Letters to My Daughter

My Lively, Joyful Girl,

You are almost 6 years old and I haven’t written you any letters yet. I’ve wanted to many times, but until tonight I didn’t have the perfect first message for you.

What a joy you are to all of us, sweet Elizabeth Esther Hope. Our strong shining star of hope. That’s what your name means. You are full of life and energy and you are the completion of our little family.

Tonight we were praying together for some members of our church Community Group. Sweet, amazing people with real heart-wrenching needs. Circumstances that can only be altered by a miracle. Loss of pregnancies for one. Unanswered questions, waiting for a diagnosis for a child for another. Yet one more, standing with a husband whose wife has left him and there is a sweet little girl caught in the middle of another broken home. The circumstances would overwhelm us if it wasn’t for faith. Faith in a loving God whose number one character trait is: Good.  Sometimes it’s the only anchor we can cling to.

I can talk like this with you. We have had countless similar conversations. Even though you are not quite 6 yet. Because you have had to grow up faster than I wished. Faster than I ever dreamed.

When I was praying for our loved ones, you (as always) noticed my tears. You kept asking me, “Are you almost crying?” I kept answering, “Yes, Sweetheart. Tonight I am.” And then you did an incredibly thoughtful thing. You held up your tiny palm and told me to blow. You had me take five deep breaths and blow on your palm. So I could calm down.

Just like I have had you do on my palm ever since you were 2. Ever since your brother was diagnosed with Type 1 Diabetes. Ever since our world never looked the same again.

I’m sure I will never understand what it is like being the sibling of someone with a chronic disease like you do. I will never understand what you have gone through listening to the cries, screams and terrors of your brother as he faces his fears. In the early days, Daddy would take you to the park so you didn’t have to hear what was going on. Now you just cover your ears, and then find a quieter place to play your worship music and dance (after blowing on my palm 5 times so you can calm down). I’m so thankful you can do that. Sweetheart, what a gift from God! You know exactly where to go in time of need!!

Tonight, after I blew on your sweet little hand 5 times in a row to stop crying, you looked at me with your wise eyes and said, “Momma, it’s ok. Remember when I told you I would have Diabetes too so Georgie wouldn’t be alone? It’s ok.” It was as if your sharing would help everyone we just prayed for. I wonder if you would take on everyone’s brokenness for the sake of their wholeness. In my heart of hearts I think you would.

You, my darling Miracle Girl are the unsung hero of our family.

I know you are young for this, but we just finished watching the Lord of the Rings Trilogy. You never batted an eye or questioned a thing. You told me that Sam was your favorite. And I know why. Because whether we like it or not, you are the Sam to our Frodo. We try to keep the burden from you whenever and however possible, but the fact is that Georgie carries a heavy weight at times. And you. You carry George. I’ve seen it time and time again.

You are so unique, beautiful girl. So strong and so wholesome. So determined to contribute your beauty to the world, our family, your brother.

I admire you. I love you. I thank God for you. Your Dad and I (and your whole family and extended family and well shoot…everyone who knows you!!!) will do everything we can to support you and give you the love and attention you need.

I prayed and prayed for a little girl. After 4 boys and a miscarriage….And here you are. Shining bright. Bringing strength. Giving Hope.

As only you can.

Letters to my Son

My Dear Brave Boy,

It’s been a while since I wrote you a letter.

Yesterday was a big day for you. After months of talking about it and studying what it means, you decided to get water baptized. So many things happened in order for you to get baptized.

It wasn’t that long ago that you were afraid of water. I was so happy for you when you started learning to swim and overcame that fear. You have a lot of fun now with Sissy every time Dad takes you swimming. I could see the courage in your eyes when the pastor had you get ready to go under the water. There may have been a lingering fear or hesitation, but you pushed through and obeyed what the Lord was leading you to do.

That’s not the only milestone you have overcome lately. A few months ago you decided you were ready to learn all the steps of doing an insulin pump site change. It took time and effort, but you learned it all! And after nearly 4 years of tears, anxiety and even panic at times, you are able to do it yourself with almost no effort now. I don’t have the words to tell you how relieved I am, and proud of you. We rewarded you by activating your phone so you could go to your cousins’ house for your first overnighter without us. I could see the new maturity and grit in your eyes.

