fighting to live – literally…

 

Last night is a night I won’t forget for a while..

A very typical Sunday night for us. A busy weekend of basketball tournaments followed by 2.5 hrs of skills clinic in the evening.

It was a GREAT weekend of basketball – we were all pretty happy and maybe a little bit too cocky – telling D to “take that!

WOOHOO – Way to go Teams!

 

 

Yeah – guess D didn’t like that very much… 😔

6 games of basketball in 2 days is a LOT of hard work and exercise for anyone – let alone trying to manage Type 1 Diabetes and the effect it has on Eden’s body.

 

But we do it – and we do it often

Because she LOVES basketball and T1D shouldn’t stop her from doing ANYTHING…

 

4 of the games were on Saturday – 3 were back to back – with little to zero break in between games – I brought extra sugar thinking her blood sugar would run low – but of course adrenaline took care of that and she ran high all afternoon..

Totally expecting a crash on Saturday night – I changed basal rates so she would get less insulin before going to bed and she ate a late night snack with ZERO insulin to help keep her blood sugar up and stable..

Well, the crash never happened on Saturday night as expected??? 

In fact, her blood sugar remained high and never dropped below 200 – waking up high on Sunday too..

I was too over cautious every time I checked on her overnight to give her extra insulin because I was SURE the crash was coming..

but it didn’t….

Until LAST night…

Her Dex transmitter came out of her arm right before we were leaving the house for her evening basketball clinic. I INSISTED that we re-insert before we left because it takes 2 full hours to “warm up” and calibrate – so we are completely blind to what her blood sugars are doing for 2 hours (except by doing a finger prick)

testing during clinic and she was great – perfectly in range..

After practice – as usual – her blood sugar was high due to adrenaline

Eden was going to eat something when she got home – so gave herself insulin and was going to come home, eat and not dose for the food she ate.

 

great plan – but it didn’t really work out..

 

 

You can see where she tested and calibrated (2 red dots) in the car on the way home from basketball clinic..

She came down slowly and then I could tell she was starting to tank at 9.15pm right before she went to bed..

She had a juice – I turned down the basal rates to limit how much insulin she would get for the next 2 hours and waited..

That wait literally turned into all night long as her blood sugar refused to rise

 

Every time I tried to wake her to eat or drink something she became more and more combative. 😢

 

She was flailing arms, screaming at me and telling me to go away, clenching her mouth shut and down right REFUSING to eat or drink.. She was not herself – she was not fully awake, had her eyes closed the entire time and has never behaved this way and to this extent before

It went on for hours…… and hours and hours…

She would take a little juice here and little glucose gel there but it was NOT easy – she wanted NOTHING to do with it..

Her blood sugar would start to rise and then slam right back down again..

 

 

I was absolutely beside myself.. scared, mad, exhausted and about ready to scream for D-dad to forcibly hold her down so we could get sugar into her mouth..

I had the Glucagon film reel playing in my head – ready to use it – thinking there might be no other option

At about 1.30am it looked like I could finally go to bed and close my eyes – I set my alarm for 2 hours later and woke up to her being in the RED zone AGAIN…

 

OMG… 

We have had MANY very stubborn low blood sugars lately and I have NO IDEA why… nothing has changed and I have lowered her overnight insulin rates.

This is part of Type 1 Diabetes that people DO NOT SEE… DO NOT UNDERSTAND..

It is so scary and dangerous.. I was literally fighting with Eden to keep her alive last night..

She slept though every single beeping alarm of her Dexcom to warn her – if she had started to crash after I had gone to sleep – I wouldn’t have checked on her for 2 hours… that could have been 2 hours TOO LATE…

Eden woke up tired, with her blood sugar in range and with absolutely NO RECOLLECTION of what had transpired and went to school just like it was any other day.. looking and acting perfectly healthy and normal

The Type 1 Diabetic life is beyond normal – but it is OUR normal

Technology Dance…

Technology is our best friend – until it isn’t…

We are SO reliant on technology to keep Eden alive, safe and healthy that when it isn’t functioning it just adds stress.

