It's not the same. It's not fine. It's just not.


So my daughter is a kleptomaniac & a sneaky one to boot...


Driving home from the Dentist before we battled 3 other appointments later in the day, I grabbed my purse, sitting peacefully on the passenger's seat beside me with hopes to grab some moula to pay for a coffee.  


Instead when I reached inside, the entire contents were swimming in sticky, warm, emergency-low-sugar-source apple juice. My 3 year old had apparently snatched one of the Dentist's pokey tool things & plopped it into my purse, in turn, popping the juice box and creating this delightful hell-of-a-mess that I totally had time for on a day like yesterday...


That to most, would be enough to call 'er a day. 


But instead I got swept up in a Déjà vu so unbelievably similar to last year, and the year before, and by the looks of it every year moving forward. 


Pip has to have surgery AGAIN. 


Tubes, Adenoids & Tonsils this time. And I know a ba-zillion kids get this & all will be fine. But it's not the same. It's not fine. It's just not. 




9 times already 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. 


This will be her 10th surgery. 10!!!! She's 3 years old. My kid can't catch a freaking break for anything. My kid has more complications and it's starting to feel like she has something "wrong" on pretty much every piece of her little body. My kid not only has to now deal with the pain & healing side of an extremely sore throat after the surgery, she has to survive it all by still maintaining blood sugar levels and Type 1 Diabetes & stick to a Celiac compliant diet. 



I'm starting to get real mad. I mean, seriously. It's pretty unbelievable that one child, that one family, that one momma can deal with so, so, so much. It's like the universe wants me to break. And I don't have the slightest idea as to why... 

Aunt Donna is rocking our #PipsArmy shirt - Get one HERE

All I know is that yet again, I'm calling on #PipsArmy, I'm crying in the pantry, I'm stocking up my Snickers and I'm refusing to sink. 







#feckoffuniverse #seriouslyfeckoff

How to build back up - Creating a new "norm"....


If you've walked this journey with us, you know by now I'm not a fan of Type 1 Diabetes. You know I cry in my pantry on hard days, call my daughter's Dexcom her brave patch & constantly promise my son he does not have to ever have needles like Pip. 



And those that know me closely, know I am really struggling. I'll have a few good days, where Pip's levels seem stable, her energy is good & where I finally feel I'm understanding carb counting & insulin corrections & have prepped everyone who is in her life about the Glucagon injection. And then WHAM, they'll be days that hit me in the face with the stress & heaviness of this disease...

 

Last night my husband and I had to change Pip's Dexcom. Youtube inserting a Dexcom, gasp in horror, pour a drink and chug it for us. Doing this is ABSOLUTELY horrible but also ABSOLUTELY necessary. Because at this point Pip can't express verbally when she is feeling her blood sugar drop & if it's in the middle of the night when we can't see physical signs, the Dexcom has an alarm that lets us know. Pip needs it. I need it. It could be the matter of life and death.



So despite, the nightmare to insert, it is worth it. Not only has it been so helpful at school, it is allowing me to sleep a wee bit in the night. And I say a wee bit, because it's so staggered. Little pockets of sleep, deliriously painted with vivid wacked out dreams. I've seriously never know sleep deprivation like I have now - This is worse then when Pip was in heart failure and I had to pump every 2-3 hours for months around the clock. I mean, not only am I still nursing Theo & rocking him whenever he wakes {I absolutely dare someone to leave a comment about how he is 10 months old and shouldn't be waking in the night - I won't want to punch you in the neck or anything!} but I'm still despite the Dexcom, checking in on Pip all the time. 


I've even gotten to the point where I include Noal in the mix everytime & he knows it. A few nights ago him & Deacon seemed to be sleeping so I went in to kiss his forehead. Just as I was about to plant my smackers down, his eyes popped open and he squealed "Gotcha momma". Was very horror movie-ish until his little boy giggles stopped the wee bit of pee that was thinking of coming out.


Point is we are all trying to make this our new "norm", but Sweet Jesus, I wish we didn't have to. But like anything Pip has been through, she constantly is showing me over & over what a warrior she is. Last night as I rocked her to sleep, I couldn't help the tears from falling. It's almost our thing now, she holds me while I have a good cry. Every couple of minutes she would pop up, hold my face in her two little hands, kiss my nose, whisper & sign "love you" & then honk my nose three times and say "beep beep" to make me giggle through the tears. It's like she knows I need these moments to rawly {is that a word? It should be} lay it out & as I do, we build back up strength together. 