We have made it through some rough patches where you feel an overwhelming amount of negative emotions. I have had to remind you often that you and your sister are complete miracles, formed entirely out of God’s incredible grace and love toward us. I have enjoyed watching you embrace that truth and grow in your own relationship with Christ. Which is what led to your desire to take the next step and be baptized.

On a side note, it was hard for Sis to watch you get baptized without her. She wants to experience everything with you (even going so far as to say she wishes she had diabetes sometimes) because she loves you so much. Did you hear her say she wished she could wear her water wings in the baptismal so she could be “bap-a-tized” too?? We got a good laugh out of that one! Thank you for setting a good example for her to follow.

Once you were all dried off, new clothes on and heading back to service I asked you if the Lord had said anything to you, or if you felt different. Your answer brought tears because I know how much you have struggled with feelings of unworthiness, loneliness and self-hate. I had prayed that God would do a miracle when you were under the water. Something only He can do. I prayed for your heart. Those deep places only you and He know about. And He answered. When you came up out of the water, He gave you that miracle. You told me, “Mom. I feel completely forgiven. I feel so incredible.”

To feel completely forgiven. What a gift. Nothing separating you from the love of God. Now you have your whole life ahead of you, to live in uninhibited relationship with your Savior.

I can’t wait to see where He leads you. Because you are His. You are God’s boy.

Thank you, Mr. Banting

On this day, November 14, 1891, a miracle worker named Frederick Banting was born.  In 1920 he happened upon an article about the pancreas which led to his interest in diabetes.  His interest in diabetes led to his discovery of insulin in 1921.  Which led to the life of my son, and countless others, being saved.  This day is now called World Diabetes Day in his honor.

“Insulin is not a cure for diabetes; it is a treatment.”  Sir Frederick Banting

Before insulin, children diagnosed with what used to be referred to as Juvenile Diabetes were given a death sentence.  Insulin is the key in the body that gets energy to the cells.  Without this key, the energy (sugar) stays in the blood stream causing hyperglycemia which untreated is fatal.  Too much insulin will cause low blood sugar, hypoglycemia, which untreated is also fatal.  We walk a constant tightrope due to this clear, stinky (kind of smells like band-aids!) liquid hormone.

 

In the early days of diagnosis we had to talk about insulin constantly.  Our little five year old boy didn’t understand why he had to have a shot with every meal.  Insulin was at the center of our lives.  It still is.  Today, he pushes a few buttons on his insulin pump and the miracle hormone starts to work and he goes about his day.  Every once in a while, he dreads having his pump site rotated and I have to point out to him (again) why he needs insulin.  In these moments I try to take my time explaining.  He knows all about Frederick Banting and how incredible his research and discovery are.

“I am a firm believer in the theory that you can do or be anything that you wish in this world, within reason, if you are prepared to make the sacrifices, think and work hard enough and long enough.”  Sir Frederick Banting

Today we remember a man who literally changed the course of history.  A man who just happened upon a certain article.  A man who worked tirelessly to give a future to generations of people.  Happy Birthday, Mr. Banting.  Thank you will not ever be enough.

Letters to My Son

My dearest boy,

I have a feeling that March 18th will always be a difficult day for me.  I hope throughout the years you will humor your emotional, sentimental Mama because on this day I will most likely be in tears often and try to hug or hold you frequently.

It is a strange feeling to realize that our lives literally changed overnight.  From March 18 2014 to March 19 2014 the world tilted and when it straightened out everything looked different.  Type 1 Diabetes had arrived.

Tomorrow is your second Diaversary.  A word I had never heard of before T1D.  But it is a word that we utilize to celebrate your bravery.

You don’t know it, but tomorrow over 50 people will arrive to celebrate you.  Congratulate you.  Encourage you.  Because you deserve it.

You wouldn’t ever guess it, but we have arranged to have two soldiers arrive in a military vehicle to award you for your bravery.  Soldiers who are heroes!  Who have never met you but want to honor you.  Because this year has been a battlefield for you.  You have fought long and hard.

