Dear Levi,

Dear Levi,

You are not yet three but you have gone through so much and you are such an amazing trooper.  I started this blog because I had so many feelings pent up inside but then I realized one day, you might read this.  I don't know how to explain to you why I have to hurt you sometimes or why I have to sometimes say no to you.  Jack and Carolyn try so hard to help you but how does one so little understand what we are trying to do.

Today was your pump start.  I had read every page of the pump manual and I had worn the pump for a week.  In all fairness I wanted to be done with it and take it off. I know that is not an option for you.  Having Daddy restrain you while you screamed and I tried to do the insertion was horrible.  No parent wants to hurt their child.  No parent wants their child at the hospital either.  I hate having to hurt you.  I had promised you ice cream so ice cream it was - even at 10:30 in the morning.  We took you to McDonalds and you were so happy to have a hot fudge sundae.  The lady looked at me funny when we ordered it and in my head I was thinking "don't you dare mess with me today". 

I didn't expect to cry so much today.  All the feelings of diagnosis day just came back so strong.  I felt nauseous driving to the doctor and I felt nervous and sick to my stomach.  It's 12 hours later and I'm just feeling less anxious now.  I panicked and thought the pump site had gone bad.  I second guessed my decision on which insertion device to use.  I second guess every decision I make on how much insulin I give you and how many carbs every thing is.  And knowing this will never end is tough.  There's no finish line in sight. 

We're going to your "little carbs" playgroup tomorrow and I want to show you the other little tykes that have pumps too.  I'm hoping that you will make connections with other kids with D and as you grow up, these will be your friends that you can confide in and complain to.

Little man - you're so tough and so joyous and so strong.  Our family can learn a lot from you.  We won't let you down - even if we cry a lot along the way.

Love,
Mommy

A Mother's Anthem

*Taken from another mom

A Mother's Anthem

I am the mother of a diabetic child.
I don’t know what it’s like to go to sleep at night and know for certain my child will wake up in the morning.

I don’t know what it’s like to sleep the whole night through without waking up to do blood tests on my sleeping child.
I don’t know what it’s like to prepare a meal without a calculator, measuring cups, and a gram scale.

I don’t know what it’s like to drop my child off at school and know she will always be in the charge of someone who knows how to take care of her.

I do know what it’s like to force feed sugar in the middle of the night knowing I am sacrificing my child’s teeth to save her life.

I do know what it’s like to draw up insulin at 2 am and pray to God I’m not too sleepy to make a fatal error in judgment, technique or calculation.

I do know what it’s like to sit underneath the dining room table holding my sobbing child, explaining to her, “No, we can’t take a break just this one time.” while I inject insulin into her already bruised arm.

I do know what it’s like to walk away from the pharmacy counter with an armload of supplies
and realize I’ve just gone through another box of 200 syringes.

I do know what it’s like to help my child march bravely past the juice and cookies at the school reception that was supposed to be her reward for achieving Student of the Month.

I do know what it’s like to look into my child’s eyes and tell her she has an incurable disease
and explain to her what that means, and then to be comforted by her when I’m the one who can’t stop sobbing.

I do know what it’s like to love and cherish my child every minute of every day,
To know that I may someday donate a kidney to her,
And that if she were in need of a heart, mine would be out of the question,
Because it broke a long time ago.

I am the mother of a diabetic child.

4 Months Today

I'm quite surprised that today is 4 months and instead of wallowing in our new life, I have been so excited all day (with a tinge of sadness I guess).  Last week, Dave and I had quite a few discussions because I was just down.  This disease can be debillitating.  It never ends.  It never stops.  It never takes a break.  It just wears me down.  I can't go through my life always thinking about it.  I have to be able to concentrate on my family and to have fun.

 We had tossed around the idea of getting a Diabetic Alert Dog for Levi.  Nighttimes are the worst.  Our biggest fear is of Levi not waking up in the morning.  Last week he had so many lows that it was upsetting.  If a dog could help save Levi's life - then of course I have to have it.  Dave was very hesitant but knew that if something happened to Levi and there was a chance we could have prevented it - our family would never recover.

A dog isn't cheap.  In fact, it's as expensive as a car.  $20,000 for these dogs.  Initially the dollar amount completely freaked me out but I would do anything for our little guy.

We went active today with Warren Retrievers - http://www.guardianangelservicedogs.org/.  Check them out.  It is amazing what they are doing for families of diabetics.

