Embracing Life & the Child with the Disease

This is a blog post that I started back in the late spring. I thought it worthy of posting even though it’s old:

Ryan was dx’d exactly a week before Christmas his kindergarten year. And the adjustment to the new normal was a “village” affair — Lederer5, extended family, neighbors, church family, and more! But really, truthfully, a rock that I do not know how I could have survived those first month without was the school.

Ryan was half way through kindergarten and there was thought and discussion about pulling him and starting him again the following fall in kindergarten, he was a young kinder with his birthday in July anyway. But something pushed me into sending him back after Christmas break for schedule and routine — very, very important for a diabetic when regulating numbers at the beginning. But, boy howdy, was it ever hard to think about putting him in someone else’s care and driving away for seven hours a day. I have a hard enough time with that even still with my non-diabetic children.

I’m a helicopter mom … AND PROUD OF IT! But the only reason I was able to trust him in another’s care was because of a steady core of caregivers at school. His teacher was amazing and so attentive to him and eager to learn. But the front office: The nurse, the secretaries, the principal and vice principal were not just good for Ryan, they were good for me. They walked beside me. They let me cry and be afraid when Ryan went on to class. They ALL learned how to help Ryan. They played games with him teaching him how to FEEL his blood sugar. A true, total godsend!

And because whatever I needed, whatever Ryan needed, was never a battle and was always accommodated, I NEVER put a 504 in place for Ryan. What is a 504 Plan?  Simply put, a 504 plan is a legal document falling under the provisions of the Rehabilitation Act of 1973. It is designed to plan a program of instructional services to assist students with special needs who are in a regular education setting. I have never felt the need before … until now.

And why, you ask, do I feel it necessary now? Two words = STANDARDIZED TESTING. Ryan is in 3rd grade. And in Texas, STAAR testing begins. It replaced the TAKS, that replaced the TAAS, that replaced the TEAMS and so on and so forth. I am NOT a fan of standardized testing. And in truth, I don’t know of anyone who is. But in public education, there is no way around it. Ryan is brilliantly smart. BRILLIANTLY SMART. I am not exaggerating. He just finished a 357 page book he started reading two days ago. He is gifted with numbers and would be even if his life wasn’t all about numbers with diabetes. He loves to learn. But we have learned that with practice testing for the STAAR test that is in April, that he is very, VERY anxious for this test. His sugar spiked to over 300 and stayed there for almost three days anxious about the PRACTICE testing for STAAR in January.

Unfortunately, he cannot control his blood sugar. And with these highs for Ryan, when we believe they are at least partially induced by stress/anxiety, his body seems to become resistant to insulin, the body simply does not do what it is supposed to do with that synthetic life-saver until his nerves calm down. We are working on dealing with stress/anxiety, practically and with tests, with Ryan. And we have always wanted to give Ryan the most normal life and allow him to do as closely as possible what all other students are doing. And let me tell you, that’s hard work. And I have feared a 504 because I don’t want him to EVER use it as an excuse, as a crutch. And I think, he won’t have 504s in the workplace as an adult. So let’s teach him to roll with the punches, prepare him for his unique life. But you know what? He’s 8. He’s not an adult. Not even close. And I can’t expect him to act like one. And, so much is put on these standardized tests. That’s a whole other blog on a totally different blog site and I won’t jump on my soap box now.  (BLAH – I already feel my blood pressure rising.)

So, is it unfair to not only try to get him to cope with nerves and do these extensive tests and practice tests and checkpoints and unit tests AND expect him to work through it with a dropping, spiking or swinging blood sugar that does very much effect him cognitively with concentration and focus? I have recently decided the answer there is most definitely, “YES!”

So, with the counselor at school, the nurse and Ryan’s teacher, I tearfully sat down and we designed a plan for Ryan, for the “just in case” scenario.

And during the STAAR testing in April, we utilized that plan. His blood sugar was way too high during testing. He had to stop, bolus a correction (give insulin to bring his sugar down) and he walked with one of the coaches for awhile to get him up and moving while the insulin did it’s job. And it went smoothly. No one can look back and question anything that was done. The school and the teacher(s) are protected by that document and so is the integrity of Ryan’s HIGH score on that test.

And bonus: it’s already in place for this year and for the years to follow when he leaves the campus for a new one next year.

And I’m thankful.

