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

Sunday, February 15, 2015

   As time passes, with every word spoken, and every broken heart you learn the difference between a helping hand and breaking ones spirit. Dependence isn't found in love, and crowds don't mean security. Full of grace, and eyes forward you swallow the grief  knowing that embraces aren't eternal, passion does not bring promises. Learning to build your foundation on the right now because the ground of tomorrow is not certain and dreams have a way of crashing. With each passing moment you learn that even the sunshine rays burn if you lay there too long. So planting your own seeds to bloom in your soul without waiting for someone to bring you flowers that wilt and you learn. You learn you are strong. You learn how to push forward. With every disappointment, with every judgment passed you learn you are enough, you are worthy and your fire continues to burn and time continues to pass.

Tuesday, February 10, 2015

This thing called life.

September 7, 2007 a grenade went off. Wounded, I laid there for years. I didn't need to lay there that long, but I was afraid to look up. As the dust settled,

I slowly sat up and assessed the damage. Stood up, brushed off the dust. Time to move on. January 8, 2015 a bomb went off. Diabetes. My babies body had turned on itself. Forever dependent on insulin. Forever living with a life and death responsibility. I'm not new to being knocked down. I understand that I will do this. Not always with grace, not always with confidence. I will do it. I have to. God did not give this to me because I can handle it. I'm no stronger than you reading this. I throw fits. I fail. I fail my friends, my family, myself. This happened because the world is imperfect. Because our human bodies are imperfect. Not because I can handle this more than the next person. I can handle this because I have to.  One thing I have learned is people are good. We are all imperfect but we are good. Everyone of us was born to love each other and help each other. Life is hard. Getting knocked down sucks. If I could take diabetes for Max I would in a heart beat, if I could lose my voice and give it to Alex I would. My job though is to brush myself off and guide them through the mess. They are ok. We are ok. I am ok. Life is hard, but we get up and move on and fight hard. 

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.