Wednesday, May 27, 2015

What Can I Do to Help? Support?

Q:  My good friend asked, "What can I do to help you?  Support you?  Make this journey more bearable?  How can I share your burden?"

A:  I must admit, this is the HARDEST question to answer.  I'm not sure I honestly know HOW to answer this question.  I'm not sure I know how others CAN help me; share this burden.  Sometimes it feels like a VERY lonely road to travel.  The road of diabetes.  But... some simple things that come to mind...


Let me cry, vent, get angry, talk, cry some more.

Don't try to tell me 'it's ok', 'it'll get better, easier', 'it could be worse.'  Those sentiments - although I know they come from a good place, only make me feel bad about my grief. They make me feel I'm wrong for feeling what I feel.  Instead, acknowledge my state.  Let me express my sadness, my anger. Whatever stage in which I happen to be.

If you think you are capable, up to it, be willing to LEARN.  Learn what type 1 diabetes really is.  Learn to help care for our girls so if - no when - we need respite, we have a pool of people to call on.

Pray for me.  Often.  Ask for God's strength and wisdom as we traverse these waters.  Ask for God's hand of protection to be upon our girls.  Ask for courage to face the hard days head on.

Be willing to acknowledge that my grief is real.

Remind me of the enemies attacks.  Help me be strong.  To fight back.  To not blame myself.  To remember that their blood sugar numbers are not a reflection of my parenting, but a reflection of this disease.  Remind me of how unpredictable this disease is and no matter how diligent I am in monitoring their glucose levels, that they may still be WAY out of whack with nothing I could do to change them.

Call me.  Allow me to just talk.  Sometimes I will want to ONLY talk about diabetes.  Let me.  Other times I may not want to talk about IT at all.  Help me find other things to talk about.  Distract me.  I know that's asking a lot.  How will you know where I am?  I'm not sure I'll know myself.  Be willing to test the waters.

Sometimes I may need to be alone.  I may 'skip' events or activities so that I can have some 'quiet time' alone with my thoughts and feelings.  Time to pray and talk to God.  Time to 'not think' about all that caring for two T1D children entails.  Don't be overly alarmed when this happens, but at the same time, be watchful that I don't slip into depression and hide indefinitely.  Yes, a tall order, I know.

Please help me monitor our girls.  When we are in the public arena and you are around our children, let me know if they 'seem off'.  If they aren't acting themselves.  If they seem emotional and droopy, combative and rude, overly quiet or moody - any of these extremes could be indicative of swings in their blood sugars. We need to check and potentially treat them to correct the levels.

In time, I know my grief will be less raw, less extreme. When that time comes, help me rejoice over the girls' successes and victories.  Help me remember they are still my precious little girls with the potential to be and do whatever God intends for them.  Help me encourage them.  Help me accept encouragement myself.

In a nutshell?  Be the friend you've always been.

Tuesday, May 12, 2015

Why So Touchy?

Q:  Why are you so touchy?

A:  In short?  Basically because I'm grieving.  I'm grieving a loss, a deep felt loss for all that I've discussed up till now.  I'm grieving the 'what if's' this disease offers.  I'm grieving the loss of innocence and freedom diabetes stole from our girls, our family.  I'm grieving the pain I have to inflict upon my girls DAILY just to keep them healthy, alive.  I'm grieving the fact others don't understand the gravity, the seriousness of this disease.

In addition, I'm simply overwhelmed.  Grief is tough to bear.  It seems even harder when that grief is confounded by needing to step up to the plate and fight a disease that wants to destroy our little girls. If I don't fight, I lose them.  Even if I do fight, I could STILL lose them.  But.... I know I have to persevere.

I'm also tired.  Exhausted some days.  Not only emotionally and mentally but physically.  Something that's lost that seems a bit trite on the outside is sleep.  When you have a child or two or more with type 1 diabetes, sleep is no longer just 'restorative rest'. It's a cause for alarm, for fear, for uncertainty.  You see, while sleeping, the child won't FEEL the low coming on.  We won't SEE the impacts of such a low.  Death is VERY possible.  Due to these 'possibilities' I choose to check their blood sugar in the middle of the night.  Sometimes more than once.  You see, double digit numbers bring fear; triple digits bring stress.  As another mom of a T1D put it, "Numbers aren't just for sesame street to us; for families living with type 1 diabetes, numbers rule. the. day."  So, when I snap?  Know I may just be sleep deprived.

I also struggle with being patient.  Patient with well meaning individuals who make inconsiderate comments due to lack of knowledge, information.  I don't want to lose friendships, to hurt relationships, but.... it's hard.  These are my babies.  Mama bear will roar.