People have so many electronic gadgets in their regular day to day lives – but add in Type 1 Diabetes and we have a LOT more gadgets that do very important things!

here is the BASIC rundown of what we rely on daily

• Insulin Pump – yeah – quite obviously the top of the list – this baby literally keeps Eden ALIVE

• Blood Glucose Meter – wirelessly transmits her blood sugar value to her pump

• Dexcom CGM (continuous glucose monitor) – this is a 2 part piece of equipment.
  • sensor – inserted into her arm (or other body part) that transmits blood sugar reading to receiver
  • receiver – that displays the data in number and graph form

• Nightscout Rig – this is Eden’s setup for enabling D-dad and I to remotely view the Dexcom data
  • consists of a phone and a Dexcom receiver – hooked together with a cable – that must be within 20-30 feet of Eden’s body (the sensor in her body) to be able to transmit data

• Pebble Smartwatch – Eden’s Nightscout Rig – transmits data to the “cloud” – which we pull down with our personal cell phones and then use bluetooth technology to pair with the Pebble so we can then see the data

 

amazed yet?

As I mentioned – very basic rundown on the Nightscout process which was a complicated multi-step process to set up…

These gadgets take batteries and specific cables, need to be charged regularly and Dexcom needs to be calibrated with a blood sugar reading every 12 hours to help maintain accuracy.

We have gotten into somewhat of a routine where we have 2 Rig phones so that we can have one charging and one in use at all times and 2 Dexcom receivers so we can have one attached to the Rig and one for Eden to use and refer to throughout the day.

We try to calibrate in the morning before school and at night before bed – but you aren’t supposed to calibrate unless your blood sugar is stable (not rising or falling) – which is not always easy

We have a backup of batteries and cables up the wazoo – some gadgets warn when the battery is getting low – some things just stop working (blood glucose meter)

For the Nightscout Rig to transmit we also have to rely on phone/wifi/internet connection..

The past 3 days this carefully orchestrated technology “dance” has failed us – a number of things have gone wrong and it takes time to figure it out – time when Eden is at school that is hard for her to give…. 

 

Tuesday – she was high after PE but her blood sugar check and Dex were not accurate and in sync. Eden’s blood sugar was reading high pretty much ALL day – I lost data connection and stopped receiving data just after lunch and she was 320..  next thing I know she is texting me right before track practice – an hour later and she was only 62.. not good.. and I couldn’t see what was happening..

what does that mean?

D-mom drives to the school, sits in the car and observes track practice from a distance – her coach is nervous about the whole D thing and takes it very seriously (YAY coach!) but he thinks I am monitoring remotely and will alert him before anything becomes an issue. I can’t tell if there is going to be an issue – don’t want to freak him out by sending him a text message so I sit there – just in case.

 

 

Wednesday – Rig stopped transmitting data 1 hour into school day and we did NOT have data for well over 6 hours. Do I need to see Eden’s blood sugar every minute of every day? NO – but it is VERY helpful and in the instance of the afternoon before would have given a warning that she was dropping too quickly. This day she was high, high, high… She had a track meet straight after school and I was very concerned as to whether or not she should even run – whether I needed to replace her pump site – whether she had ketones or if I needed to come give her a shot…

 

 

 

 

Thursday – today… 

in the middle of PE class I receive a text that the Dex sensor came out of her arm… DANG IT… so we will have no data AT ALL – AGAIN – all day today..

 

 

they say things happen in 3’s, right?

 

so grateful for technology and the devices we have – but not too happy with it right now!

the good, the bad and the ugly..

 

In the D world – it pretty much all boils down to blood sugar numbers

 

good = in range 

bad = low

ugly = way high 

 

On the Dex graph

 

white – in range – you are AWESOME !

yellow – HIGH – warning, warning – need insulin!

red – LOW – danger! need sugar NOW!

 

we have certainly had our fair share of ALL of the above lately

I have tweaked and tweaked insulin settings and gotten them to be pretty darn good at certain times of the day.

 

problem is – that was for a “normal” day

but what the heck is normal anyway? in this case  – a non-school, spring break kinda day.

