Embracing Life & the Child with the Disease

Posts tagged ‘Diabetes’

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!

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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!

After Dinner D-discussion

A VERY protective and defensive BIG brother

Okay.

After dinner tonight, Ethan, with much frustration, began to tell us about his science class today.  They were discussing photosynthesis and how plants produce glucose in this process. The teacher began to discuss glucose and, according to Ethan, decided to equate how glucose works in our bodies.  And, you guessed it, diabetes came up.

And it came up like it usually does.  All diabetes lumped into one generic term.  It all begins with being overweight.  It all has to do with too much sugar.

Blah. Blah. Blah.

And Ethan was, again, upset. He said she was also asking questions about diabetes.  Like:  What hormone is needed in diabetes?  What happens to the body when blood glucose is high?  Low?  What you do to lower or raise blood glucose?  Ethan said he looked around and he was the ONLY one answering questions.

I told him last time this happened in Maryland that he is absolutely allowed to RESPECTFULLY correct a teacher when they insinuate or SAY that diabetes is caused by being overweight.  Or when they generalize things into one narrow category. I encouraged him to raise his hand and say that not all diabetes is the same.  That not all who have diabetes have it because of poor life habits.  That HIS BROTHER has Type 1 diabetes and that his body will NEVER produce insulin again.

And then I went on my own tyraide in laymans terms about how the immune system went haywire and attacked the cells that produce insulin and attacked them until they were all gone.  I told him that unlike hair and nails that these cells do not grow back.  They are all gone.  And I answered a few questions he had.  Then Ryan asked a few and I answered them simply, very un-medically, but in a way they understand.

Then I offered to email the teacher and just tell her to ask Ethan about his Type 1 diabetic brother.

Hm.

He sheepishly declined ( I think he didn’t want to burn a bridge with his teacher so early in the year).

He did say he approached her after class and told her that his brother was a Type 1 and he felt she acted almost as if she was busted (his words not mine).

By this time, I was completely and totally frustrated.  And trying very hard to maintain as much calm and civility as possible.  But my mouth was going ninety to nothin’ about diabetes and what it is and what it is not and spitting out every bit of medical information that I knew, even when they weren’t listening . . . at least I thought they weren’t listening.

Then totally out of the blue, interrupting my spewing, Ryan said, “Mom!  How do you know so much about diabetes?”

And for a moment everyone froze and was silent.

And I thought …. Huh?!?!?

Then Jason, being every so very Jason, said, “Because she has a son with Type 1 diabetes!”

And the room erupted with laughter.

For Meri

Today, I wish to honor a woman, a wife, a mom, a d-mom and big sister to so many in the DOC (Diabetes Online Community) – Meri Schuhmacher

I want those who are not part of the DOC to know who she is and for many to know who you prayed for these past six months and urge you to continue to pray after learning more about her.

This is Meri
and her Amazing Men

I have never met Meri.  Not face to face.  I have heard her voice through a few short videos and even heard her sing a diabetes version of Imagine.  I am not on her top 5 list of friends, shoot, I don’t even make a “top” list in her book at all,  I am sure.  But that doesn’t matter . . . I still love her.

But like so many others, I know her diabetes story.  She is a pillar in our community, the diabetes one.  She is so often referred to as the “big sister” of the DOC because she’s been around the diabetes block a few times.  She advocates, she educates, she blogs and she has always been that friend on my computer, as well as so many others, ready and willing to answer questions, offer support and do a diabetes jig with you celebrating victories, even the smallest ones.

I don’t remember when I first “met” Meri.   I’m pretty sure it was through Tina Bell and/or Allison Littlefield sharing her blog.  But I do remember in September of 2010 when Ryan had the stomach flu, she kept up with me, with Ryan, offering advice on how to deal with a puking Type 1 child who’s blood sugar was seeing new record lows (for Ryan) and the ketones were on the rise.  I was one afraid momma.  But Meri (along with so many others) was there, offering words of concern and encouragement and instructions on how to administer a mini-gluc.

I also remember in June of 2011, I became very discouraged about blogging, about diabetes, about who I was and how I fit in the DOC and basically, I needed a good kick in the pants.  And guess who was there . . . yep.  Meri was.  And she took time, wrote to me privately, shared her heart and vulnerability; she gave me the “kick” I needed in a way that only Meri could and these four words still resonate with me, “Your story DOES matter.”  And Meri is just one of those people that if she says it, you believe it.