You see, right now?  My very sanity is on the brink. There is so much to consider each day, each meal, each moment.

My nerves are frayed at times.

Sometimes I just want to cry.  Oftentimes I do just cry.  Often I feel I can't control when I'll cry, snap, recoil.  It. Just. Happens.

My brain is on overload.  So much to know.  So much for which to keep track.  Two logs of blood sugar.  Carb counts.  Insulin ratios.  The right insulin pens.  Then there's the general information about diabetes. What it is. What is isn't.  What CAN happen as a result of this diagnosis.  Finding support - from others walking this path. Others who understand the raw, unfettered emotions.  It's a lot.

So, I may be a bit touchy, grumpy, not quite myself.

Q:  At least it's not cancer, right?

A:  Of course I'm happy that our girls do NOT have cancer.  I cannot even imagine how difficult it must be to go through such a diagnosis with a child.  However, you have to understand that such a statement does not - in anyway - make me feel better.  Why?  This disease, diabetes?  It too can have severe consequences.

I understand and empathize with the fact that a child given the diagnosis of cancer has an increased chance of death.  I acknowledge that the treatment for such a diagnosis is traumatic at best.  Some have terminal, inoperable cancer and death is inevitable.  Again, I cannot fathom the heartache those families feel.  However, most don't understand, don't know that death is a reality we face daily.

Many a child has had life altering consequences from this disease.  Extreme high blood sugars in the short term can leave a child with temporary or permanent brain damage.  Swing to the other extreme of a severe low and death is knocking on the door.  I've already heard of far too many children taken too early to this monster.

Add to that the on-going, life sentence of type 1 diabetes.  Unless a cure is discovered in my girls' lifetime they will NEVER get a break from the day to day difficulties of this disease.  Never a 'time out' from treatment.  Such a lapse would lead to their demise.  It's. Not. An. Option.

So, although the simple answer to this question is 'yeah, I am glad it's not cancer', the more complex answer is much deeper.  It's like comparing apples and oranges.  They are two VERY different beasts.

Just as I would not want the diagnosis of cancer, I also did NOT want the diagnosis we did get of diabetes.

Right now there's no cure.

There's no permanent fix.

It's a day in, day out struggle.

Some days are easier than others.  Some are down right hard, unbearable.  We're fortunate that we haven't had those unbearable days yet.  But... we know the possibility exists.

The grief, the loss..... is real.

I hope I've helped you understand, to some minor degree, just how devastating this disease is to any family.  To our family.

I hope you can now resonate with the words "loss" and "grief" as they relate to this unwelcome adventure in which we find ourselves.

Friday, May 8, 2015

How Are the Other Kids Holding Up?

Q:  Just recently a friend asked "How are the other kids holding up?"

A:  The simplified answer is, "Very well."  However, I'm not naive enough to think this hasn't impacted them.  It has.

Their lives were also turned topsy turvy when we received these two diagnoses so close together.

I'm certain that all 4 of the other kids are worried for their little sisters, but I'd be willing to bet they are also somewhat concerned for themselves.

Why? The risk is there. The risk they too could develop type 1 diabetes.

I've now read and heard of families with 3 or more siblings -- all in one family -- being diagnosed with type 1 diabetes.

So... I KNOW that has to be in the back of their minds day in and day out.

Plus, let's face it, it's hard to see your little sisters go through something like this.

They get to see the girls wince as I inject the insulin into their little bodies.

They get to watch Selah recoil and tense up as I try to prick her finger for yet another blood sugar check.

They get to see the bruises left behind from insulin shots.  Yep, bruises.  They are tiny little girls and I'm apparently not the best 'shot giver'.  I try my best to be very gentle, but sometimes I hit a more sensitive spot; sometimes they flinch which causes the injection to be more painful, forceful if you will.

All of the kids have been wonderful at supporting, encouraging and comforting Selah and Trinity.  From distracting them during a shot, to hugging them after a shot, to monitoring them for a high or low episode.

The older kids are GREAT at comforting me.  What?  Yep, They. Comfort. Me.

How crazy is that?  I'm supposed to be the one comforting them.  But... right now?  They see how difficult this time has been for me. They are picking up the slack and trying to push and pull me through this.

Little Charity is probably the most profoundly impacted.  She's smack dab in the middle age wise of the two newly diagnosed T1D girls.

In some ways, I'm sure she feels 'left out'.

The other two have gotten new necklaces and bracelets - granted they are medical alert bracelets and necklaces, but to a 7 year old?  It's still pretty jewelry.  They also received teddy bears, new bags to hold all their supplies, a backpack filled with 'goodies' like a new water bottle and books etc from the JDRF.  I know it can't be easy for her to see her sisters get all this 'fun stuff' while she gets nothing.  At the same time, I imagine it's hard to watch them go through all they go through day in, day out.

