Kryptonite

You were “Super Robot Guy” again this evening (you have been for days). I guess the transformation occurred while Sis and I were at Gymnastics. You’re the only Super hero I know that stops mid-mission to give kisses. 

Tonight’s been rough. I guess it started once you shed your “Super Robot Guy” attire. If I had super powers I’d protect you from what just happened. I’d fight that stupid Lex- Luther- pancreas of yours and show him whose boss. He’s done nothing but plot your demise since he quit functioning over a year ago.

Everyone is hard to love sometimes… even super heroes. I had to remind myself of this tonight when the incident occurred… that it’s not really you… you’re not really in control… it’s the diabetes… and I’m sorry I couldn’t stop it from happening. I’m sorry your bloodsugars were so high that it made you sick. I’m sorry that during hyperglycemic episodes you are altered from a strong, kind-hearted hero to an angry, wrathful fit-throwing villain.

I know you won’t remember screaming. You will forget yelling at Daddy telling him to “just leave” “just go away.” I won’t make you feel bad for hitting and swatting me… for shouting “NO MOMMY… NO TOUCH…NO TOUCH ME… NO KISS ME… NO TOUCH ME” and shattering my heart into a million pieces because other than giving you insulin it’s my only means of comforting you. “

When you wake up in a few hours- you’ll ask if you can be “Super Robot Guy” and you know of course, I’ll say yes. You’ll run around the house pretending to be “super strong” and “super tough.” We will play the game we play every single day - “Super Robot Guy” saves “Super Mommy”and when we do, I’ll try not to think about what happened… how I couldn’t save you from getting sick tonight… how I can’t always shield you from the highs and lows that seem to hit you from all angles outta nowhere and for no reason.

I’ll tie my cape a little tighter tomorrow… and maybe for a few hours I’ll pretend to fight criminals instead of diabetes. 

A letter to you, pancreas

Sometimes I wonder what you’ve been doing in there. I assume you’ve just been floating around- hanging out- laying low. I continually speculate whether or not you’re dead?

Are you alive?   …     just a little bit?

Are you still working…     just a little bit?

They told me you might… you might occasionally work on and off before completely kicking the bucket -but really, we have no way of knowing for sure.

Every now and then, I think you’re holding on… and I wish you’d just let go.

 

I’d never tell anyone but you… secretly (mainly at night when I lie in bed) I plan and carry out elaborate funeral processions and eulogies (in my head) just for you. I imagine you there… cloaked in black somehow listening and acknowledging what I have to say.

I mourn your loss and the suffering your death has caused - Saul and our family - but mainly I exult in your passing… because finally… with it… we can officially move on.

The battle for control is over. You can now rest in peace knowing that your job will be performed… (not as good as you could have done, had you not gotten sick) but nonetheless, we (and soon Saul)  will carry out your functions … every minute of every day for the rest of his life.

A year later, a year wiser, a year of humility and humbleness under my belt, I can sincerely say “I forgive you.  It wasn’t your fault.”  You held on as long as you could. You got us to 15 months and according to what they tell me you were probably sick and dying during your entire existence so to even make it that far without assistance is pretty amazing and a testament to your perseverance.

You are an underappreciated organ. Your loss does not reflect a daily physical reminder- like a limb or a digit. You, unlike other internal organs, do not get the credit you deserve for keeping a body alive- not like the heart, or brain... yet without you one cannot survive.

You, a tiny, non-functioning pancreas- have shaped my life, my career, my outlook and my family more than any other “thing” (living or non) in this world… and this factor isn’t necessarily bad.  In fact, I often think… that maybe- you will be (what partly) makes Saul a unique, strong, amazing kid who will grow up to be an extraordinary adult who accomplishes, and achieves incredible things.

Yet… your passing doesn’t mean that I still don’t get angry or frustrated, that I don’t ask questions or demand answers, that I don’t wish there was some way we could have brought you back to life… saved you… lengthened the state of your health... prevented your ultimate demise.

 

 

In all variations of your memorial service (and believe me… I’ve thought of lots) – I close in the exact same way… I picture myself (with our family) standing alongside thousands of dollars’ worth of medical equipment and supplies (CGMS, Insulin Pumps, Tubing, Needles) and a very expensive life-saving diabetic alert dog… and I chuckle… because this is what it will take… all this… and more to do the job of an organ we all take for granted… an organ that none of us think much about… until  one day it just up and quits working. 