And speaking of strength - This week our "Fight the Good Fight" shirts are being printed & once mailed I can't wait to see #PipsArmy rise together & lift up my little girl. I can't wait to see y'all wearing them and the doses of light it will bring to my family, the awareness it will inspire & hopefully the fight for a cure it will embark. 

For more info about #PipsArmy shirts see here:

To pre-order your #PipsArmy "Fight the Good Fight" shirt click HERE
To pre-order your Calendar & shirt combo click HERE

It isn't fair....




With Pip, I'm thinking all those things plus so much more. Yesterday while getting their backpacks ready, I had to wipe tears away. I had to fight back the anger that was almost choking me, because this is all so God damn unfair. 



Instead of just getting to pack my daughter a lunch & a set of clothes in case of an accident, I had to count out skittles and little rocket candies so that the teacher & EA have emergency sugar on hand to give if she goes low. 



I had to stock up on test strips and lancets so that others can poke her little fingers and report back her blood sugars.


I had to make apple juice and crackers and dried mango fit in a little Tupperware box & pray it's enough to help her be okay in case she goes unconscious or has a seizure.


I had to make a little bag seem cute so an EA won't mind taking it to recess or gym class or wherever Pip may wander. 


I had to make up labels & instructions upon instructions, all while feeling so very defeated & stressed outta my mind. 


This isn't what I pictured when I imagined learning to let go. This isn't how I envisioned sending Pip off to school. 


I thought I'd be dealing with worrying about her 24mth old size, or keeping a steady stock of diapers and wipes. I thought I'd be weary because of her little eye contact & how she has no concept of depth, taking stairs or hills outside with no fear. I thought I'd be petrified about food & Play-Doh & anything else with gluten getting into her Celiac little body. I thought I'd be anxious because while I understand her, most don't - she isn't verbal enough & while she has lots of signs, we somehow have ended making our own up. I thought I'd be over-thinking what it all meant for her big brother being in the same class & helping her on the shorter busI thought I'd be feeling emotional about others accepting her & demanding inclusion at all times. I thought I'd just be scared about letting her go.




Now I'm beyond. Now I have all of that plus Type-Bloody-1-Diabetes to deal with. 


A few weeks ago when Pip was diagnosed her blood sugar levels were so high, the monitor couldn't even read it. Now, however it's the opposite and she is dropping low all the time, which is terrifying. Hypoglycemia, also known as low blood sugar, is when blood sugar decreases to below normal levels. This may result in a variety of symptoms including clumsiness, trouble talking, confusion, loss of consciousness, seizures, or death. A feeling of hunger, sweating, shakiness, and weakness may also be present. Symptoms typically come on quickly.



Sucks right?



It's just not fair.





It's not fair we have to always be on alert now. It's not fair, we have to poke her fingers & manoeuvre test strips while she cries. It's not fair we haven't slept in days because the sample Dexcom we are using keeps alarming because she drops below what is acceptable. It's not fair we have to tell Noal he can't have juice boxes but have to keep pumping Pippy with them. It's not fair our boys have to hear how brave Pip is every time we give her a needle or she demands someone kisses her poked up fingers. It's not fair we have to trust others to be able to do blood sugar tests, make sure she eats a certain amount of carbs & judge how active she can be. It's not fair we have to join new Facebook groups & read how devastating this disease really is. It's not fair our Aunt Donna & my parents have to practice giving each other needles & write out emergency plans in case they are watching the kids. It's not fair my husband has to spend his weekends making gluten-free meals while counting out carbs, to only have Pip refuse to eat any of it. It's not fair I'm finding little specks of blood marks all over my newly-painted-white walls or Pip's clothes because despite putting pressure on her pokes, it still sometimes flows. It's not fair our lives are restricted in these small windows between insulin injections & meal times. It's not fair we're reading other parents haven't slept through the night in years, their child tried to commit suicide by over-dosing on insulin or how to sugar surf. It's not fair my son has been raised to look out for his sister & feels the need to let her sit on his lap the first day of school cause she has "dieabeeetes". It's not fair we have this huge, heavy cloud threaten to complicate the life of our daughter.