Also, tomorrow all the kids at your school who have T1D will be here.  All 8 of you together.  All of the parents together. I’m hoping we can encourage and strengthen each other.  As you have encouraged and strengthened us this year with your bravery and courage.

Through all the tears, fear, trauma, questions for God, anger and resentment at this “new normal”… I have admired you, George.  I have held you in my arms, crying with you, questioning with you, my heart breaking into a million pieces, yet I have been overwhelmed by your character.  I have noticed two qualities that are rising up in your sweet little life.

One is honesty.  I can’t count the times you have started a sentence to me with, “Mom you might not want to hear this but….” and then you share your heart.  The hurt.  The anger.  The confusion.  The fear.  Even the occasional confession of trying to sneak food.  Son, God values honesty.  Even when it is terribly hard, continue to be honest.  You are growing up to be a mighty man of valor.  You are on the right track with honesty.

The second is tenacity.  You never give up.  It might take almost an hour to do a site change on your tummy, but eventually, after the tears, screaming and hiding, you go through with it.  Finger poke after finger poke.  Waiting 20 minutes after dosing for any kind of sugar.  Doing things you do not want to do, over and over.  What an inspiration you are to me, Big Cheese!!  I look up to you in so many ways.

Your second year with Type 1 Diabetes has been incredibly difficult.  But it has also been very sweet.  We have had many treasured moments, deep talks and long prayers.  My darling boy I hope you know what a joy and inspiration you are to our whole family.

I love you with all of my fart.  I mean heart.

Northwest Rain

It is so very good to be home.

Don’t get me wrong.  I grew to appreciate Colorado in the five years I lived there.  I grew accustomed to the dry climate and consistent blue skies.  I loved going to the Rocky Mountains.  I found love and beauty in many things there.  Especially the people.

But I really missed the rain.  Northwest rain.  Cold.  Consistent.  Gray.  Drizzly.  I love it.  Really love it.

Just now, I sat outside on my parents’ front porch and soaked in the rain.  (Not literally because I was under the roof.)  I tuned everything out and listened to the rain.  I watched the dry ground soak it up, flowers and plants drink it in.  I took deep breaths and willed the rain to saturate my soul.

Life isn’t made up of sunshine alone.  Everyone’s life has rain.  Sometimes it comes in a thunderstorm.  Sometimes it comes with partly sunny skies and rainbows.  The common denominator for every single person regardless of how it comes is that it surely will come.  Sometimes when it rains, it pours.  And that’s when life gets especially interesting.  It’s one thing to deal with a little spring shower.  It’s a completely different experience to navigate through a downpour and a flash flood.

You know what I have discovered over the past few seasons of my life?  Instead of trying to avoid the downpour, it’s better to learn how to swim.  Suffering is part of life.  Might as well dive in.  I’m learning not to fear being in over my head but I confess that I’m not a strong swimmer.  Sometimes I grab onto something that I think will help me float, only to find that it drags me down instead.  I’m trying desperately to learn how to reach out and grab onto a true anchor.  Something that won’t cause me to drift or drown.  That something is called hope.

• Hope for my marriage.
• Hope for my son to learn how to care for himself and thrive in spite of Type 1 Diabetes.  And then look beyond himself and reach out to care for others someday.  Do I dare to hope for God to heal him?  Yes.  Yes I hope for that too.
• Hope for my daughter’s compassionate nature to lead her to places and people who are on God’s heart.
• Hope for us to daily (sometimes even minute by minute) turn to our God for help, shelter and safety in the deluge.

There is a fine line between accepting suffering and contending for it to come to an end.  I walk that fine line every day.  It helps to remember that suffering produces character and refines faith.  Suffering has purpose and rain brings beautiful results to the land.  That’s why I love rain!  Because it is a constant reminder to me of growth, new life, beauty.  Of hope.  Of the One True God, the giver of life.  A constant reminder that the rain is worth it.

Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love Him.  James 1:12

365 Days Later

One year ago tonight as I put my son George to bed, I remember praying while he fell asleep. I knew something was wrong because he was excessively thirsty, hungry, fatigued and had severe mood swings. I was scared and unsure. When we got up the next morning, I weighed him and discovered that he was losing weight. We went to the doctor that afternoon and George was given a diagnosis of Type 1 Diabetes. And our lives have never been the same.