Talk about conflicted feelings.

Jealousy and sympathy?

Wow - try to reconcile THOSE!

But.... with all the kids we try to be available to talk with them.  To listen to them.  To hug and hold them.  We are encouraging them to be involved. To ask questions. To help 'look out' for their sisters.

But... we are also trying to listen to them about their lives and feelings too.  Not JUST about diabetes and their sisters' tumultuous diagnoses.  We are encouraging them to live their lives just as they had been. Granted, we acknowledge so much has changed, yet, we are all still 'The Williams Family.'

THAT hasn't changed.

So, in a nutshell, they are all doing well --- considering.

We were blessed that neither of the girls needed to be hospitalized.  We caught both early on in the disease process.  We will monitor the other kids and have testing done to check for antibodies periodically.

We are doing all we can to keep life as 'normal' as possible, while still doing all we need to care for Trinity and Selah the best we can.  The older kids just completed training with a nurse to learn to give shots and care for the girls.  We have resources available if the kids need more 'formal' help in coping with this situation.

For now?  We seem to be holding our own -- as a family.

Thursday, May 7, 2015

Aren't They Just Like Other Kids Still?

Q:  Well, they're really no different than other kids, right?

A:  Yes, and no.  Sure, they can still do things other kids do; they'll still act like other kids act, but...... innocence has been lost.

Can you imagine how heavy it must feel to have to be able to track your own health - at the ages of 6 and 9?  To know that a severe low could result in not only feeling 'yucky' but seizures, unconsciousness, even death?  To know it's imperative that you try to 'identify' what those lows and even highs feel like; so you can tell mom and dad; so that life saving measures can be taken?  Our girls have had to grow up.... fast.  Overnight really.  I am a big fan of teaching responsibility at a young age. But... this disease?  It's not like taking responsibility for a pet, or of chores mom and dad have given you.  It's responsibility for ones own life.  That's huge.

No longer can play be carefree.  Before heading out to run, ride their bike, jump on the trampoline with their siblings and friends, they have to check their blood sugar. If it's low?  Snack and wait.  If it's high?  Push fluids, possibly administer insulin, and monitor often.  Then... while playing.... they have to stop, come in for a blood sugar check. Again, if low, snack and wait.  Then once play time is over?  More checking.  Follow that with checking a couple hours AFTER playtime has finished.  Blood sugars can take huge dips and soars following excessive exertion.  Even if 'just' from play.  It's exhausting.  Worrisome.

They can no longer just 'run with abandonment' as kids like to do.  They. are. tethered.

On the topic of 'being tethered'.  As the girls move forward we hope to have them using insulin pumps and continuous glucose monitors.  Great tools.  Potentially life saving measures.  A 'bionic pancreas' of sorts.  However, as another D-mom put it, our kids sometimes feel like 'cyborgs' because of these life saving devices.  Do you think they 'feel' like 'every other kid' when they have to be connected to various devices just to monitor their blood sugars and keep insulin coursing through their bodies?

Almost synonymous with loss of innocence is the loss of independence.  These lows and highs somewhat dictate their lives.  What, when, and how they do things will all be tainted by diabetes.

Add to that decision making they have to make. Hard and basic decisions.  Something as trivial as pastries being available at church between services results in a difficult decision now.  Our girls have to make a choice.  Is the 'treat' worth another shot?  Do they simply do without and feel left out?  So many things that were once simple, a part of childhood, have been robbed from them.  It's like a black cloud lurking over them, always, wherever they go, whatever they do.

Q:  Isn't their future fine, now that you know and can treat them?

A:  Again, not a black and white answer.  Yes, hopefully their future is 'just as bright' as the next kid.  They CAN do whatever they want and put their minds to in terms of their life.  Yet, this disease does have a grave impact on their future.

They may experience rejection from taking part in certain activities, sports, etc.  If the individual running the activity doesn't understand T1D, they may not allow them to take part.  If they are in a 'brittle' phase with their diabetes, we may, as a family, choose not to take the added risk of some activities.

Plus the bullying that could transpire because they are 'different'. They have to check their blood sugar (multiple times a day); then administer insulin every time they eat.  Not all kids are kind when it comes to such 'oddities' when they aren't familiar with these measures.  Friendships can be altered, shattered, or not formed all because of T1D.

Not knowing what their blood sugar levels will do may rob them of some of their confidence.  Learning to drive can be frightening. What if they experience a severe low, while driving alone?  It's daunting.  What other 'normal childhood milestones' might be impacted due to these uncontrollable variables?

