Monday, November 12, 2012

We may have an author in the house....

....So, Sydney is writing a book....she has designated me as her "typist"...  It appears to be letter correspondence between 2 of whom was recently diagnosed with Type 1 Diabetes....  hmmmm wonder where she came up with that????

I think it will be interesting to see her perspective of her seems she has changed the names of the little girls....I can guess who the T1 is....but, I am not sure of the "friend"...

Here is a sample...

November 1st, 2012

Dear Tullia, 

Well, I have the baddest news of all time.  I got diagnosed with Type 1 diabetes.  Type 1 diabetes is when your pancreas doesn't work well and you have to have your finger poked with a needle.  I also have to have a shot whenever I eat.  

So you know how we are supposed to have a sleepover at your house?  Well, now we have to have it at mine because your mom doesn't know how to take care of diabetes. 


p.s.  Sorry my letter was so short! 

Sydney amazes me every day with things....what 8 yr old decides to write a book...I mean a whole chapter book with   I love her so very much....She is my "grace" today....well everyday.  But, today she chose to decide to do "this" amazing thing....that made my heart smile.  I "needed" a heart smile.  :o)

...a "new" normal.

A couple years ago I was a happy go lucky kind of mom....having those moments of "mommy" frustration but still managing to have:  a clean house, laundry done (pretty much, TIME for all the extras like friends, etc., I lived up to my own OCD exercised ALOT.....this was my "normal". 

Today....we have a new "normal"......I AM that same house is not clean, on most days laundry is a "situation", I no longer am organized in any fashion.... I "think" about exercising ALOT....I MISS my friends....I MISS not having to plan for every little trip outside of town...across town for that matter....some days...I HATE that little meter bag.  Our new normal includes finger pokes, night checks, insulin, an  insulin pump, fundraising, doctors appointments, phone calls from school, and sooo much more.

Most days I try to be encouraging to others....somedays it is all I can do to encourage myself.  Today is one of those days.... one of those days that I wish I could take it all away from her....I wish I could heal her body.  I wish she didn't have to do stupid finger pokes, insulin pump site changes, wear the pump 24/7, count every carb in everything she eats.....  Today...I wish she had a break. 

Today....I don't want to worry if the pharmacy gave me the correct amount of insulin, ketostix, I just want to "pretend"...this isn't our "normal". is.  ....and I know that God will get me through this day....He will help me find my smile, my motivation, my "sass"...He will give me encouraging moments today....He will provide me with Grace. a day with 1 set of footprints.....and a couple Kleenex's. 

One DAY at a TIME ........even Super Ninja D momma's are allowed weak moments.  They give us time to gather strength, reflect, and become even stronger.  It is OK to have a weak moment, it is OK to get mad & frustrated.....God does not give you more than you can handle & He does NOT expect you to be perfect.  I believe He asks us to cast our troubles on Him....and He will take care of the rest.

Saturday, November 3, 2012

....being Thankful

Being "thankful" about Type 1 Diabetes is a hard thing to do.   But....when I think about how much Life has changed since Diabetes entered Sydney's Life...there are some things that I am very thankful for:

1.  Sydney was diagnosed "early" in the process of her cells being destroyed, so her little body never got sick...had not yet been damaged like some children.  She was diagnosed without it being a life threatening situation.

2.  I am thankful and more appreciative of the amazing insurance plan that I do have at work.  Before having a chronic illness on the plan...I really didn't understand how "good" our insurance really is.

3.  I am thankful for the opportunity to see how strong my Sunshine girl is....she amazes me more and more each day.

4.  I am thankful for how much my Faith has grown in the past few years.  I am trying everyday to trust that God has a plan....and a reason.  I am trusting that He is carrying me through most days...I couldn't do this alone.

5.  I am thankful for the realization that I might be a pretty strong person.  My confidence in myself, my abilities as a mom, fundraiser, nurse, artificial pancreas, and so much more....grows everyday.  Of course somedays T1 tends to knock me down....but, I do get back up...

6.  I am thankful for the amazing friends I have gained from this experience....friends in every state, country, and territory that you could imagine.  You guys are amazing and "there" living this Life KNOW. 

