Embracing Life & the Child with the Disease

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No Pity Zone

Stong, Determined and Focused Ryan

Diabetes is a disease, an autoimmune disease, a 24/7/365 autoimmune disease that is extremely high maintanance.  You all, d or not, who read my blog, know so many of the details about every bite being counted, every minute of activity being considered, stubborn highs, fighting lows, etc, etc, etc.

These things are factual.  These facts cannot and will not change for Ryan for all of his life until a cure is found.

But it does not define Ryan, who we are as parents or who we are as the Lederer5.

So with that said, we do not want your pity.

I started blogging for therapeutic reasons.  I needed a place of release.  A place to be heard.  To be understood.

Then I started meeting other bloggers and other d-moms.  I became part of a community where people just “get it” because they live it too.  And I shared and still share some of the hard times, vent problems and solicit suggestions/help.

As readership grew, it dawned on me that I could also be an educator.  Diabetes is so misunderstood.  And Type 1 Diabetics and parents (if the diabetic is still in parental care) live with a sort of diabetic stigma and judgment assuming we have done something wrong.  If we had only fed them better or made them exercise more, we wouldn’t be in this place.  And if we would start to do that now, we wouldn’t need insulin.  THAT’S SIMPLY NOT THE CASE.

But I touch on those handful of things we deal with on a daily basis, all of which could have books written on them, to lead you into why I, we, do NOT want your pity.

And understandably so, if I could place myself on the outside looking in, when people hear of Ryan being an insulin dependent diabetic, feel it right to pity.  And I also understand the confusion when it’s offensive, and they don’t understand why that four letter word puts us on the defensive so quickly when we share our plight.

Pity, in it’s rawest definition,  is “sympathetic or kindly sorrow evoked by the suffering, distress, or misfortune of another leading one to give relief or aid or to show mercy” (1st definition at dictionary.com).  And this is not offensive when you look at it this way.

But pity, like so many words in our rich, beautiful language, has a negative connotation.

I don’t know of anyone who wants to be pitied.

My mind goes back to the 80s and I can hear Mr. T saying with his finger-pointing, mohawk touting, gold dripping self, “I pity the fool . . . ”

But in all seriousness.  Pity has a negative shadow.  It says your situation/circumstances define you.  It points out unavoidable limitations.  It has an emotional disconnect.  It discounts the rest of your person and highlights only the negative challenge.  And often, it offers no understanding, no genuine compassion and no help.

This certainly does not only apply to diabetes, but any life challenge that someone may encounter whether other disease, sickness, financial challenge, family dysfunction, economic status, victims of any situation, etc.  No one would choose for their person to be defined or judged by the circumstances in their life that are out of your control.

One of my most fav d-mommas, my Chicago T,  recently shared her answer or response to people when they pity her and/or her daughter in dealing with diabetes.  She simply replies, “It’s our ‘something’.  Everyone has ‘something’ and ours is diabetes.”

Don’t you just LOVE that?

That keeps the pity away.  That keeps people from comparing their ‘something’ with ours (And you know what I mean here, right?!?  We should NEVER compare heartaches or life challenges.  We should NEVER think that our hurt is greater than someone else’s and minimize someone else’s pain).  That keeps it all in perspective and brings us back to that place where all things are relative.

Ryan is too young to understand pity and its negative connotations.  But let me briefly share with you about Ryan.  Diabetes does NOT define Ryan.  Ryan has diabetes and must be considered when caring for Ryan but diabetes does not HAVE Ryan.  He knows no limitations because of diabetes, not with food (yes, he can still have sugar and sweets and cupcakes and candy, but in moderation as you would do for any child and with insulin), not with activity, not with learning, not with anything.  He may have to work a little harder than “the average bear” to make sure his sugar doesn’t go too high or too low, but there are no limitations.  Prior to Ryan’s dx when he was only five, we noticed characteristics in him like determination, structured, meticulous, conscientious, strong, driven and courageous.  And diabetes has only heightened these character traits.  There is so much more to Ryan that diabetes.  He is a great reader.  He is super smart.  He has a great, sarcastic sense of humor.  He is full of energy.  He is happy.  He is a people-pleaser.  He is loving and lovable.

And why do I tell you all that (and I could go on and on and on)?  Because pity discounts all of that and only focuses on the challenge, the hard – the diabetes.

There is so much more to Ryan than diabetes.

