In 2007 our lives were changed forever by Rubinstein-Taybi Syndrome. What we thought would be devastating ended up to be the biggest blessing.

Tuesday, January 20, 2015

My job as a pancreas is a damn roller coaster.

Max came up stairs and said "mommy I don't feel good" diabetes 101, check blood sugar. It had only been 1.5 hours since dinner too. Ugh. Ugh. Ugh. There is good news. My smart five year old recognized that he felt different and he came to me and said he didn't feel good. THIS IS HUGE at his age. 
Blueberries and yogurt brought those numbers right up. Sleep tight Max, cause I won't. 

Monday, January 19, 2015

Those words

Max asked me today, his voice filled with hope. "Will I still have diabetes on Easter?" Ouch. My heart. I've had my fingers crossed he somehow at five understood how big this was. That this wasn't just a 10 day course of meds and he'd be done. I looked him in the

eyes and told him Yep, still on Easter you'll have diabetes. You'll have it forever. He immediately started talking about his new lego set and conversation over.  At our appointment today we were told the absolute only thing that we can count on is change. So what do I do? Me who loves consistent routine with my babies  I guess I make change my consistent routine. Then I go lift weights. 

Sunday, January 18, 2015

And there goes the balance........

7 years ago I lost my balance when Alex was born. It was my first big knock down in this life so it hit extra hard, and it took years for me to regain my balance. The past 2 years have been easy compared to the first years with Alex. Just a few months ago I found myself going weeks without worrying about Alex's health. I had perfected walking the RTS tight rope, and even found a way to throw in a dance step here and there to keep things interesting.                                               Then January 8, 2015 I once again was knocked off balance. Max was diagnosed with T1D, and what took so many years to feel normal seemed so easy.                   A routine day may go like this. 7:00 am Max gets his long lasting insulin shot, I have to wake him up from a deep sleep and give him a shot, take his blood sugar and do the math to see how many units of insulin he will get after his carefully carb counted breakfast. Alex is up, I need to change his diaper, give him his Prevacid and other meds with breakfast, depending on the meal I will likely have to feed Alex myself. Breakfast for the other two no big deal. Alex poops, and who knows how but it's on the carpet too. Someone breaks the lamp, who cares. It's time for Max's 15-20 carb snack. He wants more, but he can't, he cries. I vacuum up the broken glass. Sit down, it's time for lunch. Test Maxs blood sugar, it's high, did he sneak a treat or is he getting sick? Did I mess up his insulin? Has he grown? So now he get an extra unit of insulin, I need him to eat all this food, good luck trusting your five year old to do that. Got it down, time for insulin. Tears. "Mom I don't want to, will it hurt?" He moves on, can I sit down? Alex pooped, he needs a bath. Is he getting enough attention? Are the others? I can't do this. I have to. It's time for dinner. Check blood sugar, it's low.   How many units now, he has to eat. "Mom I don't feel good". Is it the diabetes? Is he just sick? Is he sad? Alex you can't go outside its too cold. I should read to him, he wants to be spun in his chair. Maxs blood sugar, he needs his insulin. Wrestling practice. Are the bigs ok, I don't think I've said one thing to them. I can't do this. I have to. 

Saturday, January 10, 2015

Fix you

When you try your best, but you don't succeed
When you get what you want, but not what you need
When you feel so tired, but you can't sleep
Stuck in reverse
And the tears come streaming down your face
When you lose something you can't replace
When you love someone, but it goes to waste
Could it be worse?
Lights will guide you home
And ignite your bones
And I will try to fix you
And high up above or down below
When you're too in love to let it go
But if you never try you'll never know
Just what you're worth
Lights will guide you home 

And ignite your bones
And I will try to fix you

Tears stream down your face
When you lose something you cannot replace
Tears stream down your face
And I...

Tears stream down your face
I promise you I will learn from my mistakes

Tears stream down your face

I promise you I will learn from my mistakes
Tears stream down your face
And I...

Lights will guide you home
And ignite your bones
And I will try to fix you

Words by Coldplay 

Friday, December 19, 2014

Full circle.

The stack is nearly 1500 pages high. 1500 pledges to change the way they talk, the way the see others, and respect for all people. Thank you 7th graders at Turner for having Alex's back and changing the future for so many.  Love to you all. Spread the word to end the word.