7.  I am thankful for the opportunity to have such an amazing Endo team at Childrens Mercy....I hear such horrible stories from other families....I feel very blessed to have such a caring, compassionate, and knowledgeable "team".

8.  I am thankful for the opportunity to expand my knowledge and others about Type 1 Diabetes.  I knew practically nothing....and now...I feel like a walking medical book.  My goal is to make sure those who are around Sydney "know" what to do if she needs assistance.  My goal is also to ensure that parents, friends, etc know the signs and symptoms of what Type 1 Diabetes is....a missed diagnosis can mean death.  If I can prevent the sickness or death of a child.....any and all efforts I have made to educate others is worth it.

9.  I am thankful every moment....because my child is happy.  With everything on her plate....she smiles, she laughs, she is amazing.

Thursday, November 1, 2012


To most...Halloween is a crazy fun a family with a Type 1 child....It is CRAZY all right.  The costumes have to be perfect for the kids...the decorations "just" right...the trick or treating route mapped out perfectly.  Oh wait.....what is her blood sugar, high...low.....what are we going to do with all this candy??!!??!!! it necessary to involve candy or sweets in almost every holiday, every party, everything!!! 

What do we do???  We make the best of everything.  We get the costume, we do the decorations, we go trick or treating....we do what we can to make Life "normal" for our T1 children.  They have a few treats.....and as a T1 momma...we cringe to think what those treats are doing to their little bodies and will likely get little sleep making sure they are ok.......we can sleep tomorrow..........after we hide or dispose of all the candy ;o) 

...standing out in the crowd

Sunday, January 1, 2012

...Remember When.

I remember when....

Sydney was 2 years old and would chew me out...with out saying words, she would point her little fingers and say "dodoooo, da doooo, daa, daaa, daaaAAAA!!!!".  I would try not to laugh because she was so, so serious.  I knew in those days that she was a very strong and determined little girl.

I remember when...

I was having a "bad mommy" day a few years ago & was asking God..."Why did you make me a mom???  Because I didn't think that I was doing a good job..."  Sydney was being very stubborn that day...the house was a mess...I was so frustrated.  Then.....out of the blue Sydney walked up to me...pulled on my shirt & said as a question..."Momma, I am your Sunshine?"  It melted my heart & I knew that God was answering me in that little question.

I remember when....

I was driving home from her Well Child check in St. Joseph with my Sunshine girl on September 10th, 2010.....I was trying so hard to be strong.  We were going home to get clothes & other things to head to Childrens Mercy.  So, many things were going through my head.  I talked with my best friends on the way...crying, sobbing quietly so that Sydney would not wake up & hear me....  Trying to be strong...trying to be her foundation to know that everything would be alright.   That, that day...I remember that day...every moment...every sentence...That day that changed our world forever.  

Thursday, December 8, 2011

....deep breaths.

...Yesterday a friend told me that a young family member of theirs was diagnosed with Type 1 Diabetes last week.  My eyes welled up with tears....a 4 year old baby.  I took a deep breath, collected my thoughts....and then started trying to think of something, anything to have her tell the parents that would make this devastating news easier.

...I gave her my phone number for them & told her to have them call me.  I scratched a bunch of notes on a piece of paper...a torn piece of envelope...  All the while holding back tears, my chest aching to cry....just to let go & of those hard cries that don't really help...but somehow make you feel better.  What can "I" tell this family to help...  I told her to tell them it will get easier, it will get easier the more that they educate themselves...  I told her to tell them when it gets to be too much...take a breath, say a prayer, and know that their baby, this situation is in God's hands... I left my friend with a heavy heart...saying a silent prayer in my head for this family...for this child...

I wish that I could take this away from their baby....from my baby....but I can't....Darn IT....I can't...

But...what I can do...    I can pray everyday...I can HOPE for a Cure.  I can assist this family in anyway that I possibly can.  I can tell them little things that helped me out.  I Hope that I can make a difference for them...I Hope that I can somehow make this easier for them...  I HOPE that I can somehow lessen this heaviness in their heart....

I HOPE that God can lessen this heaviness in mine...