 

In the D world – even if you kept the exact same schedule and ate the exact same foods every day for a week you would get different results..

now that we are in the second week of our back to school routine it appears my tweaking may have gone a little too far

 

 

– or she exerted herself more than usual in PE today

– or had a smaller mid-morning snack

– or the 6 basketball games and 2.5hrs of clinic over the weekend finally caught up with her

– or the sky is blue 😉

 

oh – but on the plus side – I was a big girl D-mom and resisted the GIANT torturous urge to call the school as I watched her redline it during the school day.. letting her take control and do her thing.

 

IT WAS HARD

she survived.

I survived.

but I’m ready for a glass of wine…

Oh boy… what a way to start the day

 

This is what you get when you “rage” bolus in the wee hours of the morning… a guilt producing, scary low blood sugar reading that you, the parent caused. 😢

 

 

Multiple, multiple times every single day we make medical decisions that affect Eden’s life.

We do the very best we can to act like her non-functioning pancreas but we make mistakes, we are not perfect and Type 1 Diabetes is unpredictable and stupid.

 

the backstory…

Last night Eden had basketball practice – as typical LATELY – her blood sugar starts off fine and then adrenaline kicks in and she skyrockets mid practice. I have experimented with giving her extra insulin before practice to counterbalance the high that is coming – but that in itself is very risky. Exercise typically causes a DROP in blood sugar, so additional insulin upfront could have BAD consequences. Adrenaline highs usually correct themselves over a period of hours after her body recovers and her blood sugar levels out.

I say USUALLY…

Because over the past few months, everything that we had become accustomed to her body doing has changed. Her body is changing and so are her insulin needs and how it reacts.

 

We change Eden’s insulin pump site every 2-3 days.

We fill the reservoir in the pump that holds the insulin with 2-3 days worth of insulin. (mind you she doesn’t use the same amount daily) The insulin only stays stable for that length of time due to body and outside temperatures and we also need to rotate the location of the cannula under her skin. The longer the cannula stays under the skin in one place, the poorer the adsorption, the greater risk for bacteria entering her body and the development of scar tissue. The longer the insulin stays in the reservoir, the more it breaks down and is less effective in controlling her blood sugars.

Eden does not particularly like having her site changed. Honestly, I really can’t blame her – its a big needle that we have to insert into her body and I hate having to do it – but it is a necessary evil.

I mark on my calendar the 2 day mark and check in with her on how much insulin she has remaining so that she doesn’t run out, consider how stable her numbers are and go from there. Yesterday was day 3 and her site needed to be changed but she still had plenty of insulin left to get through the night after practice so I opted to put it off and do it in the morning – putting off inflicting pain on my child and wanting to use every precious drop of the liquid gold she had remaining in her pump.

 

8.40pm :

Her blood sugar after practice was high – not unusual – and not as high as it has been getting

 

 

A fairly typical reading of late – she gave herself a correction dose of insulin to bring it down and I watched Dex closely over the next couple of hours.

10.30pm:

Bedtime for me and Dex showed she had come down consistently – not too quickly – and leveled off in the 200’s.. I was totally happy with that knowing that she would continue to drop on her own.

12.00am:

What I did NOT expect was at her next check that her Dexcom reading would be WAY off  – showing a reading in the mid 200’s when a finger prick was actually 395 😒

YIKES…

SO – I give her another correction dose of insulin using her pump and stumble back to bed.

Restless – I continue to check Dex consistently over the next few hours – waiting for it to catch up and display an accurate blood sugar number. Dex still showing in the 200’s..

3.20am:

Get up again and do another finger prick… 302

UGH… another correction with her pump.

 

Back to bed – I fall asleep for 30 mins or so and it dawns on me… HER PUMP SITE IS NOT WORKING.

Fed up and exhausted – I get BACK OUT OF BED – head to the supply cupboard – get a syringe – go to the fridge and get the insulin. I draw out insulin for the correction I am convinced she just didn’t receive and an extra unit to make up for the basal insulin she wasn’t going to be getting..

I take the insulin and I inject it into her arm and head back to bed.

2 hours later and I am awoken by D-dad getting up and ready for work. I look at my wrist and it says Eden’s blood sugar is 85 with an arrow down… I thought to myself – well, it probably isn’t accurate – it has been off all night – fighting the need to get up.

