'll eat 7pds of chocolate and we'll do this yet again.



I think you have to choose to be thankful in life and even though I feel like grabbing Fate or God by the neck and screaming, "Enough, seriously enough already." I also want to grab Fate or God in a big-huge-momma-bear-hug and say, "Thank you. Thank you that it's not cancer & it's Celiac Disease."

We will learn to deal and in the meantime, please send Snickers my way.