What about the fear of other auto immune diseases?  Yep, kids with T1D are, unfortunately, at a greater risk of developing another disease of the immune system. Doesn't seem fair does it?  It can impact their future.

Then there's the thought of marriage.  Even though none of us know what the future holds, most of us have dreams of our future spouse.  For our girls?  Will 'the one' be willing to take on this disease for better or for worse?  For life?  Not everyone is willing or capable of such a commitment.  The future is so uncertain now for our little girls.  Assume they do find Mr. Perfect who is willing to live with T1D for the rest of his life. Then they have the decision, the worry, the uncertainty surrounding having children of their own.  The potential risks during pregnancy. The possibility of their own child/ren developing T1D as well.  Their future is impacted.

What about career options?  Most job opportunities should be open for anyone with T1D.  However, some dreams for certain individuals have been lost.  Military? NOPE, not much of a chance.  Pilot?  Not gonna happen.  Too much of a risk.  Remember those highs and lows that can't be completely controlled?  That's a gamble not worth taking in these professions.  I'm sure there are others that will be 'out of reach' now that our girls have the diagnosis of type 1 diabetes.  It's hard.  It can be sad.  It causes grief.

Innocence and the typical carefree childhood were lost the minute this diagnosis was announced.

Dreams and aspirations for the future were squelched or at the very least altered for some.


Deep, real, losses.

Friday, May 1, 2015

Thankful for Technology

Since the girl's diagnoses, Techno and I have waffled back and forth with 'middle of the night' testing.

I want to test EVERY night; multiple times a night. Why? Probably because of fear and my need of control.

Techno, on the other hand, feels it's not necessary unless we've seen some 'wacky' numbers throughout the day -- especially before bedtime.

He knows I need a full nights sleep to function well the next day.  I know that my mama's heart needs to know I'm doing all I can to help protect our girls.


With the Continuous Glucose Monitors now available to both girls, those middle of the night 'checks' are less necessary as the CGM will actually alert us to these lows and highs we fear.

YEAH for technology.

The sensors they wear on their person submits a signal to the iPods we have in their room which then sends a signal to our iPhones alerting us in the middle of the night if numbers raise or lower outside of their 'acceptable' ranges.

This week was our first 'scare' and thankfully we DID in fact have a CGM on Selah.

Her blood sugars were on the high end after dinner and most of the night.  She sat in the mid 200's throughout the evening and into the early morning hours.  Her alarm continually went off to alert us that she was above her 'suggested range'.  After being awakened half a dozen times or more for elevated blood sugar numbers, I. Didn't. Hear. the low blood sugar alarm at 4 am.

Fortunately, Techno did.

At 4:15 am, I was aroused from my slumber by my phone chiming at me.  In a state of grogginess, I picked it up and stared at the screen.


Wait?  52?  That's LOW!

What a wake up call THAT was.

Within moments, I was fully awake and slipping on my lounge pants and heading out the door.

I noticed the lights in the living room were on and heard little voices.

I had barely noticed that Techno was NOT in bed as I leapt awake.

He had already gotten Selah up (which woke the other 2 littles) and had checked her blood sugar and given her juice.  They were now just waiting the 15 minutes to 're-test' and determine the next steps.

Her actual blood sugar had been 60.

Better than 52, but still too low for comfort.  Especially at 4 am.

The scary part of this for me?  She continued to be high-ish all through the night.  We most likely would NOT have checked her as the fear of a low was minimal.  Plus, if I HAD decided to do a middle of the night check (and we hadn't had the CGM on her) I would have checked at 2 am and gone back to sleep.  Her blood sugar didn't fall until later.  Gasp!

Had we NOT had the CGM on her; I would not have planned to get up at the right time to check her.  Our morning could have been MUCH MUCH more grim.

If blogs were audible you'd hear my sigh of relief right now.


Since this first 'middle-of-the-night-low', we've experienced 3 other nights like this with both girls.  Especially Trinity - having at least 2 lows a night needing to be treated.

I'm so very thankful for this technology.  It's not a cure.  It's not full proof.  But... it is a tool.  It does give us information.  It does alert us to 'warnings'.  It's a way for us to keep better tabs on their glucose levels.  It's a means for us to take even better care of our precious little girls.

I'm not always a tech fan.  I get extremely frustrated when technology doesn't work as it's intended.  But..... I'm a HUGE fan of THIS technology and all it can do to protect our girls.

Dexcom with Share.... YOU ROCK!!!

We are ever so grateful we have access to this technology.  To this life saving information that kept our girls from going dangerously low...

in.... their...... sleep.