Is it cheap?  Nope.  Could it save Levi's life?  Absolutely.  I couldn't be more excited.  We have to wait 6-8 months but we will.

What diabetes is really like for a parent

I've copied this from the blogger "mom of an extra sweet insulin girl".  I am copying it because it is just so perfect.  For all of you that ask me "how are you" or "is it getting easier", this one is for you.

What no one will tell you in the beginning

I'm not gonna lie to you. I won't sugar coat it. I am going to lay it all out on the line for you. Not in an attempt to scare you or give you nightmares...but rather in an attempt to prepare you...to help you...to shine the light on it all for you because I really wish that someone had been there to shine the light for me and be honest from the get go. So, if you are not a fan of the truth or blatant honesty...then please read no further.

This life with diabetes is hard. It will always be hard. It will never be how it once was. The way that you lived your life before diagnosis will never be again. Those days of carefree easy freedom are gone. The days of having your biggest worry be whether or not your child behaved at school are but a mere memory now. You will long for those days. You will bargain to get them back. You will pray for them to return. You will cry. You will cry. You will cry. You will never have a decent full nights worry free sleep again. It just will not happen. Do NOT believe the doctors when they tell you that you do not need to check your child's blood sugar overnight. You will never kiss your child goodbye as you drop them off at school, daycare, etc the same way again. You will linger with that parting hug just a bit longer...holding them...staring in their eyes to search for any signs of impending low blood sugars once you are gone. You will never look at activity or physical exercise the same way again. You won't see it as a "good way to burn off some of their never ending energy"...but rather as falling blood sugar numbers and "how long have they been running around? Do they look pale? Where did I put that juicebox? You will never look at food the same way again. It will no longer be about quickly grabbing dinner on the way home...or skipping lunch because you are out busy running errands. It will be about pre-planning, measuring carbs, giving insulin at the proper point in time to combat high blood sugars, making sure the restaurant has nutrition guides to help you determing carb counts, and guessing...always guessing. Life will never be about the black and white obvious clear cut answer anymore.

There is no book or manual out there that you can reference to get a specific answer to your detailed questions. There are only guesses...some guesses are more educated than others...but they are all still guesses. You will learn that doctors, nurses, and all other members of the medical field do NOT know as much as you once though they did. You will learn that over time, you will probably know the ins and outs of diabetes management better than they do honestly. You will learn that diabetes doesn't play fair. It doesn't follow any rules but it's own. You will learn that what works one day, may or may not work the next day. You will learn that nothing is for certain. You will learn how to plan for the worst case scenario...all the while knowing that you really have no idea how you will react if that scenario ever actually comes to be.

You will learn that you and your child will be judged. You will encounter ignorance. You will encounter rudeness...discrimination. You will learn that you have to choose how you react to that ignorance...you can either get angry and stoop to their level in response....or you can get angry and educate them instead..advocate for your child instead. You will feel like a broken record...repeating the same few lines over and over again to the ignorant masses. My child did not get diabetes from eating too much sugar. My child can not be cured just by not feeding them foods with sugar in it anymore. My child CAN eat anything. My child CAN do anything. No she will not grow out of it.

You will be sad. You will cry. You will cry. You will cry. You will feel what true exhaustion feels like. You will be jealous of parents who have children that are not type 1 diabetic. You will feel like you can't relate to those parents or friends anymore. You will find out who your true friends are. You will find out who will be there for you in your time of need. You will find out who actually cares and who could really care less. You will feel like you just...can't....do...this...anymore.........................

but you can.

You will learn that no matter what life throws at you, you and your child CAN DO THIS. You will find out that you are a lot stronger than you ever thought you were. You will see that your child is stronger and more brave than most adults. You will see that while yes this life is hard.....it does get easier. You will find comfort and solace in the familiar...the routine. You will gain confidence as the days go by. That is where you will find things a tad bit easier....in the confidence you gain. You will find comfort in others. You will feel a connection...a bond with other parents going through this same thing. You will gain a new family in them. You will find yourself wanting to help them...going out of your way to help them...to help their child when they are struggling. You will find yourself crying with them, laughing with them, proud of them. You will feel a connection with your own child that would otherwise never had been possible. You will get to know how their body reacts to things...foods, activity, emotions, stress. You will learn their patterns. Seek out the patterns for they are your key to finding some sanity.