One year ago today, I was blissfully unaware of how to count carbs for meals. Testing someone’s blood sugar was a mystery, and I definitely had never been trained on how to administer insulin through an injection. I didn’t know the purpose of insulin, or the function of a pancreas. Long-acting insulin, short-acting insulin, lancets, test strips, pens (a fancy way to give shots), blood glucose records, food records, carb to insulin ratios, sick days, pumps, insets, cartridges, syringes, ketones, glucagon, and of course hypo or hyper-glycemia. All foreign. Like a foreign language in a foreign land.

365 days later it is now my native tongue and the T1D community familiar ground.

Some people told me that it would get better. That our “new normal” with T1D would get easier. That has not happened. I’m not sure it is possible with a chronic disease in which 24 hours a day, 7 days a week I am my son’s pancreas. And nutritionist. And nurse. And teacher. And mother. And comforter, and pastor/shepherd (although there is ONE much better at those roles, and I point George to Him every time I can). However, the way I respond to our new normal is better. And because of technology we can treat diabetes in a more straightforward way. For this I am extremely grateful.

A year ago tonight, I would never have fathomed going through some of the experiences we have had to endure. But there is the key phrase: Going Through. I have learned that grief is a season, not a destination. My stage of grieving now is such that I look back over the past year with an ache in my heart but faith and hope in my spirit. I have had some dark times. Anxiety. Depression. Isolation. Fear. Deep deep grief and loss. Sometimes it seemed like there was no light at the end of the diabetes tunnel. But none of those places were destinations for me. Those are not destinations for any of us.

What am I destined for?

365 days after a life-changing diagnosis for my beloved son, I can truly say that I’m destined to give God glory. I’m destined to lay all my pain, weakness, fear, sin and doubt at His feet and just worship Him. Because I learned this year that most of the time, that is the one and only thing I am capable of.

I learned that I’m far weaker and more fragile than I ever imagined.
I learned that I am completely dependent on His faithfulness.
I learned that He takes care of my son in ways I never can.
I learned a new level of teamwork and partnership with my incredible husband Shane.
I learned that He has uniquely fashioned my beautiful daughter to be on this life journey with us.
I learned that some of His people are truly truly His hands and feet. And He sends them to me exactly when I need them.
I learned that prayer is everything.
I learned that He is always speaking to me. Sometimes I listen.
I learned that He gets to be God all by Himself. This is the true definition of sovereignty.
Where there is anxiety, I learned how to ask for peace.
Where there is depression, I learned how to lift my eyes and worship.
Where there is isolation, I learned to receive help from others.
Where there is fear, I asked for faith.
The chasms of grief and loss do not go on forever.

365 days later it is no small miracle that I can lift my head toward my Savior and my God and declare, “My help comes from the LORD…He who keeps me will not slumber…The LORD is my keeper; the LORD is my shade on my right hand.” Ps. 121

Tonight when I put Georgie to bed, my heart ached. But my spirit was singing. He is healthy. He is learning how to walk with His Lord. He is a normal 6 year old boy. Who happens to have T1D. And we are all impacted by his little life, and his great courage.

“Courage is simply the willingness to be afraid and act anyway.”
Dr. Robert Anthony

Letters to My Son

 

My strong little man,

I have a feeling that today will be remembered as a turning point for you.  We enrolled you in a Taekwondo Academy and today was your first class.  You were nervous at first, not sure you wanted to participate.  But as soon as the Instructor called out, “Mr. George!  Will you join us?”  You ran to the mat and jumped up and down with excitement.

Your personality came out during this class.  You are a very black and white, all or nothing young man.  When your heart is involved in something, nothing can stop you.  I watched you run laps and try to pass all the other kids.  During circuit training, you had no fear of failure.  You jumped right in and tried several things you had never even seen done before.  When the class was over, you would not leave until I purchased your uniform because you were determined to come back in two days for your white belt.  You wore the uniform all afternoon.

This will be yet another Type 1 Diabetes learning curve for us.  I tested your blood sugar before the class, and I knew you were going low toward the end.  But with some trial and error this will be no problem for us.

