Many of you were extremely generous last year. All together we raised over $2,000! We're hoping to do the same this year. While many things have changed for us over the past year, there is a constancy to diabetes that is maddening. Here are some things I want you to know about our life with type one.
1) We check Grace's sugar at least 6x a day. It requires Grace to drop what's she's doing-extremely hard for an active kid-and get her finger pricked. Grace essentially can't eat until we've checked her sugar.
2) We frequently check Grace's sugar in the middle of the night. Not for giggles. Kids can go dangerously low in the night. I check her to keep her safe. It makes her tired. It makes me tired.
3) You might not know it when your child is fighting off a virus. We know immediately when Grace is fighting a virus. Even though she might not be sick, the act of fighting it off makes her diabetes go nuts and it makes her feel awful.
4) I receive multiple emails a day from our school nurse letting me know what Grace's numbers are, how her disposition is, and sometimes a phone call so we can discuss treatment. Essentially, every other hour, we are dealing with diabetes even when Grace is at school. She spends lots of time in the nurse's office when the other kids are at recess, lunch, or class.
5) Grace hates diabetes. It frustrates her. It makes her angry. Sometimes she doesn't want to cooperate and we have to make her. We argue about diabetes. I yell. She yells. She cries. I cry. The whole thing sucks and makes you feel like the meanest parent in the world when all you want to do is keep them safe.
6) Grace wears an insulin pump 24 hours a day, 7 days a week. It is not a cure for diabetes. A pump is a programmable pancreas. It's not "smart." It doesn't know when she is high or when she is low. We have to tell it what to do. Telling it what to do requires a close analysis of all of Grace's blood sugar numbers. Give too little and her sugar goes high. Give too much and her sugar goes low creating a dangerous situation.
7) Every three days we run a new "IV line" of insulin. It requires injecting a needle which leaves a tube under her skin to receive insulin. It hurts and Grace does not like changing her site. But it's better than needles all day long.
8) There is no cure for diabetes. In fact, there really is no cure on the horizon. Not even close. But we hope every day someone, somewhere will have a breakthrough. Despite this, Grace starts every day with a smile, spends her days like other kids, and doesn't let this thing stop her.
9) Diabetes puts a hurt on your heart like you never thought possible. The worry is a constant in your life. It never leaves, never gives you a break, never lets you rest.
10) Please consider a donation to the JDRF.
Here is the link to our page