Meri’s diabetes story is big.  You can read it here in her words.  But what you should know about Meri’s diabetes story is that she has four boys ranging from about 8-16 and three of them have Type 1 diabetes.  She lives in California.  She is MY AGE.  She’s a blogger and boy howdy can she ever write.  Her style is easy, creative, vulnerable with just the right touch of humor.  I fell in love with her instantly through her blog.  We are facebook “friends”.   And I love and value her greatly.

The funny thing about the DOC is that I feel like I have about a hundred that I follow, who I feel like I really know, can tell you their dx story, their children’s dx story or that I go to with questions, concerns, complaints and such.  When I talk to my husband, I can say, “Reyna’s Joe, Joanne’s Elise, Laura’s Nate, etc.  And there are countless others like that.  Countless.  And then there are some that fall into the category of “I know them more than their diabetes story.”  When first names like Katie, Tommy and Levi are enough because I know them, my boys know them or know who they are.  I talk to these precious ones about more than just diabetes.  Our non-d children are even friends with their non-d children and they facebook, text and instagram!  We in the DOC all have them, don’t we?  If there were a cure tomorrow, we would still be friends even if diabetes ceased to exist.

Meri, for me, would fall somewhere in the middle of the two categories.  We both have all boys and ONLY boys.  She totally gets the madness, chaos and noise of boys in the home.  We both are deeply seeded in our faith.  It’s not uncommon for us to swap spiritual encouragement one another.  We both share the struggle between trying to be positive and upbeat and encouraging, but still struggle with the valleys of diabetes because they are real.  But something that I have always loved and appreciated about Meri is her love and adoration for her husband, Ryan, and their loving marriage.

And her Ryan is why I write today.

Back in February, her husband of almost 19 years was diagnosed with cancer – again. You can read about it in her words here.  This rocked the DOC.  It is hard enough to care for a child with a high maintenance disease like Type 1 diabetes let alone three children.  Pumping x 3.  Carb counting x 3.  Night checks x 3. Treating highs, flushing ketones, 504s, d supplies, endo appointments, etc x 3.  And she does it with such grace, strength and vulnerability.  And then she began to, again, fight a beast we have all been touched by in one way or another – Cancer.

We, the DOC, jumped to action any way we could.  Praying. Sending packages. Praying. Writing cards. Praying. Making cds. Praying.  Posting on her wall. Praying.  Praying. Praying.

We showered her with love and support as did so many who live life with them outside of diabetes.  On March 4th we were called on to pray.  And pray we did.  Believing.

Meri kept us updated on Ryan’s health.  They continued to fight.  But that was not the amazingness of the story of the Schuhmacher family.  It was their unwavering faith.  Their “Faith Bigger Than Their Fear.”  Their constant positive perspective.  Their living life in the moment believing in the miracle, trusting God, staying grounded.  Yes, there was fear.  Yes, it was hard.  Yes, there were days . . . really hard days.  But if there was ever an example of how to live and fight through cancer, the Schuhmacher’s picture would be there next to the definition.

In the next six months, there were a number of posts about successes and setbacks.  As we all know, it’s a total roller coaster ride.  But somehow, their updates always resonated with hope.  If I were to describe from the total outside, which I was/am, how they handled the last six months in five words . . . my words would be:

Hope. Strength. Faith. Vulnerability. Love.

I know there are many other amazing words to use but I just want to paint an accuarate picture for those who do not know them at all.

Then on August 28th, this is the update from Meri posted in the Schuhmacher Family’s Miracle page:

Dear Friends,
We received the news last week that our most recent brain scan shows a new army of tumors. Ryan no longer qualifies for radiation, or any trials. We will begin our last med option tomorrow morning. Urvoy is a medication given once every three weeks for 12 weeks. The medicine works on a small number of patients and takes a good 5 to 6 weeks to make any improvement. As things are progressing fast and furious, that is a very scary timeframe for us. Despite the odds, Ryan remains convinced that he will be ok. More than ever we need your prayers, as Ryan’s body is so very weak right now. Our family is setting aside this Sunday as a day of prayer and fasting on Ryan’s behalf. If you feel as though you would like to join us, we would sincerely appreciate each and every prayer offered. Thank you so much for all the good thoughts, love and prayers you have directed towards our family. It is now time to ramp up our prayers again. An army of believers has to be stronger than cancer. It just has to be. Much love ~Meri

This alone embodies Ryan’s resolve to hope and Meri’s ever present realness but belief in faith, in prayer, in Ryan.  And we vowed to pray.