 

oh yeah... that last post... that was nothing.

Just for fun... I'm gonna post these... and you can laugh (or cry) with me.

These are the "unopened" bills

$2,823.26 (if I added it right) lol.

I beg you... please read.

* Disclaimer- I am not a Dr. or a CDE... just a Type 1 mom with a Type 1 toddler.

When you have Type 1 you must constantly balance/manage/control your blood sugar levels. Your Endocrinologist gives you a "range" in which you must attempt to stay within. You (or someone) must take on this responsibility and perform the duties of a pancreas by controlling the amount of blood sugar in your body at all times. If you get out of range... blood sugars rise too high (hyperglycemia)- (consistently high blood sugars lead to long-term complications- damage to kidneys, eyes, heart, amputations) or if blood sugars drop too low (hypoglycemia) you will die.
 

Before I had a toddler with Type 1... and even in the hospital at diagnosis, I honestly thought... "ah... it's just diabetes." I know that so many of you out there think this as well... I'm ashamed to admit that I taught students (both sweet elementary babies and high school young adults) who were Type 1 and I never really gave much thought to how I would handle a hypoglycemic episode if it happened in class. I didn't think Type 1 was a big deal, because I didn’t know. Because I watched my Granddad live with Type 2 and thought that Type 1 and Type 2 were basically the same. Because I thought diabetes was about "sugar free foods" and "weight loss" about "finger sticks" and "insulin injections” not about having to save someone’s life in an emergency situation.


Saul has now had 3 “serious” hypoglycemic episodes. Because of the severity of the circumstances I feel the need to advocate and educate about hypoglycemia and what you do if you find yourself having to assist in a hypoglycemic episode.  


I can only speak for Saul- and how they have occurred thus far.


All of Saul’s “serious” hypos have taken place during “sleep.” 1- during his nap (you may recall that post- our first ambulance experience) and 2- during the wee hours of the morning (this post).

 
While Saul does wear a Continuous Glucose Monitor (a device with a cannula that stays in his skin and measures the amount of blood sugar in the interstitial fluid) the technology is not 100% accurate. The CGM is linked to his Insulin Pump (a device that is inserted – it has a steel needle which stays in place and provides both “long lasting insulin” (basal) as well as the insulin used to cover the carbohydrates he eats (bolus). The insulin pump must be operated by a human. Both the CGM and pump are just technological tools to help ease the difficulty in keeping a Type 1 “in range.” While I am appreciative and thankful for today’s medical advances and our family’s ability to acquire them…they are not fail proof… and they will not prevent death.

 
Managing Saul’s Type 1 is extremely difficult because of his age. His eating patterns, communication, growth, development, etc, etc, etc, only complicate controlling his blood sugar levels- therefore he is more prone to instability and at a greater risk for experiencing both hyper and hypoglycemia.

 
I will save hyperglycemia for a later post and focus efforts on hypos for this discussion.

 
There are numerous sites with hypoglycemic information and education out there. Here are two as starting points. 


Hypoglycemia Information
 
Hypoglycemia Information


The lowest hypo we have recorded for Saul has been a BG of 35.  Ironically he appeared “hypo-unaware” at the time. He was talking and playing and “acting” like normal Saul.  When he suddenly “fell down” I thought to myself “hmm… strange” and just happened to check him. His CGM read 110 at the time. We attempt to keep Saul between 100-200 (though he often runs higher). We “treat” at 70. So seeing a 110 on the MySentry (a large screen that shows CGM reading at all time) would “typically” be no cause for alarm.

 
During Saul’s severe hypo episodes (the 3 really bad ones) he exhibited the following symptoms.

• Heart palpitations/fast/pounding heart rate
• Sweating
• Acting aggressive (hitting, swatting)
• Convulsing
• Shaking/trembling
• Uncontrolled shouting/screaming  (it’s hard to describe this… but he did it both in terror “Stop” “Stop” and once it kind of went parallel with the aggression… or at least that’s how it seemed at the time)
• Dilated pupils
• Mental confusion/disoriented
• Seizures

 
Saul has never lost consciousness or gone into a coma.