5.45am:

Get out of bed AGAIN to test Eden.

Finger prick 85…

SPOT ON – COMPLETELY ACCURATE and MATCHING DEX

SAY WHAT ?!

Well, I guess my day has now officially started.. 85 is on the low end and thanks to Dex it shows, still dropping. Given the fact it is Spring Break and she will be in bed for a few more hours – too low for my liking..  Within minutes, my wrist is vibrating and she drops to 74 – head to her room – wake her up to eat some sugar. I watch and wait – she drops into the 60’s – head back to her room – wake her again and make her eat some more..

and that, my friends is how we ended up at a lovely blood sugar reading of 52 this morning.

Fed up with a blood sugar that would not come down, frustrated with an inaccurate reading from Dex that we rely heavily on and mad at myself that I didn’t just change her site before bed and just wanting to SLEEP.

I, her mother, gave her a dose of insulin that caused a dangerous low blood sugar..

To be fair – we will never actually know whether it was the exercise finally catching up with Eden or the dose of insulin I gave her that caused it. Her Dex could have been accurate the entire time and she could have had residue on her fingers causing an inaccurate finger prick. It could have been a combination of all of those things and/or her site could have been functioning just fine and we were only dealing with a stubborn high??

no way to know whether it was my fault or not… But I am her mother and I am in charge of keeping her ALIVE during the overnight hours.. the guilty feelings will ALWAYS creep in – even though we do the very best we can with what we have…

 

So – not only did I save my child’s life today – I could easily have taken it away..

It could have been MUCH worse and those thoughts will plague me today… a hard thing to swallow for sure but I cannot dwell on it too long.. 

It is our life – walking that tightrope every.single.day. and some days we fall off..

But we bounce back and do it all over again because we have no other choice.

THAT is the Type 1 Diabetes life.. 

 

WE NEED A CURE…

Proof in pictures…

 

As you all know we have certainly had our T1D challenges of late..

 

It felt like we were starting to get a handle on things and then Spring Break happened.. and a complete change in routine

I have been VERY HAPPY with the lazy mornings and actually being able to catch up on some much needed sleep.

Eden has taken full advantage of this too – and quite honestly would probably sleep all day if I gave her the chance.

 

Spring Break has enabled me to see a number of things clearly D wise..

1. We have pretty much got her nighttime basal rates set perfectly.
2. Due to her sleeping in – I can see that we have her mid/late morning basal rates set perfectly.
3. Eating at different times of day and more “treats” than usual has created an unknown for whether we have carb ratios set correctly and some low lows and high highs
4. We still have some work to do for late afternoon and evening spikes that have now appeared
5. Eden has done amazingly well with her D care whilst at home and with friendly reminders
6. WE HAVE MADE AMAZING PROGRESS

 

Just a few short weeks ago we were looking at this… (we want to be in the GREEN)

 

 

Average blood sugar for the week was …. 209

crazy high spikes and randomness (Dex doesn’t give number above 400 – we had PLENTY of them)

 

 

One week later …

 

 

Average blood sugar for the week was …. 191

 

 

And the past 7 days …

 

 

Eden’s average blood sugar was 174

 

The progress we have made in a few short weeks has been AMAZING..

We have PROOF in pictures that our hard work is paying off and I couldn’t be happier right now 😃

 

Spring Break came at the perfect time and has definitely agreed with Eden – we still have a week left of break to go to do some more tweaking and then we will see how long it all lasts…

 

 

Until then – totally doing a well deserved happy dance …

My human guinea pig …

We had our Endo (specialist doctor) appointment on Tuesday – a day that we really do not look forward to.

I went into the appointment with a list of questions, comments and concerns – MANY more than usual – and the fear that I would let my frayed emotions get the better of me.

We have had SO MANY issues with T1D lately and it has been ridiculously, frustratingly, HARD. I hate the feeling of trying to explain how/why Eden’s blood sugars have been so high and whacked out. Thankfully her Dr. is amazing, kind and incredibly supportive and encouraging.

 

The thing is, I’m kind of off the hook.

I can only do so much with her D care and management and SHE needs to do the rest. 