Ryan’s Rebels

Ryan’sRebels. Type1Diabetes. Cure. Embrace. insulin. omnipod. pods. Humalog. bloodsugar. hypoglycemia. hyperglycemia. prayers. Ryan’sRebels. family. nurse. syringe. JDRF. endocrinologist. PDM. carbohydrates. diagnosis. autoimmune. December17,2009. Ryan’s Rebels. Cure. Prayer. Family. Ryan’sRebels. Cure. embrace. Embrace. Type1Diabetes.

NightChecks

24/7

 

I have been working on a blog post like this that Meri from Our Diabetic Life wrote today, my post was based on a song.  A song that I think Meri might like, and I wanna share it with her and with you. So forget my original writing and let’s just go with this today:

But to get the full idea, you must first read Meri’s post!

The DOC (Diabetes Online Community) has been a godsend for me. Yes, it has caused me a little hurt and gets my feathers ruffled at times because we don’t all agree 100% on everything. We are human and for it to be real, I suppose some friction must come along at times because we are family — and family’s fight from time to time.

But there are some things that we all have in common … one of which is to connect and encourage whenever we can.

Meri, life is full of adjustments for you that I cannot fathom because your path was not chosen for me, it was chosen especially and specifically for you. Nothing that has happened in your life has never caught HIM by surprise … and he already has a way for you to perservere, thrive, SHINE.  And boy do you ever shine in it, even when you don’t think you do, especially when you don’t think you do. I am blessed to have you a part of my DOC and a cyber friend.

But I wanted to share this song with you that always makes me think of Ryan and my d-moms:

Carry On by Fun. Watch it here.

But here on the lyrics if you don’t want to watch the video:

Well I woke up to the sound of silence
The cars were cutting like knives in a fist fight
And I found you with a bottle of wine
Your head in the curtains
And heart like the fourth of July

You swore and said
We are not
We are not shining stars
This I know
I never said we are

Though I’ve never been through hell like that
I’ve closed enough windows
To know you can never look back

If you’re lost and alone
Or you’re sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

So I met up with some friends
At the edge of the night
At a bar off 75
And we talked and talked
About how our parents will die
All our neighbours and wives

But I like to think
I can cheat it all
To make up for the times I’ve been cheated on (I like to think that there is a positive attitude here)
And it’s nice to know
When I was left for dead
I was found and now I don’t roam these streets
I am not the ghost you want of me

If you’re lost and alone
Or you’re sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

Woah
My head is on fire
But my legs are fine
Cause after all they are mine
Lay your clothes down on the floor
Close the door
Hold the phone
Show me how
No one’s ever gonna stop us now

Cause we are
We are shining stars
We are invincible
We are who we are
On our darkest day
When we’re miles away
So we’ll come
We will find our way home

If you’re lost and alone
Or you’re sinking like a stone
Carry on
May your past be the sound
Of your feet upon the ground
Carry on

Carry on, carry on

Now there is obviously one verse that does not apply to d-moms and our relationships to and with each other. But the bolded lyrics sure do. The silence. The dark of the night. And some of us, when we were faced with the dx felt as though we died inside and were just walking zombies and the DOC found us and made it to where we aren’t alone.

But I love the part of Meri’s post (again, GO READ IT!) that talks about giving ourselves credit. YES! We need to, we should, we deserve it! And that’s why I LOVE the group Fun. I can turn on their music and it always cheers me up and I find myself irresistibly singing along.

Meri, may it go along with your theme for the day and give you a fraction of the encouragement you have given me … and countless others. And even though the first two-thirds of the song questions it all, the last third emphatically decides – “WE ARE SHINING STARS!” And we are!!

You are constantly thought of and prayed for. Love you!

And CARRY ON!

The First Overnighter . . .

Here’s our family’s motto regarding diabetes:

Ryan is a kid first and diabetes has to come second.

We let him have candy, eat cake, fill a large cup of the non-sugarfree slurpee, eat an enormous amount of carbs for a special occasion, etc.  He does the things that we would let him do if diabetes was not a part of our family.  Why?  Because we do have insulin that allows him to do such.  We watch his weight, make sure he is active and make wise food/snack/meal choices most of the time.  But he is an 8-year-old boy and I am determined to let him live the life of one – as carefree as possible.

But one thing that has been a very scary thing for me to think about is that all-nighter away from family, away from me.

I don’t check his blood sugar every night.  I just don’t.  We use wisdom and do what we need to, what we must.  We do basal testing whenever necessary to try to get that full night’s sleep more times than we don’t.  But there’s never a guaranty that six hours or so of uninterrupted sleep will happen.

BUT … the idea of him being away from me where I can’t check if I have that uneasy feeling or if something goes amuck has been very difficult to swallow.