One reason we decided to sign you up for Taekwondo is because we notice that you are becoming increasingly frustrated and angry.  The littlest thing will cause you to burst into tears or shout angrily.  You frequently say to me that you feel like no one likes you.  And the hardest for me:  You want to hurt yourself sometimes.  I know that blood sugar levels play a part in this, but it isn’t the only factor.

One night a couple of weeks ago I got you up to visit the bathroom and you kept calling yourself an idiot and hitting yourself in the face.  I tested you and you were high.  I gave you a shot for the first time in the middle of the night.  Once you were peacefully sleeping again, I wept and cried out to the Lord.  Any parent who has ever seen their child hurt themselves knows the helplessness and fear that I felt.  But that night, something changed in my heart.  I began to see T1D as an enemy who was trying to destroy my son.

So I declared war.

• I’m reading some new parenting material that is giving me a new perspective on how to communicate with and train you.
• I am exercising because I want to set that example for you.  I need to be healthy in order to take care of you.  I need extra energy so I can come alongside you and teach you how to manage this disease.
• I make myself read something about T1D every single night so I’m constantly learning something new.
• I pray more.  And then I pray again.  And then I find myself praying.  Because Son, if there is anything I know for absolute sure right now…it is that we cannot do this on our own.  And we don’t need to.  We just read the story of David and Goliath again together.  At the end of the story I asked you, “Who brought victory to the Israelites?”  You didn’t even hesitate when you said, “God did.”  We may be fighting our own Goliath right now, but I promise you, God is the one who gives us strength for the battle.

I spoke with your Instructor after class.  She was so impressed with you that she recommends moving you up to the older class in September.  She mentioned that your focus and determination were exceptional.  You are a natural. Of course you are. You have been in a serious battle since March 19, 2014.

There is no other little soldier that I would rather fight alongside.  If you can do it, I can do it.

I love you with aaaaaaaallllllll of my fart.  I mean, heart.

Mom

This Pancreas Failed Art Class

George’s doctor tells me that Type 1 Diabetes is not a science.  It is an art.  But I’m the one who sat in art class with a blank piece of paper trying to decide how to draw a perfectly straight line, with a perfectly sharpened crayon, wishing for a completely quiet classroom and step by step guidelines on how to draw that perfectly straight line.

I cannot build anything with Legos unless there are instructions. Varying from a recipe??  I feel like I’m breaking the rules somehow.  I’m literal and analytical.  Black and white.  All or nothing.  1 + 2 absolutely must equal 3 and if it doesn’t I will probably spend countless hours trying to figure out why.  However, I am also an emotional, over-sensitive, deep feeler.  It is most likely this deep emotional side of me that enables me to sit at the piano and sing my own songs of worship to the Lord.  I don’t need someone else’s music or words for this.  It is the one part of my life that does not need a formula for guidance.  It just flows.

Put all this together and I’m probably describing lots of other women out there.  Which is all fine and good.  But put all this together and it’s not a good combination for someone trying to be their son’s pancreas.

I can provide George with a perfect day.  Shots exactly on time.  Insulin to Carb ratios absolutely error free.  Exercise noted and snacks given to help maintain blood sugar levels.  Balanced meals with carbs and proteins working together.  Adequate hydration.  Everything working together to give George the best possible chance for stable blood sugar levels.  And I can give him a finger poke, test his blood and find that he is low.  Or high.  And moody.  And confused.  And angry.  And full of sorrow.  And has a stomachache.

Georgie also has not-so-perfect days.  Meals not quite on time.   Insulin to Carb ratio not perfect due to food not being measured adequately.  Too much exercise without snacks.  Or not enough exercise and too many snacks.  Meals with carbs only and I forget to add some protein.  And I can give him a finger poke, test his blood and find that he is exactly in the target range.  And he is joyful.  And content.  And feels great.

This makes the analytical, literal, 1 + 2 = 3 side of me absolutely anxious and stressed.  And it drives the emotional, over-sensitive side of me to guilt and tears.  I know I’m writing some vulnerable things here, but being a pancreas is so much more than food, insulin, carbs and shots.  Taking care of my son in this way is bringing to the surface every vulnerable part of me.  Yes, it also causes my strengths to surface as well.  As it does for anyone walking through pain and suffering.