BUT, I’m kind of also ON the hook too because I’m her parent and it’s my job to ensure she is safe and healthy. 

 

Eden is not at the point of being able to completely self-manage. Among other things, I keep track of site change days, insulin levels in her pump, CGM sensor changes and inserting the devices into her body. Eden does not make any changes to the insulin dosages that are programmed into her pump either.

I do that. 

The only way to do that is to track trends and consistently ask questions of Eden to determine whether changes might even need to be made. Increasing the amount of insulin Eden gets is not a thing to mess around with – I take it very seriously and do my darndest to fine tune things to the best of my ability.

Eden gets a steady stream of insulin (called basal insulin) 24hours a day – as well as needing insulin for meals or high blood sugar (those rates vary too). Her basal insulin requirements vary dramatically depending upon the time of day. Currently she has NINE basal rate settings programmed into her pump that I tweak up/down and change the time around. An hour here or there makes a difference – and getting those settings just right is a near impossible feat lately.

 

The only true way to test whether Eden is getting the correct amount of basal insulin is to do basal rate testing – which requires her NOT to eat or exercise – so we can see if her blood sugar rates remain steady over whatever period of time we are analyzing. For the past 4 days we have not allowed Eden to have a snack in the morning at school so I can get a better idea of what is happening with her blood sugars. Thank goodness I can monitor from afar with the use of Dex and Nightscout – or she would be needing to test her blood sugar every 30-60 minutes.

The gradual changes I made over the last few weeks have not been working. The doctor helped with some suggestions which I applied but they still weren’t making ANY difference. This morning, being completely fed up, I decided to go super aggressive on the changes and told Eden ONE more day of no snack..

Well – that didn’t work..

Eden’s blood sugar went low at the tail end of PE today (hopefully not from my changes) so she needed to treat herself with some fast acting sugar. PE is another story all together – never the same level of exercise 2 days in a row – so very hard to manage.

 

I watched from a distance as her blood sugar slowly crept from low, to in-range and then higher and higher and higher, into crazy high ONCE AGAIN.

 

I now have no idea whether she over treated the low and that contributed to the rising blood sugar levels or my aggressive basal rate changes were NO WHERE near aggressive enough??

The reality – my poor kid is really nothing short of my human guinea pig.

Every day we are taking our best guess with the information we have and giving her medication that can kill her based on those guesses…

no snack again tomorrow for my girl as we try to figure out the mystery and exactly WHICH basal rate I need to change by a little or a lot.. pretty sure we need an overhaul for other settings too – but basal rates is the place to start.

Type 1 Diabetes seriously has a mind of it’s own – it makes absolutely NO SENSE some days and changes the rules whenever the heck it wants to. There is ALWAYS something to keep us on our toes – D never rests and lately seems to be getting the last laugh.

 

WE NEED A CURE

Clear as mud…

today we got some clarity..

not a lot – but a little.. 

enough to make some conclusions on changes that we need to make and enough to make me feel guilty.

the past few weeks have been tough..

Blood sugars have been out of control – a lot of it self inflicted because Eden had been forgetting to give herself insulin at school when she ate. A few missed doses here and there I can handle – but when it is becoming an almost every day occurrence things had to change…

For the past 4 days – Eden has been required to go to the nurses office to check her blood sugar and dose her insulin for lunch when she is at school.

this was a very hard decision to come to – one that Eden did NOT like.

Eden has been considered “self-managed” at middle school since she began last August, meaning that she is legally able to manage her own diabetes care whilst at school.

This means she is solely responsible for testing her blood sugar when required – after PE – before lunch – before after school sports activities, etc. She is required to tell a teacher if her blood sugar is low who can then notify the nurse. She is also responsible for administering her own “medication” i.e.: her insulin, as needed when she eats anything.

Eden and I communicate throughout the day and I can obviously see what is happening with her blood sugars thanks to Nightscout and Dexcom. There have been multiple occasions where I have needed to contact the office or a teacher because her blood sugar was dropping dangerously low or vice versa skyhigh. It came to a point where I had to just watch her blood sugar skyrocket and not make the call.. I couldn’t be calling several times a day and pulling her out of class. She needed to step up.