I figured my first time to cross that bridge was going to be this summer when he asked to go to junior camp at church.  But I solved that problem.  I’m going as a counselor.  LOL.  But seriously, I am.

But his best buddie in school, Z, just had his 9th birthday.  These two buddies are inseparable.  They are both middle children of all boys (but Z has twin brothers who are in 6th grade and a younger brother in 1st grade).  They both wear glasses.  Both love football.  Both LOVE to read.  Two pease in a pod.

So his mom, Ryan’s art teacher (so she is familiar with Ryan’s d regimen), Mrs. B, asked if Ryan could spend the night on a Friday for Z’s birthday.

Deep breath.

I knew I had to let him do it.  Diabetes will not dictate what he can and cannot do, right?

Here’s how the fb message invite went:

Capture 1

So we exchange a little information and then this … the awesome part is her LAST SENTENCE!

Capture 2

Well, needless to say, lots of happy tears.

But still a bit of anxiety.

Friday rolls around.  She’s so relaxed, so good.  Asked a few questions.  Then I gave a little instruction.

And I left.

The texts that I received that night and in the morning were amazing!  They included:

  • A picture of Ryan’s dinner plate out to eat with his sugar so I could give the carb count.
  • A pic of the size of his piece of birthday cake along with pics of the nutrition labels of the cake mix, the icing mix and the sprinkles.
  • An 11pm text with Ryan’s blood sugar followed up with “Enjoy the rest of your evening off, Mom, we’ve got it covered.”

And then early in the morning, I got this fb message:

“Boys are still sleeping, but I went ahead and put a yogurt and a cup of milk next to Ryan’s kit in case he feels bad when he wakes up. I was worried he wouldn’t be comfortable waking up anyone or rummaging through the fridge to help himself.”

Yeah, that made me cry and made my heart happy.

He woke up with just as perfect blood sugar numbers as he went to bed with!

I’m just wondering … could it be any easier on us d-moms?

When I went to pick him up that morning, she said they had figured his breakfast carbs together as a family at the breakfast table, figuring eggs, bacon, milk & biscuits.

And boy did it do wonders for Ryan’s confidence and FREEDOM.

I couldn’t be happier.  And I couldn’t be more grateful to Z’s family.  They were all amazing.

We are so blessed!

Just one of the pictures I recieved that night!

Just one of the pictures I recieved that night!

GoGurt and a Kiss

Diabetes doesn’t sleep.  And blood sugars still fluctuate at night.

Admittedly, we don’t check EVERY night as some do (that is entirely a different blog post).  But all too often, checks in the night are completely necessary.

Our schedule is that Ryan checks before HE goes to bed, then Jason and/or I check before we go to bed which is usually between 11:00 – midnight.

Several weeks ago, I went up to check Ryan and he was 72.  Too low to go to bed for the night, we like to see that number around 120.  So I went downstairs to get a GoGurt, our nighttime sugar low treat of choice.  It has a great combination of carbs/sugar and protein to keep his number up longer.  Bonus:  we can just squeeze in his mouth and all he has to do is swallow.

Jason followed me back upstairs with the GoGurt to watch (and to be engaged . . . love this man!).

Usually, we can get Ryan to chew, drink a juice or milk and swallow in his sleep with no effort at all.  But for some reason, Ryan was very hard asleep and was fighting a bit.  It’s a delicate issue for a mom not to startle the child while waking him to treat a low and arouse him just enough to swallow so he will go right back to sleep as undisturbed as possible.

But for some reason, Ryan was not so cooperative this time.

I quietly and delicately worked to rouse him enough to take the yogurt but to no avail.  Every time the squeezer would touch his lips, he would jerk his head to the side not just avoiding it but wanting no part of it at all.

Jason, being the awesome dad he is, decided to video this sweet boy.  Click on this link to watch and see how sweet this boy really is!

A Text + A Friend = Hope

Attention D-Mom’s

THIS IS A MUST READ

I have a friend, Tiffany, that I have known since I was 13.  We are exactly one month apart.  I am older than her for 30 days every year.  We have walked through most of our lives together, even the “missing years” have all been caught up and it’s like there was never an absence.  We’ve shared first loves & first heartaches, the joys of marriage, the heartache of miscarriage, shopping days, pedicures, the passing of grandparents, failures, scary times, times we got in trouble together, times we should have gotten in trouble together, and we can sincerely JOY in each other’s successes.  No pretenses.  No expectations.  Complete, total and unconditional transparency.  We are kindred spirits and I.LOVE.HER.

She had her first and perhaps only child last December, a miracle baby after waiting for about a decade for him.  G is the most precious baby.  A bundle of happy.