There is so much more than diabetes to me, as his mom, too.  My life is not over.  Our family is not doomed.  Life is still good.  I may be frustrated because it’s hard.  I may be tired because I can’t figure out what’s going on with all the variables and have to check him or treat a low or fight a high all night.  I may be weary of how demanding it is or the simple truth that it does not go away or he does not grow out of it.  I may be heart-broken at times because in my mind, he’s my child, it’s so much for a seven-year old to bear. But I want you to know I do not want your pity.

Rather, I want your compassion.  I want your understanding.  I want you to be educated before you form an opinion.  Compassion and pity have the same raw definitions.  But compassion has heart.  Compassion is enveloped in emotion.  Compassion offers help when it’s appropriate.  Compassion sees the child beyond the disease.

Pity sees diabetes.  Compassion sees Ryan.

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Thankful Thursday . . . Stolen Moments

I missed my Thankful Thursday day for yesterday because I just lost track of my days.  But I am going to share my THANKFUL on Friday because it’s a good thing to recognize the small blessings and this actually did happen on Thursday (yesterday) morning.

I went upstairs to wake the boys for school at 6:15a.  I am NOT a morning person.  I wish school started at 10a and went until 4p.  That would be perfect for this momma.  But I went up, eyes half-open, not even brushed my teeth yet and to my surprise, Ryan and Aaron were up, had brushed their teeth and were almost dressed.  I laughed and asked what was going on and Ryan said he set the alarm and got up at 6:00 pm their own.

I looked over at the bunk bed that sleeps three (full on the bottom and twin on the top) and Ethan had slept on the top bunk but at some point had crawled onto the bottom and was still sleeping.  He looked so warm and comfortable and cozy, I just couldn’t resist.  So I crawled into bed next to him and snuggled up and closed my eyes.

I felt eyes like a laser peering through my brain like a super power that made me feel weird, and I opened my eyes to see Aaron, who is NOT a morning person and has gotten progressively more sleepy though this first week of school, staring at me, coveting my cuddle with Ethan and so sad as if I was taunting him with my spontaneous morning rest.

It broke my heart.  I said, “Aaron, do you want to get back into bed.”  And in a cry-like voice he simply replied, “Yeahhh.”  I did what any mom would do, I lifted the covers, patted the bed, and motioned for him to come and cuddle.  His eye lit up and moved with grease-lightening speed and nuzzled in like a puppy with a new blanket.

My eyes shifted to Ryan who was perplexed for a moment and then said, “Can I come too?”  And I grinned and said, “Absolutely” pushing my oldest over who was a tad annoyed that his sleep was being interrupted (he doesn’t have to get up until 7ish, later school start time).

Me and My Blessings

And there we were.  All four in a full-size bed.  Lying there perfectly still with the lights on and our eyes closed.  And it was heaven.

After a few minutes, Ryan, my time conscious freak of a child said, “Mom, we’re going to be late.”

And we laid there for a few more.

The boys weren’t tardy for the school bell, but we were a little late in our morning process that hasn’t quite been nailed down yet this year.

It was just a few minutes.  It caused Ryan to leave without his pdm and his morning snack that I had to run back up to school, but it was worth it.  We had a moment.  A lazy one.  And it was stolen.  But it was precious.

AND.I.AM.THANKFUL.

Random Thoughts on Monday Morning . . .

It’s been a whole week since I have posted anything. Life has been crazy busy the last few weeks and will continue to be so until the end of the school year, perhaps. Between Jason’s promotion at work and him putting in more hours in the transition, a Bible study that I facilitated, making my first wedding cake, singing in the wedding and in a Mother’s Day quartet, working with Ethan and props and costume for Willy Wonka, juggling schedules with Kung Fu, doctors appointments and other church responsibilities and keeping up with the dailies like laundry, housework and taking care of the boys . . . life, like I am so sure for everyone else in April and May, is pretty hectic. Have never been so excited for the summer!!

With all the madness, Diabetes has to come along as well. Ryan’s sugars, despite all the craziness, have stayed pretty level. But in the last few weeks or so we have hit a bit of a resistance level from him. Resistance probably isn’t the right word. It’s more like reality is setting in that this doesn’t just go away. He has asked if he can skip bedtime snacks, not do his shots, occasionally doesn’t willingly carry his backpack when we go somewhere and just gets a little frustrated with the routine at times. It doesn’t help that in the busyness of everything else that there have been a few times that I have sat down to eat with Jason working late and forgotten to do his shot until Ethan or Ryan reminds me. I guess that just goes to show it’s all still pretty new.

