Ripples of Joy

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The joy is palpable in my house.  The last few months have been some of the hardest we've gone through since the boys' diagnosis.  Bow tie boy's news yesterday has lifted our spirits.

The post I did about the hits keep coming was about my Mom's boyfriend, he had just been diagnosed with colorectal cancer and it didn't look good.  A week ago they had a consult after more tests with a different doctor.  This doc believes he can get all the cancer in surgery without my Mom's boyfriend needing chemotherapy, radiation, or a bag.  More Hope.

These last two pieces of good news has lifted quite a bit of the weight we've been feeling.  That's not to say everything is rose colored and peachy keen, but better is better and it leads to pure joy.  And it ripples out like a pebble tossed in water.  Tears of joy are so much sweeter.

Hope feels better

Hope springs eternal.  As I was publishing my Goodbye post for our Bow tie boy, we received some hopeful news.  He is awake.  The docs have sedated him but he was tracking with his eyes.   I'm a realist and know that this doesn't mean he'll be "okay", but it is the best news possible.  Hope.  Hope feels better.

I told the boys.  My teen, who is home from school sick and headed to the doctor, smiled.  He smiled.

Hope is easier to hold.

No More Words

And the hits keep coming....

.....and I have no words.  I will write when I can and when I find the words.  Mental disease, diabetes, cancer...they all suck.  That is all for now.

Bow ties are Cool

I've been crying my eyes out.  It's been a rough month.  The boys have been sick quite a bit since the end of January and that has definitely taken it's toll on me, just last week Drago was battling a stomach bug.  Then my sis-in-law was in the ICU and hospital for a week for DKA.  Then a boy in the D.O.C. was fighting for his life after going into DKA from the stomach bug (same age as SugarBear and diagnosed for 7years I think) and lost his fight.  And then the straw that broke the camels back, that made this heartbreak so unbearable, that opened the waterworks full force.  I found out yesterday the boy we took home from school all last year and the year before, who transferred to a different school this year, attempted suicide by hanging.  He's in a coma and his future is uncertain.  What is certain is he will not be the boy we knew;  the boy who wore bow ties because they are cool, who could solve a Rubix cube, who loved doing origami, who was thinking about going into criminal investigation, who always had an easy smile and a kind word is changed.  He attempted to kill himself three weeks ago.  I found out yesterday when I went to get my hair done by his Mom.  I could tell something was going on and when I asked her she said "You don't want to know, it will ruin your day."

Parenting is so hard.  I struggle to find the words.  We all have this journey and some have the roughest roads through the darkest forests.  I'm sitting in the dark, weeping.  I weep for the young man who felt there was no other answer.  I weep for the Mom who can only take one moment, one step at a time because she feels so lost.  I weep for the Grandma in whose eyes I saw the heartbreak.  I weep for my boys who struggle to fight to live knowing someone who gave up.  I weep for my husband who interacted with this boy like a son.  I weep because I love them all and my heart doesn't know what else to do.

Rays of Light

We've been lost in the woods all week, stumbling in the dark on roots and stones, the occasional Rays of light filtering through the leaves allowing us to scramble towards a path.

Both boys were diagnosed with strep on Tuesday, as was I and my hubby.  We've all been sick since Monday.  It has been an extremely challenging week.  High blood sugars, extreme lows, trace to moderate ketones, hyper vigilance all while feeling awful.  But we have one of those Rays of light in the Dexcoms, which allowed us the ability to stay on top of everything.  I truly believe these devices have kept us out of the hospital.  To us they are necessary for life.