 
We have not used glucagon (yet). Glucagon is a hormone secreted by the pancreas that raises blood glucose levels. Because a Type 1’s pancreas can no longer produce or secrete glucagon an injectable form is used in cases of severe hypoglycemia (when someone is unconscious). Glucagon should be carried at all times by Type 1 individuals. Saul’s glucagon is in a red case and must be mixed before injecting. We have been instructed by our Ped Endo to use glucagon if Saul has another terrible episode.

 
If you are ever with him (or any other Type 1) and you see hypoglycemic signs (again… Saul’s often hypo-unaware at this point so he cannot “tell you” how he feels you must watch for the symptoms and check his BG level)

 
You should follow these steps.

1.      Check BG with glucose meter.

2.      If 70 or below - treat the low with 15 grams of a fast acting carb (juice, skittles, cake gel, glucose gel or even table sugar if that’s all you’ve got).

3.      Wait 15 min and re-check BG level if still below 70, treat with another 15 carbs and re-check in 15 min.  

4.      If he is unable to swallow you can rub cake gel/glucose gel in his mouth

5.      If he’s unconscious you must administer glucagon.

Really- Saul’s hypos have been so bad we should have used glucagon… he choked and aspirated on juice during 2 of his hypos- which adds danger to an already dangerous situation. Also… skittles would be a really bad choice for treating a severe hypo.

 

We have been lucky so far to be able to get Saul out of his hypos fairly quickly. Obviously, preventing them is the ultimate goal- however, we’ve learned first- hand that even under the closest watch hypo’s can occur.

 

 I saw this on FB yesterday:

 "Type 1 diabetes is a continuous balancing act. Imagine trying to manually control your temperature or heart rate all day, every day. It must respond and change throughout the day, but not too high or too low or you die. That's exactly what people with Type 1 are doing with their blood sugar"

 

Type 1 is truly an on-going balancing act. It’s easy to forget that sometimes folks walking the tightrope might need a hand, or a net.

Oh 2013... I'm not going down without a fight.

As many of you know, 2012 was somewhat of a "difficult" year for the Grimes-Sebulsky family.

 

Not just my immediate family- but my extended family also faced a number of medical difficulties -including my Aunt's diagnosis and battle with breast cancer.

 

I had have high hopes for 2013... I'm working on my attitude and showing more gratitude. I'm trying to focus on positives and give back to all those who have given to me- because if 2012 taught me anything... it's that I was blessed to have received love, support, clothes, time, food, money, help and prayers. 2013 will be my year of reciprocation.

 

And... though the past two mornings have been extremely difficult for our family. I refuse to let diabetes take total control of our lives in 2013.

 

Saul has experienced two- severe hypoglycemic seizure-like episodes two mornings in a row.

 

I can only pray that none of my family or close friends ever witness what takes place- their hearts would break into a million pieces to see him suffering and so out of control. I feel for all the mothers and fathers of epileptic children who endure way more than what we have witnessed.

 

The first episode took place New Year’s Day. Jeff was asleep in our bedroom- EH and I asleep in the guest bedroom- Saul had gone to sleep in his bed. Jeff was the one who actually woke me up- yelling "Get in here! Come Quick!" Apparently he had heard Saul cry out... he looked in his bed, looked to see if he was with me, and was running through the house ... he found Saul lying face-down in the playroom- totally out of it.

 

Jeff and I both think lil Buddy was trying to treat his low by getting to his emergency juice on the back porch... but didn't make it. We didn’t use glucagon on him- got him up and able to drink juice- an hour later he was back to dino- dancing, car zooming and driving EH crazy.

 

This morning- (for me) - has been the worst episode to date. Jeff and I both rushed in to his bedroom to find him (either coming out of a little seizure like episode or getting ready to go into one). He was shaking uncontrollably, pupils fully dilated- he was out of it- but breathing, I held him while Jeff poured the juice down. Again- we didn't use glucagon... after 2 juices he stopped shaking and stopped crying out. After 1/4 cup of lucky charm marshmallows he was talking and laughing.