We do a lot of lovin’ and reminding him that he’s healthy now, unlike the weeks prior to diagnosis and that he feels so good and that he is sleeping all night long. The reminder of sleep often gets things good for him pretty quickly. He was so thankful for sleep after he started on the insulin. The child was getting up either to use the bathroom or awakened by horrible “sweats” or bad dreams probably caused by his little body fighting lows or wondering aimlessly around the house, almost like a sleepwalk fighting either highs or lows . . . only God knows!  Again, we are so thankful for His protection during those weeks prior.

This week we will focus on maintaining good sugars as next week, we will go see the endo and have another A1C test. Why is it that I feel like a student who has studied but not feeling quite prepared for that semester exam? I know there is no pass or fail with A1C, it just gives us a good measure to know how best to take care of Ryan. But I guess as a parent of one so young, his health is completely dependent on us. AND I WANT A GOOD GRADE!  Something under 7.5 would make me very happy. I can see what his average sugar is on his meter . . . but we don’t have a CGM and only test about 4-6 times a day. I don’t know how his sugar spikes in the middle of the night or if it drops low unless there is a reason to check in the night (not feeling well or too low to go to bed, etc). Plus, I always wonder how closely the meter reads are between our glucometer at home and the blood test. Oh, I’m not going to worry about the 20th today . . . the appointment’s not until next week . . . I’m just sayin’.

Today, I will be glad that over the last 8 reads, three of them have been 111. We like that number here. And it makes Ryan smile. So if you think of Ryan . . . Pray for 111. 🙂

Have a great Monday!!

Aaron Elijah

Aaron is “our bonus” and our comic relief.  I recently had a friend describe the three boys this way . . . “Ethan and Ryan are brothers.  Aaron is an only child.”  He often thinks that way.  He stays in his own world and is content to be in it alone.  He loves to make people laugh.  When he talks, he sounds like a cartoon character.  His mind works faster than his mouth and he wants to talk quicker than the words come to his mind.  Creates a lot of “um, um, um, um” said with lightening speed.  He has a great tolerance level, but when he has reached his limit . . . look out . . . he’ll come up swinging.  His favorite thing right now is computer games.  I am amazed at how well he maneuvers around the net from one kids sight to the next.  He loves his sleep.  When he is tired, he is not the kid who fights it; he just lies down and goes to sleep.  And he sleeps in, which makes him Momma’s favorite.  😉  He loves to stay in his pajamas all day and loves to stay at home.  He won’t ride a bike with training wheels.  He has no interest in it.  Instead he loves to be on his red tricycle that is only good for children 3 and under.  He looks so funny on it, but he doesn’t care.  He loves Sunday School, Mission Friends, Children’s Choir and Awana, and affectionately calls them all “my class.”  He has not asked Jesus into his heart yet, but has recently started asking a few questions.  He’s so not there, but I love that his mind is trying to work it all out.  He is the only one of the three that really can’t carry a tune ~ AT ALL!  But he is so happy when he sings!  He still loves his favorite stuffed animal and “ducky blanket” (that doesn’t have a ducky on it?!?!?!).

Ryan Edward

Ryan is our diabetic child, diagnosed in December 2009, but there is so much more to Ryan than diabetes ~ let me introduce you . . .

Ryan is very literally “our miracle.”  Few have ever been prayed for more than for Ryan.  Jason and I, our family, our church family our friends, my dad’s students . . . we literally prayed this little boy into existence.  We had four miscarriages in two years longing for that second child.  And boy was he ever loved and spoiled when he got here.  And the one who spoiled him most . . . his big brother, Ethan.  Consequently, perhaps Ryan’s most favorite person is Ethan; he wants to be just like him ~ and he is.  This little boy is crazy smart, completely lovable and has the cutest dimple on his left cheek that you have ever seen.  He loves to laugh.  He also has taken a huge interest in food and cooking; his favorite thing to make is meatloaf!   He just started reading a few months ago and is incredible at it.  He’s a tad bit on the bossy side, but that’s because he’s a perfectionist.  He is incredibly sensitive to the feelings of others.  He embarasses easily and when he gets embarassed, it’ll break your heart.  At four years old, Ryan asked Jesus to come into his heart and save him.  It’s a great story I will have to share in it’s entirity some other time, but this little boy was determined and convicted.  When I’m down or upset or just having a bad day, I can usually find Ryan cleaning off my bathroom counter or making my bed or trying to do the dishes.  When I ask him what he’s doing, he replies, “Cleaning up so you can be happy.”  I don’t know that it reflects well on me as a mother or housekeeper, but it sure does tell you a lot about his little servants heart.  But, don’t get me wrong . . . he’s strong willed and can argue with the best of them, but I think the tenderness far outweighs the stubbornness — most days!