Type 1 Diabetes just isn't fair. It's hard & such a bloody roller coaster ride. And as much as I'm crying in my pantry, on high alert & feeling the weight of her entire life on my shoulders - I can feel a fight somewhere deep within me brewing. I know I need to fight for her, for our family & for others going through this.



So, bear with me friends. Don't call me amazing or a warrior momma, cause I'm not. I'm just trying to survive it all. I'm trying to survive the emotions of sending my little girl off to Kindergarten. I'm trying to survive the fear that at times seems to choke me. And I'm trying to rise up eventually, swinging for a cure, for help, for something to create change.




Calling on #PIPSARMY - I want nothing more than to spread our message...


I wonder if this is what it feels like when you're losing your mind. When you're about to break. I wonder if people sense it beforehand.


I wonder if it's crying at the silliest things, like leaving wet laundry in the washing machine & having to re-do that load. But understanding that really the tears are for the times you can't cry. 


  • The times when you have to be brave in front of your kids, giving your daughter needle after needle. 
  • When you have to set-your-alarm-even-though-you-haven't-slept-in-days because the doctor wants you to check blood sugars at 2am in case her's drop too low. 
  • When you walk aimlessly around the mall trying to find a cute little bag to fit insulin pens, blood sugar monitors & the dreaded Glucagon needle. 
  • When you give the super friendly salesclerk the wrong amount of money, not once, not twice, but three times because your mind is literally elsewhere. 
  • When it feels like everyone else is picking out backpacks & back-to-school stuff & you're questioning if you should even be sending her. 
  • When you have to pull her from daycare the last few weeks because she literally needs to physically be around you, so you can poke & prod her every few hours. 
  • When you suddenly have to pull out simple math, a subject you despise & are terrible at, to count carbs, calculate insulate dosages & bloody weigh food on a scale. 
  • When you now have to stress about seizures, the thought of other people giving your child needles and Hypoglycemia - When you realize it sucks the big one that you even have to know what Hypoglycemia is. 
  • When you feel so lonely because your world revolves around this new diagnosis, it's all you think about, all you worry about, all you want to master to make sure you are giving your child the very best care. 
  • When you find out there is a monitoring system that has alarms letting you know your child is in danger before they go unconscious, but then find out your insurance doesn't cover it & it costs more than your first car. 
  • When you have to record every little thing and then second guess, re-check & doubt yourself anyways.
  • When you're already so over-worked, over-tired & over-stimulated that your brain & body feel like they can't possible take on more or retain any other information.  
  • When it's hard to think about the future because the situation at present seems so very unsure. 


For all the times I can't cry, there is just as many times I have. I cried in the pantry. I cried alone in my van. I cried in the shower & yesterday I cried doing laundry. I've seriously cried more in the past week then any other week I can ever remember, not including the week Pip was born and Down syndrome smacked me in the face


Friends, I'm at that point, where I feel I could break. I'm struggling. It's been one week since Pip was diagnosed with Type 1 Diabetes, I've given over 30+ needles, I've poked her fingers & some already seem to be running out of blood. I've gone to meeting after meeting, changed upcoming school plans & been stretched in ways I would never dream, could be so painful.  


Point is, I'm reaching out for some love. I've shared our lives as honestly & as genuinely as I could the past few years. You've come along on our journey as we walked through so much - And I'm so thankful for all your prayers, thoughts and well wishes.  


But now I'm asking for more, I'm asking y'all for some grace & some support. Nothing would make me happier than seeing all the awareness we are trying so hard to bring, spread a little more. 


So, with the help of my team Fraser & Brittani from Hurricane & Harbour we've created a new Happy Soul Project t-shirt geared at #PIPSARMY - Wearing it helps "Fight the Good Fight" with us. 



And I have made a decision in regards to our #differentisbeautiful Calendars. While I seriously have loved nothing more, than getting the opportunity to feature amazing kids in it, due to circumstances, this year's calendar will just feature my sweet Pip. Bonus though, it can also be used as a teaching tool - Each month will feature fun, interesting facts about Down syndrome. I know firsthand, that talking in front of kids & classrooms is uber nerve-wracking. Seriously, I'd take a roomful of adults any day. When I have to give elementary school talks, I'm always lost as to what to say, how to keep it simple yet interesting. And I know there are so many parents out there, that would love to go into their child's class or school to give a small presentation about Down syndrome, but don't know what to say or how to do it. So this year's calendar is for you. It shows you exactly what I say & do when I go into schools to spread awareness about Down syndrome & our #differentisbeautiful message. 