Unfortunately, even with all the tools available and the trust we put in her to manage her own health care – she hit a wall…

It is exhausting – time consuming and there are days when you just don’t want to have to deal with it.

I get it – completely.

Those days were becoming more and more so we needed to step in to make changes and ensure that her health came first and that it didn’t start to seriously impact her learning abilities or her well being.

The past couple of weeks have been taxing ..

I feel like I have been constantly on Eden… constantly…

When I would see her blood sugar skyrocketing during the day I would be MAD.. Mad because it indicated that she wasn’t giving herself insulin. I don’t monitor exactly when she eats day in and day out. She should be able to eat a snack if she is hungry – eat if someone has brought something to share – choose her own snacks and eat like a pre-teen kid without her mother asking questions..

Because she was not giving herself insulin on a regular basis and we caught her out a few times not even testing her blood sugar we had to make the choice to restrict her management and self control for a couple of weeks to get her back on track.

Today – Eden has done everything as we had planned. We have been in contact and I can tell by her blood sugars that she has given insulin when she says she has.

and her blood sugars still skyrocketed

STILL SKYROCKETED…

at around the same time of the day

 

That is the part that makes me feel incredibly guilty.

 

SO MANY FACTORS affect blood sugar but we couldn’t see or anticipate any other factors because she wasn’t doing what needed to be done in the first place. We always wait for a pattern before we make any insulin dosage changes..

there WAS A PATTERN… and all along I thought the pattern was her fault

Her lapses made it impossible to see anything else.

We try to fine tune everything down to the hour of the day – every few hours she requires a different basal insulin dosage and daylight savings certainly did not make things easier for us this week.

I owe Eden an apology.

Yes – she needed to be observed at school to get back on track..

But now it is clear or at least as clear as mud as to the next step we need to take.  There are changes that need to be made to her basal and/or meal time insulin dosages at certain times of day that were totally, completely and utterly out of her control..

lesson learned. 

Type 1 Diabetes is stupid and no matter what you do day in and day out – it does not like to be controlled (like a teenager!) and will always do what it wants.

She should…

 

The last few weeks have been kinda crazy around here…

Basketball season is well and truly in full swing – meaning that pretty much every single afternoon / evening / weekend is filled with basketball of some sort.. ❤️🏀

What does that mean..?

Well in Type 1 Diabetes land it means unpredictable and increasingly HARD to manage blood sugars.

more worry and less sleep for us D-parents

 

You should all know by now that LOW blood sugars are and can be extremely dangerous if not treated promptly.

Some days all it takes is a little boost of sugar to raise Eden’s blood sugar to a safe level. Other days it takes a LOT and I mean a LOT of sugar to raise her blood sugar and keep it there without falling again.

Exercise and Type 1 Diabetes is a weird beast.

 

A lot of exercise causes a cumulative and delayed low reaction.. We don’t know WHEN this might happen although through experience we have gained a fair bit of knowledge on how Eden’s body USUALLY reacts.

 

We had quite a few challenges to face this past weekend.

Eden had SEVEN basketball games within 2 days  – FIVE games in one day

 

That is a LOT of exercise and it requires us all to be on our toes, thinking about D the entire time..

Something we DID NOT expect was for Eden’s blood sugar to crash seemingly for NO REASON – just before her FIRST game.

It started gradually – then she started dropping at a faster and faster rate during pre-game warm ups – with double arrows down showing on our wrists thanks to Dexcom and Nightscout. (something we would never have known without Dex)

We yelled out for her to EAT – she still had a LOT of active insulin working in her body from the breakfast she ate just before we left the house. She didn’t test her blood sugar – just grabbed a handful of fruit pieces, gave us a thumbs up and ran back onto the court.

Her blood sugar continued to drop over the next 10 minutes – we yell for her to EAT again

At this point – D-dad and I think that she may have wrapped the sensor on her arm too tightly – compression of the Dexcom sensor can cause FALSE low readings.. It made sense – she started dropping right after she wrapped her arm for the game.

 

We relax a little bit and signal for her to test her blood sugar before she takes the court.

What she tells us sends D-dad and I into complete PANIC MODE.