I woke up Sunday morning, September 2nd praying for Ryan, before I even got out of bed.  I’m sure hundreds did.  We all love the Schuhmacher family.  Every time God placed them in my mind, on my heart that morning, I prayed.  There were reminders all over facebook and in the DOC to pray for Ryan.  And we did.

As God would have it, that very morning that Ryan’s Army (as Meri would call it) was fervently praying for Ryan’s healing and Meri and the boys, Ryan, peacefully and in his family’s arms, passed from this life to the next.

And in Meri’s brief post sharing Ryan’s home-going, she wrote this, “Our miracle was that he did not suffer.”

I wish I had known Ryan personally.  I wish I had more to share with you first hand about the amazing man, husband and father I have read so much about.  But this is what I know —

His family was German.  They owned a bakery.  Ryan worked at this bakery for quite some time.  Meri worked there too and that’s how they met.  They fell in love and soon married and began having children – boys.  In recent years, he shut down the bakery and sold bakery supplies to other bakers.  He embodied the term “a family man.” I learned on Wendy‘s wall that Ryan tucked Meri in bed every night.  I read on Meri’s wall that he made her breakfast on Saturday mornings, rather large ones at that.  😉  Every word I have ever read in a plethera of places about this man was that he was a good man, a loving husband, an engaged father.  He actively participated in diabetes care.  He maintained hope through his fight.  He believed in miracles.

And he received his miracle on the very day we all were praying.  But although we know Ryan is healed and whole in a wonderful place, Meri and the boys here are sorrowful, are hurting, are grieving.

Meri blogged on Thursday morning a post entitled “Aching.”  Please take time to read.  She lets us into her heart.  She is real.  She is amazing.  And I want you to know Meri if you don’t already.  Because I ask you to pray for her.  Pray for her boys.  Pray for healing now for their hearts.  Pray for Meri.  Pray for the grieving process she will experience.  I pray she goes through each day knowing someone is praying for her.  Someone is going to the Father for her when she can’t, when she can’t find the words.  Pray that Satan stays away from her & the boys and that those lying voices that say they can’t do this will grow silent.  Pray for strength to get through daily, by the moment when necessary. Pray for a peace that passes all understanding.  Pray that they feel God’s loving arms around them.

I will never forget in my darkest days early in my Ryan’s diabetes diagnosis that Meri wrote to me and said, “You are stronger than you think you are.”  I read it through a flood of tears that blurred the monitor as drops fell on the keyboard.  I am sure I am not the only one has ever heard those words from her.

Meri, I say those words to you now.  You ARE stronger than you think you are.

And we, your family, your friends, your DOC, are here on the days you need us.  And every day.  And that same army of prayer warriors that that you called on to pray for Ryan now prays for you.  We love you.  We are here.  Always.

Ethan’s Question

My amazing 13 year old. He is so stinkin’ tall!!

So, my 13-year-old, non-diabetic son walks in the kitchen while I am making dinner and begins to pour himself a glass of milk.

And rather nonchalantly asks me this question:

“Mom, if you had one wish, would you wish that Ryan never had diabetes . . .

And I stopped dead in my tracks, looked up at him and thought, what kind of a question is that?  And before I could answer, he continued:

” . . . or would you wish that Ryan didn’t have diabetes from right now on?”

Still frozen and silent, trying desperately to process my thoughts as he still has not made eye contact with me and is now working to guzzle a very large glass of milk in one breath.

As I open my mouth to respond, he says:

“I was just thinking that I would wish for him to be cured now, not wish he never had it.  We have met so many awesome people that we would have never met without diabetes. Plus, who we are as a family and all that we have learned, it would all be different if he never had diabetes.  You know?”

Then he immediately asked to go to the park with his friends before I could even comment.

Better that way I guess.  He doesn’t always need to see his mom well up with tears.