 

Because Jeff was here with me and we were dealing with it together... I think I was more upset and allowed myself to get more worked up and scared. I know this is ridiculous... but in the moment, when he has little to- no control over his body, and he sucks down a 15 carb juice in 15 seconds... I want to see immediate action... and well... it didn't happen this morning... and I just want control. I want to control him and control his body and his brain and well... I guess I should be more focused on my own actions and behaviors during a crisis situation.

 

I'm so curious how others handle seeing/witnessing/assisting hypo episodes. For the 3 (bad ones) he's had so far... I've held him and just repeated over and over "it's okay. it's okay. it's okay. it's okay."

The worst, and what sticks with me like some PTS experience is his crying/shouting/screaming out randomly "I'm SCARED!" and "STOP!" "STOP!" He's so terrified in the moment and it’s like he knows what’s happening, but doesn’t understand it- or how to stop it (not that he can) and it's so awful to watch him be frightened and not be able to help him.

 

But. You know what... He came out of it. He's okay. Daddy went to work. EH woke up. We've played dinos and cars and Let's go Fishin, and Hungry Hungry Hippos. We've watched Daniel Tiger and My Little Pony (yeah... I know... it's sad... he loves it). We've chased Daisy around the house, we've made 5 million messes, we've had a great day- despite diabetes trying to ruin it for us. We move on... We have fun. We live. That's how it's gonna be 2013... so get used to it.

Diabetes Jekyll and Hyde

If you don’t suffer from some kind of neurosis prior to a T-1 diagnosis you certainly will after.

“But he looks great”

“He doesn’t look sick”

“You’d never know anything was wrong with him”

“He must be doing a lot better”

I’ll admit, I was probably the most naïve of all of us when it came to understanding Saul’s diagnosis. I know I’ve already discussed it- but when we were told Saul was “diabetic” I was like “uh. okay,” and kinda shrugged my shoulders.

My initial gut reaction was “God, it’s not that bad.” I still remember thinking “well… no more sweets” and “so he has to take shots… I can give shots” and there are tons of people walking around who are diabetic… (I mean… granted they’re all OLD)… but really, “What’s the big deal?”

I know that so many of you out there think the same thing… and feel the same way… because seriously… sometimes those same thoughts still creep up.

.… and sometimes I hear/and am part of conversations that go like this…

(speaker): “you know (so and so) is diabetic and they’ve had it for years….  and they’ve never had any complications. They live like a normal life and are fine. I don’t know why you get so upset about Saul having diabetes.”

(speaker): “yeah, we have all kinds of diabetic kids at our school so it’s no big deal, they just go to the nurse a lot.”

(speaker): “they have a pump and you’d never know it. They never make a big deal about any of the stuff you ever talk about.”

(speaker): “why do you make such a big deal about diabetes… so he can’t have candy and sweets-it’s not like it’s the end of the world.”

(speaker): “yeah our cat is diabetic. We have to give him shots. How cool is that that- our cat and your kid.”

 

Do I want Saul to walk around sick all the time- teetering between ketoacidosis and hypoglycemia? Do I want him to live a life of surviving one coma to the next…  one seizure after another?…. Do I want to constantly blog from ambulances and hospital rooms… just so I can prove to myself and the world that living with Type 1 diabetes is in fact, a life-threatening, inescapable disease that we all must learn to manage and control?

Counting every carb in every bite of food that enters his mouth, calculating doses of insulin and giving injections, waking up 3 and 4 times in the middle of the night EVERY night to check blood sugar levels… these things are easy in comparison to attempting to explain Type 1 diabetes in a toddler and how it effects that individual and their loved ones.

Several events have transpired since that “Debbie- Downer- Walking- Dead” post.

I had a thoughtful (albeit unfinished) conversation with my guru Ashley. I pondered similar thoughts outlined by Type 1 blogger Kerri over at Six Until Me. I spent several days this week suffering through “sick day management” while I myself was sick. I’ve dealt with a few too many hypo episodes following this last change in Saul’s insulin regiment.  

 

I know Type 1 Diabetes doesn’t have to be a death sentence…

But it also doesn’t mean settling.  

 

November is Diabetes Awareness Month.  I feel compelled to advocate. Not just for Saul, but for everyone out there affected by this crazy disease – whether they look sick or not.

You can help Saul and others by educating yourself- something I wish I’d done before January 27^th. 

How to survive the Zombie Apocalypse... or... everyday life.