So, by helping purchase one or both of these items you are in turn helping me. Y'all are allowing me room to breath. To focus in on what I have to do for my little girl & my family, while still feeling like I am doing something for Happy Soul Project...


So, please if you can, shop away:

To pre-order your 2017 Calendar click HERE
To pre-order your #PipsArmy "Fight the Good Fight" shirt click HERE
To pre-order your Calendar & shirt combo click HERE



Thank you friends. Seriously.



Imagine If You Can - #type1diabetes


Before 7:30am today I had to excuse myself to our pantry & have a little cry. I had to shake off the heavy feelings of anger & being overwhelmed before they literally choked me. I had to re-group, put on a smile & a "We-Can-Do-This attitude," before opening the door to face our situation:


My five year old bombarding me with questions; "Where's the needle?", "Can I try?", "Does it hurt her?","Why does Pippy get to have that and not me?".



My 10mth old who hasn't taken his eyes off me since I had to leave him the entire day yesterday, to take his big sister to the hospital. 




And then Pip...


My little girl who has already been through so God damn much. My little girl who bravely takes on life, like we all should. My little girl who now, has yet another life changing diagnosis. 


Yesterday, we went to her Eye Surgeon to discuss the possibilities of surgery for a permanent contact lens for her Congenital Cataracts. Inserting & removing a tiny minuscule contact in a squirmy-outrageously-upset little girl is starting to become impossible & we wanted to hear about other options. That appointment alone was physically and mentally exhausting. Imagine if you can, having to hold your child down in your lap while someone pokes around in their eyes. Imagine if you can, trying to distract them for hours upon hours because appointments are running behind. Imagine if you can, hearing your child potentially needs another surgery after y'all have been through more then a dozen already. 


Then try to imagine getting through all that but still needing to go to another appointment - Feeling for a week or two like something was up with your child. Just knowing that something was wrong. Imagine thinking because of their excessive drinking & peeing you just assumed something was off with their thyroid medicine. Imagine thinking your appointment would simply be a discussion to change dosages & maybe if they really had to, do some dreaded blood work.


Then imagine seeing the look your child's doctor has given you time and time again when bad news arises. Imagine finally breaking down and crying, simply not being able to keep it together. Imagine feeling like it's always one thing after the other. Imagine hearing your child has Down syndrome, then Congenital Cataracts, then Congenital Heart Defects, then Hypothyroidism, then needs tubes in their ears, then has major issues with their hips & knees. Top it all off with a life changing diagnosis like Celiac Disease & add in all the therapies, blood work, surgeries and appointments. 



Imagine then if you can, having the doctor put her arm around you & explain that your child now also has Type 1 Diabetes. Imagine losing it, dropping your head in defeat, feeling the weight of her words and simply groaning "FECK". Imagine trying to reign in your emotions but can't stop crying, your almost in hysterics because you feel this must be a joke, there is no way one child can have so many things. Imagine nurses who have known your child since she was born, coming over to hug you but with each embrace realizing how serious this must be. Imagine having your child rest their little head on your knee because they think you are upset only to then have to hold them down for more tests, more pokes, more blood work while they just cry & scream "momma" over and over. 




Imagine learning to work an insulin pen, how to poke your child's finger to do blood sugar tests & get up the nerve to actually give your child insulin shots. Imagine being deathly afraid of needles yourself, to the point where you pass out more times then not. 



Imagine having to know what to do if your child goes unconscious because their sugar levels are too low, or having to work out a diet that is Diabetes & Celiac compatible. 



Imagine being so scared of yet another thing that could potentially threaten to take your child away. 



Imagine thinking God or Fate or whomever is running this show, is outta their freaking mind to unfairly give your child yet something else to battle. Imagine feeling so utterly overwhelmed & never being able to catch your breath, finally getting use to one diagnosis only to receive another.  



Imagine after a day like that, rocking your little girl at bedtime, thinking she is asleep, so letting teardrops fall. Imagine her then reaching up and gently touching your cheek, wiping away your tears in her own way and snuggling in deeper as if to let you know it will all be okay.
 

Imagine if you can, all of this. And then you will be me. The momma in the pantry needing to cry because you just gave your daughter her first shot of insulin. 


Type 1 Diabetes you don't know what you're in for - Pip and I, are gonna kick your arse! Might take a few pantry-cries to get there, but we will.