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.




6 comments:

  1. Anonymous6.9.16

    You have done really well letting her go off to school .I know if it had been me I am not sure I could have .I homeschool my little one but sometimes wish I was brave enough to let her go to school . Its very difficult not to worry but try and just have a wee cup of tea and rest .Hugs from the uk

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  2. Hang in there, Momma. As they say, things will get worse before it gets a whole lot better. Praying for your little girl. She is such a fighter and I really do admire her spirit.

    Hugs and much love from the other side of the world. 😊

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  3. TinaGreco6.9.16

    Oh my God! Yes...it FUCKING SUCKS!!!!!! 💜💙💚💜💙💚💜💙💚
    Love and peace to you and your family during this challenge. Your strength will get you through, even though you and I both wish it didn't have to! Best of luck with this next transition phase in your lives, Tara.

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  4. Jesus Tara, I'm so angry with you! Everyone can say it will get better with time, and it will, but in the meantime It just hurts and I'm sorry. You must see the good you are doing, cry it out girl but you will get through it day by day xxoo

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  5. It all sucks and is not fair to your family.
    Pip is going to be fine and as unfair as the situation might be she's got an amazing big brother who's always going to look out for her. I always read so many comments about what a good job you're doing with Pip(and you're doing absolutely effing amazing) but then I see pictures like this one of Noal and Pippy at school and think to myself you're doing a beyond amazing job with Noal too.

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  6. Hang in there. And it's OK to fall apart and cry, in the pantry. I always tell my husband to please just give me 1 day to self loathe and have a pity party and stomp my feet and cry and curse; just one day. Then the next day I get up and exactly what you said, there is a fight brewing beneath, and it gets bigger and then you move forward and take it head on. Every time Kai or Peter(my 2 oldest 9&7 have DS) get a new diagnosis added to the 2 page printed out list I want to scream. I worry constantly but am thankful their school has an amazing staff and call me if a hair seems to blowing the wrong way with one of them. I cant say it will get easier, because I have learned that we never ever know. Always waiting for the other shoe to drop is so very tiring and I do my best to put it aside, but the one time I did put it away because we felt safe I was walloped upside my head. Kai got stevenson johnson syndrome/toxic epidermal necrolysis, which has nothing to do with DS, but only happens in 1 in 1 million people **claps and takes a bow* A month long hospital stay, losing 80% of his skin as it blistered and sloughed off his body while he was in an induced coma...all because of an antibiotic for an ear infection, which is our nemesis. I just didnt realize an ear infection could be deadly.
    Everything has felt so unpredictable since then, and I am sure that is how you are feeling. I do hope you find a comfortable place with all this. My best piece of advice is to talk talk talk with the teachers and aides. Be a presence at the school, a positive one, but a presence. This is our 4th year in with Peter in 3rd and Kai is in 1st and so is my daughter, but Ive made sure to be a positive advocate and educate and the teachers and whole school has taken well to it. I would trust my boys with their lives with those teachers and probably most of the staff in the elementary school. But I got in there and made myself known and have slowly been making small changes every year in the school. Hang in there and hugs.

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