“You realize, Courtney, Saul will never survive the Zombie Apocalypse. There’s no way we can ever keep him alive.  I think he might make it for a few days… but that would be pushing it.”

About a month or so after Saul’s diagnosis – and several weeks into blogging, I asked Sebulsky to write a “guest post.” I thought it would be clever- and funny, if he wrote about one of his obsessions, and how his carefully thought out, detail- oriented plans, would work now that our lives included a chronically ill toddler- one that is reliant upon a synthetic medication- in order to stay alive.

I remember plain as day – the two of us- sitting there across from each other in our recliners- following that Sunday episode of Walking Dead- when we both came to the realization that “hypothetically speaking…. Saul would be a goner.”

It was early into his diagnosis. We were still on insulin injections. We were averaging 15-20 BG checks a day. I was still angry. I left the conversation… and my recliner. I went to the bathroom to cry.

I cried because I wouldn’t be able to save my son from becoming a zombie.

 

 

Saul has been doing really well lately.  Sure- we’ve had a few highs and lows (a donut AND a biscuit in ONE DAY… HELLO!…. 2 hours of running outside non-stop without pump suspension or temp basal… WHATDA YA EXPECT?).

 

It’s when things are somewhat normal, when levels are good, and we’re just chugging along… smiling and happy…. That’s when I say to myself… “Yeah… but he’ll never survive the Zombie Apocalypse.”

I know. I know. It’s stupid.  

#1. While Jeff likes to talk about it… a lot…. I don’t really believe it will happen… but then again you never know.

#2. What is up with my pessimism? Why can’t I just enjoy the moment for what it is- soak in the “good times” and not anticipate the “what if’s?.”

Maybe it’s because

We live in a culture of fear… fear which we cannot escape. TV shows, movies, news… we’re surrounded by it.  We’re overwhelmed by a constant reminder that at any moment our lives could be rocked by (fill in the blank) _____________________ (a natural disaster, a terrorist attack, an apocalypse, a crashing economy, a widespread plague).

 

There is no possible way I can prepare Saul for all the future obstacles he may face in life- with or without diabetes – and believe me… I’ve thought of nearly all of them.

-          Trapped in an elevator (okay… so actually trapped anywhere… for any amount of time… without insulin or treatments for lows)

-          Driving

-          Traveling- (to remote locations…it’s sometimes like being trapped)

-          Forgetting medical supplies

-          College (any and everything related to college…. I worry about college… yep… everything about college… let’s not talk about college… he’ll have an artificial pancreas by then… right? Right.)

I could go on and on and on… stupid, ridiculous “self-created” situations and events…. “he would die on a stranded island” (but wouldn’t most of us?) “he won’t be able to live in space” (but would he want to?)

on… and… on… and on….

Or, I could just stop living in fear.

I can teach him (and everyone around him) how to treat and manage his condition. I can teach him to advocate. I can teach him to problem-solve. I can teach him to prepare and plan and be responsible.

I could just stop fearing diabetes and the “what could happen” because of it.

 

It seems like the most logical action.

 

So why can’t I just do it? 

Oh you know... Just a Monday Ramble.

I’m not sure if it was Mabel’s passing, crappy weather, or just a stint of the “blah’s” whatever the case- last week can best be summed up as “ugh.” I ended Friday night in the fetal position on the recliner… okay okay… not really… but the thought was tempting.

I had zero energy. Zero creativity.  I had 2 nights of sleeping through Saul’s 3 a.m. BG checks. Friday morning Saul was in DKA. I don’t have it confirmed by a medical professional- but I also don’t need the confirmation because I saw it with my own eyes.

According to the MySentry he ran in the 400 for at least 6 hours… whatever the cause - (kinked tubing? old insulin?) who knows… I nearly passed out when his ketone check was 3.3.

He was a beast. Oh… friends… when he’s high… he’s such a beast. And now that he’s learning to verbalize (which is what I've been wanting all along) … I find dealing with his highs and lows way more emotional (for me) -  instead of just screaming or crying… He actually uses angry, hateful words…. On Friday morning as I was attempting to pump fluids and insulin in him - he was swatting at me screaming “NO MOMMY! NO MOMMY!”  