Her blood sugar was 60

 

LOW – DANGEROUSLY LOW – to be exercising – and that low after already consuming a lot of sugar ?!?!

Even LOWER than what we were seeing on our wrists – HOLY CRAP – I check her pump and see she still has TOO MUCH insulin active to consider it safe to take the court.

 

Before we can even react – she is on the court ready for tip off. The game starts.

D-dad and I are a barrel of nerves – watching her – watching our wrists

 

Thankfully we have a time out within the first few minutes – we signal for her to EAT MORE

Back to the game – she air balls 3 shots – NOT usual for her – she is NOT playing like herself and D-dad and I are worried..

REALLY WORRIED. 

D-dad starts to get up from the bleachers to have coach pull her from the game. Something we have never done – but were worried enough to contemplate doing it.

We decide to hold off as she continues to give us the thumbs up that she is OK. When blood sugars are moving so quickly – it can take Dex up to 20 minutes to catch up to real time blood sugar levels and display accurate numbers. She has had a sh*tload of fast acting carbs so I give her the benefit of the doubt and hope she is in tune with her body.

End of the 1st Quarter – she tests her blood sugar and it is headed UP – Phew – finally headed in the right direction. Back to the court and Eden playing much more like herself. That helps us to relax and enjoy the remainder of the game and even teach some of the parents on the bench a little bit about Type 1 Diabetes.

The best comment – “Eden has Diabetes?” – “We had no idea.”

Eden has gained a lot of respect over the years for her basketball skills. From parents, coaches and players alike. It has taken some time – but she has earned it.

• A GIRL – playing on the top boys team in her age group.
• A GIRL – who happens to be the leading scorer for her team for the last 2 tournaments.
• A GIRL – whose nickname is “The Dagger” because she nails 3-point shots in critical moments of the game.
• A GIRL – who referees come up to after the game asking her name
• A GIRL – who happens to have Type 1 Diabetes

 

We have to plan and account for T1D in every decision we make – especially related to basketball.

Sometimes plans just don’t work out and you have to go with the flow – hoping that T1D cooperates so that the show can go on.

Playing SO MANY basketball games this past weekend was a HUGE undertaking and challenge. 

Much more than anyone could possibly understand unless they lived the T1D life.

 

Not only does Eden battle the physical tiredness of being so active – but we deal with the emotional exhaustion from constantly being “on” and trying to be one step ahead of D.

I don’t necessarily want all of Eden’s team mates or the parents to know she has T1D – but seriously – it just makes her all that more badass on the basketball court because not only does she play her heart out each and every game – she literally juggles her life.

Type 1 Diabetes may constantly have us on the edge of our seats and dealing with it become our normal, but every time I pause and think about it. REALLY think about what T1D life entails and the struggles it poses – I think that the world should know.

 

I wonder what they would all think if they knew just what it takes to keep her alive every.single.day.?

Would she get a whole new level of respect?

She should… 

She is an amazing kid – basketball player – fighter – T1D warrior  – with so much strength and resilience

Because T1D life is not easy – Basketball with T1D is not easy – Eden just makes it look easy 

I guess we will see …

So all of you who read regularly know that basketball is a huge part of our lives.

Eden lives and breathes basketball 🏀❤️

 

Over the years she has had many different coaches – this always makes it difficult for me as to whether or not to even bring up the big “D” word. Some of them have been basically kids themselves – and I didn’t feel the need to put that on their shoulders – especially since I am always there.

 

They would see her test her blood sugar – some would question Eden – some wouldn’t.

I just learned fairly recently that Eden told one of them a few years ago that she had diabetes – but not the “fat kind”. 

out of the mouths of babes – hey – at least she told him 😳

 

anyway – the coach of her current team has known Eden for many years. He has worked on and off with her but not necessarily on a consistent basis. He knows she has Type 1 Diabetes – he recently joined and supported us when we were doing the JDRF Walk to Cure Diabetes in October. He actually missed a tournament game to support our family.. 💙

 

Last night was the first time he actually noticed that Eden has not “right”. She had missed practice on Monday night – something we NEVER do. If there is practice – we are pretty much ALWAYS there, and then some.. Missing practice was D related and he knew that so maybe it was on his radar? He was actually concerned enough to ask Eden if she was OK and to call out to me during practice to make sure she was alright.

