Thursday, June 6, 2013

Day by Day


Lorynn's diagnoses came as a shock to all of us.  Though I always knew there was a risk that one day it would happen, somehow as the years passed I developed a false sense of security.  One thing I never really told anyone was that I always had a deep fear that something would happen to Lola.  Maybe somewhere inside of me, I knew...

Anyway, this is our journey in the form of a poem...

Lorynn after diagnoses in the Janet Weis Children's Hospital

Yesterday, I woke up and it was Thursday -
Thursday, our lives were as they had always been,
but Friday -
Friday changed it all.

My little girl, so sweet and so young,
so happy and innocent.
Suddenly, on Friday,
you became a pincushion.
I kept thinking of my grandmother's sewing kit,
her little tomato pincushion,
and I hurt for you.
My heart broke for you.
My heart ached for your future,
my sweet little tomato.
So brave on the outside,
your eyes belied the truth -
that by Saturday you knew you were a Type 1 Diabetic,
that you were scared,
that you knew the ONLY thing you received
from a man you barely knew
was Diabetes.

You, so courageous,
you learned with every passing moment
how it had all changed,
and it would never again be the same.
No antibiotic fix,
no way to run or hide.
You, my sweet little tomato,
were never to eat again without
the sting of the disease,
the prick of the finger,
the pinch of the needle.

By Sunday, the reality settling,
you wanted to know about an upcoming Saturday,
Halloween;
would you be like the other kids?
Could you sneak a piece of candy?
Would you even live that long?
Your eyes asked your Mommy why,
and I had no answers,
my little tomato;
I had no words,
I had no tears that would heal you,
I had no way to take it all away.
I simply held you close
as only a mother can do.

On Monday, we resigned ourselves
to beat this,
to not let it change everything,
not let it mean everything,
not let it own you.
We would not be overcome;
you would live a normal life.
You were not a diabetic child,
but a child WITH diabetes,
and it wouldn't be more than that.

We went home on Tuesday.
For the first time, we were
-on our own-
and it was terrifying.
You shocked us with your poise,
and with your death-defying lows.
We didn't know 35 could be
prevented by an insulin adjustment.
You learned what -low- felt like.
I learned that my sweet, sweet,
little tomato
was fragile,
and not as strong as she let
the world
believe.

By Wednesday, we were the
family of a child with
Type I Diabetes.
My sweet little tomato,
your fingers scabbing over,
your heart broken,
the realization this wasn't a bad dream,
your journey only just beginning.
I was here only as a guide,
but you were the Captain,
but only a sweet little girl,
only nine years of living,
and so many ahead.
My little girl, so sweet and so young,
no longer as innocent or happy,
but ready for a long life.

Today is Thursday,
and you will live,
my sweet little tomato.



Lorynn meets Mecca

Out Valentines enjoying Shirley Temples and virgin Daquiris at their first Hibachi

Lorynn looks great.

Lorynn's choral concert

100 Things I Want to Tell My Daughters

100 Things I Want to Tell My Daughters

 

I saw another blogger do this and it deeply inspired me.  I chose this location because I had always meant to really blog about the experiences we have with our Lolabelle.  One of the best experiences is just being her mother... and Livvy's too.