It was all I could do... to keep myself from envisioning a “future me” wrangling a “future” 17 year old man-boy to the ground and forcing him to comply to my treatment demands… “Oh you’re gonna get this insulin punk… whether you want it or not … cause… “ I’M YOUR MAMA… and you don’t MESS WITH YOUR MAMA!!!!”””

I know it’s difficult when you’re diabetic and you go through these hypo and hyper episodes… I’ve heard/read about and witnessed (not just with Solly) so many T1’s not being fully aware of the behaviors they are exhibiting during highs and lows…. It still doesn’t make it any easier for me. During 2 of Saul’s “hyper” episodes last week I bolused a correction of insulin gave him fluids and then left him lying by himself in his crib… because that’s what he was demanding. Every offer to hold him, carry him, cuddle him, move him to the couch, recliner to watch TV or sit quietly was met with “NOOOOO!!!!” “ME BED!!!!!!!!” “NO MOMMY!!! NO MOMMY!!!” So I would patiently wait outside his bedroom door for Bruce Banner to make his appearance again and for The Hulk to disappear so that we could once again resume our daily lives.

I won’t lie… I would much rather treat lows than highs…. Even though the lows are scarier… a bit more dangerous… def. more urgent… treating highs is just flat out exhausting.

Our house continues to seem quieter with Mabel’s absence. 

While I know Saul’s DAD is not pet and will not be a pet… it has given us all something to look forward to, think about and anticipate.  Sebulsky and I have been trying to out-do each other on the clever scale… thinking up names for our DAD. Most service dogs are given “special names” sometimes related to their line of work. A lot of the great ones have already been used…. “Siren” “Radar” “Meter” “BG” “Tracker.” Jeff came up with one that we both really loved… but Saul has trouble saying it… so we put it on a “maybe” list. However- out of the blue this afternoon - I thought up the bestest name ever. Sebulsky has since confirmed that I am currently in 1^st place and we do, indeed have a “winner.” Since the boys are sleeping I can’t get Saul to practice saying it… so we’ll have to wait and see how it comes out of little Sollys mouth first before declaring success. Meanwhile, Harper insists on calling the dog “Leslie.” I’m not sure where she heard that name- or why she likes it… but she’s renamed all her stuffed animals that, and the random 3 hour pet turtle we kept in the yard a few weeks ago, and she anticipates naming her “future bird” Leslie… All I can think about is that crazy white-haired guy who used to make those stupid movies with O.J. Simpson… wasn’t his name Leslie?

Oh… and back to Harper… Saul (much to Sebulsky’s dismay and disapproval) calls her “Sissy” actually it’s more like “Tissy” which I think is cute… Jeff… not so much so. During Saul’s last site change (after the 2^nd change out in 24 hours) he started crying and then demanding “NO TISSY DO IT” “TISSY DO IT” when it came to inserting the needle. I asked Harper if she wanted to try and she said… “ah… I better just hold his hand.” Which she did… and then wiped the little drops of blood from his old site with a tissue, then gave his 25 hugs and kisses, then sat with him on the couch and watched and episode of “Little Einstein’s” she’s seen 35 times. While she is a bit rotten, a little mischievous, a lot manipulative and way to smart for her own good…. Most of the time she’s a pretty good “Tissy.”

 

I’ve officially rambled way more than publically allowed.

So… here’s to a better week…

I hope we can all find more laughter than tears and more smiles than frowns.

 

 

 

T1P

“How many times were you up last night?

“4”

“Yeah… me too… no... wait…. 5… I forgot that 4:30 check… to make sure her high came down.”

 

“Have you ever treated with quick sticks?”

 

“Grape juice works better than orange?

 

“I pack carb counts on post it notes in my son’s lunchbox”

 

“Powerade Zero… lots and lots of Powerade Zero.”

 

“How do you get your kid to hold still for CGM insertions?”

 

“Give me your list of top 10 low carb snacks”

If you’re a parent of a T1 kid and you meet other parents of T1 kids… the above is typically types of conversations that are shared. It’s fairly fascinating (or maybe it’s just the inner sociologist in me that finds it fascinating) that over the course of 9 months I have connected with so many T1 parents and each and every time the “meeting” follows a similar pattern.