 

She was – but she wasn’t.

Her blood sugar was high – very high.

 

• she was moving in slow motion
• she had a dazed look on her face
• she was not reacting to the ball or following instructions well
• she totally airballed a 3 pointer

 

After practice he called me – he reached out and I was so thankful.

He wanted to know and understand more so he could help.

To know that there will be another set of eyes watching out – helping Eden to put her health first is going to be a wonderful thing.

 

There is SO much to know and learn – what to say when you have to start at the beginning? 

 

this was my attempt

 

 

Type 1 Diabetes doesn’t and shouldn’t limit Eden – but it DOES very clearly affect her ability to perform at the best of her ability when her blood sugars are out of whack. Unfortunately that is more often than not lately. Even more unfortunately is the fact that Eden THINKS she is totally fine when she clearly is NOT.

 

I’m hoping the fact coach noticed – means that she will WANT to take more care and responsibility.

Diabetes or not – poor performace will see more bench time and less court time. 💔🏀

you would think that would be a pretty big motivator..

 

I guess we will see

 

 

 

Blessing and a Curse

 

I know I’ve been less than great about writing lately…

It’s not that I’m not actually WRITING… It’s that I’m not actually PUBLISHING what I am writing…

 

I have found myself stuck between a rock and a hard place D wise

 

Although it is FABULOUS using all of this new fangled technology to help manage and monitor Eden’s Type 1 Diabetes – it is also slowly driving me CRAZY..

 

It is an amazing blessing – but I am finding

– quite possibly, also a curse.

 

D now has the ability to infiltrate every single minute of my day.. just by glancing down at my wrist – it’s there in my thoughts – in the forefront of my mind.

wondering, questioning, thinking, worrying – and I can’t get it out…

 

We are living such a fine, delicate balance right now between letting Eden manage things herself and her needing us to help her. Of course she doesn’t necessarily THINK she needs us to help her.. 

I have been writing (venting) for myself lately and not sharing my feelings with the world.

 

Although, that is no way to help and support others in the D community that are going through the same issues – I’m finding that it isn’t going to be helpful to our family to “air our dirty laundry” and all the specifics in an open forum.

 

I’m not perfect

Eden is not perfect

D-dad is not perfect

Type 1 Diabetes certainly isn’t perfect

 

We are all going to make mistakes – drop the ball – not do what we “should” do.

 

But I still find myself seeing the numbers and getting beyond frustrated – sometimes with Eden – sometimes with D and today – with myself. It is very difficult for me to not get all tensed up and feel like I am beating my head against a brick wall.

 

I have the sinking feeling

that we are getting absolutely nowhere –

taking 1 step forward and 3 steps back.

 

• I’m frustrated that I am LETTING D take up so much of my time and energy, but I can’t seem to help it.
• I’m frustrated that some of the first things out of my mouth when I see Eden are D related.
• I’m frustrated that we have all this technology but the issues are still here

 

technology and insulin are NOT A CURE – they are bandaids

bandaids covering wounds 

not necessarily physical wounds – although Eden has plenty of those 

They are bandaids to my wounds of fear, anguish and heartache. 

Wounds that get ripped open again and again on a daily basis while riding this stupid D roller coaster.

 

I’m pretty sure that all parents at some point in time wonder if they are screwing up – doing things right to give their kids the best possible start in life. When your child has an incurable disease (which can kill them) that you are trying to teach them to manage – those feelings are amplified.

 

• I just want the best for Eden
• I just want the best for her long term future
• I just want the best for her immediate – in the moment – teen demands
• I just want her to care, respect and understand enough about her disease to WANT to do her best to manage it. 

 

Although I feel the immense need to know she is OK – know that she is doing what needs doing and not in any danger. It is also painfully obvious that I really have absolutely no control – that Eden is going to do what she does until she is ready to do more. The more I push – the more she is going to pull away.

I need to let go – I need to find something else to fill my every thought because I am driving myself crazy and doing neither of us any good.

I’m not quite sure how to do that… but I need to figure it out fast