Embracing Life & the Child with the Disease

From The Lederer5

 
I want to preface this letter with who I am.  I am a d-momma relatively new to this d-life.  I struggle with d from time to time both emotionally and physically with Ryan.  I embrace the life that d demands us to live.  I really do, it was the life chosen for us for whatever reason and we will not just get by and “make the best of it.”  We will thrive, be happy and live full.  And I live in a house of boys where all of life is about a battle, whether that’s light sabres, swords, guns or hand to hand combat, it’s all about the battle or the war.  And lots of days, d is a battle for us still.  Mind you, not a miserable fight.  But a battle for balance in all things.  And this is the perspective I have on my good days that I’m striving to have every day.  So here goes . . .

 

To D from This D-Momma:

When we first became aware of the battle.

You entered our life on December 17, 2009 and changed our lives forever. 

Actually, you showed up long before we realized you were there.  You zapped his energy.  You made him sad and irritable. You made him anxious to be away from me and his daddy because he knew something was wrong. He was lethargic, seldom smiled.  You stole his joy. You made him sick.  So sick, in fact, that we were afraid.  You made doctors believe he had organ damage and they were dumbfounded that you had not succeeded at that.  For a time, you took over his body completely.

On December 17, 2009, the dx came. You were there in his body, and you were there to stay.  And that’s when we became aware of the war we were facing.  But boy, did you choose the wrong family to pick a fight with. 

You chose Ryan, the smartest, most regimented and habitual and literal five-year-old ever who possesses a courage and maturity that some adults can’t muster when faced with a lifelong challenge.  It’s hard to discourage him or trip him up.  He is a tough competitor.  He will not go quietly.

But I wonder how surprised you were to find out that you were not just battling Ryan, a then five-year-old.

Ryan's Daddy

You were also battling Ryan’s Daddy, Jason, who forever researches for new and innovative technology and keeps up with the progress being made toward a cure that will rid you forever along with being a great d-dad always involved in the dailies of Ryan’s care.  Daddy is his provider, from finances to insurance, and his strong protector.

Ryan's Big Brother

And you picked a fight Ethan, his big brother, then 10, who eagerly wanted to learn about you so he could help defeat you.  He wanted to understand how you worked and be an active participant in giving shots, treating lows and working off highs with activity. And when we are not in the safety of our home, he is an avid defender and encourager.

Ryan's Baby Brother

And you also were going to be up against Aaron, then 4, his baby brother who would be very conscious in supporting Ryan in his diet, not eating when Ryan couldn’t, being patient with the early on rigid schedule and always asking if Ryan “had enough carbs for that” and was and still is the constant comic relief when dealing with you made life stressful.  

Ryan's D-Momma

But you also met your match with me.  I am stubborn.  I am determined.  I am a being of structure and order.  I am a fighter.  I am that mother bear who will protect and defend her bear cub to the death.  I am determined that you will NOT steal his childhood.  And I will keep you under healthy control for Ryan without making him feel that you stand out in his life above everything else.

Let me tell  you about the lifelong war you have with the five of us —

You may have entered our life . . . but you will not control it.

You may interrupt our days . . . but you will not mandate our time.

You may beat us down . . . but we will get back up.

You may be able to discourage us . . . but you will not steal our joy.

You may win a battle . . . but you will not win the war. 

You may be with us all the time . . . but you better get use to being dragged along for the ride.

We will go to ballgames and eat cotton candy.  We will go to birthday parties and eat cake and ice cream.  We will go on vacations and swim in the ocean all day.  We will still eat pizza and pasta on a regular basis.  We will Trick ‘r Treat.  We will make sugar cookies with home-made powered sugar icing at Christmas.  We will have candy in our Easter baskets.  We will let him do all other things that little kids do even though it requires a little more work. 

And regarding Ryan . . . You will not stop him.  You will not keep him from fulfilling his dreams.  He will win.  He will succeed.  He will have nothing less.

And nor will I.  Yes, you picked a fight with the wrong boy, with the wrong family.  You may always be a part of him but you will never have him.

If necessary, I will not sleep. I will regularly do sugar checks.  I will figure out problem foods.  I will carry a meter and snacks and juice and icing with me at all times.  I will forever crunch numbers.  I will be vigilant with his activity.  I will educate others so they will know what to do and how to treat him and YOU. 

And he will have a good life.  A happy life.  A full life. 

And we will see it though to the end . . . all five of us . . . Together.

And in the end, we will be better, stronger, because of you . . . in spite of you.

So buckle up and enjoy the ride!

Sincerely,

The Lederer5

The Lederer5

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Comments on: "From The Lederer5" (17)

  1. Janea Coker said:

    We are so proud of all of you!
    We are praying for you each and every day!
    Keep fighting!!!
    God Bless you-
    Love Always-
    Jeff and Janea Coker

  2. A blessed little boy to have the support you all offer him. I know you will win and always remember you have back up, we are all in this together. Our boys will be fine.

  3. You have a beautiful family. I am sure Ryan feels so loved with all the support he gets from his family.

  4. Amy,

    What a powerful letter. I love how you addressed each member of the family’s involvement in “D” care and in supporting Ryan. I think we are all gonna end up appreciating this life a little more…our adventures will be a bit more spectacular…as all of our triumphs take a bit more courage, a bit more planning and preparation, and a whole lotta HEART!

    xoxo

  5. WOOHOO!!!!!!!!!!!! Why do I feel a need to don some camouflage and hunt down diabetes???

    This was awesome!!!!

  6. Awesome hun. I almost cried…..seriously. So you know it’s good. I love you!

  7. I want to cheer you on! Go Lederer5! Go Lederer5!!!! Knock D out of the park!!!

    This post hit home for me. My family is living a good, happy life and fighting the fight just as strongly for Jack.

    I loved this line: “You chose Ryan, the smartest, most regimented and habitual and literal five-year-old ever who possesses a courage and maturity that some adults can’t muster when faced with a lifelong challenge.” Reminded me of Jack. 🙂

    And your preface about battles made me smile. I understand the analogy you were making, but on a literal level, with two sons, who have light sabers and water guns and swords and who like to wrestle, I can so relate! 🙂

  8. That is my girl! A can do attitude! Take D and wrestle it to the ground!

    Your family…our family…we will win the war!

  9. Amazing letter. The power, determination and courage you present is inspiring. Keep up the fight!

  10. Amen, sister!! Preach it!!!
    I am so standing up and cheering for you and your family…and all of us fighting this fight.

  11. Amazing letter! I loved all the pictures too! Your family sounds amazing.

  12. Great post! Loved the strength in your words and determination. I admire you for giving your son a normal childhood despite diabetes. 🙂

  13. oh my gosh, what an empowering post! I wish everyone in the world had this level of determination, diabetes or not!

  14. Great blog! I am so proud of all 5 of you!

  15. Awesome post!!!! I wanted to get my pom poms out of storage and climb to the top of the pyramid and shout, “Thats right! Take that sucka!”

  16. Great letter from a great Momma. Loved seeing all the pics of your sweet family.

  17. Jessica said:

    Love it!!

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