The irony of being sick this past week is that the week before it was such a contrast.  Sugar Bear turned 11 on the 17th and on the 18th my in-laws came in from the east coast for a week long visit.  The 17th was beautiful and peaceful and everything my little homebody likes.  On the 21st, hubby and I got to go out to dinner thanks to my in-laws.  We so rarely get to spend time just the two of us.  Before leaving I went over the safe sitter sheet with my mother-in-law and gave a crash course on using glucagon.  With the Dexcom on both boys it makes these excursions less worrisome.  We can still check on them with the share ap.  It eases our anxiety.  On Friday my stepson showed up for a visit.  The boys were thrilled. On Saturday, the 23rd, we had Sugar Bear's birthday party at a laser tag place.  Of the nine children (three ours) and nine adults, six are Type 1 (five children and one adult).  Two of the T1 kids were buddies of Sugar Bear's from Diabetes camp.  It was a wonderful party.  Of course seeing three exact kits on the table really hit me.  And we had some lows and highs that happened while there and lots of carb counting and different ways of dosing were noticed by my in-laws, but overall it was a great party.  Immediately after the party our family with my stepson and my in-laws headed to a friend's house for some family portraits to be taken.  While there, Drago did go low.  And then after portraits, hubby and I got ready to go out to my work party.  We were leaving the boys for a little over five hours, the longest we've been out besides while the boys were at camp.  Of course as we were on our way out the door Sugar Bear's Dex was beeping that he was low. We left anyway knowing my in-laws got this. The work party was awesome and my in-laws did just fine with the boys.  Of course Sugar Bear started going high before we got back and he was asleep and my mother-in-law did seem a bit stressed.  Handling all the alarms and fluctuating blood sugars in both kids isn't easy.  They all did great.

My stepson left Sunday afternoon.
Sunday after the party was "normal" for us but I noticed numbers on Sugar Bear seemed to be going up and then Monday both were sick.  My in-laws left early Monday morning.  And we were back to just the four of us struggling in our forest with not much light but at least our cups weren't empty.

Easier?

The first diaversary was challenging, especially looking at the things I posted leading up to Sugar Bear's diagnosis.  This year, year 2, totally different but still challenging.

I haven't written anything in months, not because I don't want to but keeping two children alive during the holidays isn't as straightforward as the rest of the year.  Halloween, Thanksgiving, Christmas are all "food" celebrations.  Has this journey gotten "easier"?  I get asked that periodically.  Not really, is how I want to honestly answer.  Have you ever been told that if you put a live frog in a pot of boiling water they immediately jump out but if you put him in a cold pot of water and slowly bring it to a boil he'll stay until he dies? Yup, I think this pot of slightly warm water is soooo relaxing.

I received a Dr. Who weeping angel t-shirt for Christmas.  It got me thinking.  Type 1 is a lot like a weeping angel, as long as you don't blink it doesn't seem scary.  I know that's a bit of a stretch but it's how my brain works.  So I wore that tee under my sweater on the second diavresary of Sugar Bear's diagnosis.  It made sense to me.

So here I sit, two years later, in my quiet before work contemplating where we've come on our journey.  I'm thankful for insulin.  I can't imagine how awful life was for a family before that discovery when two years would have been the max that someone would suffer with this disease.  And the treatment before insulin was starvation and whiskey (to take the pain away).  I count my blessings.  But it doesn't mean I've made best buddies with diabetes.  It doesn't mean it's any easier.  It's just always "new normals".  The Dexcom addition to this journey has eased anxieties, and that's wonderful but we still have worries they just don't make me cry as easily.  I think I've hardened a little to the monster in the room.  My family and I can have conversations of what would we do if one of the boys wasn't waking up or worse when we walk into their room.  We can "joke" about highs and lows.  Both boys are gaining in independence of their own care.  But it's weird to ask "what is your pain level" when their Dexcom has been bumped and is hurting to gauge whether it needs to come out of their body.  It's weird to constantly worry whether the sticky low they're having requires glucagon or a trip to the hospital.  It's odd to be an organ for not just one child but two. 

So I made my annual trip to the Children's Hospital to deliver treat bags for the kids on the third floor, treats to the doctors and nurses in the ER, the PICU, and 3rd floor as well as a special gift to the ER doctor that I consider Sugar Bear's angel.  She's the one that figured out what was going on.  She's the one that gave the diagnosis.  She's the one that held me as I weeped.  I'll never forget.  Because before her we'd had two misdiagnoses that could have cost him his life.  Because of her, he's here.

No, it's not easier but we know how to live and that makes it special.