Ethan Jason

Our amazing oldest boy!  Ethan is a great big brother and he takes a lot of pride in that.  He’s an “A” honor roll student.  He made All-District Honor Choir.  And we just found out he is one of six fourth graders at his school to score high enough on an IQ test to be screened for the gifted and talented program for fifth grade.  He just got his own cell phone and LOVES to text.  He’s our socialite . . . makes friends easily and loves to be around people.  One of his favorite things to talk about is heaven; he knows he has four brothers and/or sisters there (we had four miscarriages before having Ryan).  He’s into long, shaggy hair and knit skater hats.  HeLOVES his bike and playing ball with his daddy.  We are signing him up for a Kung Fu class this week to see if he has any interest in martial arts.  He already has girls calling and knocking on our door.  Reading is something he does on his own that he likes to do.  His favorite movies are action figure or old comic book movies and anything Star Wars.  Something most people don’t know about E is that he has a great interest in musicals.  He has recently discovered “The Sound of Music” and “Annie.”   But what I am most proud of with Ethan is his heart.  He asked Jesus to come into his heart when he was five, about two months after Ryan was born.  And after he said his prayer and Jason was going over what he had done and asking him questions about it, his biggest concern was Ryan.  “What if something happens to Ryan before he gets saved?”  Forever being the protective big brother and caring unashamedly.  He is so sensitive to the needs and feelings of others.  And he is miserable if someone is upset with him and he can’t fix it.  He really has a desire to do what’s right, to be pleasing to others and to the Lord.  But I think most importantly, Ethan is his Momma’s Boy!

Amy

I am unspeakably thankful for my God and my salvation . . . without which I would be nothing.  I am crazy in love with a man who more than tolerates my moods, but loves the adventure of them (boy have I been blessed with that). He is my best friend, my moral compass and I value his relationship and opinion more than anyone else’s.  I am mother to three boys: Ethan “my joy,” Ryan “my miracle” and Aaron “my bonus.” I am forever amazed, exhausted, in stitches and truly blessed that God entrusted me with these most precious gifts. My most sincere desire is to raise them to be real men who love the Lord, understand priorities and live life to their fullest potential.  I spoil myself with strong coffee and dark chocolate . . . my expanding hips are proof of that.  I am a people person. I love to talk, laugh, email, facebook and be on the phone. I need people connection.  “Friend” is not a word I use lightly. Friendship is not a noun, it is an action verb. God has blessed with some incredible people I call friends. They know me without me having to explain. I can be myself with them, flaws and all, without fear of judgment. They laugh at my shortcomings and teach me how to laugh at them too. I have a precious few that finish my sentences, know what I think without words, pray for me on a regular basis, pray with me, & share the most intimate, vulnerable moments.  One of my most sincere passions is writing. One day I will write a book or two, even if no one buys it. It’s the best way of expression and release for me.  I LOVE to talk about heaven. All four of my grandparents are there, my four miscarried babies are there and countless others who have touched my life in one way or another that I long to hug and sit and have that perfect cup of coffee.  I still love to cradle my boys and sing to them. The first lullaby song I ever sang to Ethan was “Cradle Song” by Sandi Patti. Then I graduated to “Baby Mine” by Bette Middler in Beaches. And lately, it’s been “My Sweet, My Lovely” by Plumb. But for some reason, they all three ever so often ask for “Baby Mine.” As silly as it sounds, NFL football is almost a passion of mine. I LOVE football season!!! I don’t know if it’s about bleeding blue for the Colts, despising the Dallas Cowboys or loving the trash-talk and competition with my family (Jay, Dad, Missy and Mike). But I LOVE football season.  Nothing gives me peace more than singing . . . there is a praise song or love song to describe every mood, emotion, thought or feeling. But particularly in my spiritual walk, singing gives me that “peace that passes understanding” when I cannot seem to find the words to pray. I consider it a most precious gift from the Lord that I try to give back to him over and over in my life.  My most favorite, all-time, sappy movie is “Pride and Prejudice.” I understand Elizabeth, every aspect of her character, and married my Mr. Darcy! Yes, I am still very much a girl!!!!!!!!!!  My husband is convinced that God didn’t give me a girl because I couldn’t live/share my household with another female!