And so, here is what I want them to know:
  1. There is NO ONE who will ever love you as much as your family.  Put them first.
  2. Being beautiful is not a size, but a state of being.
  3. A best friend trumps a best-just-about-anything-else.
  4. Your education is the gift you give yourself.  Choose to make it the best gift you ever receive.
  5. Someone who loves you will probably hurt you emotionally - but never physically.  THAT isn't love.
  6. You don't know true, all-consuming, unconditional love until you become a mother.
  7. A book can be your best friend, your emotional oasis and your Sunday night vacation.  
  8. Jewelry shouldn't overshadow you - just enhance you.
  9. The same thing with makeup.
  10. Our family breeds strong women.  Be proud and be bold.
  11. Never let a boy come between you and a friend.
  12. As you get older, you realize who are your real friends - and who are placeholder people.  Both are important in life.
  13. Don't give up on yourself - especially when it feels like you should.
  14. No man can be Mr. Darcy.
  15. When Harry Met Sally is the sum of all relationship knowledge.
  16. The best love isn't a firework; fireworks are dramatic explosions that end quickly and leave the world dark.
  17. True love isn't perfect.
  18. Neither are you.  That's ok =)
  19. Find a comfort food and learn to love it in moderation.
  20. A warm fire and a glass of wine can recenter you like nothing else.
  21. Find moments for you, no matter how busy life gets.  It's amazing what a pedicure or a massage can do for the psyche.
  22. No other person - not me, or a boy, or your sister... no one - can define you.  Remember that.
  23. There will never be a day that I stop loving you.
  24. There will never be a day that I don't miss you.
  25. There will never be a day that I wish my life were different.
  26. You are my life. <3 li="">
  27. Good music can be found on your radio - but it's not just on the Top 40 station.  Remember Ella and Etta and all the great songs I have shared with you.
  28. A musical stays in your soul always - soak them in.
  29. Money isn't everything - but it has a place that you need to respect.
  30. You don't need the biggest or the best of everything.
  31. Make time for your best friend.  You both deserve it.
  32. Never forget your roots; they are what gave you the wings to be yourself.
  33. Avoid intentionally hurting anyone.  You're better than that.
  34. Gossip - just don't do it.
  35. The best gifts you have given me happened before that age of 5. ;)
  36. Your dad has more patience than I do.
  37. Your dad is also less aware of what's going on.  Don't use that against him - it gets him into trouble. =)
  38. Being your mom is fun.
  39. Don't be afraid to have fun when you're a mom.
  40. You'd be surprised how much smiling can improve a situation.
  41. Don't let ANYONE step all over you - but know when to back down.
  42. Take care of your teeth,.
  43. Wash your face every night.  You'll be stunned how good it will make you feel.
  44. Every night, I do two things: I pray and then I lay in bed and tell my body - one part at a time - to relax.  
  45. No moment you devote to your spirituality or bettering yourself is ever wasted.
  46. Figure out the little splurges that really make your day better. 
  47. A dog can make your darkest day a little bit better.
  48. The smell of something baking will always be wonderful.
  49. The music and the shows you love as a kid will always be some of your favorites.
  50. You were lucky enough in life to have two fathers who loved you - one who made you and one who raised you.  Both are part of your story.
  51. Baba and Uncle Mike will always be with you - and when my time comes - so will I.
  52. Try something again that you disliked as a kid - you may just like it when you grow up.
  53. Be a worldy woman when it comes to art, music, history and literature.
  54. Be informed.
  55. Develop your own opinions.
  56. Don't be afraid to make choices - or to let others make choices when you're low.
  57. ASK FOR HELP.  We all need it sometimes.
  58. Wherever I am, that is home.  The door will always be open.
  59. Love your sister.  She will always be your best friend.
  60. Enemies are a waste of energy.  Avoid the negative people; don't feed into them or their drama.
  61. Write things down that you want to remember; journal if you can.  You will be glad you did.
  62. Falling in love is about the best feeling on the planet.
  63. Yes, you will love again.
  64. When you find the right person, you'll know.  And every day, it will be a challenge to make it last.
  65. Every relationship requires you to be present.  Make the effort for those that matter.
  66. Time does not heal everything.  Some aches stay with us always.  It is a matter of learning to live through the pain, and in spite of it.
  67. You don't know everything about me.  You'll be surprised how much you learn about me as you get older - and after I'm gone.
  68. You have taught me so much about myself - and who I want to be for you.
  69. Sometimes, I am so proud of you, I literally cry.  I feel that way every time I see you perform, or succeed at something you love. EVERY time.
  70. Don't sleep with someone to earn their love.  You'll lose their respect.
  71. You are more beautiful than I could hope to be, and I love that about you.
  72. Neither of you is my favorite - both of you are at different moments - and they happen in equal measure.
  73. I see parts of myself in you every day and I consider that my greatest accomplishment.
  74. Nothing hurts me more than you being hurt.
  75. Nothing scares me more than losing you.
  76. No one will ever be more important to me than you, nor could anyone come between us.
  77. Don't let grudges hold back relationships.  I made that mistake once, and it nearly destroyed my family =/
  78. Make memories;  you'll cherish them like you cannot possibly imagine. And take lots of pictures!  They will comfort you someday.
  79. Hobbies enrich us.  Try lots of them out.
  80. Make a really big collage once in your life - about yourself.  You'll treasure it.
  81. Love with your whole self, but only to those who have EARNED it.
  82. Be there completely for those who have EARNED it.
  83. Don't misjudge someone's feelings by their demeanor - judge them by their actions over time.
  84. Choose the person who will be there with you when your world collapses - and will wrap their arms around you and protect you from the falling debris.
  85. Be pretty - it's ok. =)
  86. You will be surprised how much lip color can make you look and feel better.
  87. They lie - there are some things in school you will never use.
  88. Write lots of letters.  Years from now, you will go through a drawer and find a letter from someone you love and you will run your fingers across their handwriting and feel them close to you.
  89. Water - drink a TON of it.  It will cure a headache, or dry skin, or a leg cramp.  Dehydration really damages your body.
  90. It's never too late.
  91. Don't do anything you'll regret.  Stop and consider before you act.  
  92. If I could literally take on any hurt for you, I would.  I would be diabetic or asthmatic or allergic or any combination of the above right now, if it made you all better.
  93. Don't tell people your favorite things, or they will inundate you with them =)
  94. Your heart will get broken - maybe more than once - but heartbreak is part of life.  
  95. Say you're sorry.
  96. Globetrotting is a state of being.  Travel often and you'll be happier for it.
  97. Be fearless when confronting change.
  98. Remember that every decision has consequences - both positive and negative.
  99. Celebrate holidays - and everydays.  Remember all those times that I brought you to an impromptu movie at 10pm or had a tea party with you at midnight.  That wasn't bipolar - that was celebrating life.
  100. Right this minute - RIGHT NOW - I love you.  Nothing - not time, not death, NOTHING, will ever change that.