And that’s life, isn’t it?  The good with the bad.  The joy with the sorrow.  The dawn after the dark night.

This is all on my mind tonight as I gear up for another long night tending to George.  His numbers were consistently high all afternoon and evening.  So we had him running sprints and playing hard outside before bed.  Which could lead to nighttime lows.

For this girl who failed art class, I’m desperately wishing there was an easy, step-by-step formula for my son tonight.  But since there is not, I’ll just let that one part of my life that isn’t contained by a formula loose.  I won’t worry about perfectly straight lines with perfectly sharpened crayons tonight.  I will look to the Lord with every finger poke, and with every decision I have to make based on his blood sugar levels.  And then I will let myself worship.  No formulas.  No instructions.  Just deep calling to deep.  All night long.

“Deep calls to deep at the sound of Your waterfalls; all Your breakers and Your waves have rolled over me.”  Ps. 42:7

Letters to My Son

My Precious Boy,

I’m sitting in our back yard tonight looking at the garden you helped me plant this weekend. Just a few hours ago, this patio table was covered with Star Wars Legos and you were teaching me all about them. I love watching your excitement! Georgie, you are so very loved. So valued and cherished.

God created you with an extra tender heart. You have a sensitivity toward others that runs deep.  You are usually aware of how others might be thinking or feeling. These are special things God has planted within you, and they will grow into beautiful tools that you can use to show compassion to many. They will also help you in your relationship with Jesus; having a tender heart toward Him, being sensitive to when He is speaking to you or wants you to do something.

Along with this, you are living with Type 1 Diabetes which has opened your eyes to a whole new world. You can empathize with people going through pain and suffering. In the past few weeks I have noticed that you not only empathize, but you act on it.  Which is true compassion.

• When we read the Bible and pray you always want to pray for your Dad.  “Dear God.  Thank you for this beautiful day.  Please put joy and grace down deep into my Dad’s heart.  Let him know I want to play with him and I love him.”
• I was struggling through some discouragement recently.  You could tell even though I tried my best to hide it from you. I will always remember how you told me that I’m beautiful and graceful and the bestest mom. You hugged me, kissed me and told me that you would help me all day long.
• Your sister stepped on a bee yesterday. Your dad and I couldn’t get her calmed down, but you brought her water.  Then you brought a piece of bread and helped her eat it. You spoke soothingly to her about how the pain wouldn’t last long and everything would be OK.  She stopped crying and allowed you to care for her.  Because you have experienced pain, you knew how to care for someone in pain.  It was breathtaking to watch.

And Georgie, just as you reach out and care for others, I want to be sure that you know how many are reaching out and caring for you as well.  Today I realized this in a profound way.  Your grandparents from Lacey, WA are here visiting and taking care of your great grandma for a few weeks.  Your Grandma Patty had to learn how to give insulin shots to your great grandma.  When you realized this, you wanted her to give you a shot for lunch today.  My heart was in my throat because you haven’t allowed anyone to give you a shot except your dad and me since your hospital visit.  It was a huge step for you!  And for me.

So many people are ready and willing to walk this road with you.  Your grandparents here in town went to an all day seminar to learn how to care for you and give shots.  Your brother and sister-in-law are researching, learning, gathering recipes and doing all they can to be prepared in case anything ever happened to your dad and I.  My parents are learning as much as they can as well. Your uncle, aunt and cousins sent a huge box of goodies especially to bring us joy.  And above all…everyone is praying.  Contending for your healing.  Constantly.

I’m sure by the time you read these letters, you will know that one of my all time favorite books/movies is The Lord of the Rings.  Toward the end of the movie, when Frodo and Sam are trying to climb the last mountain that will take them to destroy The Ring, Frodo falls down under the weight of the evil ring and cannot get up.  Sam cries, “I cannot carry the ring for you.  But I can carry you!!”  And he carries Frodo up the mountain.

We cannot carry T1D for you, my brave boy.  But we can, and will carry you.  Because we are also being carried.  By the Creator and Maker of tender, sensitive hearts.  By the One who loves us beyond measure.