There’s a ritual that occurs upon encountering (whether virtually or in person) other T1 parents. First, comes a huge sigh of relief, a  “wow… someone else like me.” Suddenly things like socio-economic status, race, gender, geography and political affiliations (if only for a short- temporary time) no longer matter. Whatever differences might set your family apart – might limit your encounter in any other situation are gone- you have one shared common identity… you are members of a community… the diabetic community.

Once contact is made with other T1 parents the questions/stories start.

“Pump or injections?”

“Humalog or Novolog?”

“Diagnosis Date/Diagnosis story

“Medtronic CGM or Dexcom?”

“How long have you been off work to care for your kid?”

“How do you handle school?”

“What’s in your 504?”

“A1C comparisons”

And then.… there’s always the scary story, either one from personal experience or one they’ve heard about (seizures, DKA, amputations).

Next the conversations take a turn towards tips/advice/suggestions… The “have you tried…” “Use this app.”  “Check this site.”  

As the shared commiserating comes to an end and the verbal exchange reaches closure and interesting thing happens.  In my short 9 month experience thus far this has proven to be the case each and every time.

Inevitably someone ends the discussion with

“Diabetes sucks”

“No one understands… I didn’t understand…..”

“I never knew it would be this bad…”

Which is followed by…

“It gets easier… it’s still difficult…. but it gets easier”

And after this one of us will say….

“Caring for a chronically ill child is hard, so emotionally and mentally exhausting…. But Thank God my child has Diabetes and not something far worse.”

Or

“It was so difficult to listen to the Doctor diagnosis our kid with a lifelong chronic illness… but could you imagine if it had been cancer?”

 

 

 

 

Some day’s diabetes takes over our family… but some days it doesn’t. Some nights I get 4 hours of sleep…but some nights I get a little more. I thank God every single day for what I have. I thank God every single day that with modern medicine, technology and education Jeff and I are capable of learning how to care for, manage and treat an unpredictable –crazy- chronic illness in a typical- unpredictable- crazy 2 year old toddler. I thank God that I get to stick him, and poke him multiple times a day to keep him alive and well. There are so many other mothers and fathers who would trade places with me in a heartbeat…. who would give anything to only have to wake up 4-5 times at night, who would love to know that by sticking their child 15 times a day with a needle it would save their life… parents who can’t say “my son will have a relatively healthy- normal childhood.” 

While I sometimes seek solace in cries of frustration and anger- I remind myself of others… my heart aches for mothers grieving as they watch their toddlers die of life threatening diseases. T1 parents keep it all in perspective. I keep it all in perspective. We should all just try to keep things in perspective.

September 27, 2010

September 27, 2010

It’s 1:25 a.m. 4 hours before I have to get up and go to the hospital for a C-section. I’m absolutely terrified. I am a nervous wreck. I’m afraid I’m going to throw up or pass out on the operating table. I got sick last Thursday. I’ve been on a Z-pac since then. I got bronchitis and have had a terrible cold/headache/flu.

Dr. Onan is doing the surgery. I’m scared. She’s using steri-strips instead of glue- like Dr. Fuson used.

Fears-

I have so many fears. What if something bad happens- blood clot, pneumonia, unable to move, trouble breastfeeding.

Fears-

What if the baby is sick, deformed, what if something is wrong with him? What if something happens to him? What if he stops breathing?

Fears-

Post-partum depression, anxiety, what if we don’t bond?

Fears-

What if something happens to Harper on the way to the hospital?

 

I keep telling myself… you’ve waited for this, waited for him. You’re doing this for Harper. She needs a brother a baby brother. Harper needs a sibling.

Brooke is doing this 3 times. O’nan did this 3 times. You can do this. You did it once before.

This is something good. Something wonderful. You're having a baby.

Enjoy this moment- enjoy him. This will be the last time you’re pregnant. This is your last birth. This is the last baby you will breastfeed.

You have so many people praying for you. Praying for this baby. Saul. Prayed for. He’s not here and he’s already getting prayers.

I wish I could quit work to raise kids.

I wish I could take more time off to be with this baby.

Go to sleep. Don’t be afraid. It will be okay. You will be okay. He will be okay.

*I copied this exactly as I wrote it 2 years ago in a journal the night before my scheduled C-section. All the fears and anxieties were worth it. What an amazing 2 year's it's been. Happy Birthday little buddy. Mommy loves you.