You will realize that you CAN do this. Sure there will still be days that pass where you feel like diabetes has knocked you to the ground...flat on your face..beating you, but those days will pass...the sun will come out tomorrow and shine on a new day. You can do this. You will cry, you will smile, you will feel pride, joy, anger, sorrow, jealousy, grief, exhaustion, fear, stress, pain.......you will feel all these things and more...to such an extreme level as well. Please do not ever forget, you can do this....you ARE doing this....you are strong...and you are doing this.

Happy Post? Sort-of??

I fully realize that my posts are not full of sunshine and happiness.  Usually when I take the time to write, it is because something is weighing on my mind.  Earlier today, I thought that since it is Valentine's Day, I should write a post about how much I love my kiddos.  Then life got in the way.

Here are some of the highlights of my day:

• "Today must really suck for Levi since he can't celebrate Valentine's Day"

Yes, it sucks that it is Valentines Day for Levi but we'll work chocolate/candy into the day. Thanks for commenting.

• "sorry I didn't get some chocolate for Levi since it is Valentine's Day"

Yes, thank you for pointing out that there is a goodie bag for every other child but mine.  I'll be sure to explain to my 2 year old that he doesn't get one.

• In talking to his endo about moving to a pump, "as long as you realize it's not a cure"

Thanks Doc, I thought the pump would solve all my problems.  Thanks for clarifying that diabetes still sucks.

• I don't want my unborn child to get diabetes, how can I prevent it"

I clearly wanted mine to get it, which is why I didn't prevent it.  Go to hell.

So my happy post about how much I love my children was hijacked by the stupidity of the world and by my sensitivity to it. I'll try again next time.

Lessons

Jack, Carolyn and my hubby all got the stomach flu but recovered after a few days.  Levi got it too.  Wow.  We survived our first hospitalization up at Lucille Packard Children's Hospital and it has taken exactly two weeks for recovery.  This is the shortest blog ever for the most miserable two weeks ever.  Instead of rehashing all the terrible details, I thought I would share some lessons learned. 

• it's always the hot nurse on call when you get diarrhea in the emergency room
• nothing works better than hospitalization to convince friends and family that Diabetes is serious
• diabetes is determined to make me lose my sunny outlook
• some friends get it, most don't.
• after only 2 months, I knew Levi's diabetes better than the doctors/nurses
• the pediatric endocrinologists never come out of their golden tower
• moms on the babycenter "children with diabetes" are my go-to folks for assistance
• when you think the vomiting is over, the diarrhea starts.

Lastly, I learned that my 2 year old son is amazing.  He handled a catheter, IV's, numerous pokes and prods, and overall miserableness with such grace.  Diabetes has not dampened his spirit nor has it changed his personality. 

Like I said, a short blog for a terrible time.  My new goal is to not ever repeat the past two weeks. 

I found this on you tube.  I have no idea why it made me cry.  But it did.  Thought I would share.

http://www.youtube.com/watch?v=SXdKrocRlHs

OUCH! OUCH OUCH!!!!

Diabetes decided that it wasn't taking up enough of our time.  It wanted us to spend 2 1/2 hours on Monday with the doctor and another 3 hours today.  Kudos to Levi who is learning to play with his trains on the floor and totally disregard the adults. 

All I can say is ouch.  Today was the day we learned about the insulin pump.  The pump would be attached to Levi and "feed" him his insulin directly into the fat beneath his skin.  He would wear the pump on a belt and then there would be a tube into his bum.  Stanford won't allow you to move forward with the pump until you wear it yourself.  Dave went first.  It wasn't pretty.  I have to admit that I was rolling with laughter after Dave nearly assaulted the lady when she inserted the needle.  But then it was my turn.  I was thinking to myself, "how hard can this be?  I've given birth".  DAMN.  It's 2 hours later and I think I still feel it.  First of all, it's not a shot.  I think they tried to insert a damn knitting needle into my stomach.  I yelled ouch.  Then they told me that once it was in, I wouldn't feel it anymore.  I felt it.  I felt it for every second until the removed it.  Ummm, I don't see this working out for us.  Call me a wimp.  I'm actually bruised where it went in and I have a small bloody red spot from it.  So please, explain to me again how I'm going to do this to Levi every 3 days?  Ummm, again, I don't see that happening. 

Thanks for the class Stanford.  I think I'll continue with the daily regimen of 4 shots.  Otherwise, I think I would need to take a valium every 3 days.  Nope, not gonna happen.