But back in the summer, she faced her first hard time as a parent when G had to be treated for plagiocephaly, which is when a baby’s head is flattened on either the top or the side.  The treatment is rather inevasive – the wearing of a band, or what I all too often crudely referred to as a “helmet”, to protect and reshape his head.

Now, while that may not be the scariest infant disorder/condition, those of us with children understand the fear and the ache that takes place when our children have to go through anything.  And when it’s a child you have waited for, wept for and prayed for nearly a decade, it’s just simply hard to deal with.  It broke my heart that G had to wear this band and had to have something “corrected.”  But it broke my heart for Tiffany knowing she would ache because this was happening to her baby.  She has let me walk this road with her, taking every step, every update, every frustration in stride.  We, together, counted down the days G could take his band off forever.

Monday was that day.  Band off.  Life good.  G perfect, as usual.  A victory.  And something they could put behind them.

I smiled when I looked at my phone and saw a text from her expecting to see a pic of G without his band.  But instead, this is what I read:

“I meant to tell you this Saturday — as I have been counting down to today and thanking God we have only had to deal with G’s band for 3 months that I also am praying for the day that you (and all d-moms) can count down to that last insulin shot . . . “

Ok, d-moms.  Go get a kleenex . . . I’ll wait.

Is she the absolute most amazing friend ever?!?!  Isn’t that all we ever want, just someone who doesn’t live the life to somehow “get it”?

No, I am NOT sharing her either.  She’s MY friend.

And I’m praying for that day too.  Hoping.  Believing.

And when that day comes, as we do all events in our life, BIG and small, one of the people I will be celebrating with is Tiffany.

Loves the Crickets

Ryan is back at the elementary school here just north of Dallas that he attended when he was dx’d.

There are about a hundred reasons why this is important and wonderful, but I’ll leave that for another time.

In first grade and the beginning of second grade here, I have not requested a teacher for Ryan.  I don’t know teachers unless Ryan has had them so I wouldn’t even know who to request.  I know that G (The nurse) and Principal S know Ryan and all he needs and know me and my needs as a parent and I trust them to place Ryan in the class with the teacher that best fits him and diabetes.  They did superbly in first and second grade, so why would I not trust them for third?

FYI – I do the same with Aaron.  They know what he needs and the high maintenance parent I am and choose a teacher accordingly.  I have loved all of Aaron’s teachers as well.

On Thursday before school started, only about 10 days after moving back to Texas, I walked in the office and asked if they knew who Ryan’s teacher would be yet so I could connect and educate before Monday (I know, fellow d-moms, I was very behind!  But seriously, I just moved across country AGAIN for the second time in six months, give a momma a break!  LOL).

When I asked the attendance secretary, who is a friend of mine that I go to church with, about a teacher, G butted in –

“I’ve already taken care of that.”

As I inquired further, a teacher had already been hand-picked for Ryan and G had already done the diabetes educating.  She kept his folder from last year and gathered all the handouts and educational sheets, took his parameters and orders from last year and went over them with the teacher and even planned out a tentative sugar check schedule.

All I had to do was come in Friday morning when the three of us met, went over what G had organized, asked if I had anything further and it was done.  Easy-peasy.

The teacher, Mrs. W, is amazing.  She took detailed notes.  Wanted to know much more than just getting by.  She doesn’t want to just depend on G, she wants to know how to take care of him.  I Love Her.

In the first email that I received from G (which Mrs. W also gets copied on all the numbers so she knows what to watch for) on the first day of school that lists his snack sugar, carbs and what was bolused, there was also a phrase tagged on the end, “He loves the Crickets.”

Crickets?!?!  What the heck?

So I asked.

Ryan goes to the nurse three scheduled times a day:

9:25 – Snack sugar check and bolus

11:45 – Lunch sugar check and lunch

2:20 – End of the day check to go home

Mrs. W set her phone to alarm at those three times and set the ring tone to be crickets.  Now, when he hears the crickets, he quietly gets up and goes to see G.

As trivial as this may sound, it meant so much to me . . . and to Ryan.

It’s all a part of making him feel safe and secure and letting him be a kid at the same time.

Today he had a sub.  We knew in advance and prepared Ryan for it (side note – Ryan hates change and gets anxious with subs because of d).  Ryan was fine until I was leaving school and he was going to class and he nervously said, “Mom, what about the crickets?”

With d, just like in life, it’s the little things, the individualized efforts, that make all the difference.

Love you, Mrs. W, and are looking forward to a wonderful year!

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